January/ February 2009

AN RANCISCO EDICINE S F M VOL.82 NO.1 January/February 2009 $5.00

JOURNAL OF THE SAN FRANCISCO MEDICAL SOCIETY

Last Wishes

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In This Issue

SAN FRANCISCO MEDICINE January/February 2008 Volume 82, Number 1 Last Wishes FEATURE ARTICLES

MONTHLY COLUMNS

10 Butterflies, Love, and Soul: Life, Legacy, and Last Wishes Mike Denney, MD, PhD

4 On Your Behalf 7 President’s Message Charles Wibbelsman, MD

12 Five Things: A Last Wish for Interpersonal Healing Shieva Khayam-Bashi, MD

9 Editorial Mike Denney, MD, PhD

14 Going Home: Last Rituals for the Dying Lynn Burns 15 Evelyn’s Story of Graceful Surrender: Guided Imagery and End-of-Life Issues Leslie Davenport, MFT

33 Hospital News

17 A Last Wish, Realized: One Patient Plants a Seed for His Friends and Family to Sow Amanda Denz, MA 18 Luka’s Wish: A Last Wish Granted in Both Life and Death Shieva Khayam-Bashi, MD 20 Love and the Bolinas Lagoon: A Story of Last Wishes and Ethical Wills Nancy Olin 21 An Artist’s Legacy: Family, Friends, and Community Carry on the Work of a Loved One David Washer

Editorial and Advertising Offices 1003 A O’Reilly San Francisco, CA 94129 Phone: 415.561.0850 ext.261

23 Creating a Legacy: What Can Be Done at the End of Life?

Michael W. Rabow, MD; David Spiegel, MD; and Ernest H. Rosenbaum, MD

Fax: 415.561.0833

25 The Last Lecture: Legacies, Living Fully, and The Last Lecture Steve Walsh, MD

Subscriptions:

28 A Conversation with Betty Rollin: A Story of Last Wishes Fulfilled Steve Heilig, MPH

our website, www.sfms.org, or can be

27 Growth and Peace at the End of Life: A Last Wish That Is Possible Michael Rabow, MD

Email: adenz@sfms.org Web: www.sfms.org

$45 per year; $5 per issue Advertising information is available on sent upon request.

Printing: Sundance Press P.O. Box 26605 Tuscon, AZ 85726-6605

30 Collected Thoughts on Last Wishes

www.sfms.org

January/February 2009 San Francisco Medicine

On Your Behalf January/February 2008

A Sampling of Activities and Actions of Interest to SFMS Members

Volume 82, Number 1 Editor Mike Denney Managing Editor Amanda Denz Copy Editor Mary VanClay Cover Artist Amanda Denz Editorial Board Chairman Mike Denney Obituarist Nancy Thomson Stephen Askin

Shieva Khayam-Bashi

Toni Brayer

Arthur Lyons

Linda Hawes-Clever

Terri Pickering

Gordon Fung

Ricki Pollycove

Erica Goode

Stephen Walsh

Gretchen Gooding SFMS Officers President Charles J. Wibbelsman President-Elect Michael Rokeach Secretary George A. Fouras Treasurer Gary L. Chan Editor Mike Denney Immediate Past President Steven Fugaro SFMS Executive Staff Executive Director Mary Lou Licwinko Director of Public Health & Education Steve Heilig Director of Administration Posi Lyon Director of Membership Therese Porter Director of Communications Amanda Denz Board of Directors Term:

Jeffrey Newman

Jan 2009-Dec 2011

Thomas J. Peitz

Jeffrey Beane

Daniel M. Raybin

Andrew F. Calman

Michael H. Siu

Lawrence Cheung

Term:

Peter J. Curran

Jan 2007-Dec 2009

Thomas H. Lee

Brian T. Andrews

Richard A. Podolin

Lucy S. Crain

Rodman S. Rogers

Jane M. Hightower

Term:

Donald C. Kitt

Jan 2008-Dec 2010

Jordan Shlain

Jennifer H. Do

Lily M. Tan

Keith E. Loring

Shannon Udovic-

William A. Miller

Constant

CMA Trustee Robert J. Margolin AMA Representatives H. Hugh Vincent, Delegate Robert J. Margolin, Alternate Delegate

Notes from the Membership Department

to let us know of any changes or updates by calling (415) 561-0850 extension 268 or e-mailing tporter@sfms.org.

Mark Your Calendar for the CMA Legislative Leadership Day Do You Work with Residents?

CMA’s annual Legislative Leadership Day will be held on Tuesday, April 14, 2009, at the Sacramento Convention Center.

More information will be available in a few weeks. If you’ve attended previously, you know that this is always a terrific opportunity to join your fellow physicians for an interesting and productive day of advocacy, networking, and legislative information exchange. If you’ve never been to a Legislative Leadership Day, consider attending this one to see—and participate in—the power of organized medicine in action.

A room block has been reserved at the Marriott at $189 a night. There are fifty rooms in the block. Attendees may start making reservations by calling (800) 3313131 and stating that they are part of the California Medical Association room block.

You may also book online at www.marriott. com/sacdt by putting CMACMAA in the “Group code” box.

For information or to register for Leadership Day, please contact Jennifer Williams at (916) 444-5532 or jwilliams2@cmanet. org. You can also contact Therese Porter in the SFMS Membership Department at (415) 561-0850 extension 268 or tporter@ sfms.org.

Keep Your Contact Information Up to Date

Have you moved or changed your contact information? We are beginning work on the 2009–2010 SFMS Membership Directory. The Medical Society wants to ensure that you receive important communications from us, and we want to make certain that your most up-to-date contact information appears in the Directory. A database update mailing is going out this week, and you will find a postage-paid update card in this magazine. Of course, you can also contact the Membership Department at any time

San Francisco Medicine January/February 2009

SFMS wants to reach out to residents in San Francisco’s residency programs.

Thanks to arrangements made by both the SFMS and the CMA, dues for residents are complimentary for the duration of their residency. As with regular active membership, joining online is easy at www.sfms. org. If you are interested in helping promote membership among the residents with whom you work, contact Therese Porter in the Membership Department at (415) 5610850 extension 268 or tporter@sfms.org for more information or assistance.

Don’t Let Reimbursement Problems Affect Your Practice!

Thousands of California doctors are dealing with difficulties receiving payment from Medicare. The transition to NPI numbers and the switch from NHIC to Palmetto as the Medicare carrier for California have created a bureaucratic nightmare of red tape and rejected claims for doctors, delaying Medicare payments for months. CMA and SFMS can help you resolve these problems and expedite the payment of any delayed claims. The CMA Economic Services team has already helped hundreds of doctors fix their Medicare problems and get paid, so that they can get back to taking care of their patients.

If you are an SFMS member facing problems getting reimbursed from Medicare, you can get help by contacting the special CMA reimbursement hotline at (800) 7864262. You can also refer your nonmember physician peers to Therese Porter in the Membership Department at (415) 561-0850 extension 268 for information on how to join SFMS/CMA and obtain help with Medicare reimbursement problems, among other member benefits.

www.sfms.org

State Supreme Court Outlaws Balance Billing, Increases Burden on Stressed ER System

The California State Supreme Court recently struck down the practice of “balance billing,” forcing physicians and hospitals to eat the cost of emergency medical care that HMOs refuse to cover.

When HMOs don’t pay the full cost of ER care for their policyholders—a growing trend—doctors must bill for the outstanding balance, creating an awful burden for both physician and patient. The practice is known as balance billing.

CMA supports a solution that protects doctors and patients by requiring HMOs to pay the bill for emergency services. By outlawing balance billing without a realistic remedy, however, the court has placed another strain on financially struggling emergency rooms and the physicians who work there.

The court’s failure to solve the underpayment problem will stress the already beleaguered emergency care system. More than seventy California ERs have closed since 1990. In addition, the state’s emergency rooms performed more than $1 billion in uncompensated care in the year ending June 30, 2007, the most recent statistics available, according to the Office of Statewide Health Planning and Development.

CMA is exploring all of its options to ensure physicians have adequate recourse when HMOs fail to pay reasonably for emergency services.

Organized medicine remains steadfast in its efforts to ensure that noncontracted physicians are properly paid for services provided to patients. To assist in these efforts, CMA will be distributing a survey this week on the issue of underpayment www.sfms.org

for out-of-network services. All physicians are urged to complete the survey as soon as possible.

For more information, contact (800) 786-4CMA extension 4262 or info@ cmanet.org.

Medi-Cal Claims with Patient SSNs Will Be Denied Beginning 2/1

Beginning on February 1, physicians can no longer bill Medi-Cal or the Child Health and Disability Prevention Program using patients’ Social Security numbers as identifiers. All providers must use the fourteen-character Medi-Cal identification number from recipients’ Benefits Identification Cards (BIC) or paper ID cards when submitting claims. The only exemption to this rule is for Medicare crossover claims.

Physicians may continue to bill Medicare crossover claims using the recipient’s SSN/ Medicare number as it appears on beneficiaries’ Medicare identification cards.

For more information, contact Frank Navarro at (916) 551-2046 or fnavarro@ cmanet.org.

Medical Board Changes CME Reporting Requirements New CME reporting requirements recently passed by the Medical Board take effect in 2009. Physicians will now be required to complete fifty CME hours during every two-year licensure period. Previously, physicians were required to complete 100 hours every four years. CME will also be calculated based on the physician’s personal license renewal date (the last day of the month of your birthday), not the calendar year.

IM Q P h y s i c i a n R e v i e w e r Recruitment

IMQ is recruiting and credentialing physicians who wish to serve on Judicial Review Committees for the California Department of Corrections and Rehabilitation. These panels will hear evidence regarding quality performance of a physician designated by the CDCR for review before the California State Personnel Board. For further information, contact Leslie Iacopi at (415) 882-5167.

January/February 2009 San Francisco Medicine

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President’s Message Charles Wibbelsman, MD

Hopes for the New Year

T

his is my first column in San Francisco Medicine as your new president for 2009, and I would like to take this opportunity to thank all of the members of the San Francisco Medical Society for allowing me to have this role. I am honored and humbled to be in this position. When one considers the current political landscape and the changes that 2009 are bringing, having the distinction of being the first pediatrician to be president in thirty-four years is also, in a way, a change.

When I first arrived in San Francisco in 1976, having just completed a fellowship in adolescent medicine and a two-year tour with the U.S. Navy in Long Beach, my first position was serving as chief of the Venereal Disease Clinic for the City and County of San Francisco. The clinic was located at 250 Fourth Street, between Howard and Folsom Streets, at a time when a convention center at that location was only a dream and certainly naming the center after an assassinated mayor was in no one’s thoughts. Working in the clinic gave me practical insight into delivering health care in a county system that served a large population prior to the onset of the HIV epidemic. Indeed, it was then, in the late 1970s, that the San Francisco V.D. Clinic, as it was called at that time, was one of the five sites that the CDC was using to perform vaccine trials for the hepatitis B vaccine. Interestingly, more than 80 percent of the patients screened for immunity to hepatitis B revealed a positive core antibody, allowing us to offer the vaccine to only 20 percent of this population. However, several years later, the frozen sera from the blood samples collected in this vaccine trial provided us

with valuable insight into the serologic status of patients with HIV several years before the first clinical report in 1981 of three patients with an immunodeficiency.

Currently, as a pediatrician in adolescent medicine with the Permanente Medical Group here in San Francisco, I have had the opportunity to work with the San Francisco Medical Society and the American Academy of Pediatrics to advocate for and effect legislative changes that impact the health care of patients and the practice of medicine in San Francisco. As a delegate to the California Medical Association’s annual House of Delegates (HOD) for the past fourteen years, I have seen many HOD resolutions that have resulted in legislation promoting better health care for Californians as well as safeguarding physician compensation and scope of practice. The CMA/SFMS success in preserving the MICRA (Malpractice Insurance Compensation Reform Act) cap on noneconomic damages and preventing decreases in Medi-Cal compensation as well as the Governor’s 2 percent tax on physicians this past year are cogent examples of how organized medicine can serve San Francisco physicians.

As president this year, I hope to continue this advocacy for physicians and intend to continue to represent the medical society in our role of ensuring the good health of all San Franciscans. Our strength is in numbers. One of my highest priorities will be to increase our membership, seeking additional members among those physicians practicing in the City and County of San Francisco who are not currently part of the SFMS. Please join me in this effort.

2009 SFMS Seminar Schedule

Below is a list of the upcoming SFMS Seminars. For more details, please visit www.sfms.org/events or contact Posi Lyon at (415) 561-0850 extension 260 or plyon@sfms.org. All seminars require preregistration.

Friday, February 20, 2009—Repairing Leaks in Billing to Boost Profits in 2009: Billing, Coding, and Collection Strategies Tuesday, March 17, 2009—Transitioning Your Practice: Retiring, Selling, or Buying a Practice Friday, April 24, 2009 —Reducing Overhead and Realizing Increased Income in Economic Downturns Friday, May 19, 2009 —Negotiating Physician PPO Agreements Effectively: The Blueprint for Success Friday, October 16, 2009 —Customer Service/Front Office Telephone Techniques/Difficult Patients Skills Tuesday, November 17, 2009 —“MBA” for Physicians and Office Managers

www.sfms.org

January/February 2009 San Francisco Medicine

Editorial Mike Denney, MD, PhD

Last Wishes

I

t seems that the last wishes of some ancient Egyptian kings were to take others with them when they died. Excavations of tombs by archeologists during the past few hundred years at Abydos, the necropolis of the kings of the Egyptian First Dynasty (3100-2800 B.C.), have unearthed wine vessels, jewelry, food remnants, tools, the skeletons of domestic animals, and even a fleet of wooden boats. The excavations also revealed the graves of many human beings—servants, high-ranking officials, and even family members—who apparently had been buried alive or poisoned so as to accompany the king to his grave and life after death.

This idea of life after death was symbolized in ancient Egypt by the sacred scarab, Scarabaeus sacer, commonly known as the dung beetle. The hieroglyphic image of the scarab means “to come into being” or “transformation,” and is associated also with the sun god Khepri, who pushes the sun to arise each morning as a new day is born out of darkness. Thus, the scarab came to symbolize rebirth, transformation, and resurrection. The ancient kings apparently thought they needed to take with them their tools, food, and paraphernalia and their family members, servants, and officials so as to continue their reign in the afterlife.

This issue of San Francisco Medicine does not emphasize these selfish estate management techniques of group descent into the underworld but instead focuses upon the more heartfelt last wishes of those who face death—the personal gratification of having lived a good life on earth and the desire for the well-being and success of surviving friends, colleagues, and loved ones. One place that we can gain a glimpse of the profundity of these soulful last wishes can be found in letters written by those who faced imminent death.

In 1603, Sir Walter Raleigh was imprisoned in the Tower of London after being convicted of conspiring against the crown.

While there, he wrote his famous History of the World, in which he states, “It is therefore death alone that can suddenly make man to know himself.” On the night before he was scheduled to be executed, Raleigh wrote a letter to his wife, expounding obliquely upon his virtue as a good man, “Know it my deare wife that your son is the son of a true man.” He wished her well in the future, saying, “My love I send that you may keep it when I am dead, and my councell [sic] that you may remember it when I am no more.”

In another example, John Brown, who waged a brutal campaign against proslavery forces, was captured at Harper’s Ferry in 1859 www.sfms.org

and sentenced to death. On the night before he was to be hanged he wrote a letter to “My dearly beloved Wife, Sons & Daughters, Everyone,” in which he asserted his beneficence, saying, “I am waiting the hour of my public murder with great composure of mind, & cheerfulness: feeling the strongest assurance that in no other possible way could I be used to so much advance the cause of God; & of humanity.”

The famous writer Fyodor Dostoevsky, at the age of 28, was already tied to a pillar to be executed by firing squad when he received a reprieve. He later wrote a letter to his brother describing his thoughts during what he thought was his last minute: “I remembered you, brother, and all yours; during the last minute you, you alone, were in my mind, only then I realized how I love you.” About his own life, he wrote, “When I look back at the past and think how much time has been wasted in vain, how much time was lost in delusions, in errors, in idleness, in ignorance of how to live.”

In 1912, when Captain Robert Scott and his four fellow explorers were freezing to death, prevented by storms from returning safely from the South Pole, he wrote in his log, “If we have been willing to give our lives to this enterprise, which is for the honour of our country, I appeal to our countrymen to see that those who depend upon us are properly cared for.”

This emphasis upon more heartfelt last wishes for one’s legacy and the well-being of those left behind on earth may be reflected in the changing imagery of Scarabaeus sacer, the dung beetle. In later Egyptian dynasties, after human sacrifice was no longer practiced, scarab amulets made of stone, bone, ivory, and precious medals were placed over the heart of the dead as they were buried. The scarab was there not just to symbolize life after death but to testify that the person had led a good and loving life.

These soulful last wishes may offer deep meaning for physicians and others who practice the healing arts. In the famous words of Hippocrates, “Life is short, the art is long.”

January/February 2009 San Francisco Medicine

Last Wishes

Butterflies, Love, and Soul Life, Legacy, and Last Wishes

Mike Denney, MD, PhD

T

he famous psychiatrist and thanatologist Elisabeth Kübler-Ross, during an interview in 1995 with Daniel Redwood, a chiropractor and writer, was asked what had inspired her to begin working in end-of-life care. Many people had assumed from her writings that she first became motivated after she had graduated from medical school in Switzerland and immigrated to the United States, where she observed the lack of adequate care to the terminally ill at the hospitals in which she trained and worked. Instead, Kübler-Ross, who was a teenager during World War II, said that the beginning of her work was in 1945, when, at the age of 19, she visited Maidanek, the Nazi concentration camp in Poland where half a million Jews had been exterminated in gas chambers, their bodies burned in ovens. Kübler-Ross said, “I tried to see how children had gone into the gas chambers after having lost their families, their homes, their schools, and everything.”

Kübler-Ross noted that at Maidanek in the rooms in which the children were housed while awaiting their deaths the walls were filled with pictures and images of butterflies, some of them carved into the wood with crude instruments and fingernails by these children. She said, “It was incomprehensible to me. Thousands of children going into the gas chamber, and this is the message they leave behind—a butterfly.”

Perhaps for end-of-life care there is something deeper to be learned from the message those children at Maidanek concentration camp left behind when they created images of butterflies as they awaited impending death. Uncannily, without knowing the mythology of the butterfly, using only their intuition and perhaps some innate collective unconscious inherent in

human beings, these children chose as their symbol the butterfly, an image that since the beginning of human existence and to people of all corners of the earth represents aspects of love and soul.

From Yunan province in China, there is a traditional tale of two young lovers who died and now lie in a common grave over which, every spring, two butterflies appear, symbolizing the undying love and the souls of the couple. In Japan, butterflies symbolize loving marital bliss. Hindu mythology holds that butterflies represent peace, joy, and rebirth. In Africa, some tribes wear butterfly body ornaments during ceremonies of fertility and renewal of nature. In Russia, Germany, Ireland, and other parts of Europe, butterflies have always symbolized the soul, and when a person dies the windows and doors are left open so that the soul as a butterfly can fly away. In Mexico, butterflies signify love, happiness, fertility, and rebirth, and the festival of the Day of the Dead near the end of October is the time of the return of the migrating Monarch butterflies, who are thought to represent the souls of the dead. In indigenous American cultures, butterflies represent the messengers for last wishes to be granted from the Great Spirit.

Perhaps in Western culture the best example of butterflies as love and soul is the ancient Greek myth of Eros and Psyche.

Eros, sometimes portrayed as a winged youth, was the god of love, and the Greek word psyche translated into English means both “butterfly” and “soul.” The goddess Psyche is often pictured as having butterfly wings. In this story, Eros falls in love with the beautiful mortal Psyche. In a terrible misunderstanding about Eros’s identity, they become separated, and after many

10 San Francisco Medicine January/February 2009

travails they are finally reunited and Psyche is elevated to the status of a goddess. In this story, Eros (the winged) and Psyche (the butterfly, love, and soul) are forever united in a fluttering sacred bond.

After her discovery of the butterflies at Maidanek, Kübler-Ross went on to write her seminal book On Death and Dying (1969).

In it, she describes how she had observed in her work that doctors, nurses, and other medical personnel unconsciously avoided the rooms of the sick who were hopelessly ill. Without a medical task of preserving life, the doctors and others seemed to feel helpless, perhaps as failures, with nothing to offer that could help. Kübler-Ross changed that. Inspiring what would later become the hospice movement, she taught us how to help the terminally ill through the often intermixed and recurring five stages of dying—denial, anger, bargaining, depression, and acceptance.

Nowadays, having organized KüblerRoss’s work throughout the culture, we refer to “end-of-life care,” “palliative care,” and “death and dying.” Principles established by the AMA have been adopted by various specialty organizations and sanctioned by the American Board of Palliative and Hospice Care and the American Academy of Palliative and Hospice Care. In addition to physical medical care, the standards demand respect for the wishes and dignity of patients and compassionate care of their psychological, social, and spiritual well-being.

The AMA also advocates for more clinical and evidence-based research for providing care at the end of life.

Of course, the union of love and soul as applied to the end-of-life care may not yet be fully realized in our high-tech medical world. A strictly evidence-based clinical www.sfms.org

and scientific approach—using checklists, protocols, and flow charts and methodically administering the principles, guidelines, and legal documents—might leave something to be desired. In her just-released book The Mercy Papers: A Memoir of Three Weeks, Robin Romm laments the dispassionate and routine way that her mother was treated during her dying weeks. Romm notices that the hospice nurse “ . . . looks past me to my mother, past my mother to the voice she listens to when she’s not listening to any of us.” Romm, whose mother was a successful attorney, says of the nurse, “She’s building a boat to sail my mother out. She has no interest in my mother’s life, the thoughts she had, the cases she won, her family. [She] will build a boat of morphine and pillows and then I will have no mother and the days will be wordless and empty.”

In his 1993 book How We Die, the renowned surgeon and author Sherwin B. Nuland says, “We have created the method of modern dying. Modern dying takes place in the modern hospital, where it can be hidden, cleansed of its organic blight, and finally packaged for modern burial. We hide our faces from its face, but still we spread our fingers just a bit, because there is something in us that cannot resist a peek.”

Nuland goes on to note that “There is often a serenity—sometimes even a dignity—in the act of death, but rarely in the process of dying.”

In this year of 2009, emergency room and intensive care physician Robert Martensen, in his book A Life Worth Living, speaks out about modern high-tech medicine. In an interview by Claudia Dreifus in the New York Times, Martensen says, “Most Americans die in hospitals or nursing homes, and neither is configured to take care of dying patients.” He notes that it is not unusual for nursing home patients in their last six months of life to be shuttled back and forth, to and from emergency rooms or clinics, often receiving painful interventions. He observes, “The patient is artificially maintained that way until their body gives out.”

There are other recent authors who have made observations about love and soul in the context of death and modern medicine. In his nonfiction book Nothing to www.sfms.org

Be Frightened Of (2008), the British novelist Julian Barnes observes, “We shall probably die in hospital, you and I; a modern death, with little folklore present. When Stravinsky died, his widow Vera made sure that all the mirrors in the room were covered; she also avoided touching his corpse, believing that the spirit lived on within it for another forty days. In many cultures, doors and windows would be opened so that the soul might escape and fly free; and you didn’t lean over, or stand in front of a dying person, for the same reason. Hospital dying has done away with such customs. In the place of folklore, we have bureaucratic procedure.” And the renowned Bay Area psychiatrist Irvin Yalom offers a more secular approach in his book Staring at the Sun (2008). He notes that when contemplating death, people can experience a transformation, a prompting to “ . . . grapple with your fundamental human responsibility to construct an authentic life of engagement, connectivity, meaning, and self-fulfillment.” To support this view, he invokes the famous Tolstoy story The Death of Ivan Ilych, in which the selfish, arrogant, and unfeeling protagonist is suffering from a painful and fatal abdominal illness, but as death approaches he discovers compassion, love, and tenderness for others, including his wife, his son, and a servant boy. In this newfound soulful state of grace, Ivan Ilych ultimately dies with immense joy.

And so it is that we may receive the message of love and soul offered by the children of Maidanek, who, in the face of death, created their images of butterflies. We may reflect upon end-of-life and palliative care through the eyes of Eros the winged and Psyche the butterfly.

enough—that psychological well-being is about butterflies, that social well-being is about love, and that spiritual well-being is about soul.

Thus we can include in our work the transcendent awareness that psychological well-being includes a dying person’s life, legacy, and meaning; that social well-being includes love with family, friends, even the professional caregivers, and perhaps all of humanity; and that spiritual well-being includes a cosmic concept of soul, the simple idea that life is, indeed, sacred.

On the day when death will knock at thy door what wilt thou offer to him?

Oh, I will set before my guest the full vessel of my life—I will never let him go with empty hands.

All the sweet vintage of all my autumn days and summer nights, all the earnings and gleanings of my busy life will I place before him at the close of my days when death will knock at my door.

—Rabindranath Tagore

From this perspective, whether in homes, nursing facilities, or hospitals, we may notice that diligently practicing the clinical principles and guidelines of the AMA, Hospice, and the American Academy of Palliative and End of Life Care may not be January/February 2009 San Francisco Medicine 11

Last Wishes

Five Things A Last Wish for Interpersonal Healing

Shieva Khayam-Bashi, MD

S

he tried to sound calm as she left me the phone message, but I could hear the fear in her voice: “Hi, Shieva.

I just found out that the melanoma has spread to my liver, just a little bit. I will be going in to the hospital tomorrow, so they can marinate my liver in chemotherapy juices. Sounds fun, huh? Will you come see me there? I hope so. Bye.” I knew that she was terrified and looking for optimism from me again.

In my heart, I felt Tessa’s terror. This time, I did not feel optimistic at all. This was terrible news. She was only thirty-three years old. She was pleased to tell people that at least she had “lived to the same age as Jesus,” but that she really didn’t want to die so soon: “I am not afraid to die, but I will really miss living the rest of my life.” She had a lovely relationship with her fiancé and they were planning to marry this year, after nine years together. I sat beside her as she lay in the hospital bed and received IV fluids the next day. As more scan results came back, it became clearer to me that it was not “a little” metastatic disease, but rather it was a lot. She would not likely live much longer.

I allowed her to direct our conversation. She chose to focus on talking about her wedding plans and hopes for a baby in the future. Knowing it was not realistic to plan a wedding for next year, I looked in her eyes and just listened. I hoped there would be an opening to transition to talking about the moment’s tough reality, which I was pretty sure that she knew. But she seemed not to want to stop talking, for fear of exactly such a transition.

Finally, after a good deal of nervous talk about her plans, an opening cropped up. I asked about how she felt right now,

here in the hospital. Initially, she said she felt really good—then she began to cry and admitted that she was afraid. “It’s pretty bad, isn’t it?” she said. I reached for her hand and held it, and told her in as gentle a way as I

“The feelings that come from expressing the Five Things include those of immense relief, peace, comfort, gratitude, and love.” could that, despite all her chemotherapy and radiation, the cancer had spread to much more than her liver—there were many spots in her liver as well as her adrenal glands, her kidneys, and her spleen. She looked away from me, toward the window. Then she squeezed my hand. I quietly sat and held her hand, watching the tears stream down her face. “I knew it,” she said. “I knew it.”

Silence and sadness cloaked us both, dimming the light in the small hospital room. When she looked back at me, she said she “kind of knew” by the way that I walked in the room, that my body language seemed sad to her. She said she didn’t know how to tell her fiancé, and would I help? Of course I would. She told me that she had no idea of what to do now. I asked if she wanted to begin by talking with her loved ones, including her sister and mother.

As many people do, Tessa had many broken relationships. She hadn’t talked to her sister much in the last year due to a conflict, and she had lost closeness with her mother over the years. I asked if she would

12 San Francisco Medicine January/February 2009

be interested in trying something that I might offer her, a way to help her talk with her family and friends and begin to heal her relationships. She looked a little hopeful as I began to share the “Five Things” with her, as a kind of prescription that would help her begin to mend and find closure in relationships.

I was deeply thankful that I had just finished reading a beautiful book, Dying Well: Peace and Possibilities at the End of Life, by Ira Byock, MD, a former president of the American Academy of Hospice and Palliative Medicine. In this exceptionally moving book, Dr. Byock shares the experiences of his hospice patients and their families as they travel on their journeys at the end of life. He would often write out for his patients what hospice calls the “Five Things of Relationship Completion.” These Five Things are: Forgive me.

I forgive you.

Thank you.

I love you.

Good-bye.

Byock writes that this gives “a kind of script with which to greet [one’s] final days with courage and determination.” I have found that offering this “script” relieves a person of the “I wouldn’t know where to begin” problem of talking with family and actually makes it something that can be done.

I explained and wrote the Five Things down on the back of the slip of paper that came as Tessa’s meal menu. She looked at it and said that this gave her a sense of peace in that she could follow a “script”—but then she realized that she would feel very awkward trying to say these things to her sister. I suggested www.sfms.org

that she could tell Pam that this was not her idea but something that I had asked her to do, so the burden of responsibility could be removed from her.

When I returned the next morning, I was surprised to find Tessa remarkably calm, peaceful, and actually smiling a genuine smile. I asked how she was. “I did it! I did the Five Things with my sister—and then with my mom. It was so wonderful! I got to tell them things I had never wanted to speak of, and I feel so much lighter. Like a huge weight, a ton of bricks, is off of me. And then my sister said the Five Things back to me! She asked me to forgive her for when she started to drift apart from me after her husband left her, and that she forgives me for often being so stubborn and willful about my own way of doing things, because that always made it harder for her. She knows I never meant to hurt her. And she thanked me for being a source of optimism and hope for her, and for showing her how to go through something as hard as cancer with grace and courage! And she told me that she loves me, for everything that I am . . . and she said good-bye and how much she will miss me and remember me. It was wondrous. Just wonder-ous.”

Tessa cried. She said they were actually “happy tears,” if I could believe it—they were “tears of relief.” After she spoke about her experience of saying the Five Things, she said she was filled with a kind of joy and a peace and a comfort that she had never known before. A kind of miracle had occurred inside her heart, and it closed the large space between her heart and the hearts of those she loved. She felt closer and she felt lighter.

Everyone felt lighter. The enormous invisible burden of silent interpersonal distress had been relieved.

“And it was really not so hard at all!” she said. She thanked me. I was grateful for her phenomenal relief, and I said that we should thank Dr. Byock for writing his beautiful book.

She went on to tell me what she said to her mother, and what her mother said back to her. And she said she was going to do the Five Things with her fiancé, her best friend, her aunt, and several others. She felt empowered now that she had this new and very effective tool for healing expression in her relationships. Healing her relationships www.sfms.org

no longer seemed an insurmountable task.

Since then, she had daily meaningful talks with her sister and mother, they both came to stay with her, and she felt their loving support at a time when she needed it the most.

Though Tessa knew she was dying, she felt that she and her loved ones were somehow healing their hearts together.

After Tessa’s funeral service, many family members approached me and asked, “Are you Dr. Shieva?” Yes, I answered. Then I was hugged warmly by so many who said, “Thank you! Thank you for telling Tessa to do the Five Things! It changed our lives. It gave us back the peace in our relationship. I feel healed because of it. I am doing the Five Things with my own family now. You never know when it’ll be ‘my time,’ and I want to have healed relationships before I go!”

At the end of life, the most prevailing last wishes of most people are (1) not to have pain, (2) not to die alone, and (3) to experience healing and closure in relationships. I thank Dr. Byock for writing about the Five Things, which help grant the wish for interpersonal healing and completion of relationships. I know of no other tool that offers the gifts of forgiveness, gratitude, love, and closure so simply and so clearly. I have offered the Five Things to many more of my patients facing the end of life, and I have taught it to residents and medical students as well. As it was for Tessa, the feelings that come from expressing the Five Things include those of immense relief, peace, comfort, gratitude, and love.

Someone once said, “Live every day as if it’s your last—because one of these days you are going to be right.” Since none of us can know when it will actually be “our time,” I believe that we all might make a practice of saying four of the Five Things to our loved ones regularly (excluding good-bye, of course), so that we might live in a state of healed relationships throughout as much of our lives as possible, not only at the end. In this way, our last wish for interpersonal healing and peace could be granted long before it is really needed.

Shieva Khayam-Bashi, MD, is director of the short-term skilled nursing facility at San Francisco General Hospital.

The San Francisco Medical Society would like to welcome the following new members

Shelley Arredondo, MD The Permanente Medical Group Benjamin Busch, DO California Emergency Physicians Tin Do, MD California Emergency Physicians Daniel H. Goodman, MD Bruce Jones , MD The Permanente Medical Group Sirisat Khalsa , MD Referred by Peter Curran, MD Marc Levsky, MD California Emergency Physicians Ngoc Phan, MD The Permanente Medical Group Referred by Lily Tan, MD David Rubin, MD The Permanente Medical Group Jay Stewart, MD UCSF Joanne Sun, MD California Emergency Physicians

January/February 2009 San Francisco Medicine 13

Last Wishes

Going Home Last Rituals for the Dying

Lynn Burns

S

eventy-nine-year-old Angelina, attending what will likely be her last holiday gathering with her children, grandchildren, extended family, and friends, sits quietly in her wheelchair, eyes closed in prayer. Her son, Robert, crouches before her.

Serious, concerned, he takes her hand.

“Mama,” he says in a soft, loving voice, choked with emotion, “everyone wants to spend time with you. Can’t you pray for yourself later, after everyone’s gone home?”

She looks up, surprised, and reaches to stroke his cheek. “Oh, son, I’m not praying for myself, ” she says, speaking lovingly to him, as she has since his childhood. “I’m praying for the rest of you.”

Angelina’s behavior suggests what we know to be true of those facing imminent passing: a desire—a need—to satisfy themselves that their loved ones are prepared to live on without them. They need to feel free to make their certain passage, to face the greatest mystery of life: death.

As human beings, we share one immutable destiny: We will all make the transition from life to death. Some of us won’t know what hit us; others will have extended time to contemplate the approaching end of life and the process for transitioning into it.

For some, particularly those who hold a religious faith, death is often expressed as “going home.” Not only is it a reflection back to childhood security, a time where one is surrounded by love and safety, but it may also refer to crossing over from the concerns of the present world to a promised home with God. Many without a particular religious belief system might accept their numbered days and look with intellect and curious anticipation toward completing the life circle and leaving their lifelong legacy.

The process of dying, for those who have the luxury—yes, luxury—of knowing that it is approaching, has multiple layers. It is both a physical and an emotional journey that is characterized by the need to complete un-

“The process of dying ... has multiple layers.

It is both a physical and an emotional journey that is characterized by the need to complete unfinished business, address physical issues, and mark our lives here on earth.” finished business, address physical issues, and mark our lives here on earth. It is important to listen to what the dying are asking for.

“These last wishes,” says Megory Anderson, director of the Sacred Dying Foundation here in San Francisco, “represent both practical needs as well as ways of saying good-bye.

They allow people to feel in control of their experiences. They also let people leave a bit of themselves behind. ‘Don’t forget me. Don’t lose the love we have shared in this life.’”

The transition process begins when we accept the fact that death is nearing. Those who are dying want to “put their house in order” by addressing issues that feel unfinished. These may be as practical as making a will or settling financial debts or as emotional as reconciliation with someone who has been estranged, but the effect is strong and positive. This is a time to express love and

14 San Francisco Medicine January/February 2009

forgiveness, to feel loved and forgiven.

Those who are dying frequently express a need to talk honestly about what is happening to them and, by extension, those around them. They have moved beyond the stage of accepting comforting platitudes. They want and need candid interaction with their loved ones and caregivers about the process as it evolves. The ability to approach, without pretense, the emotional and physical tasks they have set for themselves can be both physically and emotionally comforting for the dying patient, as it directly and positively affects the quality of his or her remaining life.

And participating in and facilitating this process for a loved one is a gift for both the dying and the survivors.

Loved ones can offer support in many ways. Sitting quietly, listening, making suggestions all are ways to help. Sometimes help is simply practical, as in tidying up the space, finding necessary documents, helping with red tape. Knowing that there is assistance for the mundane allows the dying to address the profound. Each issue, large or small, becomes a marker in the patient’s transition process as it is resolved, and it signifies one less encumbrance. Patients report a feeling of relief that comes with a focus. Having a plan for their last days gives them a sense of control—of clearly seeing the path and how they will travel it. Markers along that path help them to detach, to move toward their destination freed of concerns that anchor them to this life.

Dying patients may need help discerning what they personally can do and what they need help with, but they must be allowed to choose steps that facilitate the process of detaching. They may ask the question, “What do I need to do now?” or recruit someone Continued on Page 16 ... www.sfms.org

Last Wishes

Evelyn’s Story of Graceful Surrender Guided Imagery and End-of-Life Issues

Leslie Davenport, MFT

M

ost seasoned hospital nurses would affirm the old adage that people die the way they live. If they have been fighters in life, they often push back on the dying process. A person who has cultivated acceptance brings that quality into the last phase of living.

Yet it is not always that simple. Knowledge of impending death typically amplifies psychological and spiritual concerns. A frequently occurring end-of-life concern can be seen by introducing you to Evelyn, who finds resolution through guided imagery.

Dying itself is not the issue for her, but she struggles to resolve relationship ties as part of letting go. And she discovers a surprising gift in the process.

Evelyn, an independent, educated woman, expresses herself with a tough refinement—a Katharine Hepburn elegance.

There is quiet power to her presence, unassuming yet with tangible authority rising from her life experiences. Living independently at eighty-seven, she has just arranged hospice care for herself on the advice of her physician.

She shares the characteristic of many in her generation, preferring to keep her medical details private. The stiffness in her walk and her pinched brow tell me that she is in physical pain. Evelyn displays a transparency I have witnessed in many people toward the end of their lives. Blue rivers of veins are visible beneath sheer, papery skin. And at times, her spirit flairs so brightly that I lose track of what she is saying.

“I’m ready to go,” she announces in a simple, matter-of-fact way. “Somehow I knew how to be born, and I’m confident that I know how to leave.”

It will not surprise me if Evelyn’s wish to release her body with simple surrender www.sfms.org

and natural timing come to pass. And yet one concern weighs heavily on her. She has found guided imagery to be a helpful tool to her over the years, and she asks if we can explore her issue using imagery.

“Most seasoned hospital nurses would affirm the old adage that people die the way they live.”

She worries about her grandson, Matt.

At twenty-seven years old, he remains the “lost child” in the family. He has struggled with addiction and has not established a solid career direction or stable relationship.

Evelyn has been a safe confidant for him, and she fears the impact of her declining availability. She has been a source of strength that may have helped him stay out of trouble. We begin the imagery session.

Relaxed, with eyes closed, she describes the scene that emerges in her mind’s eye.

“I’m in a forest glen with deep shades of green. It’s lush, carpeted with ferns and full of filtered sunlight. The air is comfortably warm, and very moist. It feels like late morning, maybe 11:00. I’m resting on a fallen branch that makes a natural bench. I hear a stream nearby, the occasional sound of insects and rustling leaves. It feels feminine somehow, and safe. It’s very nourishing.”

I encourage her to take time and enjoy the nourishing qualities. We pause together in silence.

“Just breathing the air feels like food.

The entire forest is breathing with me.” The nourishment from this place seems to ease her pain and her body softens.

I ask her if this is a good time to focus on her grandson, Matt. She agrees. “Allow an image to form for your relationship with Matt,” I say. In response, she feels a pull to explore a path through the trees and see where it leads.

“I’m entering a clearing, and there are two trees in the opening—a large redwood and a young seedling.” She focuses on the smaller tree. “This tree has had some branches broken off, and the trunk is a little crooked, but it’s really vital, healthy.” Sensing the connection to Matt, she smiles with relief. I invite her to say more about what brings a smile to her face.

“I know he’s OK. I trust that.” Her voice is clear and strong.

“What about the larger tree?” I inquire. Although nothing is visible in her demeanor, I feel her internal eyes moving to the other tree. This subtle attunement to Evelyn’s internal state feels similar to experiencing someone’s eyes on the back of my head before turning to look in their direction.

“There is a majestic presence,” she pauses before continuing, “a deep silence coming from the redwood.” Her voice sounds deeper, more resonant, as she speaks.

I encourage her to get acquainted with this powerful tree. “What else do you notice about this tree?” I ask.

“The tree is female, and she instructs me to look around at the field and forest.

The message is something like, ‘Look how things are being tended.’ It reminds me of a scriptural passage I haven’t thought about in years but I’ve always loved: ‘Consider the lilies of the fields, how they grow; they toil not, neither do they spin: And yet I say unto Continued on the following page ...

January/February 2009 San Francisco Medicine 15

Evelyn’s Story ... you that even Solomon in all his glory was not arrayed like one of these.’”

Somehow her face looks more radiant, as though the sunlight from this meadow were seeping though her skin.

She continues, “The redwood is telling me that Nature is the gardener. The trees have what they need—sunlight, water, earth, and air to thrive. The support for life and growth is abundant. There is no lack of what’s needed. No tree or plant relies on another completely, or on an isolated element. The nourishment flows in from everywhere.”

There are rich, long pauses between the sentences, a slow rhythm with these images and messages. As a way of integrating these images with her initial question, I ask her to tell me if this place seems related to her concerns about Matt.

“Oh, yes,” she replies. “It’s a message that Matt is taken care of. How can he not be, with the friends, family, and unexpected gifts from life he will discover? There is a natural cycle of things that come and go.

Perhaps my departure will open new possibilities for him that would not be available otherwise. It has been wonderful to grow near each other, but he doesn’t need me.”

She speaks this perspective without any sense of personal diminishment. There is no devaluing of the special relationship the two of them have enjoyed, just a simple acknowledgment that the understanding of how life goes on is so much bigger than she had considered.

“There’s so much life here,” she continues. She takes in long slow breaths, as if breathing in that nourishment again.

“And death too. If I really look, I see that there are leaves turning brown and dry, and new buds forming, and fully matured plants in the height of their life cycle. It is all so beautiful—the bud, the flower, the bare branch.”

I ask Evelyn if there is anything else waiting to be explored in the imagery, and she lets me know it feels complete. As we come out of the session, a sense of peace and relief surrounds Evelyn. She also looks tired.

She closes her eyes for a moment and somehow she looks astonishingly beautiful

to me. There is an expansive feeling in my chest that often arises when I see a particularly beautiful sunset.

We sit quietly for a few more moments.

The sunlight seems brighter in the patches on the floor, and I notice the breeze in the leaves outside the window. I gather my things and walk slowly toward the door. On a table is a bouquet of peonies beginning to fade, with some stems folded at odd angles in the vase and a few petals scattered on the tabletop.

As if on cue, one more petal falls off the stem. She turns to me, her eyes bright, and whispers, “That’s how I want to go.”

Leslie Davenport, MFT, is a psychotherapist in private practice in Kentfield, California, and also at the Institute for Health & Healing at California Pacific Medical Center in San Francisco. Evelyn’s story is reprinted from her upcoming book, Healing and Transformation Through Self-Guided Imagery, published by Celestial Arts.She can be reached at www.

LeslieDavenport.com.

Going Home Continued from page 14 ... to assist in making these resolutions occur.

For those dying, this process of “wrapping up” what is past empowers their movement forward.

In Angelina’s case, the ease of transition is dependent on knowing that loved ones will be all right once her death has occurred.

Reassurance about how survivors will cope, when offered honestly and directly, frees the dying person to move ahead in the process.

This type of open discussion also encourages friends and family to prepare themselves for the transition.

Rachael is eighty-seven and, although she has never been a wealthy woman, her life has been rich. A widow, she has three adult children and twelve grandchildren who love her deeply. She has spent a lifetime caring for her family and, through faithful church work, others. She is dying. True to her Depressionera childhood, her final wishes reflect her lifelong work ethic: that her financial debts be paid. Her last wish requires the cooperation of family members who honor her wish and carry it through.

Persons in transition frequently express

16 San Francisco Medicine January/February 2009

concern around physical matters. Many want to die in their home, where they are most familiar and comfortable, surrounded by loved ones as well as the physical reminders of a life well lived—of those they love and those who love them. If this is not possible, being surrounded by familiar objects—a favorite pillow, pictures, or a piece of furniture, may ease the way.

George, fifty-three, whose illness had compromised his mobility for years, asked that, upon his death, all the windows be opened so that his newly released spirit would be able to move freely, without barriers.

Special rituals—a certain hymn, a special meal, a poem—mark and enhance the approach of death while connecting the patient with loved ones who are close by, as well as those who cannot be physically present. These rituals serve to acknowledge the process as it is taking place, while providing an atmosphere of control, calm, and peace.

Ed, eighty-nine, is a child of what has been called the “Greatest Generation.” The husband, father, professional, and veteran has lived a long and full life. He has provided for his family financially and now what he wants most is to leave a legacy that reflects and honors his life. To that end, he has instructed that a substantial gift be made to the music program of his alma mater, establishing a scholarship fund for young musicians in his name.

Issues of legacy are more than financial.

An individual who is leaving this life wants to acknowledge and embrace a life lived fully and needs to know that he will be remembered. David, sixty-three, instructed that after his cremation, he wished to be taken on a drive through neighborhoods where he was happiest, finishing his physical journey with an inurnment and life celebration where friends and loved ones could toast his life and his passing. Those who lend support by embracing the rituals of these transitional journies with their loved ones are blessed with the legacy of increased awareness. There is pride in having honored the journey of their loved ones and having demystified the process for themselves.

Lynn Burns is an associate of the Sacred Dying Foundation in San Francisco. She is currently completing an MFA in creative writing from Mills College, Oakland. www.sfms.org

Last Wishes

A Last Wish, Realized One Patient Plants a Seed for His Friends and Family to Sow

Amanda Denz, MA

I

n July of 1995, just three months before his death, Ken Schwartz began an article in the Boston Globe Magazine with the following passage: “Until last fall, I had spent a considerable part of my career as a health care lawyer, first in state government and then in the private sector. I came to know a lot about health care policy and management, government regulations and contracts. But I knew little about the delivery of care. All that changed on November 7, 1994, when, at age forty, I was diagnosed with advanced lung cancer. In the months that followed, I was subjected to chemotherapy, radiation, surgery, and news of all kinds, most of it bad.

It has been a harrowing experience for me and for my family. And yet, the ordeal has been punctuated by moments of exquisite compassion. I have been the recipient of an extraordinary array of human and humane responses to my plight. These acts of kindness—the simple human touch from my caregivers—have made the unbearable bearable.”

The article continued to discuss the patient/caregiver relationship and the important roles compassion and humanity play within that relationship. His article, entitled “A Patient’s Story,” was met with a considerable response from the public. He began to receive phone calls and letters and was even invited on the Good Morning America show to discuss the issues he raised.

“He really focused on how important it was that his caregivers treated him with compassion—that made all the difference to him, and people could really resonate with that,” says Marjorie Stanzler, Director of Programs for the Schwartz Center and sister-in-law to Schwartz. “This all happened back in 1995, and I think he worried that www.sfms.org

with the changes going on in the health care environment, the humanity and the empathy would be taken out of health care delivery.”

A few months later, just days before his death, Schwartz planted a seed for

“‘He really focused on how important it was that his caregivers treated him with compassion—that made all the difference to him’” his family and friends to sow that would ensure that something was being done to maintain the integrity of the doctor/patient relationship.

“Literally, as he was dying in September of 1995, he called his lawyers into the hospital to amend his will,” says Stanzler. “He wanted to set up a center that, in his words at the time, would study the patient/caregiver relationship. That is the blueprint he left us, and based on his story we knew how important compassion was to him. I think, considering that he was heavily drugged and in pain, that it was amazing that he could even think beyond himself at that point.”

After Schwartz’s death, his close friends, his family members, and even some of his caregivers got together to figure out how to make his vision a reality. They created a board, they drafted a mission statement, and they set goals—that is how the Kenneth B. Schwartz Center was born.

“We took his seed of an idea,” says

Stanzler, “and made it into a mission, which is to promote compassionate health care and strengthen the relationships between patients and their caregivers.”

About a year later, the center held a fund-raiser that doubled as a tribute to Schwartz. They announced the center’s mission and goals and raised enough money to get things moving. Massachusetts General Hospital in Boston, where Schwartz received his care, offered them a room with a telephone, and Stanzler began working as the first full-time staff person.

The first project was to approach four different areas of Mass General and ask the caregivers what could be done to improve communication.

“They basically said, ‘We have really tough jobs, and we never have time during the regular work day to stop and talk about what we’re doing. We really want some kind of comfortable forum where we can get together and talk about issues, not clinical issues, but other issues we face as caregivers,’” says Stanzler. “So that is how the Schwartz Center Rounds were born.”

The Rounds are meant for all caregivers—physicians, nurses, social workers, and anyone else who interacts with patients in the hospital—to talk about the issues that come up in a supportive environment.

Topics may include how to deal with a noncompliant patient, or how to work with a patient who comes from a very different background, or what it feels like to lose a patient.

“We had a company do an independent evaluation of the Rounds,” says Stanzler, “and we found that caregivers felt as though they could communicate better with each other after participating in the Rounds.

Continued on page 19 ...

January/February 2009 San Francisco Medicine 17

Last Wishes

Luka’s Wish A Last Wish Granted in Both Life and Death

Shieva Khayam-Bashi, MD

L

uka was a strong, robust, healthy-looking fifty-year-old man. He was energetic and upbeat and always expressed words of hope and optimism to others. He had a deep faith in God and was not afraid to refer to his strength as derived from his relationship with God. His only wishes were to suffer as little pain as possible when his time came, and to enjoy some time with his wife and kids. He got both wishes.

Except for the fact that he had to speak through the use of a handheld electrolarynx, which he placed on his throat to produce an electronic-sounding voice that was sometimes hard to understand, one would not know that Luka had inoperable, terminal cancer. His vocal cords had been removed two years before due to laryngeal cancer, and he accepted his loss of voice gracefully. He grew adept at using his electrolarynx and continued to come to support groups, mainly to share his positive energy with others—his peaceful, calm, and happy demeanor was infectious.

After his laryngectomy, Luka did very well for two years—living life with family, being a source of positive energy to others, and generally being content and grateful for his life. Then one day, he noticed bleeding at the site of his stoma, which turned out to be a recurrence of his cancer. He was admitted to the hospital and, sadly, the CT scan of his chest also revealed a new, large tumor that was encasing his superior vena cava and aorta. The ENT surgeons and oncologists agreed that there was nothing more to do—no more surgery, no more radiation, no more chemotherapy. This is when they told Luka that his “outlook was very poor.”

While it was true that his physical outlook was bleak, it was to everyone’s surprise that Luka’s spiritual outlook remained positive,

peaceful, and centered.

Ever the kind and grateful soul, Luka continued to smile as he would push other patients’ wheelchairs in the halls. He always offered help to our staff, and he would al-

“We might all be Luka’s students, if we watched and listened closely and were prepared to learn some things from his example.” ways tell us what a beautiful day it was. He spread kindness and joy to others around him as a natural consequence of his positive and kind presence. Luka was a beautiful, living, breathing, almost-always-smiling, electronically speaking reminder of how one’s strength of spirit can carry one through the most difficult of times, and how it can change others in a positive way. Even as his body was terminal, Luka’s spirit was thriving as he so generously gave of it to others.

The day before Luka was to be discharged from the hospital, he asked if there was “anything else that could still be done” in terms of treatment. I arranged for a team meeting for Luka, which included his ENT resident and medical student, his oncology fellow and medical student, his oncology social worker (who had known him for years), our nurse practitioner, and me. At the meeting, Luka found that he had an audience, and he was pleased. I could also see that this was going to be a real learning experience for both of the young students, and I was glad they would have this chance

18 San Francisco Medicine January/February 2009

to meet this remarkable man who would be their teacher. We might all be Luka’s students, if we watched and listened closely and were prepared to learn some things from his example.

Luka’s questions were answered in a clinical manner. The ENT resident spoke about how the tumor’s location was too precarious to operate, since it encased his major blood vessels. The oncology fellow spoke about how there was no more radiation or chemotherapy that would help him anymore, that the focus now was on assuring that he had comfort and quality to his life, and that he was glad he would go home to be with his family the next day. The social worker spoke of the follow-up plans with Luka’s primary doctor and with the support groups, and that she would continue to check in by way of phone calls. Luka was disappointed, but he did not let it show much. He actually thanked everyone for their kindness and their help. It appeared that the meeting was over.

I felt the need to offer Luka a chance to speak just a bit more, as I sensed that he might have more to say. I asked if he could tell us about how he felt: “Luka, how are you coping with this? Where do you get your strength? What do you hope for?”

Luka now had the stage; the spotlight was on him. He looked at me and smiled, cleared his throat, held up his electrolarynx device to his throat, and began: “Well . . . I am always thankful. I am coping with God’s help. I have had a beautiful life. I have always known that the reason for my life is to give comfort and joy and kindness to others, because that is what God gave to me. I cope by trying to thank God every day, and by trying to help other people by being positive.

I talk to God every day, and I thank Him for www.sfms.org

all these gifts in my life. I have been blessed.

I have a lovely wife and kids, and lots of friends. I did not want cancer, but I have it.

It does not have me. I have my faith in God, and that is my strength. I am not afraid to die. I want to meet my Maker. I have done what I needed to do here. I thank you, all my doctors and my social worker and nurses, for all of your help. But now I just hope to be able to spend time with my wife and kids.

And I just hope I will not die with pain or suffer at the end.”

He told us more about his childhood growing up in Samoa, about things that his mother taught him on the island about God and the reason for his life, and about his greatest gift in life being his faith and spirituality. He did not talk much about how hard this cancer journey had been, but rather he spoke of how his coping had been through practicing spiritual principles such as faith, patience, gratitude, peace, acceptance, joy, kindness, and love. The cancer experience had been a painful one, but for Luka it had been one of growth closer to God. I watched Luka closely as he spoke, and he actually appeared to be glowing, radiating, beaming with light. His skin looked healthier and his smile radiated more brightly, and there was an energy of peace about him that was greater than anything I had seen in him before. He was having his moment, and he was giving to us a gift—and as I looked at the students and residents, I saw that they were fully receiving the gift of what he had to say. It was an extraordinary thing to watch them, captivated by Luka’s articulate manner of expressing gratitude, peace, and clarity, after being given the terrible clinical news that no one would ever want to hear. The oncology fellow’s pager beeped as Luka was speaking, but, thankfully, he pressed the button to quiet it without shifting his gaze away from Luka’s eyes, and he did not get up from his seat. He knew this was a moment worth experiencing. Luka was teaching us about the reality—not just the hope or the possibility—of having peace at the end of one’s life.

Late that night, around 2 a.m., I was called by my nurse, who said that Luka had suddenly coughed up bright red blood and they had rushed him down to the Emerwww.sfms.org

gency Department. Fifteen minutes later, the ED attending called to tell me that Luka had expired rapidly. They did not have the chance to “do anything,” but he passed away peacefully and quickly and did not appear to have pain or to suffer. Luka got his last wish.

I called his wife and told her the news.

She was shocked and not shocked at the same time—she explained that, after our team meeting, she and the kids had picked Luka up at the hospital and taken him out for a beautiful picnic in a nearby park on that warm, sunny day. “He was glowing,” she said. “He was so peaceful and content and calm, he actually looked like an angel.”

Afterward he came back to his room on our unit, and he was later seen in the hospital chapel that night. His wife got a phone call from Luka himself in the ED, and he told her, “I am bleeding, but I am OK. I love you.” Her friend heard his voice also, as he told this to them just minutes before he died. The mystery is that Luka did not call from our unit, nor could he have called from the ED Trauma room (there is no phone), nor did he have a cell phone. No one could explain how he could have called, but his wife and friend both heard his voice on their phone moments before he died.

Thankfully, Luka’s last wishes were both granted—miraculously, I think. He spent beautiful time with his family. He did not suffer pain when his time came.

He had expressed his gratitude and love to all who needed to receive it. It seemed to be a kind of miracle that Luka was finally granted his last wish to experience a loving and peaceful death. But I think the greater miracle was that Luka had been granted his wish to live such a loving and peaceful life, before he died.

Shieva Khayam-Bashi, MD, is director of the short-term skilled nursing facility at San Francisco General Hospital.

A Last Wish, Realized Continued from page 17 ...

They felt more as if they were a part of the caregiving team, they felt better able to communicate with patients’ families around nonclinical issues, they felt less stressed and more compassionate, and they felt that they were not alone in struggling with these issues.”

The Schwartz Rounds are currently offered at 160 sites in 29 states, including San Francisco’s California Pacific Medical Center. The Schwartz Center itself has grown to nine employees and a board of directors that has expanded beyond those who knew Schwartz to include many leaders in health care. The Center now also boasts a number of other offerings, including a grant-giving program, in addition to the Rounds.

In 2005, the Schwartz Center celebrated its tenth anniversary. As noted on its website, “Ken could not have imagined the breadth of support accorded the Center in its short history. The Center seeks to sustain Ken’s vision of a more compassionate health care system, and has become a catalyst for change in health care, creating pioneering programs that teach caregivers to combine science with humanity and take pride in the ability to show compassion.”

The Schwartz Center is a beautiful example of a last wish realized.

Physicians interested in bringing the Schwartz Rounds to their hospitals should get in touch with the Schwartz Center directly. Visit online at www.theschwartzcenter.org.

January/February 2009 San Francisco Medicine 19

Last Wishes

Love and the Bolinas Lagoon A Story of Last Wishes and Ethical Wills

Nancy Olin

W

hen my late husband, Chuck Olin, passed away ten days after his sixty-eighth birthday, on January 20, 2005, he left an ethical will.

The Hebrew Bible alluded to ethical wills 3,000 years ago in Genesis 49, where Joseph gathers his twelve sons and tells each of them a prophetic oracle about themselves, blesses them, and then dies. There are similar references in the Christian Bible (John 15–18).

Scripture in John 15:9 says, “As the Father hath loved me, so have I loved you: continue ye in my love.”

Originally, last wishes for loved ones were oral stories passed down mostly father to son, which have evolved into the written word to be shared with friends and family. These wills do not involve money or estate but speak to what is within our hearts, our last wishes for those we love.

From Chuck’s ethical will written on August 28, 2004: For Nancy: So many years together, so much shared, hard times and wonderful times. I want to give you good health for a long life, and a way to be peaceful while churning through your creative thrusts into the world. To respect yourself for your very special traits, for how much you give.

You astonish me with your insights, your writing, your advocacy for others. What a big heart you have, and I have been the beneficiary of that. But mostly, I want you to trust yourself for all you are, not having to do too much to keep reproving it, and having boundaries that protect you from giving too much away. I leave you with my hope you will, in your own way, love life, live it to the hilt, keep it special, and remember all the wonderful moments that we’ve shared.

Chuck was a beautiful man who left so much. There isn’t a day that goes by that I am not reminded about him by something. The Jewish faith honors in death by saying, “May

his memory be a blessing.” Each day I am reminded how joyful it was to know Chuck and what an honor it was to have loved him and to have been loved by him.

Chuck was a filmmaker. He began his

“These wills do not involve money or estate but speak to what is within our hearts, our last wishes for those we love.” film career in the late 1960s, coproducing with his partners at the Film Group award-winning documentaries about social unrest of the times.

In 1974 Chuck began his own production company, and for more than twenty-five years he produced and directed documentaries across a wide range of subjects, often producing films that spoke to the underdog. Whether dealing with human rights, cultural rights, teen pregnancy, or the power of myth and memory in a country such as Israel, Chuck was drawn to voices often not heard.

About ten years ago, Chuck and I moved from Chicago to Stinson Beach, California, a small coastal town bounded by the Pacific and Mount Tamalpais. I was suffering from chronic lymphocytic leukemia and said to Chuck, “When I have treatment or if I’m going to die, this is the place I want to do it in.” Before I said those words, my primary role had been to support Chuck’s work, standing by him, offering insights, and sometimes working closely with him on his creative and social ideas. That’s not to say I didn’t work or wasn’t a strong, independent woman, but I was devoted to Chuck.

In 2001, I needed to begin chemotherapy

20 San Francisco Medicine January/February 2009

treatment. It was during this time that Chuck was asked to do a film about the Bolinas Lagoon, the tidal estuary that connects Stinson Beach and Bolinas. For the past twenty years many locals and experts have believed the lagoon is slowly being destroyed, gradually filling in with silt that is causing the death of many species. Chuck had found yet another underdog in the Bolinas Lagoon, and he became dedicated to protecting it. His hours were spent working on the project, filming birds, people, and the beautiful lagoon itself.

He grew to know local fisherman, scientists, biologists, Audubon Society members, and Golden Gate National Seashore folks. His days were exciting and hopeful.

After six months of treatment and about a year of slow recovery from being neutropenic, I began to feel stronger, and our hopes for travel and a healthy life seemed around the corner. Yet over the years, in small ways, Chuck was also showing signs of physical troubles. Climbing hills caused chest pains, capillaries in his eyes began to rupture, and his legs were weak. Multiple examinations and tests failed to diagnose his condition. Finally, plural effusions followed by further tests revealed the diagnosis: amyloidosis. We made a final trip to Mayo Clinic after Thanksgiving 2004, when they told us to go home and enjoy the end. Chuck’s last wish was to complete the film about the Bolinas Lagoon.

Unfortunately, the end came too soon, and Chuck died before he could complete the work. The creative process of finishing filming, editing, checking references, and pulling it all together into a coherent story remained to be done. We scattered his ashes into the lagoon with the tide coming in—the sound of bagpipes playing, the pelicans soaring overhead, and the seagulls crying out their calls.

Continued on page 22 ... www.sfms.org

Last Wishes

An Artist’s Legacy Family, Friends, and Community Carry on the Work of a Loved One

David Washer

L

ast April, my wife Pam and I had just arrived on Tomales Bay for a muchneeded romantic getaway. Sun and wind, books and magazines, a weekend with no phones and nothing to disturb us—we were all set to relax.

A policeman knocked on the door and said there had been a terrible accident. I fell to my knees, and nothing has been the same since.

My daughter, Phoebe Washer, had fallen from a cliff on the Marin Headlands. There is no easy way to explain how my world was turned inside out, to explain the feelings, the grief, and the insanity that engulfs your family after a traumatic death. There is no easy way to explain what it is like to lose your daughter months before her twenty-first birthday.

They say the healing will take years, and I’m not sure that the dark center in my heart will ever heal. But for all this pain, loss, and confusion, there is another side that I never imagined possible.

Phoebe touched countless people in her tragically short life, and since her death she has reached even further. She was an inspired daughter, friend, and artist, creating in every aspect of her life, from teaching small children how to draw to decorating a cake. It was all an inspired act of love, devotion, and creativity. It has been an inspired path that we have begun in following Phoebe’s dreams and wishes. She was too young, and her death too sudden, to have expressed her own “last wishes,” but what follows are a few things we believe she would have appreciated.

Our Community Comes Together

Within days after Phoebe’s death, we decided to stage her memorial at a spot on the top of Sonoma Mountain above Petaluma, where she grew up. Standing like www.sfms.org

an enchanted cathedral is a 120-year-old olive orchard, the trees as tall as oaks. It was a place Phoebe loved, sitting in the magic light of these trees and looking at the town below.

It was not difficult to transform this place into

“It has been an inspired path that we have begun in following Phoebe’s dreams and wishes.” a sacred sanctuary for the memorial. Phoebe’s friends and family came the day before and hung garlands, lanterns, photographs, and paintings; they made altars, fire pits, places to sit or play music, and tables to hold food. This first memorial was for family and friends, and more than 200 people attended.

A few months later we held a service, called Celebration of Life, at the Phoenix Theatre in Petaluma. More than 800 people attended. Again, friends transformed the old theater with decorations, altars, and flags. Outside, the local street artists all collaborated with their arsenal of aerosol cans to create an epic mural. Community is a powerful and touching thing. It reminds us that power and healing in our lives is held within the love and support of those around us. The loss of my daughter has turned my world inside out, but when I spoke at both the memorial and the Celebration it felt as though I was embodying the force of things much greater than me.

A Virtual Living Memorial

Phoebe’s website barely existed when she was with us, but after she passed friends began to help redesign it and create a community-

based forum. People began to join, and the membership grew to several hundred.

People posted pictures, poetry, events, and words of encouragement. There are blogs and forums. It’s an intimate community, talking and sharing and supporting. At this point we have 198 members, 491 photos, 19 discussions, 8 events, and 18 blogs. On the day that an art blog announced Phoebe’s art show in Los Angeles, more than 700 people visited the site—not only those close to us but also people from places such as Iraq, China, and Russia.

Much of Phoebe’s artwork and journals were about words and poetry. Writing a blog is new challenge. Writing about this is a personal and vulnerable experience, but after appreciated feedback I have found solace in sharing my thoughts and feelings with those who loved and cared for Phoebe. Writing is a powerful aspect to honoring her memory.

Art Shows and a New Foundation

We have held two shows of Phoebe’s art, the first at a gallery in L.A. and another at the new Community Art Center in Petaluma. At both shows we sold limited-edition prints. The proceeds from the prints go into a 501(c)(3) foundation we’ve started called the Phoebe Washer Foundation for the Arts. Its purpose is to help other young artists with grants and scholarships.

Phoebe was a truly gifted artist. She created art to express and to honor the world she lived in. She had sold most of her pieces, and it was a project in itself to gather these pieces and archive them. But we managed, and the L.A. art scene embraced Phoebe’s show, and the Los Angeles Times ran an article about her. It was like saying, “See, she would have made it!” I look back and I see her in room Continued on the following page ...

January/February 2009 San Francisco Medicine 21

An Artists Legacy ... drawing, painting, and writing—just my little girl doodling and sketching. Now these pieces have transformed into something larger and more important. People call them “healing.”

If art is only as good as the quality of its lasting effect on those who are experiencing it, then Phoebe’s art is of the magnitude of some of our greatest painters.

Memorial Tattoos

There are now twenty-three of us who have dedicated a part of our bodies to Phoebe’s art in the form of tattoos of her work. Most of us had never thought of getting a tattoo before this. It’s amazing how significant her art becomes when it is translated this way. Each person has chosen something from Phoebe’s collection and has made her and her art a part of their lives.

It is a mystery to me how the components of ink on body blended with spirit and art can create such an intimate connection between our hearts and the talents and gifts of my daughter. It is also another side of community that marks us with something significant and beautiful. We share this courageous task of honoring someone we love. The tattoos are just one small but beautiful proof of this. From that knock on the door till now, I carry a scar that is dark, profound, and beyond description; these tattoos on my arm draw attention to the beautiful gift that is also part of that scar.

Honey and Bees

Phoebe loved bees. She collected beerelated things until her thirteenth birthday, when she exclaimed, “No more bee gifts!” She painted them as a symbol of golden light and the profound mystery of nature. The transformation we created at the olive orchard for her memorial still lingers in the light of those trees, and at the edge of this place we have set our apiary. There are now two boxes of 100,000 bees thriving in a sunny spot overlooking the town below. We began the hives as a gift for our friends who were so gracious to offer us this place, but it soon became obvious that the bees were something more than a gift or hobby. It became a place to go, a sojourn, a small pilgrimage; and the hives transformed from buzzing boxes of beeswax and brood into a living altar.

At first we nervously came to visit and

check on the bees; the health of the queen, the brood, the honey; to feed them, clean them, touch them, steal some honey from them.

It was a learning curve and a joyous event I shared with my son, but it grew into a family affair and part of our community. We are not religious folk; we did not raise our children in the church, and so that has not offered solace for our grief. But I will say this: No matter what your spiritual calling or philosophy, losing a child makes you a deeply spiritual person.

Your heart and soul reach toward a spirit that is intimately connected to your being with your daughter. It is mystery and life unfolding that cannot be explained or understood with language. Even the most jaded, sarcastic agnostic becomes aware and humbled. Funny how staring at those bees, working with them, handling them, trusting them, brings up the sensation that there are too many things in this world that just cannot be explained. We are all part of a complex web of changing events that science and religion can’t describe.

Just look at those bees traveling up to two miles with pollen that weighs twice as much as their bodies. Building this fantastic complex community. A million trips to a flower for a pound of the sweet stuff to stick our fingers into.

We harvested enough honey this year to offer it to our friends and family to taste and sample. It was dark and delicious, made from star thistle and wildflowers. Sweet but with a clean, earthy flavor that made you feel, for just a moment, that everything was going to be OK. We call it “Phoebe’s Best Honey.” Next year we’re adding two more hives. www.phoebewasher.com

Love and the Bolinas Lagoon Continued from page 20 ...

Since I first began my relationship with Chuck, I felt safe, as if I had made it to the finish line, home at last. When he left this earth, everything in my world seemed to change. Dreams of who I was and who we were together vanished in a nightfall. There was insanity to who I became, a living nightmare.

A week or so before Chuck died, when he was taken back to the hospital, I said to him, “If only we could show our life over the last twenty years on this hospital wall and watch our time together. I want so much to see it all

22 San Francisco Medicine January/February 2009

over again.” But life doesn’t work that way.

You can’t go back. All those sweet and bitter times are just memories.

I recently looked in an old telephone book where I had written, on December 27, 2004, “Every day is a test and you are strong.”

I remembered Chuck’s ethical will and his last wish—that I would express my own creativity. I resolved to complete the film about the Bolinas Lagoon. I knew that Chuck’s former partner, Bill Chayes, would need me to move ahead with the film, to help with funding. I knew I wanted to hold to what Chuck and I had discussed so often while he collected research on the film—that his spirit and what lay close to his heart regarding the lagoon’s story be told.

Bill and I began to collaborate, but the process was far from easy. We battled on many fronts. Yet I was strong in keeping Chuck’s vision of the importance of place and the need to fight for what is within our hearts. Also vital was that the story needed to show the democratic values regarding the process of this fight and how democracy works within communities like Bolinas and Stinson Beach—and communities like them throughout our country, where similar environmental dilemmas are taking place.

This process took four years, with emotional ups and downs that were excruciating.

I wanted so many times to leave the project.

Yet, slowly, I began to realize that by creating a legacy for my beloved late husband, I was creating a legacy to myself, to my own inner strength and to my honor. I fought for how I knew Chuck felt deeply. I fought for how I imagined he would think. I was relentless at times. I didn’t look back. Last winter I was almost paralyzed by the thought of having to raise more funds; it was so personal it all seemed relentless. But I did it, and the funding continues, now even without the asking.

Bill and I just managed to enter the film into the 2008 Mill Valley Film Festival. Call It Home: Searching for Truth on Bolinas Lagoon was chosen tenth out of 400 documentaries.

San Jose University has asked for copies for its Environmental Department. It has been on KQED and will have National PBS showings. The dance has begun, the film already having a new life; and Chuck’s last wish has been fulfilled. www.sfms.org

Last Wishes

Creating a Legacy What Can Be Done at the End of Life?

Michael W. Rabow, MD; David Spiegel, MD; and Ernest H. Rosenbaum, MD

M

r. L was a seventy-one-year-old retired engineer with advanced prostate cancer, widely metastatic to his bones. He was initially diagnosed fifteen years prior and treated with radical prostatectomy. He had a recurrence four years later and was treated with intermittent androgen deprivation. Years later, when his cancer became hormone independent, he was treated with chemotherapy. Ultimately his cancer progressed on chemotherapy, and he elected to discontinue active treatments.

He was referred to an outpatient palliative care consultation service. With mild bony pain well controlled on oral longacting morphine, his concerns centered around establishing a plan for the care of his wife after his death. She had Alzheimer’s dementia and they moved together into an assisted-living facility six months prior to his death.

Mr. L had two daughters and a son.

Four months prior to his death, his goals included walking his younger daughter down the aisle at her wedding. He wished also to organize all the family and vacation photographs he had taken during the years his children were young. He had approximately 5,000 photographs in boxes and spent much of his remaining time in the months before his death putting his photos into albums and giving these albums to his children and grandchildren. Each album was presented at a family dinner and was accompanied by the stories behind the photos, recalled by the patient, his wife, and his children. *** “Death is like an earthquake. You know it’s coming, but you don’t know when or where.”

The timing of death is unpredictable, www.sfms.org

but its inevitability is clear. We all know we should prepare for it, but somehow it is always easier to put off preparations until tomorrow. Only 15 to 20 percent of Americans have signed living wills or advance

“At the end of life, important activities can help fill and even transform the time when someone is dying.” directives. Most Americans have difficulty coping with the idea of their own mortality, much less preparing for it.

This may be changing now. Over the last years, end-of-life care has changed dramatically. A century ago, there was relatively little that could be done for dying patients. Compassion and very basic symptom management were all that could be offered.

However, over the last forty years there have been remarkable improvements.

Technological advances have occurred in the treatment of medical problems, and the field of palliative care has been developed.

Palliative care is interdisciplinary care focused on quality of life and comprehensive symptom management and can be offered through hospice teams or hospital-based or outpatient-based palliative care teams.

Both palliative care and hospice have an extensive evidence base demonstrating the quality of care they provide as well as epidemiologic data showing the growing use of these services for patients with both terminal and serious chronic illness. These

advances in medicine have proven the value of careful planning for the final weeks and days of life. The vast uncertainty of death can be tamed through careful planning for end-of-life care.

It is difficult to determine the exact time that the end of life begins. However, clinical judgment and published guidelines can help give a practical estimate.

Most patients and families wish to discuss prognostic information and want as accurate and realistic information as possible.

With such information, patients and their families can make the best decisions for themselves, including doing advance care planning—thinking about what care patients want under various contingencies.

In addition, patients can pursue activities that help promote their own wishes for how the end-period of their life will proceed and that help achieve closure. Such end-of-life tasks include completing legal documents, updating wills to reflect current financial and emotional wishes, reconciling with estranged loved ones, and arranging for the disposition of personal property, including items of emotional importance.

At the end of life, important activities can help fill and even transform the time when someone is dying. Unless a person has a sudden, unpredictable death from an accident, heart attack, stroke, or a catastrophic life event, there is a period of what may feel like “waiting time,” especially for patients, family, and friends, during the dying process.

The dying process can extend for days, weeks, or months. The patient has an illness that will likely cause death, such as cancer, stroke, or end-stage heart or lung disease.

In this situation, patients typically experiContinued on the following page ...

January/February 2009 San Francisco Medicine 23

Creating a Legacy ... ence many emotions, including fear and sadness, symptoms from the disease (as well as from its treatment), and physical debility, requiring progressive supportive care from the medical team, family, friends, and caregivers to reduce symptoms and maintain quality of life.

The experience of seeing a loved one go through the final stages of the dying process with life slowly ebbing away daily, knowing that no medical treatment can reverse the process, is profoundly difficult but can be ameliorated with the knowledge that symptoms are being maximally treated and with the hope that some important emotional and existential growth is still possible. For many, bringing closure to important interpersonal relationships is key. Ira Byock has described statements that can help bring closure to relationships at the end of life: “Forgive me,” “I forgive you,” “Thank you,” “I love you,” and “Good-bye.”

Some have described this time as the “endless hours.” Others find deep personal transformation during this period. While music, books, and movies may provide entertainment or distraction, for many during this time, personal and creative projects can help bring a sense of satisfaction, closure, and peace. Crucial to the meaning of these times is the recognition that the dying have much to give to the living, an opportunity to leave them with memories of their love and wisdom. These projects are often referred to as “legacy” activities and have demonstrated efficacy in randomized trials.

H. M. Chochinov has developed a program called “Dignity-Conserving Therapy,” where the process of tape recording a patient’s life history showed benefits for patients at the end of life—and for their families. It helped the dying person in reevaluating his life and invited him to play a positive role in his own dying, rather than just being a passive recipient of endof-life care.

Other examples include the Legacy Project, which creates a life legacy for the patient, family, and friends by bringing together examples of the family’s history, memories of special events, as well as a review of the family’s life story (see also www.cancersupportivecare.com). In the

Legacy Project, the patient can record expressions of thoughts, values, jokes, and knowledge of happy and sad events that can be of importance to future generations—a gift of memories from one generation to the next.

Examples of legacy projects include: • An ethical will: a written or dictated record of family and ancestor stories, religious philosophies, comments about hope, and thoughts about the legacy one wishes to leave for family. This type of activity dates back some 3,000 years and is described in both the Old (Genesis: 49) and New Testament (John:15-18), as well as in numerous other cultures.

• A family tree: an organized outline, often with pictures, of family members and ancestors including marriages, births, deaths. This may include a medical history as well.

• A family history recording: written, audio, or video recordings of the family history, with stories and memories of the past and of current generations. This can often be made as a group during family celebrations, such as anniversaries or birthdays.

• Scrapbooks: an album or book with pictures, literature, documents, and articles about the family history and important family events, travels, or special occasions.

• Legacy of love: documentation of planned social, legal, financial, and endof-life arrangements. This can be very important in reducing confusion when a death does occur in the family, as preparatory guidance, directions, and planning can avoid distress and uncertainty after the death of a loved one.

The goal of the Legacy Project is to enable individuals and families to come to a clearer understanding of the meaning of their life, history, loves, and relationships and to capture the memories of the past in a concrete way that satisfies the human need for symbolic immortality.

Many people hope for some form of future immortality as a representation of the meaning of their life, philosophy, deeds, and accomplishments. “Symbolic immortality” refers to what endures from our lives after death. It consists of the thoughts, deeds,

24 San Francisco Medicine January/February 2009

achievements, and gifts of our lives. The hope is that, through symbolic immortality, we can live on after death in the memories of family and community. Symbolic immortality can be expressed in numerous ways: • Biologic symbolic immortality: living on after death through immortality in memories or the continuity of a family’s heritage for those with children.

• Theological or religious immortality: the belief in life after death as practiced in many cultures and religions. The afterlife with an immortal soul is an ancient theme, typically involving death, rebirth, and resurrection.

• Creative symbolic immortality: creating art, music, or literature; making scientific discoveries; and donating to charity are forms of creative symbolic immortality.

• Symbolic immortality in nature: nature is an ongoing, limitless process that will survive forever. There is an old Japanese saying: “The state may collapse, but the mountains and rivers will remain forever.”

Optimally managing dying patients’ physical symptoms is at the foundation of good medical care. Medication, physical therapy and massage, psychotherapy and support groups, and complementary and alternative interventions all may play a role. In addition, at the end of life, patients may face deep fears, sadness, and loneliness. The medical team, family, and friends can help with efforts to reduce anxiety, distress, and isolation. Helping patients seek reconciliation and closure of key interpersonal relationships is typically important. Encouraging creation of a legacy may be particularly useful in the face of existential challenges at the end of life.

A life review allows not only a reassessment of the good parts of life but may facilitate growth and psychological maturation, as well as spiritual transformation.

Michael W. Rabow, MD, is Associate Professor of Clinical Medicine, Department of Medicine, at the University of California, San Francisco. David Spiegel, MD, is the Willson Professor and Associate Chair of Psychiatry and Behavioral Sciences at the Stanford University School of Medicine. Ernest H. Rosenbaum, MD, is Professor of Medicine, Department of Medicine, at the University of California, San Francisco.

References available online at www.sfms.org. www.sfms.org

Last Wishes

The Last Lecture Legacies, Living Fully, and The Last Lecture

Steve Walsh, MD

H

ow do we find meaning in the face of inevitable death? How do we keep living with engaged, vivid experiencing before we die? What can be our legacies to others before and after death?

How do we realize our best childhood dreams? A remarkable best-selling book addresses all of these questions and more.

This article reviews some of the concerns of that book, describing useful aspects of the author’s observations.

As a boy during World War II, I saw a picture in Life magazine showing a cooleyed Polish Catholic priest in a fenced area outside Warsaw, “awaiting execution” by the Nazis. It was a haunting photo evocative of the horrors of that war and of man’s inhumanity to to man. The priest appeared aware of both camera and impending death, gazing into the lens with intense interest and consciousness of his final few minutes of life. Fear was not apparent. He seemed very much in the moment, living what remained of his life.

Psychiatrist Victor Frankl passionately described his own World War II near-fatal concentration camp experiences in Man’s Search for Meaning. He described the value of discovering a sense of immediacy and meaning in living and suffering even in seemingly hopeless circumstances. Even with inevitable death, one might be free to choose an attitude toward a dreadful situation and thereby salvage meaning in that.

He showed that finding such meaning also may have survival value.

Stanford psychiatrist Irvin Yalom has written extensively of the crucial importance while living of committed engagement with relationships, creative activities, and projects about which one has important feelings, to maintain a sense of meaning www.sfms.org

even in the face of life-threatening illness and approaching death. During times of anxiety about the inevitability of death somewhere down the road, I often have thought again of the Polish priest “awaiting

“How do we find meaning in the face of inevitable death?

How do we keep living with engaged, vivid experiencing before we die?” execution” as the fate of all of us sooner or later, as perhaps our universal existential situation, as we all must eventually die.

Just as “to be hanged at dawn focuses the mind,” the awareness and acceptance of inevitable death may enhance the quality and intensity of our living here and now and catalyze the completion of important tasks and unfinished emotional business.

The recent best-selling The Last Lecture, by the now-deceased Carnegie Mellon Professor Randy Pausch, describes vividly his experiences continuing to live intensely while dying of pancreatic cancer. Pausch was a professor of computer science, human-computer interaction, and design.

He was the creator of the Alice interactive computing program, which is being used by students worldwide. This is part of his professional legacy.

Professor Pausch gave his last Carnegie Mellon lecture on September 18, 2007, before a packed auditorium. Titled “Really Achieving Your Childhood Dreams,” the lecture discussed Pausch’s lessons learned

and gave advice to students and colleagues on how to achieve their own personal goals.

He died of his pancreatic cancer some months later at age 47. His last lecture was widely viewed on YouTube and is still available there.

He was able to write a book about his last lecture in 2008, prior to his death on July 25, 2008. The book is a remarkably interesting chronicle of his thoughts and experiences, knowing he would die of cancer within a few months. A dedicated teacher, husband, and father of three small children, Professor Pausch eloquently describes the construction, content, and meanings of his last lecture as part of a set of legacies he wanted to leave mainly for his children but also for his students, colleagues, and finally for all of us who would read his book or view his last lecture on the Internet.

Dr. Irvin Yalom has referred to such a process as “rippling,” meaning that each of us creates (with or without our conscious intent or knowledge) “concentric circles of influence that may affect others for years, even for generations.” The effects we have on other people are “in turn passed on to others, much as the ripples in a pond go on and on until they’re no longer visible but [are] continuing at a nano level. The idea that we can leave something of ourselves, even beyond our knowing, offers a potent answer to those who claim that meaninglessness inevitably flows from one’s finiteness and transiency.” Pausch was conscious of this process. He states that “I started to view the talk as a vehicle for me to ride into the future I would never see.” Perhaps we all have what research psychiatrist Robert J. Lifton calls the “need for symbolic immortality,” that we will live on after death Continued on page 29 ...

January/February 2009 San Francisco Medicine 25

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www.sfms.org

Last Wishes

Growth and Peace at the End of Life A Last Wish That Is Possible

Michael Rabow, MD We live in times not our own.—Pascal

H

ope has been defined as “what’s possible.” A short but profound definition, as the end of life brings about many losses and makes many things impossible. Dying people often lose function (working, walking, and taking care of their own activities of daily living). People at the end of life are losing relationships with loved ones, losing a future. And yet, for many at the end of life, growth is still possible.

At UCSF, in addition to our nationally recognized inpatient palliative care service, we have developed one of the leading outpatient palliative care consultation services, called the Symptom Management Service (SMS). The SMS sees patients with cancer at the Helen Diller Family Comprehensive Cancer Center. Most of our patients are actively engaged in treating their cancer.

Inevitably, though, some cancer treatments fail and the patients come to face the end of life.

Some find hope in small things: a good day, a sunset, lunch with a friend, a moment of physical comfort. Some find hope is deep things: existential meaning, spiritual transformation. For many, there remains the hope of growth at the end of life.

Mr. A was a forty-five-year-old man with aggressive squamous cell carcinoma of the scalp. As is often the case with head and neck cancers, Mr. A’s treatment required aggressive surgery that left him with pain and disfigurement. His skin did not heal well. The need for radiation worsened the problem and the pain. Throughout, he was forced to rely on strained relationships with his family, including his mother, father, and sister, with whom he had very troubled relationships. Initially, despite the seriousness www.sfms.org

of his illness, he seemed unconcerned about how to relate to his eight-year-old son, who lived mostly with his ex-wife.

At the onset of his struggle with cancer, Mr. A was not unusual. Many suffer great

“People at the end of life are losing relationships with loved ones, losing a future. And yet, for many at the end of life, growth is still possible.” pain. Many have fractured relationships with parents and children both. What became extraordinary, however, was how he grew.

With his initial cancer, he was depressed, in pain, nervously and compulsively tapping at the place on his forehead that had been spared the knife. He had not talked to his son about his cancer. He could only complain about his mom—even the dishwasher she had bought him to help was a symbol of long-established patterns and attempts at control. He was angry, demanding, needy.

He wanted to be left alone. He was emotionally challenging to my team—making demands that we met through significant effort, only to have him reject them once the service or medicine or assistance was in place, whether it was housing, home care, help with documents, insurances, finances, feedings. He never really cooperated in doing the physical therapy for his jaw and, as a result, he could not eat and did not seem to want to talk much.

Then he had a seizure and we all were saddened by the reality that his cancer had metastasized to his brain—just a small, solitary lesion, but horrible news. We dreaded talking with him about it. Would he stop all the treatments and the care? Would he leave his son without any communication?

Would he harm himself?

Instead, he turned and faced his cancer and his losses. With a clear mind and a focus we had not seen before, he investigated the methods and strategies to treat his brain metastasis. We helped him coordinate with neurosurgeons, neuroradiologists, neurooncologists, head and neck surgeons, and oncologists. His attitude was extraordinary.

His tolerance for the increasing care he required was growing. He began regular meetings with his son and talked some about his cancer. He figured out a way to tolerate his mom when he needed to. His sister got involved. He started doing his exercises and got back to eating and even gained weight.

We were astounded by his transformation.

Then he had a massive stroke—new metastases in his brain and spine. Now, even more calmly then before, he queried us and his other doctors about the wisdom of treatments. What could be done to allow him to walk again? He moved into a nursing home for rehabilitation. He moved on to home hospice when his disease continued to sap his strength, his function, and his future.

In his very last days, I almost could not believe what I saw. He read a beautiful letter aloud to his son about his hopes for him, his love, about what his leaving meant to him. Two friends with whom he had been in the church choir came to his Continued on page 34 ...

January/February 2009 San Francisco Medicine 27

Last Wishes

A Conversation with Betty Rollin A Story of Last Wishes Fulfilled

Steve Heilig, MPH

W

hen New York journalist and television correspondent Betty Rollin’s mother was diagnosed with ovarian cancer in the early 1980s, she did not expect to write a best-selling book about the harrowing experience. But Last Wish, first published in 1985, became a landmark work on the then-small shelf of books on death and dying. The book has since been published in eighteen nations and was the subject of an ABC television movie.

Prior to writing Last Wish, Rollin was an Emmy Award-winning correspondent for NBC and PBS, an editor at Look and Vogue magazines, a New York Times columnist, and author of First, You Cry, the personal story of her battle with breast cancer—also the first book of its kind and also made into a film, starring Mary Tyler Moore. Rollin has authored five more books since Last Wish and is a widely sought speaker for medical, women’s, business, and general audiences.

Please tell us how your book Last Wish came to be written.

It came out of personal experience. My mother died of ovarian cancer over twenty years ago, and she went through the agony of chemotherapy—I think that’s usually less severe now—and after a recurrence, she got to a point where she was near the end but not there yet. She was a very rational sort of person and she simply said to me, “I’ve had a wonderful life, but it’s over and I want it to be over.”

I did not want to hear what she was telling me, as it became clear that she truly wanted to die, and that she wanted me to help her. So my husband and I tried to figure out what to do. We went to our doctor

Were you nervous about writing openly about her dying, and what were the initial reactions to your book?

friends, who were absolutely unwilling to even talk with us about it, for the obvious reason that they could be at legal risk for helping us. We talked about various ways she could get out of this life; we thought of all sorts of wild things, like getting a gun. We soon realized it had to be medication and finally found a doctor who would speak to us on the phone—I have continued to protect his identity even today—and he instructed us on what we needed to do.

Meanwhile, I continued to talk with my mother to see if she still wanted to die.

Very sick people often talk about wanting to die but they don’t really mean it, or they are depressed. My mother was not in the least depressed, but she was extremely uncomfortable, if not in real pain. She was just miserable. But once she knew—and this is a key element—that we knew a way out for her, she became herself again: calm, and I won’t say happy, but peaceful. She seemed well; it was startling. What happened is that her terror had subsided. She felt in control. Our own fear was that it would not work, but it did, and she died peacefully and gratefully.

28 San Francisco Medicine January/February 2009

Certainly. But she had asked at one point, “What do other people do?” And that got me thinking about that, and so I decided that this was an issue that needed to be written about. And I was just glad that I was a writer and could do it. I did first consult with a criminal lawyer who advised me that, for various reasons, it would be safe for me to write a book.

Once it was published, I had not only a lot of calls from the press but from many people wanting to tell me their own stories, many of whom wanted to get help on how to help somebody they loved die. Some said, “I could not do it.” I understood how they felt and, of course, my husband and I should not have been doing it either. Even with some help from a physician, it wasn’t enough. This is not for amateurs—a physician should be doing it. But I had learned there was a movement in favor of allowing physician-assisted dying for the terminally ill, and I knew that I wanted to be part of that. I’d had cancer a couple of times myself and knew that I would want to have that choice.

To me, it’s all about peace of mind. It’s not about how many people actually end their own lives, but how many feel reassured that this is within their control.

One of the ironies in this arena is that giving that assurance to dying patients can actually extend their lives, as they don’t feel compelled to take a “pre-emptive strike” and are willing to see how things go. www.sfms.org

Exactly. Peace of mind can actually give you more time.

Have you ever felt guilt or remorse related to having helped your mother die sooner than might otherwise have occurred?

I’ve never had one bad moment about helping my mother die. It was so clearly what she wanted that I would have felt guilty if I hadn’t helped her. Over the years I’ve heard from many people who felt they couldn’t help a loved one die and they still feel terrible about it. But I’ve often said this is not what family members should be doing.

We were fortunate, but a physician—and safeguards—should be in place.

What about the fear of abuses that might occur if aid-in-dying is legalized, such as coercion due to financial or other factors?

I have now been involved in all this for a long time and have heard all the arguments. People are reluctant to die—it’s not really something you can be easily talked into if you don’t want to do it. And the safeguards in place in Oregon have been scrutinized, and now we know what legalization is like—that very few people actually do it, and there has been no evidence of abuse.

Do you agree with those who feel that the focus on this, with Kevorkian and Oregon and so on, has improved endof-life care?

Well, Kevorkian is kind of a creepy guy and he’s really beside the point now, and even though he deserves some credit for bringing the issue to the attention of the public, he did the movement a lot of harm, too. But yes, the whole issue of suffering at end of life has been improved because of this issue. For example, Oregon in particular has made strides in palliative care. I think there is still much room for improvement, but we’ve also come a long way.

So do you believe the laws should be changed, and if so, how? www.sfms.org

The Oregon model is the way to go, I believe, and our group Death with Dignity is extremely involved in trying to get it implemented in Washington state, as well as in other states.* Do you have any thoughts about how doctors and other caregivers can approach dying patients to find out what their last wishes might be?

When people are near the end of life, they often do not want to face it or talk about it—and that’s their right. But some people do want and need to talk about it, but they don’t have anybody to talk with, or know anyone who knows how to listen and help them express their wishes. Seemingly simple questions like, “What is on your mind right now?” or “Are you comfortable with how things are going for you?” or “What would you want right now if you can have anything?” can give rise to truthful reactions from patients who are just waiting for somebody to ask them that sort of question.

Some will say they’d like to die as soon as possible. Others will say something like, “I want to live every second I have left and be as comfortable as I can.”

I want to be clear that we’re not “pushing” aid in dying; we are just saying that this is an option that should be there for those who might want it. The main thing is that there needs to be caring, competent people around the dying person, people who know how to listen.

For more information on Ms. Rollin’s work, see www.bettyrollin.com. *Note: Subsequent to this interview, voters in the state of Washington legalized physician-aided dying by a margin of 59 percent to 41 percent. The SFMS has a neutral position on the issue, in recognition of very divided physician opinion, and has urged the CMA to take a similar stance.

Last Lecture Continued from page 25... in others: our children, our students, our creative works, our ideas.

Professor Pausch has left us his lecture

and a book, not about dying but about how to live a successful life “the right way” so that “your childhood dreams will come to you.”

The book is about seizing every moment (“time is all you have . . . and you may find one day that you have less than you think”), overcoming obstacles, and helping others achieve their dreams. It is a wonderfully engaging read, covering the author’s childhood and his relations with parents, family members, teachers, and important others.

It is filled with fun, joy, gratitude, love, and wisdom. Pausch says it is “about what has worked for me.”

Main headings include “Really achieving your childhood dreams,” “Adventures . . . and lessons learned,” “Enabling the dreams of others,” and “It’s about how you live your life.” There is lots of good advice for all ages.

Subheadings include “Don’t complain, just work harder,” “A bad apology is worse than no apology,” “No job is beneath you,” “Be a communitarian,” “Watch what they do, not what they say” and much more. Useful quotes include “When there is an elephant in the room, introduce it” and “If you dispense your own wisdom, others often dismiss it; if you offer wisdom from a third party it seems less arrogant and more acceptable,” or “You’ve got to get the fundamentals down, because otherwise the fancy stuff is not going to work” and “Your critics are often the ones telling you they still love you and care about you, and want to make you better.” Other useful maxims: “Not all fairy tales end smoothly” and “You don’t have to fix everything,” especially in a marriage.

I can’t do justice to this lovely book in a short article. For physicians working daily with human problems and illnesses, Professor Pausch provides optimism, an example of great courage in the face of death, and an inspiring set of messages and advice on how to be helpful. He reminds all of us of the preciousness of life; the importance of living fully in the moment; the value of optimism; and the cultivation of gratitude, acceptance, and forgiveness.

Steve Walsh, MD, practices psychiatry privately in San Francisco and Mill Valley.

He is past president of both the SFMS and the Northern California Psychiatric Society. He is a clinical professor of psychiatry at UCSF and a member of the SFMS editorial board.

January/February 2009 San Francisco Medicine 29

Last Wishes

Collected Thoughts on Last Wishes EcoEternity: Green Final Resting Places In the terminal stages of cancer, the famous aviator, Charles Lindbergh, arranged to have his body buried in one of his favorite places in the world—a quiet little churchyard overlooking the sea just off the Hana Road on the Hawaiian Island of Maui. It’s not unusual for people to include in their last wishes the disposition of their bodily remains. Some choose cremation, others are interred in mausoleums or cemeteries, and still others wish to be returned to nature.

For the nature lovers, Axel Baudach founded EcoEternity, a company that oversees more than twenty “green” cemeteries in Germany. His business is now rapidly expanding in the United States. For fees much lower than a traditional burial, one can purchase a place in an EcoEternity Forest, a plot of land kept in its natural state in which one’s cremation ashes can be placed in a biodegradable box and then buried at the roots of a tree, where they will gradually be absorbed as nutrients.

For $500, plus a $250 interment and ceremony fee, one’s ashes can be buried underneath a “Community Tree,” joining the ashes of fourteen strangers. For $4,500, one can have a “Family Reunion Tree,” which can accommodate fifteen biodegradable urns; or a “Friendship Tree,” where one can rest in peace with fellow bridge players, golfing buddies, sorority sisters, or similar groups. The lease for the land is ninety-nine years.

Five years ago there was only one “green” cemetery in the United States. Now there are twenty, with more developing every few months. Some traditional cemeteries

A Bowler Gets His Last Wish On October 16, 2008, Don Doane, a sixty-two-year-old man from Ravenna, Michigan, got his final wish. For many years Doane, an avid golfer and bowler, had told his friends that he had two great wishes in life. One was to get a hole in one in golf, and the other was to bowl a perfect 300 game.

In 1999, on the eighth hole at Rouge River Golf Course in Sparta, Michigan, Doane got his hole in one. Although he bowled regularly, the 300 game remained elusive. Finally, on that October day in 2008, Doane bowled a perfect 300 game.

In the happy congratulatory excitement immediately afterward, he keeled over and died of a heart attack.

As reported by John Branch in the New York Times, on the regular league bowling night in December 2008, the Ravenna Bowl, where Don Doane had completed his 300 game, was crowded with people. A short ceremony to honor Doane was held just before the bowling tournament began.

His widow and son were given his honorary “300” rings.

One man said, “I often wonder if the 300 game caused it, or if it would have happened anyway.” Doane’s pastor at church said, “From a faith point of view, we all hope we can accomplish what God has put before us. He went out with a bang. What a blessing.” Doane’s father told the well-wishers that after bowling a perfect game, “Don was on cloud nine. And he liked it so much that he didn’t want to come down.”

30 San Francisco Medicine January/February 2009

Last E-mails: An Internet Solution to Last Wishes A British company named Alphatalk, Ltd., based in Birmingham, United Kingdom, offers a way that people can avoid the regret of not expressing during their lifetimes their love for family and friends. It allows survivors to create a lasting memorial in cyberspace by creating online obituaries for the deceased.

These internet sites are offered in two ways: through the Online Memorial and Online Obituary services.

According to the company’s website, through Online Memorial you can leave heartfelt messages for friends and loves ones that will be delivered after you have died. In this way, you never have to experience such dying laments as, “If only I had told them” or “If only they had known.” Last wishes and final thoughts can be expressed in letters or specially recorded videos. These then become a legacy that survivors can treasure forever.

The website states, “Even when you are gone, your Internet legacy can be accessed by friends and family across the world.”

The Online Obituary provides a way for survivors of the deceased to express simple text messages, full-length narratives, photographs, and even home-video footage, which are then available on the Internet for all to see. You can also add an online Book of Condolence in which mourners from all over the world can leave their tributes to the deceased.

The myLastEmail.com website states, “Why pay a lot of money for an obituary in your local newspaper, which can only be seen for a short time in a small area of the country?

With the power of the Internet, an online obituary can be seen by friends and relatives around the world. You can commemorate their passing by including cherished video footage of them in happier times—a service no newspaper can offer.”

See www.mylastemail.com for more. www.sfms.org

THANATOPSIS William Cullen Bryant (1794-1878)

Shall send his roots abroad, and pierce thy mould.

To him who in the love of Nature holds Communion with her visible forms, she speaks A various language; for his gayer hours She has a voice of gladness, and a smile And eloquence of beauty, and she glides Into his darker musings, with a mild And healing sympathy, that steals away Their sharpness, ere he is aware. When thoughts Of the last bitter hour come like a blight Over thy spirit, and sad images Of the stern agony, and shroud, and pall, And breathless darkness, and the narrow house, Make thee to shudder and grow sick at heart;— Go forth, under the open sky, and list To Nature’s teachings, while from all around— Earth and her waters, and the depths of air— Comes a still voice—Yet a few days, and thee The all-beholding sun shall see no more In all his course; nor yet in the cold ground, Where thy pale form was laid with many tears, Nor in the embrace of ocean, shall exist Thy image. Earth, that nourish’d thee, shall claim Thy growth, to be resolved to earth again, And, lost each human trace, surrendering up Thine individual being, shalt thou go To mix for ever with the elements, To be a brother to the insensible rock, And to the sluggish clod, which the rude swain Turns with his share, and treads upon. The oak

Yet not to thine eternal resting-place Shalt thou retire alone, nor couldst thou wish Couch more magnificent. Thou shalt lie down With patriarchs of the infant world—with kings, The powerful of the earth—the wise, the good, Fair forms, and hoary seers of ages past, All in one mighty sepulchre. The hills Rock-ribb’d and ancient as the sun,—the vales Stretching in pensive quietness between; The venerable woods; rivers that move In majesty, and the complaining brooks That make the meadows green; and, pour’d round all, Old Ocean’s grey and melancholy waste,— Are but the solemn decorations all Of the great tomb of man. The golden sun, The planets, all the infinite host of heaven, Are shining on the sad abodes of death, Through the still lapse of ages. All that tread The globe are but a handful to the tribes That slumber in its bosom.—Take the wings Of morning, pierce the Barcan wilderness, Or lose thyself in the continuous woods Where rolls the Oregon and hears no sound Save his own dashings—yet the dead are there: And millions in those solitudes, since first The flight of years began, have laid them down In their last sleep—the dead reign there alone.

So shalt thou rest: and what if thou withdraw

In silence from the living, and no friend Take note of thy departure? All that breathe Will share thy destiny. The gay will laugh When thou art gone, the solemn brood of care Plod on, and each one as before will chase His favourite phantom; yet all these shall leave Their mirth and their employments, and shall come And make their bed with thee. As the long train Of ages glides away, the sons of men, The youth in life’s green spring, and he who goes In the full strength of years, matron and maid, The speechless babe, and the gray-headed man— Shall one by one be gathered to thy side By those who in their turn shall follow them.

So live, that when thy summons comes to join The innumerable caravan which moves To that mysterious realm where each shall take His chamber in the silent halls of death, Thou go not, like the quarry-slave at night, Scourged by his dungeon; but, sustain’d and soothed By an unfaltering trust, approach thy grave, Like one who wraps the drapery of his couch About him, and lies down to pleasant dreams.

“Thanatopsis” is reprinted from Yale Book of American Verse. Ed. Thomas R. Lounsbury. New Haven: Yale University Press, 1912.

Speaking from the Grave: Excerpts from a Mark Twain Essay In its December 22, 2008, issue, The New Yorker magazine included an essay written by Mark Twain in 1905. Thus, after more than 103 years, Twain’s commentary on free speech, entitled “The Privilege of the Grave,” was finally retrieved from the Mark Twain Archives at the University of California, Berkeley, and published for the public to read. In this essay, Twain reminds us that in life there are many opinions and ideas that are unspeakable unless we want to suffer the consequences: There is not one individual—including the reader and myself—who is not the possessor of dear and cherished unpopular convictions which common wisdom forbids him to utter. Sometimes we suppress an opinion for reasons that are a credit to us, not a discredit, but oftenest www.sfms.org

we suppress an unpopular opinion because we cannot afford the bitter cost of putting it forth.

None of us likes to be hated, none of us likes to be shunned.

Twain goes on to speak of the possibility of expressing these “unpopular opinions” not in life but from the grave. He points out how much safer is this posthumous mode of expression: Free speech is the privilege of the dead, the monopoly of the dead. They can speak their honest minds without offending. We have charity for what the dead say. We may disapprove of what they say, but we do not insult them, we do not revile them, as knowing they cannot now defend themselves.

Twain notices the consequences of this kind of inhibition of free speech that fails to

reveal unabashedly honest convictions. He says that this means that people are not what they claim to be. With a keen awareness of this irony, he says that the living and, indeed, whole nations “are not really what they seem to be—and never can be.”

The solution to this dilemma? According to Mark Twain, it is to make sure that our true convictions and opinions are like a kind of last wish to be revealed after death: Now there is hardly one of us but would dearly like to reveal these secrets of ours; we know we cannot do it in life, then why not do it from the grave, and have the satisfaction of it? Why not put these things into our diaries, instead of so discreetly leaving them out? Why not put them in, and leave the diaries behind, for our friends to read? For free speech is a desirable thing.

January/February 2009 San Francisco Medicine 31

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Hospital News Chinese

Joseph Woo, MD

Our own Dr. Edward Chow received the 2008 Saint Louis University School of Medicine Alumni Merit Award on October 24, 2008.

This award is given annually to an alumnus who exemplifies in his or her daily life the mission of Saint Louis University. The dean of the School of Medicine, Philip O. Alderson, MD, said, “The Alumni Merit Award recognizes graduates who exemplify the University’s Jesuit ideals of leadership and service to others. Thus Dr. Chow is honored with this award for being an advocate for the health and well-being for the underserved communities in the San Francisco Bay Area.”

As we know, Dr. Chow is executive director of CCHCA and medical director of CCHP as well as being a San Francisco Health Commissioner and practicing internist.

We are also very proud of Dr. Dexter Louie, who has been elected chair of the CMA Foundation. He is succeeding Dr. Frank Staggers and follows in the footsteps of the remarkable Dr. Rolland Lowe, both of whom pioneered the Network of Ethnic Physician Organizations (NEPO).

Dr. Louie is also vice chair of the Asian Pacific Islander American Health Forum, is an elected member of the Moraga School District Board, and is associate medical director of CCHP in addition to being a renowned otolaryngologist.

The San Francisco Health Plan has recognized many of our colleagues for providing outstanding delivery of health care, including awards to Dr. Su-Mui Kuo for the health care of infants; Drs. Dong Lin, Raymond Li, and Kelly Wong for pediatric preventative health; and Chinese Hospital’s Sunset Health Services for Women’s Health Care.

Our twenty-four-hour Treatment Center (of which I am a member) has not received such grand accolades of late, but it remains under the capable direction of Dr. Michael Shafer. We also are happy to welcome two new physicians, Drs. Christopher Freye and Michele Borgeson.

www.sfms.org

Saint Francis

Kaiser

Wade Aubry, MD

Robert Mithun, MD

There are few more challenging or painful medical situations than when a patient or family is faced with the reality of the dying process prior to an imminent death. It is our role as physicians to help them navigate the often complicated and fraught situations that involve decisions about when to continue medical life support and when to let go.

The process of dying and death are natural events that occur as part of the life cycle yet are generally looked at in the medical profession as a failure of treatment. A patient should be saved at all costs for as long as possible—that is the philosophy of many providers and the medical establishment. We learned in medical school that cure is success and death is failure. This concept has followed us in our training and later in our medical practice.

Clinical evidence brought forth since the support studies pointed to many areas that can be improved in communication and symptomscontrol prior to death. Palliative care in the hospital and when a person chooses to die at home are becoming more acceptable, often resulting in a less physically and emotionally painful passing.

By listening to patients and their families when death is approaching, we as medical providers help ensure they have as smooth a transition as possible. Their priorities need to be taken into account, and often that involves difficult decisions on both the medical and patient sides of the equation. However, in order to allow the development stages of dying to occur, it is essential that we begin a more open conversation if we are to advance our profession not only as scientists but also as healers.

Palliative Services at Saint Francis Memorial Hospital aims to relieve the suffering of and improve quality of life for patients with chronic or terminal illness. The interdisciplinary team, which consists of physicians, certified palliative care nurses, chaplains, social workers, and other clinicians, develops a trusting relationship with patients and their families and provides thorough information throughout the course of treatment and the dying process. Moreover, the team’s advanced care planning efficiently assists patients and the families in deciding what interventions and medical care they desire, including completion of Advance Directives.

Patricia Galamba, MD, the Palliative Services medical director at Saint Francis, remarks that it has been a busy year for Palliative Services, with the caseload up 380 percent. This leap in service has resulted in increased awareness of comfort care and has allowed patients to consider their options toward aggressive care. Palliative Services has an exciting year ahead. Of special interest is the fact that a generous donor has donated support funds that will be applied to the establishment of several new Comfort Care suites. In addition, they will be collaborating with community-based hospices to provide seamless general inpatient hospice care. As Palliative Services hopes to have this pilot project up and running within ninety days, these efforts will bring the clinical team together with other hospice teams to provide inpatient and end-of-life care to patients and their families.

In other news, we are pleased to recognize our medical director of Radiation Oncology, John Meyer, MD, for becoming a Fellow of the American Society for Therapeutic Radiology and Oncology (ASTRO). Members of ASTRO are eligible to become a Fellow if they have been a member of the Society for at least twenty years, have served in a leadership role for the organization, and have made a significant contribution to the field of radiology.

As we begin 2009, let me extend our best wishes to the entire San Francisco medical community for a year of prosperity and good health.

January/February 2009 San Francisco Medicine 33

Hospital News St. Luke’s

Jerome Franz, MD

After three years and two months, I am turning over the responsibilities of the medical staff to Ed Kersh, elected without opposition in December.

He is coming in with new ideas and energy for the new hospital and will cut back on his busy cardiology practice to give more time to this office. He has been an active staff member at CPMC for thirty years and will use this long connection to promote greater integration between the two separate medical staffs of St. Luke’s and CPMC. It has been a tumultuous three years, marked by the planned closing of St. Luke’s; turned around by the combined effort of community leaders, doctors, employees, and the unions; and culminating in the work of the Blue Ribbon Panel and its recommendation to build a new, smaller hospital next to the 1970 tower. CPMC has engaged the physicians in the planning process required to give OSHPD a detailed outline of the project by December 19. It has been exciting to see new ideas go into hospital planning that promote efficiency and ease of use for both patients and doctors. Planned services are for a full emergency department with expanded urgent care capacity and pediatric hospitalist coverage, obstetrics, an intensive care unit, outpatient and inpatient surgery, imaging, and fifty to sixty med-surg beds. When the new hospital is complete in 2014, the old tower will be taken down, thus eliminating the skilled nursing and subacute units. Planning must begin soon to deal with the city-wide shortage of SNF beds that already exists.

Along with the new hospital, CPMC is planning two new community clinics to address the gap in primary care. Likely locations are in the Excelsior and Potrero districts. Many details need to be worked out in the next year.

So I am “retiring” to my full-time practice of internal medicine and geriatrics. I have enjoyed writing this column for the San Francisco Medical Society, which does an admirable job of connecting doctors with each other and with the city government. I plan to continue as an active member.

UCSF

Elena Gates, MD

UCSF Medical Center treats 500 patients a year under its palliative care program, according to Steven Pantilat, MD, director of UCSF’s program. The program starts with pain control, so patients can focus on what is important to them at the end of life. Pantilat says that palliative care is good for patients, their families, and for doctors themselves. “Palliative care gets at what being a healer is all about,” he says. “We can heal even when we can no longer cure.”

Pantilat explains that the provider’s very presence and humanity can be healing. “It recognizes the humanism in medicine. Ultimately this kind of care shows why so many of us go into the field of medicine in the first place: to bring our humanity to the bedside. Our presence is equally as important as all the modern technologies we offer, especially at the end of life.”

UCSF Children’s Hospital Compass Care program supports children facing life-threatening illnesses, as well as their families. Compass Care strives to keep children comfortable, happy, and engaged in normal childhood activities, and it supports parents so they can make good decisions. Says Sally Sehring, MD, clinical professor of pediatrics, “In the hustle and bustle of the hospital, they are still parents.”

Support continues even when the child dies. “Some children are never known to anyone outside the hospital,” says Sehring. “Creating memories for the family—remembering the child’s personality or spirit—lets the family know that their child will be remembered.” Compass Care sends bereavement cards to families on the child’s birthday and anniversary of death.

“Parents never forget,” says Sehring. “This shows them that their child is not forgotten. Death should not mean you are abandoned by the people who take care of you.”

For more information, please see http:// www.ucsfhealth.org/childrens/special/c/71361. html, or contact Robin Kramer at (415) 3534248.

34 San Francisco Medicine January/February 2009

Growth and Peace at End of Life Continued from Page 27 ...

bedside to sing for him. His mother and his sister stood at his bedside together and the entire family sang. This had not been a family that sang. This had not been a family that did much together willingly, but now all were assembled around him in love. In the end, he died at peace, having brought some closure to his relationship with his son and some reconciliation to his relationships with his mother, father, and sister.

It was a remarkable pattern. With each constriction of the possibilities for him to live into the future, he was enlarged in how he lived in the present. Growth can take time. Although such growth can happen in the hospital, for many, the time to grow in these deep ways is more likely to be available in the outpatient world, over weeks and months rather than the hours and days we cede to dying in the hospital.

We often try to live in times not our own. The past is gone. No one knows for sure what future they have. All we have is the present. For some, the last wish at the end of life brings a supreme focus on living fully, growing emotionally, and a discovery of things never thought possible.

Michael W. Rabow, MD, is the director of Symptom Management Service at the UCSF Helen Diller Family Comprehensive Cancer Center.

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2008 HealthGrades® Distinguished Hospital Award for Clinical Excellence™, presented to California Pacific Medical Center, among the top 5% in the nation in terms of mortality and complication rates for 27 procedures and diagnoses.

HealthGrades® also ranked California Pacific: s Best in the San Francisco Area for Cardiology and Overall Cardiac Services s 5-star rated for CHF, AMI and Atrial Fibrillation uished H

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American College of Cardiology and the American Heart Association’s Silver Performance Award, presented for California Pacific’s results from the ACTION national registry for acute coronary syndrome patients. The award recognizes that a minimum 85% compliance rate has been sustained for overall adherence to guideline-based therapy in this patient cohort for 12 consecutive months.

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