Rx for Optimal Healing

Special Feature: 2009 AAPM&R Annual Assembly Plenary Presentation

Prescriptions for Optimal Healing Julie K. Silver, MD As a physiatrist, I spend a lot of time explaining to people what I do. I hear from colleagues that they are in the same predicament. My sister, a pediatrician, doesn’t have this problem.

People instantly understand the job description of a pediatrician without any explanation.

For better or worse, I generally begin by saying that I help people to heal physically from injuries and illnesses. I often expand this by remarking that physical and emotional healing typically go together—the better individuals feel physically, the better they feel emotionally, too.

Physiatrists and other rehabilitation professionals have a mantra, “focus on function.”

This important concept informs every aspect of our work. If someone is functioning without any problems, we’re not needed. Unfortunately, that’s not the case for many individuals.

Which is why, although we’re a small specialty that is often poorly understood, we’re extremely popular with overflowing schedules and grateful patients who spread the word about the doctors who are able to provide people with prescriptions for optimal healing.

I recall hearing in residency someone say that good health is a temporary condition.

Writer Susan Sontag translated this idea beautifully when she wrote, Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place [1].

I appreciate great translations because they help both doctors and patients enormously.

In fact, the role of the physician is as a translator— conveying vitally important health information to those who desperately need it. To the uninformed and uninitiated, this may be construed as “dumbing things down.” However, the very idea of this is disrespectful, and the vast majority of physicians strive, above all things, to be respectful to their patients.

Therefore, we must learn to become superb translators of medical information.

In my role as the Chief Editor of Books at Harvard Health Publications, the consumer health branch of Harvard Medical School, I consider myself a professional translator. As an editor, I work with my Harvard colleagues to help them translate their research and special knowledge into consumer health books that carry the Harvard Medical School imprimatur.

Our millions of readers come from nearly every country in the world. They are farmers, teachers, construction workers, engineers, and yes, even doctors. Regardless of their formal education, we approach them as intelligent people who want to know more about how they can improve their health. In short, we aim for an awesome translation of complicated health research and information.

My skills as a professional translator improve every year. It is a skill, like any other, that one is not born with but rather develops over time. At some point I may reread this editorial and most likely I’ll wish that I had written things differently. In the future, I will read this having greater skill as a professional translator and with a more critical eye than I have now.

And although I may wish that I had known enough now to do an even better translation, I hope that I will also recognize how much I’ve learned in the interim.

There are many things that go into a great translation. One of these comes from the writer’s mantra, “show; don’t tell.” Telling at best tends to render a boring translation and at worst makes the author sound too authoritarian and overbearing.

An example of “telling” is something like, “Doctors make a lot of mistakes, especially when they are in training.” My colleague, Harvard neurosurgeon Atul Gawande, wrote PM&R

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1934-1482/10/$36.00 Printed in U.S.A.

J.K.S. Harvard Medical School. Address correspondence to J.K.S.; e-mail: Julie_Silver@ hms.harvard.edu Disclosure: 3A; 4A; 5A; 9, founder of Oncology Rehab Partners Disclosure Key can be found on the Table of Contents and at www.pmrjournal.org Presented at the AAPM&R Annual Assembly in Austin, TX, October 22, 2009.

Submitted for publication December 29, 2009; accepted December 31, 2009.

© 2010 by the American Academy of Physical Medicine and Rehabilitation Vol. 2, 94-100, February 2010 DOI: 10.1016/j.pmrj.2009.12.014

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Figure 1. Developing and utilizing a powerful translation.

about this idea in his bestselling book, Complications. Instead of just telling readers that doctors make a lot of mistakes, he showed them by writing about his attempts to place a central line: . . . After an X ray showed that I had not injured her lung, he had me try again on the other side with a whole new kit. I still missed . . . . Maybe she was an unusually tough case . . . . When I failed with a third patient a few days later, however, the doubts really set in. Again, it was stick, stick, stick, and nothing. I stepped aside. The resident watching me got it on the very next try [2].

One of the key differences between telling and showing is that with showing readers are left to draw their own conclusions, whereas in telling the author tells the reader what to think. Intelligent readers like to draw their own conclusions.

They want to be shown, rather than told, information.

The writer’s mantra is one that medical professionals may want to adopt because it makes for a much more powerful translation, whether it is a book, textbook chapter, speech, or research grant. Physiatrists who are able to both focus on function and show, don’t tell will find that they have powerful tools to advance their careers and to help people in a very meaningful way (Figure 1).

One of the more-challenging translations I’ve taken on is in my book, Super Healing [3]. In this book, I had to describe the optimal ways to heal from any injury or illness. Physical deconditioning, inadequate nutrition, and lousy sleep patterns are what I called the “triple threat” to optimal healing.

The triple threat begins at the onset of any serious medical condition and usually the 3 factors occur nearly simultaneously and work synergistically to create an environment for at best mediocre healing and at worst truly unsuccessful physical recovery that leads to unnecessary permanent loss of function and disability. Of course, how one feels physically affects emotional health, so it’s no surprise that when the triple threat is in action people often feel depressed, stressed, disconnected, and vulnerable to setbacks.

If a poor diet, lack of sleep, and lack of exercise work together to keep people from healing optimally, then it makes sense that really focusing on these issues can help them to recover more quickly and better. Focusing on improving diet, sleep, and physical activity that I called the “super healing synergy” is simply reversing the 3 components of the threat. Of course, there are many other important diagnosisspecific factors in healing and some further general considerations, such as relieving pain and avoiding prolonged anxiety or depression. The point of this book was to empower readers with some things that they could do at home to help themselves heal. The translation was important, because readers generally don’t want to hear that they need to eat better, exercise more, and pay attention to their sleep. That advice, although important when it comes to healing, is often not well received. Therefore, in Super Healing, I really had to show readers how these factors facilitate optimal healing (together with their doctors’ advice, of course).

Sleep may be the most underappreciated component of the super healing synergy. So, I showed readers the importance of sleep in this way:

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Proper rest has long been considered an essential component of good health, but recently this issue has become so important that if you don’t get enough sleep you can literally be criminally prosecuted and go to prison. You think I’m exaggerating? Let me tell you a story about a woman I used to work with. (I’ll call her Joyce). One day we were at a medical conference that began early in the morning and lasted until the late afternoon. I drove home alone and passed a terrible accident that occurred on the opposite side of the interstate and backed up traffic on that side for miles. I didn’t think much of the accident until later when I heard that Joyce, following the same route that I was taking to go home, had somehow crossed over the center barrier on the interstate and had hit a van carrying a father and two children head-on. Apparently everyone was injured. Joyce sustained some bone fractures and skin lacerations. I don’t know what happened to the others. Joyce, who was found to be sober at the time of the accident, was prosecuted for reckless driving and part of the prosecution’s case centered on the belief that she was overly fatigued.

Fatigue can be a criminal offense under the right circumstances— usually when a vehicular or industrial accident occurs that is believed to be caused by someone whose mind and body are not functioning optimally because he or she is tired. Major industrial catastrophes such as Chernobyl and Three Mile Island, as well as serious accidents including Exxon Valdez and the Space Shuttle Challenger, have been attributed in part to sleepiness in the workplace. When it comes to “drowsy drivers,” the article, Fatigue and the Criminal Law [4], notes that most countries and states don’t have laws regulating fatigue, but tired drivers who get into accidents can be prosecuted under various other statutes such as “dangerous driving.”

The state of New Jersey, recognizing that excessive sleepiness is the second leading cause of car accidents and a major cause of truck accidents in the United States, is more specific and makes it an offense for a person to drive if they have not slept in the previous 24 hours (the law can be invoked if there is a death caused by the crash or the accident involves a motor vehicle).

Studies have shown that sleepy drivers are just as dangerous as drunk drivers. According to an article titled Sleep Deprivation that appeared in the medical journal Primary Care: Clinics in Office Practice, “Subjects who drove after being awake for 17 to 19 hours performed worse than those who had a blood alcohol level of .05 percent. Twenty to 25 hours of wakefulness produces performances decrements equivalent to those observed at a blood alcohol concentration of 0.10%, a level deemed unsafe and unacceptable when working or driving” [5].

PRESCRIPTIONS FOR OPTIMAL HEALING

“Sleep is so incredibly important for physical and mental restoration that without proper rest, we don’t function well . . . Consider the two things that happen without fail when you have an acute infection: you get a fever, and you sleep more. These are the body’s natural defenses against infection. But sleeping well does much more than just help fight infection; it helps you to heal physically as a variety of concerted chemical reactions take place when you are least aware of them happening” [3].

ENTERING THE KINGDOM OF THE SICK In 2003, I was 38 years old and had the opportunity to reflect on Susan Sontag’s words in a way that I wasn’t anticipating—I became a citizen in the kingdom of the sick. Every cancer diagnosis is the beginning of a personal and family crisis, and mine followed the usual pattern: shock, dismay, fear, and, of course, profound grief. To be catapulted from my role as a physician to the role of a patient was indescribably unpleasant.

The great irony with cancer is that people often feel much better before their treatment begins than when it is over.

Oncologists have to contend with the dual and opposing mandates to save lives and adhere to the Hippocratic Oath, “First, do no harm.” If I had had pneumonia instead of cancer, I would have gone to the doctor with a raging fever, difficulty breathing, and profound fatigue. My physician would have prescribed antibiotics that would improve my general state of health. Although I am truly grateful to my oncology team, there is no doubt that when I finished my last chemotherapy session, I was a different woman than I had been a few months earlier.

Wilfred Sheed wrote of his cancer experience in his memoir, In Love With Daylight: A Memoir of Recovery. Sheed noted, As the radiologist [radiation oncologist] reads off the list of possible side- and after-effects, to run concurrently and forever, it’s awfully hard to remember that this guy is supposed to be on your side. There he is, about to kill off thousands of your favorite cells, adding up to a large tract of the body that brought you this far, and they call this man a healer! Talk about bombing villages in order to liberate them; talk about napalming whole forests on suspicion. For all anyone knew, I might not even have cancer at this stage. But bomb we must. One can’t be too careful [6].

In her memoir, A Season in Hell, Marilyn French who was diagnosed with esophageal cancer wrote this about physicians, “Simply to treat cancer means they must violate the primary tenet of their code: First, do no harm” [7].

Frail, bald, fatigued, and in considerable pain, I asked my oncologist what to do next. He replied, “Go back to work.” At first I was surprised. What about my rehabilitation? Then, I

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Table 1. Institute of Medicine: 10 Key Recommendations for Cancer Survivorship [10] Recommendation 1

Recommendation 2

Recommendation 3

Recommendation 4

Recommendation 5

Recommendation 6

Recommendation 7

Recommendation 8

Recommendation 9

Recommendation 10

Establish cancer survivorship as a distinct phase of cancer care. *This should include increasing the awareness of the need for oncology rehabilitation and a concerted effort to ensure the delivery of appropriate rehabilitation interventions to survivors.

Provide a comprehensive care summary and follow-up plan (survivorship care plan) to survivors. *The survivorship care plan should have recommendations regarding rehabilitation assessments and interventions.

Use evidence-based clinical practice guidelines, assessment tools, and screening instruments to identify and manage late effects of cancer and its treatment. *These measures should include those that identify and help guide the rehabilitation treatment of cancer survivors.

Develop quality-of-care measures that pertain specifically to cancer survivors and implement quality assurance programs to monitor/improve the care that all survivors receive. *The quality-of-care measures that are developed and implemented should include oncology rehabilitation.

Test models of interdisciplinary survivorship care in diverse patient populations and across systems of care. *This testing should include oncology rehabilitation.

Develop comprehensive cancer control plans that include survivorship care and promote the implementation, evaluation, and refinement of existing state cancer control plans. *These comprehensive cancer control plans should also include oncology rehabilitation.

Expand and coordinate efforts to educate health-care providers so that they may be equipped to address the health-care and quality-of-life issues that cancer survivors face. *Rehabilitation health-care professionals should receive ongoing education in oncology rehabilitation for them to optimally treat cancer survivors. Oncology health-care professionals should be educated about the benefits of rehabilitation medicine and the best ways to interface with rehabilitation professionals.

Act to eliminate discrimination and minimize adverse effects of cancer on employment while supporting cancer survivors with short-term and long-term disabilities that affect work. *Rehabilitation may enable more survivors to return to work and to function at the highest level possible.

Act to ensure that all cancer survivors have access to adequate and affordable health insurance with help from insurers and healthcare payors. *Rehabilitation interventions are part of conventional medicine and thus generally covered by health insurance and health-care payors.

Increase funding support of survivorship research to better guide effective survivorship care. *Oncology rehabilitation research should be emphasized in both oncology and rehabilitation medicine.

*Note that the italicized portions are the author’s comments and recommendations about oncology rehabilitation as they pertain to the IOM report.

realized that this is the standard of care currently: find a suspicious lesion in an otherwise-healthy person, work it up, if positive for malignancy then treat the patient, at the end of acute cancer treatment recommend minimal follow-up, primarily intervening for cancer recurrence issues. No rehabilitation.

I had no option but to rehabilitate myself. When I was strong enough, I wrote a book for cancer survivors titled After Cancer Treatment: Heal Faster, Better, Stronger. This book translated what I’d learned about rehabilitating myself into a self-help guide for other survivors who were struggling with the after-effects of cancer treatment [8].

At the same time that I was writing this book, the Institute of Medicine (IOM) was investigating the issue of survivorship care and released a pivotal report titled From Cancer Patient to Cancer Survivor: Lost in Transition. This report documented

the many unmet needs of those who finish acute oncology treatment and then are left to struggle with a host of issues, including the toxic side-effects of treatment that often leave survivors unnecessarily disabled or, at the very least, able to function but not at an optimal level [9]. Indeed, pain, profound fatigue, and deconditioning; loss of range of motion of joints as the result of surgery, chemotherapy, and radiation treatments; and many other lingering side-effects of treatment can all be mitigated with interdisciplinary rehabilitation services, although few survivors get them.

The IOM report listed 10 key recommendations, including creating cancer survivorship as a distinct phase of cancer care (Table 1) [10]. One can assume that oncology rehabilitation would play a major role in this new phase of cancer care, although the report did not explicitly state this.

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PRESCRIPTIONS FOR OPTIMAL HEALING

Figure 2. Components of a cancer survivor’s care plan. Copyright Oncology Rehab Partners—permission has been granted for reuse.

It is not unusual to see oncology rehabilitation either not represented or underrepresented when it comes to survivorship care. Oncology rehabilitation recommendations typically are not included because they are poorly understood.

This is in part why oncology rehabilitation, although a critical part of survivorship as a distinct phase of cancer care, is usually underdeveloped— even in comprehensive cancer centers.

2. Every survivor care plan should address oncology rehabilitation so that patients know where they can find resources that will help them function at the highest possible level.

ONCOLOGY REHABILITATION IN SURVIVORSHIP CARE

In 1929, an article in the journal Medicine offered this advice about how to help patients who had recently experienced a heart attack:

Perhaps the IOM report itself provides a clue as to why the millions of cancer survivors worldwide have not received oncology rehabilitation services. This seminal report largely downplayed rehabilitation medicine and generally ignored the importance of oncology rehabilitation.

The IOM report is not unusual in its omission of oncology rehabilitation as a major component of developing cancer survivorship as a distinct phase of cancer care. In fact, currently there are very few cancer centers or hospitals that offer oncology rehabilitation services, and those that do are generally fragmented and not well-executed with interdisciplinary teams. Indeed, even institutions that have a major commitment to creating survivorship services often leave out oncology rehabilitation when they put together their survivorship programs (Figure 2).

Although it may seem obvious to rehabilitation professionals, the following are actually revolutionary ideas at this point in time: 1. Every institution that provides comprehensive cancer services should offer oncology rehabilitation.

A LESSON FROM CARDIAC REHABILITATION

The nurse should be carefully instructed to do everything in her power to aid the patient in any physical activity so that all possible movements such as feeding himself or lifting himself in bed are spared . . . Finally, the patient should be urged to spend at least six weeks, and preferably eight weeks or more, absolutely in bed [10].

By the late 1930s, many people were out of work because of heart disease. The New York State Employment Service began to investigate this, and a resulting survey revealed that 80% of people on disability were cardiac patients unable to return to work [11]. This discovery led to the establishment of cardiac “work evaluation units” in teaching hospitals, rehabilitation centers, and community hospitals. These units physically and psychologically evaluated patients for work.

These units were typically led by cardiologists who directed a team of caregivers. These units aimed to: (1) provide clinical services by the use of a team approach; (2) provide a place to educate physicians in training; and, (3) promote cardiac research. The evaluation and treatment recommendations

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never included formal exercise because physical activity was still considered harmful to heart patients.

Pioneering research beginning in the 1950s demonstrated that this was precisely the wrong way to treat someone who had experienced a heart attack. By the 1960s it was known that early mobilization of heart patients under a clinically implemented and supervised protocol is optimal.

This finding led to the development of cardiac rehabilitation programs, which generally presents the standard for care in developed countries. Today, a comprehensive cardiac rehabilitation program usually consists of three phases: Phase 1—inpatient hospital phase Phase 2—outpatient hospital-based phase (2 to 4 months) Phase 3—maintenance phase (up to 1 year)

WHO WILL “OWN” ONCOLOGY REHABILITATION? Oncology rehabilitation is currently where cardiac rehabilitation was during the first half of the 20th century. In fact, the vast majority of cancer survivors would benefit from oncology rehabilitation in an interdisciplinary team setting, but the overwhelming majority are sent home to heal on their own.

Frequently, cancer survivors are encouraged to “accept a new normal” without being given the tools to optimally heal and function. In fact, the term “new normal,” which is used extensively among oncology professionals to help patients adjust to life after cancer diagnosis, risks being a euphuism for suboptimal healing that occurs as a result of a lack of oncology rehabilitation services.

This model is not a viable one and will certainly change in the future. However, who will support and lead this change is not clear. Certainly both oncologists and physiatrists should have a vested interest. Ideally, we’ll all work together to advance survivorship care. Practically, there will likely be clear leadership coming from either those in oncology or in rehabilitation medicine.

At this point, oncologists have a new mandate from the IOM report From Cancer Patient to Cancer Survivor: Lost in Transition [9] to create survivorship as a distinct phase of cancer care. One of my current career objectives is to show them why including oncology rehabilitation is essential. Another career objective is to encourage my physiatry colleagues to pick up the gauntlet and help lead the way to insure that oncology rehabilitation becomes the standard of care for survivors.

In rehabilitation medicine, we don’t have the same mandate that the oncology community does when it comes to creating survivorship as a distinct phase of cancer care.

Instead, we have an opportunity. In a new book that I developed at Harvard Health Publications titled The Winner’s Brain, the authors describe a concept called “opportunity radar.” One of the authors, Jeff Brown, PsyD, explains opportunity radar in this manner,

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Winners are continually scanning for blips on life’s radar screen and when a blip looks interesting, they investigate. They recognize that opportunities don’t always come gift-wrapped; more often than not, they come wrapped in a problem or an idea that everyone else has simply missed [12].

It is my hope that physiatrists and other rehabilitation professionals will use their “opportunity radar” to recognize that we have a clear opportunity to make a profound impact on the way in which cancer patients receive care. We can and should be instrumental in advancing survivorship care now and in the future.

This is already beginning to happen in physical medicine and rehabilitation. A recently published textbook titled Cancer Rehabilitation: Principles and Practice is a good example [13]. This is an excellent resource for those interested in oncology rehabilitation and includes chapters by nearly 150 contributors. Another example is the physiatrists who are writing about the barriers to oncology rehabilitation and how to overcome them [14-21]. A third example is the recent announcement by the American Academy of Physical Medicine and Rehabilitation that it will focus on oncology rehabilitation at the 2011 Annual Assembly [22]. This is not meant to be an inclusive list, and there are certainly many other examples of individuals and organizations that are contributing significantly to the advancement of oncology rehabilitation.

Prescriptions for optimal healing come in many forms; however, in rehabilitation medicine they begin with focusing on function and figuring out what interventions will make a significant difference. Then, an excellent translation helps the multidisciplinary team and the patients to understand what comes next and to do whatever is necessary for optimal healing to take place.

On April 19, 1989, shortly after 9 p.m., a young woman went for a run after work. She was attacked—raped and viciously beaten. Taken to the emergency department in a comatose state with her body temperature 85°, few thought she would live. Trisha Meili, known to most people as the “Central Park Jogger,” did survive and became an avid spokesperson for rehabilitation medicine and optimal healing. In her memoir Trisha wrote, “I built a life until I was twenty-eight, was struck down, and so had to build another.

Two lives, and I’m proud of both” [23].

Every person who is struck down and has to build another, albeit different, life should be offered help from rehabilitation professionals who are the experts in paving the way for optimal recovery. Whether patients have been involved in a car accident, have been attacked, experienced a stroke, or been diagnosed with a serious illness such as multiple sclerosis, they deserve a prescription for optimal healing from the doctors who have devoted their careers to physical medicine and rehabilitation—physiatrists. This includes the 11 million cancer survivors in the United States and the millions more

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worldwide who are mostly still waiting for someone to step forward and offer them a prescription for optimal healing.

Let us not continue to allow cancer survivors to accept a “new normal” before they have healed as well as possible.

Instead, we should work with each other and our oncology colleagues to provide them with prescriptions for optimal healing. Physiatrists will hopefully use their “opportunity radar” to lead the way in developing oncology rehabilitation as the standard of care and as a key component of creating survivorship as a distinct phase of cancer care.

REFERENCES 1. Susan Sontag quotes. Available at: http://thinkexist.com/quotes/susan_ sontag/. Accessed on 12/15/09.

2. Gawande A. Complications: A Surgeon’s Notes on an Imperfect Science. New York, NY: Picador; 2002, 19.

3. Silver JK. Super Healing. New York, NY: Rodale; 2007, 104-105.

4. Jones CB, Dorrian J, Rajaratnam SMW. Fatigue and the criminal law.

Industrial Health 2005;43:63-70.

5. Malik SW, Kaplan J. Sleep deprivation. Prim Care 2005;32:475-490.

6. Sheed W. In Love With Daylight: A Memoir of Recovery. New York, NY: Simon and Schuster, Inc.; 1995, 234.

7. French M. A Season in Hell. New York, NY: Alfred A. Knopf, Inc.; 1998, 60.

8. Silver JK. After Cancer Treatment: Heal Faster, Better, Stronger. Baltimore, MD: The Johns Hopkins University Press; 2006.

9. Hewitt M, et al. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press; 2006.

PRESCRIPTIONS FOR OPTIMAL HEALING

10. Levine SA, Brown CL. Coronary thrombosis. Medicine 1929;8:245.

11. Certo CM. History of cardiac rehabilitation. Phys Ther 1985;65(12): 1793-1795.

12. Brown J, Fenske M, Neporent L. The Winner’s Brain: The Strategies Great Minds Use to Achieve Success. New York, NY: Da Capo Lifelong Books; 2010.

13. Stubblefield MD, O’Dell M. Cancer Rehabilitation: Principles and Practice. New York, NY: Demos Medical Publishing, LLC; 2009.

14. Silver J, Mayer RS. Barriers to pain management in the rehabilitation of the surgical oncology patient. J Surg Oncol 2007;95(5):427-435.

15. Vargo MM. The oncology-rehabilitation interface: Better systems needed. J Clin Oncol 2008;26(16):2610-2611.

16. Cheville AL, Tchou J. Barriers to rehabilitation following surgery for primary breast cancer. J Surg Oncol 2007;95(5):409-418.

17. Stubblefield MD, Bilsky MH. Barriers to rehabilitation of the neurosurgical spine cancer patient. J Surg Oncol 2007;95(5):419-426.

18. Gerber LH. Cancer rehabilitation into the future. Cancer 2001;92(4 Suppl):975-979.

19. Franklin DJ. Cancer rehabilitation: Challenges, approaches, and new directions. Phys Med Rehabil Clin N Am 2007;18(4):899-924.

20. Custodio CM. Barriers to rehabilitation of patients with extremity sarcomas. J Surg Oncol 2007;95(5):393-399.

21. Cheville AL, Beck LA, Petersen TL, Marks RS, Gamble GL. The detection and treatment of cancer-related functional problems in an outpatient setting. Support Care Cancer 2009;17(1):61-67.

22. American Academy of Physical Medicine and Rehabilitation 2011 Annual Assembly. Available at http://www.aapmr.org/. Accessed December 15, 2009.

23. Trisha Meili. I Am the Central Park Jogger. New York, NY: Scribner; 2003; 3