Decide for Yourself Life Support â– Living Will â– Durable Power of Attorney for Health Care
By Carolyn S. Brown, R.N., M.N., CCRN Julia Ann Purcell, R.N., M.N., CCRN, FAAN and Sue Pritchett
This book can help you make choices about end of life decisions. Examples are included to illustrate topics but do not cover all the situations that might occur.
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AUTHORS & REVIEWERS
Carolyn S. Brown, R.N., M.N., CCRN, is a former nursing instructor working as a staff nurse in the Coronary Care Unit at Emory University Hospital, Atlanta, Georgia. She has a great deal of experience with concerns of the critically ill, having worked with oncology and intensive care patients for over 13 years. On a daily basis, she helps patients and families cope with the overwhelming issues of serious illness and the application of advance directives. Julia Ann Purcell, R.N., M.N., CCRN, FAAN, is a Clinical Nursing Specialist in Cardiology at Emory University Hospital, Atlanta, Georgia. She has authored many patient publications in the area of heart disease. Sue Pritchett is co-owner of Pritchett & Hull Associates, Inc., with over 25 years of experience in developing better methods of communicating critical health and medical information to patients and their families. Reviewers: Howard S. Lewis, M.D., Seattle, Washington Ruth H. Gershon, J.D., Atlanta, Georgia Stephen W. Overall, M.Div., Atlanta, Georgia
ABOUT THIS BOOK
This book is for every adult. Whether you are 18 or 80 and no matter how healthy you are, at some time you will most likely be faced with end of life decisions. That time will be much easier for you and your family if your wishes about life support are known in advance. This book will help you plan ahead. • You will learn what advanced life support and extraordinary care mean. • You will be able to decide what a “good life” means to you and when you might not want extraordinary care. • You will learn how and when to talk to your family, doctors and others about life support and what you want done in your case. • And this book will help you put your choices in writing. The Living Will and Durable Power of Attorney for Health Care are explained, and samples are included.
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TABLE OF CONTENTS
Introduction ...............................................5 Advanced Life Support..................................7 Related Issues ...........................................12 Decide For Yourself About Advanced Life Support ................................16 Talk About Your Wishes..............................18 Put It In Writing ......................................20 Summary ................................................24 The Author’s Personal Experience...................25 APPENDIX ...........................................31 Questions & Answers...........................32 Sample Living Will .............................35 Sample Durable Power of Attorney for Health Care ...................37
INTRODUCTION
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n earlier times, there were few choices to change the course of life and death. We did not know that “shocks” to the heart could bring people back to life or that machines could one day breathe for us. Today, we have many ways of keeping people alive, but when a person is near death, extra medical care may not be the best choice. At some point in a medical crisis, we may have to decide: “Is being kept alive worth it?” or “When do we want extraordinary medical treatment withheld or stopped?” Most of us would want life support if there was a chance of returning to what we call a “good life.” But if machines or other measures would only delay our death, we might choose not to go through more trauma. Instead, we might prefer just what is needed to keep us comfortable. The choices about life support are yours and are easier to make while you are well. Planning ahead like this would not be important if you could always communicate with your doctor when injured or very ill. The problem is that a critically ill person cannot always tell the medical staff what he or she wants. If this happens and your wishes about life support are not in writing, your doctor may be bound to do everything possible to prevent your death. This would be done regardless of your chance of getting well or the emotional and financial cost to you or your family.
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INTRODUCTION
Instructions about medical treatment when you are ill and not able to speak for yourself are called advance directives. These can be: • written instructions drawn up and signed by you • a Living Will (a legal paper stating your wishes about treatment if there is no hope of cure and you can’t speak for yourself ) • a Durable Power of Attorney for Health Care (a legal paper on which you name someone to make medical decisions for you if you can’t speak for yourself ) In 1991 the U.S. Congress passed the Patient SelfDetermination Act. This Act requires that all hospitals, nursing homes, hospices and clinics which receive federal funds ask patients whether they have a Living Will or Durable Power of Attorney for Health Care. This Act does not require that you fill out these papers. But not having them can cause problems if you are not able to communicate when very ill. To make sure that your choices about life support are carried out, take a copy of your Living Will and Durable Power of Attorney for your medical chart when admitted to a hospital, nursing home, hospice or clinic. If you don’t have these papers when you enter one of these health care centers, someone at any of these places can get them for you. The terms and examples on the next pages can help you make end of life decisions.
DEFINITIONS & EXAMPLES
Advanced Life Support (ALS) Most often ALS refers to emergency actions that can restore a normal heartbeat and breathing. Other times it means using machines and/or drugs to take over or help the function of vital organs such as the lungs, kidneys or heart.
CPR (cardiopulmonary resuscitation): chest massage and mouth-to-mouth breathing done to try to revive a person when the heartbeat and breathing stop
Defibrillation or Cardioversion: an electric shock delivered through the heart to return it to a normal beat
Medications: drugs given to maintain a good blood pressure or a steady heartbeat Often these drugs give support during a short-term crisis and are stopped when no longer needed.
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DEFINITIONS & EXAMPLES
Cardiac Arrest (called a Code, Code Blue or Dr. 99): happens when the heartbeat and breathing stop An emergency medical team uses CPR, drugs, defibrillation and other measures to try and revive the person.
Patient 1 Mr. G, a 50 year old man, was at work when he began having chest pain and trouble breathing. An ambulance was called. After an IV line was placed, fluids and medication were given, and he was taken to the hospital. In the emergency room, his heartbeat became very fast and irregular. He lost consciousness and had no pulse. CPR was started at once, and his heart was defibrillated (shocked) back to a normal rhythm. Mr. G had had a heart attack and, after treatment in the coronary care unit, went home one week later. Patient 2 Mrs. H, an 82 year old woman, lived with her daughter. She had a history of 3 heart attacks and bypass surgery. She was admitted to the intensive care unit with fluid in her lungs and severe chest pain. Her heartbeat was very irregular, and her blood pressure was too low. Blood pressure drugs and other medications were started. After 2 days, her condition had improved very little. On the third day, her heart stopped beating. A “code” was called and CPR started. After 30 minutes, her doctor stopped the team’s efforts to revive her. Because of past heart damage, there was little chance that more CPR or drugs would be of any help.
DEFINITIONS & EXAMPLES
Ventilator (respirator or “breathing machine”): a machine that breathes for you or helps you breathe
Endotracheal or “Breathing” Tube: a tube placed in the lungs which can be attached to the ventilator
Patient 3 Mrs. W, a 66 year old woman, had pneumonia. When she got to the hospital, she was having trouble breathing. After giving her sedation, a breathing tube was placed and attached to a ventilator. After 4 days of antibiotics and IV fluids, Mrs. W was breathing well enough that she no longer needed the tube and ventilator. Patient 4 Mr. L, a 73 year old man, had emphysema and lived in a nursing home. Over a number of months, he developed severe shortness of breath. His doctor explained that if he were placed on a breathing machine, it was not likely that his lungs would get strong enough to breathe again without the machine. Mr. L asked his doctor to write an order in the chart telling the staff not to put in a breathing tube or connect him to a ventilator if he stopped breathing.
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DEFINITIONS & EXAMPLES
Kidney Dialysis: a machine connected to your body for a number of hours at a time It does the work of the kidneys when they can’t work on their own.
Patient 5 Ms. R, an 18 year old female, had a major infection that damaged her kidneys. Kidney dialysis was started in the hospital and done 3 times a week. She was able to finish high school and enrolled in college. A year later she had a kidney transplant and no longer needed dialysis.
Patient 6 Mr. N, an 85 year old man, had had a number of heart attacks over the past 25 years. Since his weak heart was not giving the kidneys the blood needed to work, there was almost no urine. A kidney machine would help the kidneys for a short time, but would not change the heart problem. After talking with his son, Mr. N decided not to have dialysis. He also asked his doctor not to try to revive him if a cardiac arrest occurred.
DEFINITIONS & EXAMPLES
Artificial Hydration (intravenous or IV fluids): salt and/or glucose fluids given through a vein when the patient is not able to drink enough Artificial Nutrition (feeding): liquid food fed through a tube placed in the stomach or nutrients given through a vein IV fluids and tube feedings are routine in serious illness. In many states, a person can ask that these be withheld if they would only delay death.
Patient 7 Mr. J, 65, had abdominal surgery. After surgery, he developed a serious infection that required IV fluids and antibiotics. He was so weak that he couldn’t eat enough for basic nutrition. A tube was placed in his stomach so he could get liquid food. The strong antibiotics caused his kidneys to fail. Kidney dialysis was done every 2 days. As soon as the infection cleared and the antibiotics could be stopped, Mr. J no longer needed the kidney machine or tube feedings.
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RELATED ISSUES
Related Issues Doctors must write orders on the chart if life support is not to be done. Without these orders, life support will be put in place even though you have a Living Will or a Durable Power of Attorney. Here’s what you do to make sure that this does not happen if advanced life support is not your wish. When can life support be withheld? It can be withheld if your doctor knows your wishes ahead of time. Most often, a Do Not Resuscitate (DNR) order is written only when there is no chance of recovery. While you are well, tell your doctor what you have decided about life support. Also, ask someone to speak for you if you should ever become terminally ill or injured and unable to communicate. This person can then let your doctor know what you want done, and a DNR or “No Code” order can be put on your medical chart. This order lets staff know that no CPR, defibrillation or drugs will be used if you have a cardiac arrest. (In some states, the next of kin or the patient’s spokesperson must also sign the DNR forms.) The DNR order can be canceled at any time by you or the person you have chosen to speak for you. After talking with the family, the doctor may cancel a DNR order if the patient has improved. In some cases, you may be able to choose to have part of the “Code” and refuse other parts. For example, you might choose to have drugs but refuse CPR. Find out your hospital’s DNR policy.
RELATED ISSUES
Patient 8 Ms. B, 36, had advanced breast cancer and was being cared for at home through hospice. The cancer had spread to her lungs and bones. She asked in writing (as part of her Living Will) that she not be given IV fluids or tube feedings if she became unconscious. She slipped into a coma a month later. Although it was very hard for her family, with the help of their minister they were able to follow her wishes. Her husband had been named to act for her (Durable Power of Attorney) and asked her doctor to write Do Not Resuscitate orders on her chart. Ms. B died 7 days later. Unless there is a DO NOT RESUSCITATE order in the medical chart, hospital staff must try to revive all persons who have a cardiac arrest. This includes those with a terminal illness.
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RELATED ISSUES
What is the difference between ordinary and extraordinary care? Ordinary care refers to routine treatments done to help a patient recover. This includes all medicines, therapies or operations. Extraordinary care “goes beyond” routine treatments. This kind of care is often a last effort to see if something may work. Ask your doctor what the chances of recovery would be. Advanced life support is “ordinary care” when there is hope for recovery. The same care may be “extraordinary” when underlying illness prevents any chance of recovery. Some people would prefer to let death occur on its own should they have severe dementia (like Alzheimer’s), permanent coma or stroke. Besides telling their doctor they do not want CPR or a breathing machine, they may also ask not to get IV fluids, tube feedings or antibiotics.
RELATED ISSUES
When can life support be stopped? In some states, life support can be stopped if there is proof that the person does not want the treatment to go on. Having a written document, like those talked about in this book, helps the doctor know how long to continue advanced life support. Brain death occurs when damage to the brain results in loss of all brain function. Many states recognize this loss to be death just like the permanent loss of heartbeat and breathing. In these cases, life support would be stopped. Organ donation is often a choice when vital organs like the heart, kidney and liver are still healthy at the time of death. Many states require that the family be asked about organ donation. Now is the time to let your family know how you feel about use of your organs. Then they will know your choice if this is ever an option.
Patient 9 While on a camping trip with friends, 15 year old J fell from the edge of a cliff hitting his head. He was rescued and taken to the hospital, but tests showed brain death. His parents decided to donate his heart and kidneys. Though his family was grieving, they felt that they could offer the gift of life to others. In this way, for them, J lived on. The times when life support is worthwhile are different for each patient. It will depend on both the medical status and the patient’s wishes.
Think about the times that you would agree to or refuse advanced life support.
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DECISIONS
Decide For Yourself About Advanced Life Support It is not just a matter of knowing whether you would want extraordinary care or advanced life support. You must also think about the degree of recovery you can expect from these treatments and what you are willing to live with. While healthy, talk with your doctor about the degree of recovery life support is likely to give. Then decide what is important to you. 1.
How would you define a “good life” for yourself? ❏ ❏ ❏ ❏ ❏ ❏ ❏
2.
being able to make a living being able to walk being able to drive a car being able to feed and dress myself being able to talk/communicate being free of pain other
Complete this statement: I would not want anything done to keep me alive if I could not
DECISIONS
3.
If there was no medical hope of your returning to what you think is a “good life,” would you want to have any of these? ❏ ❏ ❏ ❏ ❏ ❏
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CPR (cardiopulmonary resuscitation) kidney machine breathing machine artificial nutrition (tube feeding) artificial hydration (IV fluids) antibiotics
If you were in a coma or severe dementia and had no chance to recover, would you want treatment to help you survive a serious infection or other complication? ❏ Yes
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❏ No
Can you think of other medical conditions for which you would not want to be kept alive?
We cannot list here all of the medical crises or treatments that you may have. If you are unsure or confused about life support and other medical care, discuss these questions with your doctor and others. The laws about life support are not the same in every state. Check now to see what your state lets you do about refusing medical treatments. If you can’t find the answers, look for legal advice.
As you become clear about what you want, let your doctor, family and others close to you know your wishes.
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COMMUNICATION
Talk About Your Wishes Your family Talking about death is hard for family members but such talk is very important. During a medical crisis, loved ones may become confused and frightened. If asked to make decisions for you, they may not agree about what they think you wanted, may feel guilty about their decisions or may not be emotionally able to act for you. The problem is worse if they have not heard you express your feelings and had a chance to ask you questions. A friend or other chosen person When making end of life decisions, a minister, rabbi, priest, counselor or close friend can be very helpful. They can also help you and your family sort out feelings during difficult times. Life is precious, and it can be hard to “let go.” You might ask your family and close friends to read this book and go through this process of planning for themselves. This can help each of you focus on each other’s wishes about dying even when those wishes are not the same.
COMMUNICATION
Your doctor Be sure that your family doctor and any other doctors involved in your care know what you want them to do if there is no hope of getting well. It may be easier for you to discuss your feelings with your “primary” care doctor. A good time to talk about your wishes about life support is when you see your doctor in the office. Talking now can be less stressful than when you are very ill. Many patients find it hard to ask their doctors questions. Some want to pretend that all is going well despite symptoms to the contrary. Others wait for their doctors to talk to them. They may fear that their questions might upset or anger the person in charge of their care. But these feelings work both ways. Doctors sometimes find it hard to talk about a medical crisis when they can’t offer hope or a cure. Even though it may be uncomfortable, you, the doctor and family members (or others close to you) all need to make these decisions together. The hospital When you are admitted to a hospital, make sure all treatments and tests are explained. State your feelings and ask questions. If you find it hard to talk to your doctor, talk to your nurse or ask to see a social worker or chaplain. They will see that your doctor and others know what you want. Don’t take it for granted that everything is taken care of because you had one talk with your doctors.
You need to touch base often so that your doctors will know exactly what you want done.
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DOCUMENTATION
Put It In Writing There are a number of reasons to have your advance directives in writing. l. If you become very ill, you may not be able to speak for yourself. 2. The people who know your wishes may not be around during your medical crisis. 3. Family members may not agree about what you told them. 4. Family wishes may be honored first if the person you would like to speak for you is not named in a legal document like the Durable Power of Attorney for Health Care. Here are your written choices: The Living Will A Living Will states the kinds of treatment to be included and excluded during terminal illness, a vegetative state or coma. Each state has guidelines about the wording of a Living Will, its use and its limits. Find out what your state allows when filling out your papers. The person making a Living Will must be an adult (married, the parent of a child or at least 18 years old) and be of “sound mind� (able to make a knowing decision). You may change your decisions about medical care at any time. Some states require a renewal to keep a Living Will valid.
DOCUMENTATION
Limits of the Living Will l. The Living Will may only be valid when death is near. This will vary with each state. 2. In some states, the Living Will allows the refusal of life support such as CPR and breathing machines but not artificial hydration or nutrition. (Many states are now changing these laws.) 3. Having the Living Will or other papers in your chart is not enough to withhold CPR. The Living Will only gives permission to the doctor to write a Do Not Resuscitate (DNR) order if there is no chance of recovery. You, or the person chosen to speak for you, must also make sure that the doctor has written a DNR order in the chart. 4. A doctor’s order may be required to stop certain treatments such as the ventilator.
If you plan to fill out a Living Will, find out what the laws in your state allow. It may or may not cover all that you want it to include. If the Living Will in your state does not cover all of your wishes, you can leave other instructions called medical directives. These give more information to those you have chosen to act for you. For instance, a person might ask that he or she not be treated with antibiotics for an infection if in a coma or vegetative state. If the law allows the hospital and doctor to honor this request, the person would be kept comfortable and allowed to die naturally from the infection.
Find out what the laws in your state allow.
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DOCUMENTATION
The Durable Power of Attorney for Health Care Keep copies of your Living Will and Durable Power of Attorney where they are easy to get if needed.
This paper lets you name a person of your choice (18 or older) to speak for you if you can’t speak for yourself. In most cases, it covers any decision about the refusal or acceptance of medical care. Check your own state for the status of this law, or ask a lawyer. Most people will choose a close relative or a spouse to speak for them in a medical crisis. If you are naming a person who is not a legal relative, be sure that your family knows this. Much stress can occur if they do not know your choice. Samples of the Living Will and Durable Power of Attorney for Health Care are included in the back of this book. You can get forms for your state from: a local hospital; your doctor’s office; your lawyer; your state Hospital, Bar or Medical Association. You can fill them out or have your lawyer do it for you. Hospital staff may be able to guide you in filling them out. You can write to the address on page 34 for more information and for the correct forms for your own state. If you spend time in other states, you might want to have documents valid in the state(s) in which you visit often. Many states accept similar documents from other states.
Witnesses You will need two other people to sign all of your papers with you. Each state has guidelines for who can serve as a witness. If you are signing in a hospital, more signatures may be needed.
DOCUMENTATION
Patient 10 Twenty-six year old T went to the store on his motorcycle on a quick errand and was hit by a car. T was not wearing a helmet and suffered severe head injuries. Everything possible was done for him in surgery and in the intensive care unit (ICU), but there was no hope of recovery. T would never wake up, or have the use of his limbs or come off the breathing machine. He was given tube feedings and IV fluids. T had not talked about his wishes with his parents and had not signed a Durable Power of Attorney or made a Living Will. When bouts of pneumonia threatened his life, antibiotics were given. He was kept alive in the ICU for 10 months until his major body organs failed. Patient 11 Mr. P, 76, had a long history of heart disease and spent most of his time in bed. He had discussed his condition with his doctor and family and made some decisions about the end of his life. He did not want to be revived if he should have a cardiac arrest. Mr. P prepared and signed his Living Will and Durable Power of Attorney for Health Care, naming his wife as his agent. A few months later Mr. P began having chest pain that was not relieved by his usual medications and was taken to the hospital. Copies of his Living Will and Durable Power of Attorney were placed in his medical chart. Mr. P lost consciousness and was in critical condition in the intensive care unit. His wife asked the doctor to write the Do Not Resuscitate order according to Mr. P’s wishes.
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SUMMARY
Summary l. Decide how you feel about being kept alive by extraordinary means when there is little hope for a “good life” as you want it. 2. Let your doctor and those close to you know your wishes. 3. Put something in writing (a Living Will, Durable Power of Attorney for Health Care or other advance directives). 4. Take a copy of your papers with you when you are admitted to a hospital or when under the care of another doctor. Also, make sure a family member or someone else close to you has a copy of your papers. If you belong to a church or synagogue, give them a copy for their file. 5. If you are alert, talk often with those treating you. Make sure that your family or the person acting for you knows what to do for you if you are not able to talk or make your wishes known. Some people want every possible medical treatment during an illness no matter what the chance of recovery. Some wish to choose certain treatments and not others. However you feel, we recommend the 5 steps above in making your wishes known. If you are reading this book at a time when life is not threatened, end of life decisions are much easier. Start now. The outcomes of medical treatment can’t always be known, but your doctor can help you predict what may happen. If you know the possibilities and your rights, you and your family will be more prepared when the time comes to make decisions about ordinary and extraordinary care. When you and the medical team make these decisions together, there are fewer surprises, and you can better cope with outcomes.
A PERSONAL EXPERIENCE
The Author’s Personal Experience Before you read this, let me say that my mother did not have a Living Will or any other written document in place when she died. However, her end of life decisions were honored for several reasons: My mother was alert when in the hospital and able to communicate with her family and the professionals caring for her. And we were in a top-rate coronary care unit where staff believed in talking about all the options regarding heroic measures and honoring whatever decision the patient and family made. I would not trust this luck again. Here’s how it went for our family.
“I’d rather die.” I had heard my mother say this many times—about going to a nursing home, about not being able to take care of herself, about being dependent on her children or others. Now the words had a different ring to them as my mother was facing the choice of having a fairly risky procedure or waiting for the very probable heart attack that could happen at any time. At first she waited for the doctor (a specialist she had never seen before) to tell her what to do. Like most of us, it never occurred to her that she could take part in the decision. I said, “Mother, you need to think about this and decide which risk you had rather take.” Finally she said, “Well, if I have this procedure and it works, can I live normally? I certainly don’t want to be an invalid, but if it will keep me going, I guess I would rather risk having it done.” She was 85 years old, lived on her own, was very active and enjoyed life. To do nothing seemed too much like giving up. After all, her first symptoms of heart disease had started just a couple of years before when she was doing her daily sit-ups.
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A PERSONAL EXPERIENCE
The procedure went well. Mother was alert, and a short hospital recovery time was expected. During frequent checks, the nurses explained everything and seemed to expect all of us to be totally involved. They reacted quickly when she began having chest pain. A tiny cloud settled over our family as well as the hospital staff. Mother lay quietly as if not moving would somehow help. She seemed so fragile as I held her hand. After a few more hours, the doctor told us that they needed to repeat the procedure in order to stop the chest pain. Mother asked several questions including whether she was strong enough to go through the procedure a second time. She finally agreed to have it done again but reminded the doctor that she did not want to be saved if it meant she would be an invalid. We also talked to the nurses about Mother’s wishes because there were so many doctors involved by this time that we were never quite sure who would be doing what. The nurses assured us that they understood what my mother wanted and would keep the doctors informed. The procedure was done, and we were hopeful. The doctors thought her heart had a good chance this time. Mother bounced back and wanted to know how many days she would be in the hospital. She was sure that her insurance premium was due and reminded us to check her mail. The staff enjoyed her gutsiness and wit. But when I got to the hospital the next morning, Mother was on a ventilator. Split second decisions had been made during the night to save her life. My sister and I began to worry not only about the outcome but
A PERSONAL EXPERIENCE
also about all the things that might be done to or for Mother if things got worse. Could she be taken off the ventilator even if it meant that she would die? She would not want to be kept alive by a machine if she could not get better. Her only directions to the doctors were verbal. We began to wonder if she would need a Living Will or at least something in writing. Her condition improved, and she was taken off the ventilator. When she was feeling well enough, we asked for another bedside conference with her doctors. They explained the complications: She needed blood thinning drugs to keep the arteries to her heart open, but the same drugs were causing her to bleed elsewhere. They explained that she would very likely have a heart attack if they stopped the blood thinning drugs. They did not know if she would survive the attack. Mother decided that she did not want anything else done. She appreciated what they had tried to do, but her final decision was, “Whatever is to be will be.� Mother spent the next day and night in relative comfort, visiting with her children and friends. She was calm but alert, and her doctors checked on her often. Their reluctance to give up extraordinary treatment was obvious, but their respect for her choice and dignity was also real. The nurses gave continued support to Mother and our family. Then, Mother slipped into a coma. Family honored her wishes and asked that nothing more be done. A DNR order was then written on her chart. From this point on, family, friends and the hospital staff continued to give her comfort and care as if she were alert. Throughout the day
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A PERSONAL EXPERIENCE
the nurses did special things for her like washing and combing her hair, rubbing her feet and putting lotion around her lips. Family and friends were able to come and go as they pleased, and most of us spent some time at her bedside, holding her hand and talking to her as if she were still able to respond. Towards the end, many of us gathered around her bed and held her hands or touched her until she finally slipped away. She had made her choices, and we were all allowed to be a part of those choices. She worked with the medical team and took advantage of the best medical care available. She enjoyed life, but when the odds were no longer in her favor, she declined further efforts that she thought would traumatize her last days and possibly rob her of her much valued independence. It might not have gone this smoothly had this particular hospital staff not been so in tune with honoring the wishes of the patient and her family. It was very hard to accept the reality that my mother walked into the hospital expecting a short stay and gave up her life seven days later. There is no doubt that if we had not been totally open in our dialogue with the medical staff, I would have had many unresolved feelings. There is also little doubt that she could have lived for many more days on a life support system. Because of the discussions that took place, I know that the choices she made were reasonable. I can also take comfort in the fact that my mother did not die alone somewhere, perhaps unable to call for help. She died with her entire family and many friends around her. The experience had a deep spiritual meaning for her and for us.
A PERSONAL EXPERIENCE
In concluding, I would say that our experience was made easier for these three reasons: 1. There was ongoing, open discussion among my mother, our family and staff. 2. Mother was alert and able to make choices about how she wanted to live. 3. All of her children were in total agreement on how her wishes should be honored. None of us is guaranteed to be as fortunate as my mother, and I did not want to risk not being in control if my own health failed. I now have a Living Will stating my wishes and have prepared a Durable Power of Attorney for Health Care naming someone to represent me if I need it.
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NOTES
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QUESTIONS & ANSWERS
Questions & Answers Q: How does being pregnant affect my right to make a Living Will? A: A Living Will, giving instructions to withhold life support, may not be honored during pregnancy if the fetus is alive. Laws vary from state to state.
Q: What if a person has Alzheimer’s disease? How can this person have a Living Will signed? A: A person must be of sound mind in order to prepare a Living Will. If someone is not able to make decisions due to mental problems, then another person (like a spouse or next of kin) may act in his or her behalf. It would be best to seek legal advice in this matter. Much will depend on how severe the disease is.
Q: What if I want to make a change in my Living Will? A: Changes can be made at any time. A new copy of the Living Will must replace the old copy. The old copy must be destroyed, marked “Void” or otherwise made to be no longer in effect. Be sure that your doctor and family are aware of changes and of any new papers.
Q: How do I go about getting Living Will and Durable Power of Attorney for Health Care forms for my state? A: Call your state’s Medical, Bar or Hospital Association. See page 34 for an address and phone number.
QUESTIONS & ANSWERS
Q: If I have a Living Will, does it mean that I will not be given CPR if my heart stops? A: No. Emergency care such as CPR will be done unless a Do Not Resuscitate (DNR) order is on your chart.
Q: Do I have to have a Living Will and Durable Power of Attorney for Health Care? A: No. It is not a law that you must have either of these. Federal law requires that hospitals or clinics ask if you have signed these forms. But it is a good idea to fill out these papers so that your wishes will be carried out if you are not able to speak for yourself.
Q: Why do I need both a Living Will and a Durable Power of Attorney for Health Care? A: In most cases it is best to have both. The Living Will states what kinds of support you want or do not want in the event of a terminal illness or coma (depending on state laws). The Durable Power of Attorney is a more flexible form which names another person to make medical decisions for you if you are not able to do so. The Durable Power of Attorney lets you be more specific about the kinds of life support and medical care you would want.
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WHERE TO WRITE
The Living Will and Durable Power of Attorney for Health Care in this book are 1992 samples from the State of Georgia. To get a copy of these forms for your state, write to the address below. There is no charge for one copy of each.
Choice In Dying 10th Floor 200 Varick Street New York, NY 10014 (212) 366-5540 You may also get these forms from: a local hospital; your doctor’s office; your lawyer; or your state Hospital, Bar or Medical Association.
SAMPLE FORMS
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Living Will STATE of GEORGIA Living will made this
day of
, 19
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, being of sound mind, I, (Name) willfully and voluntarily make known my desire that my life shall not be prolonged under the circumstances set forth below and do declare: 1. If at any time I should (check each option desired): ❏ have a terminal condition, ❏ become in a coma with no reasonable expectation of regaining consciousness, or ❏ become in a persistent vegetative state with no reasonable expectation of regaining significant cognitive function, as defined in and established in accordance with the procedures set forth in paragraphs (2), (9), and (10) of Code Section 31-32-2 of the Official Code of Georgia Annotated, I direct that the application of life-sustaining procedures to my body (check the option desired): ❏ including nourishment and hydration, ❏ including hydration but not nourishment, or ❏ excluding nourishment and hydration, be withheld or withdrawn and that I be permitted to die; 2. In the absence of my ability to give directions regarding the use of such life-sustaining procedures, it is my intention that this living will shall be honored by my family and physician(s) as the final expression of my legal right to refuse medical or surgical treatment and accept the consequences from such refusal; 3. I understand I may revoke this living will at any time; 4. I understand the full import of this living will, and I am at least 18 years of age and am emotionally and mentally competent to make this living will; and 5. If I am female and I have been diagnosed as pregnant, this living will shall have no force and effect unless the fetus is not viable and I indicate by initialing after this sentence that I want (Initial) this living will to be carried out. Signed (City)
, (County)
,
and (State of Residence)
. continued on page 36
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SAMPLE FORMS
I hereby witness this living will and attest that: 1. The declarant is personally known to me and I believe the declarant to be at least 18 years of age and of sound mind; 2. I am at least 18 years of age; 3. To the best of my knowledge, at the time of the execution of this living will, I: (A) Am not related to the declarant by blood or marriage; (B) Would not be entitled to any portion of the declarant’s estate by any will or by operation of law under the rules of descent and distribution of this state; (C) Am not the attending physician of declarant or an employee of the attending physician or an employee of the hospital or skilled nursing facility in which declarant is a patient; (D) Am not directly financially responsible for the declarant’s medical care; and (E) Have no present claim against any portion of the estate of the declarant; 4. Declarant has signed this document in my presence as above-instructed, on the date above first shown. Witness Address Witness Address Additional witness required when living will is signed in a hospital or skilled nursing facility.
I hereby witness this living will and attest that I believe the declarant to be of sound mind and to have made this living will willingly and voluntarily. Witness: Medical director of skilled nursing facility or staff physician not participating in care of the patient or chief of the hospital medical staff or staff physician or hospital designee not participating in care of the patient.
SAMPLE FORMS
Durable Power of Attorney for Health Care STATE of GEORGIA NOTICE: The purpose of this Power of Attorney is to give the person you designate (your agent) broad powers to make health care decisions for you, including power to require, consent to, or withdraw any type of personal care or medical treatment for any physical or mental condition and to admit you to or discharge you from any hospital, home, or other institution; but not including psychosurgery, sterilization, or involuntary hospitalization or treatment covered by Title 37 of the Official Code of Georgia Annotated. This form does not impose a duty on your agent to exercise granted powers; but, when a power is exercised, your agent will have to use due care to act for your benefit and in accordance with this form. A court can take away the powers of your agent if it finds the agent is not acting properly. You may name coagents and successor agents under this form, but you may not name a health care provider who may be directly or indirectly involved in rendering health care to you under this power. Unless you expressly limit the duration of this power in the manner provided below or until you revoke this power or a court acting on your behalf terminates it, your agent may exercise the powers given in this power throughout your lifetime, even after you become disabled, incapacitated, or incompetent. The powers you give your agent, your right to revoke those powers, and the penalties for violating the law are explained more fully in Code Sections 31-36-6, 31-36-9, and 31-36-10 of the Georgia “Durable Power of Attorney for Health Care Act” of which this form is a part. That act expressly permits the use of any different form of Power of Attorney you may desire. If there is anything about this form that you do not understand, you should ask a lawyer to explain it to you. Durable Power of Attorney made this
day of
199
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1. I, (Name) , hereby appoint (Name) a s my attorney in fact (my agent) to act for me and in my name in any way I could act in person to make any and all decisions for me concerning my personal care, medical treatment, hospitalization, and health care and to require, withhold, or withdraw any type of medical treatment or procedure, even though my death may ensue. My agent shall have the same access to my medical records that I have, including the right to disclose the contents to others. My agent shall also have full power to make a disposition of any part or all of my body for medical purposes, authorize an autopsy of my body, and direct the disposition of my remains. The above grant of power is intended to be as broad as possible so that your agent will have authority to make any decision you could make to obtain or terminate any type of health care, including withdrawal of nourishment and fluids and other life-sustaining or death-delaying measures, if your agent believes such action would be consistent with your intent and desires. If you wish to limit the scope of your agent’s powers or prescribe special rules to limit the power to make an anatomical gift, authorize autopsy, or dispose of remains, you may do so in the following paragraphs. continued on page 38
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SAMPLE FORMS
2. The powers granted above shall not include the following powers or shall be subject to the following rules or limitations (here you may include any specific limitations you deem appropriate, such as your own definition of when life-sustaining or death-delaying measures should be withheld; a direction to continue nourishment and fluids or other life-sustaining or death-delaying treatment in all events; or instructions to refuse any specific types of treatment that are inconsistent with your religious beliefs or unacceptable to you for any other reason, such as blood transfusion, electroconvulsive therapy, or amputation);
The subject of life-sustaining or death-delaying treatment is of particular importance. For your convenience in dealing with that subject, some general statements concerning the withholding or removal of life-sustaining or deathdelaying treatment are set forth below. If you agree with one of these statements, you may initial that statement, but do not initial more than one.
I do not want my life to be prolonged nor do I want life-sustaining or death-delaying treatment to be provided or continued if my agent believes the burdens of the treatment outweigh the expected benefits. I want my agent to consider the relief of suffering, the expense involved, and the quality as well as the possible extension of my life in making decisions concerning life-sustaining or death-delaying treatment. Initialed I want my life to be prolonged and I want life-sustaining or death-delaying treatment to be provided or continued unless I am in a coma, including a persistent vegetative state, which my attending physician believes to be irreversible, in accordance with reasonable medical standards at the time of reference. If and when I have suffered such an irreversible coma, I want life-sustaining or death-delaying treatment to be withheld or discontinued. Initialed I want my life to be prolonged to the greatest extent possible without regard to my condition, the chances I have for recovery, or the cost of the procedures. Initialed
SAMPLE FORMS
This Power of Attorney may be amended or revoked by you at any time and in any manner while you are able to do so. In the absence of an amendment or revocation, the authority granted in this Power of Attorney will become effective at the time this power is signed and will continue until your death and will continue beyond your death if anatomical gift, autopsy, or disposition of remains is authorized, unless a limitation on the beginning date or duration is made by initialing and completing either or both of the following:
3. ( ) This Power of Attorney shall become effective on (insert a future date or event during your lifetime, such as court determination of your disability, incapacity, or incompetency, when you want this power to first take effect). 4. ( ) This Power of Attorney shall terminate on (insert a future date or event, such as court determination of your disability, incapacity, or incompetency, when you want this power to terminate prior to your death). If you wish to name successor agents, insert the names and addresses of such successors in the following paragraph:
5. If any agent named by me shall die, become legally disabled, incapacitated, or incompetent, or resign, refuse to act, or be unavailable, I name the following (each to act successively in the order named) as successors to such agent:
If you wish to name a guardian of your person in the event a court decides that one should be appointed, you may, but are not required to, do so by inserting the name of such guardian in the following paragraph. The court will appoint the person nominated by you if the court finds that such appointment will serve your best interests and welfare. You may, but are not required to, nominate as your guardian the same person named in this form as your agent.
6. If a guardian of my person is to be appointed, I nominate the following to serve as such guardian: (insert name and address of nominated guardian of the person)
7. I am fully informed as to all the contents of this form and understand the full import of this grant of powers to my agent. Signed Principal continued on page 40
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SAMPLE FORMS
The principal has had an opportunity to read the above form and has signed the above form in our presence. We, the undersigned, each being over 18 years of age, witness the principal’s signature at the request and in the presence of the principal, and in the presence of each other, on the day and year above set out. Witnesses:
Addresses:
Additional witness required when health care agency is signed in a hospital or skilled nursing facility. I hereby witness this health care agency and attest that I believe the principal to be of sound mind and to have made this health care agency willingly and voluntarily. Witness: Attending Physician
Address: You may, but are not required to, request your agent and successor agents to provide specimen signatures below. If you include specimen signatures in this Power of Attorney, you must complete the certification opposite the signatures of the agents.
Specimen signatures of agent and successor(s)
I certify that the signature of my agent and successor(s) is correct.
(Agent)
(Principal)
(Successor Agent)
(Principal)
(Successor Agent)
(Principal)
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Write or call toll free for our catalog of prices and product descriptions. ISBN 0–939838–34–6
Decide for Yourself a book to help you make end of life decisions
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Life Support
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Living Will
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Durable Power of Attorney for Health Care
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Copyright © 1993 Pritchett & Hull Associates, Inc. All rights reserved. No part of this book may be photocopied, reprinted or otherwise reproduced without written permission from Pritchett & Hull Associates, Inc.
Library of Congress Cataloging-in-Publication Data Brown, Carolyn, 1953– Decide for yourself:life support, living will, power of attorney for health care / by Carolyn Brown, Julia Ann Purcell, and Sue Pritchett. p. cm. Includes index. ISBN 0–939838–34–6 (pbk.:alk. paper) 1. Terminal care. 2. Right to die. 3. Physician and patient. I. Purcell, Julia Ann, 1943– . II. Pritchett, Sue, 1933– . III. Title. [DNLM: 1. Euthanasia, Passive—United States. 2. Life Support Care—United States. 3. Living Wills. 4. Right to Die—United States—popular works. W 50 B877d] R726.B77 1992 174'.24—dc20 DNLM/DLC 92–19858 for Library of Congress CIP
Printed in the U.S.A.