Advice for Future Corpses_and Those Who Love Them

by Sallie Tisdale

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  Appendix 2:

  Advance Directives

  A third of Americans over sixty-five will spend time in an ICU in the three months before they die, facing surgery or other aggressive treatments intended to keep them living as long as possible. I doubt if they all really want to do that. The same people who say they have thought a great deal about their wishes at the end of life have never discussed those wishes with their doctor or family, or even written them down.

  An advance directive (sometimes called a living will) is a form in which you explain what you want done to save or prolong your life if you are unable to make decisions for yourself. The directive includes questions about ventilators, tube feeding, antibiotics, and other life-supporting treatments. Many people assume that advance directives have legal weight. They do not. The directive is intended to advise your treating doctors and representative in making appropriate choices. It also protects health care professionals and representatives from charges of neglect or mistreatment if they follow your wishes.

  One of the problems with advance directives is that many people have little experience with death and don’t understand the repercussions of treatments that may be called for in a life-threatening emergency or terminal illness. You may have an unrealistic idea of your own willingness to tolerate illness, loss of function, or aggressive medical care. A person who is familiar with aggressive medical treatment can err on the other side. My own inclination is to say, No ventilator, ever, but there are times when a short-term ventilator makes sense, such as after trauma to the chest. The directive should be nuanced.

  The advance directive helps you to consider the many possibilities that may arise. There are different versions of the directive from state to state, with more or less granularity. The one I’ve filled out, for Oregon, starts with a section called Close to Death:

  If I am close to death and life support would only postpone the moment of my death:

  A. INITIAL ONE:

  ____ I want to receive tube feeding.

  ____ I want tube feeding only as my physician recommends.

  ____ I DO NOT WANT tube feeding. (Capital letters included.)

  B. INITIAL ONE:

  ____ I want any other life support that may apply.

  ____ I want life support only as my physician recommends.

  ____ I want NO life support.

  This is followed by sections titled Permanently Unconscious, Advanced Progressive Illness, and Extraordinary Suffering, with the same options for each. There is a further section for General Instructions that allows you to reiterate your wishes and gives you room to be as detailed as you can.

  An advance directive from the United Kingdom goes into significantly more detail about forms of pain and suffering, incapacity, immobility, physical helplessness, burdens to family and loved ones, and specific medical interventions, including artificial nutrition and hydration, bladder catheterization, enemas, being hand-fed, and respiratory support. I would prefer to use this one, and intend to add this kind of detail to my state’s directive. As an example, the UK directive includes these options:

  My reaction to profound dementia to the point where I can no longer recognise my loved ones and interact with them in a coherent fashion:

  ____ intolerable; I prefer death

  ____ a very negative factor, to be weighed with other factors in determining intolerable indignity

  ____ tolerable

  Many people will find such questions easy to answer, but it’s easy to get hung up, argue with the wording, and ask what-if questions. Think about how you define quality of life, and consider illness, pain, disability and dependence, cognitive decline, and specific symptoms like having trouble breathing. Consider addressing specific treatments like dialysis, ventilators, antibiotics, sedation, and pain control. Become familiar with the possibilities.

  After you fill out the form, there is space to add a short statement about why you answered as you did. This is a really important part of the form. Define your personal values around life and death so that your representative and doctors can understand your intent. Explain your reasons in detail. Life-threatening situations usually require sets of related decisions, not a single choice. Knowing your reasons will help guide the people who must make decisions under the pressure of time and strong emotion.

  The advance directive allows you to appoint a health care representative who is empowered to make decisions for you if you cannot. In spite of all the complicated chores my friend Thomas had to handle after Kevin died, he didn’t have to fight for the right to do so. They weren’t married but they had done all the paperwork: wills, advance directives, health care representative, and powers of attorney.

  Be sure you choose a representative who understands and accepts your wishes, is truly willing to carry your wishes forward, and can be assertive in the face of emergent decisions and pressure from medical providers who might disagree with your hopes. Be sure that your health care representative is comfortable making hard choices and not easily cowed. It really can’t be emphasized enough that your representative needs to be willing to be your representative, to speak for you when you can’t speak for yourself. If your answer is no, the representative must be willing to say no. If a doctor balks at the representative’s wishes, the representative can ask the doctor to step aside. If a hospital balks at the representative’s requests—which may happen in a religious institution—the representative can request a transfer to another hospital or simply a discharge. A medical ethicist has done research into why doctors sometimes don’t follow advance directives, and has found two main reasons. The first is that the document is too vague or asks for the impossible. The second reason, he adds, “is that the doctor is a jerk and is practicing unethical medicine.” If the representative feels blocked in fulfilling the advance directives, he or she can demand to speak to the quality assurance department or ask for an ethics consult. The last resort is a judge.

  Don’t c
hoose a representative who works on your health care team or anyone employed by the institution or agency providing treatment. (They should know better, anyway.) Don’t choose a person who works for an agency helping to pay for your care. Be very wary about choosing a member of your immediate family. A friend who knows your values and can handle a crisis is ideal. John Abraham, an Episcopal priest who has done death education for decades, suggests you find a person who “is able to refuse useless medical efforts, exhibit moxie and equanimity when under stress, and not capitulate when confronted” by recalcitrant staff. The representative, he adds, should be someone who “can be a ‘son-of-a-bitch.’ ”

  Have a frank and detailed conversation with your primary doctor now, if you can. You may have to block the door of the exam room to do this. Many doctors do not allow for the kind of time such a conversation requires, and they are poorly compensated when they do. If you can’t pin your doctor down on his beliefs about end-of-life care, consider changing doctors. If he or she won’t make time to talk to you now, while you’re still walking around and eating your oatmeal, what’s going to happen when you’re fading out and everyone’s shouting? You deserve to talk about it first.

  If you are ill or frail, have another detailed conversation about the risks, benefits, and possible outcomes of your treatment. What can be anticipated? What cannot? You may be looking at radiation, chemotherapy, blood transfusions, tube feeding, and breathing support, as well as the possibility of resuscitation. All are possible treatments for a person with a serious illness, and all have risks as well as benefits. What are the side effects? What are the rare and probably-will-never-happen events that could lead to someone having to make a crucial decision in a hurry?

  Talk to your partner, your children, and your parents. If a particular member of your family strongly disagrees with your choice, don’t include them in the conversation. If you are concerned about their influence, name that person on your form as someone who is not allowed to make decisions for you and perhaps should not be involved in any meetings with your doctor. This isn’t the time to worry about hurting Aunt Josie’s feelings.

  The directive does you no good if it is hidden in a drawer or locked in a safe deposit box, is many years out of date, or names a representative who is either no longer close to you, unaware that he or she is your representative, or uncomfortable with your wishes. After you fill out an advance directive, give a copy to your primary care physician, to the health care representatives you’ve named, and to a few close family and friends. Then talk about it. It’s a good idea to sign and date the directive every few years, and again if you become ill, so that decision makers are aware that these are recent wishes and not the fantasy of long ago.

  A second form that may be available to you is called the POLST, physician’s order for life-sustaining treatment. Oregon was the first state to offer POLST, and it is now widely available. This is a legal doctor’s order that defines how much and what kind of life support you want to receive if you can’t make a decision for yourself. Its use is restricted to people in poor health. This is the form that will have the most immediate influence on critical medical decisions about aggressive life support such as CPR and ventilators. Often a POLST—usually bright pink and hard to miss—will be posted on the refrigerator in a person’s home, and paramedics know to look for it. The POLST should travel with the person when they go to the hospital. You can even carry a small version in a necklace or bracelet. The POLST is now electronic in Oregon as well: http://polst.org

  You might also want to designate a person to act as your durable power of attorney for health care. This is a legal representative who can make any and all treatment decisions for you if you cannot, whether or not you have an advance directive. The National Hospice and Palliative Care Organization provides links to the advance directive form recognized in each state: http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289.

  Appendix 3:

  Organ and Tissue Donation

  Donating any part of the body is best planned well in advance. In the United States, when a person dies in a hospital, the staff is required to ask about organ donation, but not everyone is a candidate. Each case will be considered individually, so don’t hesitate to ask. There is no age limit, and people can be donors even if they have a serious illness. If you are with a person who is a tissue, organ, or whole-body donor, be prepared to contact the donor help line as soon as possible after death.

  Eyes can be donated by almost everybody. Donor eyes are used to cure corneal blindness as well as in research. They are harvested within six hours of death. The procedure is quick, discreet, and not disfiguring.

  Almost everyone can be a tissue donor, and tissues can be recovered several hours after death. Tissues are used in several ways: heart valves and middle-ear bones are transplanted, tendons are used in knee surgeries, and skin is used for burns. Ground-up bone can be used to make dental implants or replace lost bone. Be aware that donated tissue may also be used in for-profit procedures like cosmetic surgery, and when you decide to be a donor, you may not know how it will be used.

  Tissue donation can be done in two ways. You can do a whole-body donation in which organs and cells are taken and distributed to research laboratories and universities. In this case the body will be cremated within a few weeks and the ashes returned to the family. You can also have specific tissues removed and the body returned within a day for burial or cremation.

  A person may become an organ donor when he or she enters an irreversible condition they cannot survive, such as a massive cardiac arrest that destroys the heart’s ability to function. Such a person is called a “non-heart-beating donor.” After the proxy decides to stop aggressive support and allow natural death to occur, the person is taken to an operating room. The ventilator and drugs are stopped, the person is declared dead, and organs are removed immediately.

  Brain death can be caused by any permanent large brain injury, such as a massive stroke or trauma. Brain death (now often called total brain failure) is an objective, quantifiable state. A coma alone is not brain death: people often recover from a coma. In brain death, there is no possibility of recovery. A persistent vegetative state is not brain death. A person in a vegetative state has a functioning brain stem but no conscious activity in the brain itself. They have reflexive, uncontrolled physical movements and sleep and wake cycles, and may make sounds, but are not conscious in any way.

  The first step in diagnosis is determining the cause and ruling out conditions that can mimic brain death, like poisoning or hypothermia. Then the person is stabilized as much as possible: electrolyte imbalances are corrected, body temperature and blood volume are corrected, and blood pressure is brought to normal, usually with drugs. The set of tests done to determine the diagnosis may vary from one hospital to another, but a generally accepted set of criteria is used. The diagnosis is made over hours or days by a team of specially trained physicians who have no personal interest in the result. (Physicians who might be involved in organ transplantation do not participate in the diagnosis.)

  A lot of people assume that brain death is proven with a flat electroencephalogram (EEG) measurement (poetically known as electrocerebral silence). It’s an important part of the exam but not sufficient, as a few other conditions can cause a flat EEG, like hypothermia. Tests are done for any response to stimulation and reflexes moderated by the brain, such as stroking the cornea of the eye. A body without a functioning brain may still move in primitive ways, due to reactions in the spinal cord and peripheral nerves. The face, fingers, toes, and arms may contract and the entire trunk may shiver and twist. A particular contraction of the neck muscles can cause a body to almost sit up or turn the head to one side; this is known as the “Lazarus sign.”

  All these tests may be repeated more than once. Finally, an apnea test is performed. While the body—which may yet be a person; that’s what’s being tested—is still getting oxygen, the ventilator is disconnected. If the body makes no effo
rt to breathe for about ten minutes, that’s an important proof.

  People with brain death continue to have a heartbeat, because the heart has its own pacemaker and often will continue to beat as long as there is oxygen, though the person will require advanced support such as ventilators and drugs to maintain blood pressure. The brain manages the critical functions of the body. Even with a beating heart, almost everyone diagnosed with brain death has what is known as “somatic death” within a week: the organs and systems simply collapse, unable to function. If organs are going to be donated, it is usually done soon after the diagnosis is reached.

  I have hesitated throughout this discussion between the words person and body. Brain death is death. A person on a ventilator with a beating heart and brain death has died. The phrase sometimes used is beating-heart cadaver. A neurologist says that he tries to avoid the term life support in a brain-dead person, because it confuses the issue. He prefers organ support.

  That is the textbook explanation. This is how it sometimes goes: My friend Stephanie was a primary care physician in a small town. The last time I saw her, she talked passionately about the number of people with diabetes and poor nutrition, and her ideas for how to fix everything. Stephanie was a fixer of problems, idealistic about the possibility of doing so, and impatient to get on with it.

  The whole town was covered in a big snowstorm, and she decided to go sledding with her fiancé and friends. She slid down a long hill into an intersection and was hit by a truck. Her injuries were massive, and the phrase no hope of recovery was used almost immediately. The Life Flight helicopter was able to get her to the nearest trauma center. Her parents were in another state, enjoying a sunny vacation. They couldn’t get back because of the storms; they waited in airports and hotels for days while flight after flight was canceled.

  This is how it usually goes: not organs but a person. A life. And an excruciating choice. Stephanie’s parents were finally able to make it to the hospital, and a day later announced that she had died and been an organ donor—“her last gift,” in her father’s words.