A Guide To Health Care Decision Making
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Through advances in medical technology, some patients who formerly would have died can now be kept alive by artificial means. Sometimes a patient may desire such treatment because it is a temporary measure potentially leading to the restoration of health. At other times, such treatment may be undesirable because it may only prolong the process of dying rather than restore the patient to an acceptable quality of life. In any case, each person is seen, under the law, as having the personal right to decide whether to institute, continue or terminate such treatment. As long as a patient is mentally competent, he or she can be consulted about desired treatment. When a patient has lost the capacity to communicate, however, the situation is different.
Although New York has no statute on the question, there are state and federal court decisions that have established the right of an incompetent or comatose patient to have his or her wishes respected, as long as those wishes are known. New York law requires clear and convincing evidence of what the patient would want. Of all the various acceptable forms of evidence, a health care declaration (often called a "Living Will") can be the best. It simply documents a person's wishes concerning treatment when those wishes can no longer be personally communicated. Even in New York, such a document is recognized if it is clear, specific and unequivocal.
The following guide will help you prepare such a document if you have wishes you want respected. You should realize that if you do not express your views, treatment to maintain your life, by whatever means available, will probably be provided once you are no longer able to communicate, even if family members object. Therefore, if there are conditions under which you would not want treatment, it is important that you communicate your wishes while you are able to do so. In addition, because it is important that your wishes be documented in the most effective way possible, it is recommended that you consult your attorney in regard to the preparation of a health care declaration.
Although some people know now that they will never want a certain kind of treatment, under any circumstances, this attitude is rare, since many medical conditions are reversible and most would agree that even an unpleasant treatment could be tolerated for a short time. More commonly, people have conditional wishes. That is, they wish to receive or refuse specific treatments under certain circumstances.
Unless you want to refuse a certain type of treatment under all circumstances, you should pay close attention to the conditions you wish to have trigger your requests. There are generally two broad types of situations in which a health care declaration may apply. The first is terminal illness; the second is permanent disability.
In terminal illness (where death is expected in a relatively short time), people often fear treatment that only extends life without restoring a desired quality of life. While such treatment may be acceptable for some, for others it is not. If you lose the ability to communicate, your doctors may assume you want your life extended as long as possible. If you prefer a shorter, but more comfortable life during a terminal illness, you can request it. Most standard health care declarations do address terminal illness, and most doctors readily respect the wishes expressed with respect to terminal care.
Unfortunately, many health care declarations fail to address the other major fear -- permanent disability. It is more difficult to reach any consensus regarding permanent disability for two reasons. One reason is that doctors and other health care workers may attempt to apply their own value system to a patient's case. While they may agree to withhold attempts to prolong life in terminal illness, they may vigorously oppose withholding treatment for chronic illness.
The second reason is that the variety of chronic impairments is so great that individuals widely disagree as to what constitutes an intolerable situation. For example, some may dread a stroke that leaves them unable to communicate. Others fear permanent dependency on others or the impaired thinking resulting from dementia or Alzheimer's. Simply put, the circumstances that trigger the application of a health care declaration to chronic illness are different for each individual. Each of us must decide what circumstances, if any, we would not wish to endure. The triggering circumstances need to be defined as specifically as possible in terms of three primary factors: type, severity, and permanence or irreversibility. Terms such as "loss of dignity" or "impaired ability to communicate" should be avoided because they may mean different things to different people. A minor stroke causing slurred speech, for example, may not be what some mean by "impaired ability to communicate."
How do we determine permanence or irreversibility? Unfortunately, in many cases, the best we can do is to observe for a period of time. Failure to improve over the short run may indicate a poor prognosis in certain types of cases. The best example is brain damage due to lack of oxygen (such as after a cardiac arrest, or a stroke). The longer a patient is unconscious, the less likely it is that full capacity will be regained. After such an event, it is impossible to predict immediately who will regain prior capacity, and who will remain in a severely impaired state. Most people who will improve significantly show signs of progress in the first few days, and generally within the first two weeks. It is usually reasonable to observe a patient for this period, knowing that someone who does not wake up after two weeks is more likely to remain in a coma or a persistent vegetative state (a condition in which there appear to be sleep-wake cycles, but no conscious thinking during the "awake" periods.)
Fortunately, this type of predictor (waiting and watching) lends itself well to the need for specificity in the health care declaration. You can easily pick a time limit and state it in the document. Your doctor can give you prognosis guidelines to help individualize your requests. The important thing to remember is that a time limit (even a long one) protects against permanent maintenance in an undesirable state since a time limit is an unequivocal instruction. One can still use words like "permanent," "irreversible" and "hopeless," but these alone (without time limits) are harder to interpret.
One last point should be made about circumstances. Many people decide to make a health care declaration after witnessing the medical treatment of a friend or relative. This first hand experience may be important in providing emphasis and weight to your statements. Although no two sets of circumstances are identical, your real-life experience demonstrates a familiarity with at least one type of circumstance you wish to avoid. You should not confine your comments to that one situation, however, unless you want to limit the application of your health care instructions to that type of circumstance. Furthermore, you should share and elaborate upon your feelings about these experiences with your family, physicians and others who are close to you.
If you wish treatment (or certain treatments) to be withheld when you are no longer able to speak for yourself, you should be specific about the types of treatment you mean. Many standard health care declarations instruct physicians to withhold "extraordinary care" or "life-sustaining or life-prolonging" treatments. These instructions are difficult to interpret and are less likely to be respected than those that are more specific.
A distinction between ordinary and extraordinary care, if there ever was one, may have less meaning for many people today. Complex, expensive, high-tech treatments are now commonplace and, therefore, are hardly "extraordinary." Conversely, people often object to the use of a simple, inexpensive measure to maintain life, e.g. the feeding tube. Furthermore, many treatments can be considered "life-sustaining," although their withdrawal may not result in immediate death. The real reasons people reject certain treatments may be the circumstance surrounding their use. A respirator may be acceptable during treatment for pneumonia, but not necessarily after two weeks of observation following a cardiac arrest. A feeding tube may be appropriate for a patient recovering from major surgery, but not necessarily for a patient wasting away from terminal cancer.
There are basically two broad reasons to refuse a certain treatment. The first is that the benefit of the treatment is not great enough to justify its risk or discomfort. This is the basis for most treatment decisions, and involves the individual attitudes each patient will bring to the decision. Some people will endure unpleasant and risky treatments for a chance to live longer; others prefer a more comfortable, shorter life, using the least possible medical intervention.
The second reason to refuse medical treatment is that it will prolong life under intolerable conditions. Even an easily tolerated treatment with minimal discomfort might be unacceptable if it prolongs life in the face of unwanted circumstances. A feeding tube may be simple, safe, comfortable, and highly effective in preventing death from starvation and dehydration. Nevertheless, some may not want it used if another irreversible condition exists (for example, a persistent vegetative state). Viewing treatments in this light can result in totally different decisions. A treatment that easily passes the risk/benefit or burden/benefit test may still be refused because it only prolongs a life that is hopelessly dismal.
Some treatment decisions fit easily into one of the frameworks noted above but others will be difficult to categorize. Antibiotics for pneumonia may be such an example. Depending on the circumstance, treatment might entail tubes placed in the neck or chest to deliver the drug, with only a fair chance of success. Or, it might simply be an easily-swallowed pill with a high likelihood of success. Burden/benefit decision-making could lead to different choices in these cases.
Some people simply wish to avoid uncomfortable treatments that have a low likelihood of success. Others are adamant that they want nothing that will prolong their lives under certain circumstances. Under the second approach, no antibiotic, no matter how simple, would be permitted, since it would likely prolong life. This is all complicated by a third possibility: the antibiotic might be viewed as a "comfort measure" since it will allow easier breathing in an illness that would otherwise cause shortness of breath.
One specific type of treatment deserves special comment. If you are quite certain that there are some situations in which you would not want intravenous or feeding tubes, you should be quite explicit. For a person who (for whatever reason) cannot eat and drink, death is certain without some other means of delivering nutrients and fluids. Authorities differ on whether such a death is unpleasant, but we know that death will be the end result. For this reason, physicians and hospitals are very reluctant to withhold these therapies unless the withholding is clearly based on an informed choice made by the patient when he or she had the capacity to decide.
People see these treatments differently. Some view tube feedings as "eating" and quite "ordinary." More and more people, however, are beginning to view tube feedings as being subject to the same scrutiny as other medical treatment. It is your business to decide how you feel about tube feedings. But if you wish to refuse this treatment under certain circumstances, you should make your views quite clear.
Such decisions are complex and take into account many factors, including the probability of success and of side effects (nothing in medicine is 100% certain). These decisions are often best made in conjunction with a clear-headed friend or family member who can help you consider the issues involved.
New York law (and the law of most states) requires that there be evidence of your desires when a health care decision is to be made for you. For this reason, you should share your concerns about health care with your family, your religious advisor, your attorney, your friends, and your physician so that as many people as possible will understand your feelings.
It is important that you discuss your health care desires with your physician. He or she is likely to be the one caring for you when your instructions become relevant and is much more likely to honor requests that have been communicated directly. Furthermore, your physician can help you phrase your requests in a way that makes sense to physicians and can answer any questions you may have. Finally, your physician can point out any illogical or inconsistent features of your requests. Sometimes refusing one kind of treatment makes it illogical to expect to receive another kind of treatment. Your physician can smooth out some of these "rough edges" and help make a consistent and coherent directive. He or she will also tell you if there are aspects of your requests that he or she cannot honor because of personal, moral, or professional constraints.
Despite your best efforts to plan for all eventualities in a health care declaration, actual events may not "fit" your directives. It is therefore important that you discuss your desires with family and friends. They can then often help clarify your directives on the basis of recollections of specific discussions under specific circumstances. In addition, if you have discussed your wishes with a number of people, it is more likely that those wishes will be honored.
Another benefit of discussion with family members is the avoidance of unpleasant scenes and confrontations when you are incapacitated. While family members may have little legal authority to make decisions for incapacitated patients, they often feel they have moral authority. They may be confused by statements not previously shared with them, and may even try to contest your wishes legally if they feel your choices are not in your "best interest."
New York State law now authorizes an individual to appoint an agent to make health care decisions for him or her when he or she has been determined to be incapable of making such decisions. The law puts primary emphasis on the patient's previously expressed wishes, but except for a decision to withdraw or withhold food and water, also allows the agent to make decisions in the patient's "best interest" if an issue arises that the patient never discussed. Therefore, it will be essential that you discuss your wishes with all persons whom you name as your agent.
The appointment of a health care agent can be made on a separate form created for that purpose alone or as part of a health care declaration. This appointment is not the same as the appointment of an agent for legal matters (a "power of attorney"), even though the same person may be appointed for both, and cannot be made on the same form.
The only other health care situation in which there are specific legal guidelines in New York is the area of "Do Not Resuscitate" (DNR) orders. These orders apply only to cardiopulmonary resuscitation and there are specific rules concerning how they are to be written and who may authorize them. Briefly, if while you are in a hospital your heart stops beating and you stop breathing, a team will immediately attempt to restore normal heartbeat (resuscitation) and breathing. This attempt will happen automatically unless such treatment is refused in advance. The issuance of a DNR order is the method prescribed by law for such a refusal.
A copy of the Health Department's pamphlet on DNR orders is available on request. The relevant issue with respect to the health care declaration is that resuscitation (like any other treatment) can be refused in advance and can form a part of such a declaration. The refusal can be unconditional, or can be specified as becoming effective only under certain circumstances. Your health care agent will have the right to make DNR decisions for you when you are no longer able to make them yourself.
For further information or assistance in preparing a health care declaration or appointing a health care agent you should consult your physician or attorney, or you may call either author of this pamphlet. Although there is no required form for either a health care declaration or the appointment of an agent, it is important that each form be carefully prepared so it accurately reflects your desires and that it is signed (and witnessed) in accordance with the requirements of the law.