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PLANNING AHEAD WITH ADVANCE DIRECTIVES: STAYING IN CONTROL

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PLANNING AHEAD IS ESSENTIAL

Almost all the planning and legal aspects of medical care at the end of life have one underlying caveat: they must be done early if confusion, failure, and disappointment are to be avoided. Young persons often have a sense of invincibility that makes advance directives seem unimportant, and their usually good health provides no impetus. Older people may simply not get around to it or not realize the importance of such planning. However, regardless of one’s age or state of health, advance planning is essential. When the unforeseen medical problem presents itself, everything will proceed more smoothly and with less angst when plans have been made ahead of time.


ADVANCE DIRECTIVES USUALLY AVOID THE NEED FOR COURTS TO INTERVENE

An advance directive is a written statement of how you wish to be cared for at the end of life. It is executed while you are competent and able to participate in medical decision-making. Written advance directives are the best and easiest means of avoiding situations in which it is not clear what you would have wanted, and they are extremely important in avoiding court-imposed directives that may go against your wishes. They should be executed by all adults who are intellectually competent to do so.

A majority of all the controversial end-of-life care problems that lead to court action occur when the patient is no longer able to make medical decisions and has not left clear-cut written evidence as to what he or she would have wanted. The courts generally do not wish to be involved in mandating what is to be done in such situations, but they are forced to be involved when there is family dissension and a lack of documented evidence of the patient’s wishes. The Quinlan, Brody, and Schiavo cases are important court decisions in the history of end-of-life case law, but they (along with many other cases) never would have been necessary if proper advance directives had been in place.

The cases that appear on the front pages of newspapers are often about young people in desperate situations who cannot speak for themselves and have left no written evidence about their wishes for medical care. Every adult over the age of eighteen should have a properly executed advance directive. Older persons are more interested in advance directives since this age group has begun to contemplate the likelihood of disease and death in the relatively near future, but the young tend to feel that medical calamity will not befall them and do not plan ahead—sometimes with very bad consequences. Recently, I was giving a talk on end-of-life issues to a class of about seventy college students, and I asked for a show of hands by all who had executed an advance directive. Not one student raised a hand! That is a serious problem.


TYPES OF ADVANCE DIRECTIVES

There are several kinds of advance directives.


The Living Will

A living will is the oldest and simplest advance directive. A written statement by you, outlining what you wish for end-of-life care and procedures, it may or may not be legally binding, depending on the state you’re in. See Appendix E for a typical living will. It does not require a lawyer to execute and needs only a witness to one’s signature. Even in states where it is not binding, the living will remains a very important document and is usually given great weight by those persons (family or physician) who are making decisions for you when you no longer can speak for yourself. We all should have a living will even when more binding and complicated advance directives are implemented. A living will can complement the medical proxy document (see the next section) in that it provides more detailed instructions to the person appointed as proxy and helps guide decisions.


The Medical Proxy Document (Durable Power of Attorney for Health Care Decisions)

The medical proxy is a more powerful, legal form of advance directive that lawyers may term a durable power of attorney for medical affairs. With this document, you delegate to a legally appointed agent (proxy) the power to make health care decisions when you are no longer able to do so. The directive takes effect only when and if you lose the necessary mental competence to participate in medical decision making.

The medical proxy represents a very important advance in the history of end-of-life rights because it gives to a duly appointed agent the right to speak for you in medical decision making in the same way and with the same authority as you would have were you still competent. For this reason, it is vastly more powerful legally than a living will. All states now have some form of medical proxy laws, and every adult should execute one now— not waiting until sudden illness or incapacity strikes. A typical medical proxy document is found in Appendix F. As with the living will, it does not require a lawyer, only two witnesses.

There is some debate about how specifically the document should instruct the agent. Some say it is better to give a broad and general delegation of power for the agent to act in ways that are in accordance with your wishes as understood by the agent— not specifying details of what is wanted or not wanted, but rather relying on the fact that you have discussed with your agent the sort of care you desire. We cannot predict all eventualities, and it is better to have the proxy instructed in general terms. In this scenario, the agent decides what is best for you based on his or her knowledge of the sort of care you wish, and there is no detailed written evidence of your wishes.

Others, however, want specificity about wishes in an attachment to the proxy document. Proxy forms have a place in which such further stipulations may be added. I've seen in my years of practice many things I do or do not want for myself and have assembled these into an addendum to my own personal medical proxy document (see Appendix F). This optional addendum of wishes can also be used as a stand-alone memorandum to your agent, quite apart from the proxy document. The latter course is perhaps best: Your agent has the power and knows what you want. If you elect to make this additional statement (attached to the proxy or not), this does not restrict the broad authority the agent has to make decisions in unanticipated situations. Specifying details about any given situation that does not imply the agent should act or not act in a certain way about issues not addressed specifically. You do not have to cover all eventualities in order to empower your agent to act on any problem that might arise.

Medical proxy laws now exist in all fifty states. There is variation in these laws, but the basic principles are the same. A medical proxy document executed in one state will be honored in other states.


Do-Not-Resuscitate Orders

Do-not-resuscitate (DNR) orders are binding documents that instruct emergency personnel (emergency medical technicians, ambulance crews, fire departments, emergency room personnel, and staff personnel of a nursing home or hospital—anyone responding to a call for emergency help) not to undertake resuscitative measures in an attempt to revive you when a sudden collapse has occurred. Such a sudden collapse might be a stroke with loss of consciousness, acute fall in blood pressure, or cessation of heartbeat or breathing. These DNR orders usually require that your condition is terminal with death expected within six months, and there are state health department regulations about what is necessary to put these orders into effect. These requirements may vary according to whether you are in a home situation or in a hospital. They are all time-limited orders that must be renewed within a certain period.

The purpose of these orders is to allow those caring for you to call for emergency help to deal with a new situation or need for transfer to a health care facility for a different type of care— without at the same time risking the aggressive application of resuscitative measures that all medical emergency personnel are bound to undertake when the end-of-life situation is not documented in writing. The DNR is not put in place until you are facing the end of life in the near future, and emergency support and resuscitation are unwanted and inappropriate.

Documentation of DNR orders is done in the medical records at home, nursing homes, and hospitals utilizing special state-approved forms that emergency personnel must see before agreeing not to resuscitate. The form is completed by your physician at your request. A verbal request to emergency personnel for no resuscitation by family or caregiver is not sufficient. A bracelet or necklace indicating the presence of such a DNR order should be used, or the DNR order should be posted at the head of your bed.

It should be remembered that one of the best ways (in addition to DNR orders) to avoid unwanted resuscitative measures for a dying patient at home is not to call for help from 911. These calls automatically trigger emergency teams with their strict rules of engagement, whereas a call to the physician’s office instead can initiate comfort measures upon which there is prior agreement. This is another reason for discussing all this with your physician and enlisting his or her cooperation. Almost all calls for end-of-life assistance should be done through the physician’s office. This includes the situation in which the family thinks the patient has died. If your own physician is off duty, the call will go most likely to a designated covering physician who may be unfamiliar with the situation, but even so, this person is far easier to convince that no aggressive treatment is indicated than is an emergency ambulance crew. In any event, you will need to rely on written evidence for no aggressive intervention (a copy of the DNR order, living will, and/or proxy document— all of which should be readily at hand).


Advance Directives and Dementia: A Special Dilemma

Alzheimer’s disease and certain other dementias, as we saw in chapter Chapter 11, pose a particular problem in that it is very difficult to create ahead of time an advance directive that meets the principal wish that most of us have, namely, that we simply do not wish to live in a state of dementia and would prefer death. How to deal with this issue under present laws is very difficult, but I have made some proposals that could partially begin to meet this dilemma. See Appendix G.


REMINDERS ABOUT ADVANCE DIRECTIVES


WHAT CAN FAMILIES DO WHEN THE PATIENT IS
INCAPABLE OF MEDICAL DECISION MAKING AND
AN ADVANCE DIRECTIVE DOES NOT EXIST?

There is not a problem if the diagnosis and prognosis are clear and if the family and physician agree upon a course of action. Decisions in these situations are made by the concerned parties. They virtually never go to court.

If there are questions about diagnosis and prognosis or if there is disagreement among caregivers and decision makers as to what should be done, the local probate court may be consulted for a ruling. This is usually relatively easy to do legally, and such decisions are generally handled on a fast track. However, it requires the assistance of an attorney.

Application can also be made to the court for a legal guardianship in situations that involve prolonged care and an unclear future. This court assistance is also easily obtained through probate court and is usually not a prolonged process. The court will delegate decision-making authority to an appropriate family member or friend or, if there is no obvious choice, a disinterested party selected by the court.

Although probate courts generally act with dispatch, sometimes the legal aspects of care for a patient who cannot participate in medical decision making become very complicated and prolonged. The Terri Schiavo case in Florida, which played out so prominently in the courts and the newspapers for some years until her death in 2005, is an example of this. In that case, the husband was the closest of kin with the greatest claim to speak for his wife, who was in a persistent vegetative state. However, the problem arose from the fact that Schiavo’s parents’ disagreement with the course of action asked for by her husband was so tenacious and stubborn that numerous appeals kept coming up in the courts, and the usual course of events was frustrated. In most instances, properly executed advance directives avoid the sort of fiasco seen in the Schiavo case.


THE ESSENTIALS FOR STAYING IN CONTROL

Most of the time you can stay in control at the turning points of life, but determined action is required. The following are the essentials needed if things are to go the way you want them to.