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Health Care and End-of-Life Planning Is Difficult, Yet Necessary
Jan L. Warner & Jan Collins

Question: After losing a number of family members to long-term illnesses where end-of-life planning had not been done, my husband and I (both of us are in our late 60's) decided to try to spare each other and our children as much agony as possible. We got copies of living will forms from our local hospital, but have had very little luck getting anyone to explain the effect of these forms to us. We tried to call the hospital staff, but continued to get voicemail, and no one called us back. We contacted our lawyer, but he told us that he knew very little about these matters and referred us to our physician who was too busy to talk to us at length about our concerns. My husband is thinking about canceling his surgery. Do you have information that you could send us or at least put us on the right track?

Answer: Public interest in "right to die" issues was heightened in 1990 after the United States Supreme Court decision in the Nancy Cruzan case which affirmed an individual's rights to make end-of-life decisions in advance of the event. Rather than setting a national standard, however, the Supreme Court left the states with the flexibility of establishing the parameters within which agents are able to make decision these decisions on behalf of an incompetent patient.

The health care decision-making process, of which end-of-life planning is a part, involves a number of complex issues which can affect not only the patient, but also family members who are oftentimes unaware that a problem even exists until there are few, if any, options available.

In making end-of-life and other health care decisions, you should first answer three important questions: (1) If I am in a life and death situation, do I want medical treatment to be refused or withdrawn, and if so, under what circumstances? (2) How should medical decisions that do not involve life and death issues be handled if I am unable to express my wishes? (3) Which person is best suited to make these decisions should I be unable to do so?

In order to allow you to deal with end-of-life and health care planning issues, the laws of each state authorize written "advance directives" by which you can give advance instructions to health care providers and agents about withholding or withdrawing life-sustaining treatment at or near the end of life should you not be able to make your own decision. "Living wills" are a type of "advance directive" which apply when you are incapacitated and either (1) have a "terminal condition" that is incurable and will result in your death in a reasonably short time without the use of life-sustaining procedures, or (2) are permanently unconscious -- that is, is in a persistently vegetative state with no brain waves.

It is important to remember that (1) so long as your are competent, you will make your own health care decisions, (2) by making an end-of-life decision, you will not be discontinuing pain management and comfort care, and (3) advance directives become effective only if you are no longer able to make or express your decisions.

While the living will has received most of the publicity, a more flexible type of advance directive is the "durable health care power of attorney" through which state law allows you to authorize an agent to not only deal with life-sustaining medical treatment, but also to act on other than end-of-life medical treatment if you are unable to make your own decisions.

Should you become incapacitated, need a medical decision made, and have no advance directive, most states have enacted laws which arbitrarily list those who will have priority in making your decisions for you; however, when dealing with end-of-life matters in these circumstances, health care providers normally will not take the risk of terminating life support without a court order which causes greater expense and hardship to the family.

Under a federal law called the Patient self-determination Act, Congress has required hospitals and other health care providers which participate in the Medicare and Medicaid programs to educate the public about advance directives and to maintain patient records; however, the care delivered to all patients -- whether they have advance directives or not -- is the same.

We are disappointed that your doctor does not have time to discuss these very important issues with you and feel that you should consider seeking another physician who is more in tune with the needs of his or her patients. And lastly, in order to make sure that your documents are signed and witnesses appropriately before unrelated witnesses or before a notary public, depending on where you live, we suggest that you consult your lawyer about proper execution and consider signing in your attorney's office.

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