Fall-Winter 2003: A Matter of Life and Death

by Jean T.D. Bandler

Everyone wants to have “a good life”. Definitions will vary, with some hoping for fame, success, and money and others stressing personal ties, civic contributions, and good deeds. Most wish for health, happiness, and productive work. Everyone also hopes for “a good death”, and here the definitions are remarkably similar. “A good death” is one that is faced with bravery and yet is without intolerable pain, without helpless humiliation, and without dependence on others. Such a death requires courage and foresight in life. Planning ahead is clearly essential for the terminally ill and elderly; it is equally important for everyone at any age or state of health, since severe accident, disease, and calamity can happen at any time. Verbal comments, plans to fill out a living will, good intentions to write it all down have little standing or worth.

A past article ( FCIS Newsletter, Fall-Winter, 1999) reported on organizations that are particularly helpful for patients at the end of life: Hospice, which focuses on comfort care, Compassion in Dying, an advocacy and information group, and The Hemlock Society, which provides information and advice. (FCA of CT has some extra copies should you wish to review.)

This article focuses on the importance of making specific health decisions now and details two important forms: 1)The Advanced Medical Directives includes a Living Will and Attorney-in-fact- for Health Care and 2)The Medical Directive. These forms let you state your wishes on the kind of life and the kind of death you desire when ill. At the least, everyone should complete the Advanced Directives for Connecticut; even better, everyone should also review and complete the more detailed Medical Directive. Both are essential for planning ahead on the kind of life and death wanted.

Advanced Directives

The simplest and most universal form is called the Advance Directives. Although there are some variations by State, the forms are fairly standardized and relatively easy to fill out.  The Connecticut Advanced Directive has three parts:

  1. The Health Care Instructions, or living will, a four page form to give your wishes on providing or withholding three specific life support systems  (CPR, artificial respiration, and artificial nutrition and hydration) if you are permanently unconscious or terminally ill. There is also space for personal instructions, to request sufficient pain medication to be physically comfortable. A health care agent and an alternate are designated and it is recommended that these be trusted family members or friends; the health care agent is the person who will talk with the doctor to try to ensure that one’s wishes are carried out. There is also room to name a “conservator of the person”, to make arrangements for caring for the body after death. Two witnesses should sign the form.
  2. The Attorney in fact for Health care, rarely a lawyer, appoints a trusted person, person, and an alternate, who will make decisions other than about life support when one is unconscious. These decisions might be consenting, refusing or withdrawing all other medical treatments except life support, nutrition and hydration, maintenance of physical comfort. This form must be notarized. It is suggested that the Attorney in fact be the same person chosen as the Health Care Agent.
  3. The final form is the Witness Affidavit form, an optional 2 page form for 2 witnesses, which should be notarized.

While these are important, challenging life and death decisions, the form is simple, easy to fill out, and can be altered if your views change. There is no need to consult an attorney, but a notary public is required for the Attorney in fact and the witness forms. We recommend that you carefully discuss your wishes with your doctor and your family, make plenty of copies for their files, for your agent/ attorney in fact, and for yourself, with one copy stored in a discussed,  easily accessible and safe, place; a bank vault, back of a file, or a desk drawer are not easy to locate. (FCA suggests using the kitchen freezer for the Before I Go packet, which includes the Advance Directives, and affixing the freezer magnet on the door!)

Medical Directives:

The eight page Medical Directive, is a far more complex and nuanced form.  At first glance, some may be intimidated by its scope and detail, but these are complicated, multiple decisions. and should be thought through with care. Developed by Drs. Ezekiel and Linda Emanuel, both physicians and medical ethicists, the detail of the Medical Directive helps to document one’s general goals and specific wishes about possible medical treatments in a range of medical situations. Similar to the Advance Directives, there is room for medical donations, naming proxy decision makers and witnesses and for a personal statement, which asks some  prompting questions about the medical conditions-intractable pain, irreversible mental damage, inability to share love, dependence-that one regards as intolerable and why. Also similar to the Advance Directives, the Medical Directive comes into effect when one is unconscious, or unable to communicate wishes; it explicitly includes “incompetence” and brain damage.

Most of the form is multiple choice with a range of medical situations, a continuum of general goals for each situation, and then a check list of specific options on a list of medical interventions. The six situations range from being in a coma without hope of regaining awareness, being in a coma and near death with an uncertain chance of regaining mental function, having a terminal illness with only weeks to live and only occasionally awake; having irreversible brain damage or disease so that thinking and feeling is impossible; and finally, two situations one fills out oneself, having a condition likely in view of current medical situation, and contracting an life-threatening but reversible illness. For each situation, the five general goals covers a continuum of prolonging life and treating everything; attempting a cure with frequent revaluation; using less invasive interventions, providing only comfort care; or using other goals that you specify. In each situation, nine treatment interventions are listed; this list covers all types of cardiopulmonary resuscitation; major surgery, mechanical breathing by machine or tube, dialysis, blood transfusion, artificial nutrition and hydration, simple diagnostic tests, antibiotics, and pain medication even if it shortens life. In each situation for each intervention, one must decide between four different options: if treatment is wanted, if it should be tried but stopped if not clear improvement; if undecided, or if not wanted.

Clearly this is a complex form, spelling out a range of six medical situations, five overarching goals, nine treatment interventions, and four possible wishes. Some may worry that this is too complicated and will discourage people from using the form. However, it is the specificity and comprehensiveness of the form that makes it most useful to the patient and to the appointed health agent. The choices are not easy — if I were comatose, would I want electric shock to keep my heart going? If I were in the last stages of Alzheimer’s with a terminal illness would I want a gall bladder operation? If I had terminal cancer and was not coherent, is tube feeding desired? Difficult as these decisions are, it is far better to make them for oneself while one can, than leave them to last minute struggles by family or friends. The Medical Directive allows one to become informed, to make specific choices, and to help control one’s own health care.

We urge everyone to use the Advanced Health Care Directives for Connecticut to make general choices and the Medical Directive for specific instructions. FCA of CT has the forms for both directives. Thanks to a generous discount by Drs. Emanuel, we can provide the Medical Directive below cost, but a contribution to cover its purchase, shipping and handling  is welcome. Please contribute if you can, but if you cannot, please ask for the forms anyhow. These forms will help you to determine the kind of life and death you wish.