• By: Thomas L. Petty, M.D.
  • "The days of our lives should be three score and ten years, and if, by strength, they may be four score years . . ." and then the spirit takes wings and flies away. (Psalms 90:1-10)"
  • I am writing this article for a number of compelling reasons. Compelling to me at least, and probably to others. It is the issue of end-of-life care and how it is terribly mishandled so often. I write this from the perspective of a pulmonologist who has practiced critical care medicine and ongoing care, including terminal care, for more than four decades. I am also chairman of the ethics committee of a Denver hospital. Medical ethics is one of my most important current interests.

    Everyone does not get to live 70 or more years, now the expected lifetime of humans in this country. Trauma and disease may dramatically shorten life. Life ends when there is no meaningful interaction between the patient, the family and the environment and after it is certain that basic mental functions will not return. It is not difficult to know when the fact of cognitive life has ended. The "examples" of recovery from longstanding unconsciousness all have recognizable medical explanations. They are not relevant to well publicized, tragic cases of the past, such as Karen Quinlan and Nancy Cruzan. These disasters, celebrated in the media, continue to haunt me, as does the unbelievable and totally mismanaged (in my opinion) case in Florida of vegetative patient Terri Schiavo. But these are just the most blatant examples of what happens when end-of-life discussions and planning are not done, or done haphazardly and without considering the adverse effects on the dignity of the dying patient.

    We all well understand that we are guaranteed to die, at some time of our life. "Nobody ever got off this planet alive" is a quote from Woody Allen {Of course, man went to the moon and safely returned. Someday man will visit other planets and will return.} He also said, "I don't mind dying, I just don't want to be there when it happens." In my discussions about end-of-life matters with my patients, I rarely take a lighthearted approach. Dying is a serious matter that is the natural end of living. I do encourage my patients that "we will postpone death as long as is reasonable and possible."

    All patients should have discussions with their doctors, hopefully at a time when they are still healthy, about what is commonly called, "end of life decisions." I would prefer to term this "decisions at a time of transition." This has religious connotations, which can be individually interpreted. Having a clear understanding about what YOU want done when facing a catastrophic situation, such as a persistent vegetative state is of key importance. Everyone should have a recording of personal wishes which are well documented in the form of a "Living Will," or "Durable Power of Attorney." These two documents provide for surrogate decision making in times of crisis. They do not and should not require a lawyer. As a matter of fact, end of life situations are only made worse by lawyers, and usually completely botched by the courts, that have no training or experience to make end-of-life decisions. Most lawyers understand this and most courts would like to stay out of the matter of end-of-life decisions. But when families bring suits, the court has no choice but to get involved. DO NOT GET LEGAL ABOUT ANYTHING AS IMPORTANT AS END OF LIFE MATTERS.

    The principles involved are really quite simple. The public expects and is entitled to the best life supporting care as long as a meaningful recovery is possible. Beneficence is a long tradition of medicine as cited in the Hippocratic Oath " . . .I will come for the benefit of the sick." The Florence Nightingale pledge includes the phrase " . . . and devote myself to the welfare of those committed to my care." The autonomy of the individual is guaranteed by fundamental principles which include the United State Constitution, which guarantees the right to privacy and the common law which determines the right to bodily self determination.

    Informed consent is another fundamental principle. Informed consent means truth telling about any and all possibilities that may occur during medical care. Informed consent is implicit in the living will and durable power of attorney. The patient consents to be treated or not and the patient or a surrogate can demand that life support be withdrawn. The President's Commission has clearly stated that there is no moral, ethical, or legal different between withholding treatment and withdrawing them in hopeless situations.

    There is another principle that is commonly ignored. This is the principle of "Common Sense." But, "common sense is not common . . ." Voltaire.

    Finally, the principle of the patient's best interest is intertwined in all of the above. Is it care or torture to continue life support for a patient in a persistent vegetative state with feeding tube or a respirator?

    Who should be the decision maker for an unconscious or vegetative patient? It is only the surrogate decision maker, which can be a spouse, a sibling, a child over age 18, a parent, or a friend. But NOT a hostile family or a court. When a spouse makes a surrogate decision that is directed by his loved one, the family has no standing, no moral or legal right to interfere. They have no responsibility at all. Yet they sometimes find lawyers to get them to the courthouse and here is where the whole thing fails. Perverted special interest groups often put pressure and even a medically unqualified and misinformed governor can make the wrong decision, give the wrong order. This creates chaos, causes harm and promotes suffering.

    The day will come when we all must face our death. Very few of us "want to die." Most of us are frightened by the concept of our death. We want to know: How will it happen? Will I suffer? Will I suffocate? Will I have uncontrolled anxiety? Will I writhe in pain? Will I agonize? Or, is it possible to face death with some control over these fears?

    A frequent question for physicians treating patients with severe COPD is "Doc, how long do I have to live?" The honest response is "I don't know." Two patients with COPD may have identical seriousness of illness medically, yet one lives several months, even years longer than the other does. It is difficult to explain why and how the human spirit wants to keep on living in some cases, far beyond what is "usual."

    All patients should know there are many medications that can control pain and anxiety. Patients do not need to have "everything done" to provide for their comfort and quality of life. A breathing machine may not be needed to stop the feeling of suffocation with a severe attack of COPD. Appropriate use of narcotics and sedatives can control shortness of breath and pain. The dying body prepares for death by gradually shutting down organ system functions, such as the kidneys and digestive tract. This does not cause hunger or thirst. It brings nature's relief. It is important for all to resolve that death is not the enemy. Patients fear loneliness, pain and other suffering but not death itself. Death is a natural process, unless interference extends death and prevents its spiritual meaning.

    For patients with severe COPD, there may come a time when quality of life is so poor, breathlessness becomes intolerable, the desire to take food and drink leaves, and life seems to have no purpose. At this point, the patient's emotional and physical comfort must come first. The goal is no longer to "grind-it-out," but to find peace and comfort within one's self, with family and with friends. This acceptance and use of comfort measures does not mean death is immediate. It means the patient has taken control. COPD no longer controls their daily life and routine.

    Recently the Five Wishes Program, Aging with Dignity (The Robert Wood Johnson Foundation, Princeton, New Jersey) has been widely promoted and acclaimed. The Five Wishes Program embodies and clarifies or expands on the advance directive that can be used to guide surrogate decision making. Details follow:
  • Five Wishes:
  • Because there are many aspects of life that are out of patients' control, especially when serious illness is present, the Five Wishes booklet was created as an easy-to-complete form that allows the patient to say exactly what he or she wants. The beauty of the document is its simplicity combined with sensitivity and specificity. It was written with the help of The American Bar Association's Commission on the Legal Problems of the Elderly, and the nation's leading experts in end-of-life care. Five Wishes is for anyone 18 or older. Because it works so well, lawyers, doctors, hospital, hospices, religious institutions, employers, and retiree groups are handing out this document.

    Wish 1:
    The person I want to make health care decisions for me when I can't make them for myself.
    This is selecting a durable medical power of attorney. An explicit discussion of whom the patient should select and the specific things the patient wants his or her agent to do are listed.

    Wish 2:
    My wish for the kind of medical treatment I want or don't want.
    This is equivalent to a combination of the classic "living will" and the "advance resuscitation directive." Included in this section is a discussion of "what life-support means to me." It explains what Do Not Resuscitate (DNR) means in simple but explicit lay terms. Specifics of what the patient wants done in the following settings are listed:

    1. Close to death
    2. In a coma and not expected to wake up or recover
    3. Permanent and severe brain damage and not expected to recover

    Wish 3:
    My wish for how comfortable I want to be.
    This specifically requests enough pain medicine to provide comfort, a desire for hands-on care such as bathing, massages; for soft comforting music to be played and for spiritual needs to be fulfilled.

    Wish 4:
    My wish for how I want people to treat me.
    The selections under this wish have to do with personal visitation, attitudes the patient wants conveyed at the bedside, the desire for prayer and spiritual support and a clarification of where the patient wants to die (e.g., home).

    Wish 5:
    My wish for what I want my loved ones to know.
    A wonderful selection of very personal requests is provided. There may be statements about how much someone is loved, a request for forgiveness, a request for family and friends to make peace and bond during the patient's dying process, and a request for burial vs. cremation.
    For many patients, when the decision not to continue living has been reached, support from hospice and other homecare agencies may be welcomed. Patients have the choice of spending their final days at home or in a facility operated by hospice. Hospice workers offer quality of life, compassion and dignity. Physical, emotional and spiritual support is provided. Control is returned to the patient.
    The use of advanced directives clarifies what patients want regarding their medical care. Their purpose is to make certain each individual's desires and wishes are followed. Advanced directives do not remove hope or the desire for life. They simply give patients control, freedom, comfort and peace.

    "The tragedy of life is not that it ends so soon,
    but that we wait so long to begin it."
    W. M. Lewis

  • Thank you, Dr. Petty, for this thought provoking article.
  • If you would like more information on this subject, or a copy of Five Wishes, go to the website of http://www.agingwithdignity.org. You may also write to:

    Aging with Dignity, PO Box 1661
    Tallahassee, FL 32302-1661
    Phone: (850) 681-2010
    Fax: (850) 681-2481.

    Five Wishes is $5 for one copy, or 25/$1 each.

    The Partnership for Caring is another site where you can get a free download of the Advanced Directive specific to the laws of your state. Their website is at http://www.partnershipforcaring.org/HomePage/. If you don't have Internet access, you can obtain a printed set of their documents for $10.00 (plus tax where applicable: $.83 for New York State residents and $.58 for Washington, DC residents).

    Call 1-800-989-9455 to order by credit card, or send a check or money order to:
    Partnership for Caring Publications 1620 Eye Street, NW, Suite #202
    Washington, DC 20006
    Be Sure To Specify Your State.