February 21, 2000
Whose End of Life Is It, Anyway?
When a living will is not enoughBy Rhonda B. White, R.N., M.S.N.
As a critical care and emergency room nurse, I've watched many people die. It's never easy. The most tragic cases occur, however, when a patient's family is faced with the question of whether to use artificial life support. Even when the patient has made his or her wishes clear with an advance directive -- a document that gives instructions for care in the event the patient is incapacitated -- these wishes may be ignored.
One night, an elderly man was rushed to our emergency room after suffering a stroke. He was unable to breathe on his own, so the emergency medical technicians (EMTs) assisted his respiration throughout the drive. Under normal circumstances, the efforts of the EMTs to keep this man alive would have made him and his family very grateful. But the patient, whom I'll call M., had taken the time to prepare a living will. It stated that because of his ill health, he did not want heroic measures used to sustain his life. Although some states are implementing policies to honor "do not resuscitate" (DNR) orders, EMTs are generally required to resuscitate and stabilize patients until they are brought safely to a hospital.
Once M. reached the hospital, he was placed on a ventilator. Despite M.'s stated wishes, when his son became the decision maker, he could not bring himself to have his father's breathing tube removed. M. was kept alive for four months, never waking and never taking a breath without the help of the ventilator. He finally passed away after we could no longer find a vein in which to inject the medication that kept his heart beating.
Why weren't M.'s wishes followed at the end of his long life? If he had known more about the advance directives described below, he may have chosen to combine his living will with a medical power of attorney.
A living will is a simple document that allows you to address the issues of artificial life support, life-prolonging feedings, and comfort care. Living wills are recognized in all 50 states and in Washington, D.C. While this kind of document is easy to execute (most forms require only the signatures of the party concerned, a witness, and a notary public), health care personnel often ignore them. Why? Living wills are not standardized, so they often fail to address all the issues involved in a medical emergency and almost always require interpretation. In addition, many of the medical decisions that need to be made occur outside the realm of urgent care. The American Bar Association's Commission on Legal Problems for the Elderly found that "most [livings wills] provide instructions that apply only if the individual is in a terminal condition or permanently unconscious, yet the majority of health care decisions that need to be made ... concern questions about day-to-day care, placement options, and treatment options short of 'pulling the plug.'"
Medical power of attorney
Living wills work well only when all of the family members are clearly aware of the wishes of their loved one and are determined to follow those wishes. When families are in disagreement, or if certain members have indicated a refusal to cooperate with a living will, then a more detailed document called a medical power of attorney might be needed. This document allows you to appoint someone you trust, even someone outside the family, to make decisions about your medical care when you are unable to make those decisions.
Steven C. DeGuire, Ph.D., the director of psychology at Heather Hill Hospital, has worked with dying patients and their families for many years. Advance directives, he believes, can preserve family unity and the dignity of the patient -- and the more detailed they are, the better. "It is very important to make your wishes known to your family regarding end-of-life issues," DeGuire explains. "I see family members battle over what they think their loved one would have wanted. This can lead to lifelong guilt and resentment."
When both a living will and a medical power of attorney are in place, the wishes of the dying can be respected without guilt, panic, or anger among family members. Then health care professionals can help provide a painless death that everyone can accept.
SIDEBAR: Critical-Care Procedures You Should Know About
Many people have never been in a critical-care unit at a hospital and have only a vague idea of the extent of lifesaving technology available. With the right combination of drugs, nutrition, and technology, life can be sustained for years. An advance directive can help you decide which medical techniques you want used -- and which you want to rule out -- when certain emergencies arise.
- Cardiac arrest. Emergency protocols include a combination of electric shocks, cardio-active drugs, and cardiopulmonary resuscitation (CPR).
- Respiratory arrest. During cardiac arrest, a person may be unable to breathe and therefore be placed on a ventilator. Ventilation is extremely uncomfortable for the patient, and there is a chance the patient will never breathe without the machine again.
- Feeding and hydration. There are two ways to feed unconscious patients: tube feeding, using a tube that runs through the nose and into the stomach; and parenteral feeding, in which an intravenous solution is administered through veins in the arm, neck, or chest.
- Pain medication. Discomfort caused by the ventilator, or muscle tension and atrophy from immobilization, may require that pain medication be administered.
- Dialysis. Very ill patients may experience kidney failure, making dialysis a necessity, perhaps permanently. During dialysis, the patient's blood is filtered through a machine, cleaned, and replaced. The frequency and duration of treatments varies depending on the patient's needs.
DNR Denied, by Dr. Kevin Shushtari
For information on end-of-life care, visit The Growth House.
For information on living wills and medical power of attorney, visit The American Bar Association.
To download legal forms for your state, visit Choices in Dying.
To read about doctors' views on DNR orders, visit The American Medical Association.
For information on CPR, visit The American Heart Association.
For information on pain control, visit The Roxane Pain Institute.
For information on dialysis, visit The Nephron Information Center.