Most of us will face some form of high-tech dying, and we need to be ready for it. About three quarters of Americans die in hospitals or medical facilities where overly aggressive treatment is common, less than half who request “do not resuscitate” orders get them, a majority of dying patients experience severe, undertreated pain and nearly 40 percent spend at least 10 days in an intensive-care unit. We all want to live as long as is reasonable, but avoiding the extremes of modern dying requires serious forethought.
Despite the dismal statistics, there are steps you can take to avoid an artificially prolonged death. First, issue an advance directive, witnessed or notarized according to the law of your state. You can order state-specific advance-directive documents from Choice in Dying (800-989-9455), or download them free at choices.org. Give copies to your physicians and family members. If you lose consciousness, or the ability to make medical decisions for yourself, what your family says will weigh more heavily than your advance directives. If even one family member tells the doctors to keep treating, you may not get your way. While healthy, make sure they understand your wishes.
Most people’s first wish is to avoid desperate, do-everything-possible treatments when a cure is no longer possible. If you have a plan in place for stopping all treatment when your illness is terminal–and your family concurs–the doctors cannot legally defy you. But avoiding futile treatment is only half the battle. By rejecting such measures you may also deprive yourself of treatments that can ease the pain of dying. Patients and families are often unaware that pain-killing narcotics are legally available (you can learn more about them by looking at Web sites for “pain control” or “death and dying”). And many physicians assume, wrongly, that they’ll be censured or prosecuted for giving people controlled substances. Assisted suicide is indeed illegal in all states except Oregon. But as U.S. Supreme Court Justice Sandra Day O’Connor noted in a 1997 opinion, “a patient who is suffering from a terminal illness and who is experiencing great pain has no legal barriers to obtaining medication, from qualified physicians… even to the point of causing unconsciousness and hastening death.”
Signing up for hospice care is probably the best way to achieve optimal comfort care. But with or without a hospice, if you want everything possible to ease your pain, even if it might shorten your life, be sure your desires are noted in your medical record. The Supreme Court has cited two legal methods for bringing peace to dying patients when usual methods of pain management fail. The first is the “morphine drip”–a continuous administration of morphine at a dose that will abolish pain. If that’s not effective, a physician can also legally prescribe “terminal sedation”: barbiturates or other drugs providing continuous anesthesia. In the absence of feeding, death comes quickly.
Recently I met another patient, Agnes, who was 82 years old when diagnosed with incurable cancer. She told her doctor and her family, “I want to live at least four more months to do a painting for my granddaughter’s school.” Her physician arranged for low-dose chemotherapy that did not cause much discomfort, and Agnes had a remission. Shortly after she completed the painting, her symptoms returned with evidence of spread of the cancer. Now, she said, she was ready to die. She received excellent comfort care, lived three more good months and had continuous morphine for the last week of her life, with virtually no pain or discomfort. She was alert almost to the end, and she and her family said loving goodbyes. Agnes did it right. So can you.
