Dying is one of the few events in life certain to occur–and yet one we are not likely to plan for. We will spend more time getting ready for two weeks away from work than we will for our last two weeks on earth.
We cannot defeat death, although we often seem bound to resist it, no matter the cost in terms of patient agony and family suffering. That there is also a financial cost (thousands of dollars for every day in I.C.U.) is almost beside the point.
Death is inevitable. It should not be perceived from a place of fear and it should not be viewed by the patient, family or physician as a defeat. How many times do we hear “If we had known sooner what the options were, we would have….”. We need earlier use of Palliative Care and earlier hospice referral. We need to recognize that the fight to hold death at bay should not be waged beyond the point of a patient’s tolerance.
As Moliere joked, “We die only once–and for so long!” So we should choose to die well. Too many of us don’t. According to a new TIME/CNN poll, 7 out of 10 Americans say they want to die at home; instead, three-fourths die in medical institutions. More than a third of dying people spend at least 10 days in intensive-care units, where they often endure torturous (generally futile) attempts at a cure. Specialists say 95% of pain in terminally ill people can be mollified, but studies show that nearly half of Americans die in pain, surrounded and treated by strangers. A recent survey found that 3 out of 5 physicians treating dying patients had known them less than a week.
There are so many flaws in American medicine: our lack of palliative care, our unwillingness to face end-of-life decisions, our inability to stop the procedures and just let go, and our use of endless, pointless and painful procedures. Why is this medicine’s default death for so many people? Even today, many doctors are reluctant to refer to hospice care, especially for unpredictable diseases like heart failure, Parkinson’s and Alzheimer’s. Some fear that a short prognosis will be self-fulfilling, and many just don’t like to tell someone he is dying. Hence the average length of stay in U.S. hospices is between two and three weeks, hardly enough time to take advantage of a hospice’s supportive environment.
Doctors could speak more openly with patients about prognosis and mention comfort care when a serious illness is first diagnosed–even as traditional treatments are explored. Then, if a cure isn’t found, be honest and say, “I don’t think I can cure you, but I’m not going to abandon you; you’re going to get good consultation, we’ll take care of your symptoms and take care of your family.”
Doctors are only a part of a more humane way to die; patients need to take an active role. The most challenging reform may be to get patients to become their own advocates for better death. Americans as a whole have a hard time discussing dying–even those who have planned for it. According to the TIME/CNN poll, 55% of those over 65 now have an “advance directive,” a legal document that lays out what sort of care they want before death. This number has never been higher. But only 6% of those worked with a doctor to write the document; other polls have shown that very few people even tell their doctors they have advance directives. In addition, a study found that although many Americans legally designate someone else to make medical decisions after they are unable to, 30% of those who have been designated don’t know they have been picked.
Changing attitudes means getting more people to give up rescue medicine in favor of comfort care when the hope of a cure is minuscule.