Often, older adults have told me stories of doctors and/or hospital staff who ignored the refusal of life-prolonging care wishes of a now-deceased loved one. They tell me that they had insisted that their loved one did not want life-prolonging treatment, but nonetheless a doctor ordered feeding tubes, ventilators, and other life-prolonging measures. I have wondered—is this fear of wrongful resuscitation real or imagined? The short answer appears to be that the fear is real.
Years ago, when my wife I announced to her parents that we were expecting our first child, my father-in-law inquired innocently if it was okay to talk about someone being pregnant. He had been raised with rules that made that conversation out-of-bounds. My, how things have changed! These days we need only to turn on the TV to be subjected to conversations about PMS or flagging male libido. In this time when “anything goes,” I have been surprised to find that there are still some taboos. As an elder law attorney, I facilitate discussions about life, death, and disability—not an easy task because nobody really wants to talk about his or her own death. Oh sure, people can consider that they are probably going to die…someday. But in their heart of hearts most people can’t believe that they are actually going to die. How else do you explain the fact that 85% of the adult population are without a simple will, power of attorney, or health care directive? The most obvious answer is that they must not truly believe that they’re going to die. Although it’s difficult, I recommend that you take the time during the upcoming holidays and family gatherings to have what we call the Final Arrangement Conversation with your family. A Final Arrangement Conversation should have at least two distinct elements:
- A written expression of your attitudes and desires for life-prolonging treatment (or lack thereof) in the event that you are incapacitated, have been diagnosed as being terminally ill, or are suffering from a long-term memory-robbing illness; and
- A written expression of your attitudes, desires, expectations, payment source, etc. regarding your final wishes–how your family should handle your funeral, burial, cremation, religious tradition, probable cost, music, choices of service providers, etc.
Last Rites: Rescuing the End of Life from the Medical Profession reveals that since 1960, the life expectancy of a North American adult has been lengthened by 31 years. This is a stunning change in human life expectancy within an incredibly short time frame. He notes that even in 1978, the most frequent causes of death among adults were sudden–heart attack, stroke, and workplace accidents. Well, death from sudden causes may be down dramatically, but we have not defeated death–only delayed it. We’ve traded a quick death for the long, downhill trajectory of age-related memory and/or mobility losses. Terry Schiavo famously died without documents outlining her wishes for or against life-prolonging treatment. The ensuing controversy surrounding the decision to remove Terry from life support was a tragedy, and should serve as a wake-up call to the rest of us. Everyone should create a simple power of attorney (or a living will) appointing a trusted loved one as a health care decision-maker. However, you should be aware that Health Care Powers of Attorney (HCPOA) and living wills are woefully lacking if you have a diagnosis of long-term illness such as dementia, Alzheimer’s, or Parkinson’s disease. These documents use “triggering language” which creates an authorization to act only when you have been diagnosed as “terminally ill,” which is generally defined as having a condition which will be fatal within six months or less. Doctors do not consider Alzheimer’s or other long-term illnesses to be ‘terminal illnesses’. Patients need a way to make written declarations of their desire (or lack thereof) for antibiotics, tube-feeding, etc. when they are in the late stages of these long-term illnesses and likely afflicted with dementia. Watching a loved one endure long-term suffering is one of the most terrible experiences there is. I would have loved to have shared more years with my grandfather and uncle–but when I see friends and clients suffer multiple year declines, it makes me wonder if maybe Grandpa Jerry and Uncle Jack were “the lucky ones.”When I was a teen, my maternal grandfather Jerry died from a sudden heart attack at age 60. His death was immediate. Later, when I was a young man, my favorite uncle Jack (Jerry’s son) also died quickly from a heart attack. He was 58. Now that I am the same age, I worry that I will be hit with a sudden heart attack–just… about… now! But things have changed, and these days life usually ends slowly. Stephen Kiernan’s book,