March is a peculiar month.
It has tornadoes but also the emergence of the first shoots of bulbs and leaves. It’s the solemnity of Lent but also the carnival atmosphere of spring break. It’s spring cleaning, a time when we can no longer avoid that dreaded tax workbook we find under that pile of clutter on the desk.
Glumly we are reminded that nobody escapes death or taxes. For the Baby Boomers, that first part, death, is in the news. At least that is what Harvard physician Dr. Atul Gawande in his best-seller Being Mortal explores in a concise summation of “the medicalization” of death.
More than 20 years ago, my father was totally incapacitated after several health incidents by a massive stroke. He had specific written instructions not to resuscitate after such an event, yet my brother the M.D. hopped on a plane to Atlanta and strode into his hospital room where he was making a horrible rattle on a ventilator and pulled the plug out to a horrified staff. “Sue me,” he challenged. When he confronted my uncharacteristically mute mother and attorney brother about why they had allowed this, they sat like the proverbial deer in the headlights.
Doctors are trained only to prolong life, and in our “managed care system” that means the wishes of the dying are not necessarily heeded. It can mean unnecessary, extremely expensive procedures that are bankrupting our healthcare system and not improving longevity or quality of life.
What are those dying wishes? People want to curtail suffering while retaining their mental functioning, not be a burden on their family, strengthen family ties, remember their lives with some sense of completion, and leave a legacy to loved ones. Today, few people want to end up dying on a ventilator, with tubes, in a noisy impersonal hospital with no one respecting his or her wishes. Yet this is increasingly exactly what happens, even if people have expressed otherwise. Once a person enters an institution, he or she is in real jeopardy of losing the one thing people value above all else: free will.
There’s hospice or palliative care, but “99 percent of those facing hospice understand they are dying but 100 percent hope they are not.” In a brilliant treatise, Dr. Gawande explains how to direct end-of-life care and extend quality of life, which need not diminish quantity. He has four questions that must be gently posed to the elderly frail, the terminally ill, and those who face life-threatening and possibly debilitating surgery.
Do you want to be resuscitated if your heart stops? Do you want aggressive treatments like intubation and a ventilator? Do you want antibiotics (pneumonia has often been called the “old person’s friend”)? Do you want to be fed intravenously once you can no longer eat on your own?
The yardstick when his physically active father — also an M.D. — was faced with the prospect of life in a wheelchair with diminished capacity if he decided to go into a dangerous surgery surprised him: “As long as I can watch football and eat chocolate ice cream.” His father hated football, but this image enabled his family to figure out how to proceed with various end-of-life procedures. Most people would rather talk about their sex lives or clean toilets before having “the talk” about their lives or those of loved ones ending. Yes I have a will, but not an end-of-life plan for dying. It’s the least I can do for my children.
So I closed the book, went to church, and got the funeral workbook. It’s much more than the hymns, scripture, and burial-versus-cremation scenario. There are pages for important names and phone numbers for attorney, CPA, executor, banker, doctors, relatives and friends. There are places to find passwords, keys, codes, and documents. There’s a place to write your own obituary. Obviously you can do this without a church workbook.
I wrote down Gawande’s four questions, and my response to all four is no, if brain damaged. It’s now in my computer where I’m informed I should update it every year. Like when I do that other inevitable sobering task: taxes.