Making Wise Choices About Medical Care at the Edge of Life ~ long title, short chapter in Jewish Wisdom for Growing Older, lots of important material. Was TOUGH keeping my choices to ten. Now for my personal takes on Rabbi Friedman’s wisdom – she’s in italics, I’m in plain type.
As we grow older, we inevitably encounter a paradox: medical science is continually developing more marvelous capabilities to extend life, but the results of this treatment technology too often impose suffering on the person receiving it. We are caught between our love of life and of our loved ones and choices that are unprecedented and vexing. Are we obligated to do “everything” to prolong life when we or someone we love is ill? How do we know when enough is enough? When does quality of life trump the quantity of days lived? … Morrie, the most dapper, most life-loving ninety-six-year-old ever, suffered from an ever-spiraling decline due to congestive heart failure. On one of his many hospitalizations, his heart stopped and staff administered CPR. When he awoke some time later, Morrie said with fierce anger, “Don’t ever do that to me again!” – – Morrie’s story is a common one – an older who is okay with dying being cared for by a hospital staff or doctors who see death as a defeat. Reason to have a DNR – Do Not Resusitate – on the chart. Although doctors & staff have been known to disregard due to principles, it should be honored.
Ours is an unprecedented reality. Unlike any generation before us, we have access to ever-expanding life-extending technology for ever-older people. For example, octogenarians are the most rapidly growing group of surgical patients in the United States. … (Having so many procedures available) makes it hard to realize that there are even choices to be made – – and creates enormous guilt if a patient or family member even contemplates saying NO to treatment. – – Mom was one of those octogenarians receiving surgical services – her retinas were replaced in her late 80s. Was it necessary? No. Is it the sort of unnecessary care that drives up costs for everyone? Yes. Should I have I have recommended she thumbs down her doctor’s recommendation, accept poor eyesight as a natural outcome of living so long? Probably. Would I have? NEVER!
Dr. Dennis McCullough, a proponent of “slow medicine,” writes: “Modern medicine has complicated the situations of elders’ late life by offering better and more technological means of extending the length of human life while not necessarily greatly improving its quality. Often this has meant turning what used to be a brief, acute, life-threatening illness into a kind of prolonged decline or attenuated dying. “ – – Oh, the truth of that last sentence. How many olders are saved from death only to be doomed to a prolonged dying?
In other words, the array of possible treatments may prolong life but take away from the quality of life. And there should be decisions to be made, since use of all of this medical technology cries out for discernment. There must be decisions made, since most deaths in our day are deaths-by-decision . – – Few, if any, individuals & families are aware of, let alone prepared for, making the life or death decisions that are increasingly today’s norm. I strongly recommend that every adult read read or listen to Atul Gawanda’s outstanding, Being Mortal for a sense of what can happen & to plant a ponder of what YOUR response might be.
Five key values from Jewish traditions can guide us when we find ourselves or our loved ones on the narrow bridge between life and death. ~ the preciousness of life ~ there is a time to die ~ care of the person’s physical and emotional needs ~ preserve dignity ~ healing for the spirit. – – Every year, my church coordinates small group discussions around a topic. What conversations would flow from considering these five, from a Swedenborgian perspective!
When death is inevitable and imminent, no longer must we fight for every moment. Instead, we must refrain from burdening the person by the things we do for them and allow them to depart in peace. – – Letting go is impossibly hard for a lot of people. My only experience with this comes from my mother, who told the story of an older sibling who died as a baby – he was a perfectly normal baby, except he was lactose intolerant, could not get nourishment. As he was coming to the end of his tragically short life, my grandfather could not tear himself from sitting by the wee baby’s cradle. Finally, my grandmother came in, placed her hand on his shoulder & said, “Ben, let him go.” They left the room & when they returned some while later, Willy was gone. Sometimes the family leaving the room when someone is so close to death is a kindness, providing space for them to leave, too.
Hospice care can focus intervention and activity on maximizing comfort and on creating as much quality of life as possible. Sadly, too often denial or resistance, either on the part of the family or the physician, get in the way of beginning hospice early enough to have maximum positive impact. – – When Dad was being treated for terminal cancer, there was no hospice care. Mom’s wonderful physician, Dr. Bernal, was totally on board with arranging hospice care, while Mim’s hospice care was delivered in the same room she’d been in since being admitted. A lot of people don’t realize that advanced forms of palliative care can’t be delivered UNTIL a person is officially on hospice care. Alas, too many families balk at acknowledging there will be no getting better, that an end is in view. And way too many doctors see death as a defeat & dig their heels in rather than release a patient to hospice.
The simple value (care for a person’s physical & emotional needs) can get lost amid the swirl of high-tech treatment. We might ask: Will a proposed treatment advance the person’s comfort or well-being? How well are we really CARING for her? Does he have a pillow with a soft cover? Does she have her perfume? Is there music that he likes? Is whatever food she can eat really delicious? – – If I wasn’t already crazy about Rabbi Friedman, she’d have me at this passage. It brings to mind the covering doctor who convinced Mom that she should have a full blood transfusion, something she loathed. Praise be for the nurse who – against policy & procedures – called to give me a heads up. I hot footed it over, talked with Mom, asking why she’d agreed to the detested procedure. “The doctor said I would feel better.” I pointed out that while she would feel better, she still would not feel well – and who knows what the outcome of the lengthy miserable procedure might be. Bless Rabbi Friedman for her tender reminder about the importance of the little essentials – a soft pillow cover, a particular scent, favorite music. With Mom, it was body lotion & good food; she loved to be massaged with lotion & she never lost her appetite for tasty food.
One of the instructions in the Talmud for preserving an elder’s dignity is “listening to his voice – not contradicting his word.” We should make decisions based on the individual’s preferences, goals, and values. for ultimately only the individual can weigh the benefits or burdens of treatments. – – This can be HARD, if what they want goes against what we see is best. And it is essential. It is also why I believe it is essential for patients in such situations to have an advocate, someone who understands the options & is totally focused on the patient’s wants & needs, not the family’s, the doctor’s or the hospital’s. Mom had me in her corner & Mim had friends who stepped up in her’s. Everyone needs one – if one isn’t available within a family or friend circle, check to see if the hospital has a social worker on staff to fill the role.
Even when it is not possible to cure, it is always possible to bring spiritual healing, the healing that is shalom, “wholeness” — we can always “do something” – we can sing, touch, bless, pray, forgive, fulfill a “second-wind” dream, or just be there. … We can hope for clarity, compassion, and companionship as we make this journey. – – Earlier, Rabbi Friedman mentioned someone who said of an elder who was dying, “Nothing could be done & I did it.” He did it by doing something. Throughout those weeks that Mom was in INOVA/Alexandria & then St. Mary’s/Langhorne, it was bringing in favorite cds to play on her boom box, arranging visits from friends, plying her with vanilla ice cream with pineapple sauce, picking up a cup of seriously good coffee from the kiosk in the lobby.
Definitely one of those chapters that I’d love to make assigned reading for everyone over eighteen! A chapter as relevant to the teenager with a loved one nearing the end of life as the person at that far end.