It seems to me that we are in the midst of returning to personal, familial care of our aging population ~ a revolving paradigm in end-of life care choices, if you will ~ and I couldn’t be more THRILLED!
My first taste of death
1992 ushered in my first hands-on experience with death. “The only thing I have left to do is see my first great-grand-baby,” my grandpa said, after learning that he had a cancer which would certainly kill him within months.
It was April – and Lauren was due in June. “Popop’s” skin continued to yellow, his legs grew weak, and my strong and self sufficient grandpa turned to a walker for assistance as he shuffled throughout the house. Six days after Lauren was born, my mom and I jumped in my little white Mustang and drove the long and loud six hours to his home with a newborn.
Popop greeted us warmly, his frail and crepe-like yellow arms gathered Lauren’s plump and pink body and he held her close. His color matched the amber sheets on his hospital bed in the office, and he walked slowly and deliberately with his walker to the bathroom or the porch when he moved. He found a chair waiting close to every hallway so he could rest and catch his breath between steps, and to have a lap so we could place Lauren in his arms for a cuddle. Her rosy skin, inquisitive eyes and incessant wiggles while in his arms offered my first glimpse of the juxtaposition of the circle of life: we live – and we die.
The morning after our arrival, Popop didn’t awaken. He was there, in his bed, and his breaths were shallow and slow. His jaundiced skin turned more pale, with mottled patches of a faint hint of blue. He wouldn’t open his eyes; his hands didn’t reply to my squeezes. His body was shutting down, and I met first-hand with what had been only a distant concept: death itself.
I learned much in this experience, as painful and scary and lonely as I felt.
A) Call it corny if you will, but I intuitively knew then that we humans can sometimes choose the timing of our deaths to an extent. Popop said he needed to see his first great-grand-baby. He gave notice to us all that we had two months left with him before he reached the final goal he set for his life. We needed to wrap things up – get papers in order, hug and make peace, engage and make memories. This was to be his last gift to us, and we had time to give this gift to him.
B) Call it peculiar if you will, but I was suddenly fascinated with the behind-the-scenes science of how a body works! A new life, just days old, was at once completely dependent on me for survival yet she was her own being. My crazy body had nourished and grown this little person, pushed her out of a quite small tunnel, was leaking from parts that used to be much closer to my chin, and had morphed into an unrecognizable inflated ball of cells which could no longer fit into a dress appropriate for a funeral. And there in front of me was the aged body of another I used to know in vibrancy. He had been larger than life to me; when, how did he become a body that no longer worked?
“What happened inside of him; what would happen inside each of us as we live the last stages of our life?” My questions snowballed and ironically for me, the landmark book “How We Die” was published that year, explaining all of these things for the layperson. Though it would be a few years before getting to nursing school, I’ve been an end-of-life caregiver ever since this spark curiously ignited!
C) Call it a blessing if you will, I learned there are ways of caring for loved ones as they live the last stages of their lives which can be peaceful, reverent, rewarding, even fulfilling. Beautifully naively, I guess, I didn’t then know that there WAS any other way to die. I thought people died at home, with concessions like walkers and hospital beds to help them be safe and as comfortable as possible, surrounded by people they love – and who love them.
I thought every body was treated as much more than a physical body, rather as a valuable construct of physical structure surrounding a beautiful mind and spirit, a working set of values, an arrangement of atoms who carried out meaningful tasks and relationships and goals in their lifetime of worthiness. It was only later that I learned that our experience was but one paradigm of end-of life care choices.
Dying per our preferences
In the years following nursing school, I enjoyed my time learning and growing and being ever on-the-go in the busy ED (ER) and Medical Surgical units of my medical center in California. It fit my fast-paced personality to a “T”! Moving to Jackson Hole, Wyoming, I dipped my toes part-time into home care, particularly with patients who were in the midst of living what was likely the last stage of his or her life. What an honor to help facilitate the mending of relationships, to hold a human’s hand while they reminisce about a favorite time in their life, and to care for their body, mind and spirit as they reconcile a life lived once.
And as I held more hands, rubbed more backs, facilitated more reunions, I also saw that not everybody dies in their version of “well”, nor do many have their personal wishes carried out as they live the last stages of his or her life!
Living and dying “well” is, of course, relative.
Some might define living “well” in their final moments, days or years as being without intolerable pain. Others might define it as being able to drive to the grocery store and carry out the tasks of daily living on their own, to be able to gather with friends over a pot of homemade soup, or to continue to work and rake the church grounds each Saturday. Some people might say “when I can’t clean my own tush, take me out to the pasture and shoot me.” (Yes, I’ve heard that!)
Still another person may request that every possible medical and technological measure should be taken to extend their life, and some others advise that ‘nature should take its course’. Many might have thought about their pending demise, whether it be tomorrow or forty years from now, and how they would like their body, mind and spirit cared for, but have not shared their desires with anybody else.
“We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being,” says palliative care physician and author, To define what living “well” – and well-being – means to each of us, and what loved ones would do about details if and when they see we are not meeting our stated desires of living “well”, can be a grand undertaking. If we take the process in smaller ‘chunks’, however, it can seem more manageable. There are a variety of legal concerns which can help you get the care you want:
Health care Power of Attorney: Otherwise known as an HCPOA, this document allows you to legally assign a trusted person in your life to make decisions on your behalf if you are not able or willing to do so! What a gift to you (that you will know and trust that your wishes for your body will be carried out), AND what a gift for your caregiver (to never have to second guess the decision he or she will make with doctors because they will work to be sure ever choice in aligned with your wishes!)
Advance Directive: Provide directions about what YOU want for your health care if you are unable or unwilling to say so! Would you like CPR if in this circumstance but not that situation? Might you want a feed tube for sustenance if your (disease/accident/bodily damage) renders you unable to swallow? What if that were going to likely last a lifetime? Would you like assistance breathing with a machine if it extends your life? What are YOUR wishes for your body, and in what circumstances might that change?
Five Wishes: Well beyond the HCPOA and Advance Directives regarding the care for your physical body, there is, in my opinion, a wonderful pamphlet called “Five Wishes.” Not only does it have the documents described above (with legal value in many of the 50 states), its questions go well beyond the legal realm: Would you like someone to rub your feet if you are ill and in a hospital bed, or does the thought of someone being in your room and actually touching your callouses you make you cringe? Would you like for your room to smell like cinnamon candles, or to have a favorite song played at your funeral?
Perhaps you prefer a non-religious, roaring celebration when you die, or you’d like your long-lost brother to hold your hand when you take your last breath, if he can make it in time to your bedside. Would you like to be cared for at home, or do you think that’s too much a burden on your family? What are YOUR wishes? For only five dollars(!), it will walk you through thinking about and writing down some of your very personal wishes on paper to be able to leave them or share them with those you love! I have zero stake in this company, will not profit a penny from you buying this. I simply love the thought-provoking questions and did actually personally profit from using this booklet, as my daughter died from lung cancer last year. It was truly a gift (for me and, I believe, for her in receiving it) to be able to provide the little details I that knew she enjoyed and envisioned.
Atul Gawande continues in“In the end, people don’t view their life as merely the average of all its moments—which, after all, is mostly nothing much plus some sleep. For human beings, life is meaningful because it is a story. A story has a sense of a whole, and its arc is determined by the significant moments, the ones where something happens. Measurements of people’s minute-by-minute levels of pleasure and pain miss this fundamental aspect of human existence. A seemingly happy life maybe empty. A seemingly difficult life may be devoted to a great cause. We have purposes larger than ourselves.”
The profound truth in this statement cannot be overemphasized. As each one of us lives EVERY stage of our life, we are more than a number on a pain-scale, more than a number in the waiting room, more than our physical history written in the doctor’s chart. As we look at living as a number or an average, versus making meaning of our life – our stories, our moments, our pleasures and angsts – how might we create a model of care based on our desires, our preferences for our person/mind/body/spirit, such that when, at the end of our lives, we can truly LIVE ‘well’ as we DIE?
A revolving paradigm in end-of-life care
I often live in the presence of those living in what they believe to be their last stages of life. Sometimes they are anxious and fearful, sometimes their sense of peace is palpable. Having been present to comfort my grandpa, my ‘bonus mom’, grandmother, mom-in-law, and my elder daughter, in addition to my newest friends and their families who have called on me to help comfort them in their dying days or years, there are indeed many types of end-of-life care scenarios possible for each individual, as well.
With the incredible pace of technological advances in health care, people are frequently barraged with tests and ‘treatments’ which may or may not pose short term OR longer term benefit to them. Some may not even be within their scope of stated preferences! This article by oncologist, bioethicist, end-of-life care researcher, policy-maker and author, Ezekiel J. Emanual, is particularly relevant and poignant in relating to a health care system caring SO much that it not only hurt the patient (his father) but blatantly went against his preferences in their quest to render such help. If anyone had had their desires spelled out clearly enough to have been followed, it was this family!
The landscape has certainly changed. In the last mid-century in America (and, currently in many countries around the world), the aging were typically cared for, at home, by their loved ones rather than in a hospital. Death was not by any means hastened but was allowed to happen, naturally, as the disease process played out, and without a barrage of technical intervention.
Frequently without the advances of modern medicine, the dying person and his or her family would not aim for treatment as a cure but for comfort, providing relief from the symptoms and stress of illness, thusly improving quality of life for whatever quantity of life the person’s body has left. This is called “palliative care.”
Dr. Ira Byock, notable palliative care physician, teacher and author, wrote in his book The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life, “It is not easy to die well in modern times. Because so many treatments now work, many people survive longer with one, or several, previously lethal conditions. Clinicians now talk about a patient’s “illness burden,” a term for the accumulated aches, pains, and disabilities that come with diseases and the side effects of treatment. As odd as it may sound, people are sicker before they die today than ever before.”
Dr. Byock continues: “When it comes to caring for people with advanced illnesses, our social systems are so broken and our health care system is so dysfunctional and, frankly, neglectful that it would be easy to become furious. In truth, however, this predicament is no one’s fault. It is a consequence of living in remarkable, unprecedented times.” Ezekial Emanual and his father were certainly caught up in these times. The prevailing attitude of ‘test more, treat more, do more’ conflicted with Atul Gawande’s findings regarding people’s perception of wellness being in the creation and living out of their stories, not a pain scale.
How then, might we find a better balance of utilizing the unprecedented technology of today with accepting the undeniable truth that we will all, ultimately, die? I believe that we, especially as “westerners,” tend to deny that death is a part of life – EVERY life! Dr. Byock pronounces that “Americans are scared to death of dying. And with good reason. While rarely easy under any circumstances, we make dying a lot harder than it has to be.”.
From health care and treatment decisions – to where we will live in our final days and years – to who will care for us, how well, with what finances, and within which parameters, living in the end-of-life is not for sissies!
Challenging choices loom around every corner. 23% of our population is over 65 years of age. The longer we live, the more our “illness burden” increases, and the more we choose to test/treat/repeat, ultimately, the more funds we deplete in the quest for a cure (our lifelong earnings as well as the government’s subsidizing “programs”); the more nursing and medical care professionals are needed in the midst of a largely dwindling pool; the greater the chance of ending up in a center designed to care for elders with the newer reality of adult children (who would have used to be default caregivers for their parents) become dual-income earners to simply pay their mortgages.
Well beyond the financial implications of our aging population (and their loved ones), the quality-vs-quality of life debate shows no signs of easing. There are accusations of ‘death panels’ – insurance companies, doctors, interest groups, etc., who would determine care (or the curtailing of care) based on profitability or, rightly if it were going to happen, on prognosis. (But what if it is your mother who is not chosen for the limited drug versus the 20-something in the next room?!) Largely, doctors became doctors to help – to heal! (But what if, with their impassioned hearts and drive for the cure, they miss the signs that a person’s life is no longer full of well-being and story creation for that person, rather is only a dawdling series of test/treat/repeat?)
Is it realistic to expect that, with our diverse political, religious, socio-economic, educational and experiential perceptions, that we can truly house, care for, and meet the individual needs of our aging individuals as a “community?” Is that even our ‘right’, stated goal, or best potential outcome?
Our ‘system’ is already one burdened and bursting at the seams. Stories of families caring for parents and grandparents, like my “Popop,” in their own homes seems a distant blur. Dr. Byock and Dr. Gawande, among other notable researchers, teachers and caregivers, are bringing these sometimes-broken systems to light. It is not always possible, nor even optimal, to care for an individual at home; circumstances from pain control to relationship issues, finances, safety concerns and more all need to be evaluated when care for the whole person. The trend back to personalized, familial care where possible is palpable – and now oddly unfamiliar after just a few decades to the move toward care-institutions (nursing homes, assisted living centers, etc) and cure-at-all-costs care versus palliative therapies. Are we on the cusp of a revolving paradigm in end-of-life care?
Might we begin and continue this conversation in each of our homes (and doctor’s offices) with our trusted loved ones and advisors?
How do YOU want to be cared for in each stage of your life? How, where and with whom would you like to spend you last stage of life? In what ways have you communicated this information to your loved ones and those who would care for you if you couldn’t make the decisions on your own – be that tomorrow or a decade from now? Do you have the tools you need? What might happen in your life to make you consider changing your preferences, and how will you go about doing so?
Might this thoughtful process bring about some peace of mind for yourself – and the people who love you? I look forward to hearing about how they receive this gift. Here’s to truly LIVING while we die!
— Lynn Sherwood-Humphries is an author, speaker and educator about End-of-Life Care Choices and communication. A serial entrepreneur, you might find her starting or revamping businesses for optimal success, competing in shooting sports, or hiking the hills surrounding her home in beautiful Jackson Hole, Wyoming.
If you know someone who is newly diagnosed with lung cancer (or are the person who loves that person), download a copy of Lynn’s FREE book, “Lung Cancer 101” (her labor of love after her daughter was diagnosed in 2018), HERE.
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