Fresh Thinking on the End of Life

hospiceby John C. Blair, II

Twenty-first century public policy debates tend to devolve into a binary argument between those who favor the choices of individuals amalgamated into a “market” versus those who favor a state intervention to add a dash of “equality” into outcomes.

However, Atul Gawande’s Being Mortal touches on an issue that frustrates all political persuasions.  The current end-of-life care choices and care delivery options frustrate nearly every American family. It is difficult to find an American in their sixties or older who does not implore, “Please don’t let me end up in a nursing home.” Whether it’s the smells, the food, the drab interior, the loss of autonomy, or fear of institutions, nursing homes are almost universally disdained throughout the nation.

Being Mortal addresses the question: How did we end up with a society in which so many end up with a nursing home as their final destination?  Gawande’s tome traces the history of American end-of-life scenarios from the literal poorhouse to the hospital to the current nursing home paradigm.

Gawande makes a convincing argument that the nursing home “default” is a product of viewing this period of life through a medical lens rather than incorporating other perspectives. Gawande, a Boston surgeon, writes, “Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul.” Thus, values such as autonomy or stoicism are lost in the pursuit of “safety” and “preserving and repairing health.” We end up seeing medical professionals trying to extend “existence” at the cost of what many consider empty and meaningless lives.

Gawande details the tragic consequences that this narrow medical focus can have for individuals, families, and societies as individuals pursue one in a million medical surgeries rather than focusing on the quality of their remaining life. He points to a study that found that forty percent of oncologists offer treatments that they believe are unlikely to work.

Gawande offers some suggestions on how end-of-life care options can become more holistic and loosen the grip of a purely medical perspective on these choices.

One suggestion is to allow and train physicians to practice “interpretive” medicine rather than “informative” or “paternal” medicine. Paternal medicine is when physicians communicate with patients aiming to ensure that patients receive what the doctor believes is best for them. Informative medicine is when a physician simply gives patients facts and figures and leaves the decision up to the patient. Interpretive medicine has physicians ask patients, “What is most important to you? What are your worries?” When the physician determines the patient’s priorities, he or she then maps out a program to best achieve those priorities.

Another suggestion is to better promote hospice care as an option to patients and their families. Gawande recounts his own positive experience with hospice treating his cancer-stricken father. Hospice can provide a much better quality of life than the safety-focused nursing home.

Gawande also points to a community-focused solution to “avoid the nursing home option” in Ohio. Athens Village was a group of a hundred people who banded together to pay four hundred dollars a year. This money went to hire a handyman to take care of each member’s household. Additionally, a director was hired who coordinated volunteers to cook food and check up on the members. A nurse agency provided discounted nursing aid costs. Churches and civic organizations provided a van transportation service and meals-on-wheels. This community allowed its members to remain in their homes and maintain autonomy rather than reside in nursing homes.

Being Mortal offers a lot of food for thought for Virginia policymakers. As the Commonwealth’s population ages, lawmakers and bureaucrats are likely to face more families asking, “What can we do to avoid the nursing home?” Perhaps it would be in the state’s best interest if the General Assembly provided funding for the state’s medical schools to instruct physicians in “interpretive” medicine for end-of-life conversations with patients. Another option would be to see if any legal or regulatory burdens exist that would prevent the formation of a community such as Athens Village.

John C. Blair, II is an attorney who resides in Albemarle County.  

There are currently 2 comments highlighted: 117142, 117173.

14 responses to “Fresh Thinking on the End of Life

  1. Thank you for this referral. I’ve wrestled with these issues of cancer and end-of-life on behalf of a family member and ended up with a good experience through hospice, the right choice in our case.

    The dilemmas are many in that situation but two in my experience rise above the others: (1) the difficulty every patient has in weighing the choices being offered without frequent, compassionate, professional guidance which often isn’t available at the time; and (2) the dispassionate, often ruthless, process for admission into an ongoing medical trial involving your specific cancer. In both instances, interpretive medicine is essential for the patient to make decisions; merely disclosing choices to the patient is not enough, as Atul Gawande’s Being Mortal makes clear. I would like to think that interpretative medicine is what a good oncologist seeks to provide in any case.

    Where I have a problem is with your notion that the General Assembly can do anything competent to influence the teaching or implementation of this sort of medical care. Is there a specific framework (i.e., adopted elsewhere) for this recommendation or are you merely expressing a hope for the future? Likewise, I too am intrigued with the Athens Village concept; but when you recommend that someone “see if any legal or regulatory burdens exist that would prevent the formation of a community such as Athens Village,” are there some folks you know of that are interested and in a position to do so?

    • Acbar,

      I intend to contact my legislators after reading this informative book. I am just one citizen, but I am going to encourage them to read the book and try to determine if there are barriers to the Athens Village concept.

  2. @Acbar – what is interpretive medicine?

    thanks.

    • LarrytheG,

      As I understand the concept as explained by the author, “Interpretive Medicine” is based on a physician’s understanding of the patient’s goals and then formulating strategies/treatments to work towards those goals. Thus, if your goal was to manage pain/maintain autonomy, the physician could work on those strategies. Those strategies would probably be different than if your goal as a patient was to pursue a cure for your ailment.

  3. Thanks John – I guess I never knew that was not already an option with physicians… but also – when people become compromised – what most really want is to be made whole again – and if that is not possible – then the choices below that are somewhat problematic – i.e. can vary dynamically depending on a variety of factors

    Doctors also – are held to certain standards by ethics and law and perhaps that’s part of it – that a physician, for example, cannot legally or ethically give you a shorter life even if that’s what you’ve essentially chosen by treatment options.

    we’ve just had a family member have a massive stroke and the conflicts about how to proceed are abundant and changing. Complete autonomy is no longer an option but limited autonomy is the goal – for a price – without any guarantees about longer term outcome. His options are controlled by how much money he had saved up over his life.

  4. Imagine how one might learn about “interpretive medicine” long before an end of life situation. And if one did so learn about “interpretive medicine that way, how he could take that experience and later apply it later to several end of life situations that confronted ones he loved?

    Imagine, for example, a man 50 years old suffers a shattered leg and that the physician on his case recommends an elaborate operation that the doctor says will restore “full function” to that leg. Imagine that instead the operation infects the leg to the point that amputation is necessary by reason of the infection alone. Imagine that afterward the patient learns from an impeccable source that not only did the operation performed have a very low chance of regaining “full function,” but that it also had a very substantial chance of severe and irreversible infection by reason of its complicated nature and lengthy procedure. But that if it had restored the leg’s “full function” the Doctor would get himself an article about it in a very fine professional journal that well could have lifted the Doctor’s already excellent regional reputation to a national reputation.

    What lessons are learned here, including those involving end of life decisions?

    One lesson from this story is that doctors, even very good doctors, are humans. They make mistakes. And they do so for reasons good and bad, some beyond their control, some unconsciously made, others not.

    So do you trust them? Do you “trust but verify”. Do you demand proof of trust? If so, how, and, at what level?

    Some truth that I have come to believe includes:

    Doctors, being human like everyone else found in life, too often and for a wide range of reasons, with and without good cause, cause more damage, pain and harm than is necessary, or that would have been caused had they done their job better, more wisely and/or with excellence, and or properly.

    Hence this unnecessary damage or pain in medicine and in being sick or dying occurs for a myriad of controllable and uncontrollable reasons, including such things as good luck and bad or having Babe Ruth at the plate instead of the young gun just up from double A ball. The corollary here is that health and medicine and aging and death is an inherently complicated and risky venture and it is far more subjective than humans by their nature, whether they are doctors or patients, are typically willing to admit.

    In addition, I believe that it is true that doctors and surgeons, given the particular circumstances of the case or patient, too often perform unnecessary and/or inappropriate treatments and operations simply because they are human. And for the same reason they also too often perform operations for which they lack the requisite skill or training. And that similarly they also perform badly by reason of their own sloppy performance. They have “off days,” for example, like professional baseball pitchers often have. Or by reason of their having a “rushed schedule that day,” so they fail to take adequate precaution. Or perhaps they perform a particular operation because they like or feel more comfortable doing those particular sorts of operations in lieu of others or because they simply want to try something new, irrespective of the needs of the particular patient. Or perhaps they have a new machine they need to use to pay for or to justify its cost to their hospital or lender. Or because they work under the control of large health companies and/or the Federal Government and must do things by “the numbers”, namely by somebody else’s numbers that have little relevance to the patient’s case at hand.

    Or simply because their ego has gotten out of hand, and they fail to realize that are dealing with the body, mind and soul of an entire human being, not just some technical mechanical fixture they think they know everything in the world they need to know about, irrespective of what that fixture is attached to and part of.

    Unfortunately this happens far more often than is commonly realized. The statistics on these often hidden cases of malpractice is startling. Infections caused by failure to properly scrub up before surgery simply by reason of the surgeons’ failure to take needed additional seconds to disinfect their hands has been shown to be a primary cause of hospital infection. Policies that force doctors to strictly comply with proper scrub procedures after years of neglect have dramatically reduced posts operative infections at many hospitals.

    In addition an in summary:

    All health care professionals, including doctors, are human beings susceptible to frequent error, bad judgment, off days, and are good at some things while bad at others, and sometimes most all doctor’s shade the truth and/or spin it and/or hide it and or outright lie for good reason, bad reason, and misguided reason.

    Some good doctors also go bad. This can happen for many reasons. These can include their age or health or finances or issues at home to flaws in their character ranging from hubris to narrow mindedness to rampant prejudices, to greed and envy, to sudden desperation or outright evil, or reasons in between. Another words, health care professionals are humans too.

    That also impacts end of life decisions, that’s my experience. At the end of the day the results there often depend on our own actions, our taking responsibility as best we can, to negotiate the inevitable minefield we have to pass through to get the best result we can for those we love. Ultimately too, this includes ourselves.

    But for goodness sake get the best health care professional you can fine. Your life and others depend on it.

  5. Reed, you have highlighted some of the more mundane reasons why health care can go awry. Physicians are human and they are flawed. That’s the human condition. That’s not to say we can’t put mechanisms in place to improve medical outcomes, but this problem will be with us no matter what kind of health care system we have.

  6. Here are more thoughts on interpretive medicine as it relates to end of life.

    Here we speak very briefly to those issues that arise within the one who is (or might be) terminally ill and dying, and issues that arise within and among his or her loved ones, and also those issues that arise by reason of those involved as health care providers. For those people participate too in some form or fashion or roll during that process of dying and death today.

    The end of a person’s life are often hard, indeed very hard, to work through in ways that have the best chance to find the best results possible under today’s circumstances. This has always been the case, always, and new far different considers are now coming to bear on death and dying.

    One’s death (or the death of a loved one) by its nature is imbued with highly charged and freighted emotions. Uncertainty, fear, anger, love, the full range of human emotions, all of them subjective and many often in conflict among all of those assembled, these depth charges almost invariable come to the surface or are repressed in potentially positive and/or harmful ways that today can too easily rule the process of someone dying.

    And yes, it is also true that a myriad of special interests arise, fueled by emotions like familial guilt, long-standing and unresolved emotional complexes and cultural values, and a wide variety of commercial interests (both legitimate and crass) can too easily today rule the process and outcome, to its great detriment. And in so doing bring about great harm in lieu of consolation and reconciliation, too often driven by strangers too.

    In times past these matters were more easily dealt with and resolved, I suspect. Perhaps many of us have lost much the collective wisdom and outside structure of emotion and cultural support that used to be in place in earlier times and cultures to help people deal with the often terrible ordeal of ones dying and death, whether their own or that of someone they loved.

    If this loss of cultural superstructure is true, a few major reasons for this unfortunate loss might be:

    In earlier times, Death played a far more ubiquitous roll in everyday lives. Death was everywhere. In plain sight, or just around the nearest corner, never out of sight or mind or ear shot for long, but right in front of people, in the same room or if not then up the staircase. Most lives were brutish and short too if only because incurable sickness, implacable injury, and death ruled everywhere, on the surface, right before us or just behind the closest doorway. There was no escape. Typically death appeared suddenly and came mercilessly with brute unstoppable force or it lingered in ways difficult for many of us to imagine today. Death and dying back then forced people to live with and within it, constantly. There was no escape.

    So people for sanity, if for no other reason, had to erect great and constant defenses. These defenses were many and endlessly varied.

    Death fueled many things.

    People built magic and religions to play a central roll in lives otherwise overwhelmed by death and apocalypse. The entire complex of human spirituality, indeed the incredible rise human consciousness, was most likely driven up from the depths of our psyche by death’s compulsion, its force and its demand for our attention, for our submission to it, or our transcendence of it, with nothing left for us in between.

    This is all old-fashioned thinking for some but likely its impact is far more powerful today than we realize. In fact, these are the forces that might well be the controlling reality in our lives and our world, our ruler day in and day out like it’s always been, despite our illusions and delusions to the contrary.

    Many think, and I am one of them, that this sublime conclusion is irrefutable from the prehistoric funeral records that our ancestors left behind for us to discover. Indeed the prehistoric memorials that mark our ancestors confrontation with onrushing death speak even more powerfully from the past to us today that do relics our ancestors used and left behind to confront the everyday mysteries and miracles of their own birth.

    In any case it is for sure that they founded religions (their teachings, rituals, and rites) to help them deal with Death’s awful truth and so guide and comfort them, and help them find, or impart and reaffirm, the meaning in and of their lives and deaths and of the our dying – those things they otherwise could not live without, if only because the deaths of those around them brought their own closer and more certain to take them off as well.

    So one question might be: To the degree those defenses from our earlier times are now gone, how do we living today negotiate with death now?

    Paradoxically, modern medicine, its ethics and its power to extend life, however beneficial those gifts may be to those alive today, modern medicine and its consequences for sure now add new risks, pitfalls, and complexities to the art and craft of dying well.

    And sometimes, I suggest, this reality of modern medicine can bring into question the particular benefits and opportunities that modern medicine might bring to each of us (and our loved ones) in its quest to insure that we live longer, often by its direct intervention by whatever means it invents and has then at hand to insure that we do not die.

    The question grows daily.

    Today, and each passing day, modern medicine and those who control it bring more and more forces and players onto the stage with the mission of gaining more and more control of life, when it starts, how it ends, and what happens in between, including that of telling us, and those we love, how and when and where we and they are to die.

    • Mr. Fawell,

      Thanks for providing us with some more perspective on this issue.

      You might be interested to know that Gawande does address some of the issues you mention. He writes about how “death” used to be a norm, and that cultures had many tools to assist them in processing these issues.

      He mentions that medieval Europe even had “guides to death” about “ars moriendi”, the art of dying. He also touches on how one’s “last words” used to hold a very prominent place in families and how that tradition is withering away.

  7. We Americans – have so many varied options and quandaries as to how we go about dying -long before we die – starting far back in our lives and I do wonder sometimes if or how our path to death is easier than 90 % of the folks on the planet who have a much more narrow cut-and-dried path because they do not have access to modern medicine.

    You get sick – and you die. Here – we get sick and we start our complicated journey.

  8. Mr. Blair –

    You mention “that medieval Europe even had “guides to death” about “ars moriendi”, the art of dying. He also touches on how one’s “last words” used to hold a very prominent place in families and how that tradition is withering away.”

    I am currently editing the war letters of a WWII combat Marine. In the first 9 months of his 18th year this young combat decorated Marine confronted the death and dying of his fellow Marines on Saipan, Tinian and Iwo Jima.

    His peers in combat were mostly 18 years old. Many were friends killed in plain view. Some died next to him. One of those who died next to him is said to have “screamed for several minutes for a corpsman but they were all dead themselves, the cry of a dying man can be horrible …”

    The young Marine goes on to write:

    “But always there is a point where the pain can go no further … and (this man like all I saw dying) passed away with murmurs of or about his savior on his lips … I guess the assurance of eternal life is really what makes death so much easier than one would believe. ”

    His letters are filled with the critical roll that faith played among Marines before and during combat in WWII. Indeed he says its roll in the life of WWII marines began in Boot camp, and that it was critical to these men whether they were the saltiest drill Sergeant in Boot Camp, or later the Sergeant Major in his Battalion or the greenest private.

    And the letters say that such guidance in matters of faith were important to individual Marines whether they would admit to their need for such “guidance” publicly or not. Indeed many Marines, whether junior or senior enlisted (non-commissioned officers), who would not do it in public would approach even junior Marines in private for spiritual guidance, particularly if they were known to carry Bibles.

    Thus my father, who commanded the Marine combat Battalion of this young letter writer, demanded that its Chaplain take the very same risks on the battlefield to deliver words of consolation, reconciliation and last rites to wounded and dying marines that Navy Corpsman were expected to take to deliver medical aid on the field of battle. He considered this a most serious and obvious obligation of any commander. His men deserved no less. Chaplains unable to “do their job on the battlefield” were dismissed and replaced with those could do their job. Those are his words.

    Of course these young WWII marines likely had better opportunities for exposure to faith, and stronger families and communities than many of us have today. Still I suspect that we today would quickly return to more traditional ways to find spiritual support in times of great stress and peril such as mass life threatening circumstances should they arise just as so many generations in America have done before us.

    But what concerns me now is how we are treating those of us reaching end of life experiences today and treat them in the future absent a wake up call so horrible that its jerks us back to a fuller appreciation of our obligations as individuals to care for those we love or should love at the end of their life. This includes the need to better prepare them and ourselves for the death that they and our families and other loved ones deserve and desperately need. But do we today even know the need is desperate? And what the death of any human being deserves, much less those we love? I fear more and more of us are losing this ancient wisdom at an alarming pace.

    What is said about war applies to everyday life, including civilian life. A battle with one killed in action is just as terrible to that single dead soldier as a battle that takes thousands of lives.

    We have only scratched the surface of the discussion needed here.

Leave a Reply