Grappling with the End of Life

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My mother was diagnosed with stage IV cancer in 2001. This was devastating news, but thanks to a combination of excellent doctors, groundbreaking medicine and resolute determination buoyed by an abiding faith in God, my mother survived and was able to enjoy a relatively high quality of life for over a decade despite several recurrences.

Then last year a new type of cancer was discovered. In light of past experience, I was concerned but optimistic. And sure enough, by summer the new type of cancer had responded as hoped to therapy and was declared in remission. Out of an abundance of caution, the medical team recommended a procedure that was intended to ensure that the cancer would not return. And so last October my mother wrote me:

I don’t know if I already told you, but my surgery day is Tues. The Dr. expects the surgery to take 6 or 7 hrs & then for me to go to ICU for 3 days. Then to a room for another 10 days or so; a total of 2 wks.

I replied by telephone and we had a nice chat. I asked if we should reschedule our annual trip to the US; no, she replied, it would be better to come when we usually do to give her time to recover so she can enjoy our company when we arrive.

It would be our last real conversation. The operation crippled her ability to breathe on her own, and when we met three months later, she was still in the hospital and could barely speak through a valve on her ventilator. And what she did say broke my heart: “I can’t live like this!” At least she didn’t have to for long; her suffering ended six weeks later.

Her dissatisfaction was not unique. As the president of the Institute of Medicine said at the September briefing of the report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life: “Patients don’t die in the manner they prefer.” One reason is a simple one: “the vast majority have not engaged in an end-of-life discussion with their health care provider or family.” [IOM (Institute of Medicine), Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life (Washington, DC: The National Academies Press, 2014), S-9] Dr. Pizzo, co-chair of the Committee on Approaching Death: Addressing Key End-of-Life Issues, added at the same briefing “that in surveys of doctors about their own end-of-life preferences, ‘a vast majority want to be at home and as free of pain as possible, and yet that’s not what doctors practice.'” But even if patients have at some point expressed their wishes, and caregivers are on board, adapting those preferences to changing circumstances remains a challenge that can tax both the dying and the living.

Now that a few months have passed since my mother’s death, I’d like to reflect on how I experienced my mother’s final months as a (wholly inadequate) contribution to a wider conversation about end-of-life issues:

A continuing public discussion is essential to develop a better understanding of the modern experience of dying, the options available to dying patients and families, and the obligations of communities to those approaching death” (IOM, 1997, p. 270). The rationale for this conclusion is that creation of a more supportive environment for people near the end of life and their caregivers and families—one that would ensure that people die free of avoidable distress and “find the peace or meaning that is significant to them”—requires attitudes and actions that can be motivated, strengthened, and sustained through continued public discussion. [Ibid., 6-1]

The dynamics of life and death make fools of even the best planners, which most of us are not, and common preparations, such as drafting a will and making advance funeral arrangements, don’t make much difference until after death. The challenge is anticipating the kind of decisions that might be made to reduce confusion and guilt among the survivors and enhance the quality of life for the dying before their time has come.

In our case, it may have been the miracles of medicine and faith we had experienced over the last decade that contributed to a sense of complacency. By the grace of God my mother had always pulled through, and there didn’t seem to be an immediate reason to believe that the recommended procedure—intended to ensure years of cancer-free life—would actually precipitate my mother’s death. And so we were satisfied with her long-standing request that she not be left comatose on life support—a response to her own mother’s final months and not specific to any illness or treatment she had experienced or anticipated experiencing.

While this guidance was a good start, it ended up not being very useful. For even when it became clear that recovery was not an option, she never did lose consciousness, which meant that we were left in a decision-making limbo. My brother, who shouldered the burden of making the healthcare decisions on her behalf, describes his struggle to determine and then adapt her wishes to the changing circumstances:

What made it so hard with mom was her level of consciousness. I had promised her that I wouldn’t let her lay comatose on a ventilator. However, while she was able to make decisions there was no way I was going to do anything. Mom and I discussed it several times, and each time she chose to stay on the ventilator while refusing other treatment. I knew mom would never get better and couldn’t believe she was going to try after all that had been going on. But after family members encouraged her to give therapy one last try, I thought, well, maybe getting her up for therapy will help her get better or pass on faster. Unfortunately if you want to try to get better you have to accept the full range of treatment, which just prolonged the inevitable with her on life support in the ICU. Talk about an internal struggle. There was no quality of life and no hope of one, yet she was alert for the most part.

But alertness did not translate into unambiguous guidance to family and caregivers. This too is a common experience as people near the end of life: “The overall quality of communication between clinicians and patients with advanced illness is poor, particularly with respect to discussing prognosis, dealing with emotional and spiritual concerns, and finding the right balance between hoping for the best and preparing for the worst.” [Ibid, 6-1] In a fog of medication and stress, confusion reigned on a number of occasions, causing distress that might otherwise have been avoided.

After several months in the hospital, for example, my mother started to refuse treatment. Instead of contacting my brother to discuss how to proceed, caregivers responded by withholding not only treatment but also basic hygiene, leaving my mother to lie in her filth until we found out during our next visit. On another occasion, we arrived for a visit only to be told by a case worker that my mother would be discharged that evening and we would need to find somewhere for her to go. For several hours we numbly toured local nursing homes until my brother, the designated health care agent who had known nothing of these plans, was able to make the three hour drive and work with the hospital to determine that in fact discharging her under these circumstances would be a mistake. On another occasion at the sub-acute care facility where my mother spent her final weeks, a night shift nurse interrogated my sister about the care instructions as she sat vigil, finally coming to the incredible conclusion that a report to the county adult protective services for abuse was in order.

Of course, poor communication is not the only obstacle to end-of-life planning centered on the well-being of the patient: “People’s views on serious illness and the end of life, bereavement and loss, and the duties of caregivers are deeply held and vary widely among individuals.” [Ibid., S-15] These views can be a source of strength in a difficult time; they can also be profoundly unhelpful. We didn’t realize until it was time to make hard choices that we disagreed on fundamental aspects of my mother’s care. In the decade or so leading up to my mother’s final months, family members were able to put aside differences and rally around mom. But when she started to slip away, strong disagreement about how her life should end led to decisions that in hindsight merely prolonged the inevitable at great emotional, physical and financial cost.

In our case, there was disagreement whether anything less than the full scope of modern curative medicine was tantamount to (assisted) suicide. Those who think carefully about ethics would no doubt find the disagreement misinformed—withholding or withdrawing treatment is not assisted suicide. Even the very general guidance provided by Handbook 2 on prolonging life acknowledges that “when dying becomes inevitable, it should be seen as a blessing and a purposeful part of eternal existence. Members should not feel obligated to extend mortal life by means that are unreasonable.” Of course, the devil is in the details, and for those who take the counsel of religious authority seriously, much rides on what one considers reasonable. But when we find ourselves teetering on the brink of mortality, emotion tends to push reason aside. We all had, more or less, the same information about our mother’s condition at our disposal, yet we came to different conclusions about how to respond. For some of us, doing anything less than everything possible felt like suicide, and that was the emotion that ruled the day.

In the 21st century, the desire to prolong life may be motivated by strong emotions such as the fear of death, feelings of regret, an inability to let go of loved ones or some other reason. At least as important as the desire to prolong life, however, is the simple fact that doing so is an increasingly realistic option:

Until the early 20th century, death was as natural a part of life as birth. It was expected, accepted and filled with ritual. No surprises, no denial, no panic. When its time came, the steps unfolded in a familiar pattern, everyone playing his part. The patients were kept clean and as comfortable as possible until they drew their last breath.

But in this age of technological wizardry, doctors have been taught that they must do everything possible to stave off death. We refuse to wait passively for a last breath, and instead pump air into dying bodies in our own ritual of life-prolongation. Like a midwife slapping life into a newborn baby, doctors now try to punch death out of a dying patient. There is neither acknowledgement of nor preparation for this vital existential moment, which arrives, often unexpected, always unaccepted, in a flurry of panicked activity and distress.

In 2001, cutting-edge medical technology and procedures helped give my mother an additional 12 years of happy and productive life that would not have been possible decades or even just years earlier. For this I am profoundly grateful. The challenge is determining when enough is enough. Sometimes, when access to nature’s anesthesia is barred by taboo or technology, the quality of life for the ill exceeds the nightmares of the healthy. But the above description of the modern status quo squares with my experience with the strong desire that death be delayed at all costs; and where insurance and other means allow, these can be substantial, if not staggering, even if the returns are diminishing.

Hoping for the best is sometimes all we have in difficult circumstances. But hope too comes at a cost: “In the absence of adequate documented advance care planning, the default decision is to treat a disease or condition, no matter how hopeless or painful. A result of inadequate advance care planning, therefore, can be more intensive treatment, as well as more negative impacts on family members.” [Ibid., S-9]

Ultimately, we did what we felt we could have, second-guessing ourselves every step of the way. More extensive planning could have reduced confusion and guilt while increasing the comfort of my mother’s final months after her unexpected turn for the worse. But it is important to note that “even when these important conversations have occurred and family members are confident they know what the dying person wants and wishing, making those decisions is emotionally difficult, and families need assistance and support in this role.” [Ibid., S-2] Dying in America makes a number of recommendations to this end, including:

  • encourage meaningful dialogue among individuals and their families and caregivers, clergy, and clinicians about values, care goals, and preferences related to advanced serious illness; and
  • dispel misinformation that may impede informed decision making and public support for health system and policy reform regarding care near the end of life. [Ibid., S-15]

The report’s acknowledgement that life and death isn’t simply a matter of vital signs is perhaps obvious but nonetheless important—we might increasingly die in sterile clinics following technologically elaborate procedures, but we do so against a backdrop of beliefs and ethical considerations about this life and the next. Consequently, the call for clergy and faith-based organizations to participate in a dialogue about the end of life seems appropriate and needed.

It is not the case, of course, that the church has been silent on these issues. As I struggle to come to terms with my mother’s death, a lifetime of church activity provided a framework for thinking about death, and faith in the restored gospel has been a source of both guidance and comfort. Clergy and friends have also provided moral support.

Of course, there is much more that can be said in response to the complex tangle of social, psychological and spiritual factors that accompany death. For example, I am keenly aware that it is easier to find comfort in a religious setting due to the fact that the circumstances of my mother’s death would not be considered a violation of the commandments of God by those whose opinions and authority I respect. Also, sudden and untimely deaths caused by accident or trauma, or those that take the very young, have tragic dimensions missing from terminal illnesses of the elderly. I would like to revisit some of these aspects of dying in future posts.

Still, most of us will die “from one or more diseases that must be managed carefully over weeks, months, or even years, through many ups and downs.” [Ibid., S-5] What have you experienced? In the spirit of creating a more supportive environment for people near the end of life and their families, do you have any recommendations for strengthening social, psychological, and spiritual support?

Comments

  1. I’m so sorry to hear about the difficulties you experienced as your mother slowly died. (And of course that she died at this point in her life.) We as a society and as a medical profession can and must do much better than we do now. I’ll be interested to hear what other experiences people report on this thread. I’m also curious whether palliative care was ever consulted in your mother’s case. My own suspicion is that most of us have gotten confused about what planning is actually important and how best to navigate life-threatening illness. More detailed conversations about which therapies when is unlikely to solve many problems, but careful research and advocacy to help guide patients and families through situations like your mother’s are desperately needed. [Full disclosure: I’m finishing up a book on this topic.]

  2. Thanks for this thoughtful foray into a very challenging thicket of issues that I have yet to face personally. I’m glad for the invitation to start thinking of them now.

  3. I’m sorry for your mother’s death, and the painful experience you had. I hope it doesn’t seem crass, but I find the experience more troubling than the death. That’s probably because I know about mourning the dead. It is a too familiar experience and has a sense of inevitability. The difficult end-of-life experience is neither familiar nor inevitable.
    There is a lot to be said about treatment options, including palliative care. But I’m not qualified and anything I think I know is anecdotal and dated. On the other hand, I do think a lot about decision making, both substance and procedure. By experience and analysis, I’ve come to the view that end-of-life care is not a place for collaborative or cooperative decision making. It’s a place for a one-person rule. There can be lots of input, consultation, information, deliberation, but there ought to be one person who makes the final decisions. Often that will be the self, but when that person is not capable (“not capable” needs some careful thought) there should be an agent who has absolute authority. Not subject to second-guessing, not even a “what would mom really want?” questioning, but absolute stand-in-place-of-the-principal authority. (A story to make the point, at the risk of making light of a deadly serious topic: I was diagnosed with a fatal-if-not-treated problem (treatment worked in my case!) at a time when we were building a house. We had a very sober conversation with our builder, in which we explained that if I was not available, for what was in fact a very cooperative process, my wife had absolute authority for all decisions. Rex looked at me and with a completely straight face said “and if she wants that room painted pink?” to which the real and correct reply was “then it will be pink”.)
    I suggest this not because it will always give the right answer or the best answer. Not because it will make everyone happy. In fact, it is very likely that when you are not that decision maker you will disagree with some of the decisions made. I suggest a one person rule because it is better than the alternatives.

  4. I recently went through this. My father died a few weeks ago.
    The things that went right: He knew it was terminal. He knew he did not want treatment. He had had previous treatment that he was recovering from but then pulminary embolism and new cancer was found. He had read How Doctors Die and he knew to choose no more treatment and he knew to choose to die at home. Hospice was great. My siblings and mother were all helpful and there was almost no disagreement. His oncologist had prepared us for likely scenarios so we could confidently proceed and she helped advise on definite treatment to avoid that would make death harder rather than easier. The hospice nurses were patient and helpful. They seemed to care as much about everyone’s emotional well being as well as his physical. Being at home was awesome.
    The things that were difficult: There were ups and downs that made it too difficult to know if he was actually dying anytime soon (he was still recovering from previous treatment before the terminal cancer had been found). The morphine made him far less mentally competent so we went from him understanding everything to no longer being completely aware. It seemed very abrupt. Everything happened more quickly that expected (two weeks from ER CTscan to death). I still have a sense of unease because it wasn’t supposed to happen so quickly, but I know they can’t really predict it.
    Best decision he made was to take an active part in choosing how to die by following the advise in How Doctors Die. To get hospice and then completely rely on hospice for everything so he could completely avoid ever going back to the hospital. Hospice got him oxygen and hospital bed and any other supply as well as all needed medication. He did not have to go back to the hospital and we handled everything at home so we could be with him. I have precious memories of those days. I would choose this for any of my loved ones or myself.
    We had a DNR as well as medical power of attorney with my mother as the main person and me as a backup so there was clear feeling that we should make decisions based on his feelings about the How Doctors Die article.

  5. Thanks for sharing this personal experience. The title and photo were perfect.

    My father could have died gracefully from pneumonia one February, but the resident on duty refused to honor his DNR order because he hadn’t met personally with the family (!@?#?). Talk about arrogance. I think that that MD should have been responsible for the cost of dad’s care for the remaining 8 months of low-quality life as Parkinson’s continued to take away his personality and cause him great emotional distress as his body deteriorated.

    When my father-in-in law died, my husband put his cell phone on speaker so that his sibling in another state could hear what was going on. This seems grisly, but I can see for that some it might be a positive thing, to be there a little bit.

  6. J. Stapley says:

    Important and moving stuff, Peter.

    “I can’t live like this”

    This was like a punch in the gut reading. I can only imagine what this was like for you. I’m sorry.

  7. Beautiful and so important, Peter. Thank you.

    Both my father and father-in-law died last fall, within two months of each other.

    My dad died at home, after a steady decline when he decided it was time to go. He had worn out his body working very physical jobs for decades and overseeing every aspect of our home life so my mother could live comfortably in her own world (schizophrenia, controlled by medication), and it simply was time to go. She would be taken care of by two of my siblings, and he was worn out. He spent the last couple of months in his bedroom, eating little and dying as he wanted. It was hard in many ways on my brother and sister in the area and their families, but it also was the most precious time they had with him. He renewed his temple recommend less than a week before he died, specifically because it meant a lot to him to have it be current when he moved on. (A member of the Stake Presidency drove two hours to do it in my dad’s home when he heard about the situation. I will honor that man forever.) It was hard, but it was holy – and he never had to spend a day in the hospital, which was important to him.

    My father-in-law survived a major stroke in the Dominican Republic while serving his fourth mission with my mother-in law. I should say his body survived the stroke. He had a DNR order, but it was not honored in that country – which turned out to be both a blessing and a curse. After a few hellish weeks, my wife’s family was able to arrange to have him flown home, where he survived for one more week with his extended family able to visit and say goodbye.

    My wife did in-home care for the elderly for a few years, and we both have come to the conclusion that, overall, where possible, it is better to die at home in the middle of one’s own life than in a hospital in the middle of other people’s jobs. The most important things are knowing what is desired and refusing to accept the standard answers that are programmed into our medical system. It’s okay to let someone die on their own terms, and it’s okay to let it happen naturally and not prolong life. There is deep pain in that decision, but there is such deep joy and wonder, as well.

  8. Deborah Christensen says:

    As a home health and hospice nurse I have 10 years of experience with this topic. You asked about how to support patiences and their families at the end of life. Right now, if a patient wants to discuss this subject with their doctor, the patient needs to pay out of pocket for the doctor’s time. Since many elderly patients are on fixed incomes this never happens. So members of Congress and interest groups are trying to get Medicare to pay for a one hour visit every year for all Medicare patients. Here are the documents for this bill https://www.congress.gov/bill/113th-congress/house-bill/1173 and http://www.blumenauer.house.gov/images/pdf/Blumenauer-Letter-to-CMS.pdf. Unfortunately this type of legislation was billed by Sarah Palin as a “death panel” back in 2009 and subsequently removed from the ACA.
    jks mentioned how they discussed the issues with their hospice nurses and oncologist. Medicare pays for the time talking with patients that are on hospice; but only hospice patients. For all other patients there is no discussion between doctors and their patients on these issues. Instead I, as the nurse, have pieces of the discussion when I have time. I encourage my patients to talk with their family members and doctors about the issues. I give them facts and details to consider; but nothing happens. Doctor’s offices can not stay in business by providing free counseling regarding future illness.
    Of course legislation will not fix all the problems mentioned in the post or all the comments. But a once-a-year discussion will allow some of these issues to be resolved. In other words legislation can help all patients and doctors adopt the hospice experience for all patients.

  9. “it is better to die at home in the middle of one’s own life than in a hospital in the middle of other people’s jobs”–put very well, I think. My dad is recovering from chemotherapy and getting stronger, which is a huge blessing. This is probably the time when we ought to talk more specifically about all of this. Thanks for the post.

  10. Bless you, Pete.

  11. Phenomenal contemplation, Peter. You’re a great example.

  12. I’m also curious whether palliative care was ever consulted in your mother’s case.

    I was out of the country for all but three weeks of the ordeal so I don’t know all of the details, but a lot of people wanted her to get better even after she had had enough, so she actually spent four of her last five months in rehab facilities. And in her last month at the sub-acute care facility family members initiated an evaluation to see if one last effort could be made, which landed her back in the ICU. So as far as I can tell, palliative care was not a priority in the thinking of many of those who believed they were advocating for her.

    There can be lots of input, consultation, information, deliberation, but there ought to be one person who makes the final decisions.

    I can endorse that. In our case, I’m not sure if a formal designation was ever made, but in practice decisions ended up being made at various times by three people, which in retrospect was pretty unwieldy.

    He did not have to go back to the hospital and we handled everything at home so we could be with him. I have precious memories of those days.

    I’m glad you were able to make the most of a difficult situation. When we talked about moving my mother home (as I mentioned above she had been in rehab, though steadily declining and eventually refusing treatment), we entertained the idea that it would help her get better, but the doctor (rightly, I’m sure) didn’t, nor that the long ambulance ride would do her any good. Best to make that decision earlier on, I suspect.

    My father could have died gracefully from pneumonia one February, but the resident on duty refused to honor his DNR order because he hadn’t met personally with the family (!@?#?).

    I’m sorry to hear that, and I share a sense of your frustration at the senselessness of prolonging low-quality life at great cost in contravention of explicit wishes.

    it is better to die at home in the middle of one’s own life than in a hospital in the middle of other people’s jobs.

    Indeed, Ray. One of the most disconcerting experiences was touring a nursing home the day the hospital told us they were discharging my mother that evening. Of course the tour guide put on a smiling face, but the misery there was palpable. In the end, we did not have to go that route, but if there was ever a moment where I felt like I knew what my mother absolutely did not want under any circumstances, it was then.

    Instead I, as the nurse, have pieces of the discussion when I have time. I encourage my patients to talk with their family members and doctors about the issues. I give them facts and details to consider;

    Bless you for your efforts. The death panel nonsense is an unfortunate hijacking of a pretty simple yet promising idea.

    And thank you, RJH and john f.

  13. And to Jason K. and J. Stapley too, of course.

  14. “There didn’t seem to be an immediate reason to believe that the recommended procedure—intended to ensure years of cancer-free life—would actually precipitate my mother’s death.”
    But maybe we should be a little more prepared for that outcome…
    My three family members who have died in the last few years two died by what you might say as a result of continued operations by doctors and the other died naturally(so to speak).

    The two that died in doctors care may very well have turned out better if different (non surgical) approaches were taken. Both would have died at some point (one was a young mother the other a 70yr grand father) in the mid to short term, but the death was in some degree hastened by the operations.

    Like your observation, though, their lives were probably prolonged from early operations. It almost feels then like gambling, sometimes you have to know when to walk away (from just one more operation after you’ve had a good run) in a sense. But unlike gambling, if you walk away from the gaming table, you don’t lose your shirt, while walking away from the operating table can still ultimately kill you…

    At some point, I’m not sure the tragic tubes etc are avoidable if you’re going to have an op because once things go bad, I expect doctors to do what they can to give life a chance, not just let your heart run out on the table. Plenty of people have tubes in them for months and pull through, so why should you give in right?

    It’s a hard choice to be confronted with, and in most cases I can imagine I feel so inadequate to judge the right course.

  15. ” a member of the Stake Presidency drove two hours to do it in my dad’s home when he heard about the situation. I will honor that man forever.”

    This reminds me of my gandfather in his last days requesting the bishop give him a blessing. The bishop, delegated it to the home teacher. The HT, naturally, never came. I like your version of “to the rescue” better.