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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?