Discussion Post for THE LOST ART OF DYING, Chapter 4, Pages 71-81

Does it matter where we die?

Page 71

As Dr. Dugdale suggests, there are several ways this question could be understood. Does it matter where out bodies are immediately after our deaths? Does it matter where are bodies are laid to rest? Does it matter where we spend the last weeks/days/hours of our lives?

Regarding the questions about the location of our bodies after death, the answers in the Christian tradition are somewhat mixed. Christians inherit Jewish beliefs about the resurrection of the body and the importance of burying the dead (one of the corporal works of mercy). Such beliefs form the basis of longstanding Catholic teachings about the importance of keeping bodily remains in tact and burying them in consecrated ground. Unlike Jews, however, Christians have never had an earthly homeland or promised land.

I was blessed to be able to travel to the Holy Land a couple years ago. During the week I was there, I went to the Mount of Olives a couple times. There are several Christian sites there associated with Jesus’ entry into Jerusalem, his prayer in the garden of Gethsemane, and his Ascension. There is also a large Jewish cemetery on the Mount of Olives in which graves are positioned such a way that, when they rise from the dead, the first thing the Jew buried there will see is the city of Jerusalem.

Christians have no earthly city. In his Confessions, St. Augustine tells a story in which he and his brother are speaking to their mother, St. Monica, who is anticipating her approaching death. They are in Italy. When the brother suggests that, after she dies, they should take her body to her North African homeland, Monica rebukes him for expressing such an earthly thought. She declares that the location of her bodily remains is of no account.

The question about where we spend our last days is surely more about people than places. But places do matter. Home is a place of familiarity and belonging where we might gather with our loved ones in greater comfort and peace. The hospital, on the other hand, might give us the security of being cared for by competent people with ample recourses. Most people, as Dr. Dugdale relates and my own experience confirms, would prefer to die at home, which begs the question . . .

Why, then, do the majority of Americans die in institutions, such as hospitals, nursing homes, extended care facilities, and hospices? Why does only one in five Americans die at home?

Page 73

There are certainly many answers to these questions. There are sociological answers related to life expectancies, family structures, residential preferences and patterns, retirement policies and practices, access to needed care, and so on. There are also answers relating to how we think (or don’t think) about death. That is really the subject of this whole book. Suffice it to say here that our failures to give thought to and prepare for our deaths while we are healthy often continue when we are sick. We may not think about death – we may not be willing to think about it – until it’s too late to anything but die in the place where we had been clinging to life. Added to this lack of consideration are the hopes and fears of dying persons, those who love them, and the professionals who care for them. Those feelings are natural and understandable, and the actions they lead to are no-doubt mostly well meant, but they often lead to deaths in circumstances that are not what anyone wanted.

Physicians try to follow the principle that the benefit of the benefit of the intervention should outweigh the burden. This calculus endures until death looms, and then a compulsion to rescue overtakes rationality. It no longer matters whether a medical intervention causes harm and produces poor outcomes. As rescuer, the doctor feels duty-bound to save the patient.

Page 80

The physician’s compulsion to rescue fuels the patient’s burning desire to be rescued, which again strokes the doctor’s rescue fantasy. The result is precisely the sort of medicalized dying described on Chapter One, when Amit and I attempted to resuscitate the dying Mr. Turner three times during the night.

Page 81

I find it fascinating to read this from a doctor. I have long suspected that these kinds of feelings and thoughts motivated doctors. But, of course, I am not a doctor. So it’s fascinating to read this from someone who has thought and felt these things herself. I wonder whether Dr. Dugdale has memories of specific instances when she felt the tug of this “rescue fantasy” and struggled to resist it? Perhaps we could ask her when we speak with her in the coming Spring?

I have also suspected that this compulsion to save patients from death is related to the conviction that salvation from death is the only good outcome. Dr. Dugdale writes that, in the grip of this compulsion, “it no longer matters whether a medical intervention . . . produces poor outcomes.” But if the only good outcome is the preservation of bodily life, that mentality may be understandable. If every other course of action leads to the bad outcome of the patient’s death, a doctor might want to attempt anything that has the slightest chance of producing the good outcome of survival. Death, however, is an inevitable outcome. And allowing a patient to die in desirable circumstances can be a good outcome when compared to the alternatives. More than that, at least according to Christians, allowing for a peaceful and well-prepared death can be a beautiful outcome. (Here is an article I wrote about characteristic human responses to death that you might find relevant in this connection.)

When this dynamic plays out between doctors and patients, family members sometimes feel betrayed. They suspect the doctors of having been dishonest with them, preventing them from having the kind of closure they had wanted. This experience has been invoked as a reason to promote physician assisted suicide. Since medicalized dying so often prevents people from dying as they wish, the thinking goes, wouldn’t it be better to ensure that we die as we wish by predetermining the time and place of our deaths? (Here’s another article I wrote in which I applied the considerations of the article linked above to this particular claim.)

8 thoughts on “Discussion Post for THE LOST ART OF DYING, Chapter 4, Pages 71-81”

  1. I feel many things about this chapter
    First of all Dr Dugdale speaks of the importance of our homes where at one time “the home made provision for both cradle and coffin…how intertwined are homes are with our very being. Imagine generations of family members inhabiting the same place.” She goes on to then to ask why the majority of Americans die in institutions. “If we feel most comfortable in our homes; why then would we want to die in an institution.” I believe she has answered her own question. At the time when people lived with their extended family, all could be cared for- the young couple had grandparents living with them who helped with child care and in return the elderly were surrounded by family – which might include their children, grandchildren and maybe the sprinter aunt and uncle. So at end of life people didn’t have to die in an institution. People were born, lived, died and were waked at home. I’ve always had great nostalgia for movies like Moonstruck and Meet Me In St Louis for that very reason. Even when people first moved to urban areas, families often lived on the same block or in the same apartment house. I know that’s how my neighborhood in Washington Heights was in the 1950s. But then people began to feel they needed their privacy and much was lost. Apartments were broken up into much smaller units. “…small city apartments lacked space for the sick.” Families had to hire childcare workers and the elderly had to hire home care providers. Our homes now were filled with strangers to care for us. Therefore, the move to an institution for birth, illness and death no longer seemed to be such a radical idea. So no longer did do we find that only
    “the most destitute resorted to going to hospitals to die.” In fact, before the hospice movement in the 1970s most of us were dying in hospitals.

    When I first became a nurse in the 1970s, the family physician knew his or her patient well and, in many instances, made medical discussions for their patients based on what they felt was in their patient’s best interest. They based this on the principle that the “benefit of the intervention should outweigh the burden”. They would decide on the administration of pain medication and the necessity for Invasive procedures. But then the public began to feel they should be more in control of their own health care. Patients began demanding pain medication and felt they, at all costs, should be pain free. Doctors capitulated, inspire of their better judgement. And the overprescribing of opiads led to the addiction of many patients. I believe that patients desire rescue. And this desire for rescue often “overrides rationality. It no longer matters whether a medical intervention causes harm and produces poor outcomes.” I believe it is often the patient who demands this – “ …patients rarely want doctors who take the cost-effective, risk balancing, rational approach.” Just like we saw with Mr Turner’s family who insisted on multiple resuscitations. And again doctors are often forced to capitulate in spite of their better judgement. And our litigiousness society reinforces this. In general, I do not believe doctors are on a power trip. I believe they truly want to first cause no harm, but are often caught between the patient’s desire to be rescued and what they believe is medically appropriate based on the patient’s disease progression. Of course, it goes without saying that doctors go into medicine because they want to fight disease and rescue their oatients when and if that is possible.

  2. VERA – Again, most people do not think about it! As mentioned earlier , as a former practicing attorney, people would rather do anything than prepare for death….or incapacity…which of course as we live longer is a lot more likely to happen sooner than death !! The need for care and the security that brings to the person is huge…which in turn leaves loved ones feeling guilty if they try to change their idea…You may have a preference, but you may not get it. ..Safety plays a part, too, as elderly and frail requiring 24 hour care, with cognitive decline in many and so forth. Very difficult to rely on someone besides yourself!! rely on to show up on time, care, help, follow directions, etc.
    Medical professionals practice defensive medicine which is totally understandable in a litigious society such as ours….The sentence that says that patients believe “salvation from death is the only good outcome” is very significant……as most people do not look beyond the
    here and now…..during their lives, much less, as the days grow short, in my opinion… even devout people can get squirmish towards the end…which of course, leaves the door open for physician assisted suicide and medical dying…a hard call…as there are valid thoughts on both sides, particularly in certain circumstances……but, of course, like 3D printeries, this can be put to terrible use!!!! as well as other use. To add to the mix is the cost of continuing care…at home….in a hospice…hospital…facility, etc. ……….soo much to consider!! no easy way out!!! tongue in cheek!! ..respectfully submitted..

  3. Many years ago, when the hospice movement had just come here from England, my father wanted to die at home, and hospice nurses made that possible. But my mother did most of the work caring for him, just as if they were living in the 18th century back in Italy. It was wonderful for him (and us children), but very hard on my mother. About 15 years later, my mother-in-law also chose to die at home, and she was able to hire caretakers to help her through the long nights. We family members were able to sit with her for long periods of time to pray with her, talk of the past and future, and say goodbye. It was wonderful, but if a dying person has no one at home able to help him/her through to the end, as my mother was with my father, or hasn’t the financial means to hire caregivers around the clock, like my mother-in-law, it is better to go to the hospital, or better still, a hospice facility for one’s final days. Modern medicine has made dying at home somewhat easier, but it’s not easy, not by a long shot.

    And I agree that one’s attitude is all-important. Is the person prepared and ready to face death? Or is he/she still hoping to be rescued by the doctors? So many medical “miracles” have pulled so many people back from the brink of death that it is no wonder we all hope to be “rescued” by modern medicine. But one truth that this COVID-19 pandemic has taught us is that death can come quickly, with little to no chance of rescue by doctors. Even the doctors and nurses have been flummoxed by the rapidity of its course in some patients. And the isolation in which many COVID patients have died is truly frightening. We need to think now and then about our deaths when we are healthy, to remind ourselves that we too are mortal. Quarantining quietly at home has made such thoughts more common, at least for me. I don’t want to be so busy with life that death seems totally absent, until it isn’t, like the speaker in Emily Dickinson’s poem: “Because I could not stop for Death, he kindly stopped for me.”

  4. We as human beings are programmed to try to survive. Suicide is a sin. We seek medical care and allow ourselves to be admitted into hospitals when we are told that we will not survive at home. We hope for more time living and being with our loved ones. We have been taught to pray and hope for miracles.

    Most people do not have the luxury of doctor visits at home or the ability to setup their bedrooms in the manner that they would have in a hospital. I understand that dying a home might be nicer but that takes planning and communication that most people don’t have the opportunity for. We have hospice facilities, but those conversations are either too soon or too late. It would be nice if patients and doctors could communicate more about the patient’s options.

  5. Father Jonah and Dr. Dugdale both raise the question of what location is best for one’s earthly end. Hospitals are full of frightening machines and strangers, albeit technically proficient ones. However, as Desiree has noted, caring for a seriously ill loved one at home without the proper medical knowledge and technique is frightening at best, terrifying at worst and may result in needless pain or distress for the departing. In my view, there is no easy exit, a hospital death may be particularly lonely, but death at home is not ideal either. I would like to suggest that the physical location of one’s death, though important, is less important than the psychic and spiritual location of one’s approach to death. I refer to Psalm 139: “Where can I go from your spirit, or where can I flee from your face? If I climb the heavens, you are there. If I lie in a grave, you are there. If I take the wings of the dawn and settle at the farthest limits of the sea, even there your hand would lead me, your right hand hold me fast.” I have seen loved ones die at home, in hospice, in the hospital and in an assisted living facility. Each location was right for their particular medical condition at the time. The comfort of their passing was less dependent upon their current environment and much more on their preparation for death. I think the message of Dr. Dugdale’s book, that is of facing one’s finitude, is the right one. It is our interior spiritual landscape that can ease our way, an external environment can only soothe or disturb us so much. To wit St. Theresa of Avila: “Let nothing disturb you, Let nothing frighten you. All things pass away: God never changes.”

  6. I was raised by my mother with the conviction to be my own person; therefore, I belong to no one. In that regard, the concept of belonging to your home–as the peasant belonged to the Black Forest farmhouse–seems completely foreign. Yet when I consider my father’s later days, that notion seems perfectly natural. He moved back into the house where his parents spent their entire adult lives. Despite the fact that his parents were no longer there, he left everything exactly as it had been. As such, he resumed his rightful place as a fixture in that diorama. He belonged in that house, and he belonged to that house. After his death, I searched through over a century of personal effects. Tucked away on a bookshelf in the attic and covered with a thick inch of dust were the texts my grandparents used as their lay guides for living well. As a health and fitness professional, I was fascinated to learn the home remedies and medical advice dispensed so long ago. There were scientific explanations and graphic pictures of maladies, suggestions for proper hygiene, illustrations of basic exercises and recipies for good nutrition. Although the technical information was dated, one very clear message emerged. Healthy living is and always has been based on temperance and moderation.

  7. My initial thought on dying at home went straight to another, somewhat opposite, common idea: giving birth at home. I won’t offer a right answer on that, I’m in no place to weigh in, other than that the idea offers some comforts: familiarity, lack of stress, a “natural” environment, proximity to community – and that’s how it’s been historically. But there’s always a chance, however small, that somewhere in the process the mother, baby, community, will need to move to the hospital for safety. Ultimately, safety will beat out familiarity.

    But, as Dr. Dugdale makes clear, it’s really hard to have that conversation when everything is still going well. It takes a lot of humility from everyone involved. We might think it would be different with death, rather than bringing in new life: after all, what is the role of “safety” in death? There’s no role for safety (apart from comfort, which is still very important.) So familiarity ought to win out, but it clearly doesn’t. In one sense, that’s because most people aren’t expecting their hospital admission to be the “ultimate admission” as Dr Dugdale states.

    In another sense, perhaps we ourselves underestimate our reliance on others at the time of death: a good hospital has experts in death, which most of us are not, ever since death became a medical condition. Perhaps the dying & their community find comfort in that “safety net” even if the ultimate end is the same. I wonder if the idea of dying at home is mostly only popular in a quick survey where one checks of boxes without much thought. Most of us weren’t born, married, graduated, promoted, became parents, went on vacation (except this year), or many other of life’s milestones, at home. There’s a place for everything. and perhaps that’s alright?

  8. One reason so few people die at home may be because relatives or friends do not feel competent to care for a seriously ill dying person or fear that they will hasten death by doing the wrong thing. Hospice facilities address this with homelike rooms and relaxed visitor policies that allow family and friends to be with and support the dying person emotionally while skilled medical professionals are just down the hall. There’s usually a peaceful atmosphere that is more like a home than a noisy, clinical hospital.

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