Discussion Post for THE LOST ART OF DYING, Chapter 4, Pages 81-90

Not only did hospitals entice with medicine and procedure; they also offered a welcome respite to families and community members saddled with the burden of caring for the sick and dying.

Page 82

My patient Diana died in the hospital but still experienced and art of dying, an ars moriendi. She outlived her prognosis by years and thus had ample time to consider what preparations would be necessary for dying in her own home. Despite the best planning, she ultimately found the hospital a more hospitable place to die.

Pages 85-86

Despite this, there exist many sound reasons to avoid hospital dying.

Page 86

Figuring out how to die at home requires planning.

Page 90

Dr. Dugdale helpfully considers many of the pluses and minuses of dying at home and dying in a hospital. Several of your comments on last week’s discussion post brought up difficulties and challenges that can make dying at home undesirable both for dying persons and family members. In the first passage I quoted above, Dr. Dugdale recognizes how such difficulties partly explain why more and more people die in hospitals. This development, as Chris pointed out in a comment in last week’s post, is similar to modern trend of more and more people being born in hospitals. I found that to be a fascinating comparison. I think most of us who, with Dr. Dugdale, find the trend toward hospital deaths somewhat troubling, do not find the trend toward hospital births troubling in the same way. I think there are good reasons for that that which we have discussed and will further discuss as we read through this book. I think that comparison is fascinating because it invites us to consider how those two phenomena are the same and how they are different. One way they are different is that hospitals have labor and delivery units to assist those who are birthing, but they don’t have units to assist those who are dying. Or do they?

It strikes me as curious that Dr. Dugdale gives much consideration to the pluses and minuses of dying at home and dying in a hospital, but does not consider the merits dying in a hospice facility. She mentions home hospice in this chapter, but makes no mention of hospice facilities. Dr. Dugdale and I have both lived in New Haven, CT and New York City and are familiar with many health care facilities in both places (albeit in different ways as a physician and a priest). I am aware of several excellent hospice facilities in those areas: Connecticut Hospice near New Haven, Rosary Hill in Hawthorne, NY, and Calvary in the Bronx. I’m sure Dr. Dugdale has at least some familiarity with these places and others like them. I don’t know why she doesn’t consider this option in her book.

It seems to me that hospice facilities provide dying persons and their families many of the desirable features of both the home and the hospital. They are more welcoming to visitors than hospitals and focus of comfort rather than cure. At the same time, they provide the expert medical care, adequate space, and equipment that may be lacking at a dying person’s home. I’m sure the expense is often considerable (though Rosary Hill is free for the cancerous poor), but they are surely less expensive than most hospitals. I don’t know how the expenses of hospice facilities compare to the costs of outfitting a home to meet a dying person’s needs. I have a fair amount of experience ministering to people in hospice facilities, and more experience with terminally ill patients in hospitals who are considering discharge to a hospice facility. That seems to be a good alternative for many people. But perhaps that is a particular characteristic of urban areas with high populations. Maybe hospice facilities are not an option for dying people and their families in most parts of the country?

I said (self-questioningly) that hospitals don’t have units to assist the dying. I do not know of any hospice facility that is part of a hospital or attached to one. Mary Manning Walsh, the nursing home where I and my brother Dominicans provide pastoral care, has a hospice floor that is connected with Calvary. And many hospitals do provide palliative care, which aims to relieve symptoms and stresses associated with serious illness. The goals of palliative care are similar to hospice care, but palliative care in a hospital can coincide with curative treatment. For that reason, palliative care in a hospital may do little to insulate patients from the problems associated with what Dr. Dugdale calls the “rescue fantasy.”

Several weeks before he died, Jesse taught a master class from the hospital bed in his living room. He recognized that this would be the last opportunity to gather his students together, and in true ars moriendi fashion he used the occasion to exhort them.

Page 88

This aspect of the ars moriendi, the final exhortation, teaching, or imparting of wisdom, is one we have not yet considered. I would be curious to know if you have experienced some form of this at the death of your loved ones? I have not experienced that personally, but I do experience it as a Dominican. We recite a prayer every week called the Spem Miram, which refers to St. Dominic’s death-bed promise:

V. O Wonderful hope which you gave to those who wept for you at the hour of your death, promising that after your death you would be helpful to your brothers. R. Fulfill Father what you have said and help us by your prayers.

7 thoughts on “Discussion Post for THE LOST ART OF DYING, Chapter 4, Pages 81-90”

  1. Vera – Currently, as a full time caregiver for my husband, I must admit that after several hospitalizations with serious set backs and also emergency room runs during covid..hemorhaging…then transfusioning, and everything in between..left ventricle failure, right ventricle etc. ..I have learned to acccept/acknowledge the “welcome respite” provided by facilities…rehab., hospital, etc. …and so I “go on”.caretaking..waiting for the next shoe to drop. ! The book distinguishes between Birth units/labor and delivery versus the very different ” hospice units” or “end of the hall ICU /last bed in the neuro acute room “reserved” quietly or silently, and not spoken about…coincidentally for those unlikely to find their way back out the front door…..despite the hope false or otherwise that my extended family and others in similar situations might have had that somehow things would get better,(the rescue fantasy) or that an appropriate hospice would be found which would be able to provide the right place to “pass” other than in the cold neuro ICU. …even though it was evident to anyone paying attention that the patient could not/would not be well enough, even with medicinal help, to make it to a dedicated hospice; there would be no transporting and all that would be inovlved in that, no homecoming, no chaise lounge on the deck……the time was running out…the clock was ticking . I particularly enjoyed /appreciated the St Dominic’s death bed promise prayer..I had .never having heard it and it is powerful…….As a family, steeped in Irish tradition and Catholicism, we learned from our parents to use such expressions as “when I’m gone”…in conversation, or with a smile and a laugh, about a song, or a story, etc., .but, the closer that reality gets/got, the less it is /was used!! or acknowledged. Grateful that my sister and I had some time….a day or so….a week or so before….to “sing” some songs together in the neuro ICU room (she had a beautiful voice, even then, low as it was) Her end came when her family was out “looking at hospices”…I must explain that part of that involved “location” due to their home’s location and the hospital’s far travel …and whether something on Long Island or in the “city” would be better…..(I was not a part of the hunt, gratefully….).I was at work….I couldn’t help but remember this was the same group who wanted to know what the “room” looked like some fifty + years earlier when their son had a BT and the chaplain was kind enough to offer them the permission to “stay over”….this was unheard of 50 years ago….I was there, ..I was just so happy that their 11 year old, my godson, and nephew, would not have to be “alone”…it never occured to me to even ask about the room….but different strokes for different folks~~now, same group..back out again, “looking” for a hospice…..I tell the story as it relates to how important PLACE is to where we or our family or community believes it is appropriate to “PASS”….to most people. To some people, it matters dearly…and to others,not so much…

  2. Hospice is indeed a wonderful resource to the dying. Hospice eased my sister’s passage in our home and helped to make my mother comfortable at an assisted living facility. My father died in the hospice outside of New Haven referred to by Father Jonah, and as it was the first time for me that death became searingly real, I was grateful to the gentle care that hospice provided. My experience is that hospice does provide excellent preparation for an individual’s physical death, and is very important for the care of the individual’s family. The follow up that Jacqueline refers to is also excellent and the multi-disciplinary teams hospice provides are a real asset to the dying and their families. However, I must say that I strongly agree with Linda Dickey and her comment that “what happens doesn’t happen in the room.” The departure from this life seems to me to be a very private affair between an individual and God. Our role as loving bystanders is important, but ultimately, we cannot participate in this most intimate of divine moments. Father Jonah attended to my mother shortly before her death, and though she was only hours away from the inevitable, she was capable of acknowledging his presence and it comforted her greatly as she prepared for her next life. I will be eternally grateful to Father Jonah. My mother’s ultimate journey was very private as are all our departures, but spiritual comfort Father Jonah provided in the company her loved ones was a precious part of preparation for her transition to her life to come.

  3. I have not had the experience of an encounter like Jesse’s final master class, but I have had two people close to me face their impending death (one from misdiagnosed metastatic cancer/one from congestive heart failure after years of dementia) in ways that were both instructive and beautiful, albeit in very different fashions. The first refused heavy pain medication during the day, because he wanted to be able to interact with others in a more meaningful way than the drugs would allow him in the time he had remaining. The other, when I would talk about funeral planning in his last month would ask “whose funeral?” but, when reminded that it was his own, would consistently respond with “I am saying my prayers” — and I would reassure him that was all he needed to be doing.

  4. Hi Father et al. My dad died at home with hospice care, and my mom died at her nursing home with hospice care. In both cases their deaths were “attended,” painless, and “good,” though in my mom’s case, she had Alzheimer’s, so it was hard to know what she understood. That said, I worked as a volunteer at an in-hospital hospice unit at Bellevue (that is no longer there), and I always thought it was a good place to die. In fact, most patients didn’t die there: they were VNS patients who came in to be stabilized on meds or to give their families brief respite. The care was amazing: really loving doctors, nurses, aides, and support services like art therapists and musicians, etc. It seems like the most important thing is to have loving caregivers wherever you are when you are getting close to death. But again, at the moment of dying, in my experience (limited), it doesn’t matter if a living person is with you: what happens doesn’t happen in the room (or so it seemed to me). Accompaniment seems to be important for those who keep on living (to avoid guilt)…notfor those who have gone ahead of us.

  5. The best laid plans for dying well often go astray once dementia is introduced into the equation. Anyone who has ever cared for someone with dementia knows the outcome is an undulating downward curve. You lose a little bit every day, so every day becomes a dress rehearsal for the drama of dying. As co-morbitities pop up, you have to decide what to treat and what to manage. Which illness or treatment interferes the least with quality of life? When terminal diseases progress, which illness leads to the least unpleasant death? Most of us are not prepared to make these decisions.

    I always viewed caring for my loved ones as a privilege. Beware that caring for someone with dementia will break your heart and break your bank account. In 2018, the Alzheimer’s Association estimated the lifetime cost of Alzheimer’s and dementia care was a staggering $341,840 per person, and much of that is not covered by insurance. In addition to the financial cost, there is also the lifetime opportunity cost due to the extensive time demands of caregiving.

    We have discussed so many reasons why seeking institutional help may be necessary. With dementia, safety and socialization concerns are high. Common household structures like gas stoves and staircases are very dangerous. Security is mandatory, because most early- to mid-stage dementia patients are wander risks. Late-stage patients require total care, which often necessitates at least two caregivers at a time, medical lifts, special bathing equipment and much more.

    In addition to losing memories and abilities, most people with dementia lose all but the very core of their social circle. They are not capable of putting the effort into maintaining friendships. Acquaintances get frustrated with what they get out of the relationships. Often dementia patients have outbursts or odd behaviors that are misinterpreted by people who do not understand what is happening with the patients. In late stage, many dementia patients lose the ability to speak. Some friends and family members are just not comfortable interacting with special needs patients.

    Memory care facilities provide an atmosphere of kind acceptance from staff, family and friends who have learned how to foster positive interactions with the memory impaired and how to redirect and soothe them when they are upset. Recreational activities are specialized and social opportunities are encouraged.

    As wonderful as that sounds, you will realize quickly that institutions do not have the staffing necessary to adequately care for most dementia patients. Care becomes a team effort, and it can be stressful and exhausting for the primary care givers. I learned quickly that it was not uncommon for caregiving spouses to pre-decease the patients.

    My mother suffered with Lewy Body Dementia for nearly two decades. In the early days, people would see us together and comment how nice it was that she had a daughter to help. In the later days, they told me how nice it was that I could care for my sister! Despite the blessing of being able to serve those you love, caregiving takes its toll.

  6. I was really struck by Dr. Dugdale’s description of the health of a wife caring for her husband with dementia: an illness in many ways made more difficult because the body can remain strong for so long. I cannot speak from experience on an issue of this sort; but I hope that the medical community is learning to build the kind of support that caregivers need, lest we risk allowing the health of caregivers to deteriorate alongside that of the sick. Hospice care (often disease-specific hospice care) will be extremely important for these diseases until we have better treatments.

    I can’t say I have experienced that end-of-life passing on of knowledge: I think I have heard it summed up in a eulogy, but I think to approach death while offering a final lesson in life requires an awareness that I rarely see. I certainly hope to encounter it more. It would be a great honor.

  7. Hospice care and palliative care are similar and different. Both types of care are offered to anyone with a serious illness, but hospice care is available only to those who are generally expected to live less than six months. Both will focus on pain and symptom relief. However, curative treatments are generally withheld from hospice patients unless they are associated with symptom relief. Payment for both varies by insurance plan, but Medicare usually covers all hospice charges as long as the patient continues to meet the criteria (meaning that the length of insurance-covered hospice care can be extended upon medical certification of necessity). Both can be provided in homes, in assisted living facilities, in nursing homes and in hospitals. Hospice care can also be provided in hospice facilities. Institutions often have hospice relationships with certain providers, so it is wise to check affiliations if you have a specific provider in mind. Some hospice facilities have limited capacity, so timing is often critical in securing acceptance into a facility. In the case of Mary Manning Walsh Home and Calvary Hospice (mentioned by Father Jonah), the 18-bed Dawn Greene Hospice unit is reserved for patients in need of short-term care. Residents in need of longer-term (months not days) hospice care can opt for Calvary at Home hospice care. In that case, “home” is defined as your room at the nursing home. The hospice team works with the medical and nursing staff at the facility to provide quality end-of-life care. In addition to comfort care, hospice care can address the emotional and religious needs of the patients and also help the families prepare for end of life. Patients and families are typically assigned a hospice team, including a doctor, a hospice nurse, a social worker and a spiritual advisor. After the patient dies, the family is also offered grief counseling.

Leave a Reply

Your email address will not be published.