Gone From My Sight, Part II

[This is a companion piece to a post I wrote in August 2023.]

The second week of October, I arrived in Washington state to help my dad take care of my stepmom L in what I now know was her final six weeks of hospice. She was battling pancreatic cancer – one of the scariest and most intimidating illnesses imaginable.

I don’t think of her as having lost a battle with cancer, but sadly, she did die in mid-November. In the weeks leading up to her death, I was forced to confront my own previous assumptions about the home as proxy for a ‘good’ death and my shock about how much of hospice care in the United States falls directly to a patient’s family.

What is hospice?

Before L’s illness, we as a family knew very little about hospice and how it worked. Now we know hospice is the last stage of palliative care.

Palliative care is meant to help a patient live as fully as possible as they undergo treatment by managing their symptoms. It is appropriate at any stage during a serious illness. Bringing in palliative care doesn’t mean you’re ‘going to die.’ People often confuse hospice and palliative care because let’s face it, it’s all scary, especially in a society that’s incredibly adverse to illness, death, and bad news (and bad feelings?) in general.

One way to think about it: while all hospice is palliative care (symptom management), not all palliative care is hospice (end-of-life). A patient enters hospice once no further curative treatment is indicated and they have six months or less to live. The primary goal during hospice is comfort care. In other words, the patient isn’t going to get better when they enter hospice and you just try to make them as comfortable as possible.

And by ‘you,’ I mean hospice nurses (since the patient is no longer seen by doctors), and caregivers, whether paid or informal. And there are others – social workers, sometimes, and bath aides, and maybe people who do chores around the house. But a lot of this depends on how much money (or long-term care insurance) the family has to engage paid care beyond the little that Medicare covers, and so, it might be primarily family, 23 hours a day.

So of course, we as a family also learned a lot about the practical and emotional aspects of providing comfort. Before L got sick, I vaguely thought dying people donned satin pajamas and lounged glamorously in their own beds, becoming weak and passing away in their sleep while a team of nurses bustled around and tearful family members sat wondering what to do. I mean, maybe not exactly, but something close to what you see in the movies? I had yet to witness up-close the slow hell cancer wreaks on a person’s body. And I certainly did not have any context for how hard it gets to take care of a dying person as they lose their functionality and decline in their ability to meet their own basic needs.

It’s a a very difficult thing to watch someone you love struggle through an illness like terminal cancer. It’s one thing to do so as a family member; it’s another to do so through the paradigm of informal caretaking. Although caretaking can be an honor, it also takes people out of their roles as family members and shifts them into the roles of patient and caregiver. This can change the interpersonal dynamics at a time when you’re already watching your loved one themselves change so much.

At a time when you want to be sitting and holding your loved one’s hand. When you want to be saying comforting words, or letting them talk, if they’re able, while someone else deals with their medication, and their toileting needs, and all the decisions you don’t feel qualified to make.

Instead what you might be doing is washing the sheets for the second time that day, while trying not to burn dinner, making a mental note to take the dog on a walk to the mailbox, pay your bills that are about to come due, make sure you aren’t running out of x, y, z medical supplies, and – oh crap, is that the intercom button going off again?! It all becomes an exhausting blur. As a family caregiver, you can’t get away from it, and simultaneously feel like you’re missing everything. You can be frustrated and even angry – not necessarily with your person, or at least not in my case, but with the situation that is taking them away.

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Home as proxy for a good death

When people say they want to die at home, it is in line with modern cultural assumptions that a home death is always the best option. Being at home, in your own bed, on your own schedule, surrounded by your own things and (presumably) family to help, seems unquestioningly the preferred default. Conversely, being in a hospital or facility setting at the end of your life tends to be viewed as being “dumped” somewhere or not having anyone who cares looking out for you. It also assumes the home is the appropriate setting to care for all terminal illnesses.

In the past, when I’d read obituaries that said “Mrs. So-and-so died peacefully at home surrounded by her family,” I’d assumed unquestioningly that the situation as described had been good for the patient. I never stopped for a moment to reflect on how the family had felt or what they had endured throughout the course of the illness and death, or even if professional care would have been more appropriate.

The presumed superiority of a home death and the societal expectation that a family can execute that wish makes broad assumptions about home infrastructure, the financial resources of the family, and the primary caretaker’s emotional and physical health and work schedule. It also assumes that not only are there adult children or other relatives who can pause their own lives for extended periods to come and assist, but that there is nothing in the relationship between the patient and prospective caregivers that would preclude such an arrangement, such as a history of abuse or estrangement.

Transferring every need of a patient from a clinical setting into a home can create an unspoken and unacknowledged caregiving burden on families. Even when we want to be the ones caring for our sick family members, sometimes it just isn’t possible. And when it is possible, there are often significant sacrifices involved.

“Around 53 million Americans are caregivers for a family member or friend with a health issue or disability, and nearly a third spend 20 or more hours a week in that role. The Centers for Disease Control and Prevention, which calls caregivers the “backbone” of long-term home care in the United States, has warned that caregivers face many risks — anxiety and depression, chronic health conditions and financial strain, to name just a few.”

“The Quiet Rage of Caregivers,” New York Times, November 9, 2023

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The gap, underwritten by informal care

My family’s experience of this brought to my attention the underlying “why” things are the way they are when someone enters hospice in the United States. Unsurprisingly, it’s systemic.

According to the Association of American Medical Colleges, citing a New England Journal of Medicine Study, in 2017 dying at home again became as normative as it had in the earlier part of the 20th century. In-home hospice support had expanded enough that patients felt empowered to ask to leave facilities and die at home. But patients’ families are often caught off-guard, as we initially were, that the Medicare-funded hospice nurse support only comes twice a week for about an hour. Of course, this may increase to a short daily visit in the final days. But the rest of the time, a patient’s family as informal caregivers must attend to all their needs, whether consistent over a long time period or gradually increasing as the patient grows sicker.

To be clear, L’s hospice nurses were amazing. One in particular feels like part of our family now. She taught my dad and I so much – how to organize and administer L’s medicine, how to safely get L in and out of bed, how to shift her weight when she could no longer do it herself, how to clean her gastric tube, tips for dealing with a colostomy bag, and about a million other things. There is no way we could have done it without her.

It’s more than wonderful to have hospice nurses when they come, but for the other 23 hours in the day, including in the middle of the night, who is going to be the one to deal with toileting? With pain? With controlled substances? With confusion? With hygiene? With getting in and out of bed and chairs? With errands and shopping in rural places where grocery deliveries aren’t possible? How are the caregivers going to take care of themselves and get a break? How many caregivers can come and take turns? What if there isn’t anyone? How do they even manage communication to people outside the house, explain what’s happening to those with a need to know, and identify what additional help is needed?

I think families in general get surprised that they have to be the ones to manage all this, in addition to distressing medical symptoms like agitation, pain, and breathing problems. For medically untrained and emotionally-involved family member, these situations can feel like “emergencies,” and it’s dismaying to be told in hospice there are no emergencies. Home can become a scary, isolating place.

Perhaps others were aware of this huge gap in end-of-life care, but I have to say despite being a reasonably well-informed individual, I was not. If your dying loved one insists on being at home, family is pretty much in the lead with limited support (again, with no shade to our wonderful and hard-working hospice nurses who went above and beyond for us). I watched my dad basically do the vast majority of the hard stuff alone since her June 2022 diagnosis. It was amazing, but not really sustainable. I came to visit five times between then and my final visit, and some other family members did as well, but it was nothing compared to what my dad dealt with.

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Unless a family has the significant resources necessary to hire aides or nurses, informal caregivers become responsible for nearly everything — from feeding to bathing to toileting. These tasks often get harder as the dying person weakens. In my experience, most family members want to care for their loved ones at home, but many are unaware of caregiving’s physical and emotional toll. And the length of time a patient spends in hospice care is difficult to predict, sometimes requiring caregivers to take significant time away from work or other family members…Clinicians across medicine should elicit and, whenever possible, honor their patients’ preferences for where they want to die. At the same time, we need to acknowledge our own uncertainties and be honest — with ourselves and our patients — about the difficult trade-offs these choices entail.

Richard Leiter, M.D. – “Is Dying at Home Overrated?” NY Times, September 3, 2019

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The Journal of Housing for the Elderly published a paper in 2018 that I couldn’t read because of a paywall, but the abstract was fascinating:

Although ample research suggests that individuals prefer to die at home, the realities of a home death experience, from the perspective of family members, are not well understood. The following study addresses this gap in knowledge via a narrative analysis about the process of dying at home. Five family caregivers participated in semistructured interviews about their experiences witnessing and supporting the end-of-life process of an older family member who died at home. Their stories paint a vivid picture about the motivations and consequences of the experience, including themes such as caregivers’ immense feelings of uncertainty regarding their caregiving abilities and decision making, the significance of the home environment as a symbol of comfort and security, the influence of family and social networks, and “dying well” as a social justice issue. Overall, the caregivers’ narratives support the notion that being at home is considered an essential aspect of ”dying well.” However, the narratives also demonstrate that dying at home presents many challenges for family members, especially to those with limited resources and social support. Thus, the authors caution against viewing the home death as a proxy for a good death.

‘The Motivations and Consequences of Dying at Home: Family Caregiver Perspectives’
https://doi.org/10.1080/02763893.2018.1505460

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Trusting yourself to do what’s right

What’s the alternative if a home death doesn’t work? For most without long-term care insurance, it’s unlikely they would be able to privately afford the $8,000 monthly average for an elder care or hospice facility. According to the Alzheimer’s Association, 70% of lifetime costs of care are borne by family members in the form of unpaid caregiving and out-of-pocket expenses.

Ultimately, my dad and L decided it would be best for her to spend her final days in a professional hospice center which they had chosen in advance. Our family supported this decision as the best option for all involved. My dad and I talked several times about how lucky and privileged we were that this was an option for us, and fretted about how people with less resources would manage in a similar situation.

The facility where L went was a small, six-client home. The people there welcomed our family, and my dad was able to live there with her for 17 days until she passed. I also visited 15 of those days around my remote work obligations, for as long as I wanted. We even brought their dog and trailer. There were two cats there named Bucky and Orion, and a black kitten named Caroline.

The most important thing the hospice facility angels did was come alongside our efforts and let us be L’s family in the end, which I will always be grateful for. It wasn’t that they could do things we could not. It was that we wanted to revert to the roles we had before. No one could take better care of her than us, and we never stopped taking care of her. But because my dad and I were no longer running around frantically doing every nursing and housekeeping task alone and without any other support, we were able to better take in the situation and focus on providing the comfort she needed. That was something only we could do.

It was my dad’s smart planning – and the resources and opportunity to conduct that planning – over the years that helped him access what they needed when they needed it.

But in some ways, the cynic in me says what it did was provide much more expensive care in a different place, instead of a series of nurses in their home which would have allowed L to stay home more safely and cheaply. So although every individual person in the system was wonderful and a godsend, the overall system was frustrating in its inability to meet us where we were. It was flawed on a level far beyond what any of us could ever influence. So like everyone else, we just did the best we could. I can’t say anything against the place where she stayed. It was absolutely wonderful, and I think the people working there are angels.

Grief and gratitude

And now we are left to sort ourselves out, to get on with the important work of grief, to shake off the shell-shock of cancer and caretaking, and focus on honoring and remembering L and the life she lived.

I think it’s OK to ignore holidays or to disregard societal instruction to be of good cheer when you don’t feel it in your heart. But in this season of Thanksgiving, I find I am grateful.

Grateful for neighbors and a community that helped out immeasurably.

Grateful for the bath aide who still came to bathe L even when her co-workers decided to go on strike.

Grateful for the nurses who didn’t give up on us when we doubted ourselves.

Grateful we had the courage and ability to do what was right against the false narrative that suggests something “went wrong” by moving someone into care.

And grateful for being on a domestic tour in a directorate that allowed me the flexibility to spend several weeks teleworking from another state so I could help take care of my family, while still being a good employee and helping out my team. I didn’t have to choose between being a good daughter and being a good FSO, and that is something I will never forget. Being there with her, and even more importantly, the comfort to her knowing I was there and would stay all that time, was priceless.

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If you’re interested in reading more academic work on caregiver burnout, I found an open source paper by BMC Palliative Care on a longitudinal study of working informal caregivers. It studied two groups with two trajectories of caregiving burden depending on the patient’s illness – one that remained persistent over time and one that increased over time. It also made recommendations about the increased amount of support needed from health professionals (read: government investment) and employers to assist bereaved individuals with workplace reintegration.

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