"Exposing the Silent Crisis: The Hidden Realities of Caregiver Burnout in End-of-Life Care"
If someone were to ask me what the bulk of my death midwifery work has been—my work with people who are caring for those who are dying—I would have to say that it has been helping caregivers in the throes of exhaustive care for their loved ones, often doing so by themselves or with very little support.
Over the past 10 years, I have received numerous calls from caregivers who are overwhelmed, trying to manage their dying loved one’s care. This includes navigating medical systems, administering medications, handling finances, coping with the letdown from the medical-industrial complex, and simultaneously trying to maintain their households, their grief, and sometimes even their own sanity.
What is so heartbreaking about this part of my work is twofold. First, much of this caregiver burnout is preventable. If caregivers knew beforehand what end-of-life care in the so-called United States looks like, plans for balanced care could have been made. If caregivers had a big heads-up that they would be doing the bulk of the care on their own, they could have prepared care systems. If the dying person themselves had known this was coming, they could have orchestrated care systems around their own dying.
Second, there is a widespread assumption that Hospice groups will take care of the person who is dying. A profound shock occurs when families learn that Hospice only provides a few hours of care each week. A simple Google search will tell you this, but few people research it ahead of time.
It is very frustrating for me, as a death midwife, to see well-known Hospice nurses fail to share this crucial information with their large audiences—information about the limited hours of care available. While some Hospice groups may arrange respite care for caregivers, meaning a few days in a nursing facility for the dying person, this is just that: a few days. The dying process can often last for months.
This massive gap in end-of-life care is a product of living in a capitalist society built around isolated nuclear families. This structure is by design. For the most part, we do not live with extended families. Our communities are made up of friends and some family members who are also working long hours at their own jobs. There are families with large extended networks who can help care for a dying loved one, and there are families with the financial means to hire care services or pay for assisted living facilities. But what about working-class people? What about those who cannot afford to hire care services or assisted living?
For these families, Medicaid-funded nursing facilities may be an option, but the quality of care in state-funded nursing homes is a separate and deeply troubling issue.
When I speak publicly about this gap in care, I often encounter gaslighting from people within the medical-industrial complex unwilling to side with burnt-out caregivers or to spread this information widely. This "heads up" is not displayed prominently on Hospice groups’ websites.
Providing a burnt-out, adrenal-fatigued caregiver with three days of respite care is insufficient. All of this ungracefulness could have been mitigated if people in the general public understood their end-of-life care options well before they needed them. Reaching out to me when things are at their worst, when caregivers are about to hit a wall, is preventable.
The grief for working-class families is compounded because they are trying to keep a roof over their heads and food on their tables while providing care for their dying loved one. They are also letting go of their loved one while grappling with guilt over the care they wish they could provide. Sometimes, death brings mercy to caregivers as well as to the dying person. Death delivers mercy because it allows caregivers to stop, rest, and catch their breath. Nothing frustrates me more than seeing caregivers endure this compounded grief.
If there’s one thing I wish the general public understood about end-of-life care in the so-called United States, it’s this: the care of a dying person needs to be thoughtfully considered long before a terminal illness diagnosis. There is an urgent need for a cultural shift in how we understand and plan for end-of-life care.
Death midwives and death doulas are ready to help caregivers and dying people, but the prevailing narrative is that death doulas provide something “special.” In all my years of doing this work, I’ve rarely been called to offer something special. More often, I’m called to help caregivers who have dark circles under their eyes, who are weepy with adrenal fatigue, and who are exhausted. Trying to figure out care systems in the heat of crisis is limiting.
Death doulas and midwives can provide several hours of care, but they usually cannot offer 8-hour shifts like paid sitters can. It’s crucial to have conversations about end-of-life care when people are healthy and clear-headed. We need to acknowledge the many limits of end-of-life care and think creatively about alternative ways to manage care teams for both caregivers and the dying.
One solution could be forming death care cooperatives in communities. This could involve healthy individuals or families coming together to discuss how to support each other during end-of-life care situations. Agreements could be made—written and signed—outlining shared approaches to caregiving.
It is vitally important for dying individuals that their caregivers are rested and cared for. Good death care means deeply caring for caregivers. When caregivers are burnt out and exhausted, this exhaustion trickles into the dying spaces and can create ungraceful dying experiences.
My hope is that the death worker movement helps shift societal understanding of end-of-life care through education. We need more education about end-of-life care systems—urgently.
