I arrived home ready to relax and watch The Crown after an intense work day, which included debriefing the family of a person in hospice who had died that night. Although we’d advised the family about the often brutal nature of dying from throat cancer, it can be difficult to imagine for anyone who hasn’t previously witnessed the choking, suffocating death that often accompanies a ruptured neck or head tumor. As the tumor ruptured, the family understandably felt frightened and requested to transfer the patient to the hospital even knowing the likelihood of any intervention saving their loved one was miniscule.
After spending the day with them, debriefing not only the loss of their loved one but also the horror of the death experience, I turned on The Crown. Ironically, the next episode in my queue showed the death of the Duke of Windsor. The surprisingly peaceful progression of the duke’s esophageal cancer and eventual death sat in stark contrast to my day. In a stroke of luck, this converged with the Nursing Clio call for articles looking at the Deathbed. I realized this would be the perfect opportunity to share information about a topic I consider one of the most important but least talked about.
For more than 20 years, I have worked as a social worker in settings ranging from family services to emergency psychiatry. Currently, I’m a palliative care social worker, working with people (and their families) who have been diagnosed with a life-limiting condition and whose death is in the foreseeable future. One of the privileges of this kind of work is that I routinely attend people as they die. These deaths have included medically-assisted and peaceful deaths (either naturally, or as a result of palliative sedation). There are also more dramatic deaths, from the deep, unrelenting pain of cancer that infiltrates the body, stealing comfort and life, to the often rapid death of exsanguination from ruptured tumors. One recurring theme, regardless of any other factor, is the profound confusion people have about the dying process. But this confusion makes sense; unlike previous generations, few of us have experienced planned prolonged deaths at home (though this is changing). For many, our exposure to death is through media portrayals, which are not designed to educate us about the nature or reality of death.
To begin, let’s consider the modern history of dying in the West. By 1950, half of the deaths occurring in Canada took place in hospital rather than the home. At play in this shift were a variety of factors, including changes to the health care system, women’s changing social roles, and postwar prosperity. Until the period after World War II, the death experience was a community event. Family, friends, and community members attended the dying and performed postdeath rituals, such as preparing the body for burial. This had its challenges, but along with the realities of lower life expectancies and higher mortality rates, it also kept the reality of death in the forefront of people’s minds. The community intimately understood the hard work of dying, and so even when it was a neighbor you hated, you showed up with a casserole, you fed the horses, you helped with laundry, and maybe even took a turn sitting with the dying person. Following WWII, however, health care and death largely moved into institutions (hospitals, long term care, and hospice).
From my professional vantage point, as well from the perspective of a family member of a palliating person, I believe that the change to more institutionalized care comes with benefits and consequences. The sick and dying now have access to curative interventions and increased comfort; caregiver burdens have also decreased, which is especially important as families have shrunk and become more geographically diverse. But the costs are significant as well, including painful life-prolonging procedures with little benefit to the patient and social isolation. For some palliating people, bodily functions shut down as part of the dying process well in advance of actively dying; this includes bowel and bladder concerns, the inability to swallow, and the inability to use their limbs. Often the discomfort that accompanies the fluctuating challenges of dying results in the need to surrender the desire to die at home in favor of the increased comfort and accessibility of institutional care.
At work, I most often address this concern and the accompanying guilt alongside the realities of caregiver burnout and financial strain. One of the greatest challenges for all involved is striking the balance between providing necessary care and respecting the dying person’s wishes with what the caregiver can reasonably manage. In some ways, the greatest benefits in palliative care have resulted in the greatest consequences. We can keep a person much more comfortable and alive much longer than we once did, but for many, the consequences include a more medical death, geriatric poverty, social isolation, and other challenges.
When people can die at home, we can more humanely manage some of the concerning aspects of palliation, such as symptom relief and pain control. It also means that professionals provide much of the supplemental care (such as personal care and emotional support) that would once have been provided by family and community members. This modern way of dying often means the bulk of the day-to-day caregiving work falls to the immediate family, most often one person who identifies as female because of gendered divisions of labor. While most people express a preference for dying at home, the majority still won’t. Many people (patients and families) are not prepared for this, and it can feel like a failure when the person or proxy decision maker decides to move into an institutional setting.
The reality is that, for too many, dying – and caring for the dying – is hard work. When the general public doesn’t understand this, the unpaid caregivers who do the heavy lifting don’t get the support they need. In Canada, we have made some progress with regard to financial benefits for caregivers, but the funding isn’t nearly enough. It’s challenging to manage the financial burden and the energy needed to support someone dying with all of the appointments, interventions, and the needs of everyday life.
I worry that we are disconnected from the realities of death, outside of media portrayals. The unexpected ups and downs of dying can be emotionally draining on the dying person and their caregivers. Imagine it: you’ve watched your loved one decline over days or weeks and it looks like the end is inevitable. You’ve prepared yourself. And then they rally and you have a few more months. It’s a gift. And then you’re going to do it all over again, maybe many times. It wears on people, and then they feel guilty about feeling worn. We struggle to imagine this because, when we institutionalized death, much of the community knowledge around the process fell away. With that, we also lost what it means to die and how to support the dying person and their family. Death became a medical process away from view. This, I believe, shifted our ability to understand and talk about death.
Death certainly thrust itself back into our conversations this year. I completed the first draft of this article in March right before we felt the significance of the COVID-19 outbreak. There is no question that with COVID-19 came tragedy and trauma, but I hope this experience will ultimately change us for the better. Now we are having conversations about what it means to die, especially what it means to die alone, and we are trying to understand how we come together to mourn while maintaining physical distance. We are considering grief, ability, and access to health care differently. While I believe the effects of this tragedy will ripple through the next generations, I remain hopeful that this collective experience may change our relationship with death and the dying.
So what do I hope will happen? First and foremost, I want better social programs to support the dying and their caregivers. You can be part of that by asking your elected officials what they are doing to support these programs. Second, I want us to support each other better. Take your neighbor a meal, offer to shovel their walkway, whatever it takes. Let’s cease with the distance of rugged individualism and connect with one another instead. That way, when dying comes to our neighborhood, we already have a network. Finally, I want us to talk about dying. I want us to talk about the experiences of supporting people who are dying. I want us to talk about our fears and hopes for dying. I want dying to be part of our conversations so that when we’re the ones facing it, we are facing it as part of a community who understand how to support the dying.
Thank you for this. Several of my siblings and I recently accompanied my mother’s death-at-home and even though she had a relatively quick end, it was still terrifying as none of us had ever experienced this before. (Most terrifying for my mother, I think.) Due to COVID, the visiting nurse was late arriving so we did the best we could. I am so grateful I was there and it was so difficult.
Thank you so much for your comments. I certainly do not want to discourage people from considering dying at home and I hope highlight some of the realities that people might not be anticipating so they can feel more prepared. What I really hope for is to push for systems changes that might generate a more positive experience for the dying person and their supports.
Thank so much for sharing your experience. I am sorry for the loss of your mother. Peace.