When Someone You Love is Dying at Home: What Families are Often Unprepared For
Studies show that about 75% of Canadians, if given the choice, would prefer to die at home.
With the country lagging sorely behind in the availability of long term care beds, people may have no choice but to die at home, wishes notwithstanding. On the surface it sounds convenient: “I want to die at home anyway so it doesn’t matter if there aren’t any beds available.” But preference doesn’t equate to policy. Dying at home requires resources (human, financial, medical), preparation, and emotional resilience. Without these things in place, what appears like alignment can become a strain, with caregiver burnout, overly stretched finances, reliance on a medical system that cannot fully meet our needs, and the shock of seeing death up close and personal.
When someone chooses to die at home, families are often unprepared for the practical, emotional, and logistical realities that come with supporting a home death. Below are some things that families need to consider.
The Reality of What it Takes to be Caregiver
Many families don’t realize the amount of emotional labour that’s involved when caring for someone who is aging or living with illness and plans to die at home. Caregivers aren’t fully prepared for the ripple effect that happens when they adopt this critical role. In addition to maintaining their own lives, jobs, and parenting responsibilities, they now have additional duties that certainly don't follow a Monday to Friday, 9:00am to 5:00pm schedule. Many caregivers report feeling: overwhelm, stress, exhaustion, isolation, resentment, and grief. This can easily lead to burnout unless caregivers know when to ask for help, take breaks, create an engaged web of support around them, and connect with community caregiving resources.
Reliance on Medical and Non-Medical Support and Services
Many people living with a serious life-limiting diagnosis will require support and services beyond what family caregivers can provide. In British Columbia, if a person has been deemed close to the end of life by their primary care provider, they may be eligible for palliative support services at home. This can include community nurses and–where available–referrals to specialized palliative care teams to manage pain and more complex symptoms.
It’s important to note that if someone is receiving palliative care at home, certain pieces of equipment may need to be brought into the home to make caregiving manageable. Depending on the person’s condition, this could include a hospital bed, a mechanical lift if mobility is limited, a bedside commode, bathroom and hygiene supports, and respiratory equipment. The home can start to feel quite medicalized, which can have a significant emotional impact on the person who is dying and their caregivers.
In addition to medical support, home care to address the burgeoning non-medical needs of daily living (bathing, dressing, transferring) may be required. Contrary to what many people may think, this service is not free. Publicly subsidized home care is income-based and billed by the month. While the costs are capped, it can still be a significant expense for retirees living on a modest, fixed income. Subsidized home care generally includes: bathing (often it’s a simple sponge bath), dressing, grooming, toileting, and mobility support. It does not include: meal preparation, housekeeping, or laundry. Visits are short and task-based. Subsidized home care can be requested through one’s local community health branch where a case manager will be assigned to the person in need of it. This can take time as the system is maxed out and people should expect to have to follow up.
For those who can afford private-pay home care, the level of service can be customized to suit their needs. 24/7 support is available and care can extend to meal preparation, grocery shopping, running errands, housekeeping, and companionship time. While having a full spectrum of care is wonderful, the costs can be astronomical and can quickly add up to tens of thousands of dollars a month.
A Critical Document That Can Preserve Peace After Death in the Home
Even when all medical and personal care supports are in place, if someone is going to die at home there’s an important document that needs to be completed before that happens: an EDitH (Expected Death in the Home) form. This document is completed by a doctor or nurse practitioner when death is anticipated in the near future, and is sent to a funeral home of choice in advance. Without this form, if someone dies at home and it hasn’t been formally documented, 911 is called and paramedics may be obliged to attempt CPR, police typically come to assess the circumstances and ask questions, and the coroner will come to determine if the body can be released to a funeral home. All this activity can obviously derail what could have been a peaceful and calm environment in the moments after death. Having an EDitH form in place can preserve peace and reduce stress during these significant moments.
The Emotional Impact of Seeing Death
If someone we love is dying at home, it would be helpful to learn about what the dying process can look like, so we’re more prepared when the time comes. In our modern culture where death has been medicalized and removed from our homes, the vast majority of us have never seen a dead body, let alone witnessed what happens as someone draws close to death and enters active dying. The experience can be both profound and unsettling. We have images from movies where people say their parting words to loved ones, take one last breath, and die without a hair out of place. This narrative is a disservice to our death-phobic society.
The physical, cognitive, breathing, and socio-emotional changes that come with death are significant and can often cause distress to family members witnessing it; arming ourselves with knowledge beforehand can help us feel more prepared, less fearful, and emotionally grounded. Death, like birth, comes in all forms with its own timing. Sometimes it’s messy, noisy and smelly–and that is totally normal and okay.
The Moments After Death Can Be Opportunities To Integrate and Say Goodbye
When someone dies at home, we are given a precious opportunity to say goodbye and begin processing our grief. The beauty of a home death is that there is no rush to do anything immediately following death (provided an EDitH form has been completed). In BC there isn’t a legal requirement for a body to be transferred to a funeral home within a set amount of hours. In a hospice or long term care home beds are in high demand, so we’re not given the luxury to spend additional time with our loved one. At home, we can put on a pot of tea and let the enormity of this huge transition settle in our mind and soul. We can incorporate rituals to say goodbye to our person while allowing us to step into our grief without being rushed. Most families call the funeral home within a few hours. But if people would like the body to stay home for a few days (usually 2-3)–be it for personal, religious, or cultural reasons and rites–this is doable and safe with proper knowledge and precautions in place. More information on home-based after-death care can be found here.
Dying at home has many merits. Being surrounded by familiar sights and sounds, the presence of loved ones, and the comforts of daily life is something most people would wish for. But a home death rarely unfolds easily without intention. It requires planning, a robust support network, financial resources, and a certain education about what the process actually involves to make it work–not just for the dying person, but for the family that will accompany them. When those elements are in place, the process can go from being merely manageable to something meaningful, and even healing.
If you’re supporting someone who wishes to die at home and would like guidance or support, you’re welcome to reach out to me to learn about how I can help.
If you want a deeper dive into some of the topics discussed above, please visit the following sources:
Sarah xx
