We prepare for the birth of our children. Parents have a carefully drawn out, memorized and practiced “birth plan”, ready to spring into action the moment labour commences. We prepare for our deaths, often as early as in our thirties or forties. We make wills to ensure our worldly assets are distributed to the right people: our family, friends and charities. Some people select flowers to be placed on their coffin and songs to be sung at their funerals.
So we prepare for what happens when we are gone; we make sure our spouses and our children are taken care of and that our legacy will be remembered. But who of us has prepared for what should happen while we are going? Why do we not better prepare for our own dying? Why don’t we have a “dying plan” in place for ourselves and for our loved ones? Some people sign DNRs, or “Do Not Resuscitate” forms so that heroic measures will not be taken near the end, so that they may let nature take its course, but many decisions must be made in the season of dying before coming to the point of enacting a DNR. These decisions are often left until the last moment, leaving family members, doctors and caregivers scrambling to find the proper care and resources when they should already be in place.
Dr. Denise Marshall of McMaster University sheds light on our fears: “Our society is not against death, but against dying. We are a dying-denying society; we want death without dying.” This “invisible death” is a new phenomenon in western culture, only widespread after WWII. We hide the dying in solitary hospital rooms, tucked away in palliative wings, so we do not have to see the ugly uncomfortable side of dying. Death is not always dignified, but we can revive the dignity in it by continuing to care for the dying at home. They’re dying; it seems only fair that they do it on their turf, on their terms.
There are many cultures around the world where dying at home is commonplace. Grandparents, parents and children all live under the same roof, and often spend their dying days together, being cared for by younger family members. This may be because of lack of access to health care or money for hospital bills, but there is something beautiful and profound about dying at home, surrounded by family.
According to Cardus, More than 70% of Canadians who died in 2014 did not have access to palliative care. Residential hospice beds (home-style hospices with a comfortable community environment) are non-existent in the territories, and as of 2014, three provinces also had zero residential hospice beds. This means that most of Canadians who died were actually tucked away in lonely hospital rooms. Residential hospice beds cost about 60% of a bed in a palliative care bed in a hospital. Dying at home can cost less than 10% of what it does in hospital. So not only could we be caring for the dying in a space they feel most loved and most comfortable, we can save precious government dollars allotted to palliative care in Canada to ensure that more residential hospices can be opened and that acute palliative patients are provided with the most attentive care.
Dying at home enlists friends and family as caregivers to completely surround the dying with love: people who will shovel the driveway, bake cookies, share stories and laughter, read aloud, offer dignity and respect to each other and to the one dying. This can bring the caregivers a sense of peace, being part of the gift to the dying in their final days. Being in community with the dying at home makes the loss bearable for the caregivers, because it is a loss that is mourned together. The social benefits for the elderly are unmistakable as well; isolation can lead to serious health problems in aging populations, worsened in lonely hospital rooms. Read more about the risks of loneliness here.
But this is no easy task. It takes a lot of courage. Henri Nouwen reminds us that caring for the dying should not be done alone. It is extremely likely that neither you nor your family members can afford the time off work to commit to the full-time care of a parent or grandparent. You may need the proper medical equipment and a nurse professional to help administer medication. You will likely need the guidance of a palliative doctor. With resources through your local Community Care Access Centre or Local Health Integrated Network, services like Meals on Wheels, housekeeping and at-home nursing care can be easily booked. These services take the burden off the hospital resources by reserving hospital rooms for urgent care patients. These services are built around the idea that living and dying at home are healthy, and good.
So think now about your death plan. What would you hope for your loved ones: a sterile death in a hospital ward, or a warm and loving death, surrounding by family and caregivers in a home? What if we said “she died well”, not because a doctor told us she peacefully died in her sleep in a hospital room, but because she died surrounded by the ones she loved, holding the hands of the ones she loved? And for a fact, we would know that there was life in their season of dying, because we were there.