Time to talk about living, and dying, well
We’re all about the cure, but in fact, we will die, and you need a plan
There are many fears we all live with daily, and one of those fears is hearing the words that we or someone we care about is dying from a life-limiting illness; like Cancer or ALS.
I remember hearing these words about 15 years ago. My family stood there as we heard them say: “You have stage four bone cancer and you have at best a year to live but most likely six months”.
I stood there sobbing and in shock. How could this be when he walked into his appointment, and he is working daily.
We thought there must be more that can be done. But the reality soon sank in. My children were in middle school at the time when we then learned that it was not just one of their grandfathers that were dying but both.
Within six months both grandfathers were gone before the age of 72 because of cancer. None of us were prepared, none of us knew how to talk or plan for a good death and for living well up to end of life. We missed some important moments, but we did the best we could.
Two years ago this May, I took on the leadership role at Dr. Bob Kemp Hospice. Dr. Bob Kemp himself was a leader 25 years ago, advocating the need for palliative care in the community including the need for a residential hospice. His legacy of compassion and care has inspired our work and care ever since. What I have come to understand more clearly is we all need to talk more openly about dying and our wishes at the end of life. As both our medical directors have said to me many times “we are a death phobic country”. We talk about the quality of living well but not the quality of dying a good death.
We talk tough about finding a cure, fighting and surviving diseases but then we stop talking when there is no cure. We act as though we have failed. In the UK and Australia, they are more progressive and more open to this discussion thus people can access services and supports more openly, and they talk about their end of life care plans. They offer better support to caregivers and their families. They offer more information, services and support for the emotional process and legal process of dying.
Last year over 13,000 people in Hamilton died. Each one of those has friends, colleagues and family members affected. Dying and death is truly an issue that we will all face.
According to the Continuing Care Reporting System, in 2014/2015, 62 per cent of palliative care patients in Hamilton, Niagara, Halton Brant area died in hospital, and 40.5 per cent, or 38,000 Canadians in Ontario, did not receive any palliative care services. The main reason given for this is the majority of us do not know what services are available to us and what a palliative approach means or what it can do for us.
In the past two years, I have had the privilege of witnessing a palliative care approach, seeing the expertise and compassion that our staff members and large volunteer team deliver to patients and their families. Because we provide support to those who are dying from a progressive life-limiting illness such as cancer or ALS.
The folks who come to us are at all stages of life, with the average age being 71. This year we had a number of people who were between 40 and 55.
The term advance care is foreign to many. What people don’t realize is that advance care planning can ease the emotional, physical and legal processes of dying and can help families manage better and grieve more openly. Advance care planning is not just about DNR or your medical directive. It is centred around having conversations about who in your family and/or circle of friends will speak for you if you cannot. Who will be your main caregiver? Are they up to the task? Do they fully understand what is expected of them? What resources or services are available?
We plan for many things in our lives; like the birth of children, building relationships, buying a house, planning our meals and fitness, but we stop talking when it comes to planning for our death. We can change this by starting the conversation in our homes and with our friends.
Join us at Dr Bob Kemp Hospice as we work with our partners in the community and you to open this conversation and to build a community that celebrates living and dying well. Nursing is an integral part of palliative care; please join us in a salute and thank you during National Nursing Week.
Clare Freeman, executive director, Dr. Bob Kemp Centre for Hospice Palliative Care.