#BecauseIMatter aims to integrate palliative care
Hamilton hospice campaigns to dispel myths and misinformation about end-of-life care
October 13 marks World Hospice and Palliative Care Day. Hospices around the world are engaging communities to get involved in this year’s campaign #becauseimatter. This year’s theme was inspired by the words of Cicely Saunders, founder of the first hospice in the world in 1967, who famously said: “You matter because you are you and you matter until the end of your life.”
Hospice palliative care approaches to living well every day with a life-limiting illness, along with end of life care and bereavement support are relatively new approaches to health care in Canada and are surrounded in mystery and misinformation.
The #Becauseimatter campaign aims to integrate hospice palliative care into regular health care planning and continuum. A hospice palliative care approach is person-centered care focused on the individual’s goals of dignity to provide excellence in pain and symptom management, excellence in personal care supports, excellence in social activities and community supports and excellence in end of life care and bereavement care. Over 26 years ago, Dr. Bob Kemp and the Hamilton Stoney Creek volunteer health group spearheaded Hamilton’s first palliative care approach to care. Today, Dr. Bob Kemp Hospice continues to offer wellness programming, visiting volunteer services, education on advance care planning, end of life home-like residential care services and bereavement services.
Sadly, most individuals think that palliative care approaches are about giving up, or succumbing to death. This could not be further from reality. Often when individuals or families are offered palliative care, they will say, “No, that is not for me, I am not dying yet.” They will then slowly isolate themselves and deteriorate or suffer in needless pain. This will often lead to unnecessary emergency room visits, caregiver burnout and crisis calls from the family near end of life. Individuals will also avoid conversations about their own grief and loss, and thus miss out on creating lasting memories that can support their families.
The avoidance of planning for death through advance care planning or wills is one of the most disturbing issues. When a person’s health is compromised to the point that they can no longer speak for themselves, then someone will need to. This is a very big responsibility and one that requires many lengthy discussions with the person. It is so much easier to have these conversations when our end journey is not in sight versus when it is. In addition, after death, the wishes and the estate of the person will need to be handled and again this is something that requires a lot of thought and time. The legal, financial, spiritual and emotional need each one of us has is important and it is important to communicate this to those who will live on after us.
Grief and bereavement are often neglected and yet they are vital. They need to be removed from the shadows and integrated into our everyday lives. One misconception is that palliative care only takes care of the patient. Grief and bereavement supports are key to palliative care approaches. It is because you matter that hospice care needs to be part of your planning conversations.
The first step in any sort of planning is to get informed. There are many groups in our city helping people open up conversations, such as the 100% Certainty Project. This program is run by a group of professionals in our city who know first hand how patients are affected when their family members or even they themselves don’t want to talk about what matters to them. On Oct. 17, this group is hosting a free public screening of the “End Game” with a panel discussion and a book launch at the David Braley Health Sciences Centre.
Over the past year, Dr. Bob Kemp Hospice has been offering free community educational events, titled “Let’s Talk About the End Journey.” This interactive event gets people talking about themselves and learning from others to dispel the myths and fears around end of life conversations. These workshops are held in a casual setting and provide education on advance care planning and the value of making this part of regular health care planning. Getting informed will ensure dignity and care is provided for everyone. Join the #Becauseimatter campaign by tweeting this out and attending Dr. Bob Kemp Hospice on Oct. 24 for “Let’s Talk About the End Journey,” hosted at Southcote 53 Tap and Grill, 534 Garner Rd. E., Ancaster. To register call (905) 387-2448 ext. 2213