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AMONG FRIENDS: Changing perceptions of palliative care

Margaret Ellen Disney, chair of the Aberdeen Palliative Care Society, is hoping to raise awareness of the care that is available in Pictou County.
Margaret Ellen Disney, chair of the Aberdeen Palliative Care Society, is hoping to raise awareness of the care that is available in Pictou County. - Rosalie MacEachern

With an increasingly aging population, it is time for people in Pictou County to think seriously about palliative care, says Margaret Ellen Disney, chair of the Aberdeen Palliative Care Society.

“There are conversations we should be having, some of them hard and some of them hopeful and reassuring. It helps if you can have those conversations ahead of time and it’s also a great help if you can get involved in supporting the program.”

Palliative care is compassionate care for those living with life-threatening illness for which no cure is available. 

“We have six beds at the Aberdeen which are dedicated to palliative care but the program extends far beyond those beds. Eighty per cent of people in the county in palliative care are in their own homes or nursing homes.”

The care focuses on quality of life, including pain management, and every effort is made to adapt it to individual circumstances.

“It is not just for people struggling with cancer or just for the aged. It is for anyone who needs it, any age, any circumstance.” 

Disney, who grew up in Halifax, first became involved with palliative care when she moved from Nova Scotia to Peterborough, Ont. 

“As a newcomer, I was looking for ways to get involved in the community. I met a woman who was working to open a hospice and became involved through her. I really stumbled into palliative care but I’ve become passionate about it because of what I have seen through the years.”

Her first involvement was at the board level, but she credits a client training program with bringing her to a fuller appreciation of the need and potential for palliative care. 

“I was busy learning in Peterborough, but I was always aware of what was going on in Pictou County since my sister lives here. I heard about Dr. Winston Makhan’s early interest in palliative care. I’d known Dr. Gerry Farrell for years and we’d visit when we were here in the summer so I was always somewhat tuned in.”

When the Disneys left Peterborough they chose to settle in King’s Head, closer to family and particularly to grandchildren living in Halifax.

“It was a big decision, but it has been a good decision for us.”

She first joined a community health board at the Aberdeen but was later urged by long-time palliative care advocate Eric Arbuckle to join the society. A year at the helm as president of the Aberdeen society has affirmed everything she learned in Peterborough.

“A terminal diagnosis can be very isolating. There is so much fear, so much worry and there is so much palliative care can help with.”

While palliative care tries to meet the needs of each patient, Disney believes many clients have common concerns.

“Generally speaking, they don’t want to be alone, they don’t want to die in pain and they don’t want to be a burden on their families. Many don’t want to see partners or children stressed and there can be great concerns about the cost of care.”

The two main ways the public can help are by donating money and time.

“We had great support for a recent fundraiser at Crombie House and we’ll perhaps look at doing something like that again in the future. In addition to raising much-needed money, I believe it also increased the awareness of palliative care in our community.”

Palliative care regularly purchases equipment to make life easier for clients. 

“We work so hand in hand with the staff they just tell us what is needed and we get it. We try to fill the gaps by providing such things as wheelchairs, home oxygen beds and medications that are not covered.”

It is not a case of staff reporting to the society because they are actually part of the society. 

“Our board is three-quarters volunteers and one-quarter staff. We really do operate hand in hand.”

The society also has community partnerships which can help clients and their families.

“We’ve just recently formed a partnership that will provide free passes to the Museum of Industry. We already have similar arrangements with the Pictou County YMCA and the Pictou County Wellness Centre.”

Another partnership is with CHAD Transit which helps get clients to medical appointments. 

“We have many people working together to ease the strain of illness on clients and their families but we’d like to see this grow.”

The society has also partnered with several other organizations to provide a music therapy program at the Aberdeen. Palliative care among an older demographic in the county presents its own challenges. 

“We have many people whose children would like to be more involved but they no longer live in the area. They may be at far too great a distance or they may be relatively close but still too far to manage the day to day issues.”

While many people hope to be at home until they die, it is not always possible

“Again, it depends on the illness and circumstances. Sometimes home just isn’t the best place to be.”

Disney’s knowledge of palliative care has grown to be personal. Most recently, she lost a dear friend following a period of palliative care. 

“She allowed me to walk her journey with her. There is an honesty and a realism that comes at that stage of life and I found it a privilege to share that. There is sorrow, of course, but not all was sad. In fact we had a lot of laughter in palliative care, sometimes at the macabre circumstances and sometimes just among family and friends.”

Trinity United Church has recently provided space for a palliative care group where persons with various illnesses can share their stories with others in the same situation. 

“It is another level of support that is available. With a variety of supports, stresses are often relieved, appetites often return and laughter comes back. Support often seems to lengthen the lifetime.”

The possibilities for hospice care in the community are something the society has considered. 

“The discussion is ongoing but I feel hospice is a concept of care, not just a free-standing building. A lot of countries with free-standing buildings are gradually closing them so we have to look at other models.”

Mostly, though, Disney believes, we must come to terms with the inevitability of death. 

“The outcome is the same for all of us but many of us can’t talk about it. By raising awareness we hope we’re on the road to change. It is a shame to only learn of palliative care when you need it.”

It is also a deeply rewarding field in which to volunteer, she added. 

Anyone looking for information on palliative care, its programs or partnerships can email aberdeenpcs@gmail.com or inquire at Aberdeen Hospital.

Rosalie MacEachern is a Stellarton resident and freelance writer. She seeks out people who work behind the scenes on hobbies or jobs that they love the most. If you know someone you think she should profile in an upcoming article, she can be reached at r.maceachern@ns.sympatico.ca.

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