When Jodie Buchsdruecker's 59 year-old mom lay dying of colo-rectal cancer in Edmonton's U of A hospital 13 years ago, calls for a palliative bed went unanswered. Though nurses did everything they could to provide palliative sedation and pain management, Buchsdruecker said her mom struggled, spending seven long weeks on a busy ward she said wasn't equipped to deal with that type of end-of-life suffering. "At night, my sister and I would beg the nurses to help ease her pain," she said. "But mom never left the unit. They never found us a palliative bed."
Fast forward almost a decade, when Buchsdruecker's uncle also received a palliative cancer diagnosis. The 74 year-old Calgary resident had more time to prepare for his end-of-life care, choosing to spend what were his final two weeks at the Dulcina Hospice, a 26-bed residential space within St. Marguerite Manor, a Covenant Care supportive living facility.
"It was the opposite of mom's situation. My uncle literally felt at home, with space to read or go outside, visit and have meals with family. There was pain control/sedation if needed. It was a quiet, peaceful death," said Buchsdruecker, who now teaches at Calgary's Rotary Flames House, giving respite to palliative kids.
"But death and dying is still a taboo subject--people aren't comfortable talking about it."
Palliative care societies grow across the province
Jillian Lawton, a Registered Nurse in Rocky Mountain House, sees the difficulty many people have addressing end-of-life care, bereavement, funerals etc. so she's all the more impressed at how the town has come together to fill the need for a local hospice. As a volunteer board member with the Compassionate Care Hospice Society, Lawton helped spearhead the creation of the first dedicated hospice suite for the town of 7,500 -- a furnished two-bedroom unit within the Good Samaritan Society Clearwater Centre.
"People were passionate about creating the suite, because they understood that it's about comfort and care; allowing palliative patients time with loved ones and physical, emotional and spiritual support in a local setting. There are hospices in Red Deer and Olds, but it can be overwhelming to travel and be away from home. We wanted to have home-like care and supports in our own community," said Lawton.
The two-bed suite with kitchen, bath, living room, patio (and medical equipment) is fully-furnished for a patient and up to three family members. Lawton said community members have stepped up with comfort-care items too, creating art work, quilts--even a blanket warmer--all to make a peaceful, homey space. Since opening last fall, the suite has been used a couple of times, and due to the nature of a palliative diagnosis, the stay can be anywhere from a few days to a few months.
Southern Alberta embraces hospice concept
Palliative care and hospices aren't new, but they need funding and awareness to grow in numbers in Western Canada. Of the 255 palliative beds available across Alberta, most are located in hospital or long-term care settings, and most (121) are in the Calgary zone. A few stand-alone hospices exist (Okotoks, Red Deer, Calgary) and Edmonton's first is now being built: the Pilgrims Hospice Society's 12-suite Roozen Family Hospice Centre set to open in 2021.
Carole Anctil-Michalyshyn, Chair of the Pilgrim's Hospice Building Steering Committee, said spending the last five days of her dad's life with him, her brother and mom at a residential hospice in Parksville B.C. demonstrated the value of this type of end-of-life care.
"My mom said staff treated dad like he was their father at the hospice," she said. "Having experienced first-hand the expertise, compassion and support offered in a residential hospice, I better appreciate the gift we are bringing to Edmonton."
The wish to die at home
Kristi Puchbauer, Executive Director of the Alberta Hospice Palliative Care Association (AHPCA), said surveys show some 80 per cent of Albertans would prefer to die at home, even though as few as 15 per cent of people will. Dying in hospital is the reality for most of us, said Puchbauer.
"How do we support people in the wish to die at home, or as close to it as possible? Puchbauer asked. "Dying at home can be draining for family and the caregiver: a hospice offers 24/7 care in a home-like setting. There are over 50 societies and palliative groups across Alberta working to offer this type of care in their communities. But it takes sustained financial committments to create and maintain these suites."
Funded primarily by AHS, those seeking a palliative or hospice bed usually get referred by a physician or through home care. Communities raise funds for suites and related support services such as bereavement counselling, through campaigns like Calgary's annual Hike for Hospice, which serves as a fundraising and awareness event for facilities in southern Alberta.
"Palliative care professionals can open up conversations around end-of-life issues within families too," added Lawton. "People aren't always aware of advanced care planning, personal directives or follow-up supports for family members. We're not trying to re-invent the wheel, but better serve our community's needs around death and dying with options for the patient and all family members."
Family caregivers an essential component of care
Since COVID-19, the Canadian Hopsice Palliative Care Association (CHPCA) has described too many stories of family caregivers unable to perform their duties due to restrictions on end-of-life visitations. As a result, a petition called the Declaration of Family Caregiver Rights and Responsibilities, designed to strengthen the role of family caregivers, is being promoted through caregivers4change.com.
According to Sharon Baxter, Executive Director of CHPCA, health care organizations are encouraged to support the implementation of a family caregiver policy, separate from a visitor policy, that will avoid the restriction and harm caused when family caregivers are excluded from the bedside.
Government funding will improve access to palliative care
In response to its commitment for improved palliative care access, the Alberta government is also providing $5 million to the Covenant Health Palliative Institute and $1 million to the AHPCA. These funds will establish in-person and online support, develop Alberta's first telephone grief support line and expand workshops on palliative care.
"By raising public awareness, we can help more Albertans learn how and where to access resources, trained professionals and kind hands who can help guide them through the stress, fear and sadness of this difficult time," Puchbauer said.