By Richard McGuire
One of the biggest misconceptions about palliative care is that it’s for people at the very end of their lives, says Lisa Calder, program co-ordinator with the Desert Valley Hospice Society (DVHS).
“People think they don’t qualify to get support from hospice until they are in the last month or two of life,” said Calder. “By that time, they are often very ill and fatigued and their caregivers may be very exhausted and burned out… We would like to see people access palliative care support earlier.”
DVHS volunteers can get involved with people who have serious illnesses that they may cope with for years, as well as with people who are closer to the end of life and may only have months to a year to live, she said.
“None of us know when it’s going to be our time to go,” she said. “We think we have a good idea, but the predictions about prognosis are often not very accurate. So one of the misconceptions is that people have to wait to receive this type of support.”
There are different stages of the palliative journey, said Ken Clarke, DVHS president, in a presentation earlier this year.
“Palliative care may happen as soon as a serious illness is diagnosed,” said Clarke. “The palliative approach to care involves symptom management, accessing community supports, and maximizing the quality of life for the client and the family or caregiver.”
End-of-life care follows when the patient has months or weeks to live, medical treatments are ongoing and hospice care becomes appropriate, added Pat Wycherley, secretary to the DVHS board of directors, who accompnanied Clarke at the presentation.
Clarke and Wycherley described the stages that people go through from the time of diagnosis with a serious or terminal illness to the final preparation to embrace death.
“In hospice palliative care, we help patients and their families to address the physical, their psychological, social, spiritual and very practical issues,” said Clarke.
“At some point in the journey, there’s a shift from active treatment to comfort care,” said Wycherley. “Treatment of symptoms and pain management is still a priority, but as the illness progresses, there is more focus on comfort and support.”
Calder says there’s also a common misconception about the role of the hospice, which doesn’t provide beds for the terminally ill, but rather provides support.
“People think of palliative care or hospice as being a place to go to die as opposed to a way of supporting people,” said Calder. “It’s often very confusing for people in terms of what we’re doing here, because we don’t have a residential model. We have a community support model, so we will go out to wherever people are. It could be the hospital, or the nursing homes, or into their homes, to provide support.”
Their facility at 22 Jonagold Place in Osoyoos is used to provide programs, such as the Supportive Care Program introduced in the fall of 2016.
That program brings together people dealing with serious illnesses, as well as their spouses and family members.
The facility also provides short-term respite, allowing caregivers to take a few hours off from caring for the patient.
But a lot of the work that DVHS does is outside the facility, with roughly 25 trained volunteers serving Osoyoos, Oliver and more recently Okanagan Falls.
“We’ve had volunteers who have been with us for over 10 years and some have been with the hospice since the very beginning,” said Calder. “We have others who moved here and we have some volunteers who are only here six months of the year, but when they are in town, they volunteer with us.”
Many volunteers come with past experience and wisdom even before they do their training. Some are retired nurses or they may have a connection to palliative care, nursing, teaching or social work.
“It takes a special person to be willing to practice compassion in the community,” said Calder.
Although the focus has been to provide support and practical assistance, Clarke says DVHS also advocates for a vision of providing for dedicated hospice space in local communities.
Currently there are six designated short-term stay beds in the area at other facilities such as South Okanagan General Hospital, Mariposa Gardens and Sunnybank Retirement Centre. But these are not dedicated beds.
“So you may or may not get a palliative bed if you need it,” said Clarke. “They are not the environment that we would like to see for people to have that calming environment at the end of life, so there’s still work to do.”
Nonetheless, Interior Health has made it clear there is no funding for standalone hospices and the cost to provide these would be prohibitive without funding from Interior Health, Clarke said.
The more immediate goal, suggests Calder, would be to provide increased respite care, giving caregivers a break. But even that requires money that isn’t there.
DVHS needs continuing support from the community to provide the quality of care it provides, including financial support, Calder said.
“We need their (community) support in many ways,” she said. “We need their voice. We need them to also speak up to those in government and in healthcare, that this is a concern of theirs as citizens of this community, and that this is important to them and to their healthcare.”