Hospice beds in short supply

By Dan Hilborn
Published May 31, 2006


When city councillor Gary Begin's father passed away peacefully on April 9 in the 16-bed hospice at St. Michael's Care Centre in south Burnaby, he received the best care and service available in the Fraser Health Authority.

He had nurses who attended to his every need, doctors who specialized in the care of the terminally ill and an overall positive atmosphere created by a team of dedicated health-care professionals who helped to ease his transition to "that next unknown life," said his son.

But that still wasn't good enough for the younger Begin, who also serves as chair of the board of directors at St. Michael's.

For one entire week before 86-year-old Eugene Begin was admitted to the hospice, the terminally ill senior was forced to wait in Burnaby Hospital for one of those 16 hospice beds to open.

And now the son, a volunteer leader in Burnaby's non-profit health-care sector, is speaking up about the need for more hospice and palliative care beds in the city.

"When my father was admitted to hospital for his last visit, he was classified as needing palliative care," Begin said. "He was classified to go to St. Michael's for his last two days, but, as it happened, (the hospice) was full.

"They were chockablock full."

Even though his father was able to get into a hospice bed for the final two days of his life, Begin said the experience shows a dire need for more hospice beds in Burnaby.

The issue is one of quantity, not quality, said Begin, who also has 25 years of combined service on Burnaby city council and school board.

"(My father) was well taken care of all the way through," said Begin, who noted that Burnaby Hospital dealt with a variety of unusual circumstances while his father was in their care. One irregularity was an outbreak of Norwalk virus that forced his father to stay in the emergency department for three days.

"They didn't have beds to transport him out of emergency. For elderly people, I think they deserve more than that," Begin said. "There should be more facilities available."

Another problem arose when Begin's father was forced to share a medical room with two other patients, including one who was "fairly active and noisy," Begin said. "When you're in your dying days, that doesn't always make it easy."

But Begin should not get his hopes up too high, said Carolyn Tayler, director of hospice, palliative and end of life care for the health authority.

Burnaby currently is home to the 16-bed hospice at St. Michael's and a dedicated 11-bed 'specialty palliative ward' at Burnaby Hospital, meaning the city is probably better served for end-of- life care than any other community in the health region, Tayler said.

Burnaby probably won't see any more hospice or palliative care beds built until the year 2015 or 2020, Tayler said.

The only two other hospices in the region are a 10-bed unit that opened three years ago near Eagle Ridge Hospital in Port Moody, and another 10-bed unit in New Westminster's Queens Park Hospital, she said.

And while there are long-term plans to open hospices in every community in the Fraser Health Authority - a region that stretches from Burnaby to Boston Bar - the short-term plan is to put more resources into helping families care for a terminally ill relative at home, Tayler said.

"We know the majority of time spent by palliative patients is at home," Tayler said. "So now we need to look at supporting those patients at home."

And there are lots of people caring for a terminally ill patient at home. While there are currently 36 hospice beds and 11 hospital- based palliative care beds in the Fraser Health region, there are an additional 600 patients receiving care from a friend or relative in the home, Tayler said.

"Palliative home care has been available for many years, and certainly it's been strengthened over the past couple of years through the provincial benefits program," Tayler said.

She is also confident that home care is an appropriate method for delivering palliative care services.

Families who have a loved one registered as a home-palliative- care patient are eligible to receive supplies, equipment and medication for the final month of life.

They also receive the support of a unique tele-nursing program that offers free advice to families that are caring for a terminally ill relative at home. Dubbed the hospice palliative care telenursing program, the program will receive the second Celebration of Medicare Award to be presented by the New Health Professionals Network in Ottawa early next month. (see sidebar)

"This means patients have greater access to advice and service," Tayler said.

And despite the delays in getting Begin's father admitted into the St. Michael's hospice, Tayler is convinced the region has enough dedicated hospice and palliative care beds.

"We have basically no wait list for our hospice beds," she said. "It might be that every once in a while people have to wait for a day or two, but we estimate that one third of patients at end of life can be cared for in our hospice beds."

"Each community is different, but we estimated that in some communities, about 35 per cent of patients are receiving care and dying at home."

But Begin believes that keeping a terminally ill patient at home in the care of a relative or some other untrained person is simply bad medicine. And even though the award-winning phone line offers the assistance and support of both trained nurses and on-call physicians, the potential for things to go wrong is simply too great to leave the work to untrained family members, he said.

When it comes to end-of life service, Begin believes most families would choose to have their loved ones taken care of in a facility rather than at home.

"I know I'm not equipped to do that kind of palliative care at home and I don't feel comfortable doing it," he said. "I'm more at ease when my loved one is in a care facility with trained people there to take care of him.

"That's one of the reasons I was hoping to get my dad into St. Michael's," he said. "They have excellent nursing staff and aide staff, and they were able to monitor him and put him at ease so on that final day, he wasn't fretting or fighting. He was just able to go.

"That can only happen when you have nursing staff who understand the people and help them walk into that next unknown life," he said.

The call for more hospice beds is supported by Peggy Eburne, co- chair of the B.C. Nurse's Union Fraser North division.

"There's never enough, that's true," said Eburne. "You will always find people who fall through the cracks, and I attribute that to a lack of beds."

While Eburne agrees that there are more palliative care services in Fraser Health today than there was when St. Mary's Hospital in New Westminster was closed and its palliative ward was transferred to Queens Park Hospital, she said those new services are not enough to keep pace with the growing needs of our rapidly aging population.

"If you're lucky, you get into the hospice. If not, you die in a medical ward with all the problems that ensue there," she said. "And I think you'll also hear stories from family members who are still unable to access services in a timely manner.

"Even though there is increased support there is never enough - never."

Eburne said another piece of the palliative care puzzle is the recent proliferation of privately built 'assisted living units', which she claimed are not proper replacements for the many long- term care facilities that were closed around the province in the past decade, such as the former Cascades residence at Burnaby Hospital.

"Assisted living is not a medical model, it's a housing model," she said. "This started with the closure of long-term care facilities, and you can't possibly keep doing that and not expect there's going to be fallout."

CELEBRATING MEDICARE

A unique program that offers over-the-phone advice to families caring for a terminally ill loved one at home in the Fraser Health Authority has won a national award.

The New Health Professional Network, which describes itself as dedicated to a publicly funded, single-tiered health care system, has chosen the hospice palliative care telenursing project as the recipient of its second Celebration of Medicare Award.

The award will be handed out at a ceremony at the University of Ottawa on June 8.

The telenursing program was chosen because it demonstrates "a strong interdisciplinary health professional focus, provision of optimal patient care, and overall excellence in innovation in Home Care within Medicare," said a statement from the awards committee.

But while the Fraser Health Authority is applauding the program today, it fought against its implementation when it was first proposed by the B.C. Nurses Union, says union spokesperson Peggy Eburne.

The union suggested the telenursing line as a counterproposal to a health authority plan that would have seen community nurses kept on-call for 24-hours a day to assist home palliative care patients.

Today, the phone service receives about one or two calls per day from the estimated 600 families in region that have a terminally ill relative at home. Plans are also being reviewed that could expand the service to other health regions around the province.

"They said it would never work," Eburne chuckled.