This is the last in a three-part series on the Dr. Bob Kemp Centre for Hospice Palliative Care and hospice care in Ontario.
By Abigail Cukier
Jan Nichols’ father died in a hospital.
“Nurses would wake him up to check his blood pressure. Turn those bright lights on. It didn’t make sense to me,” Nichols said. “It seemed to me like it was almost invasive. It seemed like a waste of energy. At the end of his life, he was interrupted. I didn’t like it. I can still see those bright lights.”
Now, Nichols is director of development for the Dr. Bob Kemp Centre for Hospice Palliative Care. It’s his job to ensure the hospice raises enough funds to stay open and help people die in peace.
It’s not an easy job. The hospice must raise $100,000 a month just to stay open.
It costs $1.6 million a year to operate a residential hospice and the Ministry of Health and Long-Term Care provides $940,000 for nurses and personal support workers. Money for everything else – including housekeeping, patient food, support staff and electricity is fundraised. The Bob Kemp hospice has 17 staff – including administrative and support staff and a music therapist – and 250 volunteers.
Every service, including the residential hospice, is free to clients.
Funds are raised through annual events like Hike for Hospice and Tinsel, Tuxedos and Tapas. Nichols also encourages people to include the hospice in their will or to have the hospice as a life insurance beneficiary, benefitting the hospice and providing a tax savings.
“There are a lot of worthwhile organizations and it’s a tough economy,” Nichols said. “It’s not easy asking for money, but it’s something that has to be done.
Through this fundraising, we are able to be here, but it’s not like we are putting extra money in the bank. Like for example, if the roof leaks.”
One obstacle to fundraising is that many people don’t know what hospice is.
Hospice palliative care is not used to describe a building or program but a philosophy of care that addresses a client’s emotional and physical needs. Hospice care also encompasses the person’s loved ones and emphasizes quality of life.
The Bob Kemp hospice includes a day program, volunteer visiting, grief counseling and the residential hospice.
Not including Quebec, Canada has 60 residential hospices and 27 are in Ontario. British Columbia has 18, Alberta has 10, Manitoba has two and Saskatchewan, the Yukon and New Brunswick each have one.
“We have quite a robust system compared to other provinces,” said Rick Firth, executive director of Hospice Palliative Care Ontario. “Ontario has had the largest volunteer-based hospice system in the country for 15 years.”
Even before the Ontario government announced funding for residential hospices in 2005, the province had 79 visiting home hospice organizations.
But even Ontario needs to do better.
While Hamilton is lucky to have a hospice, this represents a rate of 10 beds for 500,000 people. The Fraser Health Authority in British Columbia found that the goal should be seven hospice beds per 100,000 people.
According to this formula, Ontario would need 910 beds. Even with two more hospices under construction and 17 being planned, when this is complete, Ontario will have 346 beds.
While communities must raise funds for the capital costs to build a hospice, the health ministry in 2005, announced $115.5 million for operational funding of residential hospices. Last year, the ministry announced a $7-million increase to that funding.
The government is also trying to help more people die at home.
Over the next three years, Ontario will add three million more hours of personal support worker care at home, which includes personal hygiene, light housework and procedures such as changing dressings.
And there are other initiatives. A Brantford pilot project teams a social worker, physician and nurse to deliver pain management and other services in patients’ homes.
Firth said so far it has resulted in fewer emergency room visits and hospital admissions.
“This is not saving money, but it is freeing resources for others who would be waiting in the ER or for a hospital bed.”
While most people would like to stay at home, in 2007, 70 per cent of people in Canada died in a long-term care centre or acute care hospital, according to Sharon Baxter, executive director of the Canadian Hospice Palliative Care Association.
She says home or hospice is the best place for a person to be.
She would like to see a less fragmented health care system where primary care physicians know more about palliative care, to whom to refer patients and how to assess when a patient is nearing the end of life.
“Fewer than 35 per cent of patients are referred to palliative care at the end of life and 80 per cent of those are cancer patients,” she said. “We have to think about how to assist all of those other Canadians.
“When a palliative patient is rushed to the hospital, it’s a failure of our system to plan for the future.”
Solutions needed for more hospice care
While hospice palliative care may be ideal, it is not without its challenges.
Fragmented system: Fewer than 35 per cent of patients are referred to palliative care at the end of life. In many cases, physicians and other health care providers don’t work together to care for the patient. Patients and their families don’t know about all available resources.
Primary care physicians need to be educated about palliative care and discuss it with patients.
Those providing palliative care need to work as a team to ensure patients and families receive the right care and avoid having to repeat assessments and deal with multiple case workers.
Rural care: These communities don’t have a large enough population to raise the funds needed to keep a hospice open.
Some rural areas don’t have nurses to staff a hospice. In other cases, volunteers may drive for three hours to see clients in their homes.
One option being looked at is remote, online programs to train volunteers closer to home.
Family caregiver support: If a person stays at home, his loved ones must juggle home care appointments, medication, arrange family members to work care shifts, plus play hostess for visitors.
Programs to ease caregiver stress could include a less fragmented, supportive home care system, a 1-800 helpline, physician home visits and having a physician on call.