"I remember one day just standing at the elevator outside the doctor's office and crying uncontrollably because I felt so helpless," Jacqueline McGowan recalled.
Other days she was reduced to "falling on my knees and praying to God for relief."
As Ms. McGowan, a financial analyst, cared for her mother Gwendolyn, who was suffering from multiple myeloma, the constant demands provoked a lot of tears and prayers. They also stripped away her savings and her energies.
"When you care for a loved one with a terminal illness, it's emotionally taxing, physically exhausting, financially draining," said Ms. McGowan, who lives in Toronto.
It is a situation all too familiar to Canadians caring for loved ones with cancer, according to a new report commissioned by the Canadian Cancer Society .
While cancer is the country's biggest killer, the end-of-life care offered is tremendously uneven and hard to access, it concludes.
"Right now, in Canada we have a patchwork approach to providing care at the end of life. This means that some cancer patients and their families are not getting the support they need during a very difficult time," said Heather Chappell, director of Cancer Control Policy at the CCS.
"Uniform, high-quality support for any person dying of cancer should be available no matter where they live," she said.
Caring for a loved one with cancer results in more than $1,000 a month in additional expenses, not including lost wages, the research shows. The added costs include drugs, medical supplies, special foods and other expenses related to cancer treatment.
Caregivers also commit, on average, 2.6 hours a day to the patient, in addition to their other duties, and the outside help varies tremendously according to where a person lives.
The 18-page report, which is included as a special section in the annual Canadian Cancer Statistics, concludes that poor end-of-life care for cancer patients is due to four principal factors:
* The inadequacy of programs that allow people to die at home when it is their preference;
* Insufficient use of palliative-care services, largely because patients are referred to those services too late;
* Families not knowing how to access end-of-life care and being overwhelmed by psychosocial and financial burdens;
* A lack of basic data and research on how to minimize the pain and suffering of patients with terminal cancer.
"End-of-life care has to become part of the conversation," said Camilla Zimmermann, the head of palliative care at Princess Margaret Hospital in Toronto. "Right now, it's up to chance whether you get good palliative care or not."
The five-year for survival rate for all cancers combined is 59 per cent. Practically speaking, that means that, within five years of diagnosis, more than 40 per cent of cancer patients will die and that reality needs to be incorporated in their care, Dr. Zimmermann said.
Currently, there tends to be a handover from the oncologist to the palliative-care team in the final days of life, when death is imminent. Instead, cancer patients should be getting regular consults on pain and symptom-management that leads naturally to discussion of end-of-life care when a cancer becomes untreatable, Dr. Zimmermann said.
There also needs to be various types of assistance offered to family caregivers during the process - homecare, respite care, and palliative care (either at home, at a hospice or in hospital), she said.
"I don't know if there's a 'good death' - that's a weird expression," Dr. Zimmermann said. "But there is a bad death - dying in pain without people you love around you and in psychological, physical and spiritual distress.
"We can prevent a bad death with good palliative care."
In addition to bolstering end-of-life care, the new report calls for complementary measures to ease the burden of caregivers, including expanding compassionate-care benefits so that family caregivers can receive Employment Insurance benefits for up to 26 weeks, not the current six weeks, and establishing a caregiver tax benefit that would be paid to assist lower-income caregivers with additional costs.
An estimated 173,800 new cases of cancer will be diagnosed in Canada in 2010, according to the latest projections. (This does not include 75,500 cases of non-melanoma skin cancer.)
At least 76,200 Canadians will die of cancer this year. The leading cancer killer, by far, remains lung cancer, which will take an estimated 20,600 lives this year. Next is colorectal cancer (9,100 deaths), then breast cancer (5,400) and prostate cancer (4,300).
André Picard