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Ideas

at the forefront of a growing need Dr. Ina Cummings and palliative care in Canada

by Patricia Enborg | October 19, 2007

Preparing for the birth of a child is a joyous event with detailed plans made months in advance. Setting up a nursery and buying baby clothes are just a few of the things considered before the arrival of a baby.

At the other end of the life cycle, few people plan how to deal with a loved one who’s dying.

That’s where palliative care comes in. It’s the field of medicine that tends to the dying - providing pain management and looking after the emotional needs of the patient and their family or caregiver. “It’s really looking at care from the comfort perspective. Looking at how can you help this person who can’t be cured of their disease, live as fully as possible for however long they have to live,” says Dr. Ina Cummings of Pointe Claire, Quebec.

It’s a medical specialty she knows well. She worked with Dr. Balfour Mount to create one of the first palliative care units in Canada – at Montreal’s Royal Victoria Hospital in 1975. A family physician since 1967, Dr. Cummings had been considering further training when Dr. Mount approached her in the early 1970s about setting up the unit.

A urological surgeon, Dr. Mount had become interested in the work of American physician, Dr. Elisabeth Kubler-Ross. Her pioneering book, On Death and Dying, examined the experiences of people who were terminally ill.

Dr. Mount’s growing interest in palliative care took him to St. Christopher’s Hospice in London, England – site of the first modern hospice in the world. What he learned there inspired him to set up the palliative care program at the Royal Victoria Hospital.

Dr. Cummings was involved in the daily care of patients, then she became the director of the unit in 1984. She played a major role in the field, developing a clinical model for a university teaching hospital setting and co-editing the first Canadian manual of palliative care.

Meeting the multitude of needs of those who are dying is a constant challenge. Dr. Cummings says the scope of those needs is huge, requiring a variety of people from various backgrounds to address them as a team. “Certainly there are medical needs, but then there are all of the psycho/social needs ... Obviously you never can meet all the needs, so you have to try and look at the greatest, and try and meet the priority of problems.”

The need for end-of-life care is growing as Canada's population ages. The Canadian Hospice Palliative Care Association (CHPCA) estimates that demand for hospice palliative care services will dramatically increase over the next 40 years as a result.

Of the more than 259,000 Canadians who die each year, the CHPCA says about 62% required access to hospice palliative care services.

Why such a demand? Dr. Cummings says, with people living longer, there's going to be a higher incidence of chronic disease and of cancer, because cancer tends to occur more frequently in older people. She says the demand for palliative care will only grow when today's baby boomers become elderly.

Palliative care is offered through a hospital setting or in a private hospice in every region of Canada. However, there is no national strategy yet in place to coordinate care. Dr. Cummings says hospital-based programs focus on shorter-term issues and acute problems that can only be addressed in that setting. A private hospice provides a more homelike and relaxed environment than is available in a hospital.

Demand is greater than today's resources can handle. And with the restructuring of health care, the CHPCA says the number of palliative care beds in institutions has been cut. That leaves community-based agencies and families to cope with the challenge of caring for their dying loved ones.

It’s not easy. The Canadian Home Care Human Resources Study, done in 2003, shows that 65% of family and informal caregivers are under the age of 50. Over half of them (64%) work full-time, part-time or are self-employed.

Quite often the burden of care falls to women. Often, they must cope with an elderly parent who’s dying while looking after young children. Factor in a job and you have a recipe for incredible stress.

“How do you care for someone at home and hold down a job and care for young children when the rest of your family is probably spread out across the continent just given our migratory, mobile generation? It’s a very major challenge and quite overwhelming for a lot of people,” says Dr. Cummings.

Despite the increasing need for palliative care, she says it’s been hard to sell to the public. “There’s still a major hesitation because none of us really want to think about the possibility that life can end. It’s not something we want to face until we absolutely have to.”

She says that only changes when someone has had a personal life experience and realizes just what the needs are and what palliative care can do for them.

So how much progress has been made since 1975?

Dr. Cummings says when you look at the history of medicine, changes can be very slow, “So using that perspective, palliative care has progressed quite quickly. But if you look at what exists in palliative care by way of resources, against the need currently, it’s still in the very early days.”

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