The Geography of Dying: People shouldn’t have to cross county lines to seek palliative care, writes Megan Venner    Across Nova Scotia this year an estimated 5,600 people will be diagnosed with cancer and 2,600 may die. This is the highest rate in Canada.[1] Many of these people, and others with terminal illnesses, are dying needlessly in hospital when they should be receiving palliative care, say advocates. The Canadian Hospice Palliative Care Association says that of the 180,000 or more patients who die in hospital or long-term care facilities each year, one in six need palliative care[2]. But it is not widely available. They estimate that such services are available to 5-15 per cent of Canadian adults and just three per cent of children.[3]    In its continuing care strategy released in 2006, the government of Nova Scotia recognized that treating patients in hospital – who ought to be treated at home – “adds unnecessary cost and pressure to the health system and has a negative impact on families, volunteer organizations, and the quality of life for many people.”   “It is expensive to die in hospital, very expensive,” says the president of the Nova Scotia Hospice Palliative Care Association, Krista McMullin. “If we put the resources where they need to be, to have people die in the community with the supports, then it’s certainly going to cost the department of health less money and people will be more comfortable.”   McMullin’s organization is calling on the Nova Scotia government to create a province-wide palliative care program. It argues the current regionalized system cannot provide the services Nova Scotians need.   In Nova Scotia, palliative care services are funded and delivered within each health district. This decentralized system means the level of service can vary with where the patient lives. The result is frustration – among health care providers, patients and families. David Henderson is a palliative care doctor in the area served by the Colchester East Hants district health authority. “We had a lady from Yarmouth who came here to live with her son just so she could get care,” he said. “She ended up dying [here] despite the fact she wanted to go home, but there was no one there to look after her.” Henderson does not hide the frustration in his voice when he talks about regional disparities. “So that’s been our universal health care in this province at its best.”   Colchester East Hants is considered by many to be the Cadillac of palliative care in the province, with a doctor, palliative care nurses and even a part-time social worker on the team. But other regions are struggling with much less. The Annapolis Valley has a doctor and a palliative care coordinator, but no nurses – something McMullin argues is unworkable and not sustainable.   “Imagine if you’re a rural physician and trying to meet the needs of all the clients, when there’s no nurse to zero in on the issue of the day,” she says. “A palliative care doctor cannot do the patients justice; the nurses are the ones on the ground, they’re the front line staff, if you will. They’re the ones seeing the patients on a regular basis and they’re in the home. They know the full picture.”   Another major disparity is in coverage for medication. As the result of a pilot project in 1997, people dying at home in Pictou, Colchester and Cumberland counties have their drugs covered, but terminally ill patients outside this region must be in hospital for their drugs to be covered.   “It shouldn’t matter where you live what standard of care you get,” says McMullin. “For instance, we have good pre-natal care through public health throughout the province, which is fantastic and great, and we should have, but at the other end of the spectrum, why shouldn’t we have good palliative care? In my mind, it’s simple.” McMullin also says there is no district delivering the right level of care. “There isn’t one program in the province that has a full-time social worker, not one.”   In 2005, the department of health initiated a review of services, the Hospice Palliative Care Project, which recommended a provincial approach to palliative care. McMullin says the first step would be to create a palliative care section within the department. The second would be to create fully staffed interdisciplinary teams, because, at the least, patients need a doctor, nurses, a social worker and a pharmacist. McMullin says spiritual support should also be available.   Palliative care professionals around the country support the need for interdisciplinary teams. Dr. Larry Librach, a palliative care doctor at Toronto’s Mount Sinai Hospital and vice-president of the Canadian Hospice Palliative Care Association, says “that’s the best way to deliver medical care in general, but definitely the best way to deliver palliative care.” Librach says that while palliative care is being integrated into medical training, family doctors don’t have the experience or knowledge in pain control, for example, to handle it alone. “We have to work with our primary care providers and provide them with the expert back-up that will allow them to work and make sure they’re nurtured to do the job.”   But in Nova Scotia, says Henderson, “there are patients basically dying on waiting lists.” Henderson is fed up with what he sees as a lack of political will. In 2004, Canada’s First Ministers signed a health accord promising a base level of home palliative care services. “The money came, the minister signed off on it, our province has had that money and done nothing with it. Now, in the last election, they promised to do some stuff and they’re again really done nothing. It’s just so frustrating.”   Kathy Greenwood, who directs services for the continuing care branch of the department, rejects the claim little is being done. “I can understand that there is frustration, but we are committed to moving this palliative care plan forward.” As part of its continuing care strategy, the government has a three-phase plan for palliative care. It has already put more than $3 million into increasing home care allowances in the last three months of life and it plans to expand coverage for medications to the whole province. The third phase will include the development of interdisciplinary palliative care teams, although the details are not worked out. Greenwood says more study needs to be done, “but we’re hopeful we’ll be able to move to that phase later this fall.” In summer, the province was in the process of hiring a palliative care coordinator to work within the department – meeting one of the demands of the provincial palliative care association.   Henderson says the department of health has approached the whole thing backwards. It should have begun with the interdisciplinary teams and built a program from a solid foundation. He also says limiting home care allowances to the last three months of a person’s life ties the hands of doctors, patients and families. “How are you going to decide when they’re in the last three months of life?” He says many family doctors are not comfortable signing a document claiming a person has only three months to live – the family doesn’t want to hear it and they certainly don’t want it written on a chart. “What about the person who’s poor and has no insurance and has six months to live?  What are they supposed to do? They’re going to suffer faster. They’re probably going to end up being in their last three months of life, because they can’t get the appropriate care they need. There’s no real thought process being put into it. To me, it’s all politics.”   Henderson isn’t alone in his frustration – there is an ad hoc approach to palliative care services across the country. “I think the Nova Scotia experience probably reflects what’s going on in a great part of the country,” says Librach. He says British Columbia, Alberta and Manitoba have palliative care programs, but “the reality is that in all jurisdictions in Canada we still have spotty coverage and not enough resources to meet the need. The Nova Scotia experience is not unusual.” Senator Sharon Carstairs, who spent two years as a federal cabinet minister with responsibility for palliative care, maintains the solution lies with the federal government. The Romanow and Kirby reports, two federal reviews of the public health care system, agreed, calling for substantial new federal funding for palliative care. Librach disagrees. “I don’t think it’s a federal responsibility. It truly is a provincial responsibility.”   No matter whose responsibility it is to heal the system, advocates agree change will only come as the public demands it. “One of the problems with advocacy is still our taboo around thinking about or talking about dying,” says Librach. “I think we just need to do a better job of informing the public.” But palliative care is a tough issue to promote, because the people who have most to say are no longer there to speak, and their families are often too overcome with grief to take their place.     1.Canadian Cancer Statistics 2007.  2. Canadian Hospice Palliative Care Association (CHPCA). Fact Sheet – Hospice Palliative Care in Canada. April 2007. 3. Sharon Carstairs. Still Not There. Quality End of Life Care: A Progress Report, June 2005.