Abstract
Pediatric Decision-Making
A prominent national Canadian newspaper reported two patient cases that illustrate the current state of decision-making in pediatric end-of-life care. In one case, parents who wanted their brain-injured baby to live, fought with a hospital that said they should withdraw support to let the child die. In another case, a hospital ethics committee advocated for continuing artificial feeding when the family decided to discontinue it. It's clearly not just a Canadian issue, rather it's a Canadian strength to have the press illustrate the challenges that need to be sorted out. In a related newspaper story in the country, a leading physician pointed out that these kinds of disputes are relatively rare; most of the time, difficult decisions can be reached without protracted dispute. But, when there is a dispute, it is inevitably emotional. It is reassuring to have the challenges of day-to-day clinical care reflected in the press.
Text of Obituaries
In the United States the word “death” is difficult to find in published death notices. If you read obituaries carefully, you'll find many people in them didn't exactly die. Most of them “passed away.” Some “entered into rest.” Others “left the world in God's hands.” In some, only the appearance in the obituary section of the newspaper suggests that the patient died—nothing in the text refers to the event. Much has been made of U.S. culture being “death denying,” but it is usually inferred from other behaviors. This observation suggests a quantitative approach to measuring how far education and culture change have made death acceptable among the public. In other words, the more the word “death” appears in obituaries, the more it is an accepted part of life.
For-Profit Hospice in Scotland
Europe's largest public health board and a private developer were reported to have finalized a controversial land deal in Scotland. The National Health Service (NHS) in Scotland made a move to change the delivery of hospice services from a nonprofit agency to a for-profit agency. In other words, the Greater Glasgow & Clyde Health Board will make end-of-life care a business to be conducted for profit in order to achieve efficiencies. In the United States, at least half of the agencies that provide in-home and inpatient end-of-life care are organized as for-profit agencies, even though the vast majority of their funding comes from the federal government supplied by tax revenue. The robust emergence of for-profit companies, who are ethically bound to generate value for the share holders, has been an indication that the U.S. federal government must be paying too much for hospice care. That notwithstanding, there is an ethical issue of whether end-of-life care should be conducted for profit. This approach to funding public health care has been either controversial or anathema in the NHS. Is this a sign of things to come worldwide?
Palliative Care Omissions
In the Australian press, it was noted in a recent report that the “obsession” with curing sickness is leaving some terminally ill patients in Australia poorly cared for and unprepared for death. It was observed that 7 out 10 Australians die an “expected death” with doctors able to accurately predict the length of time they have left. But, it appears some doctors are afraid to tell patients they are dying and as a result are prescribing unsuitable care. In a country where, at least from the point of view of the rest of the world, palliative care is well established across the country, the report points out what else has to be done. It also makes the rest of us feel not quite so far behind.
Interestingly, in another Australian report, private homes in the state of Queensland will be used to care for the terminally ill. The Queensland government has moved to liberalize planning laws to ease pressure on overcrowded hospitals. The move, which could open up thousands of hospital beds, has been welcomed by palliative carers who say it will herald a more sensitive approach to caring for the dying.
Access to Palliative Care in Canada
It is generally accepted that the percentage of people living with a terminal illness who have access to palliative care varies greatly across the 10 provinces and 3 territories that make up the confederation of Canada. Ten years ago, a Canadian Senate subcommittee put the overall figure at 15%. Five years later, Senator Sharon Carstairs observed that health care providers estimated that “no more than 15% of Canadians” had access to palliative care. In 2007, the Canadian Institute for Health Information (CIHI) estimated that people living with a terminal illness in British Columbia, Alberta, Saskatchewan, and Manitoba were referred to palliative care programs and services 35%–37% of the time—if they were dying of cancer and had been hospitalized. This went to a low of 16% if it was not cancer and they had never been hospitalized. More recently, the Quality of End of Life Care Coalition of Canada stated “only a small portion of those who die receive palliative care.” Reporting on a Canada-wide study, a recent Université Laval press release estimated the proportion at 10%. The Canadian Hospice Palliative Care Association position: “At best, 35% of Canadians living with a terminal illness receive palliative care.” The CIHI report is the only statistically significant report that covers multiple jurisdictions. Access to pediatric palliative care? One study indicates that only a small percentage (5%–12%) of children who die in Canada receive specialized end-of-life care.
While the conclusion could be pessimistic, another way to view this kind of measurement is as a part of the national discourse. It is only with that kind of transparency that dissemination and implementation of patient services will occur. The rest of the world needs to take note and do likewise.