Palliative care inadequate for coming ‘silver tsunami’ concludes Hamilton report
Posted: May 3, 2018
(May 2, 2018)
By: Joanna Frketich, The Hamilton Spectator
Significant gaps in end-of-life care were found in a case study of Hamilton that concludes current infrastructure is inadequate to handle the palliative care needs of the “silver tsunami” of baby boomers drawing near.
The hospital remains the most common place where people die in the Hamilton Niagara Haldimand Brant Local Health Integration Network, reveals a report published on April 24 by Hamilton think tank and charity Cardus.
“In Hamilton there is still a significant gap between what we need and what we have,” concludes Cardus senior researcher Doug Sikkema in the case study. “In many ways, then, Hamilton seems to present a case in point of the national narrative.”
Two in five area deaths took place in acute care from April 1, 2012, to March 31, 2013, reports Cardus Health which researches Canadian end-of-life care.
Of those, 95 per cent were palliative patients, as opposed to those dying from significant trauma or injury.
Four out of five were seniors and the vast majority were admitted through the emergency department.
“Most Canadians are almost completely unaware where they will die and what they will be surrounded by is an acute-care setting,” Sikkema told The Spectator. “Sometimes that is unavoidable, but it’s also because they haven’t planned or there is just not the necessary infrastructure in place. … Death has been taken out of the community, out of the family and out of the home, and put into a medical, professional setting.”
Most worrisome is that 15 per cent of the patients who died in hospital were transferred from long-term care and three-quarters were living at home prior to being admitted to acute care.
“The failure to plan for a dignified death for people is really a glaring omission,” Natalie Mehra, executive director of the Ontario Health Coalition, told The Spectator. “I think that’s a reflection of the values and priorities of our society.”
Seven Hamilton health-care providers interviewed for the case study in the spring and summer of 2017 were blunt about some of the issues that contribute to end-of-life care being “disease driven” and “professionalized.”
One described home care for palliative patients as “pathetic.”
She said hospitals are in such a rush to get people home that their wishes can’t always be met, while hospices require referrals.
“Her frustration is that the lack of co-ordination, the fragmentation of services and the inability to put patients first results in numerous days of uncertainty for many elderly that could be avoided with a more streamlined, co-ordinated process,” states the report.
Others expressed frustration at the “disturbing trend” of fewer and fewer family doctors willing to do home visits.
“Almost 40 years ago every family doctor in town did house calls, but that’s changed over the years,” said a Dundas family doctor in the report. “We’ve started to believe that bigger hospitals are better and can take on this role. But I think this has moved us in the wrong direction.”
St. Peter’s Hospital has 60 palliative-care beds, more than any other Canadian hospital notes the case study. But 80 per cent are used for cancer care and not necessarily for end-of-life patients.
“In the next 15 to 20 years, we do not have what we need to support the number of people that are going to be dying given the baby boomer generation,” said one Hamilton end-of-life provider interviewed for the report. “There are a lot more frail elderly that are out there surviving with many comorbidities. We have limited supports for them.”
A big barrier is a lack of planning for death, even among those who know they are dying or who care for palliative patients.
“We know that probably 50 to 60 per cent of the time, people are not able to make decisions when they are at the end of their life,” said an ethicist interviewed for the report. “They become incapable. That’s just partly because of the natural disease process. So when decision-makers are not clear what that patient would want for themselves, they really struggle.”
One of the largest hurdles for improving end-of-life care is society’s discomfort in talking about death and the lack of support systems around it which is in stark contrast to birth and the start of life.
“What is really going to make a difference for the experience of Canadians, as they walk through the last stage of life, is not going to be what we do differently within health care — as important as that is,” Dr. Joshua Shadd, director of palliative care at McMaster University told The Spectator. “It’s going to be all the things we choose to do differently as a community, as a culture and as a society.”
It starts with accepting we are going to die, says the Dundas doctor in the report.
“Most people I talk to say they would like to die in their sleep at 85,” he says in the report. “Of course, the reality is that most people will spend weeks or months in a hospital or a nursing home. Sometimes this is unavoidable of course, but most people I talk to seem unaware of this reality.”
What ultimately is needed is a “cultural transformation in how we think about and prepare for death” concludes the report.
“We have to stop thinking that death is about our health system because death is owned by everybody and we have made death into a medicalized event when in fact death isn’t a medical event,” said the Hamilton ethicist. “Yes, you can argue that it’s pathology, anatomy, but what about all the other things that go along with the dying process? I think that we need to stop putting it in the hands of the health system and say that this is your issue to solve.”