We don’t talk enough about death. Most of us would prefer to imagine we’ll live forever. We’d also like to believe that our loved ones will be with us forever.
It’s not just death we’re in denial about, but all things related to it. We really, really don’t like thinking about end-of-life care. Will I be capable of making my own decisions at the end? Will I feel like a burden to my family? These are questions we rarely answer until we have to – if we ever answer them at all.
Many of us will one day be recipients of palliative care. And yet, few people want to talk about the medical services associated with it. For this reason – and for a host of others – the federal government struggles to envision consistent, high-quality care for patients with life-limiting illnesses.
The truth is, many Canadians never get the end-of-life experience they want. This is especially true in remote, northern communities, where patients face many barriers. This post will explore a few of these barriers, and look at how community decision-makers and health care providers might address them.
The Northern Challenge
When it comes to providing palliative and end-of-life services, Canada has a long way to go.
According to the Canadian Institute for Health Information, just 16% to 30% of Canadians who die currently have access to or receive palliative care services. Even when services are delivered, they don’t always meet the wishes of patients and their families.
Though many people would prefer to die at home, this isn’t always possible. Why? Because our health care system was designed to treat people in hospitals. We just don’t have the federal framework to support at-home or in-hospice care on a large scale.
This situation is poised to get worse. Experts say there aren’t nearly enough palliative care specialists being trained to meet anticipated future need. In addition, services are inconsistent from one region to the next. Currently, Quebec is the only province with a law guaranteeing the right to palliative care.
Northern communities face their own unique challenges. Due to sparse populations, health care services tend to be spread out. Facilities that offer specialist care – or even adequate primary care – aren’t always accessible.
It’s true that most people don’t want to die in a hospital. But these facilities often play a role in providing care, even when patients live elsewhere.
A woman receiving palliative care for cancer may be admitted to a hospital for tests if her condition suddenly worsens. If she lives in a remote northern community, she may have to be airlifted there. These trips can take hours, and the costs aren’t always covered. Perhaps most significantly, patients suffer when they have to leave their support systems behind.
When it comes to at-home care, a lack of qualified caregivers is a big issue. Studies have found that remote nursing stations are often understaffed. Worse, staff members don’t always have the right credentials. This doesn’t exactly guarantee quality palliative care.
Then, of course, there are health care challenges specific to First Nations people. Due to our country’s colonial history, a large number of these challenges exist. One example: near the end of life, traditional cultural practices are important to many Indigenous people. Progressive palliative care should accommodate spirituality. Unfortunately, this doesn’t always happen.
The Dilemma: Should Care Be Efficient, or Compassionate?
In his Ted Talk, palliative care physician BJ Miller explores our attitudes towards compassion and life-limiting illness. “Health care was designed with diseases, not people, at its centre,” asserts Miller. He should know. As executive director at Zen Hospice Project, Miller is devoted to a vision of making “empathetic end-of-life care available to all”.
Most of us would agree that this is a noble and worthwhile pursuit. But feeling optimistic about palliative care can be difficult. This is especially true for those who have seen dying or chronically-ill loved ones in the hospital.
Make no mistake: the professionals who work in hospitals are usually driven by compassion. But the environments in which they perform their work aren’t always conducive to positive end-of-life experiences.
And yet, we seem to be resigned to the idea that there’s only one way to deliver care. We remind ourselves that efficiency is the only way to keep our health care systems running. If people aren’t often being treated with their preferences in mind, the treatment they receive must at least be cost efficient, right?
At a time when governments are bracing for the strain our aging population will put on the health care system, this assumption makes sense. But a 2014 report from Ontario’s Auditor General tells a more accurate story.
In Canada’s most populous province, it costs between $700 and $1,100 to care for a patient in a hospital during their last month of life. In contrast, it costs $460 to care for them in hospice, and under $100 to provide care at home.
In the United States, this difference is even more significant. At Zen Hospice Project, it costs around $750 to care for a resident for a day. A New York Time article notes that, in a hospital setting, that number would be around 5 times higher.
Once again, we can trace the way care is currently provided back to health care design. At present, our systems simply aren’t set up to provide widespread home and hospice care – no matter how cost-efficient these options may be.
Health care innovation often takes time to reach remote northern communities. Innovation includes new and developing models of care. The challenges associated with changing the way services are delivered are frequently compounded in these regions. The problem is greater than just funding (though funding is frequently an issue). Government needs to find ways to help build the skills and capacity of caregivers in the North. It’s about creating a truly supportive framework for future care.
But where do we begin?
Northern Palliative Care Solutions
The first step to solving a problem is acknowledging it exists. When it comes to health care issues in remote northern communities, many government decision-makers have gone beyond acknowledgement.
In the last year, the federal government has announced significant funding for First Nations health care initiatives. Ontario has done the same. These initiatives are largely focused on remote communities, and they’re sure to help many people living in the North.
In Ontario, the funding will go in part toward home and community care services, cultural competence training for health care workers, and the expansion of telemedicine. Each of these areas could create a significant improvement in palliative care in northern communities.
Telemedicine may be particularly useful, as it has the potential to bring innovation to those working in the region. The result will be more sharing of knowledge, which will create stronger health care teams. It will mean a more multidisciplinary approach to palliative care, as well as greater access to remote specialists.
A remote medicine program launched in Pelican Narrows, Saskatchewan provides a good example. Though it wasn’t specific to palliative care, the program demonstrated how northern communities could benefit from the wisdom of remote specialists.
To collect information, a robot equipped with a stethoscope, an ultrasound, and various other tools for examining patients was used. A camera captured images and video in real time. As a result, doctors examining patients remotely had all of the information they needed to coach regional nurses through treatment.
In addition to providing better one-on-one care, nurses expanded their skill set and general knowledge. One nurse mentioned that the program helped her learn to recognize red flags related to patient health. There aren’t enough palliative care specialists in the country, and telemedicine has the potential to close that gap.
One can also see how the careful collection of data from palliative care patients – including data collected by technology – could help to build up the knowledge in the field.
But please note: in the example above, technology doesn’t “stand in” for caregiving professionals. Nurses and remote physicians are very much involved in the assessment and treatment process.
By investing in home care and cultural training along with telemedicine, the Ontario government is combining the best of two worlds. Innovation is great. But technology is most beneficial when it’s paired with person-centred care. Nowhere is the need more pressing than in palliative care.
Technical innovation and funding for caregivers are critical to improving palliative care in northern communities. But the biggest shift will be a shift in public attitudes.
We need to start talking about what high-quality care for those with life-limiting illness looks like. We must also do whatever we can to discover the needs of those in sparsely populated areas, including Indigenous communities. This foundational work has to occur before we can truly improve palliative care across the country.
Feature Image: Carmen Zuniga