While we celebrate the fact that medical aid in dying (MAID) is now enshrined in law — albeit unsatisfactorily — a new Health Quality Ontario report on palliative care in the province shows that much more needs to be done to better serve those at the end of their lives.
The report, titled "Palliative Care at the End of Life," surveyed patients and caregivers in Ontario and found serious gaps in end-of-life care in the province. These gaps include a glaring lack of choice and control, and evidence that, for many patients, palliative care often comes far too late. Here's a list of three major takeaways from the final report.
- Download the full text of Health Quality Ontario's palliative care report
- Related: Ontario invests in palliative care
1. Assisted dying is only mentioned once.
Despite the recent focus on MAID in the media and in Parliament, this viable and now legal end-of-life option was mentioned a whopping one time in the final report, which was released two weeks after the passing of Bill C-14. The mention can be found in the report’s foreword written by Dr. Joshua Tepper, Health Quality Ontario’s president and CEO. In the foreword, Dr. Tepper acknowledges that MAID would provide a potential choice for suffering Canadians, but that “it does not change the need for access to the best possible palliative care for all terminally patients.” While we at Dying With Dignity Canada agree with Dr. Tepper’s statement, it is shocking that this brief mention is the only time MAID is discussed in the entire report.
Contrary to the beliefs of some, palliative care and assisted dying are not at odds with each other. Rather, both are important options in a spectrum of care that should be available to patients at end of life. Palliative care is absolutely critical, but we are also acutely aware that it alone is not enough and that there is some suffering only death can end. (This is perhaps most evident in Oregon, where stats show that nine in 10 people who used the state’s Dying with Dignity legislation were already enrolled in a hospice program.)
There is also overwhelming evidence that assisted dying actually improves the quality of end-of-life healthcare. For example, in places where assisted dying is legal, doctors are forced to learn more about a broader range of end-of-life options, which they in turn relay to their patients. In fact, it’s been shown that medical professionals are more likely to discuss end-of-life care with patients and their families in countries and states where assisted dying is legal.
Of course, we are still in the early days of MAID so it is perhaps unsurprising that Health Quality Ontario would not include an in-depth discussion on assisted dying in its report. However, with the Supreme Court’s Carter v. Canada decision occurring in February 2015, the reality that MAID would be decriminalized in Canada has been a well-known fact for more than a year. That should have warranted more than a passing mention of assisted dying.
2. Many Ontarians are unable to exercise control and choice at end of life.
The majority of the Ontarians surveyed clearly expressed a desire to die at home, but the report found that nearly two-thirds of patients receiving palliative care end up dying in hospital. To add to this, the report found that nearly 63 per cent of patients who received palliative care services had unplanned emergency room visits in their last month of life. These statistics imply that, even if patients have plans in place for where they go at the end of their lives, their wishes are not necessarily always honoured, especially if their condition suddenly worsens.
The painful reality is that many Canadians do not have real choice or control over how and where they die. Too many patients are forced to spend their last days in the hospital — a scenario that many say is unacceptable to them. Beyond providing care that manages pain and other symptoms, the hallmark of excellent palliative care is that it effectively provides comfort and dignity for patients during the tremendously stressful final weeks of their lives. High quality palliative care should be able to provide patients with services that ultimately reflect their values and wishes so they can have some peace of mind. As it stands, of the 54,000 residents who received palliative care in 2014 to 2015, only 43 per cent received the services at home in their final month of life. It is clear that more needs to be done nationwide to expand in-home palliative care to better serve patients so they are able to die comfortably and according to their wishes.
3. Palliative care is often delivered at the very end — or not at all.
According to the report, more than 95,000 people died in Ontario in 2014 to 2015, and of those individuals, only 57 per cent received some form of palliative care. And nearly 48 per cent of those patients didn’t receive palliative care until their last month of life. There is tremendous room for improvement. The report’s authors suggest that there are opportunities to provide palliative care earlier, with services potentially beginning at the time of diagnosis. If palliative care services were to be introduced earlier, this could possibly help a patient live longer and would certainly affect their enjoyment of life in those later stages.
However, the reality is that there are simply not enough resources to cater to every individual at the end of life. In Ontario, there are approximately 4,000 palliative care beds in hospitals and approximately 300 residential hospice beds. It’s simply not enough.
To address these glaring gaps, the provincial government announced in March that it would commit $75 million over three years to new funding to improve access to end-of-life care. It's certainly a start in improving access to end-of-life care services.
(Header credit: Phil and Pam Gradwell/Flickr)