When is the right time to move a patient into palliative or hospice care? It’s a question that both family and medical practitioners wrestle with, and one that’s been examined in a recent journal article. Unfortunately, the study found that in a great many cases referrals for terminal cancer patients are being made too late. Some oncologists are only referring terminal patients to hospice care after their treatments are complete—which as the article explains may be just weeks or even days before they pass.
So why am I concerned about this finding? Well, the end result of delaying a referral is that the patients don’t really have the opportunity to benefit from the care and may undergo undue physical and emotional suffering as a result.
The reason for this problem is, I think, two-fold. A large part of this stems from the overall lack of understanding from those outside the palliative realm about the exact purpose guiding the services we provide. Palliative care is about giving patients the highest possible quality of life we can during their final days, weeks, or months. People facing a terminal diagnosis often need that kind of support very early on, even if they’re still getting chemotherapy or another type of treatment.
It also speaks to the compartmentalization of modern health care delivery. Far too often one practitioner is unaware of what another is doing, or is unaware of what their relationship is to those services. One of my main goals as both a practitioner and an instructor is to ensure that people understand that palliative care is done best when it’s done in a complementary fashion, recognizing that at this difficult time in a person’s life we have to treat the mind, body and spirit.
Cole and his service Dog, Bingo. Photo credit to the Bingo Hein Facebook page.
I’m a tried and true animal lover—my dog Chase is an amazing companion and, as I mentioned before, is an incredible stress reliever for me.
And as anyone who’s had a pet in their life can attest, they quickly become members of the family—so much so that when they become ill it can be almost as devastating as when faced with the illness of a loved one. So it makes sense that as we learn more about the care and treatment of animals from a medical perspective, we also advance our understanding of their end-of-life needs. This fascinating article details just exactly how some veterinarians are doing just that.
As the article points out, a lot of animals that receive terminal diagnoses have lots of time remaining in their lives, with lots of wonderful moments to be shared with their families. And just as the goal of human palliative care ensure that a patient has the highest quality of life possible and help them to celebrate the impact their lives have on others, so too can we do the same for the companion animals who’ve done so much for us.
I was especially moved by this piece on a Manitoba boy who created a Lick-it List for his ailing service dog. Sadly Bingo passed away on September 14th, but what a beautiful gift his family and strangers from all around the world gave them all. Talk about honouring that furry, but no less special, life.
Friday, October 12th was the global World Hospice and Palliative Care Day. I don’t imagine you heard much about it in the news, did you? I’m not exactly surprised by this, but it does dishearten me a bit. Now granted, you can find a ‘day’ dedicated to just about anything (there’s even a National Peanut Butter and Jelly day), so in some ways I understand why another ‘day’ didn’t make huge headlines. But the fact is that not nearly enough attention is paid to the importance of hospice and palliative care in the media, and I think any opportunity to do so should be taken.
I think the crux of the issue as to why the day went under so many people’s radar is that as a society, we tend to cringe at the sound of words like ‘hospice’ and ‘palliative’. We view the end of life as something to dread, and we’re fearful of anything associated with it—many find it upsetting. We have been conditioned to think of only the negative aspects surrounding the end of a life.
Hospice and palliative care are about celebrating the life that was and is. And while we must mourn and grieve, we do no honour to our loved ones by failing to acknowledge everything that their life was. The end of life should find one surrounded by love and joy, not misery. And so World Hospice and Palliative Care Day is not about a day of sadness, but a day where we recognize that every life lived deserves an ending filled with beauty, love, and peace.
A few weeks back I talked about meditation and how its beauty lay in the fact that it required no specific spiritual orientation—it’s open to people of all religious or even non-religious backgrounds. As a result, it’s something I think can benefit both patients and practitioners in palliative care.
But I thought it would also be interesting to talk a bit about the flipside a non-denominational approach to care. Because despite the fact that I don’t generally consider myself to be a religious person (spiritual yes, religious no), the reality is that working in the palliative setting I’m going to be encountering people from an incredible variety of backgrounds.
One of the greatest challenges we face in the hospital setting is how best to serve the needs of patients and families who come from cultural and ethnic backgrounds different from our own. Obviously the most obvious challenge is that of communication—people for whom English is not their first language may find it challenging to convey their wishes to us. And we need to take time to ensure that we’re ‘speaking the same language’ both figuratively and literally (different phrases and words may have very different meanings in different languages).
But beyond that, it’s important to try and understand how differing cultural backgrounds can greatly influence how people understand and cope with death and dying. In medicine we refer to it as ‘cultural competency’, and it’s where the art and science of medicine meet. Depending on a person’s background they may approach end-of-life issues in a manner that is dramatically different than our own—and it’s my job to try and not only understand how that shapes their understanding of the situation, but also to communicate in a way that is sensitive to that background.
It’s something that we as practitioners struggle with on a daily basis, and an area of palliative care that can always use more research and discussion. And it’s also one of the reasons I feel so fortunate to have been able to participate in the Upaya program where I was able to deepen my own relationship with death and dying by understanding the approaches of others.
A new article on end-of-life care was recently published in the CMAJ, talking about the need to create a national system of standardization for palliative healthcare delivery. I found it really fascinating on a number of levels, and it’s certainly a discussion that needs to be had.
Because there is no effective regulatory system governing palliative or home care in Canada, essentially anyone can set up a business providing these services—they don’t need to be a medical practitioner or have any medical training whatsoever because accreditation is voluntary (one of the few exceptions is found in Quebec).
Now obviously, this sets up a very dangerous situation and sadly, has resulted in numerous cases of injury, and abuse. What especially bothers me about the situation is that this means that there are people out there treating end-of-life care as though it were just another service-based business, like window washing. As a result, you get unqualified individuals providing sub-standard care to those who are most in need.
I’m glad to see that we’re having this discussion in the medical field—it’s an important one to have. And I hope as we move forward in ensuring the highest level of palliative are for patients, that we also include a broad variety of those involved in end-of-life issues. Let’s remember that expertise in this field isn’t derived solely from a medical degree.