The case for compassion

holdinghandsI wanted to share with you a blog from the Washington Post, written by the co-founders of an important organization, the New York Zen Center for Contemplative Care. The Center follows in the footsteps of Upaya, where I participated in the “being with dying” program. I was particularly struck by the opening paragraph, describing a heart-breaking situation with a patient who is dying of cancer:

“I am dying. My tears are not because I am sad I am dying. I am just so disheartened that no one wants to talk to me about this and just sit with me. I wish someone would sit with me, like you two, and just be with me at this crucial time.”

It’s such a small request—one that the authors fulfilled without a second thought—but one that can quite literally mean everything to someone who is facing the end of their life.

Ultimately what we’re talking about in these situations is the need for compassion.

We often hear the term referenced in terms of health care, but not everyone realizes how critical compassion really is to any palliative treatment plan. There is a strong scientific basis underscoring the role that compassionate care plays the psychological and, consequently, physical well-being. It takes myriad forms and it’s clearly not quantifiable in scientific terms, but there is little question that small acts of compassion can have a massive impact; holding hands, listening to someone sharing their story, smiling at one another in silence, or even crying together all provide a level of comfort to a dying patient that many of us cannot conceive of.

The response of the patient they referenced leaves no question of that:

“As we were leaving Sarah’s room, she smiled and said, ‘Thank you both for pulling up a chair and sitting down. Thank you for looking at me. I felt you so engaged and that you were curious about me. When we sat in silence, which was kind of awkward at first, it turned out to be just wonderful because you didn’t run out. Maybe this is what I missed my whole life—care, attention and curiosity and silence. Thank you for offering that.’ 

She died quietly the next day, leaving us an invitation to imagine a health-care system that provides not only care and attention but also curiosity, presence and when there is nothing more to say, silence.”

So I’d like to leave you with a simple request of your own. As the holiday season barrels towards us, please take a moment to exercise compassion, however briefly or minutely with a loved one because in the end, those moments are all that matter.

Wishing you all peace for this season and all the year.

The muddied waters of medical terminology

I thought I would take today’s blog to address a question I’m often asked as a palliative care doctor: what are the differences between palliative care and hospice care?

It can be very confusing for people especially as the terms can have different meanings depending on what part of the world you live in. In Canada, the terms are often used interchangeably to describe end-of-life care. Generally speaking, the term ‘palliative’ is used to refer to the type of care being received, while a hospice often refers to the location of that care (often outside of the hospital setting). Because Canada has relatively few residential-style hospices there is a specific criteria for admittance. Generally speaking, people are admitted to hospices when they need specialized care that they can’t receive at home, but whose conditions are not acute or complex enough to merit hospitalization. But the relatively small number of facilities here means that much end-of-life care in Canada is administered in a hospital’s palliative care unit or in the home.

And this is why things can get confusing.

One of the most common misconceptions about palliative care is that anyone who receives it is necessarily dying. But the fact is, that anyone experiencing a life-limiting condition can benefit from palliative treatments, the idea being that medical assistance can be provided to ease the suffering of anyone at any stage of an illness. Many people in palliative care are undergoing life-prolonging treatments with the goal of resuming ‘life as normal’ upon leaving the facility.

There are also tertiary palliative care units (such as those found in Surrey or Edmonton), designed as emergency facilities to help stabilize rapidly declining patients so that they might ultimately be moved home or to another facility.

As I’ve mentioned, it can be very confusing for patients and families to decode all the differences between programs. Ultimately it’s most important for you to talk with your physician or specialist about all the options available. And as always, ask as many questions as you need to—always make sure you get the answers you need to make the best decision for you or your loved one.

For more information about palliative care in Canada, there are excellent resources available at: www.virtualhospice.ca

 

 

 

Gift-giving that makes a difference…

The Wood Buffalo Primary Care facility in Fort MacMurray, Alberta, has put in place an equipment borrowing program for palliative patients and their loved ones. Upon referral, patients and families can access the resource center, where a variety of equipment is available free of charge, and for an indefinite period.

The reason why I found this interesting is that when people think about palliative care, they tend to think mostly about medications. Obviously treating symptoms pharmaceutically is an important component of what we do, but there are many other dimensions involved that are often overlooked or misunderstood by the public—and the role of specialized equipment is one of them.

When someone is being cared for at home, specialized equipment becomes incredibly important. Things like bath aids, railings, grabbers, and soft blankets are essential to ensuring the comfort of someone who is sick. But of course, these supplies are costly and it’s not a cost that should be borne by patients or families during this difficult time. Many programs across the country provide these tools, but it’s something that is perpetually in demand. So as the season approaches where many of us are donating to the myriad worthwhile charities, please consider your local palliative care center. Your gifts will help bring comfort to those who need it most.

Coping with the holidays at the most difficult time

Winter is here, and the holiday season is fast approaching. For most people, it’s a time of year that we look forward to, that brings us warmth and joy at the thought of its arrival. But when a loved one is facing the end of their life the holidays can be especially hard, not only for the one dying, but for all of their friends and family.

It can be incredibly difficult to balance the sadness one feels at the impending loss of loved ones while the world around you is celebrating.

But there’s also something truly beautiful that happens around Christmas, that I’ve been fortunate enough to witness on many occasions. The holidays, more often than not, bring together friends and family members from all over, some of whom might have been apart for years—it’s the most common time of year for reunions. And so Christmas, in fact, can provide someone who is dying with an opportunity they might never have otherwise.

Yes, it can be difficult coming to terms with the fact that this might be someone’s last Christmas, but it’s also such an important time to celebrate the memories that have been created in all those holidays past.

Remember too, that staff at hospices and palliative care centers are always available to help. Never hesitate to reach out to them; they are no strangers to the pressures associated with this time of year. Take the time to read this piece written by the Edmonton Zone Palliative Care Program, and as it says, “be good to yourself.”

Choosing the right time

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.

Celebrating life, in all its furry forms

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.

Ensuring quality palliative care for all

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.