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.

Advertisements

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

 

 

 

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.

 

 

 

Still learning after all these years…

So we’ve just hit the first official days of autumn, and by now students of all ages are firmly ensconced in their studies, whether that be at elementary or high school, university, or even preschool. The rush for school supplies those first weeks of school, seeing all the college students taking over cafes with their binders and textbooks, all of it reminds me of the real joy that is learning.

I think there’s a tendency to think that when we’re done our ‘official’ education programs—when we flip over our tassels and are handed our diplomas and what-have-yous—that the ‘learning’ part of our life is over. My profession is the perfect example of how far from reality that is.

Doctors, if they want to continue to be effective, are necessarily engaged in a process of life-long learning. Just think about it: new scientific breakthroughs, new approaches to our understanding of mind and body, new treatments are always appearing. And wouldn’t your doctor to be on the cutting edge of all that news and information? Of course you would! And the only way that happens is if they retain an active commitment to learning.

But I’m also referring to more informal learning as well. In palliative care we learn that one of the most important parts of our jobs is listening. There is absolutely no way you can be an effective palliative practitioner without listening to your patient; most of the work we do is dependent on being able to assess what they need from us.

And by listening I learn not only about how best to treat my patients, but I learn more about myself. Sure, by listening to patients you’ll learn about their symptoms and how best to manage their pain, but you’ll also learn more about the human experience by listening to their stories and experiences; I can’t imagine an education more valuable than that.

Book now a reference for the Canadian Virtual Hospice

I just thought I would let you know that my book Dying in the Land of Enchantment has now been posted as a Tools for Practice with the Canadian Virtual Hospice.

You can read about it here http://bit.ly/P5QVQa

I have been using the Canadian Virtual Hospice as a reference for my colleagues and patients so it is quite an honour to have my book mentioned on their site.

Thanks to them for acknowledging my book!

What are you waiting for?

I spoke last week about the locum I spent this past month in Sarnia, and briefly mentioned how much I really like the opportunity to ‘slow things down’ by working in a smaller city. The reason why I find it so valuable is that I always walk away from these opportunities with a wealth of new experiences and lessons.

Upon spying my wedding ring, one of the patients in palliative care asked me my age and whether my partner and I had any children. When I answered ‘no’, and that I was 37, she quite bluntly asked me, “Well what are you waiting for? Get to it!”

I know we often hear these kinds of things from friends and family on a regular basis, but it’s easy for us to ignore it, or nod politely and just move the conversation on. But these comments become all the more poignant when you’re working in palliative care. Many out there are under the misapprehension that palliative care is just about easing suffering for the elderly at the end of their lives.

What they forget is how many, what we would consider ‘young’ people are found there as well. I am constantly reminded of how fleeting life can be, and how important it is to appreciate and celebrate that fact. And we do so through our deeds and actions. The most heart-breaking thing I encounter in my field is not when a life is lost—which of course is saddening—but when a patient is anguished over regrets they may have.

I have often said that palliative care is not so much about dying, as it is about living—about celebrating the life we’ve lived and those we have touched. Knowing that a life has been lived without regrets and to its fullest enables both the patient, and their loved ones, to approach the end with a certain amount of peace—peace that can be so critical to the grief process.

It may sound clichéd, but we all have a million reasons to put off doing something we want to do. Many of them may well be legitimate, and it serves no one to be bullied into making decisions we’re not ready to make. But in the end I think it boils down to this—if you or a loved one were reaching the end of your/their life, would you have any regrets?  I think the answer to that question serves as an invaluable life guide.

A working vacation?

One of the things I really love about my job is the opportunity to practice in new settings. I think it’s really important both personally and professionally to understand how different health care systems work, and to also understand how one community’s needs differ from other. I also really welcome the opportunity to meet new people and work with new staff in an entirely different setting. Change does the mind and body good.

Most recently, I filled in for a pair of married doctors in Sarnia. They often ask me to come out there when they go on vacation. It’s not exactly a hardship for me to do so, either, given that I’m given free range of their stunning home while I’m out there. They live on the outskirts of town, right by the beach—a truly idyllic setting to do some of that burn-out-busting I spoke of in my last post.

But beyond the obvious benefits of staying in such a lovely environment, I also relish the opportunity to practice in a small town. Working in a larger hospital, you are so often limited by bureaucratic red tape, and the vast array of responsibilities I have there often make it difficult to get in the kind of one-on-one time with patients that makes it so worth while.

Interacting with patients on a meaningful level is just so incredibly important to being the kind of doctor I want to be. As I’ve always said, so much about palliative care is about living—and if you don’t have the chance to truly connect with patients and their families, then I don’t think you’re going to be able to be the kind of practitioner you need to be in this field.

Getting the chance to slow things down a bit and be reminded of just what an impact my work can have on people is always a gift—even if I’m still technically ‘working’ while doing it!