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.

The day after…

Canadians watched the election results roll in on Tuesday with rapt attention—myself included. While I’m Canadian, having completed much of my training in the US, I was obviously very much interested. In the run-up to this week’s election in the United States a great deal of time was spent talking about ‘Obamacare’ and the virtues and evils of the system. While certainly the changes made by Obama result in something that is a far cry from the type of system we have here (or in any of the other OECD countries), the fact that upon its implementation more, rather than fewer, patients across the country have access to health care cannot be seen as anything other than a positive.

But there remains much work to be done there in terms of access to palliative care. In 54% of public hospitals less than 40% of sole community provider provide access to their patients. There’s also a significant lack of board-certified palliative physicians. In one state, Mississippi, there is just one doctor available per 1,698 medicare (public system) deaths.

But beyond our neighbours to the south, the state of palliative health globally is extremely varied in both quality and access.

In a country with one of the most advanced healthcare systems in the world, the Kingdom of Jordan, it’s estimated that 10,000 people die every year without the access they need to palliative services.

In New South Wales, Australia, just 10% of those dying from predictable (non-cancer) illnesses receive end-of-life care.

Only four of the 53 African countries have palliative care frameworks included in their health systems—a growing concern as HIV/AIDS continues to ravage the continent.

I’m hardly the first person to talk about how lucky we are, as Canadians, to have a publicly-funded health care system. Yes, the system isn’t perfect, but you don’t throw the baby out with the bathwater; by and large the level of access to services we have in this country is envied by many the world over. I didn’t hear the words “palliative health” uttered even once during the months upon months of American campaigning. It still does not appear to be a global health priority, and it needs to be.

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.

Death and dying in many languages…

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.

 

 

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.