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.

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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.”

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.