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.

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.

 

 

 

Travel and Care Abroad

I just returned from participating in the 7th World Research Congress of the European Association for Palliative Care. It was held in Trondheim, Norway and I had the chance to meet up with several long time friends and colleagues, as well as many international leaders in the field of Palliative Care including  Dr. Edouardo Bruera(MD Anderson) and Dr. Robin Fainsinger (Edmonton).

It was a very motivating experience, and it also helped me to appreciate how fortunate we are here in Canada to have the standards of palliative care that we do (even though our system has its faults). It’s wonderful that these events can be held so that we can learn new approaches and discuss how death is often hidden from contemporary social view and medicalized. Being able to speak with these colleagues reminds us all that those of us who are emotionally invested in our patients are going to find greater meaning in our work and job satisfaction.

( Of course I also speak a great deal about this in my book Dying in the Land of Enchantment– not to plug my book or anything- hint, hint)

In Trondheim, they are currently getting 22 hours of daylight, so getting there made jetlag a little bit trippy for me, but what a beautiful city. This is a photo of the houses on the water- beautiful. They say that Norwegian is the easiest language for a native English speaker to pick up, as it is a Germanic language with a lot of cognates, and a relatively simple verb conjugation structure. That may be, but I cannot say I picked up any of it other than the omnipresent greeting-‘Hei Hei!’  But then again I didn’t really need to learn anything else as everyone spoke near perfect English. So if you aren’t good with languages then Norway is the place to go!

Following the conference, I returned to Oslo for a week of vacation, this time staying in a neighbourhood that Expedia described as ‘trendy bohemian’ that was incredibly cool- before heading to Gothenburg, Sweden

This photo of me is at a café on Linnegatan, one of the city’s main arteries.

It was nice to have mild temperatures to sit out in. I think it was only up to 17 Celsius during the day which is very tolerable. Far better than the scorching weather Ontario was having! It is great to be back home, but I’m looking forward to another journey soon.