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.”

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.