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

 

 

 

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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.”

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.

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.

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.