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

 

 

 

Advertisements

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.

 

 

Still learning after all these years…

So we’ve just hit the first official days of autumn, and by now students of all ages are firmly ensconced in their studies, whether that be at elementary or high school, university, or even preschool. The rush for school supplies those first weeks of school, seeing all the college students taking over cafes with their binders and textbooks, all of it reminds me of the real joy that is learning.

I think there’s a tendency to think that when we’re done our ‘official’ education programs—when we flip over our tassels and are handed our diplomas and what-have-yous—that the ‘learning’ part of our life is over. My profession is the perfect example of how far from reality that is.

Doctors, if they want to continue to be effective, are necessarily engaged in a process of life-long learning. Just think about it: new scientific breakthroughs, new approaches to our understanding of mind and body, new treatments are always appearing. And wouldn’t your doctor to be on the cutting edge of all that news and information? Of course you would! And the only way that happens is if they retain an active commitment to learning.

But I’m also referring to more informal learning as well. In palliative care we learn that one of the most important parts of our jobs is listening. There is absolutely no way you can be an effective palliative practitioner without listening to your patient; most of the work we do is dependent on being able to assess what they need from us.

And by listening I learn not only about how best to treat my patients, but I learn more about myself. Sure, by listening to patients you’ll learn about their symptoms and how best to manage their pain, but you’ll also learn more about the human experience by listening to their stories and experiences; I can’t imagine an education more valuable than that.

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.

A working vacation?

One of the things I really love about my job is the opportunity to practice in new settings. I think it’s really important both personally and professionally to understand how different health care systems work, and to also understand how one community’s needs differ from other. I also really welcome the opportunity to meet new people and work with new staff in an entirely different setting. Change does the mind and body good.

Most recently, I filled in for a pair of married doctors in Sarnia. They often ask me to come out there when they go on vacation. It’s not exactly a hardship for me to do so, either, given that I’m given free range of their stunning home while I’m out there. They live on the outskirts of town, right by the beach—a truly idyllic setting to do some of that burn-out-busting I spoke of in my last post.

But beyond the obvious benefits of staying in such a lovely environment, I also relish the opportunity to practice in a small town. Working in a larger hospital, you are so often limited by bureaucratic red tape, and the vast array of responsibilities I have there often make it difficult to get in the kind of one-on-one time with patients that makes it so worth while.

Interacting with patients on a meaningful level is just so incredibly important to being the kind of doctor I want to be. As I’ve always said, so much about palliative care is about living—and if you don’t have the chance to truly connect with patients and their families, then I don’t think you’re going to be able to be the kind of practitioner you need to be in this field.

Getting the chance to slow things down a bit and be reminded of just what an impact my work can have on people is always a gift—even if I’m still technically ‘working’ while doing it!