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May 2014
Long term care: not just for the old
May 13, 2014 10:14 AM

Even though many of us will eventually need it, we don't often think about long term care  -- out of sight, out of mind. It's also easy to forget that for some, like Peter Farrah, long term care is a reality at a young age. Whether young or old, the quality of long term care services in Canada is an important issue that needs attention and consideration.  We can learn a lot from the experiences of patients like Peter as reported by Susan Burgess, CBC News.

Read Peter's Story

ALL, About the healthcare system , Finding your way through the system, Stories about patient experiences  
  
April 2014

Being patient
Apr 22, 2014 8:58 AM

Emily Nicholas works with Patients Canada as a speaker and adviser. She is also a research assistant with the Department of Community and Family Medicine at St. Michael’s hospital and helps bring the patient perspective to design with Pivot Health group. Follow Emily on Twitter at @emily_nicholas8.

I like to be prepared for things. I am that person who reads the IKEA instructions before I build the Billy book case, and who wants to know on Tuesday what I will be doing at 3:15 on Saturday.  I’m also the type that brings her Organic Chem text to the emergency room in order to study for that weeks’ quiz while waiting to see the doctor.    

Over the past decade or so I have been tested, injected, measured, scanned and x-rayed so often that you may want to stand back a little from this page.  It was not the education I had in mind for myself.  But, as my mother is fond of saying, “nothing is wasted” and it is true that my patient experience has provided life lessons and insights that continue to serve me well.  Hopefully they can help start you thinking about what you can do to improve your patient experience.

Talk to your doctor about how you feel - and be honest:  This seems obvious but it’s amazing how easy it is to slip into a passive role when you become a patient. Being a patient can be an overwhelming and sometimes frightening experience, leaving even easy going talkative people sitting like a deer in the head-lights hearing only “Blah blah... SURGERY ...and yada yada yada”.

 It is common to feel that the doctor shouldn’t be questioned or even informed about what you think/feel because they’re the expert. Doctor knows best. As an example, after months of phone calls listening to my grandmother complain that she couldn’t sleep, her bladder was leaky and her legs were restless, my mother took her to see the family doc.  When the GP came in and asked how she was, she answered “Oh just fine thank you”.  Granny thought the doctor didn’t need to hear from her what the problem was because – “she should know”.  The reality is, as much training as your doctor has, they cannot read your mind and the more straightforward, honest description they have about how your body feels, what your lifestyle is like, and what your goals are, the better equipped they will be to help you.

Prepare to ask questions:  Doctors are very busy. I didn’t realize how busy until I started working with the family health team at St.Michael’s Hospital where I see doctors working through lunch, going home late and taking naps in the washroom (okay I made that up but I wouldn’t be surprised).  It’s beneficial to you and your physician if you come to your appointment prepared.  Write down important things you want to tell them and questions you want answered before-hand. Bring a pen to your appointment as well so you can take notes or ask someone you trust to come with you to your appointment to jot things down for you.

 It can also be helpful to ask your doctor for any useful (and legit) resources that you could refer to between appointments.  This last point can also help avoid the potential malady known as the Googling panic attack which comes with searching randomly for information about your illness.

Share your experience: Don’t roll your eyes until you’ve tried it.  Much research indicates that there is a great deal of benefit in talking about or writing about your patient experience.  There are different ways to do this. For instance, you might begin by writing in a personal journal.  Don’t worry about your grammar or even about making sense. Just start with some notes about your day, how you feel, what you’re going through.  You can share with your close friends and family, or you might find it is useful to start visiting a therapist or psychiatrist who can lend a more neutral, objective ear (granted finding one or paying for one can be difficult).  Writing or discussing concerns can help to organize your thoughts.  It’s really common when you are worried about an illness to start to think catastrophically, making up far-fetched reasons to explain why things are happening.  It’s impossible to imagine what it’s like to be a patient until you are a patient.  Hearing someone else say they “totally get” how you’re feeling can alleviate feelings of loneliness and isolation.  It’s crappy on a whole different level when it seems you’re the only one suffering.  When other people have to deal with the same storm cloud who of us doesn’t feel at least some sense of solidarity? See #IAmCanadian

Start with just today, or just this hour, or minute . . . When you have a serious illness or injury thinking about how to handle the road ahead can be overwhelming, sometimes to the point of veritable paralysis.  It's easy to get stuck thinking about what brought you to this point – why me? When this sort of thinking appears start with the mantra “Just today”.  When things are especially hard, “Just today” becomes “Just this hour/minute/second”.  It’s good to have a plan prepared before feelings get too overwhelming, so that you can bring yourself back to the present. Things as simple as breathing slowly in and out while counting your breath.  I like solving cryptic crossword puzzles, doing some stretching (even if it’s just reaching your arms above your head) and singing loudly to Stevie Wonder’s version of “We Can Work it Out”.

Don’t save a dime and spend a quarter.  We all know it’s best to be fiscally prudent. We don’t often think of it in terms of our own body and energy.  The physical and psychological stress of being a patient can be depleting.  Add the activities of daily life to that - visits from friends, appointments etc. and you are left scrapping the bottom of the tank.  We often have a tendency on good days to go at full capacity, to do as much as possible, since who knows when the next good day will come.  Then we wonder why we don’t feel so well later.   Take the opportunity to put, as it were, some energy quarters into the bank.  Set limits – maybe one appointment or friend or outing a day – to prevent yourself from going into overdraft.  It’s especially important to reserve some energy since it’s really hard to make healthy, prudent decisions when your body and mind are tired.

R-E-S-P-E-C-T yourself.

All of the things I’ve suggested will work better if you respect yourself and believe you deserve to feel well. It will likely be difficult, if not impossible, to be your usual productive self while you are ill. This doesn’t feel good as we all define ourselves to some extent by what we do….our jobs, our school work, our social lives.   Many of these things will become too much when you are a patient, and sadly it can be easy to start to feel down on yourself.  It’s even difficult to continue with those activities that you enjoy for leisure.    Trying to focus on those improving things you always thought you would get to if there was enough time, like reading neglected classic novels or picking up a new skill such as whittling or throat singing, is likely out of the question.  The reality is, when your body is stressed it’s hard to concentrate.  You need to learn to respect your limitations, to respect that you are undergoing a difficult time and that you really don’t have to continually produce to be a worthwhile person.  You deserve to rest and take care of your body. Believe me, it is trying to do the best job it can to deal with the difficulty. You don’t need to make its work harder by placing extra demands on it.

There are ways to help yourself make respectful decisions.  One of my favorites is the ‘Best Friend Technique’.  It’s pretty much what it sounds like – think of what you would tell a best friend to do if they were in your situation and then follow that advice.   Even if you begin by making prudent, healthy decisions half-heartedly and rather mechanically, after a while you will notice that you will find it coming more naturally.

You will be supporting yourself, and that really counts.

Thanks for letting me share.  I feel better already

ALL, How to tell patient stories, Patient engagement, Stories about patient experiences  
  

The hospital-dependant patient
Apr 14, 2014 11:04 PM

four old ladiesMedical technology is keeping frail patients alive much longer.  How much is too much technology?

The Canadian Medical Association (CMA) is hosting town halls across Canada and an on-line discussion on this important topic of end-of-life care. The CMA is holding town hall meetings and online forums so that we all can participate in end-of-life care discussion. See when these are happening in your community or check out the online forums.

50% of the healthcare budget is spent on 5% of the patient population.  How do we balance quality of life, medical technology and cost? 

Read this article from the New York Times discussing a frail patient’s journey.  

ALL, About the healthcare system  
  
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