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Palliative Care and the Waiting Room Revolution

The third season of the Waiting Room Revolution just dropped. (https://www.waitingroomrevolution.com/podcast) and it is as awesome as ever. I ran across this subversive podcast a few months ago and while I have talked about it I haven't posted about it. Until now.

Every patient facing serious illness should listen to this (and cancer is perhaps one of the most serious illnesses there is!) The first season will take about four hours to listen to. It should be mandatory listening for every patient and caregiver. Dr Sammy and researcher Dr Hsien Seow tried for years to talk to doctors and change the health care system. Based in Quebec (I'm tempted to talk about the hotbed of revolution) they decided they needed instead to give the information to patients so they could change the system from the bottom up. It was revolutionary information for me and has totally transformed my relationship with my oncologist. And for those of you that know me that's saying something.

In the first season they share seven keys to managing serious illness. The keys are:

  • Walk two roads
    Some of you have heard me using the phrase “Hope for the best - Plan for the rest.” It comes from here. How to be realistic and hopeful.
  • Zoom out
    We all need the big picture but most specialists can't do it. Good patient care requires it though.
  • Know your style
    We all have our own ways of doing things. Doctors don't know this and have to work within their limitations. Know what you want.
  • Customize your order
    Standardized care is how the health care system handles the volume of patients. Knowing where to ask for some personalization though is key to making treatment work for you.
  • Anticipate ripple effects
    Serious illness can affect many others beyond the patient. Expecting this and preparing for it goes a long way to making the road easier.
  • Tag you're it
    As I listened to a patient this morning describing learning to use his own lung drain tube I realized he was talking about this. Often we are given jobs that we really hadn't expected. Sometimes they are too much. Knowing that can make it easier to advocate.
  • Invite yourself.
    Learning to speak up may not be for every body. In that case you need to find someone on your team who can do that.

I haven't done any justice to the podcast with my notes. Each one describes how the key works in about fifteen minutes and then through an interview with a patient or caregiver expands and show exactly how it can make a difference in managing a serious illness. That by the way is their definition of #palliativecare not "end of life" or “pain and symptom management” but simply managing serious illness.

Good stuff. Listen. It's available on every podcast platform that I've checked. Then let me know what you think. Are you in on the #waitingroomrevolution ?

Angus

17 Replies
Trillium
2219 Posts

@WestCoastSailor - thank you so much for the link to this podcast. I would like to listen to it.

Laia
54 Posts

I downloaded it . Thank you.

Kuching
436 Posts
Thanks WestCoastSailor‍ Angus. And I love your new hairdo!!
Indigo10
64 Posts

Will check out this podcast And get back to you. Thanks for suggestion

supersu
1365 Posts

@WestCoastSailor

thanks!

always looking for interesting podcasts…

cheers

su

#podcast

Thank you so much for sending this. I will make it a priority to watch it. Nice pink hair.

Okay folks you have had a chance to listen. What do you think? Is it as good as I think it is?

I participated in a zoom call with Hsien Seow and he was just as amazing in person as he is in the podcast. The call was sponsored by the League of Canadian Poets.

I'm following Dr Sammy on Twitter as well. Such valuable contributions…

Love to hear your reflections?

Angus

elle29
1384 Posts

Ok will do the listening , being time off and thanks to bring it to my atte tion .

Not to steal the thunder on a great little video. But thank you CCS for this important little video on palliative care. They haven't quite got to the “managing serious illness” definition yet but darn close. There are some really good arguments for early contact with palliative care, not just end of life.

Angus

Laia
54 Posts
Hi,
Here we do not use the term Pallitative care. Instead they call it Managing Pain and Symptoms doctor. I have met with her every two months. Now we meet every three. We discuss my goals, my family and my wishes. She has met all the family as well. So she knows when to step in or step back.
take care and stay safe.

So I've been debating all day but I'm going to bite the bullet and tell the world. I did a thing with the #waitingroomrevolution podcast and it dropped today. They took two hours of my rambling conversation and turned it into something that I think is pretty useful to both patients and caregivers.

Available on your favorite podcast listening site…

Give it a listen and let me know what you think.

Angus

supersu
1365 Posts

@WestCoastSailor

VERY useful for patients and their care team(s).

thank you for sharing your story.
I know I am truly benefiting from your gift of communication. this ‘stuff’ is so hard for me to talk about---you manage to do it with ease and sound so composed and eloquent. I am learning much from this podcast; thanks for participating.

cheers
su

#waitingroomrevolution #realtalk #cancerishard #imacryer

JenG
221 Posts

@WestCoastSailor That's awesome! Can't wait to listen!! :)

@WestCoastSailor - Thank you for sharing. Keep adjusting those sails.

I agree you will always be Angus- for that I am grateful!

Great Job!

Lacey

LoveMyLife
57 Posts
Great podcast!
Cynthia Mac
4124 Posts
WestCoastSailor‍ - I haven’t had a chance to listen yet, but your post gives me the opportunity to thank you for all you’ve done, helping me through Dad’s lung cancer, and being here for the whole community while you’ve been through so much yourself. Not to mention how your advocacy work is helping thousands of others with lung and other cancers.
RBION
161 Posts

I subscribed to the podcast last fall when you first mentioned it and it quickly became a valuable resource. Not everyone wants to listen to straight talk about death and grief but it can make the whole experience a little easier when you remove the elephant in the room (I can't think of another way to express that…maybe someone can explain it better). Hsien Seow and Winemaker give the listener a lot to reflect on and a lot of tangible information to use. It's definitely worth listening to and I'd recommend others try it. I recently shared it with a friend who is caring for her elderly diabetic mother - neither wants to talk about the future and yet the future is coming whether they like it or not.

Episode 40 was jam packed with more good information and thought provoking Q&A's. Particularly on the term ‘palliative’. 18 months ago my husband received a call from the local hospice wanting to meet with us to discuss palliative care. I learned about the phone call 6 months later when they called again to see if we were interested in meeting with them yet. Why was there a 6 month gap? Because my husband applied the traditional ‘death squad’ perception to the term palliative instead of the current meaning of managing serious illness. When I explained the difference he was less defensive and more open to a hospice visitor. Personally I wish they just came up with a new term instead of trying to reinvent the old one, perhaps you know the history on that one @WestCoastSailor?

The other take away for me was the use of a Roadmap instead of a Timeline. Only the day before my husband and I sat with his oncologist (my first in-person visit!!!) and we tried every possible way to phrase our questions to find out what lies ahead for my husband. We knew there'd be no information given on how long he will live and we have no misplaced hope of a cure but we would appreciate some straight talk on what his future might look like so we can plan and mentally prepare if at all possible. It seemed the doctor was far more uncomfortable than either of us in the discussion and we didn't know how to get what we needed from that part of the chat or how to better ease the doctor's conscience. At this point we're left not knowing quite what to expect in the future other than there'll be increasing care requirements, ongoing pain management and later, perhaps hospice.🤷‍♀️

Rbion

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