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Sunday, July 31, 2016

July 2016 Pallimed Review by Christian Sinclair

July 2016 was a great month! New fellows started, advocates told the hospice story on Capitol Hill and online, the AAHPM held it's Summer Institute. Good things all around.

Here is a recap of all of our posts from July 2016. We know there are some you may have already bookmarked, but forgot to read, or maybe you liked it so much you want to share it again.

Make sure to follow, engage, like and comment with us on Facebook, Twitter, Google+, Pinterest, Tumblr and LinkedIN.  And now catch us on Instagram, where we have grown quickly in the past month. And we always appreciate it when you recommend us to your peers.

Comment Shout-out's for July (in no particular order):
Clay Anderson, Drew Rosielle, Lyle Fettig, Anthony Back, Lizzy Miles, Gerg Gifford, Kyle Edmonds, Kathy Kastner, Karl Steinberg, Lynne Kallenbach, Emilie Clark, Robin Kleronomos, Anthony Herbert, Tom Quinn, Karen Kaplan, Lisa LaMagna, Sidnee Weiss-Domis, Daniel Miller, Robin Youlten, Rebecca Gagne Henderson, Linda Dolan, Andy Probolus, Amy Getter, Alex Smith, Gerald Tevrow, Elizabeth Lindenberger, Vikranta Sharma, Elaine Glass, Matt Rhodes, Vickie Leff, Paul Rousseau, Emily Riegel, Will Grinstead, Jeanne Phillips, Staci Mandrola, Julie Koch, Michael Pottash, Thomas Reid, Pippa Hawley, Kat Collett, Michael Fratkin, Julie Christenson and a few anonymous people.

Highlighted Comment for July 2016
Oh my goodness, there were so many good comments to choose from as you can see from the number of people who commented above. I don't think we can pick just one. So I will just highlight a few great snippets.

Social Media Highlights
Most popular Pallimed Facebook post: "I am sorry I didn't beat cancer" - Reached 41k+ people
Most popular Pallimed Twitter post: Elisabeth Kübler-Ross' date of birth, who would have been 90 this year - 60 Retweets
Instagram Pallimed Account grows from 15 followers to 300

Passionate Volunteers and Writers Wanted
Do you love hospice and palliative medicine? Got something to say or find interesting things to share? Want to reach nearly 40,000 people with your ideas? We do this with a volunteer staff of ten, but we could use more regular volunteers.

If you are interested in writing for or working with us at Pallimed please check out the Pallimed Opportunities page and complete the form at the bottom. If you want to help we have something you could do! Like write this simple monthly review post (this would be really easy to hand off)! Or join our team of social media ambassadors to help run one of our social media accounts (especially with Facebook, Pinterest, LinkedIn, Instagram and Tumblr) - we do on the job training!

Christian Sinclair, MD, FAAHPM is a palliative care doctor at the University of Kansas Medical Center and editor of Pallimed. When not advocating for health care professionals to use social media you can find him playing board games.

Image Credit: Photo credit: Matt Benson via Unsplash CC0 1.0

Sunday, July 31, 2016 by Christian Sinclair ·

Friday, July 29, 2016

Photovoice Roundup Call for Submissions: Self Care


Introducing a new fun visual roundup for Pallimed.org

Your mission, should you choose to accept it... "I like to bowl because it makes me feel young again."

The fine print:

Friday, July 29, 2016 by Lizzy Miles ·


Pallimed Roundup: The Best Advice

Learn from your patients...

Take care of yourself... 

Set boundaries...

-Miriam Volpin, RN
Twitter: @marachne

Know your limits... 

Wednesday, July 27, 2016 by Lizzy Miles ·

Tuesday, July 26, 2016

Against Euphemisms - Part 4 - Assisted Death by Drew Rosielle

(This is the last of four posts by Drew on the language we use in hospice and palliative care. You may want to read his reflection on 10 years of practice or his other posts on euphemisms - "Comfort Care," "Palliative Sedation," and "Compassionate Extubation." - Ed.)

"Assisted Death" - So many problems here.

A) To start with, I don't see a need to replace 'euthanasia' or 'physician-assisted suicide' or 'assisted suicide' with new terms. Because those terms have, at the end of the day, well-defined, internationally agreed-upon definitions. The public may not understand those definitions well, true, but the solution to that is educating the public, not replacing the phrases with ones which are less accurate, less precise, more euphemistic.

B) I've seen people claim 'assisted death' to be a synonym for 'assisted suicide' and only suicide, not euthanasia, as well as it being a blanket term for both of them combined. It sort of makes sense as a blanket term - some phrase to capture the practices of medically-assisting death including both euthanasia and assisted suicide. At the end of the day I can live with this use of it, however it is still confusing, and, prima facie, could also be 'interpreted as including medical actions which are not considered to be euthanasia or assisted suicide (deactivating an LVAD, stopping ventilation in a patient with ALS who is totally ventilator dependent, clamping an ECMO circuit). These all involve removing/discontinuing life-prolonging/organ perfusing treatments which the overall biomedicalethical consensus treats as not suicide or euthanasia, which imply actively introducing treatments with the explicit intent of stopping the heart/breathing aka killing.

C) There is the 'optics' argument for removing the word suicide which I understand, suicide is generally considered to be a very bad thing ranging from tragic/horrible to a mortal sin. The proponents of legalized assisted suicide are arguing that it is moral and ethical, therefore it isn't suicide, or shouldn't be called suicide, because suicide is bad. I understand this argument, however I am not persuaded. Again, in part because 'assisted death' is more confusing, less accurate than 'assisted suicide' as above. Maybe 'assisted self-killing' would be better? 'Assisted self-administered lethal ingestion'? 'A terminally ill patient ending her/his life deliberately by taking a prescribed medication which was prescribed to them for the express purpose of ending the patient's life?' Maybe? Not parsimonious, but an accurate description of what you're talking about, without 'suicide.' I guess to me, however, deliberately taking a lethal dose of a drug to intentionally end your life that day, is suicide. That's what suicide means, acknowledging there are many ways of doing it which don't involve prescription medications. And the proponents of assisted suicide are making the argument that it is morally acceptable to do that in certain circumstances, and it is professionally acceptable for doctors to help patients do that. That's an argument one can make, and the proponents of legalized assisted suicide make that argument, but I don't at all see how that's an argument that the action is not suicide. It's an argument that there is a circumstance in which suicide is ethical, justified, moral, and within the scope of medical practice. Proponents, go ahead and make that argument, just don't argue that it's somehow not suicide. Calling it 'assisted death' however just seems to confuse and obfuscate, not clarify.

Illustration Credit: Christian Sinclair CC-BY-SA-NC

Tuesday, July 26, 2016 by Drew Rosielle MD ·

Monday, July 25, 2016

It is as simple as saying “Hello, my name is…” 
This weekend I was on-call for our inpatient palliative care consult service. As I reviewed the list, I knew only a handful of the patients from seeing them earlier in the week. We had three new consults and had to make a handful of follow-up visits for symptom control and goals of care discussions. Many of the people I met this weekend, I had never met before and I knew we would need to start talking about very challenging issues within in a short order of time. Thankfully I had a simple tool, that made these potentially awkward situations much easier for me, the patients, the families and staff: a friendly introduction to each person in the room.

“Hello, my name is Christian Sinclair. I’m a doctor on the palliative care team.”

With my formal training in hospice and palliative medicine, I’m at ease with many communication approaches that I have learned and observed over the years. Most of them are incorporated into the majority of my clinical interactions, but only one has transformed how I think of talking to patients and families. Like all clinicians I had been taught that introducing yourself to the people you are seeing in clinic, nursing home and the hospital was a good thing to do long ago. But if I am being honest, I probably introduced myself only 70-80% of the time and I certainly never taught anyone that it was important. Clinicians know so much about patients, but they know so little about us, sometimes not even our name, because we don’t take the time to say it. Until Dr. Kate Granger showed me how important it was to say, “Hello, my name is…”

We’ve talked about Dr. Granger and the #HelloMyNameIs effort on Pallimed before, but I wanted to write it again to honor Kate and her efforts, because she is no longer able to carry on this mission. I know that many other people will, and I hope you will be one of them. Kate Granger died in England this past Saturday from sarcoma. The same sarcoma that landed her in the hospital in 2013 and inspired her essay on the lack of human connection in modern medicine. During that hospital stay she noted how inconsistent the introductions from staff were. After that stay, she sent out a tweet with the hashtag #hellomynameis and encouraged other healthcare professionals to always include it in their practice.

I'm going to start a 'Hello. My name is...' campaign. Sent Chris home to design the logo... #hellomynameis
— Kate Granger (@GrangerKate) August 31, 2013

Because of this, Kate Granger is a clinical hero of the first order, who has changed the care of millions of patients, by cementing a simple concept of the friendly introduction into clinical practice. Her efforts in the UK led to the National Health System (NHS) to make #HelloMyNameIs an official campaign, with hundreds of thousands of clinical staff, clinics and hospitals signing on. Kate spoke internationally on the importance of building relationships between clinicians and patients. She was awarded the Most Excellent order of the British Empire for her work in this area. I’m surprised at the lack of widespread uptake here in the United States, because this is such a winning concept that other clinicians and health care organizations around the world have adopted and made big impacts. Everyone in healthcare should know about Kate and #HelloMyNameIs. So this past weekend, knowing Kate was gone, but really still with me, I continued the lesson she taught me 3 years ago. I made better connections with people because of #HelloMyNameIs. Her legacy will live on with all of us to exercise in practice and to educate our peers and learners. Because of Kate Granger, her story and her advocacy for #HelloMyNameIs, I didn’t have to wait until I was a patient to view the imbalance of power and vulnerability. It has been laid out for all of us to acknowledge by Kate, our peer and hero, to make a friendly introduction and never stop seeing the person in the patient.

Thank you, Kate

Tribute to Dr. Kate Granger (The Guardian (UK)) by Rachel Clarke
One of Kate's last essays in the UK Telegraph - "I blogged about my death, but then I didn't die"
Official website for #HelloMyNameIs - Get a name tag!
Dr. Kate Granger's Twitter account
Dr. Kate Granger's Blog

Monday, July 25, 2016 by Christian Sinclair ·

Sunday, July 24, 2016

Hope is a Hot Button


by Kathy Kastner As life draws to an end, hot buttons need only be barely touched to set off flares of righteousness. Hope is one such hot button, and often seems attached to ‘false’ – which crushes hope dead. I rail every time I hear the righteous pronounce:

“You don’t want to give them false hope.’

Why is hope so contentious when benefits have proven huge? From Dr. Jerome Groopman’s The Anatomy of Hope:

"Belief and expectation -- the key elements of hope -- can block pain by releasing the brain's endorphins and enkephalins, mimicking the effects of morphine. In some cases, hope can also have important effects on fundamental physiological processes like respiration, circulation and motor function.”

To put this into more precise perspective: we’re not talking about someone who hopes to be a singer, but can’t hold a tune; a would-be hitter who is embarrassingly uncoordinated, a woefully unqualified businessman who hopes to be president (wait, maybe that’s not hope..)

‘Hope’ for these purposes refers to someone who will never recover or get better.

The arguments I’ve heard against giving hope that is most likely doomed to be ‘false’ are many, and many seem logical – although not necessarily from the patient’s point of view.
For me, these reasons have nothing to do with the patient, and everything to do with anticipated emotional and practical mop-up that may fall in the laps of those who hold out hope – however false it may be..

The BIG hopes and the smaller hopes

But wait: not all hopes have to be BIG hopes: hope for a cure, permanent remission, return to ‘normal’. The beauty of the spectrum of ‘hope’ means it doesn’t have to be a ‘huge’ hope to be of benefit.

At life’s end, hope needs re-framing

Up until life’s end, there are still things to hope for, like the 103-year old woman who hopes to live to vote for the first woman president, or Garry’s hope - having been diagnosed with esophageal cancer a month after his wedding: Preach on Mother’s Day.

Smaller hopes count and can be so much more achievable, like hoping to
Dr. Robert Roose MD MPH, tells the story of Samuel, a middle aged black man, 8 months into a diagnoses of Stage IV gastric cancer.

“He was in constant pain and the one thing that brought him joy – eating – was unbearable."

One day, Roose decided to do something different: asking Samuel if there was anything he wanted.

“I want something to eat. Can I eat something? I want an orange, a Valencia orange.”

And so the doctor did a very un-doctorly thing – sped across the road to the nearest fruit stand and bought a bagful of Valencia oranges. Which Samuel promptly devoured, skin and all

“He knew how it was going to end. The vomiting would start any second. Death would follow soon. He was having it his own way, on his own terms, with both life and death in his grasp, spraying, dribbling, and running all down his face. It was his moment.”

Was that the Big Hope - a peaceful passing? Doesn’t sound like it. But for Samuel, he got what he longed for and hoped for. A Valencia Orange.

A profound experience for Dr Roose who says,

“Samuel, I thank you for letting me be part of it.”

I submit that, instead of asking of those en route to the end, “What are your goals of care?” instead ask:

“What are you hoping for?”

It’s an opportunity to be generous of spirit, and perhaps even the rabid anti ‘false-hope’ crowd can sign up for. We invite you to join us this Wednesday to talk about hope at the weekly hospice and palliative medicine/care chat on Twitter using the hashtag #hpm.

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 7/27/2016 - 9p ET/ 6p PT
Host: Kathy Kastner Follow @KathyKastner on Twitter.

For more on past tweetchats, see our archive here.

Kathy Kastner was motivated by what she learned on #hpm to create BestEndings.com. Now, she is considered an ePatient evangelist for palliative care, did a TEDxTalk, and is regularly invited to speak on the topic.

This post was originally published on Pulse (LinkedIn.com). It has been published here with permission of the author.

Sunday, July 24, 2016 by Pallimed Editor ·


Against Euphemisms - Part 3 - Palliative Sedation 
"Palliative Sedation."  Golly I hate this one.


Wednesday, July 20, 2016 by Drew Rosielle MD ·


Mindfulness Prayer to Begin IDT Meetings


by John Florian

I am a hospice chaplain working in Central Ohio and am asked in that role to provide a prayer at the beginning of our interdisciplinary team meetings. I want the prayer to be truly interfaith and non-denominational, but even more importantly, I want the prayer to meet the team where it is in the moment, and to inspire them in their work. I use a mindfulness bell to set the tone for the prayer and to create a space in the day.

Here is a prayer I created for our team: (mindfulness bell)

Let's take a deep breath . . . and find our spiritual center (pause)

May God bless our ministry today.

We call to mind the patients and families we are privileged to serve, and hold them in our hearts (pause)

Inspire us to be instruments of Your Compassion, offering genuine presence, comfort and hope to those we meet.

Since we often feel overwhelmed, help us take care of each other, and remember to take care of ourselves as well.

Help us to be patient with one another, and with ourselves, and when recognizing a Moment of Grace, to smile in appreciation.

May God bless our ministry today, and always.


Editor's note: John has graciously given permission for other hospice and palliative care teams to use this opening prayer for noncommercial purposes. If you do use it, please let us know what you think. If you have other suggestions for how you open your meetings that you would like to share with the Pallimed.org community, please see our submission page.

Photo Copyright: Deniz Altindas https://unsplash.com/@omeganova

Sunday, July 17, 2016 by Lizzy Miles ·

Wednesday, July 13, 2016

Against Euphemisms - Part 2 - Compassionate Extubation 
(This is the second of four posts by Drew on the language we use in hospice and palliative care. You may want to read his reflection on 10 years of practice or his first post on euphemisms - "Comfort Care." - Ed.)

Euphemistic phrase #2 that I'd like to never hear again: "Compassionate extubation."

By which people typically mean 'extubating someone who is on invasive mechanical ventilation who is not expected to survive long, to a plan of care that focuses on symptom alleviation.'

What bugs me about it is the use of the term 'compassionate' to try to encompass the idea of a dying patient, care goals focused on symptom alleviation and providing a comfortable death, etc. One could totally lack any compassion for a patient and agree to extubate them expecting them to die, based on a purely legalistic interpretation of contemporary medical ethics (patients have a right to say No, etc), and proceed to 'compassionately extubate' the patient, right? Compassion needn't enter into it.

I also dislike, and I have to admit this is a really visceral thing for me, the claiming of the mantle of 'compassion' for things we do in palliative care. It can imply that other things in medicine aren't compassionate, or are less so than us pallatieurs. Is the ED doctor who diagnoses your mother with severe hypoxemic respiratory failure from community acquired pneumonia and intubates her in the emergency department in order to save her life lacking in compassion? Is the critical care team who cares for a patient through ARDS into recovery, and extubates the patient to a facemask and ongoing aggressive management to, you know, save their life, lacking in compassion when they do that? Why do we need to add valorizing, morally-laden language to this act when we do it? Why not just 'discontinuing mechanical ventilation with a plan to keep a patient comfortable as they die?' or some such variation. I know, I know, it's too much of a mouthful, but if you don't object to 'comfort measures only' as discussed in Part 1, you could say "Discontinuing mechanical ventilation to a CMO plan of care' etc.

There are also variations 'palliative extubation,' or, god-save-us-all 'palliative liberation from the ventilator' etc.

(See the discussion on 'palliative sedation' in part 3 for why I don't like using 'palliative' in these contexts. In short, we do a lot of things in palliative care, and I don't see how it clarifies anything or helps anyone to associate our name which is already used in a bajillion different ways to this practice.)

What I dislike about 'liberation' is that is it unnecessarily moralistic. Why even introduce such a judgement? This is a technology which saves countless lives every year, not something to be 'liberated' from. If someone is receiving mechanical ventilation and it becomes apparent that it is not going to help them survive, or be a bridge to an acceptable recovery, or otherwise is against the patient's wishes/values, then we stop it, and provide appropriate ongoing medical care. Let's just say that, not that we are heroically 'liberating' patients. That's how it reads to me, as unnecessarily heroic.

I know some, patiens/families view it as a liberation and that's fine, that's a good thing, but that doesn't mean we should routinely call this event a liberation. Some patients quite happily call it 'pulling the plug' which doesn't mean I'm about to call it taht. Imagine the family who is agreeing to the vent being stopped but remain ambivalent, conflicted, worried are they doing the right thing, the moral thing, the loving thing and a doctor blithely walk in and start talking about doing this thing which will lead to their loved one dying quickly and you don't want them to die but in your heart know it's time and you've got to let this happen but it's so tough and the doctor starts calling it a 'liberation.' I'd be like W-T-F?? if I was that family member.

There's also the phrase 'terminal extubation.' I don't use it, but it bugs me less than 'compassionate' or 'palliative' extubation, because I think it's less euphemistic. However it's still not clear, not precise, could be interpreted many ways, so not so helpful. 'Discontinuing mechanical ventilation' is just fine.


Wednesday, July 13, 2016 by Drew Rosielle MD ·

Tuesday, July 12, 2016

Passing the Hospice and Palliative Medicine Boards

 

Some other good tips:

Illustration Credit: Christian Sinclair, original image from Caddyshack

Tuesday, July 12, 2016 by Christian Sinclair ·

Monday, July 11, 2016

JAMA Got It Wrong: Giving Prognostic Information to Families of Critically Ill Patients Is Not the Same as Palliative Care by Elizabeth Lindenberger

I know I am not alone in my disappointment this week with the authors’ conclusions in “Effect of Palliative Care-Led Meetings for Families of Patients with Critical Illness: A Randomized Clinical Trial.” The study intervention involved the provision of an informational brochure and two focused meetings specifically designed to provide families with information about prognosis. The study found no difference in most outcomes between usual care and the intervention, and PTSD symptoms were in fact increased in the intervention group. The authors concluded that "these findings do not support routine or mandatory palliative care–led discussion of goals of care for all families of patients with chronic critical illness.” What? How does this very specific, targeted intervention that deviates dramatically from usual palliative care practice become equated with palliative care?

As a palliative care physician at Mount Sinai, I participated in this study. I am not surprised by the negative results. These family meetings were highly scripted, designed to provide information about prognosis, and rarely involved the primary team. The study had great potential to make a contribution to the practice of critical care medicine, specifically to answer the question of whether offering prognostic information earlier in the critical illness trajectory could benefit patients and families. However, the study was designed such that the informers were not the patients' treating physicians. In fact, ICU team physicians participated in only 3-8% of meetings. Palliative care providers were chosen to given the information because of their expertise in communication. And yet nothing about the intervention resembled a standard palliative care intervention, which would have involved the entire IDT, multiple meetings for relationship building, information provided only when welcomed by the family, and the 100% presence of the ICU treating team at the meetings.

I remember back to one particularly distressing family meeting spent managing a family member’s anger at what to them was shocking, new information about prognosis provided in the study brochure. This family was not ready to receive information about prognosis, especially without their primary team present. This is not standard palliative care. Again, I believe this study was bold and important in testing a specific information-giving intervention for a vulnerable patient population at high risk for unwanted overtreatment and suffering.  It is the study’s conclusions that are flawed, and I worry about their potential for depriving critically ill patients and their families from the benefits of true gold standard palliative care.

Elizabeth Lindenberger, MD, is a palliative care physician and program director for the Hospice and Palliative Medicine Fellowship at the Icahn School of Medicine at Mount Sinai in New York. This is her first Pallimed post.

(For more opinion on this JAMA article please see Alex Smith's post at Geripal - Ed.)

Photo Credit: @ismaelnieto

Monday, July 11, 2016 by Pallimed Editor ·


Building Online Community in Hospice and Palliative Care by Christian T Sinclair

In this digital age, it is common to hear how devices isolate us from real authentic relationships. There are books written about how no one gets together once a week at the bowling alley or the coffee house, to just talk with friends and build that valuable relationship glue. I chuckle when I hear these concerns, because what I have experienced has been quite the opposite with the weekly #hpm chat on Twitter.*

(If you just saw the hashtag or the word Twitter and you immediately thought “I don’t do Twitter,” stick with me until the end!)

Next Thursday marks the 6th anniversary of #hpm chat, our weekly online chat dedicated to hospice and palliative medicine/care. In these six years, multiple friendships and connections have been made because of #hpm chat. Through these weekly conversations, I know social workers, physicians, pharmacists, chaplains, advocates and physicians I would never have likely met otherwise. They help inform my worldview of the field through sharing their experiences. One chatter recently mentioned that #hpm chat was like her interdisciplinary self-care. I must agree,. Each time I feel a little drained by work and think about skipping out on the Wednesday night chat, I sign on and find that I am re-energized by the end of the hour.

So I would like to invite you to come celebrate with us on our 6th anniversary.

For those of you who have never participated, if you have a Twitter account, please come join us. Just once and you will find a welcoming community that you’ll want to come back to. If you do not have a Twitter account, you can always follow as a voyeur by following the #hpm hashtag before you decide to get a Twitter account (I realize it is not for everyone!)

If you only have used Twitter to follow the The Hospice and Palliative Care Annual Assembly, you will find the same energy and great info all year long each Wednesday night. If it invades family time, I get that, but think of it like going out after work with colleagues. You are entitled to do that a few times a year! It’s good for your professional networking!

And if you are one of the thousands who have participated over the past six years, thank you so much for being part of a unique endeavor. Collectively we have made a tent pole for hospice and palliative care advocates to gather and support each other, all while being open to the public for education and feedback.

Since 2010 we have held 297 chats covering lots of topics, with a few repeats in there because the audience is always changing and people have new things to bring to the table. Since 2014 we have had 124 chats with nearly 88 million potential impressions from nearly 40,000 tweets from over 4,000 (non-unique) participants. We are excited to see what the future brings.

A big shout-out to the #hpm chat co-moderators: Meredith MacMartin (@GraniteDoc), Niamh van Meines (@EOLNavigator) and Ashley Deringer (@acderinger). They have done a great job making sure this chat functions week in and week out. If you are interested in helping with #hpm chat we have some projects we would like to do but need more volunteer hands on deck. Just contact any of us on Twitter or @hpmchat.

Christian T Sinclair, MD, FAAHPM is the co-founder and lead moderator of #hpm chat, editor of Pallimed, president of the AAHPM, and a palliative care doctor at the University of Kansas Medical Center. When: Wed 07/13/2016 - 9p ET/ 6p PT
Host: Dr. Christian Sinclair, and Dr. Meredith MacMartin

If you seem to always forget about the chat until it is over, you can always set a calendar reminder!


*Occasionally people ask why #hpm and not #hpmc? #hpm was not a widely used hashtag, but #hpc was already getting lots of traffic for people to talk about Hewlett-Packard Computers (which has now morphed to High-Powered Computers). The first organizing hashtag for our field was #AAHPM for the 2009 Annual Assembly. As the Twitter tribe for our field was small back then, the decision was made by me to stick with #hpm since it was close to #AAHPM, and not staked out by any other group. We now recognize it as hospice and palliative medicine/care and have all professions well-represented at our chats.

Friday, July 8, 2016 by Christian Sinclair ·

Thursday, July 7, 2016

Against Euphemisms - Part 1 - Comfort Care 
Well, I've been practicing palliative medicine for 10 years - 11 including my fellowship. So I feel like maybe I can take off my young turk hat, and put on my grumpy old man socks (I'm looking at you Bob Arnold and David Weissman) and start complaining.

What I wanted to complain about is the use of euphemistic, moralistic, and/or confusing terminology in our field, to describe our clinical work, and suggest we'd all be better off if we just said what we mean, as cleanly as possible. All of medicine has this problem, but palliative care you are my tribe, so this is what I'm going to complain about today and over the next four weeks.

During my training, I quickly got taught to avoid damaging, inaccurate, or inflammatory/scary phrases like "withdrawing care," "terminal sedation," "there's nothing more we can do," "pull the plug." So I stopped using them (although I'll note I have patients or families say the latter two to me all the time as they describe what they are deciding or what's happening). However we've got plenty of our own euphemisms in palliative care, although none as horrid as 'withdrawing care'.

This will be a 4 part-er and discuss 'comfort care,' 'compassionate extubation,' 'palliative sedation,' and 'assisted death.' I appreciate perhaps all this is a little cranky, and look forward to readers' responses, push-back, alternatives, etc. Sharpen your quill. In particular, if someone can counter-propose a non-euphemistic-but-as-nearly-parsimonious alternative, let us know. I'm not going to talk about 'serious illness,' because I don't know quite what I'd say, but I appreciate it has its problems. I don't think it's as egregiously messed as 'palliative sedation' or the others, however.

I need to acknowledge that all language is 'loaded', full of multiple meaning/connotations, historical context, etc - I get that - I'm arguing however as much as we have a choice to be clearer/more accurate/more transparent we should do so. I also appreciate that some of these terms are used as a sort of argot, an in-group short-hand ('we all know what we are talking about'), and that's fine I guess, but I still think we (in medicine, in healthcare, in life) should collectively try to err on saying-what-we-mean-clearly, as much as we can. Certainly, if we're using an argot, it should never be used in front of patients. Let the politicians have their double-talk, we're better than that.

So, grumpy socks on.

"Comfort care." "Comfort measures." Ok, I'm starting with an example that's just going to prove to you that I'm just being grumpy and vapid, because this is the one term of the 4 that I still use (in discussion with other healthcare professionals), because it is widely recognized amongst us healthcare professionals, and replacing it with the huge mouthful of 'a plan of care in a patient who is dying in which the goals of care are to prevent and alleviate suffering but not to prolong life/the dying process' is irksome, and runs the risk of the people who you're talking with deciding you're a pompous jackass.

So, yes, I say it, but only internally, I treat it as jargon, dirty, dirty jargon never to be spoken in the presence of patients/families.

My problems with it are two-fold.

One, it amplifies the already irksome and unnecessary dichotomy we have set up in medicine between 'cure' and 'comfort.' I'm no fool, I know sometimes there really is such a dichotomy, you can't have one without the other, but if remember from palliative care 101 eleven years ago, what we are trying to do in palliative care is to reduce the gap between the two, to help our patients feel better as they live longer. This is what the whole 'upstream' 'concurrent' palliative care idea is about, right? So I don't like reinforcing that chasm. Someone on one of my teams years ago starting saying 'comfort measures only' (for all I know this language has been widespread for years, I don't remember it however prior to the late 2000s), to underline the idea that *all* our patients should be receiving comfort measures; and for most of our patients who are imminently dying, the plan adjusts such that 'comfort measures' are all they are receiving, medically. "CMO" remains a commonly used, in-house argot

Two, it's confusing for patients and should never be said in front of them.  I've seen it lead to stupid miscommunication many times. Like someone asking a patient 'Do you want comfort care?' 'Do you want us to focus on keeping you comfortable?' and the patient saying 'Yes of course' not realizing that the clinician was actually saying 'Should we stop efforts to prolong your life and *only* provide ongoing interventions to alleviate symptoms/provide comfort?' It's kind of like the infamous consult we've all had where it's like 'the patient wants hospice care please help arrange that' and you get there and find out the patient was asked something along the lines of 'Do you want to go home?' 'Do you want support at home to keep comfortable?' and of course the patient wants this, who the hell doesn't, but it was never actually explained to them that hospice implies discontinuing life-prolonging treatments, and not coming back to the hospital for 'aggressive measures.'  (I know, I know, not always, there is some nuance here, but this is basically what enrolling in hospice implies.)  Friends who work in hospice - these patients are enrolled all the time, right, and you go visit them and realize they have no clue what they just signed up for? They thought they were signing up for help being comfortable, and people coming to visit them at home, but not discontinuing active attempts to keep them alive.


Thursday, July 7, 2016 by Drew Rosielle MD ·


When Dying isn't Enough for Family to Forgive

This article is the fifth in a series of articles where I take each assumption from the original article and explore the concept in greater depth to include implications and possible interventions.  In my last article, I wrote about the assumption People don’t want to be alone when they die.

Here is our next assumption: Family matters will get resolved. A bestselling book by Dr. Ira Byock, The Four Things That Matter Most, suggests that at the end of the day, or at the end of life, it all boils down to these simple thoughts:
“Please forgive me,”
“I forgive you,”
“Thank you,”
and “I love you.”

The book asserts that we can have powerful emotional healing within our relationships if we remember what matters. It is one of my favorite books on end of life.

As a hospice social worker, I have been witness to some powerful reconciliations at end of life: a daughter who forgave her mom for alcoholism, a son who forgave his dad for the divorce, siblings hugging it out.

We sometimes even see the patient’s physical symptoms resolve. “Terminal restlessness” may go away when that long estranged loved one finally visits. We see the unconscious patient’s brow relax. The effect of resolution in the patient is physically apparent and they die with a peaceful expression on their face.

Sadly, though, we have to acknowledge and remember that sometimes the reconciliation doesn’t happen. The daughter will never go to the nursing home to visit her dying mother. The brothers will not put aside their differences despite a shared love for their dying father. The patient will not forgive the grandson who stole from her.

Unresolved conflict can be difficult for some hospice and palliative staff to accept. We know how much better they will feel if they can just let go of past hurts. We know that if they hold grudges, they might hold it for the rest of their lives. Is there something we can do or say to help them understand?

Maybe. Maybe not. We have to remember it is not our family and we don’t have the complete picture. We should not go overboard trying to set up a reunion or reconciliation because of our own idealized view of relationships. It is easy for us to get caught up in the situation if we are repeatedly reminded by the patient or primary caregiver of the desire for contact with another family member. Remember, it takes two to reconcile.

A patient or other family member may even ask staff to make a phone call to the estranged family member on their behalf. They might hope that a staff member’s notification will be taken more seriously. They might hope we have a way with persuasion where they did not.

This intervening is not advisable. In social work, we call this triangulation. Triangulation means we are getting in the middle of things and taking sides. We have to let go of the romanticized notion of our personal role in helping to resolve a 30-year old dispute at the deathbed.

Suggested Intervention: Assist family members with talking through how to reconnect to a loved one, however, avoid interjecting yourself in the middle of the situation. You can help them with phrases on how to reconnect.

We may not be the only ones who are hoping to see a reconciliation. There are times where a family member who is close to the patient is hoping the patient will resolve issues with another family member. Sometimes it is not a matter of an interpersonal dispute, but rather the primary caregiver is disappointed that others are not visiting patient. This is especially painful for the hopeful one because the patient is dying. This is that other family member's last chance to make things right. The high expectations one family member has of another can cause frustration for all parties involved.

Suggested Intervention: Provide emotional support to family members who are distressed by non-involvement of other family members. If appropriate, encourage them to express their feelings directly to these other family members.

There may be times where we are in contact with the estranged family member. For example, when the Power of Attorney (POA) of a patient in a facility does not visit the patient. They have their reasons for not wanting to be there. If we do our part to inform the POA that the patient is dying, and they still choose not to visit, we have to accept their decision.

Suggested Intervention: Allow family to stay un-involved if they choose. Provide supportive listening if they feel they want to explain why they are estranged. Although we may not personally have experienced extreme family dynamics such as abuse that led to estrangement, we have to acknowledge there are situations that warrant a relative’s choices. It is sometimes impossible to fully understand the contempt a family member has for the patient when what we see is a sweet, kind, and vulnerable person. We do not have all the pieces to the puzzle. We may not have any idea what was experienced in the relationship. Even if we disagree with the reason for the estrangement, we have to be mindful to be accepting of the feelings a family member has.

Suggested Intervention: Self-reflect on our own feelings about non-reconciliation.

The most memorable advice I was given as a new social worker was to remember the acronym: NATO - Not Attached To Outcome. The best support we can provide to patients and families is to provide loving kindness without attachment to how things “should” be in their lives and relationships.

Note: To continue reading the assumption articles, the next one in the series is: Do Hospice Patients Reveal the Secrets to the Universe

Friday, July 1, 2016 by Lizzy Miles ·
