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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.

Advocacy

• Building online community in Hospice and Palliative Care - #HPM chat 6th Anniversary by Christian Sinclair

Communication

• When dying isn't enough for family to forgive by Lizzy Miles
• Against Euphemisms - Comfort Care by Drew Rosielle
• Against Euphemisms - Compassionate Extubation by Drew Rosielle
• Against Euphemisms - Palliative Sedation by Drew Rosielle
• Against Euphemisms - Assisted Death by Drew Rosielle

Humanities

• Mindfulness prayer to begin IDT meetings by John Florian

Interview/News

• It is as simple as saying "Hello, my name is..." by Christian Sinclair
• Pallimed Roundup: The best advice by multiple authors

Narrative/Opinion

• Looking back on 10 years of palliative medicine by Drew Rosielle
• Hope is a hot button by Kathy Kastner

Research/Education

• JAMA got it wrong: Giving prognostic information to families of critically ill patients is not he same as palliative care by Elizabeth Lindenbarger
• Passing the Hospice and Palliative Medicine Boards by Christian Sinclair

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.

• Awesome series concept. Then again, I'm the target audience: simultaneously surly and picky about words. - Kyle Edmonds
• I just today put on my grumpy socks on and asked to remove "withdrawal of care" as a reason for consult from the order set. - Lynne Kallenbach
• Yeah, it's kind of a shame when words like compassion, or dignity, get co-opted - Karl Steinberg
• The words/terms will continue to challenge us, yet inviting clearheaded conversations about the strengths/weaknesses of various terms, etc will hopefully help. - Lyle Fettig
• Reader beware while interpreting any headlined new research article. - Amy Getter
• Paternalism is an important tool to know how to use responsibly so that we don't slip over into authoritarianism and if we do to have the humility to come back. - Andy Probolus

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

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Introducing a new fun visual roundup for Pallimed.org

1. Send us ONE square photograph from your life that represents your self-care activity of choice.
2. Tell us in ONE sentence about this activity.

• Photos must be original, by author.

• Include one sentence description. 

• Include your name, hospice/palliative care role and Twitter handle (if you have one).

• Submission of photo indicates a release for publication on Pallimed.org

• We may not be able to publish all entries.

• Keep it clean.

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The editors of Pallimed are proud to announce a new editorial feature: Pallimed Roundup. In these articles we will publish a collection of quotes culled from palliative care professionals around the world.

Looking back on the early days in your hospice and palliative career, what is the best advice you received?

“Best advice - find a mentor and be a mentor!”
– Shirley Otis-Green, MSW, MA, ACSW, LCSW, OSW-C
Twitter: @sotisgreen

Learn from your patients...

“Thinking back to all of the wonderful mentors I had over the years, I always go back to my very best mentors---patients and their caregivers!

Early in my hospice and palliative nursing career, I cared for a young woman, 'Mary,' in the final days of her advanced cancer. During the time she spent as an inpatient on our palliative care service, Mary's husband, and often other family, remained at her bedside continuously.   Each morning as I 'rounded' to assess Mary's status, comfort, and answer questions regarding goals of care, I observed, and felt, the growing sadness and realization of this family as they experienced imminent loss and struggled to say goodbye.

Following Mary's death, as I was saying my own goodbye to her husband and family, he said, 'We want to thank you for giving us such hope.'

I was taken aback as I mentally reviewed our palliative plan of care as it focused on the management of Mary's symptoms associated with her illness and approaching death--not 'hope.'

He then went on to say, 'You gave us hope that Mary could feel better, even as her cancer progressed. You gave us hope that she would be kept comfortable, that she would not struggle. That became our hope too. Thank you.'

Lesson learned: Palliative care provides hope. The best advice I received, thankfully, very early in my career."

- Jane Sidwell, MSW, RN-FPCN
Twitter: @janecarols

Take care of yourself...

“I was in a dark place during my clinical training when a trusted mentor told me: 'You cannot give what you do not have.' This helped me to see the importance of establishing good self-care rituals like journaling, retreats, and letting go at the end of every work day. I can't imagine how I would have sustained any kind of quality spiritual care without this compassionate advice at a key time in my formation. It helped me to see that self-care is what enables me to provide quality care.”

- Rev. Will Grinstead, MDiv, ThM
Twitter: @GrinsteadWill

Set boundaries...

“This may sound strange, but it was actually before I became a HPM professional, but was working as a volunteer at a facility for people dying with AIDS who had no other place - this was in the mid-90's so people were dying fairly regularly. A wise hospice nurse said to me 'just because someone is dying, doesn't mean they get to be [a jerk].' Hopefully you understand that this was not an invitation to turn one's back on care and compassion, but I do think that it is a way of framing things that really help keep burnout at bay. It helped me reframe and set boundaries. I worked at the VA, and it really helped love, cherish, and not take on the 'stuff' of my patients.”

-Miriam Volpin, RN
Twitter: @marachne

Know your limits...

“Back in 1994 when I was newly hired and the one and only bereavement counselor, I called a few other hospices in an attempt to learn what they offered in bereavement as I tried to figure out how to best ‘grow’ the program. I was frustrated to realize that although all hospices had a bereavement program there was great variation in what was offered and how they provided services. And I became rather overwhelmed with all the possibilities as I talked to others until someone from a hospice in Florida cautioned me ‘You can’t do everything you would like to do, so do the best with what you can do.’ Sounds rather simplistic but it has served me well over the years and it is the same advice I pass along now to others who turn to me for guidance.”

-Patti Anewalt, PhD, LPC, FT
Twitter: @patti_anewalt

Reflect on what it means to see yourself in your patients...

“As I began my seminary fieldwork placement as a student spiritual caregiver in the palliative care unit of a hospital, my supervisor/mentor said to me:

‘Throughout the course of your time in this work, you are going to meet "yourself" in many a patient. After each time that occurs, take the opportunity to explore and reflect on what that means for you – where it touches your life – and how you can use what you learn in that process to assist you in empathizing with and accompanying others during their final days of living. It will teach you, in many different ways, how you can be truly "present" with someone.’

I have never forgotten that advice ... and I am still learning after many years of providing spiritual care in our local hospice.”

- Rev. Ian Smith, BA, STM, Dip.
Twitter: @RevIanSm

If you have advice you were given that you would like to pass on, please add it to the comments section. Interested in participating in the next Pallimed Roundup? Have ideas for a question? Add it to the comments!

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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.

Drew Rosielle, MD is a palliative care physician at University of Minnesota Health in Minnesota. He founded Pallimed in 2005. For more Pallimed posts by Drew click here. 

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

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by Christian Sinclair

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

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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:


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


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.

• Reason #1 They need to face the fact that they are dying
• Reason #2 It’s not fair to the patient to lead them on
• Reason #3 If things don’t work out as expected, they’ll be devastated
• Reason #4 They’ll feel betrayed if they find out you were leading them on

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

• Sit up and look out the window
• Pat the cat
• Feel the breeze
• Get a foot massage

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.


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

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


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,

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


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.

Follow @hpmchat and go to www.hpmchat.org for up to date info.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

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.

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by Drew Rosielle

(This is the third 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," and "Compassionate Extubation." - Ed.)

"Palliative Sedation."  Golly I hate this one.

Frankly 'terminal sedation' was better, because it was at least less confusing, but  neither of them are clear or transparent, and particularly 'palliative sedation' is just so confusing and potentially laden with too many meanings to be ever useful. There are so many clinical scenarios out there in which someone is sedated (deliberately, or as an aftereffect of trying to control pain/anxiety/dyspnea/etc; deeply or lightly; continuously until death vs temporarily as respite) in circumstances that the average person would agree would be 'palliative' or 'of-palliative-intent' that the term is useless.

There have been some people in the literature who call it some variation of 'deep, continuous sedation,' which I like a lot better, because it's a basically accurate description of the practice, at least the practice which is meant most of the time by 'palliative sedation' but not all the time, which sometimes gets contrasted with the 'proportionate palliative sedation' moniker, because there are so many different types of sedation-which-is-palliative, and OH MY GOD, right?

If we have a term which needs so much parsing, we need a different term.

If the thing you are talking about is deliberately inducing a state of unconsciousness, and keeping a patient in that state until they die, as a means of controlling otherwise uncontrollable symptoms in a dying patient, 'deliberate, deep, continuous sedation in a dying patient' seems about as accurate and parsimonious as you could get. There are people who propose this sort of sedation as a temporary measure, which I've never done, but you could then say 'deliberate, deep, respite sedation for severe symptoms' or some variation. If what you actually mean is aggressively managing symptoms with drugs even if some level of sedation is the consequence, then just say that, and not the reactionary, befuddled 'proportionate palliative sedation' monstrostiy.

Besides the ridiculously confusing nature of the phrase 'palliative sedation,' it's another example of the myriad ways in which 'palliative' is used: care-which-is-palliative, care-which-is-given-by-a-palliative-care-team, palliative pediatric cardiac surgeries, palliative chemo, used synonymously with 'comfort care', 'going palliative' etc etc. It just makes it worse for us to have the term pegged to this practice which, strictly defined, seems to happen very rarely in the US (deliberate, deep, continuous sedation), and reinforces an image of our care teams as people who just drug the hell out of patients. I once met a hospitalist who shook my hand and said to me kind of as an aside 'You know, I'm very pro-palliative sedation," as if he expected me to make eye contact and nod, in some sort of manly acknowledgement that I understood how forward thinking and progressive you are, what a friend to palliative care you'll be.

In all honesty, I thought to myself "OMG you are an idiot and I don't like you and I bet you're not comfortable with your patients' existential pain." Turns out, first impressions really are accurate, but that's another story. 

Drew Rosielle, MD is a palliative care physician at University of Minnesota Health in Minnesota. He founded Pallimed in 2005. For more Pallimed posts by Drew click here. 

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

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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.

Amen


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

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by Drew Rosielle

(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.

Drew Rosielle, MD is a palliative care physician at University of Minnesota Health in Minnesota. He founded Pallimed in 2005. For more Pallimed posts by Drew click here. 


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

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by Christian Sinclair

Congrats to all of the 200+ new attending hospice and palliative medicine (HPM) physicians who completed fellowship at the end of June. We've already compiled advice on how to be the best physician you can be, but now you are probably starting to think about passing the HPM boards come November 7th, 2016*. (Same goes for those fellows who finished in 2015, since the board exam is on a two-year cycle.)

You will find some good information on the American Academy of Hospice and Palliative Medicine (AAHPM) subspecialty certification page. But beyond knowing the blueprint and areas covered by the exam, what you can you tangibly do to help ensure you pass the boards?

First, go back to your fellowship. Talk to your faculty and mentors about their own experience if you have not already. Review the talks and educational opportunities you had during your fellowship. You have good, free accessible educational materials, so use them.

Second, make the most use of the free stuff out there! In 2012, Pallimed and Geripal writers** got together to make board prep questions based on articles covered by the two blogs. If you do not have your copies of Blogs to Boards, then get them here now! The first PDF has just the questions so you are not tempted to peek. The second PDF has the questions with fully referenced answers and explanations so you can understand the concepts better. If you are a fellowship and want to use these questions, please go ahead, they are open access. Share, share, share. Just a bit of caution, these questions are four years old, and we have not revised it, so if you find anything out of sorts, please let us know. But, hey it is free and written by "well-respected" bloggers, so it's got that going for it, which is nice.

If you have time and some new attending money to spend, then you have a lot of options. The AAHPM Intensive Board Review Course is in two weeks. They have great faculty lined up and you will likely pick up some things you didn't necessarily catch in fellowship. I'll be there in Pittsburgh attending some of the other Summer Institute offerings, so if you are going stop me and say hello! Other board review courses are being offered by MD Anderson (I'll be there too, teaching this time!) and Mt. Sinai both in September. I don't know of any on the West Coast.

If your travel is all locked up because of your new job, then you may be interested in the newly released (this week!) HPM PASS 3rd edition. I have done both previous editions of HPM PASS, and will be getting the third edition soon. There are 150 questions so as a member it is a little over $1 per question which is a steal considering how freakin' hard it is to write good questions (See Blogs to Boards above).

Some other good tips:

• Review the archives of PC-FACS (available in the Journal of Pain and Symptom Management and through AAHPM)
• Review FAST FACTS available from the Palliative Care Network of Wisconsin (PC-NOW) - How many should you review? At least the 50 Essential Fast Facts, but hey you have several weeks so devour as many as you can.
• While you are at PC-NOW, check out the Fast Fact Quiz (and archives) - More free questions!
• Read the UNIPAC series, especially the book on Hospice to make sure you get your Medicare Hospice basics down. Sometimes these important issues can get lost in fellowship training.

Any of the nearly 7,000 board certified HPM physicians have any other good resources and tips? Share them in the comments below.

*Allopathic boards test date. The 2016 CAQ for DOs dates are not readily available. Does anyone know when they are?
**Makowski, Tatum, Rosielle, Widera, Sinclair

Christian Sinclair, MD, FAAHPM is a board-certified hospice and palliative medicine physician at the University of Kansas. If anyone wants to do something new with Blogs to Boards, he is all ears! Full disclosure, he is the current President of AAHPM, but he does not get a cut of any of the AAHPM items he is recommending above. They are truly great options. Just wanted to be clear. Also, I have nothing to do with the Board test questions (and neither does AAHPM by the way). 

Illustration Credit: Christian Sinclair, original image from Caddyshack