Thursday, June 14, 2018

Don't ask a dying man if he wants bacon or sausage

by Lizzy Miles

It has been four years since I first wrote the article “We Don’t Know Death: 7 Assumptions We Make about the Dying” for Pallimed. You would think that with four more years of experience I would feel more confident in my knowledge about my job and my patients. I don’t.

In fact, I’m still uncovering assumptions that I make when working with patients who are dying.

Recently, I discovered Assumption #8: Dying patients want to be in control.

I had so many reasons and examples to believe this, from the very beginning of my hospice work. I came to this conclusion after just a short time volunteering. One of the hospice patients I visited would have me adjust the height of her socks continuously for ten to fifteen minutes. At first I didn’t understand and I thought to myself that she must be a little obsessive. Then I had this a-ha moment.

She can’t control the big things, so she wants to control the little things.

This assumption held up for a while. I would have frustrated caregivers who would tell me that their dying loved one was impossible and demanding over little stuff: the lights in the room, the arrangement of the drapes. These caregivers would be exasperated. I would validate their feelings of frustration, but also encourage them to empathize. I’d tell them that it’s tough to be dying. The dying need to control what they can. Often this worked to provide some relief to the caregiver, if only briefly.

Slowly, though, my solid belief in the dying person’s desire for control began to unravel. True, there are some patients who still very much want to be in control…but not everybody.

Everything came to a head when I met “John.” I asked him the dignity question, like I always do. He scowled at me.

“How dare you ask me such a deep question. How am I supposed to answer that?” His was one of the most difficult assessments I had to make because he didn’t like questions. He told me his wife asked too many questions. He told me he wasn’t doing well, but “there’s no point to talk about it.”

Later that day, his wife (I’ll call her “Sally”) came into the inpatient unit, and I returned to the room to meet her.  We sat on the couch across the room while John was finishing a visit with a Pastor. Sally talked about how sweet John used to be. She said lately though he had been taking his anger out on her. We had moved to his bedside when Sally said to me, “All I ask is whether he wants bacon or sausage and he yells at me.”

At this point, John rolled his eyes.

I looked at him, and then after reviewing our first interaction in my head, it dawned on me. He is overwhelmed. Unlike other patients who want to control every little thing, John was irritated by the decisions he had to make. I turned to Sally and said, “I know you are trying to please him and give him what he wants, but right now, he has the weight of the world on his shoulders. The act of deciding whether he wants bacon or sausage is so insignificant to him right now.”

I looked over and John was nodding vigorously. Sally was listening intently. “But what do I do? I want to make things easier for him.”

Side note: Surprisingly, we can learn things from television medical dramas. I had been watching The Good Doctor and there had recently been an episode about how a doctor with Asperger’s was irritated with being asked questions. Another doctor realized that giving him statements, rather than questions, are better.

So I suggested to Sally. “Don’t ask him whether he wants bacon or sausage. You pick what you’re making and tell him, ‘I’m going to make you bacon and eggs.’ If he doesn’t want that, he will let you know.

John nodded vigorously again and said emphatically, “Oh yeah I would.” Both were smiling. We were then able to move on to life review and by the end of the visit, the grumpy patient was calling me “Darling.”

So how do you navigate learning and understanding patient preferences to have control or give up control? They aren’t always able to tell you but it's not hard to figure out if you're looking for it. Generally, I would say to start with the premise (okay yes, assumption) that they do want to feel in control.

For the patient who wants control:

  • Frequently reinforce that they are in charge.
  • If the family tries to take over conversation, always look to the patient until the patient verbally defers. (One exception is if there is a cultural component that an established family point person represents the patient).
  • Ask permission before you sit.
  • Ask permission to visit.
  • Don’t assume they want the television or the lights on/off. Ask.
For the patient who is tired of decisions:
  • Consider how you might get information by making statements instead of asking questions. Say: “I wondered how you were doing today.” If you raise your voice at the end of the statement, it’s still a question. Try saying the statement and then sitting with the silence. A non-answer might be an answer in itself.
  • If you get more than one “I don’t care” as an answer to a question of choice, be mindful of decision fatigue. Tell the patient what you’re going to do and leave space for them to state a preference.
  • Listen for cues from the family indicating that they’re having newfound interpersonal communication issues and provide education when appropriate.
  • Know that when patients express untruths ("lies") it might be a sign of question fatigue.

  • Photo credit: bacon by Andrew Ridley on Unsplash
    Photo credit: trees by Evan Dennis on Unsplash
    Photo credit: breakfast by Karolina Szczur on Unsplash

    Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW

Thursday, June 14, 2018 by Lizzy Miles ·

Friday, June 8, 2018

Pallimed Birthday - Lucky 13

by Christian Sinclair

Anniversaries are a fun time to celebrate, but the fun ones end in numbers in 0 or 5. For other anniversaries, it is a good time to take stock, reflect on the past and look towards the future.

Today is our 13th anniversary of Pallimed, which Dr. Drew Rosielle started in 2005 when blogs were THE thing to do in social media. We also spent many of those early years helping people understand the power of communication through social media with projects like #hpm chat on Twitter, encouraging tweeting from conferences and the advocacy power of our Pallimed Facebook page. With that focus, we have drifted away from original content being the main thrust of our efforts, but have still strived to create good content with strong posts from great writers like Lizzy Miles and Drew Rosielle among others. We are still dedicated to the website and will continue to post always.

Of course, this effort does not happen without the work of many people. I am indebted to Lizzy Miles (Pallimed editor), Megan Mooney-Sipe (Lead Facebook Contributor), Meredith MacMartin and Renee Berry (#hpm chat) for leading some of the core projects of Pallimed. A big thank you to other volunteers who have helped with various projects in the past year including: Jeanette Ross, Kristi Newport, Ashley Deringer, Gary Hsin, Joe Hannah, Lori Ruder, Niamh van Meines, Emily Escue, Ben Skoch, Jen Bose, Liz Gundersen, David Buxton, SarahScottDietz, Sonia Malhotra and Vivian Lam.

Since Pallimed has always been a volunteer effort, we are of course on the lookout for great new volunteers to join us and if you have been a part of Pallimed in the past, we would always welcome you back. If you have a great idea for a series of posts, podcast, videocast, journal club, book review, film review, journal article review, this is a great place to publish it. If you are not the creative type, there are a ton of admin projects that need to get done behind the scenes. Many hands make light work and I can tell you it is a blast being part of a team that makes a big difference...together. We have an audience of over 50,000 across all of our platforms so if there is something that needs to be said, we can help you say it. If you are not sure what to say, I have plenty of writing assignments where I am looking for writers. As a bonus, this work can be used for academic promotion if that is something you need. I've seen work for Pallimed get cited in promotion applications!

So the state of the blog is steady. We are staying the course, but always on the lookout for other smart, dedicated, passionate people who want to make a difference for palliative care and hospice. Let me know if that is you.

Christian Sinclair, MD, FAAHPM is the Editor-in-Chief of Pallimed. He is always surprised he wrote the most for Pallimed when he had infant twins in his house.

Friday, June 8, 2018 by Christian Sinclair ·

Wednesday, June 6, 2018

The Not-Quite Annual ASCO Round-Up - 2018 edition

by Drew Rosielle

The American Society of Clinical Oncology annual meeting, besides being a feast for the pharmaceutical business news pages (google 'ASCO' and most of the hits will be about how announcement X affected drug company Y's stock), is also one of the premiere platforms for publishing original palliative-oncology research. So every year I try to at least scan the abstracts to see what's happening, and I figure I might as well blog about it. It's tough to analyze abstracts, so I'll mostly just be summarizing ones that I think will be of interest to hospice and palliative care folks. I imagine I've missed some good ones, please leave a link in the comments if I have! My major observations on this year's abstracts is that there was very little about symptom management compared to years past, except for neuropathies.

(Past ASCO reviews here - 2008, 2017 - Ed.)

Pain and Symptoms
Systems Issues
  • Claims and SEER database study suggesting that earlier palliative care involvement in pancreatic cancer reduces some costs. 
  • Patients in Medicare managed care organizations use hospice a little more than fee for service Medicare patients 
  • Barriers to palliative care involvement in patients receiving stem cell transplants, including this data point, which is something I've personally wondered about a lot: "Higher sense of ownership over patients’ PC issues (β = -0.36, P < 0.001) was associated with a more negative attitude towards PC [by hematologists]."  
  • EOL spending was higher in ACO patients vs non-ACO patients.  
  • A retrospective study which compares many outcomes in patients who receive early palliative care inpatient vs not. The title abstract highlights survival (which was a bit longer in the palliative group). Please do not quote this abstract however to claim that PC prolongs survival in patients with cancer: this is messy retrospective data, and it's not even clear from the abstract whether the survival difference was in univariate or multivariate analysis (PC patients, eg, were younger, more likely to be discharged home, etc.). Similarly, a Canadian study looked at early palliative care consultation in pancreatic cancer (retrospectively) and apparently showed that late but not early palliative consultation was associated with longer survival. The same study also showed that having metastatic disease at the time of diagnosis was also associated with longer survival, so I'm not going to make much of any of this.

Drew Rosielle, MD is a palliative care physician at the University of Minnesota Health in Minnesota. He founded Pallimed in 2005. You can occasionally find him on Twitter at @drosielle. For more Pallimed posts by Drew click here.

Wednesday, June 6, 2018 by Drew Rosielle MD ·

Friday, May 25, 2018

Studying for the 2018 Hospice and Palliative Medicine Boards

We have started to get a lot of questions about how best to study for the 2018 Hospice and Palliative Medicine Board Exam. Yes, that one that many of us took a little less than 10 years ago and now it’s coming due. Or the one that you need to take after completing your fellowship this year.

So, to help answer these question, we at Pallimed and GeriPal have created a quick guide to the top 5 resources we use to prep for the boards:

  • AAHPM's Intensive Board Review Course: the ultimate live in-person prep that includes a pretty stellar cast of speakers including Mary Lynn McPherson, Kim Curseen, Sandra Sanchez-Reilly, Joe Shega, Drew Rosielle, Michelle Weckman, Scott Schwantes, Janet Bull, Jeff Spiess, and Gregg VandeKieft. The course takes place this August 9-11, 2018 in Minneapolis, MN, and will include both lecture-based content plus lots of exam-type questions to help you pass the test (and brush up on your hospice and palliative care knowledge). Plus you get to hang out with a bunch of cool palliative care colleagues.
  • The Pallimed/GeriPal Blogs to Boards Questions: yes, it's slightly dated but hey, so are the exam questions (it takes a couple years for the exam questions to get into real life circulation). Plus, the great thing about these questions is that we can update them on the fly. So if you notice a question or answer that needs updating, send the edits our way and we will make the changes. Questions Only Handout; Questions and Answers Handout
  • Essential Practices in Hospice and Palliative Medicine: For those who've been in the field for a while, you may remember the book series called "UNIPAC". This was our go-to resource when studying for the boards 10 years ago, and remains so today, just with a different name. It's a comprehensive 9-volume self-study tool that has been completely updated for its rebranded "Essentials" name. Plus it comes with an online confidence-based learning module to test your level of knowledge and level of confidence in each topic area presented in the book series.
  • Fast Facts: a great, free resource for a quick how to for over 350 palliative care issues.
  • HPM PASS: Need more exam questions. Get AAHPM's HPM PASS for an additional 150 questions.

We would love to hear what other resources you have used and found helpful. Add them below to the comments section at either the GeriPal or Pallimed websites.


The folks at Pallimed and GeriPal

Friday, May 25, 2018 by Christian Sinclair ·

Sunday, April 22, 2018

Join the #hpm Tweet Chat This Week in a Research Initiative with the Brain Cancer Quality of Life Collaborative

The Pallimed community is invited to participate in the #hpm Tweet Chat this week which help inform and shape a comparative effectiveness research proposal being designed by the Brain Cancer Quality of Life Collaborative, an initiative led by a team of patients, care partners, advocates, neuro-oncologists, and palliative care professionals.

The #hpm Tweet Chat is this Wednesday, April 25th, 6-7p PST/9-10p ET.

Topics for the chat are available here, in the #hpm chat’s blog post, How might we introduce palliative care to people with complex neurological conditions, by Liz Salmi and Bethany Kwan, PhD, MSPH.

In October 2017, the Collaborative was awarded $50,000 from the Patient-Centered Outcomes Research Institute (PCORI), to drive improvements in palliative care experiences for patients with brain cancer and their families.

With the belief that families want to spend time building memories, not navigating the healthcare system, topics for the #hpm chat week were shaped by Bethany Kwan, PhD, MSPH, and Liz Salmi.

Bethany Kwan, PhD, MSPH, is a social psychologist and health services researcher at the University of Colorado School of Medicine and a daughter and care partner of a person who had glioblastoma. Liz Salmi is a communications professional with expertise in design, community organizing and digital communications. Liz has been living with grade II astrocytoma since 2008, blogs at and when she isn’t talking about brain cancer, she’s working on OpenNotes, an international movement focused on making health care more transparent.

Here is a Twitter list of the leaders in the Brain Cancer Quality of Life Collaborative and a photo below.

Mark your calendars for April 25th and join the discussion this Wednesday. Learn more about #hpm Tweet Chat and this initiative here.

Sunday, April 22, 2018 by Renee Berry ·

Monday, March 12, 2018

Social Media at the 2018 Annual Assembly of Hospice and Palliative Care

by Christian Sinclair (@ctsinclair)

The Annual Assembly of AAHPM and HPNA is this week and if you are going to Boston, or staying home to keep things running smoothly, social media can help make your conference experience be transformative.  Since 2009, the Assembly has been making use of Twitter to provide additional insight, commentary and sources for the multiple sessions each day. Now things are expanding to dedicated conference apps, Facebook and Instagram. And for the first year ever we have Twitter contests.

The official hashtag of the conference: #hpm18 (works on Twitter, Facebook, Instagram), use it in every tweet this week! (Are you wondering why the hashtag for our interprofessional field/assembly is #hpm and not #hpc? Read more here.)

The Pallimed Network will feature content across multiple platforms and will include the HPM chat account from Twitter.

Pallimed Network Accounts
Official Annual Assembly Social Media Links
American Academy of Hospice and Palliative Medicine: 
Hospice and Palliative Nurses Association:
Social Work Hospice and Palliative Care Network (Not part of the Assembly, but having a conference right before)

Monday, March 12, 2018 by Christian Sinclair ·

Handy Hints for Attending a National Healthcare Conference - Updated!

by Christian Sinclair (@ctsinclair)

In the early years of Pallimed, I was brand new to going to national conferences focused on healthcare. It was exciting, exhausting and at times overwhelming. I started collected little bits of wisdom I picked up from others and some I discovered myself. They were compiled into the original Handy Hints for a National Meeting back in 2005, with updates along the way. With the Annual Assembly of Hospice and Palliative Care coming up this week, I thought I should revisit them since I have not updated it since 2011. Please feel free to comment and leave thoughts from your own experience.

Updated layout for before, during and after the meeting. Additional contributions by Emily Hahn, Allie Shukraft, Lori Ruder, Amy Davis, Kyle Edmonds, Sharon Hudson, Holly Yang among others!

Before the Meeting

* If you are bringing family or a significant other, spend some time with them.
* If you don't bring family or a significant other, leave something nice for them to discover at home while you are gone OR get something for them while you are gone.
* Pack and wear comfortable shoes, you will be doing a LOT of walking! But try to be a little stylish, you don't know if you will be going out to dinner later and have no chance to get back to your hotel room.
* Pack and wear layers as some rooms are colder than others (oddly seems to happen in every convention center!)
* If you’re presenting, get the slides in by the deadline so people can download your presented slides. No one likes seeing 'slides not available on the website or USB.'
* Figure out the general dress code of the conference ahead of time, some are more formal than others.
* Download the conference app, it can be very helpful!
* Review the schedule before pick a back-up session, in case a session is not what you thought it would be.
* Create a file for new discovery- your head will be full of inspiration which trickles out when you are back at work.
* Schedule a conference review educational session for after you get back from the conference.
* Find an influential blog in your field, and see if they want you to write a conference review.

* If it is a conference outside the US, check your cell phone for extra costs/access BEFORE you go!
* If the city is not well known to you, read up on the city on Wikipedia. You might be surprised what you learn about where you are going.

* Bring business cards, lots of them. Make sure they have your email on them. (If they don’t, write your email a number of the cards so when you hand them out, you are not trying to find a pen to add it.)
* Have digital access to your UPDATED CV/resume, regardless of whether you are looking for a job. Many people may want to know more about you for networking reasons, not just job offers.
* Update your public-facing social media profiles (Twitter, LinkedIN) before you go to a conference as people may be checking you out without asking you.
* Know the hashtag for the conference and use it in your tweets before you get to the meeting. Share what you are looking forward to seeing. (AAHPM conference will be using (#hpm + yr) like #hpm18)
* Connect with attendees before you go through social networks like Facebook, LinkedIn or Twitter.
* Put together or join a fun GroupMe/WhatsApp/Slack/Facebook Messenger conversation to keep in touch, share reminders of sessions to see, and keep each other amused.

During the Meeting

* Reconnect with old friends. A great reason to keep coming back to the same conference!
* Turn in session evaluations in a timely manner. And give some valuable feedback. Bad speakers need to know they are bad and why and what to improve. Be specific! Don't give bad speakers a 4 out of 5!
* Find someone who is organizing the event and let them know they are doing an excellent job. They don't hear it enough. They are probably pretty exhausted from putting out everybody's "EMERGENCY!" They have put in a lot of hard work and seldom get recognized.
* Find the conference chairs and thank them. While possibly celebrities in the field, they don't always get personal recognition for the months of work put into coordinating the activity.
* Eat healthy. Grab a piece of fruit for later.

* Try and get out and see the city you are in, since you never know when you will be back there or if it will be devastated by a major hurricane, flood, earthquake, killer tomato, or anarchists.
* Figure out where the coffee is early.
* Go outside as often as possible even if it’s inclement.
* Don't stay in your hotel room too much, you'll miss too many opportunities.
* Stay in your hotel room sometimes. Take some time to unwind and be yourself.

* Try to ask a question in at least one session that strongly interests you.
* When you ask a question, first thank the speaker, introduce who you are, and where you are from (quickly). This helps calm you down if you are nervous to ask your question. It also lets the audience know if they want to talk to YOU after the session if they have similar interests.
* Don't hog the mic. Ask your question succinctly. Other people have questions too.
* Don't just depend on your notes during each session; chances are you will never look at them again. Write down key facts you have learned towards the end of the day.
* Pick a method to highlight key facts or notes. Tag good notes with a star or different color pen while you are taking them. When you get back it will make it much easier to find the 'GREAT' ideas or 'ACTIONABLE' plans. Or you can Tweet the really good ones too.
* Go to the poster sessions and talk to the people who made the posters. A lot of hard work went into most of these, and everyone likes to hear when they have done a job well.
* Go to at least one paper session. The concurrent sessions are great but you can find out some interesting up and coming things in the paper sessions.
* Go to at least one session that seems interesting but doesn’t relate to what you do - you may still learn something useful. Sometimes the best presentations are those which surprise you - take a risk with something new.
* It’s okay to leave something boring. Make the most of your time at a conference. Look on Twitter and see where the action is - go there!
* Ask other attendees what talks they are going to or avoiding. You may find something interesting you had previously overlooked.
* It’s okay to skip some sessions and take a nap, learning is hard work
* After a session, if you talk with a speaker, make your point or ask your question, and then allow others to interact. Nothing is worse than the know-it-all who wants to take up all the time of the presenter without regards to other people's interest.
* Do not work on the slides the night before your talk, because you should be having fun with friends and colleagues.
* Don’t heckle presenters (online or in real life); we’re on the same team.
* Add to your file for new discovery for yourself and for the conference review you will be giving when you get back to work.

Networking In Real Life
* Talk to people.
* Don't sit by yourself unless you are the first person in the room.
* Sit next to someone and then introduce yourself. Then ask all about them; you will be surprised how much people enjoy talking about themselves.
* Take the opportunity to meet Twitter friends for real.
* There is usually a bulletin board in a central place where people post messages: Look there for any messages regarding you or get-togethers you are interested in.
* If people are going out to eat or drink at the end of the day, go with them! It’s fun to make friends!
* When you go out with other people, you do not HAVE to talk about your field. (The people at the table next to you may appreciate that). Make a game to see how long you can go without talking about your work.
* You should make lunch/dinner plans with people outside the group you came with, but invite your group along too, if appropriate.
* You don’t have to stay with the people you came with during the day, but keep in touch via text, losing people is easy.
* When receiving a business card, immediately write down the topic of interest you were discussing with that person. If the time isn't right, then do it soon afterwards. When you get home, you will have met so many people, you won't remember who that person was. Opportunity lost.
* If you get someone's business card, and you don't care if you ever interact with them again, make a special symbol that only you know on it, so you know to throw it out when you start going through all the business cards. Not everyone you meet is going to be a hub of a network you need.
* Put something colorful or interesting but not too noticeable on your name badge. People will ask you about it and then you can tell them what it signifies. Note: Do not say, “It signifies something to get people to talk to me.” Although that would be pretty funny.
* Trying to hire people? Get a custom printed bag that says "Now hiring!" with your logo or something clever that will get people to talk to you.
* Don't be afraid to talk to someone you admire or 'celebrities' in the field. Just because they present/are an author/have experience doesn’t mean they won’t want to meet you. They may become a friend a future collaborator. Many well-known people are willing to talk*, just make sure they are not in a rush for somewhere else. If you don't read the situation right, they will cut the interaction short, and you will think they are a big jerk. Remember, a lot of people would like to have their attention. (*Especially in hospice and palliative care!)
* Do not be afraid to talk to someone you admire.
* Go to the welcome reception: posters, food, and people!

Networking Online
* Know the hashtag for the conference and use it in your tweets. (AAHPM conference will be using (#hpm + yr) like #hpm18)
* See who is tweeting from the conference and strike up conversations with them and try to meet in real life.
* Know what your conference policy is about posting slides and pictures. Some conferences are pretty draconian. If you decide to post them against the rules, it is good to know what is expected of you.

After the Meeting

* Everyone has ideas on how to make a conference better. If you share them with the organizers, be constructive and understand there are often several factors that influence why certain decisions were made and they are not always clear to the people attending. You don't really want to know all the details in how conferences get put together. It is tough work!

* Review your file for new discovery and put ideas into action!
* When you come back to work, schedule a conference review educational session to share everything you learned there. After that is done, ask to go again next year!
* Get ready to submit what talk you are going to present next year.

* Use the business cards you collected during the meeting to see if anyone is on LinkedIn. This makes it easy to get their latest contact info and you can toss the card since you have an updated digital version.
* If you contact someone on a social network after the conference, be kind and add a little note about why you are connecting with them. They likely met a lot of people and may not remember you. And with your notes you wrote on the business card (see Networking In Real Life above), you look like you have a super memory!

If you have any other tips, please share on Twitter @pallimed or comment below (or both!) Handy Hints for a National Meeting is archived online at Requests for use/modification should be directed to ctsinclair -at - pallimed org

by Christian Sinclair ·

Monday, February 19, 2018

Frequently Asked Questions about Health Care Power of Attorney (HCPOA)

by Lizzy Miles (@LizzyMiles_MSW)

Sometimes when we encourage patients to complete a Health Care Power of Attorney (HCPOA), the patient declines the offer based on mistaken assumptions they have about the document. We never want to push a patient into doing something they don't want to do, however, sometimes their resistance is based on a misunderstanding. In an attempt to help address mistaken beliefs and/or concerns, I created a FAQ for our patients. This also can be used for staff as talking points for the discussion.

I don’t need one, I am my own decision-maker and I always plan to be.
As long as you are able to speak for yourself, you are your own decision-maker. However, as part of the disease process, many hospice patients get to a point where they are unable to express their own wishes. When you designate a HCPOA who understands your point of view, they can step in and tell us what you would want in a situation when you’re not able to tell us.

I want to maintain my independence. I don’t want to give up control.
A HCPOA only has authority to speak when you are no longer able to share your own preferences. As long as you are still able to indicate your wishes, will we ask YOU.

I don’t have anyone I trust to make my health care decisions.
If you don’t have a designated decision-maker, you could end up having someone you don’t want or don’t know making decisions for you if you can’t express your own wishes. If you don’t know of anyone in your friends/family circle that you can designate, you could contact a professional representative such as a lawyer.  Remember, as long as you are able to express your own wishes, we will ask you what you want.

My next of kin (next closest relative) would be my decision-maker. Why do I need a form too?
When you designate a HCPOA, you are creating a written document of whom you want to represent you when you are no longer able to speak for yourself. This extra step can be helpful for other family members to know that you’ve confirmed in writing who you trust to speak for you.

I have a big family. I don’t want to hurt anyone’s feelings.
We rarely see hurt feelings in families as a result of a patient completing this document. In fact, written documentation with this specification of who you choose to be your future decision maker makes decisions easier. Sometimes with big families there can be many different opinions expressed. A written document designates a point person of your choosing to make the final call. Each family is different. If you think it might be helpful, you could tell your family why you chose certain individuals. Ultimately, it is a bigger challenge to family dynamics to NOT have this paperwork.

I may change my mind.
If you are still able to make your own decisions, you can always change the paperwork.

I don’t want to think about this right now.
It’s understandable that the thought of having someone else making decisions on your behalf may be unpleasant. We encourage patients to complete the paperwork now rather than later because it can bring peace of mind. A completed Health Care Power of Attorney will assure you that if/when you are no longer able to speak for yourself that your representative is someone you chose.

I have a document from another state.  Isn’t that good here?
It could be. If you completed a valid legal document in another state to designate your Health Care Power of Attorney, our state's medical professionals might be able to honor it. We need to review it to be sure. We recommend that you share your document with hospice staff to ensure that we understand your choices for decision-makers.

I think I completed a Health Care Power of Attorney before but I don’t have a copy. 
If you don’t know where your document is, then we are unable to honor it. If/when you are not able to make your own decisions, we would need a copy of the written documentation of your chosen decision-maker. This is for your own protection to ensure we are checking in with the right person.

Can’t I just tell you who would be my decision-maker?
You could, but in the event that you have interaction with other medical professionals, they wouldn’t know what you told us. When you put your preferences in writing, it’s a physical document that you can share with whomever is providing care.

We hope you found this FAQ to be helpful. Let us know via Twitter, Facebook or email.
Feel free to use this article in your workplace with the attribution:

 Used with permission from @LizzyMiles_MSW and

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and a regular contributor to Pallimed. She is the author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW.

Photo credits
Title Photo Thien Dang on Unsplash
Monkeys Park troopers on Unsplash
Shoes Photo by Matheus Bertelli from Pexels

Monday, February 19, 2018 by Lizzy Miles ·

Friday, February 16, 2018

2018 12th Annual Pallimed-GeriPal Party

by Christian Sinclair (@ctsinclair)

Every February the questions start rolling in, "When is the Pallimed-GeriPal party?" Just so you know and can mark it on your calendars from here to eternity, it has a standing reserved spot on Thursday night at 9pm local time the week of the Annual Assembly of Hospice and Palliative Care (but just to be clear it is not an official part of the meeting). And as always, feel free to invite and bring any colleagues or new friends with you as this is not an exclusive crowd.

So for 2018, that means you should clear off the evening of March 15th. We will, of course, be doing our traditional pub crawl starting at Sonsie at 9pm. Around 10pm we will likely be moving on to the next destination. Like always though, these are rough estimates of time, so if you want to know the details, follow the hashtag #HPMparty on Twitter. You can also find information and people talking before, during and after the event on the Facebook Event page.

And new this year, we are adding an event! Get ready for the first ever #HPMparty Escape Room! We are partnering with Escape the Room Boston to reserve three different themed rooms over five time slots from 7:20 to 9:40. (We can open up a later one if the demand is high!) You can always join up with the pub crawl before or after (or not at all, if that is not your thing!). No need to buy anything or sign up for anything if you are just doing the pub crawl.

ESCAPE ROOM DETAILS: Each room holds 8-12 guests where you will work together solving puzzles and clues with excellent communication skills (honed as excellent hospice and palliative care clinicians of course). It will cost $30 per person and we only have around 60 slots, so sign up soon! All of the Escape Rooms are reserved exclusively for us, so you will be working with fellow clinicians and not somebody on their first date...awkward! You will want to get to the Escape room 15 minutes ahead of your scheduled time and it takes 15 minutes by car and 20 minutes by train. Be on time! Once your room starts you will be there no longer than 70 minutes (60 to finish the room and 10 to wrap up). If you are good you’ll be done early!

Example: Reserve the 9:00pm time slot. Leave for Escape the Room Boston at 830 to get there by 845. Do the Escape room at 9p and be done at 10p, take pics and leave!

Ways to follow the party from near or far:
#HPMparty twitter feed
#HPMparty Facebook Event Page

And if you are not already doing it - Follow Pallimed on Facebook, Twitter and Instagram and Follow GeriPal on Facebook, Twitter and your favorite podcasting app.

Friday, February 16, 2018 by Christian Sinclair ·

Wednesday, February 14, 2018

Did You Have To Say “Yet”?

by Ryan Nottingham and Gregg VandeKieft (@vandekieftg)

A middle-aged man* came to our ambulatory palliative care clinic with his family. With the exception of his recently diagnosed brain tumor, he was in peak physical condition. His diagnosis weighed heavily on his family and his personality changes and angry outbursts left them frayed. He did not feel the same burden as his family since these outbursts came to him in the form of blackouts. We could visualize him as a man of few words before his diagnosis, someone who would speak up with a dry one-liner. During this visit, his humor was touched with acidity. As we began our conversation, his pent up frustration slowly infused into the room. His wife was able to put her concerns on the table while his children held his hands. He visually softened and received their words without response. After the catharsis, when all questions had been asked and tears had been shed, the family looked exhausted but ready to move forward. Before the visit concluded, the physician completed a brief physical assessment. As he worked his way through the neurological exam, he noted positively to the patient, “no loss of strength yet”.

The patient looked up at him and with a thick voice asked, “Why did you have to say ‘yet’?” The pause was palpable. Visibly chastened, the physician responded, “You’re right. I apologize. That wasn’t very sensitive.”

Providing seriously ill patients with an honest idea of their disease while also helping them maintain a sense of normalcy in their life can be a delicate balance. Our language is laced with subtle reminders of prognosis. They do not have a disease, it is a progressive disease. Suddenly, CPR moves from being a standard measure to a heroic measure. Even if the phrases do not attest to lifespan, there are also reminders of their perpetual patient status. Our clinic recently went through a name change, from outpatient to ambulatory to avoid this exact issue. And the implications of the single word “yet” conveyed a message clearly heard by the patient that this seasoned palliative care physician, highly regarded for his communication skills, had in no way intended: “Your tumor hasn’t robbed of your strength yet, but it will!”

As much as we use our words to care for our patients, they also have the potential to cause harm. Many medication side effects are frustratingly vague and similar to potential disease symptoms; fatigue, headache, moodiness, and nausea, for example. While counseling patients to be aware of these effects, we can inadvertently trigger them to be hyperaware of their body processes. This information can subsequently lead to new or exacerbated symptoms that might not have been an issue otherwise. Allocating the appropriate amount of emphasis on various counseling points can ensure the patient is both well informed and at reduced risk of false-positive side effects.

For our patient, the amnestic qualities of his outbursts and his physical strength buffered him from his diagnosis. Even after our discussion, after his family had pulled out all the skeletons, he remained behind in the closet. In the article What It’s Like to Learn You’re Going to Die, the term “existential slap” denotes the moment when a dying person viscerally comprehends their upcoming demise. For some it comes at the time of diagnosis, others as their body begins to reflect symptoms of disease. For our gentleman, it would be several visits before his full realization of his clinical situation. So hearing the implicit message of his impending decline – of which he was cognitively aware but not yet emotionally prepared - was unwelcome. The tenor of the entire encounter was adversely affected by one unconsciously uttered word.

The balance between honesty and tact varies depending on the person, where they are in their illness trajectory, and the extent to which they have “processed” both the past and future course of their illness. Striking the right balance requires insight into the patient’s understanding of their illness and how they would like information to be presented. Palliative care opens conversations in which many people do not wish or expect to find themselves. Skillfully and sensitively dispensing the correct blend of hope and facts takes training, and occasionally trial and error. Sometimes, the only way to find out is to have a misstep – perhaps a misstep of a single word. Just remember: Slips happen. Some will be embarrassing; others inimical; some would even make Freud smile. These situations happen to everyone, in every discipline, at every experience level. So whether it is a misstep, misspeak, or mistake, remember to get back up and keep going. Your future patients will be grateful of how the experience helped you grow.

*Identifying details changed to protect patient privacy - Ed.

Ryan P. Nottingham, PharmD is a clinical pharmacist in Randallstown, MD. A recent transplant from Washington State, she enjoys exploring her new home with her husband and puppy and adding Old Bay to everything! Gregg VandeKieft, MD, MA is Medical Director for Palliative Care for Providence St. Joseph Health, Southwest Washington Region, and Associate Medical Director for the Providence Institute for Human Caring, Torrance, CA. He sometimes says things he wishes he could take back. You can find Gregg on Twitter at @vandekieftg

For more posts on communication, click here.

1. Barsky AJ. The Iatrogenic Potential of the Physician’s Words. JAMA. Published online October 31, 2017. doi:10.1001/jama.2017.16216
2. Dear J. What It’s Like to Know You’re Going to Die. The Atlantic. Published online November 2, 2017.

Wednesday, February 14, 2018 by Pallimed Editor ·

Sunday, February 4, 2018

Proposed Medicare Changes to Limit Opioid Prescribing

by Chad Kollas

On February 1, 2018, the Centers for Medicare & Medicaid Services (CMS) published its Advance Notice of Methodological Changes for Calendar Year 2019. Included in these proposed rules were several directives intended to reduce "Opioid Overutilization” (see p. 202), including formal adoption of the “90 morphine milligram equivalent (MME) threshold cited in the CDC Guideline, which was developed by experts as the level that prescribers should generally avoid reaching with their patients (p. 203).” CMS proposed “adding additional flags for high-risk beneficiaries who use ‘potentiator’ drugs (such as gabapentin and pregabalin) in combination with prescription opioids (see p. 204).” CMS also proposes a 7-day limit for initial fills of prescription opioids for the treatment of acute pain. The proposed CMS rules are unclear about exceptions for patients enrolled in hospice or with cancer pain, but there seems to be a mechanism in place for prescribers to apply for an exception for each individual patient (p. 209-210).

On learning of these proposed CMS rules via social media, many members of the hospice and palliative medicine (HPM) community expressed several profound concerns: Foremost, how would these changes impact our patients and their care? How will the rules affect our daily practice? And, for the HPM policy wonks, how did the 90 MME threshold make its way into proposed federal policy without evidence from the medical literature.

As one of the aforementioned HPM policy wonks, I’d like to address the last question first. The 90 MME threshold was born in 2012, as part of a non-solicited petition to the Food & Drug Administration (FDA) from a group of physicians who identified themselves as subject experts and referred to themselves as Physicians for Responsible Opioid Prescribing (PROP). Ultimately, after reviewing open comments from stakeholders, the FDA declined adoption of PROP’s 90 MME proposal.

Undeterred, PROP successfully sought to place the 90 MME provision in the CDC Guideline for Prescribing Opioids for Chronic Pain, leading to criticism of the CDC for a lack of transparency by the pain management community. Ultimately, the CDC did recognize that certain patient populations, including patients receiving hospice and/or palliative care, might legitimately require opioid doses exceeding the 90 MME limit. The current CMS proposed rules, however, do not offer an exemption to this limit for these patients; they would instead further codify an opioid dose limit that was largely created in an arbitrary fashion based on a self-selected group of physician “experts” with no accountability to the HPM community.

This observation likely concerns those of us who ask how – as HPM practitioners – the proposed CMS rules will affect our practice. Of much greater importance is how these proposed rules would affect our patients. Opioid stigma in the setting of “The Opioid Crisis” is already a major barrier to patients receiving hospice and/or palliative care that adversely impacts their access to medications needed to maintain their quality of life. For example, in a recent study of 250 patients receiving outpatient palliative care at a cancer center, 54% reported feeling stigmatized for their use of opioid analgesics and 73% reported difficulty filling opioid prescriptions (Kollas CD, Boyer-Kollas B. Assessing Opioid Stigma in Oncology Outpatients Receiving Palliative Care for Cancer-related Pain. Accepted to 2018 AAHPM Annual Assembly). The proposed CMS rules, in their current form, would add to patients’ perception of opioid stigma and, at best, will result in delays in receiving medications to manage their chronic pain. At worst, some would not receive the amount of medication needed to relieve their pain, severely impacting their quality of life or driving them to desperate measures, like seeking illegal drugs. Ironically, CMS new rules could unintentionally accelerate the emerging trend in opioid overdose deaths: deaths from illicit drugs, like heroin or illegal fentanyl (see CDC data here).

While this sounds catastrophically bad, there is a small silver lining within CMS’s announcement; there will be an open period for comments from stakeholders. CMS will review all comments submitted via its website, whether submitted by an individual patient or physician or from a patient advocacy group or medical organization. And, as evidenced by the FDA’s response to the 90 MME proposal from PROP, these comments can make shape policy in a way that protects our patients’ access to critically-needed pain medication. Social media can be a great tool to help build a successful coalition of HPM stakeholders, but time is short – comments must be submitted by Monday, March 5, 2018. To submit comments as an individual, go to and enter docket number “CMS-2017-0163” in the search field, then follow the instructions for “submitting a comment.”

Dr. Kollas has provided outpatient palliative care at Orlando Health UFHealth Cancer Center for over 17 years. He first wrote about his personal experiences with chronic illness and pain in a 1997 article in the “On Being a Patient” series in Annals of Internal Medicine. You can find him on Twitter at @ChadDKollas.

Editor's note - The graphic was updated to reflect 2019 changes not 2018 changes as was indicated in the original post. Also, the wording was changed from 'no exemptions' to 'possibly (but not guaranteed).'

Sunday, February 4, 2018 by Pallimed Editor ·

Saturday, February 3, 2018

An Impromptu Group Conversation With Women in Hospice and Palliative Medicine

Collectively written by Allison Jordan, Katie Harmoney, SarahScott Dietz, Jeanette Ross, Emily Hahn, Meredith MacMartin, Christian Sinclair, Rachel Thienprayoon

Waking up today February 3rd, I (Christian) saw a discussion on our Facebook private messages for the Pallimed page about what we should post for National Women Physician Day (which is held on February 3rd the birthday of Elizabeth Blackwell, the birthday of the first US woman physician.) Jeanette had found the 2016 Pallimed post written by Meredith MacMartin and we posted that, but then I thought it would be great to write some fresh content on this new celebration. So I jumped over to Twitter and reached out to a handful of female colleagues on a direct group message and asked my co-authors above:

My first thought was, “let’s use the reach of Pallimed and social media to amplify women’s voices on this commemorative day!” As soon as I sent the DM I realized, maybe this wasn’t the wonderful idea I initially thought.

Oh my gosh…
the horrible realization hit me…
I was asking women peers to do work…
on a weekend…
with no notice…
on a day focused on the challenges and accomplishments of being a woman in medicine…
challenges often from the results of a historical and current male-dominated workplace...
and I am a man.

Thankfully they didn’t point this out to me, but what followed was a really fantastic conversation that Katie noted: “We could publish this thread!” So we organized and streamlined some of the discussion would love to share some of our observations to broaden the conversation.

The Initial Ask

Sinclair: Sorry for the group DM, if some of you don't know each other. But I was wondering if any of you would be interested in writing a piece on National Women Physician Day for Pallimed. Meredith (@GraniteDoc) wrote one in 2016. We didn't have one in 2017, and this one just snuck up on me and I didn't think to get one drafted before this year's day. You can email me with a submission. Will get it published today or tomorrow if I get it today. And if you want to enjoy your weekend, not writing, that is perfectly acceptable! No pressure, honest.
Harmoney: I'd love to, but am actually volunteering at a cancer fundraiser.
Jordan: Is there a specific topic that you would like the writers to discuss? LOL otherwise I’ll just send you “being a woman in medicine is hard. We are still working in a system that was designed by men ages ago. Women need to be at the table to redesign the system so that it works for everyone.”
Dietz: May be able to, subject to the whim of a 16 day old. Right now I would probably rant in a sleep-deprived manner about parental leave. 😆 But yes, what Allison said, LOL.
Ross: Sarah, congratulations on the new baby! I was thinking something about women in #hpm but I don’t think I know all relevant info. Could go:
First hospice and palliative medicine (HPM) Physician: Dr. Cicely Saunders
First USA HPM Physician: Dr. Elizabeth Kubler-Ross?
Like first AAHPM woman president ....
Dietz: I would love to work on a post about women leadership in early HPM but I don't think it's going to come together this weekend. Next year's women's day?

On Mentors

Ross: Did you have a woman mentor play an important role in HPM for you. I would say that is why I’m grateful to mentors who help me think about how to balance life and work.
Jordan: Mentorship is HUGE.I could not have done this without male and female mentors
Dietz: I haven't had a female mentor. I can only imagine that would be a very helpful experience! Jordan: Sarah, I would strongly advocate for a mentor. And peer mentors too. Sometimes your girlfriends will be great cheerleaders to give you the courage to ask for what you need/want. I have different mentors for different reasons. I have a mentor for work/life balance. I have a mentor to help me with leadership skills, and I have a mentor to help connect me with people. I have the mentor for when I need a kick in the pants to push me to not settle.
Harmoney: Yeah. It's so important to pick mentors for each thing.
Jordan: LOL! I need a lot of help. It takes a village! But I can’t do this alone and there are women and men out there who have AMAZING knowledge.
Harmoney: My HPM mentor is a lady. She's very helpful and open about her own struggles. Helps that she’s late/mid-career.
Jordan: So the mentorship is great, but it still doesn’t fix systemic problems with the way our jobs are designed.
Harmoney: We need a fundamental culture change.
Jordan: I agree Katie. if we all work together and advocate for what we need, with the support of mentors, change can happen. We need people in leadership and positions of influence to help change the culture. Otherwise we will continue to have burnout, physician shortages, and people choosing to not go into HPM or medicine.
Harmoney: We have this in peds oncology too. So much pressure, jobs are super competitive, funding is scarce.

The Future of Medicine

Dietz: Baby woke up, reading back. (She’s amazing. I have two boys but today I’m really reflecting on what I want medicine to look like, if she decides to be a doctor like her parents. I really want to not have to worry that it’ll be different for her than it would be for her brothers.)
Jordan: I worry about my goddaughters and they see me and their mom in medicine... I want it to be different for them. Right now they don’t understand what we do (they are 2 and 4) but they clearly get we are not like other women in their lives.
Harmoney: Medicine also has a culture of us doing everything: patient care, research, grants, writing. It’s unsustainable.
Jordan: “Medicine is a very jealous lover. It will take as much time as you give it.”
Dietz: There’s an enormous pressure to be perfect or super-human in Medicine, because of the part where we have people’s lives in our hands. It makes it really hard to admit there’s a problem. Any problem, from “my car wouldn’t start this morning” to “I am so depressed I can’t get out of bed.”
Harmoney: Gifted physicians are being forced to choose family versus career because it's a system not designed to accommodate both.
Dietz: True for both male and female! The system is damaging for both genders but it exists in part because the structure is built on one parent at home full time to enable crazy work hours and expectations.
Harmoney: Agreed.
Jordan: There is talent literally walking away from medicine because of poor design. I bet burnout would decrease and we could retain talent if we had a part in the design.
Thienprayoon: My husband had a job gave him 6 weeks paid paternity leave. which was AWESOME. he felt guilty for taking it, since no one else does, because that is the culture of the company. Looking to the future, leave is not something he'll likely get again, which impacts us and our whole family SO much.
Dietz: My husband had to spend 2 weeks of sick/regular leave for his "paternity" leave, since FMLA would have been unpaid and we can't afford that. His group worked with him but it shouldn’t be this complicated. It's ridiculous. There is such a backlash for physicians in general against taking time for family, things as simple as looking for positions that don't require call, or even that do have call but on a predictable schedule instead of random assignments. Pumping at work, heaven forbid. I’m grateful my current workplace is supportive but I know many who are not as lucky.

Let’s Publish This!

Ross: I like this thread Esther Choo (@choo_ek) has going showing all the disparities in medicine.
Harmoney: We could publish this thread.
Dietz: Christian didn't know what a bag of worms he was opening in his DM. 😆
Jordan: LOL Christian got awfully quiet…
Ross: Christian, the post could be about how you tried to get HPM women to write a post and you got an earful about why we couldn’t.
Dietz: LOL
Sinclair: I just went to make lunch for my kids and came back to all this! I learned a lot and see a lot of some of the issues Kelly and I face together and as individuals. I like Katie and Jeanette’s idea.

The Hard Work of Hospice and Palliative Medicine

Jordan: There needs to be more flexibility. This job and especially Palliative Medicine is HARD. You can’t expect me to see a high number of consults, make people sad all day, and then get upset when I want to not take call on weekends and nights.
Harmoney: But the issue is that we are hard on each other. We’re part of the problem.
Jordan: We have to speak up and say NO to some of the foolishness.
Harmoney: And also support one another. We've got to advocate for our colleagues, male or female. It's really the only way to fix this. I do think that medicine has worn down my resilience. People in medicine need to advocate for our health.
Jordan: We need to not suffer in silence. Women physicians and especially us doing HPM should not work alone. We need each other!
Dietz: We do!!
Harmoney: We need to hold each other up!
Jordan: I’m thankful that during my med/psych training they paid for us to go to therapy.
Harmoney: I think of therapy as a requirement in medicine.
Jordan: I worried about my non-psych colleagues. They didn’t get help and their department would NOT cover therapy. Therapy should be part of the redesign of medicine.
Okay. We need:
1: women at the table for leadership
2: women included in the redesign of medicine
3: mentorship
4: no stigma with seeking mental health services
5: health systems that support people with families or who just want to have a life outside of the hospital
6. Support for those in academics to advance their careers and STAY in medicine
Dietz: Recognition that men suffer under the current system as well. (Toxic masculinity, anyone?)
Jordan: YAS Sarah!
Dietz: Just a second, I have a mac and cheese situation.😆
Sinclair: Sounds delicious!
Hahn: I want mac and cheese.
Harmoney: Me too!
Dietz: 3 yo NEEDS mac and cheese y'all. It's dire.
Harmoney: It's a serious need.

Women Leadership in Hospice and Palliative Medicine

Ross: I wonder if there any stats about how women are represented in HPM, like how many are in leadership positions like regional hospice medical directors, division chief, etc?
Jordan: Good question. How is the Academy (AAHPM) doing? How is HPM doing?
Ross: My gist is that we may be better than other specialties. HPM being founded by a woman and I think a good group of women started AAHPM. For example, Chest (the pulmonary society) just now has a woman president-elect. That doesn’t mean we still have room to grow.
Sinclair: I count 15 men and 12 women as Presidents of AAHPM since founding in 1989.
Jordan: Plenty of room to grow. I think women would be more inclined to take leadership positions if they knew they would have adequate support at work AND at home.
Sinclair: I recall being surprised in 2008 or 2009 a session at the Annual Assembly of HPM focused on “Women and Leadership in HPM.” My career had essentially been working only with women physicians as colleagues and supervisors. I was wishing for more male physicians honestly. Only recently did I realize what the need for that session was. Currently, our HPM physician group is 3 men, 8 women led by a woman.
Ross: In my department, we are like 8 women to 2 men HPM specialists.
Harmoney: HPM seems much more balanced than oncology. HPM is a field where we have this discussion.
Jordan: True Katie. We actually have a better shot at changing the culture. Because we are new, we have a unique opportunity to negotiate and define our role as we become part of the fabric of healthcare. We might be a beacon of hope that can become a model for other outdated specialties.
Harmoney: I was floored during interviews because I was asked about self-care.
Jordan: The other specialties may look to HPM to figure out how to do self-care right. So we have to get it right and set the tone. And with a woman at the lead, it can happen. It could happen with a guy too, don’t get me wrong.
Harmoney: The right guy.

Future Collaboration

Ross: I see an AAHPM 2019 submission in our future.
Dietz: Love it!
Harmoney: As a group? I’m down. I'm interested to see what this looks like.
Jordan: It’s going to be epic
Hahn: Oh my just read through this whole thing! It really could just be published!

You can find all of the authors on Twitter: Allison Jordan (@doctorjordan) , Katie Harmoney, SarahScott Dietz (@SDiezMD), Jeanette Ross (@RossJeanette), Emily Hahn (@TexasKidDoc), Meredith MacMartin (@GraniteDoc), Christian Sinclair (@ctsinclair), Rachel Thienprayoon (@RThienprayoon). They often tweet about #hpm.

Saturday, February 3, 2018 by Christian Sinclair ·

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