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.)

Fatigue/Nutrition
Communication
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.

Thanks!

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 TheLizArmy.com 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

General
* 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.

Location
* 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.

Networking
* 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

General
* 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.

Location
* 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.

Education
* 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

General
* 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!

Education
* 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.

Networking
* 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 www.pallimed.org 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 Pallimed.org

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 ·

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