Monday, January 15, 2018

Top 10 Pallimed Posts of 2017

by Christian Sinclair (@ctsinclair)

Looking back at 2017, we didn't publish a ton of posts (only 50!*), but we had some that clearly resonated with people and continue to be popular since we keep seeing them show up on social media. Working closely with her, I already knew the great qualities Lizzy Miles brings to Pallimed as a writer and an editor, but looking at the top 10, her experience as a hospice social worker has led to a knack for insightful and practical posts. Her posts also seem to be meaningful to clinicians in multiple settings in addition to patients and families. So here are the top 10 posts of 2017 based on page views:

#10 - Extremis Documentary Falls Short at Oscars, Wins Over Palliative Care by Christian Sinclair

#9 - 14 Ways Hospice Patients Have Said They're Ready to Die by Lizzy Miles

#8 - LGBTQ at the End-of-Life: Needs and Challenges by Vivian Lam

#7 - Lorazepam, Haloperidol and Delirium by Drew Rosielle

#6 - "Going Palliative is Not a Thing by Staci Mandrola

#5 - Facing the Abyss: Planning for Death by Kevin Dieter

#4 - The Emotions of Dying by Lizzy Miles

#3 - Changing Treatment Options in Delirium - No More Antipsychotics? by Drew Rosielle

#2 - Defining Dignity at End of Life: One Question to Ask Hospice Patients by Lizzy Miles

#1 - The Dying Don't Need Your Permission to Let Go by Lizzy Miles

Two important notes of appreciation. One for Lizzy Miles and Vivian Lam who were the key editors in 2017 to help get posts ready for publication. And a big thank you to the 23 writers who contributed to Pallimed in 2017- Lizzy Miles, Drew Rosielle, Kevin Dieter, Vickie Leff, Vivian Lam, Erica Frechman, Paul Moon, Lori Ruder, Arif Kamal, Megan Mooney, Ishwaria Subbiah, Lyle Fettig, Amanda Hinrichs, April Krutka, Jennifer Wilhoit, Paul Carr, Staci MandrolaAbagail Latimer, Karen Kaplan, Shayna Rich, Meredith MacMartin, Renee Berry and Rick Strang.  Without you, this site would have a much less diverse voice.

If you want to be part of the team in 2018, we are always looking for palliative care and hospice clinicians and advocates who have a passion for the field. We have all sorts of needs and would love to add you to our current team of 17 volunteers. Check out this post to learn more.

Christian Sinclair, MD, FAAHPM is the Editor-In-Chief for Pallimed and a palliative care physician at the University of Kansas Cancer Center. You can find him on Twitter (@ctsinclair).

*for comparison, Pallimed published 297 posts in 2009 (includes the Arts and Cases blogs)!

Monday, January 15, 2018 by Christian Sinclair ·

Monday, January 8, 2018

Looking Ahead to 2018 for Palliative Care and Hospice

by Christian Sinclair

In 2016, I made a list of upcoming events in palliative care and hospice. For some reason, it fell off my list of to-do's in 2017, but I wanted to bring it back because it is good to see all the important things happening in our field. Here are some of the things to put on your calendar right now, so you do not miss them! If you want to help out with maintaining this, it would be great to have a colleague and it doesn't take that long, please email me (below). We could even go crazy with the Google Calendar and make different ones that are relevant to different disciplines/interests, international and add submission deadlines for conferences. Technology makes this simple, I just need a few more hands.

To access these dates via Google Calendar (HTML), click here. (still adding some of the below over the next few days)

Winter (Jan, Feb)



Spring (Mar, April, May)



Summer (June, July, Aug, Sep)



Fall (Oct, Nov, Dec)



Recurring

#hpm chat (Twitter) - Last Wednesday night of the month 9p ET - Subscribe to monthly updates on topics at www.hpmchat.org

If you know of any other major events, please add them in the comments below and we may add them to this growing list.

If you would like to help maintain this list and the Google Calendar, it is pretty easy if you have a Gmail address, and can be taught in less than 30 minutes, please email editor - at- pallimed.org.

If you are interested in writing up a report for a major conference listed above, we are always looking for traveling correspondents. Please read this overview of writing conference reports and submit the form on that page.
Christian Sinclair, MD, FAAHPM is the editor-in-chief of Pallimed, and always loves a good conference.

Monday, January 8, 2018 by Christian Sinclair ·

Sunday, January 7, 2018

Blue Ribbon Patients: A Tool to Protect from Unnecessary Transitions

by Rick Strang (@rickstrang)

Bed pressures in busy hospitals often means that less acute patients are moved to different wards in order to make space for patients admitted from the emergency department. We are often faced with some difficult decisions in our current NHS. End of Life (EoL) patients seem particularly at risk of being moved, which can be very distressing for families, friends, the patient and the care teams. It is also quite common for these moves to occur into the night or at weekends. These periods are covered by site managers, bed managers, and on-call clinicians rather than the usual ward teams and therefore their knowledge of the patients can be very limited. Indeed, they will often require sitting down and reading through the notes before making decisions. This is where we thought we may be able to have an impact by flagging clearly those patients whom we should not move. The Blue Ribbon Patient sticker idea came out of that.

The scheme is not exclusive to EoL patients, although it predominantly affects them and was started particularly for them. For example, we had an elderly man who had been profoundly deaf since childhood with several other very complex needs on one of the wards. As he became better he was likely to get moved. However, some of the staff had learned to sign and he had built up an important trusting relationship. Moving him and starting again wasn’t going to be helpful so he was made a Blue Ribbon patient.

It is vitally important that “Blue Ribbon” doesn’t become a label for “going to die”. It just means, for a whole host of reasons, that this patient should not be moved. It’s also very important not to overuse the scheme. Patients must be carefully considered and nominated by a senior nurse or nurse specialist.
Blue Ribbon patients are notified to the Site Manager who keeps a “Blue Ribbon List” with her notes.

Blue Ribbon patients are noted and discussed at Bed Meetings, reminding folks that they are not to be moved.

A key element of the scheme is to ensure that there is VERY senior input into a decision to move the patient. This makes sure we really, really are in last resort territory before a move is made. If there is a requirement to move a Blue Ribbon patient for a non-clinical reason this must be agreed by the Head of Nursing or by the on-call Director if it is out of hours. Either the Head of Nursing or the on-call Director must then contact the family to explain the reasons for the move and apologise. We’ve deliberately made it a very senior responsibility as we view moving these patients as a very important decision if it has to happen.

All Blue Ribbon patients have the requisite sticker placed on the front of their notes and any care planning documentation. In this way, even clinicians unfamiliar with the patient are reminded that there are extenuating circumstances around this person that means that moving them to another ward is unlikely to be in their best interests.

The Blue Ribbon Patient scheme is integral to our Transfer of the Dying Patient policy.

Prompted by two quite difficult episodes involving the movement of dying patients we implemented this scheme rapidly; a two-hour discussion with key teams and stickers back from the printers within 24 hours. That was six weeks ago. Since then not a single EoL patient has been moved despite ongoing bed pressures. We have stopped all non-clinical transfers for dying patients thanks to this scheme. It’s been quite a revelation and folks have really taken to it. It’s not complex or expensive to implement. It seems that sometimes simple just works!

Rick Strang RN is Emergency Care Improvement Lead at Isle of Wight NHS Trust in England. When not involved in all types of emergency care Rick is usually finding innovative ways to avoid household chores.

Sunday, January 7, 2018 by Pallimed Editor ·

Friday, January 5, 2018

Diary of a New Hospice Volunteer

by Lizzy Miles

I had forgotten that I had written about my first few days as a hospice volunteer. I just discovered it while I was looking through some old electronic files. Now, ten years later, with more education and a career in hospice, I still notice that some things never change. You would think that I would be more certain about things, but I don't think I am. However, I believe that uncertainty is a necessary part of the job. I've written about how we don't know death. When we are uncertain, that means we are evaluating our behavior and how it's perceived by others. I now believe it's good to be a little bit nervous because it means you care about how you come across.

When I became a volunteer manager, I remembered my uncertainties and wrote about how to address them in a FAQ for volunteers.

This diary is unedited. I display for you my vulnerability full-force. The only editing was of the identifying information.
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Day 1 of my hospice volunteer experience:  Monday, June 11, 2007

Before I went on the visit I ran through so many scenarios in my head. What would I say? What would we talk about?  I thought about it all day with a mixture of dread and anticipation. I am not ready for this. I need to do this.

When I got to the facility, there was a large open area where lots of patients were in a big circle playing bingo. I worried that my patient that I was to be visiting was there and what was I supposed to do. She wasn’t… she was in her room… room 205. The receptionist told me that Annie would like the company.

The door to Annie’s room was propped open with a trash can.  I knocked softly and walked in and at first I didn’t see her and thought she wasn’t there. Then I saw her. She was a tiny little thing laying in the bed with no covers. The television was on, blaring the evening news. Annie was sleeping. I wasn’t sure what I was supposed to do next. Would she wake up startled that a stranger was in her room?

I saw a footstool at the end of the bed and sat on it. Then I realized if she opened her eyes I would be right there staring at her and it might be uncomfortable for both of us. So I moved the footstool to the side of her bed. No that’s too close. I scooted it back so I was within her line of sight but more through peripheral vision. She was moving her hands and tugging on her air tube and mumbling stuff. I couldn’t hear her over the television.

Finally, she opened her eyes and looked at me. I said, “Hi Annie, I’m Elizabeth, a volunteer with hospice.” She then asked me, “Are you here for communion?”  I thought she was asking if I was here to get communion and I said no.

Then she said, “Are you here to give me communion?”

I said no, I was a volunteer. Then she told me that she needed communion. Several times. “I want Coly Communion.  I WANT Holy Communion.  I want to be absolved of my sins.” I was not sure what to do.

I asked, “Do you want me to see if I can find someone to give you communion?”

She said, “Do you think I can go out like this?  Of course not.  How am I going to get communion?”  She was quite distressed.

Thinking that somehow through a streak of bad luck I got a patient who was dying immediately and that I needed to go and find a priest right then, I told Annie I would go see what I could do.  She seemed relieved.

I walked out to the nurse’s station and I had to take a second to compose myself.  “Annie is asking for communion?”  The nurse smiled and nodded and said that Annie had communion that morning.
“And that’s good enough?  I don’t know… I’m not Catholic.”
“Yes – she probably just forgot.”
I went back into Annie’s room and told her.  “Annie!  You got communion this morning!”  She smiled.  “I did?  Oh thank God. I forgot. My memory is not so good.”

Annie’s daughter Karen came in about 15 minutes later and I introduced myself.  She was maybe in her late forties or mid fifties with curly brown hair.  She looked tired.  I wasn’t sure whether to stay or go, so I kind of backed up and leaned against the wall.

When Karen started talking to her mother, I saw an immediate change in Annie.  Her daughter was asking her how she felt and how much she ate and Annie point-blank said, “I don’t feel like talking. You can talk but don’t expect me to answer.” Karen looked at me. I saw the pain and the worry in her eyes.  I felt like I was intruding on a private moment so I said a quick goodbye and left.

As a volunteer we are not to judge or conclude. We are not to comment. You can’t help but think about the situation. The distance, without the pain and grieving, gave me perspective.  From my brief interaction with Annie and her daughter I concluded the daughter wasn’t ready. When I was there, Annie talked a lot. About the deeper things. She doesn’t have time for small talk. She doesn’t care about the food that she had. She just wanted to die and she was worried about it.  Karen, still talking about daily life is in a different place than her mother. She’s not ready for her mother to go. I hope that my presence in visiting Annie will help her talk about what she can’t say with her daughter. My fear is that I don’t know how to respond, but I don’t think that’s as important as allowing Annie to express herself.

Day 2: Wednesday June 13, 2007

Wow.  I just returned from my second visit with Annie.  It was quite a different experience. I should have known the days would be different but I forgot. This time the door was closed. Not sure what I should do, I asked the nurse who told me that I should knock, but that she wouldn’t hear it and then to go right in.

Well this time Annie was sitting on the bed fully clothed. She had her head down and didn’t notice me right away. When she did see me, I think I startled her and she scolded me several times.

She had forgotten who I was but seemed glad to see me. She asked if we could move over to the chair to visit. She said she forgets stuff often and mentioned it would be nice to have a notebook to write things down. I saw a notebook next to her chair and we got it out and it was FILLED was scrawled writing – rants almost. Then we saw another notebook and the top page had “Stop Talking on Paper” written on the top of it.

She asked my name and talked about privacy and how it was important not to use names and not to talk to people. She said I could talk about her if it helped other people but not to use names.

She asked for my first and last name and wrote it down. Then
she asked for the date and wrote that down. Then she asked whom I was with and I said I was a volunteer with hospice and she wrote that down. Then it started to get really weird.

She asked me if we had just met and I said yes and she asked me my name. Then she asked me the date. Then she asked me whom I was with and I said I was a volunteer with hospice. We continued the same conversation for an hour and a half. Every time I said my name she smiled and said it was her name too.

Interspersed in were a few stories that she repeated about being 19 in Cincinnati and having a friend whom she walked home with and somehow she was attacked and hit on the head.

About 8:00 Annie’s daughter Barbara called and I could hear how tired she was. Annie asked me to introduce myself and I did and Barbara thanked me for visiting her mother. She said it was hard to visit after work and I told her I knew. I had been there before.

Annie talked a lot about privacy and secrets. She mentioned her fear of being alone and she worried about people knowing that she didn’t have a memory. She told me that I didn’t have to worry about what I told her because she wouldn’t remember it anyways. Then she told me not to bother telling her anything because she wouldn’t remember it anyways.

When I said goodbye, she asked when I was coming back. I was undecided and afraid to commit.  I said Saturday once and Sunday once but I avoided writing anything on paper. She told me that she was really happy to have me come visit and wanted to give me something. I told her I didn’t need anything. She worried about me getting home and I reassured her that I would get home before dark. She asked if I would call. I told her I couldn’t.

I intended to stay half an hour, I ended up staying an hour and a half. When I got home I found that the Volunteer coordinator had sent me four more patients. I felt drained.  How can I possibly…?

Day 3: Monday June 18, 2007

I negotiated with the hospice volunteer coordinator to only take on one additional patient right now. Tonight was my first night visiting both patients. I had wanted to go on the weekend but I haven’t been feeling great lately and I was really tired for some reason.

I visited Annie first tonight. This time I made sure I knocked loudly. She smiled and invited me in as if she knew me. She knew I was a friendly face but when I asked her if she remembered me, she said no. She seemed mentally more alert but physically more declined. She had some kind of massage pad on her chair and a pad under her butt in case she didn’t make it to the bathroom. We prayed together some. She said we were going to pray for 15 minutes and I got a little nervous because I don’t have 15 minutes worth of prayers but it ended up only being like two minutes. We said the Lord’s prayer together and there were parts where I had to let her lead because I forgot what came next. It’s been a while… Mostly when we were supposed to be praying silently, I would repeat the same thought over and over in my head. Please lord, accept Annie into your kingdom. I thought at the end of the evening that it might be nice for me to look up some actual prayers as I felt that mine were somewhat inadequate.

Annie told me she loved me several times and I know that she was grateful for the company. I guess she has a reputation among the staff as being quite needy so I’m glad that I help in some way. It’s hard to leave her though, but I had promised to visit the other patient.
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Expecting the other patient to be just like Annie I was surprised to find out that she was in the ‘memory’ ward. You know, the one that requires a code to get in…  I walked in and there was a circle of patients, some sitting, some standing… listening to oldies. I’m not sure who was singing. I walked up to the nurses desk and stood there for several minutes and they finally acknowledged me and said that the nurses were getting Martha ready for bed and that I could wait with the circle. I waited about 10 minutes.

When I first met Martha I was pretty surprised. She was so very pale and fragile and you could barely distinguish her from the sheets. She looked at me but I could tell she couldn’t move her head well and I didn’t know whether to stand or sit and I ended up switching back and forth between standing and sitting. It never occurred to me to plan what to say and after I introduced myself I was at a loss for words. What do you say?

I ended up commenting on her quilt which commemorated a 50 year marriage as of 1999.  There were pictures of them young and older, but even the older picture didn’t look like the frail woman in front of me. It wasn’t long before Martha closed her eyes and went to sleep so I sat there about 20 minutes and tried to pray again and I am a little embarrassed to say, I watched the clock. I vowed to myself to look up some Catholic prayers so I would know what to say.

Whoever thought it would be so hard to talk to God?
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Annie ended up living for several years after her hospice admission. She was discharged and readmitted. She had a big influence on me deciding to switch careers and return to school to become a hospice social worker. I wrote about her in my book of hospice stories. I had to stop volunteering with her because it was a conflict of interest.

Fortunately, her daughter emailed me when Annie was dying and I sat with her. Shortly before Annie died, I wrote in her notebook, "God loves you Annie." She read it and looked up at me and said, "God loves you too, Elizabeth."  My jaw dropped. She said, "That IS your name, isn't it?" With tears in my eyes, I nodded yes. When Annie became unresponsive, I sat with her and put a cold compress on her forehead to cool her fever. I didn't have a rosary, so I used pieces of paper to count out my prayers. After several years with Annie, I had the rosary prayers down pat.

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.

Photos via Unsplash



Friday, January 5, 2018 by Lizzy Miles ·

Monday, January 1, 2018

Palliative Care Resolutions for 2018

by Christian Sinclair (@ctsinclair)

Happy New Year! As we look towards the future that is now 2018, many of us make promises which can be difficult to keep, but always with the purpose of working towards the best version of ourselves. (In a way it is kind of like a quality improvement project!) Often these resolutions are personal: exercise 5 times a week, eat more healthy, learn a new language, read more books, spend less time on my phone. Sometimes these resolutions reside in our professional spheres of influence. I thought it would be interesting to see what some hospice and palliative care colleagues are resolving to do in 2018. If you have a resolution of your own, please post in in the comments, or share on Twitter with #hpmResolutions. If you don't want to make it so public you can always talk to the people you work with every day and see what they are committing to this year within hospice and palliative care.

I want end-of-life care conversations to be everyday conversations! So I'm going to try to take those conversations outside the hospital and to the community by speaking at local organizations. - Elizabeth Gundersen, former PCP and hospitalist turned palliative care doctor (@Top_Gundersen)

I am hoping to expand my cultural horizons as I walk the path of chronic illness and death with children and their families. I want to be more mindful of how my actions can fit into their culture as opposed to invade it. - Katie Harmoney, pediatrician, pediatric hem-onc fellow and future pediatric palliative care fellow (@katie_harmoney)

My 2018 resolution is to increase my gratitude to the life and career I have been given through being more focused in the present moment- the future is not guaranteed which my palliative care & hospice patients teach me! - David Bruxton (@DavidBruxtonMD), Palliative Care Physician, Adult and Child Psychiatrist

My 2018 HPM resolution is to wait one beat longer before offering an opinion. “Let me not seek as much to be understood as to understand.”—Prayer of St. Francis. - Joe Rotella (@JRotellaAAHPM), AAHPM Chief Medical Officer

Continue to love and give compassion to ourselves, our patients, their families/caregivers, and colleagues. We are all in this together. - Rab Razzak, (@RabRazzak), Palliative Care doctor at Johns Hopkins

My palliative care resolution for 2018 is to hunker down and really figure out the role of the "patient as researcher" in palliative care. In the spring of 2017, I applied to PCORI for funding on a project called the Brain Cancer Quality of Life Collaborative, which is all about palliative care. I was excited and terrified when I was approved for the funding in the fall of 2017. I am not a clinician, I am not a researcher, and I am not an academic. I am a patient. I know how to bring together the neuro-oncology and palliative care communities, and I know many patients and care partners who are passionate about doing something to improve quality life and palliative care for people living with brain cancer and their families. In 2018, I will fight my imposter syndrome, and I will rock this project. Families dealing with brain cancer (or any serious illness) want to spend time building memories, not navigating the healthcare system. - Liz Salmi (@TheLizArmy), Co-founder of #btsm (Brain Tumor Social Media chat), Communications for My Open Notes

Excited to be working with over 50 external organizations to make new #NCPguidelines a reality and work to implement in all settings. - Amy Melnick (@AmyMelnick1), Executive Director, National Coalition for Hospice and Palliative Care

Learn more about screening for risk of opioid abuse when initiating opioids for pain in the hospital and start doing it! Also, try using dictation for my notes to speed completion and reduce the time spent on documentation. - Meredith MacMartin (@GraniteDoc), palliative care doctor at Dartmouth-Hitchcock health system and Geisel  School of Medicine.

For me engaging with the academic networks to get the algorithms working to identify people better than by surprise question or the like and chatting more to the ED lot. - Ollie Minton (@drol007), Palliative care physician and researcher

My 2018 hospice and palliative medicine/care resolution is to read more journal articles AND then actually post a write-up of them in the spirit of what Pallimed was when Drew first started it. There is a lot of important research being done and it needs to be discussed more! - Christian Sinclair (@ctsinclair)

Some other thoughts on palliative care and hospice resolutions you might want to commit to:
- Contact your local, state and federal legislators for the first time ever (you can talk about the importance of hospice, palliative care, pending legislation about quality of life, etc)
- Read an entire hospice or palliative care textbook
- Submit a conference proposal
- Submit a letter to the editor (local newspaper, NYT, WaPo, medical journals)
- Start a Quality Improvement project around palliative care
- Participate in your first #hpm chat on Twitter (now monthly- subscribe for updates)
- Donate part of your coffee money monthly to a local, state, national or international organization supporting hospice and palliative care
- Mentor, coach or sponsor someone in hospice and palliative care to achieve more
- Write notes of appreciation instead of gifts for your peers and colleagues for holidays and birthdays
- Record a lecture video on a topic you know well and post it online (SlideShare, YouTube, etc)
- Write a post for Pallimed, GeriPal, or Palliverse
- Start your own blog, video channel, or other social media channel dedicated to palliative care knowledge

Feel free to add your own ideas below!

Christian Sinclair (@ctsinclair) is a palliative care doctor at the University of Kansas Health System, and resolution-making and resolution-breaking human being who strives to be better, but doesn't always get to where he wants to be.

Monday, January 1, 2018 by Christian Sinclair ·

Wednesday, December 27, 2017

Moving Palliative Care Upstream - Can we ever be TOO early?

By Christian Sinclair (@ctsinclair)


The growth of palliative care in the community and outpatient settings has been one of the more popular stories in our field in the past few years. No longer is palliative care only available to serve in the intensive care units, but the demand for person-centered, family-oriented, symptom-based care with an emphasis on communication and decision-making is being heard in the earlier stages of illness. Serving patients and families in clinics and in their home is unleashing the true potential of palliative care. Even in my own work leading our outpatient efforts in an academic cancer center, we are very excited about our upstream involvement setting the stage for the 2016 ASCO Clinical Practice Guidelines on implementing palliative care into oncology practices. I have seen the positive impact of being involved early and it gets me excited to hear from my peers across the country doing the same thing.

But we have learned in the delivery of palliative care, to be wary of the overpromise of new medications and new technologies. We see the patient impact due to the hype around a new treatment lead to a widening of “eligible” patients which is often followed by a lack of impact compared to original trials. We hear the stories of medical bankruptcy because of expensive new treatments that never panned out for patients. And knowing this I have begun to worry about the Goldilocks principle as applied to palliative care; not too late while also being not too early. Unfortunately, not all the research is helping us define the right time to initiate palliative care, which is a crucial question because we still do not have the workforce to be undisciplined in what populations are served.

The Danish Palliative Care Trial (DanPaCT), published in Palliative Medicine this May by Groenvold et al, is just the kind of study which may help us begin to focus our efforts on this important question of timing. It is the first major European trial of SPC compared to all the other studies which have been based on North America. DanPaCT researchers looked at early referral to a specialist palliative care (SPC) team versus standard care. I came across this study because it was covered in the December Hospice and Palliative Medicine Journal Club (#hpmJC, @hpmJC on Twitter). The study population involved nearly 300 people with stage IV (metastatic) cancer at 5 Danish oncology centers. The SPC intervention took place over eight weeks and included in-person and telephone visits. The outcome studied was the change the single most distressing need for a patient using the EORTC QLQ-C30. And the results showed that early specialist palliative care made no difference in the most distressing issue. That is not heartening.

(Sidebar - Patient Selection - They looked at 1146 patients with metastatic cancer and after completing a palliative care screen (showing multiple high scores on EORTC QLQ-C30), they found 464 (40%) patients that they thought would benefit from SPC. That is a helpful metric to emphasize not everyone with metastatic cancer may have needs to be met by your palliative care team. Also, 30 of the 297 patients died during the eight-week study period, which is a pretty high mortality if this was designed to be a trial of EARLY palliative care.)

The study was well-designed and the publication is a must-read for anyone looking to make a case for upstream palliative care. I expect it will be featured in the state of the science at The Annual Assembly of Hospice and Palliative Care in 2018 even though it is a negative study There are some caveats to be made before you change course and tell your Stem Cell Transplant Team that you can’t see the patient BEFORE they get their transplant because you won’t make a difference.

The researchers looked at primary need, which was based on patient-reported outcomes (Good!) but picked because it was the highest score on the severity scale, not because the patient said it was the most important thing (Bad.) We all can imagine a patient who rates their anxiety a 7 and their pain a 5, but states that they would really be less anxious if they felt some control over their pain, so they feel pain control is the most important issue. Also picking one issue is a narrow view of the whole-person approach that defines palliative care, but to be fair when they looked at the improvement in other areas in the secondary outcomes analysis, there really was no major impact by SPC either. While not the focus of this first major DanPaCT publication, I hope to see other key areas of impact published like health care utilization (days at home, hospitalizations, ER visits, cost of care) and patient satisfaction with care.

It was not clear what professional disciplines were involved in delivering SPC, which is one of the most important factors in helping other clinicians decide how they can design their palliative care program. Many of the studies featured in the ASCO CPG were quite explicit in how their palliative care intervention was delivered, which helps program leaders decide what staff they need to hire.
So this gets me back to the Goldilocks Principle. If we are going to properly balance our small but growing palliative care workforce and meet the needs of patients who would benefit most from our interventions, is there a problem with being involved with being too far upstream? We all know the problems involved with being called too late, now we might start developing a vocabulary around the challenge of being called too early.

We will be talking about this Wednesday, December 27th at 6p PT/9p ET on Twitter at #hpm chat. We hope you will join us!

Additional Info:

Christian Sinclair, MD, FAAHPM, is an assistant professor at the University of Kansas Health System, editor-in-chief of Pallimed, and immediate past-president of the American Academy of Hospice and Palliative Medicine. You can find him on Twitter at @ctsinclair. 


Wednesday, December 27, 2017 by Christian Sinclair ·

Monday, December 18, 2017

Natural Disaster Planning for At-Risk Hospice Patients

by Shayna Rich

This year, our hospice went through Hurricane Irma, and although its destruction was limited in Florida, our preparation was based on predictions for major damage. In northern Florida, that means substantial flooding and wind damage destroying the electrical grid. Other parts of the country have different safety concerns (fires, tornados, snowstorms) but the solution may be the same—moving patients from out of their homes and into facilities. This article is the first in a series about our hospice’s response to the storm emergency.

We triaged patients to maintain their safety, based on their risk of flooding at home and the risk of electricity loss (especially for patients who relied on high oxygen flows). We moved high risk patients to care centers with low flood risks and back-up electrical generators. This included moving at-risk patients out of hospice care centers, assisted living, nursing homes, or their homes.

At my care center, we took 16 single-occupancy rooms, and set it up for 30 patients and their families (double-occupancy for all but 2 rooms). Space was cramped, limiting privacy and comfort. Rooms were set up with portable hospital beds and sheet curtains as dividers. To maximize safety and comfort, we organized patients based on the criteria below.

General Criteria for Rooming (Determined most room assignments)

Gender: The initial criterion was the most straightforward. We assumed that rooms should be single-gender for patient comfort. This assumption was the strongest limit to our ability to accept patients, as we ended up with a (predictable) predominance of women. This necessitated rearranging rooms on an ongoing basis, to maximize occupancy.

Oxygen needs: Most respite patients came to the care center for concerns of oxygen availability (high-flow oxygen needs and high risk of power loss), so this was a critical consideration. Our rooms were designed as single occupancy, and each had a single oxygen outlet. We obtained a few oxygen concentrators, but they required available hardened electrical outlets to continue to work after power loss. We spread our oxygen-dependent patients across rooms to limit the need for concentrators.

Acuity: Single rooms were reserved for patients who were admitted for General Inpatient Care (GIC) level of care, especially those with agitation, delirium, or other difficult-to-manage symptoms. Patients with high acuity and those with fall risk were roomed closer to the nursing station, for more frequent monitoring and easier access to medications. This was particularly critical given the high total workload for nurses and CNAs.

Prognosis: We roomed patients with similar prognosis and activity level together. In most cases, this meant rooming patients who were actively dying together or keeping them in single occupancy rooms. This also ensured that patients who were alert and liked to interact and talk to their roommate had someone available who could respond. They could also watch TV or talk without worrying about overstimulating a dying patient. Importantly, we attempted to avoid patients having to watch a roommate die a few feet away.

Any attempt to predict prognosis is imperfect, especially in the setting of increased stress levels due to evacuation and concern for family safety. It was inevitable that a few patients declined and died faster than expected. The body was removed from the room as quickly as possible.

Established patients: We avoided moving patients who were already settled in a room, and tried to allow these patients to remain single-occupancy. This consideration often overlapped with acuity and prognosis, as existing patients had been admitted for management of symptoms or terminal care. Expectations had been set at the time of admission, and it was easier to avoid the inconvenience and extra logistics of moving patients and beds when possible.

Additional Criteria to Consider (Affect 1-2 patients each)

Infection risk: As with most hospice care centers, we have a small number of infection control rooms. These rooms are much smaller than our other rooms due to the attached alcove for gowning, so they were only practical as single-occupancy rooms. These were reserved for patients at high risk of infection (e.g., patients with cystic fibrosis or those with tracheostomy). We did not have any patients with active infection during the storm, but they would also have been appropriate for quarantine in these rooms.

Temperature and air flow: One reason to room oxygen-dependent patients together was temperature and air control—COPD patients usually prefer a cool room with high air flow. Throughout the building, we turned down the thermostats to cool the building in anticipation of loss of power and air conditioning (which is not on generator backup), but it is best to match environmental preferences. For one patient, this was untenable, as he preferred a temperature in the 80s Fahrenheit. Unfortunately, we initially roomed him with a patient who preferred a temperature in the 60s. We separated them the following day, but it made for a highly disturbed night.

Other electrical needs: Although most hardened electrical outlets were used for oxygen concentrators, it was important to consider whether patients need electrical appliances to manage their symptoms. This came into play with need to power beds (especially low air loss mattresses, which may flatten and become hard if they lose power) and fans.

Family: We opened our care center as a shelter for family to ride out the storm with their loved one. Of course, the number of pull-out chairs and cots in the building were limited. We brought in extra cots, but most were outside of patient rooms. Some families were so large and boisterous that they strained our rooms even as single-occupancy. We considered both the number of family members and their boisterous or argumentative nature when determining who should be roomed together or given a single-occupancy room.

Psychological concerns and stress: A few of our patients had active psychological diagnoses and most of them had a high stress level, even before the storm. For example, one of our respite patients had severe OCD and did not want to leave home, so he found it hard to have a roommate. Some of our other patients had a much harder time with storm-related anxiety and uncertainty about their family and homes. Rooming as double-occupancy was stressful to all, and psychological concerns could not trump safety-based concerns. But where possible, it was helpful to consider personality match and stress levels, splitting up anxious patients.

This list of criteria is not comprehensive and flexibility is the best guide for managing patients in an emergency. We had several patients evacuated from a nursing home in the middle of the storm unexpectedly, and deaths or changes in acuity necessitated moving patients. As described above, sometimes patients had to be moved to accommodate symptom management or patient preferences, but these criteria provide some basic ideas for arranging this complicated puzzle.

Shayna Rich, MD, PhD, is an associate medical director for Haven Hospice in Lake City, Florida. She is glad to help others think through emergency planning, and she is glad that this year’s hurricane season is over.


Monday, December 18, 2017 by Pallimed Editor ·

Friday, December 15, 2017

Pallimed Roundup: #Endwell17 Attendees and Speakers Reflect on Personal Meaning of Ending Well

Curated by Lizzy Miles

Last week, I attended the End Well Symposium in San Francisco. (You could read my review here). Collectively, we were examining how we can improve the end of life experience for all. It occurred to me as we talked about individual desire and diversity that the attendees might have unique expectations and hopes for their own personal ending. So I asked around. You'll note some trends, but also some very unique answers.

What would it mean for you personally to “end well?”

“Being present to the experience. I don’t want to control it, I just want to know.”
-Karen Van Dyke
Senior Care by Design

“To experience the process of dying and to be aware for as long as I can without pain.”
-Heidi Burbage
San Francisco Health Network

“I feel complete in my life. I’m just starting to do my work. I would love to have what my mom had – a Living Wake. Be surrounded by loved ones at Zen Hospice. Have the song We are the World or something by Barry Manilow playing.”
-Laura Sweet
The Cancer Journey

“I am going to be buried in a green burial ground with a mushroom suit and three days vigil prior to the burial.”
Michele Little
Beautifuldying.com

“Having made all my relationships healthy and felt like I gave back to the world as much as I took from it. I would want to be in the company of the people I know and love and not in institutional setting being cared for by strangers.  I would love to hear the sound of wind and trees."
-Jennifer Brokaw, MD
Patient advocate, writer, speaker

“A conscious death with close family. Preferably when I’m over 65, even better with adult grandchildren.”
-Jethro Heiko
Co-founder of Common Practice

“A car accident where I’m pulverized.”
Sandra Price
Estate Planning Attorney
[editor’s note – yes, she understood the question!]


“I’m outside. It’s a sunny day but not hot. My entire family is there having a barbeque. There is loud, rowdy music playing. Then I slip away. I want to be fully conscious until the end.”
-Linda Siniard
ABD PhD in Transformative Studies

“My ability to welcome everything and push away nothing where my dying could be of use to others. It would be as simple as possible, ideally with the giggling of my granddaughter as my final sound.”
-Frank Ostaseski
Metta Institute

“Feeling like my relationships are in order and I’ve expressed gratitude and love to everyone in my life. I’m at peace with people and the physical place. I’m at home in my own environment and if I can’t be at home then with elements of my home. The most important thing is to feel prepared spiritually. Even if my death is unexpected and traumatic, I hope to touch that peaceful place within myself.”
-Vanessa Callison-Burch
Chaplaincy student at Upaya Zen Center

“I don’t want to die. I’m going to live in the cloud forever.”
-Andrew MacPherson
Principal at Healthsperien, LLC

“The sound of a friend of mine playing charango. The sensation of my son on one side, my daughter on another and my wife rubbing my head. Lots of laughter and crying equally balanced. We’re outside in my redwood forest.”
-Michael Fratkin, MD
ResolutionCare

“My having a good death means my identity is preserved in the way I see myself and how I want the world to see me.”
-Charlie Blotner
MSW student, University of Washington

“Close to zen-like at home surrounded by water and nature and family and friends. If I had to give up quantity to have high quality, I would happily trade months.”
-Bob Tedeschi
Stat News Journalist

“I’d like to go while I was outside on the Ko’olau Mountains. There is a place called Stairway to Heaven. If somebody could leave me out there, I’d be good. The pigs will take care of me.”
-Billy Greineisen
Director of Strategy, Cox Enterprises

“The number one thing for me to end well would be for my son to be proud of me and to feel like he felt incredibly unconditionally loved. I highly value environment. I would be at home in my lovely, warm bedroom looking out my window and it would be raining. I would be with my family and I would be happy.”
-Danny Kraus
Partner, Wellhaus Media

“I would like to live whatever length the boss has for me and go quickly. I’d like to be at home and have my two boys telling jokes so I can hear them.”
-Anil Sethi
Founder, Ciitizen

“I will be excited to release into the oneness, the emptiness of the universe.”
Michael Kersten
Hill Physician Medical Group

“It would be a shared experience between me, my caregivers and my clinical team where we would make the best decision based on my goals and values and also side effects and tradeoffs of the treatments that are available.”
-Torrie Fields
Senior Program Manager, Blue Shield of California

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:
mushroom - Igor Yemelianov
Barbeque - Andrik Langfield
Trees - Arnaud Mesureur
Stairway to Heaven - Shawn Clover

Friday, December 15, 2017 by Lizzy Miles ·

Wednesday, December 13, 2017

Why I'm Bored With the Debate About Physician Assisted Suicide

by Drew Rosielle (@drosielle)

I’m a little bored of all the discussion about physician-assisted suicide. Mostly it’s because legalizing PAS is going to have zero impact on nearly all of my patients, and I think the significant amount of press and energy it gets is a distraction from other things which actually would improve the lives (and deaths) of the patients and families I care for as a palliative doc.

The last time I blogged about PAS was part of my euphemisms series last year, when I elaborated why I did not like terms like ‘assisted death’ or ‘aid-in-dying’ and prefer ‘assisted suicide’ and ‘euthanasia’ (or ‘voluntary active euthanasia’ to be super-clear) instead. I appreciate that I am on the losing side of history here, people already are and are going to increasingly call PAS some variation of physician/medical - assisted/aid-in - death/dying but I’m still sticking with PAS for now. I’ll also note that the Canadians essentially proved my complaint correct last year, in that their Medical Assistance in Dying (MAID) law includes both PAS and euthanasia, underlining my point that the ‘assisted death’ locutions are imprecise and potentially confusing, and that 'PAiD' is no simple replacement for the much clearer 'PAS'.

In the comments on my post last year someone intimated I must not support legalization of PAD and that’s why I want to stick with the label “PAS.” Well, I don’t like PAD or PAS, but it’s also fair to say I have a variety of thoughts and emotions about PAS and its legalization that aren’t easy to neatly summarize. I’ve always felt uncomfortable with it, but I also never thought to myself Dr Tim Quill should lose his medical license or be in prison. In fact the only thought about it I have which is clear and unambiguous is my leading thesis above, that the attention paid to it completely outsizes its clinical relevance to the vast majority of our patients with serious illness, which approaches zero.

I’m thinking about all this because a recent Annals of Internal Medicine has the American College of Physician’s revised position paper on the ethics and legalization of PAS, along with several editorials, and a nice summary of 20 years of Oregon’s Death With Dignity Act (DWDA) data (Table of Contents here). If you care about end-of-life issues or the debate around PAS, get informed and read this issue - it’s good.

The ACP paper is a well-written, cogent discussion of why the ACP opposes legalization of assisted suicide, and does a far better job than I could of outlining the arguments against it. I agree with a lot of the arguments: patients seek PAS not to actually relieve physical suffering but instead for existential reasons; it is unwise to medicalize existential suffering especially with the drastic and irreversible means of lethal ingestion, and legalizing PAS can undermine the doctor-patient relationship.

However….

The reality is that PAS legalization is unfolding in the US as a human rights/civil rights issue, not really a medical issue, and honestly what us doctors think about it doesn’t seem to matter much.

Large-scale organized medicine in the US (eg the AMA, ACP, etc) is solidly against legalized PAS. (Perhaps this is changing – the California Medical Association changed its position to neutrality prior to the its legalization in CA.) Most palliative clinicians (I think) are against it (obviously there is an important minority in our community who are very much for PAS legalization). (I've not seen good data on this in the US, but I believe it to be true; in the UK when it was polled many years back, palliative docs were the group of docs most opposed to legalization.) But the voters and legislative bodies who are legalizing PAS are not persuaded by our objections. The broad, tangled, clinical/therapeutic, and professional concerns many of us have about it aren’t a persuasive concern, because PAS is seen more through the lens of an individual civil right, and not as a medical issue.

Frankly, PAS remains pretty popular with the public (although I wonder if the public actually understand what it is and isn’t), and I think in the US the wave of legalization is going to continue state by state in the coming decades, and organized medicine is not going to stop this because we’ve already lost the argument to the realm of ‘rights.’ Rights are important, of course (!), but I really want to emphasize this point because I think that when people like me think about PAS we think about our suffering patients and our aspirations to help them find meaning and comfort in their dying days, and all those clinical, therapeutic things we do in hospice/palliative care and medicine to care for patients nearing their deaths, and none of that matters much in the legal debate because the focus is on a person’s right to autonomy and control.

So I’ve been trying to accept and anticipate that this is going to happen, and asking myself how I am going to react to it, and also trying to understand PAS with actual data about actual patients (as opposed to grand pronouncements and philosophical noodling), which thankfully we have, because the Oregon PAS experiment has been highly investigated.

Looking at the data (in the Oregon DWDA paper above and other publications) I have several major observations.

1) The proponents of PAS who claim it is an important option to prevent physical suffering at life’s end should kindly stop making such claims. The data over the year has clearly supported the observation that most patients seek PAS for what I think are best characterized as existential reasons: concerns for loss of autonomy and function, etc. Patients who would (quite literally) rather die than go through the dying process which indeed strips one of autonomy and function. PAS is not, on the ground, actually being used to mitigate unrelenting physical suffering in any major fashion. The proponents of PAS should defend it and promote it for what it actually is, and not use scare language to suggest to people they need this option to make sure they don’t needlessly suffer as they die.

2) The opponents of PAS who claim that it will lead to a slippery slope (it will be used by doctors or families to force poor, disabled, or otherwise vulnerable people into killing themselves) need to stop making that claim, at least without the qualification that that has not happened in Oregon. I.e., we have nearly 20 years of data showing that a well-designed and implemented PAS program can exist without any appreciable slippery slope. I’m not saying that there couldn’t ever be a slippery slope, just that we now have lots of data showing that it is not inevitable. All human institutions and programs like are open to abuse and misuse – the Oregon PAS program and medicine as a whole in fact relies on good faith participation which can be abused. But it hasn’t, at least in any sort of measurable, systematic way. In fact, the people who participated in PAS in Oregon are overwhelmingly insured, white, well-educated, and dying of things like cancer, ALS, and organ failure (not, eg, quadriplegia). (Oregon is a very white state, but still the patients receiving PAS are disproportionately white, but one is curious as to what the data will show in California in the coming years.)

3) I do myself have deep concerns that PAS will undermine the profession, as it transforms doctors from healers to, well, something else. However, I have had to face the reality that this has not apparently happened. I don’t have any data for this one, but I know doctors in Oregon, and I’d have a hard time making any sort of claim to the idea that 20 years of PAS in Oregon has hurt the profession, or health care as a whole there. I still think it could hurt the profession, but like in the slippery slope discussion above, I have to admit that it in reality has not, at least in Oregon, and be honest with myself that my objection was probably my own dislike of PAS and bull-headed professional desire to help dying patients find meaning and solace, even in death. When you're getting emotional at the bedside, you always want to ask yourself "Is this my shit?" and if it is you try to check it. The same, perhaps, with emotional policy decisions.  I really recommend reading this reflection piece in JAMA Internal Medicine written by two Canadian doctors helping a patient die under the new Canadian MAID law in which they describe reluctantly participating in the death of one of their patients. It's a thoughtfully written piece, among other things one senses that this 'assisted death' was in fact full of meaning and connection. Additionally, I have a hard time reading the piece and concluding that these doctors' actions are going to destroy our profession. I know I feel a patient wanting aid-in-dying as a sort of professional failure, but reading this reflection has forced to me acknowledge that I may need to just get over myself there.

4) Finally, the Oregon data continue to show that PAS is incredibly rare. About 0.19% of all deaths in Oregon are with PAS, and while it’s impossible to clearly define what the denominator should be, by one measure PAS accounts for 0.54% of potentially eligible deaths. Over ~20 years in Oregon the number of PAS deaths has risen with population growth but is not growing and growing. Some additional patients get lethal prescriptions and never use it. Literally, PAS is an end of life option for the 1%.

Which is exactly my point.

Mass legalization of PAS is not going to be a catastrophe, but it’s also going to do approximately nothing for literally 99% of our patients at the ends of their lives. And this is why I’m a little bored with the whole thing. I’m not oblivious to the fact that PAS has cultural significance (presumably both positive and negative) beyond its actual impact on end of life care, but the idea you come across all the time both implicitly and explicitly that PAS is an important option to have, I just don’t buy. I’m not saying citizens should be denied this option, and undoubtedly access to PAS is very important to the few patients who choose it, it's just that it seems like a big distraction from far more important work that needs to happen.

Because, there are some actually, really, truly, important things that could happen in this country which would immediately, measurably, improve the lives and deaths and our patients with serious or terminal illnesses.

It’s a cold, grey December afternoon in Minnesota as I write this, but off the top of my head, here are a handful of things that would actually, really, truly improve our patients’ and families’ lives with serious or terminal illnesses:
  • Universal, affordable health insurance, including drug coverage.
  • Universal paid sick leave, including paid family care leave so someone can take 4 months off to care for their dying sister at home without losing their job, their health insurance, and their mortgage.
  • Earlier and more routine access to palliative specialist teams (and depending where you live psychiatrists, geriatricians, and addiction medicine programs).
  • Widely available, home-based palliative/advanced illness management programs which include nurses, doctors, social workers, aides, chaplains, therapists which can provide active disease management at home, alongside palliative symptom management, goals of care planning, and emotional, existential, and grief support.
  • Better, universal primary palliative care training such that primary care providers and key specialists have adequate skills in having goals of care / serious illness conversations.
  • A hospice benefit which didn’t make many of our patients choose between hospice and many commonly used palliative treatments like chemotherapy, blood products, noninvasive ventilation, etc.  
  • A hospice benefit which paid for room and board at a facility.
  • Drug innovation, especially for analgesics which are safer and better tolerated.
There are many more things, big and small, which will truly improve the lives and deaths of our patients and families and PAS isn't one of them.

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

Photo Credit: Boredom score by Flickr user smartfat, under Creative Commons Attribution-NonCommercial 2.0 Generic (CC BY-NC 2.0)

Wednesday, December 13, 2017 by Drew Rosielle MD ·

Monday, December 11, 2017

Conference Review: 2017 End Well Symposium – Design for the End of Life Experience

By Lizzy Miles (@LizzyMiles_MSW)

End Well advertised itself as “a first of its kind gathering of design, tech, health care and activist communities with the goal of generating human-centered, interdisciplinary innovation for the end of life experience.”  I feel privileged to have been able to attend. The Symposium was capped at 400 attendees and sold out early. There was a serendipitous momentary technology glitch that allowed me and two friends to register after it was sold out. Fortunately, the organizers graciously agreed to squeeze us in since we had paid.

The single-day event took place at the Intercontinental Hotel in San Francisco. The location was fitting for the theme of the conference as the entire lobby seating area was outfitted with workspaces and USB outlets for our technology-focused lives.

Because this End Well was the ‘beta’ version, we were all going in eyes wide open with a curiosity of what the experience would be like. I imagine the first surprise was for the event organizers that the event sold out so fast and then there was some grumbling amongst my industry colleagues about the waiting list. Funny, we don’t get indignant with a popular restaurant if they don’t have a table. I think the frustration was a compliment. When you build something cool, people want to be there to watch.

The other unknown with this conference was really who the target audience was. As a hospice social worker in the field, I didn’t really feel like it was meant to be for my profession, but I know it was the right place for me personally. I am passionate about hospice of course, but also technology, innovation and ideas, and I got what I came for, and so much more.

The End Well Symposium format was different from what I’m used to on the conference circuit. It was condensed into one day with no breakout sessions and no audience questions. More than one attendee compared it to a TED conference as many presentations were 15 minutes. The speakers were TED quality as well – dynamic and comfortable in their skin on stage.  As a hospice worker, of course, when I saw that BJ Miller, Frank Ostaseski, Lucy Kalanithi, Jessica Zitter and Dawn Gross were speaking, that’s when I knew I had to attend. They were inspiring as expected. The a-ha moments for me came from the speakers who were not previously known to me.

If you don’t already know these people, you should pay attention to them. They are making waves in redesigning end of life:

Ivor Williams, a senior design associate at the Helix Centre shared a story of how they
redesigned the CPR form in the U.K. to require a discussion between physician and family. I was fortunate enough to sit down with Ivor the day before the conference and our discussion was so rich it has to be its own article (coming soon).

Sound Designer Yoko Sen challenged us to contemplate the last sound we wanted to hear when we were dying. In case you’re curious, I want to hear and feel my cats purring.

Cynthia Perrilliat, Executive Director of Alameda County Care Alliance is building caregiver infrastructures with community navigators that includes training, support and recognition for the hard work that they do.

Architect and strategist Clive Wilkinson reminded us, “Everything in the human environment communicates a message” and implored us to be mindful of settings. He showed us the architectural details of Maggie’s Cancer Caring Centres.

...to name a few.

There was a strong thematic message throughout the day that we can do better and that we need to do better. I lost track of how many speakers quoted the statistic of the variance of where people want to die versus where they actually die. It did get old after a while, and to be honest, no one directly addressed how to solve that particular conundrum. We touched on caregiving, but at a high level. It’s all well and good to recognize a change is needed and to talk about it, but I’m not sure I walked away with any tangible things that I could do.

The call to action presented by Mark Ganz (Cambia Health Solutions) at the end of the day said we should ask ourselves these three things:
1. Do I have hope? Fundamental deep hope that lights a fire in my belly.
2. Do I believe I have the power to drive change? Do I believe I have something to give?
3. Am I willing to risk everything to achieve it?

He made the great observation that, “The speakers we’ve been treated to today are living in a state of yes.”

The Symposium was thought-provoking and powerful and I’m glad I went. It is good to see that they are already planning for next year. Thinking ahead here are some things I hope to see as this conference grows. My wish is that next year there are some speakers who take us on the bridge from the current state to where we want to be. I also feel that there was a little too much emphasis on what is wrong. There were glimpses of some innovations that are being done, but the tone by some was critical towards the system. We do have opportunities, of course, but we also need to take our strengths and enhance those. Depictions and stories of the dying bordered on maudlin. I attest that there are good deaths happening right now in this country.

From a practical standpoint, there was an irony that thematically we can solve for design at end of life through technology and bringing communities together, and yet the Symposium had missed opportunities with demonstrating the power of the crowd. We put post-its on walls, but what about technology in which attendees can vote on comments by the speaker or send in comments like in a webchat?  The timing was so packed, as well as the physical space that there wasn’t really the opportunity to meet and be inspired by all the attendees.

If the Symposium is about being innovative, then let’s be innovative in the moment. There were artists, designers and thought-leaders who were sitting in the audience. How do we create a gathering that maximizes the knowledgebase of the entire room and not just the stage? That would be practicing what we’re preaching.

If you missed out on End Well 2017, pre-registration is open for End Well 2018.  Additionally, what I LOVED about this conference was there were more Twitter-folk then I had ever seen.  #Endwell17 was trending in San Francisco. Search for it on Twitter and you’ll see lots of quotes (and too many pictures of me). I was so very excited to meet in real life so many #hpm people that I have known for years online.

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.

Some highlights from Twitter #EndWell17

Monday, December 11, 2017 by Lizzy Miles ·

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