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

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

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

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

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

The Initial Ask

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

On Mentors

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

The Future of Medicine

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

Let’s Publish This!

For National Women Physicians' Day #NWPD tomorrow, I thought I'd share a few points from my talk on gender bias in medicine. /1

— Esther Choo (@choo_ek) February 2, 2018

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

The Hard Work of Hospice and Palliative Medicine

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

Women Leadership in Hospice and Palliative Medicine

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

Future Collaboration

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

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

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by Lizzy Miles

The day before the inaugural Endwell Conference in San Francisco, I had the opportunity to sit down for tea with Ivor Williams. Ivor’s Endwell biography listed in the program is what caught my attention.

Ivor is Senior Design Associate at the Helix Centre, based in St Mary’s Hospital in London; founder of the research and consultancy group Being and Dying; and co-founder of Humane Engineering, designing digital products that explore the use of technology for health and social good.

Ivor’s focus at the Helix Centre is on innovation at end of life. I really didn't know what that meant, but I wanted to learn more from Ivor. In hindsight, I wish I would have audio recorded our conversation because his way of expressing himself is so thoughtful and profound. I even found myself forgetting to take notes or finish my sentences on the notes that I did take.

Fortunately I wrote down my takeaways from our conversation. These are not necessarily direct quotes, but themes and ideas that came through.

Doctors aren’t experts. As a society we have to move away from the idea that medicine provides certainty.
and yet…
In the U.K., a patient cannot demand treatment.

Death is about power and control. I brought up the conditions in the U.S. where it seems to be that there are a wide variety of views and strong opinions related to end of life. There is the advocacy for euthanasia and then a contingent of people who insist you should have the right to pursue treatment, even against doctor recommendations. Ivor reminded me that America was founded by a variety of cultures and therefore it shouldn’t really be a surprise that we have all these varied points of views.

We need to find a way to be compassionate towards those who fear death. This thought hit home for me because sometimes I forget what it’s like to be thinking about death for the first time. As a hospice social worker who hosts Death Cafes in my spare time, I think about death and dying every day. Most of our patients and family members don’t. What does this mean for how I (we) interact with our patients and families? While there is some information that is common sense to us, how do we communicate that information to those we serve? I want to start reminding myself before every interaction to be mindful of my approach.

Innovation doesn't have to be complex. One of Ivor’s cool projects was a redesigned CPR form in the U.K. to require a conversation between physician and patient/family. I imagine this was quite a process to implement. However Ivor gave me a lovely example of how design and innovation can be simple.

Ivor told me about a hospice that had a room in which physicians would take families to deliver what inevitably would be bad news. As per custom in the U.K, tea was served. However, for convenience sake, the tea was served in plastic cups. It was a cleaning person who noticed the symbolism and raised it as a concern.

“Nothing feels more transient, more impermanent than tea in a plastic cup," Ivor noted.

The hospice listened to employee and switched to using a real teacup for the family conversations. Ivor said the impact was noticeable.

Recognition and ritual matter. Ivor gave another example of a seemingly small detail that could feel symbolic. When a patient dies in an inpatient unit and the family isn’t there, how do you package their belongings? Ivor told of a hospice that got really nice fabric bags for the clothing to give the situation the respect that it is due. Certainly it would cost more, but as soon as I heard of this, I felt in my heart that it would make a positive impact for most families.

Take a breath. Ivor said, “Death isn’t a medical experience, it’s a social experience.” Are we acknowledging the impact our patients have on us? Are we taking a moment to acknowledge our own emotions? Rituals aren't just for patients and families - staff members can benefit from ritual.

In his presentation, Ivor emphasized, “Death involves everyone. Design accordingly.” Ivor implored to the audience that it is all of our responsibilities to think about designing for a better end of life, not only as professionals, but also as humans.

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:
Title Teacup: Morgan Sessions via Unsplash
Candles Mike Labrum via Unsplash

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By Brianna Morgan (@BriannaMorganNP) and Elise Tarbi (@EliseConant)

Amidst rapid growth in the number of palliative care programs, the December 2017 issue of the Journal of Palliative Medicine calls for a pause to consider the blueprints for how we build moving forward. In the issue, Kousaie and von Gunten (2017) compare two hospitals, one that has an established advanced practice nurse only model of palliative care delivery (APN model), and a second hospital implementing an interdisciplinary team including physicians, APNs, social workers, chaplains, and pharmacists (team model) for the same purpose. Compared to the APN model, Kousaie and von Gunten report that the team model reduces length of stay and increases cost savings.

At this moment, there is value in reflecting and evaluating the current practice of palliative care in order to build a better future, including the impact of the composition of palliative care delivery teams. However, we have a number of concerns with the methodological approach to this study and the conclusions drawn from its data.

Of primary importance, the conclusions of this study warrant further scrutiny. In explaining the outcomes described above, the authors suggest that differences in communication styles may play a role, observing that while the APN model tended toward “indirect” interactions with consulting teams, the interdisciplinary team “directly” engaged the consulting team to alter the plan of care more frequently. However, the research design and data do not offer enough support for this conclusion.

First, without outlined details on study design, to which a qualitative study would be well suited, it is unclear exactly how the teams were observed. Second, when reporting observed differences in communication, the authors describe the interdisciplinary team as “the team with the physicians.” This seems to imply that the observed differences in communication are traced to the presence of a specialist physician. A valid question raised by this interpretation is whether this difference in communication is attributable to the presence of a single specialist or discipline, or whether there is something unique about being part of an interdisciplinary team that influences communication styles and therefore, outcomes. Lastly, there is the question of whether these results are generalizable. Not all inpatient, clinic-based, or home-based programs, may have the resources to staff an interdisciplinary team and scarcity of fellowship programs limits the availability of dedicated specialist palliative care physicians. Team composition needs to be investigated separately across these care environments.

In this short letter to the editor, the authors include information on only a handful of variables (e.g. provider composition of the teams, provider FTE/consult and admission volume, length of stay and average cost savings/day). It is worth considering whether other contextual factors impact the success of any palliative care team, as well as the particular results of this study. This includes provider factors (e.g. gender, years of experience, feelings of autonomy and empowerment) as well as environmental factors (e.g. disease-related characteristics of the patient population, systems-level signs of support for palliative care such as palliative triggers). Additionally, length of stay and cost savings may not be the most meaningful outcome measures for evaluating the success of a palliative care team. Consideration of outcomes from the Measuring What Matters initiative (Unroe et al., 2017), including care consistent with treatment preferences or a global assessment of patient/family experience (such as feeling “heard and understood” proposed by Gramling et al. (2016)), may reveal a more complete view of the influence of the palliative care team composition.

With mounting evidence highlighting the benefits of palliative care, we agree with Ferrell and Smith (2017) that there is a need to evaluate which practices provide the best blueprint to refine and define the future of palliative care. In unpacking the black box of palliative care, exploring the composition of the palliative care team is an appropriate place to start. Determining which metrics best indicate success in which environment will help in identifying teams most suited for the appropriate outcome. Understanding the environment, including the needs and resources of each setting, is imperative in determining which team composition is appropriate for which setting. This will create the type of robust, rigorous regional and national research that is needed to define and refine optimal care delivery models in palliative care.

Brianna Morgan, MSN, AGPCNP-BC, ACHPN is a Nurse Practitioner and Palliative Care Coordinator at the Abramson Cancer Center at Pennsylvania Hospital. Elise Tarbi, MSN, AGPCNP-BC, ACHPN is doctoral candidate in Nursing at the University of Pennsylvania where she is studying existential distress. The pair ponder palliative care while running through the streets of Philadelphia with their dogs.

References

Ferrell, B. R., Smith, T. (2017). The Landscape is Changing. Journal of Palliative Medicine, 20(12), 1306–1306. https://doi.org/10.1089/jpm.2017.0580 (Pay Wall)

Gramling, R., et al. (2016). Feeling Heard and Understood: A Patient-Reported Quality Measure for the Inpatient Palliative Care Setting. Journal of Pain and Symptom Management, 51(2), 150–154. https://doi.org/10.1016/j.jpainsymman.2015.10.018 (Open Access)

Kousaie, K., von Gunten, C. F. (2017). Models of Palliative Care Team Composition: Nurse Practitioner-Only versus Interdisciplinary Teams that Include Specialist Physicians. Journal of Palliative Medicine, 20(12), 1313–1313. https://doi.org/10.1089/jpm.2017.0380 (Pay Wall)

Unroe, K. T., et al (2017). The Implementation of Measuring What Matters in Research and Practice: Series Commentary. Journal of Pain and Symptom Management, 54(5), 772–775. https://doi.org/10.1016/j.jpainsymman.2017.07.030 (Pay Wall)

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by Vickie Leff

Every day, we get involved in unbelievable and incredible situations. Tragedy, sadness, horrific trauma, despair, and hopelessness all wrap themselves around the cases we drop into. We step onto the stage and become part of the story.

Moral distress – the discomfort, angst, and frustration related to situations in which we think we know the “right thing” to do, but cannot due to the situation – is endemic to palliative care and hospice work. 

Some examples are:

• Aggressive chemotherapy for a dying cancer patient with days to live.
• Dumping the truth on a patient overwhelmed and alone.
• Following the treatment wishes of a family that which are incongruent with the patient who can’t speak for themselves.
• Prolonging dying because a family says they are waiting for a miracle.

It’s not the same as the stress we feel day to day about our work as palliative care clinicians. This feels different; it gets under our skin, and stays with us. What do we do with these feelings? How do we recover when our souls have been tattered? How do we suffocate the intense desire to “change the system”? How do we do this and remain present and authentic to our patients and families looking at their situation?

I scream in my head: Why is the family not letting him die peacefully? Why is the team pushing him out the door, don’t they know he’s dying? It’s a useless exercise, but it helps alleviate (momentarily!) my anxiety when dealing with these complicated, unanswerable questions. As palliative care clinicians, we calmly address these issues, advocating for our patients, hoping our perspective and expertise may provide some alternatives. Many times, we are successful in changing the conversation; sometimes we are not. And then there are the cases when we become as entangled as everyone else, and it seems like a failure. I often feel selfishly relieved when a patient dies, because the angst has ended.

Moral distress is worse for those of us who do not have as much power as others, especially among nurses¹. This makes sense; doctors can more effectively change treatment, write orders, and direct care. I spend a good deal of time speaking with bedside nurses and other colleagues about their distress over plans of care, and their frustrations with the surgeon who won’t consult palliative care because they don’t want to “give up.” Most of all, I listen every day to the struggles they have related to feeling powerless in extraordinary situations.

The “crescendo effect” of moral distress is real and dangerous. It can linger for months and years. We all have a difficult case burned into our minds. The result of moral distress, especially if we are exposed to it frequently, causes emotional exhaustion, unrealistic expectations, close-mindedness, and boundary blurring between the suffering of the patient and the family and our own ².

As a clinical social worker, I was trained on how to practice self-awareness, or how our issues, reactions, emotions are triggered by therapeutic encounters; and how these impact our work with patients and families. It’s not as easy as it sounds; this takes deliberate practice and natural curiosity. And even then, we are not immune from moral distress. Self-awareness is probably the one skill  we can learn that can build moral resilience and help us remain emotionally available to our pts/families and colleagues.

We can choose to sweep it aside, become immune and/or cynical or we can take time to examine moral distress and work toward solutions.

Identify it early on. Speak about it directly with each other and our colleagues not as failure or barrier but as an opportunity. Only then can we untangle our opinions, and the emotions that keep us frustrated and sometimes frozen.

We can also focus on resilience. While many resilience strategies are solo in practice, the more social strategies can help us most with moral distress. Informal social support, debriefings³. (See also the Pallimed article, "The Clinical Social Worker Role in Interprofessional Practice"), roundtables, case discussions, Schwartz rounds can all give voice to this distress. Learning from each other, decreasing the isolation that comes with stress, and finding creative solutions to unsolvable problems can give us the glimmer of hope we need to continue and even feel refreshed.

Challenging ourselves to see the other side of an argument or plan, remaining open minded, avoiding catastrophizing, and remaining curious (along with regularly scheduled vacations!) can ensure we continue to find meaning and occasional joy in this emotionally difficult work.

We should expect moral distress; it is part of our work. We can welcome it into our daily discussions as a way of understanding our patients, families, and ourselves.

¹ Whitehead, P. “Moral Distress Among healthcare professionals: Report of an Institution-Wide Survey”. 2014. J. of Nursing Scholarship. 47:2.
² Epstein, E., Hamric, A. “Moral Distress, Moral Residue, and the Crescendo Effect”. 2009 J. Clin. Ethics. 20(4).
³ Leff, V. “A Successful Debrief Program for House Staff. J. of SW in EOL & Pall Care. 2017 1552-4256.

Vickie Leff, LCSW, BCD is the clinical social worker for Palliative Care at Duke University Hospital. She uses running and humor (not always at the same time!) as her primary coping mechanisms.

Photo credits:
Title photo Vincent Burkhead via Unsplash
Mannequin Edu Lauton via Unsplash
Fire Amuri Am via Unsplash

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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 Mandrola, Abagail 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)!

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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)

• HPM Board Certification Registration Period Opens (ABIM) - Jan 8, 2018-Jun 14, 2018
• Hospice Medical Director Certification Board Application Open - Dec 12, 2017- Mar 6, 2018

Spring (Mar, April, May)

• Cambia Sojourns Scholars 2018 Letters of Intent due - Feb 1, 2018
• SWHPN Annual General Assembly - March 11-13, 2018, Boston, MA
• The Annual Assembly of Hospice and Palliative Care (AAHPM/HPNA) - March 14-17, 2018 - Boston, MA
• Pallimed/GeriPal 12th Annual Gathering - March 15, 2018 @ 9p ET - Location TBD in Boston, MA
• National HealthCare Decisions Day - April 16 - Nationwide
• Implementation of Quality Measures for Community-Based Care Programs for Serious Illness: A Workshop from the NASEM Roundtable on Quality Care for People with Serious Illness - April 17, 2018 - Washington, DC and Free Webinar
• NHPCO Management and Leadership Conference - April 21-24, 2018 - Washington, DC
• Hospice Action Network Advocacy Intensive - April 25, 2018 - Washington, DC
• Caring for the Human Spirit Conference (HealthCare Chaplaincy Network) - April 23-25, 2018 - New Orleans, LA
• Palliative Care Research Cooperative Group (PCRC) Investigator Meeting - April 25-26, 2018 - Denver, CO
• Palliative Care Quality Network Spring Conference - May 3-4, 2018 - San Francisco, CA
• Hospice Medical Director Certification Board Testing Period - May 17-Jun 5, 2018
• 10th World Research Congress of the European Association of Palliative Care - May 23-26, 2018 - Bern, Switzerland

Summer (June, July, Aug, Sep)

• Cambia Sojourns Scholars 2018 Full Application due - June 1, 2018
• Canadian Hospice Palliative Care Association Learning Institute - Jun 14-16, 2018 - Ottawa, Canada
• HPM Board Certification Registration Period Closes (ABIM) - Jan 8, 2018-Jun 14, 2018
• Hospice and Palliative Medicine Fellows finish and become attendings! - June 30, 2018
• New Hospice and Palliative Medicine Fellows begin! - July 1, 2018
• Hospice and Palliative Care Virtual Conference (NHPCO/AAHPM/HPNA) - July 18-19, 2018
• AAHPM Intensive Board Review Course - Aug 9-11, 2018 - Minneapolis, MN
• AAHPM Pedi-Innovate Course - Aug 9-11, 2018 - Minneapolis, MN
• MD Anderson Updates in Palliative Care and Physician Board Review Course - September 11 – 13, 2018 - Houston, TX
• MD Anderson 22nd Annual Interdisciplinary Conference on Supportive Care and Hospice and Palliative Medicine - September 14-15, 2018 - Houston, TX

Fall (Oct, Nov, Dec)

• 22nd International Congress on Palliative Care - October 2-5, 2018 - Montreal, Canada
• National Hospice Month - Nov 1-Nov 30, 2018 - Nationwide
• NHPCO Interdisciplinary Conference - Nov 3-7, 2018 - New Orleans, LA
• CAPC National Seminar - Nov 7-10, 2018 - Orlando, FL
• HPM Board Certification Exam (ABIM) - Nov 20, 2018
• Palliative and Supportive Care in Oncology Symposium - Nov 16-17, 2018 - San Diego, CA
• NHPCO releases Annual Facts and Figures (usually in the Fall)
• End Well Symposium: Design for the End of Life Experience - Dec 6, 2018 - San Francisco, CA

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.

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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.

6 wks ago we noted EoL patients had multiple bed moves to make beds for new patients. We acted immediately and within 24 hrs had implentmented our “Blue Ribbon” scheme. Blue Ribbon patients must NOT be moved. Since then not a single EoL patient has had a non-clinical bed move. pic.twitter.com/lHBXRL6uRp

— Rick Strang (@rickstrang) December 15, 2017

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.

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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 Holy 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.

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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.

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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.

My conclusions are:
1. This was a fantastic and well run trial
2. But they probably chose the wrong primary outcome
3. And underpowered given pragmatic approach#hpmJC

— Katherine Sleeman (@kesleeman) December 13, 2017

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:

• Good short review by the Cicely Saunders Institute on PubMed Commons (PS would love to see more HPM Fellowship Programs make use of this for Journal Club Reviews. Steal this idea!)
• Nice detailed statistical analysis plan for this study published to help prevent bias during the analysis phase. I learned a lot about trial design in reading this.

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.