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

“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

“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.


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. 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 ·

Monday, December 4, 2017

National Hospice and Palliative Care Month: Divide and Conquer

by Christian Sinclair (@ctsinclair)

Now that National Hospice and Palliative Care Month (NHPCM) is in the books for 2017, December is a good time to reflect on what these awareness months can (and cannot) accomplish and how we can make a better strategy for the future. Awareness campaigns have blazed brightly through the bracelet and ribbon eras, and are firmly in the social media era with no signs of stopping (other than possibly fatigue from so much awareness about awareness campaigns.)

No single group is technically is in charge of National Hospice and Palliative Care Month. Very few calendar-based advocacy campaigns (CBACs) are trademarked, but there is usually one organization that champions them. Most CBACs get formalized with some sort of political proclamation, like the National Hospice and Palliative Care Organization (NHPCO) (formerly National Hospice Organization (NHO)) did in 1985 with President Ronald Reagan. and Presidents Clinton, Bush, and Obama (not sure if Trump did anything with it this year.) At some point National Hospice Month became NHPCM, probably around the same time NHO became NHPCO in the mid-2000's when palliative care was a growing presence in the health care conversations. NHPCO continues to be the organization which puts the most time and effort into NHPCM as they maintain social media resources, graphics and outreach tools on their website, whereas most other national organizations in hospice and/or palliative care do not.

In 2010, Renee Berry and I created a Facebook Page for National Hospice and Palliative Care Month, because no one else had done so yet. The page has been run as an extension of Pallimed social media as a volunteer effort. Since then the page has featured graphics and posts supporting hospice and palliative care, with most of the efforts centered around November. Messaging for the page has been puzzling over the past few years, and here is my central thesis of this post:

National Hospice Month and National Palliative Care Month need to split up.

Now before any rumors start swirling, I am not calling for any change to the name of the specialty, the name of the fellowship, the names of conferences, the names of organizations (NHPCO, AAHPM, HPNA, SWHPN, etc) or anything like that. But for a public awareness campaign, you need to be narrow and explicit if you expect to get any point across and NHPCM cannot do that when they are combined. I have seen this first hand with both the Facebook Pages of Pallimed and NHPCM.

This year (like years past) I created three different types of graphics with different messaging for hospice only, palliative care only and both hospice and palliative care. As you can see people shared them at different rates, meaning there were some people who were looking for a specific hospice message or specific palliative care message. Take a look at the numbers for the photo frames people could use for their profiles: Hospice (157), Palliative (18), Combined (73). People are looking for specific and unique ways to portray what they do. We should also think the same about the messages we broadcast.

Our message gets muddled during National Hospice and Palliative Care Month. It makes sense to us, because we know what we do every day, but if we are working on awareness then we need to separate, simplify and be direct. In splitting the message between hospice OR palliative care people may see similar messages during the month and then end up equating both approaches, when they are quite different.

Take early access to either hospice or palliative care. With palliative care, the primary message about getting access upstream early in a disease course while people are still getting aggressive treatments long before they may be considered terminal, but with hospice the message about getting access upstream is about seeing people 3-6 months before they die and not 3-6 days or 3-6 weeks. Those patient populations and clinical scenarios are quite different and the key takeaway message is far too nuanced if you try to include them both in any specific campaign.

Another barrier for building awareness and breaking down myths, is having the two types of care jammed against each other separated by a conjunction or an ampersand. This means you can't make short strong statements because you will likely have to do some explaining about Medicare Hospice Benefit rules or the lack of widespread access to palliative care clinics. We waste time explaining the difference or giving equal time instead of sticking on a single message for a single service for a single month.

These challenges noted above shouldn't impact things like the name of the specialty, fellowship, conferences or organizations, because many of the same skills, knowledge and experience is helpful in both parts of hospice and palliative care. Those names are really not about public messaging, but about professional development. There is natural synergy between hospice and palliative care in preparing the workforce of the future. But let's change how we talk about it to the public!

While I am not a marketing professional, I have a proposal to our field. Let's give November back to National Hospice Month exclusively, and pick an upstream month, like May or June for National Palliative Care Month*. With refined messages for the public, they can demand the type of care they deserve to improve their quality of life wherever they are in treatment or goals. Who is with me?

Christian Sinclair, MD, FAAHPM (@ctsinclair) is editor of Pallimed, a former hospice medical director and current outpatient palliative care physician at the University of Kansas Cancer Center. He has a experiential degree in Social Media and Health Care Marketing from the school of life. 

* I keep track of all relevant Hospice and Palliative Care CBACs and anniversaries on a collaborative spreadsheet. (help wanted!) May is a little crowded and overlaps with Australia's Palliative Care week, but also with the UK's Dying Awareness week and Children's Hospice week. June is really pretty empty, and overlaps with nursing assistants's week. So if I had a choice I would pick June.

PS go like our NHPCM page on Facebook

Monday, December 4, 2017 by Christian Sinclair ·

Friday, December 1, 2017

The Emotions of the Dying

By Lizzy Miles

In my role as a hospice social worker, I find that there are recurring concerns expressed by family and friends of the dying. These are some of my responses to their worries. Mostly I find that I am normalizing behavior that they find confusing or unsettling, while also validating their discomfort. Families often feel helpless and I do my best to reassure them that what is happening with the patient is part of the process of dying.

I am careful to be mindful of faith/cultural beliefs of the patient and family so as to not suggest an explanation that is outside of their dogma.

Restlessness is a common symptom for patients who are dying. It can be distressing for family members because you want to help calm them and nothing seems to work. Medicine may help some, but you may see them still moving around and/or trying to get out of bed.
• Know that restlessness is normal and part of the process.
• When patients are restless, they are experiencing a disconnect between their conscious and unconscious mind. They subconsciously know they are dying, but their conscious mind just knows they need to go somewhere. There are books about the travel metaphors patients sometimes use. I need my ticket. I’m going to be late for the train. There is a helicopter waiting for me.
• As a patient gets closer to death, they often settle down on their own.
• Be mindful of guest activity in the room.  Restlessness can sometimes be contagious. The patient, even when their eyes are closed, can tell if their family is unsettled.
• Observe hand gestures. Sometimes patients experience a “life review” and you may notice they are miming favorite activities such as fishing, construction, driving or eating.
• Update hospice staff if you see changes or if the patient is at risk of falling out of bed.

Waiting for Death
The feeling of uncertainty for patients and families during this time can be unsettling. How much time do they have left? A patient may say they are ready to die, and then express frustration when it doesn’t happen right away. Sometimes they say, “Why isn’t God taking me?”
• Frustration with the uncertainty of everything is normal for patients and their loved ones.
• For loved ones, it is an act of love to have patience with the process of dying.  This includes an acceptance that a patient’s withdraw from the outside world is part of the process.
• When patients are imminently dying, internally, they may be experiencing a “life review.” As part of this process, patients are reflecting on their lives. If a patient has regrets, it may take them a while to sort through everything. 
• Patients usually withdraw from the outside world with or without medications. It is not necessarily medication that is making them talk less or sleep more.
• Prognostication (predicting when) is never an exact science. Hospice providers do their best to give a range because every patient is different. The emotional aspect of dying can affect the timing of how fast or how slowly everything happens.

On “Letting Go”
The act of letting go for a dying patient may be more complicated than family members and friends realize. Patients may want reassurance from their loved ones that it’s okay to “go,” however, there might be other factors.
• Patients who were accepting of death “in theory” may be scared now. Even patients with strong faith who feel they lived a good life and believe in Heaven can be nervous.
• The patient may not be able to “let go” when certain people are present or until someone arrives. Every patient is unique, and we may not be able to anticipate the right conditions for them to feel okay with letting go, but it usually makes sense afterwards.
• As part of the process of letting go, patients often become more withdrawn and less interactive. This is their “leave-taking” behavior. We cannot stop them from dying. If we cling too tightly, it may just make the goodbye more difficult for them.
• A patient could die in front of a room full of people, or may choose to die in the middle of the night when no one is there.
• If you have already told your loved one, “It’s okay to go” – be aware that if you tell them multiple times that it’s okay to die it may be feel like you are pressuring them. Don’t forget, dying can be scary!  Perhaps you could say, “Take your time. Go when you’re ready.”

With every patient death, I learn more. In addition to my personal and work experiences with dying, I am an avid reader on the topic. Here are some books that I found helpful on the subject of actively dying.

The Four Things that Matter Most by Ira Byock
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying by Maggie Callanan and Patricia Kelley
Visions, Trips, and Crowded Rooms: Who and What You See Before You Die by David Kessler
The Grace in Dying: How We Are Transformed Spiritually as We Die by Katherine Singh

Photos via unsplash
Samuel Zeller
Dan Gribbin

Lizzy Miles, MA, MSW, LSW is still trying to figure out how she needs to project a happy-go-lucky vibe. She is a hospice social worker in Columbus, Ohio and regular contributor to Lizzy authored 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.

Friday, December 1, 2017 by Lizzy Miles ·

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