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A Conversation between Two Specialists

by Allie Shukraft and Lizzy Miles

At both ends of the generational pendulum lie two groups that may seem to be daunting to some: children and the senior population.  These are specialty populations because there are unique considerations with aspects of their medical care, especially within the framework of palliative and hospice care.

Here Allie Shukraft, pediatric palliative care social worker, and Lizzy Miles, geriatrics hospice social worker, discuss some of the differences and similarities between these two seemingly divergent specialty populations. Allie and Lizzy also describe their social worker roles as they relate to their patient groups.

This article about Developmental Life Cycles is the first article in a series of planned joint conversations into these populations. (Read the other posts: Developmental Life Cycles, Social Work Research, End-of-Life Decisions)

Allie: For children, developmental stages are different than adults, but basic needs are the same. There is a wide range in understanding and experience in pediatrics, and this can impact the tasks and goals that the family chooses to strive for. However, the needs are much the same as those of any age: to be loved, to have understanding, and to be unafraid. Luckily, most children have their parents and siblings, if not a floor full of caring staff-members throughout their palliative course.

Lizzy: I agree with the "needs" for any age. I do think that applies to my patients as well. As far as development cycles go, gerontology is a newer area of study than pediatrics. In gerontology, developmental cycles are not as clearly defined as they are with children. You could ask five different experts and get five different answers. We don’t categorize our patients by age because our clients do not use their age to define themselves. My favorite intervention with elders is Dignity Therapy, developed by Harvey Chochinov. The premise is simple: to see patients as they see themselves. Our patients don't see themselves as infirm, they remember when they rode motorcycles or traveled to some foreign country at the drop of a hat. Their approach to their dying is going to be less about their age and more about their general philosophy towards life.

The best thing we can do for our gerontology clients is to get to know them and have them feel that we "know" them as well.

Could you give me some examples of how your approach might differ based on developmental cycle for children?

Allie: Well, children are going to differ greatly in their own view of death. Some of this will be along developmental lines, and some on experiential lines. If the child has already experienced a death, such as a pet or a family member, for example, this loss can color how the child views death and the words that he uses to describe it. At various stages, the concept may be too abstract for them to fully comprehend, or may include magical thinking to explain concepts beyond their understanding. There are some great resources out there for more specific information, such as The Dougy Center, which has a list of stages and understanding.  When looking at the child’s own death, there is often a great deal of fear especially if the family won’t talk about it. Here children might express a desire to stay awake out of fear they will die in their sleep, or an unwillingness to be separated from their parents.

The social worker’s role is to try to get everyone in the family talking honestly about death so that the child can express and worries or fears that he may have and the team, particularly the parents, can talk about how to address these issues. One approach for a 9-year-old, for example, might be to try to get him to talk about what death is and why he thinks he is dying. Developmentally he is starting to have a concrete understanding the permanence of death but is likely to have fears about death being something painful or that will involve harm to his body. Talking through what we know will happen and what we hope will happen allows us to combine the medical with the metaphysical and bring in his parents’ (or his own) spirituality and belief systems.

​Lizzy: I'm glad you brought up spirituality because a person's spirituality (or non-belief) can definitely be an influential factor on their views of dying. While not directly tied to a developmental stage, my experience has shown that the older the client is, the more likely they are to have a strong religious orientation and/or church affiliation. A belief in heaven does not necessarily mean a greater acceptance of death though. Also, we still need to assess spirituality and not make assumptions, because I have seen 99 year old non-believers too.

When I think about the different generations within gerontology and approach towards death, I would also want to acknowledge that an older age does not guarantee an acceptance of death. The process of dying can still be a scary concept ever for elders who have lived a long life and have a strong "faith."

You mentioned previous experiences with death. I always ask my hospice patients what experience they have had with other people dying, especially looking for firsthand bedside experience. If the patient had been bedside and it was a peaceful moment with their loved one, they may be less afraid. If they have not had experience, then I can share with them my own assurances from my work at the bedside. My role is to provide assurance that we will control symptoms and that a peaceful death is possible.

Allie: When looking at a pediatric death, we are also fortunate on the inpatient side to (typically) have access to certified child life specialists (CCLS) who have education in childhood development, medical play and education, and legacy-building. Using these skills they take the lead in memory-making for the child and family, helping the child to make gifts for his or her family such as hand molds or footprints.  Some even write songs as part of their legacy with our music therapist.  In this way, although they have less life to review that adult patients, they are still able to leave an indelible mark for their families that keeps their stories going.

Read more posts about social work on Pallimed here.

Allie Shukraft, LCSWA, MSW, MAT, is a pediatric palliative care social worker for Carolinas Healthcare System in Charlotte, NC where she loves reading and walking with her dogs. Although she is still learning how to use it, you can find her on Twitter (@alifrumcally).

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW
Photo Credit: cabancreative via Compfight cc

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Last Thanksgiving, we published 20 ways to break the ice at the holiday dinner table about wishes, values and proxy decision makers when it comes to health issues. Thanks to all the people from our Pallimed Facebook page who offered so many clever suggestions last year! If you have more you can always leave them in the comments.

With the recent IOM Report focusing on Advance Care Planning being a normal part of a the life cycle of responsibilities, I had been trying to think of creative ways to bring this to a broader audience. Honestly, who wants to talk about advance care planning, living wills, or health care power of attorneys? None of those terms are particularly interesting nor engaging. The data tells us, that people know they should do these things, but few people rarely do.

This idea of mashing up superhero and comic book culture with advance care planning has been in my head for a while, so it has been nice to work over the past week with my friend Ryan Westhoff to finally see it through to fruition. It also nicely coincided with my need to update a  presentation about presentation skills and tools, so I made good use of some new ones for the slidedeck below. Using Canva, I was able to concentrate on design once the content was drafted. If you are looking to make a slidedeck with high-impact visuals I would really recommend it as a tool. Canva is very affordable (pretty much free, some visuals cost a $1) and has good design flexibility.

So this Thanksgiving, without further delay, we present to you, "Who will speak for Superheroes when they get sick?" Happy Thanksgiving from the team at Pallimed to you!



PS We also added a new resource page on advance care planning with links to key materials.

PPS If you have any fanboy or fangirl corrections to make, we welcome them.  Also if you have any other great examples please share them with us on Twitter, Facebook or in the comments below.

PPPS Thanks to the excellent blog Polite Dissent run by Scott who analyzes comics, film, and television from a health care perspective.

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Advance care planning is not just for when you are seriously ill or possibly dying. Sudden accidents make these issues a reality for adults of all ages. Making your health care wishes known to people you trust and assign as your decision maker is something every competent adult should do.  This is part of being a responsible adult, just like having a job and paying your taxes. In these documents you can help document your values and goals. These documents are not just about avoiding unnecessary care, as is a common myth. If you feel strongly about having all opportunity at cure no matter the odds, you can still use these forms. Sharing this information with someone decreases the stress and risk of depression and anxiety in those making the decisions. You make plans for people to water your plants and care for your pets when you leave on a trip, so let's dedicate some time to some bigger questions too.

Here are some links to help you get started.

Background Information
Definitions of various parts of advance care planning (via National Institutes on Health)

Documents to download and fill out
(any of the following will be a good start, look at them and find which works best for you)
Caring Connections
Caring Conversations
Five Wishes

Advocacy for Advance Care Planning
Consider the Conversation
National Healthcare Decisions Day (April 16th, every year)
The Conversation Project

For fun and getting other people engaged please check out our slidedeck asking the eternal question: What happens when superheroes get sick? You are free to use this slidedeck or indvidual slides within with attribution to: Christian Sinclair and Ryan Westhoff of Pallimed.

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If you’ve ever been admitted to the hospital you might realize what a well-oiled machine it is, and must be to function well. Depending on what diagnosis is at play, whether that is illness or pregnancy, there are a series of things that get set in motion the moment someone enters as a patient. There are protocols, which say: if this, do that. Most of the interventions and medications ordered are what people in health care call standard of care, meaning when x is the diagnosis most people get y.

While this system is in place for the patients’ benefit, to limit errors and reduce subjective variance for treatments, there are some negative things that come with this as well. Many of these automatic triggers for treatment can make a patient feel they are on a moving walkway, taking them on a path with only one direction.

I often meet patients and families at the end of this path, by that time frustrated, exhausted, and confused at what all of the treatments and procedures were for. They shrug their shoulders resigned to the corralling; vocalizing their discontent with where they feel the system has taken them.

The truth is, while the system is manufactured to push a certain direction, there is always a choice. Patients and families forget that they can step off of the moving walk at any time. Remember, that our medical world favors autonomy and gives ultimate consent to the patient.

This does not mean it would be wise to make decisions in flippant, uninformed, or in haphazard ways. However, I absolutely advocate for informed discussions on what other alternatives there are, especially for major interventions.

You should feel empowered to say “I know that most people are treated with surgery with this diagnosis, but can we talk about what would happen if we didn’t do surgery” or “They’ve told us our mom will need rehab, frequent doctor visits, labs drawn, and extensive medication management, could you tell us how things would look if chose not to go down that path?”

Many assume that if there are alternatives, that these would have already been discussed or presented. Let me tell you the medical machine is unfortunately not set up in this way, the most common plan of action is what gets recommended and carried out. It takes a bold voice to stop the current and ask “Is there another option?” Just because no one has mentioned another choice, doesn’t mean there isn’t one. You always have a choice.

The choice for what is being done is most important as we near the end of our lives. This is where the path can lead in nearly opposite directions. With hospice, families have chosen to step off the automatic disease centered path and start journeying on the patient centered path. Nothing in hospice is automatic, but instead individual decisions are made, usually with goals of quality of life as paramount.

The medical system excels at what it is designed to do; fix and treat disease in an automatic way. The problem is we are more than mere disease; which is why we should always have the freedom of choice.

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune.  It is re-published here with the author's permission under a Creative Commons license.

Image credit: Asymmetry Observations via The Funny Blog

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by Kyle P. Edmonds, MD

For those of us in the Hospice and Palliative Care field, the wrenching decisions asked of patients and families by modern medicine are a daily reality. On our consultation service, as I know happens on many others, we are often asked to become involved in determining the plan of care for those patients who have been or will be ventilator-dependent. On any week, we may round on a patient and family who are looking at the uncertain future of a percutaneous gastrostomy with tracheostomy and a long-term acute care attempt at ventilator wean. As they are considering their options of facilities, families often turn to us and ask “who will help us with these conversations there? There will be a palliative care team, right?” The answer, of course and unfortunately, is “no.”

Local San Diego reporting nonprofit inewsource has produced a fine series of articles, videos and vignettes in their series Impossible Choice looking at long-term care for patients who require high-level support Their reporting has been featured on PBS’s NewsHour with Judy Woodruff. According to their reporting, even Joan Teno (@JoanMTeno) “was surprised to learn California had such large concentrations of people living on life support in nursing homes.” Nationally, Teno “found that on a given day, about 13,000 people, or 1 percent of these nursing home residents, are kept alive by a ventilator or tracheostomy and a feeding tube. One-fifth are in California.”


For reporter Joanne Faryon (@JoanneFaryon), the impetus of this story came almost a year ago with her investigation of the troubles at San Diego Hospice when she became aware that there were places that healthcare workers referred to as “vent farms.” She state that she saw long-term acute care facilities (hereafter referred to as “LTACs”) as an “important part of the [hospice] conversation” and a place where the reporting “crystallized.” In her behind-the-story videos, she describes walking onto the floor of an LTAC and being told “Don’t look in the [patient] rooms, these are their homes” and being struck that these long-term patients did not look “comfortable” but were rather contracted, contorted and in need of constant care.


Much of what we do in modern medicine places patients and families in impossible situations. A husband named Steve is described in the first article as having been told in the hospital that his wife should go home on hospice but then hearing from another physician who “offered Steve hope instead. He said Rafaela was a ‘fighter.’ ‘He said, ‘You have to take one day at a time. I can give you information based on studies, based on statistics, but every case is different,’’ Steve recalled.” That moment, so familiar to all of us, is described as: “It’s what he wanted to hear. He looks back and knows he made an emotional and not a rational decision by refusing hospice, but as a husband who didn’t want to lose his wife, he was given an impossible choice.” Another patient’s mother describes the position of decision-maker: “I think it’s a horrible position to be in, to make the decision for someone else. Especially someone else who understands what’s going on.”

The way that patients and families are guided through these decisions has the potential for long-term consequences, including complicated bereavement. As the article points out, some of the thought-leaders on this topic here at UC San Diego recommend (pdf) employing different communication and decision-making styles depending upon the assessed level of patient or family coping. Enhanced communication skills prevents conflicting messages as pointed out in the article by Dr. Lawrence Schneiderman, family physician and bioethicist “The doctor says, ‘Gee, this won’t work. Do you want us to do it? That’s just absurd.”

As a caregiver in this impossible situation, Steve describes that “His days feel like an endless loop, and just when he thinks he’s used to it, something or someone, maybe an old friend who asks about Rafaela, sends him into a freefall.”

The family members of these patients are treated well by Joann Faryon who describes them as “[having] infinite hope in the bleakest of circumstances, seeing small gestures — a grunt or the batting of an eyelash — as signs the person they love is slowly coming back to them.” In these difficult situations, I often think of the finding of Kuehlmeyer, Borasio and Jox in the Journal of Medical Ethics that those family members who did not know the end of life wishes of their loved one interpreted nonverbal behavior or the very act of surviving as a “will to live.” As the article describes, “Hoping for a miracle in the face of a grim prognosis, circumstances cajoling them into magical thinking, they stand by the bedsides of wives and husbands, fathers and daughters, waiting.”

With many of these patients severely impaired but in minimally-conscious states (MCSs), they show inconsistent responses to those around them. Occasionally opening eyes or grasping at objects. As I watched Dr. Jay Rosenberg describe this all-too-common situation, it brought to my mind the reinforcement schedules where the most lasting behavior change is created by a schedule where reinforcement is provided sporadically and unpredictably. For Nancy, the mother of one of the patients (who has spastic quadriplegia and is not in a MCS), she describes her daughter’s inconsistent responses as “evidence Maria continues to find joy in life. ‘I cannot pull the plug on somebody like that who expresses the fact that they’re not ready to give up.’”

In another, related, way these inconsistent responses are subject to confirmation bias, described well here in relation Steve: “But he insists she isn’t like the others on the unit who lie in bed all day staring into space. ‘That’s not my wife. Most of the people on subacute do it. My wife doesn’t do that.’”

Many of us, myself included, would love to approach these LTACs with an agenda based primarily in our sense of what we would want. I find bravery, however, in the statements of the families in these articles that “I would never want this for myself, but I know that he/she does.” I also find comfort in the fact that the LTAC featured in the story is part of a health system that employs advance care planning specialists, “Sharp is the only local health care company that has an entire department dedicated to helping people navigate end-of-life issues.” The specialist interviewed for the second article, Teresa Vaughn, “doesn’t let the negative term ‘death panel’ get in the way of her work. She embraces it. Deciding how you want to live and how you want to die should be something everyone considers because everyone dies.” Dr. Ken Warm, on the medical staff of the LTAC, states that he quickly discovered that being seen as having an agenda worked at cross-purposes: “I saw (early on) that if I tried to give my opinion that we shouldn’t go on, that made them less able to have me be a source of information.” So he’s described as being more patient now and guiding these families over time.

It is important for those of us who are relatively healthy to keep in mind the lessons of prospect theory, which demonstrates that we are likely quite bad at predicting what we will want when we are in less healthy states (case-in-point: high spinal cord injury and life satisfaction). So, whether you or I shudder (and I do) at the thought of being in an LTAC, the same may not be true for the future “me.”

In my estimation, I see the ways forward as:

• Modernizing advance care planning
• Thoughtful goals of care conversations
• Physicians hearing the phrase “do everything” as an emotional statement to be explored and not a medical directive
• Medical team’s taking ownership of tailoring medical options (pdf) to those that meet the patient’s/family’s goals
• Continued progress in developing the field of palliative care and bringing it to where people live

Joann Faryon says “I walked away thinking, ‘I don’t know what I’d do if I were [these families].” I’d like to think that I do, but, as I point about above, I’ve got a good chance of being wrong.

In reviewing these excellent articles and accompanying website, I was most struck by (as a committed logophile), the power of a certain phrase. I’ll let the article speak for itself:

“The first time Steve hears the words life support in connection with Rafaela is during our third interview. “I have never heard a physician, I’ve never heard a nurse, I’ve never even heard a family member on subacute use the term life support. I think we all kind of know it in the back of our minds. We just don’t want to acknowledge it,” Steve said.”

“The mind is powerful. It protects you.”

Kyle P. Edmonds, MD is a palliative physician with a special interest in social media, health system reform and clinical bioethics. Follow @kpedmonds

Image credit: Screenshot from http://impossiblechoice.org/

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Watching the news of the tremendous amount of snow falling in Buffalo and Western New York this week, I could not help but think about the challenge facing patients and families served by local hospices. Thankfully, there was some warning about the enormity of the snowfall coming which provided time for hospice organizations to call their patients to check on medication and oxygen supplies.  I spoke Thursday morning with Dr. Beth Calkins, a hospice physician with Hospice Buffalo. "I wish you would have written a story about emergency preparedness two weeks ago. This is a really tough situation for our patients and families." As many news outlets highlighted, some in the Buffalo area were either confident they had seen 'bad snowstorms' in the past, or potentially dismissing the unbelievable forecasts as unlikely and part of weather forecasting hype. Thankfully most people prepared ahead of time, but what do you do about someone who is frail and on hospice?

Dr. Calkins praised the work of the nurse managers who called each patient ahead of the storm to verify important areas like safety, medications and emergency plans. "We are calling our patients every day, more if needed.  But new issues arise when a patient suddenly has severe symptoms or begins to enter an active dying phase." She noted calling several pharmacies to find many of them closed. The two she found open (with pharmacists stuck there when they could not get home) were able to fill medications, but the patients nor families could not necessarily get to the pharmacies!

"What about walking?", I asked.  "Impossible in many areas because the snow is too deep and there are no safe areas to walk," she replied. "We have some of our emergency services using snowmobiles. We are really appreciative the ambulance service has given priority to our patients when needed."

Imagine being greeted by this when you head out to get the milk! More crazy #snow scenes in NY state #Buffalo... pic.twitter.com/GYjnwKKyEx

— Simon King (@SimonOKing) November 21, 2014

Another issue hospices may overlook when transportation is cut off because of natural disaster is the complications of after-death care and safe removal of someone who died. Since funeral homes are unable to arrive, ambulance service may be the only option, which is not a customary choice when you think about a death on hospice.

Most of the staff have been handling crises by phone, but the staff are not immune to the effects of the storm. "Both our patients and our Team 6 staff live in the south Buffalo area which was hit hardest." If staff cannot get out of their homes, they are not going to be able to get to patients obviously. In addition, they may be primary caregivers for children or adult family members in an already stressful situation.

Dr. Calkins is hopeful the upcoming warm weather will provide relief from the snow, but is aware the risk of flooding remains high, which may put the integrity of houses at risk even more than the potential of a snow-collapsed roof.

When these natural disasters hit, the attention almost always focuses on hospitals, fire and police, but it is critical to support home-based medical services as well. A big thank you for the strong work by all hospice and home health professionals in Buffalo.

Here are some pictures provided to us from Hospice Buffalo:






Check out the past stories in our Disaster Preparedness series:
Iowa Floods Affecting Hospice Care
Hospice Care in the Aftermath of Hurricane Ike

Video Credit: Drone Footage Storm Day 3 by James Grimaldi via YouTube
Photo Credit: "Buffalo, NY" jilleatsapples via Compfight cc
Photo Credit: All other images courtesy of Hospice Buffalo - All Rights Reserved

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Energy and enthusiasm permeated all aspects of the 2014 CAPC National Seminar. There was a noticeable sense of pride in the advances of palliative care over the past year accompanied with an excitement for new opportunities to expand the field. Because of both the breadth and depth of the seminar curriculum I will only provide comments about the plenary sessions and conclude with a few thoughts on the conference as a whole.

Plenary Sessions

Diane Meier opened the seminar by expressing gratitude for the work of palliative care professionals across the country. Using the Diffusion of Innovation Theory, Dr. Meier proceeded to make a cogent case that palliative care is past the tipping point and sits on the precipice of being institutionalized such that palliative care will be seen as an indispensable and expected component of health care delivery in all settings moving forward. She supported her case by referencing a variety of accomplishments including but not limited to:

1. palliative care as an established field with a high prevalence of palliative care teams in hospitals; 
2. the increasing number of formal certification and accreditation processes in palliative care; 
3. the growing public and professional awareness about palliative care. See Being Mortal as one example; 
4. the increased number of palliative care training options through entities like ELNEC, Vital Talk, and CAPC; 
5. additional evidence on the benefit of palliative care for patients and families; 
6. supportive policy and enhanced advocacy. 

Specifically, through the ACA incentives for quality and high value care have never been more important and because palliative care has been shown repeatedly to be both high value care and quality care, payers are noticing. See Improving the Care of Serious Illness Through Innovative Payer-Provider Partnerships.

David Weissman used his plenary to encourage palliative care professionals to be educators. While many palliative care teams may balk at opportunities to educate due to a lack of time, Dr. Weissman encouraged teams to find creative and meaningful ways to educate. He provided examples on ways to integrate education informally into clinical practice. Moreover, Dr. Weissman spoke to maximizing the learning experience through thoughtful and intentional approaches to defining the title of your presentation, writing objectives and selecting your educational format. Additionally, Dr. Weissman referenced tools to aid you as an educator such as the End of Life/Palliative Education Resource Center and Fast Facts. Later in the seminar, CAPC recognized Dr. Weissman with the CAPC 2014 Innovation Award for his substantial and meaningful contributions to the field of palliative care.

Sister Carol Keehan, President and CEO of the Catholic Health Association of the United States offered effusive praise for the work of palliative care professionals during her session. She described the integration of palliative care services in CHA member health systems while repeatedly noting the importance of high quality care for the seriously ill.

Graeme Rocker from Dalhousie University discussed the program INSPIRED Approaches to COPD: Improving Care and Creating Value. Dr. Rocker described this outreach program for patients and families living with advanced COPD and demonstrated how the program resulted in improved clinical outcomes for patients as well as a reduction in ED visits, hospitalizations and hospital days. During his presentation a family member who benefit from the program described her experience and the importance of palliative care professionals.

Former Senator Bill Frist offered the final plenary session. Dr. Frist described the role of the private sector in scaling palliative care. Dr. Frist highlighted the private sector’s ability to move quickly, provide capital to programs and experiment with new models of care delivery. Furthermore, he articulated the value palliative care brings to the private sector as incentives for quality increase. He concluded his presentation by demonstrating how Aspire Health is working with the private sector to respond to the needs of the seriously ill.

Conclusion

On the whole, the 2014 CAPC Seminar offered the over 900 attendees the tools to address issues that are integral to the development and sustainability of high quality palliative care programs. Intensive and concurrent sessions offered a wide range of expertise including but not limited to program development, clinical models, quality metrics, leadership, developing business plans, palliative care across systems, inpatient, outpatient, clinic based and home palliative care, palliative care in the ICU, emergency department and long-term care facilities, reaching out to payers, and specific populations.

CAPC will be a membership organization beginning in 2015 and attendees got the first look at some of the benefits of membership which includes online curriculum, virtual office hours, and web conferences.

The conference offered adequate time and setting for networking opportunities and included “office hours” so attendees could work directly with faculty experts. The #CAPCSeminar14 received much attention from a thoughtful and active community on Twitter. It’s well worth searching the hashtag to see quotes, photos, articles, and references.

Undoubtedly, participants will use the content from the conference to launch new or enhance existing palliative care programs across the country.

Turner West, MPH, MTS is an educator and administrator at Hospice of the Bluegrass in Lexington, KY. He is married has a 16 month old with a “ask me about palliative care” bib and an 8 year-old St. Bernard.

Image Credit: Palm Trees Gerald Harriman (@hpmsudo) via Twitter
Image Credit: Conference Hall Ian Kwok (@kwokytalky) via Twitter

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It started with a Tweet. Back in October 2013, my Twitter friend and palliative care colleague Becky Baines tweeted from the Help the Hospices conference in the UK:

@Becbaines how about a twitter journal club for palliative care? Would there be enough people? #hospiceconf
— Katherine Sleeman (@kesleeman) October 22, 2013

I am happy to report: there were.

Four months and several emails and tweets later, #hpmJC was born on the 25th February 2014. For our first journal club, we chose this BMJ paper¹ on the safety of opioids and benzodiazepines in advanced COPD. Over thirty global participants (including palliative care and respiratory medicine specialists, research scientists, and data experts) from at least 3 continents contributed to the debate at #hpmJC, posting more than 200 tweets over the course of an hour.

As the chair of the inaugural #hpmJC, I was amazed by the enthusiasm, the depth of discussion, and the unexpected tangents that led from the main discussion. It was exhausting trying to keep track of all the threads but incredibly fun and rewarding.

We want #hpmJC to be of interest to #hpm practitioners and researcher globally. Therefore we will have a ‘pass the baton’ format for the chair and we are excited by the thought that the baton will be passed far and wide, with the times of #hpmJC varying accordingly. We only suggest that the paper discussed should be open access, and ideally it should be applicable not just to specialists in palliative care, but have messages for generalists delivering end of life care too.

All of the articles we have discussed so far as listed below.  Some higlights from past #hpmJC include: the Palliative Medicine paper² on the imminence of death amongst hospital inpatients. The study, carried out in 25 Scottish Hospitals, showed that almost 30% of hospital inpatients died during the subsequent year, and highlighted the need for end of life care in the acute hospital setting to be ‘everybody’s business’. The paper generated a huge amount of media interest, and we are thrilled that the first author of the paper, Prof David Clark (@dumfriesshire), joined us for the journal club. He has also written a blog about the paper here³. So, you never know if you join us to hear more about important research, you may get the rare opportunity to question the author directly.

Hope to see you at #hpmJC! The next one is scheduled for Nov 17th 7am NYC, 12n London, 11pm SYD on Identifying changes in the support networks of end-of-life carers using social network analysis!

Katherine Sleeman, BSc, MBBS, MRCP, PhD
Clinician and academic in palliative medicine, Cicely Saunders Institute, King’s College London

Follow @kesleeman
Follow @hpmjc
Tweet #hpmJC

1 http://www.bmj.com/content/348/bmj.g445.pdf%2Bhtml
2 http://pmj.sagepub.com/content/early/2014/03/17/0269216314526443.full.pdf+html
3 http://endoflifestudies.academicblogs.co.uk/how-many-people-in-hospital-today-will-die-within-a-year/

#hpmJC Events so far:

25th Feb led by Katherine Sleeman Follow @kesleeman
Safety of benzodiazepines and opioids in very severe respiratory disease: national prospective study http://www.bmj.com/content/348/bmj.g445

17th March led by Catherine Walshe Follow @cewalshe
Associations between palliative chemotherapy and adult cancer patients’ end of life care and place of death: prospective cohort study http://www.bmj.com/content/348/bmj.g1219.full.pdf+html

4th April led by Sarah Russell Follow @learnhospice (paper was made open access by Pallaitive Medicine for the journal club, and lead author @dumfriesshire joined in too Follow @dumfriesshire )
Imminence of death among hospital inpatients: Prevalent cohort study http://pmj.sagepub.com/content/28/6/474.long

5th May led by Elissa Campbell Follow @elissa_campbell
Interventions to encourage discussion of end-of-life preferences between members of the general population and the people closest to them - a systematic literature review http://www.biomedcentral.com/1472-684X/12/40

9th June led by Catherine Walshe Follow @cewalshe
Patients’, family caregivers’, and professionals’ perspectives on quality of palliative care: A qualitative study http://m.pmj.sagepub.com/content/early/2014/05/09/0269216314532154.abstract

29th September led by Ollie Minton Follow @drol007 (Pallimed post by Ollie Minton on this Journal Club)
Diagnosing dying: an integrative literature review http://spcare.bmj.com/content/4/3/263.full.pdf

17th November led by Libby Sallnow Follow @libby_sallnow and Publich Health and Palliative Care Intl Follow @PHP_care  - Facebook Event Reminder
Identifying changes in the support networks of end-of-life carers using social network analysis http://m.spcare.bmj.com/content/early/2013/11/19/bmjspcare-2012-000257.full?g=w_spcare_open_tab&fb_source=message

Image Credit: Animal Stock Photo

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What bird is with you at every meal? A swallow!

By Alex Smith @AlexSmithMD and Sarah Stranberg, Speech Pathologist, University of Pittsburgh Medical Center

Consider the following vignettes, common in both geriatrics and palliative care:

1. A 93 year old woman with advanced dementia is admitted to the hospital for the third time in the past 6 months for an aspiration pneumonia. The admitting team orders a speech and swallow consult.
2. A 68 year old man suffers a massive ischemic stroke. After 15 days in the ICU he has recovered minimal function. A tracheostomy (trach) is placed so that he can breathe on a ventilator through a hole in his neck. The neurology team requests a speech and swallow consult to justify likely need for PEG (a hole into the stomach for artificial feeding through a tube).

In each of these cases, my initial reaction has always been “Noooooooooooooooooo!!!!! Don’t place the speech and swallow consult!” I worry that the consult will place the patient on an inevitable path toward a PEG tube, without assessment of goals, values, and alternative approaches such as hand feeding.

However, at the annual Foley retreat of the National Palliative Care Research Center , Bob Arnold suggested a different approach. He has been working with his speech and swallow colleagues to develop a palliative approach to patients with difficulty swallowing.

Here are some of the changes:

Old speech and swallow recommendations:

• Unsafe for feeding
• NPO. Needs feeding tube

New speech and swallow recommendations:

• High risk for aspiration
• Assess goals and values related to feeding and nutrition

This is a great idea, and something we should try more broadly around the country. For more detail, attend the workshop at the HPNA/AAHPM Annual Assembly on “palliative dysphagia” Saturday at 1:15.

Alex Smith normally blogs at GeriPal. This post appears first on Pallimed as part of a wager on the World Series. For each game lost by the home team (SF Giants for GeriPal, KC Royals for Pallimed), the losing blog must submit a post to the winning blog.

Photo Credit: jurvetson via Compfight cc

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Ziad Obermeyer et. al published a large, rigorous study in JAMA this month (Open Access!) that provides cost and aggressiveness data to support the use of hospice for poor-prognosis cancer patients who stop cancer related treatments. The bottom line of the study is:

The choice to enroll in hospice definitely decreases cost and aggressiveness of care in patients with poor-prognosis cancer who are no longer receiving disease directed therapies.

This finding is consistent with Kelley et al’s 2013 study of hospice length of stay showing that hospice enrollment, for all diagnoses, saved Medicare dollars during all length of stay (LOS) periods measured, with the greatest benefit in patients enrolled 8-30 days($5,040-6,430). All LOS groups also had associated decrease in hospitalizations, ICU days, hospital deaths and hospital readmissions.

The Obermeyer study significantly confirms that this benefit also exists for hospice utilization in advanced cancer. So let’s break it down so that we can be sure to use/apply it appropriately:

Association Between the Medicare Hospice Benefit and Health Care Utilization and Costs for Patients With Poor-Prognosis Cancer

Background: People with cancer historically have been the largest recipients of the Medicare Hospice Benefit (per NHPCO, 37% of all beneficiaries in 2013) but their LOS is shorter than the general population, having the highest rates of hospice stay less than 3 days. Short hospice LOS and increased intensity of care outside of hospice spurred this research group to explore health care utilization and costs in the poor-prognosis cancer population.

Population:

• Medicare fee-for-service beneficiaries with poor-prognosis malignancies who died in 2011 after a full year of Medicare coverage were included.
• ICD codes for pancreatic, lung, brain, metastatic or ill-defined malignancies, or hematologic malignancies that are relapsed or not in remission.
• Large study: 36,330 patients in the final matched cohort from an initial sample 86,851 patients.

Matching: (see the study for the complex details- this is significantly simplified)

• Poor-prognosis cancer patients who enrolled with hospice were matched with those who did not
• Coarsened exact matching variables: Place of residence, age, sex, time from first poor-prognosis cancer diagnosis to death
• Compared utilization before and after hospice to try to determine what may have happened if the patient had chosen hospice.
• Matching did not include: Objective performance status, caregiver status, availability of hospice or other palliative care services
• Pairs were not included if either member of the pair utilized cancer directed treatment (defined as chemotherapy or cancer related surgery) during the exposure period (so, only people who stopped all cancer directed treatments were included in the study!)

Outcome Measures:

Primary: Health care utilization during hospice enrollment or the equivalent period of time in non-hospice patients, including hospitalization and ICU frequency, number of inpatient procedures and deaths in hospital or skilled nursing facility. Did not include death in assisted living or inpatient hospice.

Secondary: Total cost, including beneficiary payments, Medicare payments and third party payments for inpatient care, hospice costs, physician costs, non-institutional provider payments. Did not include medications, personal care or non-Medicare paid services.

Results:

• Median time until death after diagnosis of poor-prognosis cancer was 13 months.
• 60% of patients received hospice care.
• Median hospice LOS 11 days, less than 6% had a LOS of more than 6 months.
• Patients who chose hospice
• • Spent less time in the hospital
  • Spent less time in the ICU
  • Had less inpatient procedures billed.
• Death in a facility (hospital or skilled nursing facility) decreased: 14% versus 74%
• Cost of care in the last week of life decreased: $8,421 versus $3,892, - more than 50% difference
• Costs were decreased in all hospice LOS periods except for the 2% of beneficiaries enrolled more than 1 year
• The greatest cost savings: LOS 5-8 weeks which decreased cumulative costs by 24%
• Cumulative cost for the last year of life* decreased: $71,517 versus $62,819, a 12% difference
• • *This is difficult to interpret since patients had varied hospice lengths of stay, with many patients enrolled in hospice only 3 days prior to death, this number hardly seems reflective of a hospice effect. And some of them were not even diagnosed with their cancer for the full year, resulting in spuriously lower costs.

Author's Conclusion:

In this sample of Medicare fee-for-service beneficiaries with poor-prognosis cancer, those receiving hospice care, compared with matched control patients not receiving hospice care, had significantly lower rates of hospitalization, intensive care unit admission and invasive procedures at the end of life, along with significantly lower health care expenditures during the last year of life.

Concerns/Thoughts:
Factors that influence patients’ decision to enroll in hospice services were not addressed. They may include:

• Caregiver availability - Prior to the exposure period, hospice patients in the sample used more home health and non-hospice patients used more skilled nursing facilities. I would argue the increased use of skilled nursing may reflect inadequate resources for in home care. Patients in this study, like many patients I’ve care for, may have been faced with the decision to enroll in hospice OR get their skilled nursing home stay paid through Medicare. If care giving is an issue, they may have chosen ECF instead of hospice. This increases costs and moves site of death to the ECF. If there were better payment options for in-home custodial care, patients may choose to stay at home, with hospice, instead.
• Hospice/palliative care availability - we don’t know why patients did not choose hospice. They were all clearly eligible. Since available services/facilities were not described, we do not know if the availability of hospice & palliative care influenced the propensity to enroll in hospice. This may be particularly relevant to patients living in a rural community where there is greater variability in services despite the study attempt to match place of residence.
• Data from personal care or inpatient hospice facilities was not available - Therefore this data may miss significant caregiving costs and frequency of deaths in facilities other than hospital or ECF.

Other interesting findings:

Patients who were selected for the study, who did not received cancer directed therapies during the exposure period, lived in zip codes with higher incomes and had a shorter median time from diagnosis to death. This could be further investigated- maybe these factors influence patients’ decisions to stop cancer directed treatments?

My Conclusion:

Care for people who chose hospice after stopping cancer treatments cost 12-50% less than care for people who didn’t and less of them died in facilities, despite median hospice LOS of less than 2 weeks.

Other Takeaway Points:

• Although cancer comprises the largest group of hospice diagnoses (37%), people with poor-prognosis cancers have shorter hospice length of stays than overall population (11 days versus 19 days)
• When sharing this study with others, don’t forget that this cost-avoidance occurs in the setting of care that is proven to increase patient and family satisfaction, decreased symptom distress and improved outcomes for caregivers. (Even the most curmudgeonly administrator likes that combination!)
• These data cannot be applied to:
• • Young patients who have private insurance
  • Patients who are receiving any chemotherapy or cancer related surgeries, including those who receive oral targeted agents or who (presumably) have palliative surgeries for bowel obstruction, cord compression etc.
• This study cannot definitively separate whether the hospice services, or the propensity to choose hospice services has the greater effect, so we don’t know for sure if hospice in a “Concurrent Care” model would have similar results.
• Although consistent with other studies, these findings cannot be applied to non-cancer patients

Studies like this are very difficult to do and cannot control all variables, so kudos and thank you to all of those involved in this project for contributing such great data to the field!

Image Credit: US Postal Service
Image Credit: Unknown infographic from Pinterest

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I have heard quite a bit of good feedback and press about the ASCO/AAHPM palliative oncology meeting in Boston at the end of October (See Pallimed Review One and Two). And I agree; Bravo! Having attending the meeting as a hospice medical director and somewhat retired palliative medical oncologist, my reflections of the meeting are more complicated. Indeed, there was excitement and energy about the possibilities, in clinical and research arenas alike. Especially among physicians, young academic physicians in particular.

For those of us who have migrated around this landscape a bit and have seen slow and fast changes over the last decade, the excitement and energy were palpably tempered by some harsh realities. Those realities really distilled themselves around Dr. Arif Kamal’s (Duke University Palliative Care Division) excellent oral presentation on Saturday October 25: “Prevelence and predictors of burnout among specialty palliative care clinicians in the United States: Results of a national survey”. The results were interesting and straightforward, and not surprising to me: Physician burnout in palliative care is higher-over 62%-than the burnout rate reported in medical oncology-45%-according to a large national survey of over 1,200 hospice and palliative care clinicians*. And over 50% of palliative care physicians expect to leave the field in the next 10 years.

Some may be interested in the subgroup analyses and predictors, but I believe the important message in in the forest, not in the trees. I talked to Dr. Kamal (a native Missourian like me!) and a number of other physician and nurse professionals at the meeting about the stresses and strains of palliative care practice with teams in the oncology and non-oncology settings and in inpatient and outpatient settings. The messages I received were fairly clear-cut and stark. The field is moving forward. There is progress but much work yet needs to be done to serve the needs of the patients and families and the health care system. There aren’t nearly enough clinicians doing this work and being paid to do this work. Hospitals and health care systems are reaping the benefits of the teams (quality improvement, patient satisfaction, and dramatic cost savings/avoidance), but not supporting the teams nearly enough with needed staffing or infrastructure. It isn’t only that programs can’t find the people to fill the positions needed; it is that the hospitals and systems are not creating/funding the needed positions. According to Dr. Kamal, other sources of burnout noted by those palliative care clinicians surveyed include constant justification of our worth to other clinicians and administration (not as much of an issue for oncology teams), lack of mentorship and colleagues, and the emotional toll of the work.

So...the work gets done by hard-working, mission-driven, passionate, committed physicians and nurses and advance practice nurses and social workers and chaplains, but they work very long days (and nights) often more than 5 days a week without the administrative support they need to work smarter and more efficiently and to get them more help. And often they get penalized for working overtime! Interestingly, these same forces are in effect in the medical oncology world, for both hospital-owned and the less common private practices. Profits may be going down somewhat as value goes up, but the system is squeezing the value/profit out of PC programs and Oncology practices,and not paying the price of staffing those hospital programs and clinics with the physicians, nurses, and other clinicians and staff to assure the highest quality of care and job satisfaction for these committed professionals.

Consequently, as we move palliative care more into the ambulatory setting, and more into the oncology setting in a truly integrated way, and discuss primary palliative care vs. secondary palliative care, we MUST engage with the directors and CMOs and CFOs and COOs of these programs.  Engage by sharing the burnout data and stories with organizational leadership and also share the quality and fiscal benefits they are receiving now, could receive more of in the future, or could lose to burnout if we don’t take care of ourselves and our teams while we do this critically important work for our population and our health care system. As I noted in my tweet after Dr. Kamal’s presentation:

#pallonc: too much work, not enough support, need to say NO more often, set personal and team limits, share the pain!
— Clay Anderson (@AnglerMD) October 25, 2014

What we do is way too important to have us fall on the sword and then leave no one else to do it. As Dr. Kamal notes in personal communication: “In the business world, we’d be called disruptive innovators. But in medicine, we’re often just referred to as disrupters, interrupters, misfits, etc.”. Let’s move forward with passion, but with limits and firm negotiation befitting of our value to our patient and families, and our health care system.

Clay M. Anderson, MD, FACP, FAAHPM is the Medical Director for NorthCare Hospice and Palliative Care in Kansas City, MO.  He is also a fantastic angler who can be found on Twitter at @AnglerMD.

(*You may have seen this survey on Pallimed and taken it yourself! This data is about you! - Ed.)

Photo Credit: Unknown

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by Ollie Minton Follow @drol007

Having come to the end of a medical education certificate I now know the value of reflection to consolidate the learning. However in the chaos of the real world and work and other things weeks go by without any chance to do so. One of the reasons I like using Twitter so much is the speed at which it moves and the diversity but it does not give you a chance to delve more deeply into any given theme. I am however committed and passionate about what I do as a consultant in palliative medicine both clinically, academically (when the chance arises) and through teaching (part of my day job).

I had the pleasure of being asked to host the September palliative medicine journal club (@hpmjc) run by Katherine Sleeman (@kesleeman) of the Cicely Saunders Institute London UK (@CSI_KCL). On this occasion, we had hijacked the very well established #hpmglobal slot hosted by Jim Cleary (@jfclearywisc). Despite printing off and yes actually reading in depth my chosen paper "Diagnosing Dying - an integrative literature review" – open access so everyone could read the full text – I felt suitably under-prepared.

"Piled Higher and Deeper" by Jorge Cham www.phdcomics.com

I had organised my day and ward round to be able to do this but knew I was relying on a National Health Service computer (not the most up to date in the world) and was denied access to Tweetdeck or any other service that would screen and automatically hashtag my tweets. My efforts to produce multiple drafts had also been defeated by a recent twitter software upgrade. Nevertheless I felt I could be in charge for the hour (or at least direct the flow).

I was really pleased to see the global nature of the chat rapidly develop. There were inputs from people I followed and know in real life but also so many others I could not have predicted from across the world. In addition, there were also contributions from relatives and patient groups.

The discussion focused on the complicated areas of diagnosing dying and highlighted some cultural differences. We all agreed on the more active dying phase but it was the preceding areas that were trickier to judge. There was no overall agreement other than the need to educate other professionals on illness trajectory, communicate clearly with everyone involved and acknowledge uncertainty. While we as palliative care professionals are familiar with that – involving others may not be straightforward. I think we all felt that the review did not offer specific guidance on how to move forward.

Afterwards I was exhausted – the level of concentration required, not being face to face and avoiding the temptation to be too school-master like - not that I had any tools to use beyond the obvious. While perhaps not surprisingly more questions than answers were generated and the ubiquitous “more research is needed” formed a part of the conclusions it was a great discussion. I felt the best conclusion I could ask for was in this tweet:

@drol007 Thanks for v interesting #Hpmjc with #Hpmglobal. input from Uk, USA, Australia, KSA, Rwanda, Burundi, Turkey. Did I miss others?
— jim cleary (@jfclearywisc) September 29, 2014

A complete summary of our chat is here hosted by Symplur.

No doubt there is another journal club planned –  "Identifying changes in the support networks of end-of-life carers using social network analysis." on Monday November 17th 12n GMT; 11p SYD; 7a NYC -  I will be taking part. I am just glad that is all I will be doing….

Dr Ollie Minton, PhD, FRCP is a locum consultant and honorary senior lecturer in palliative medicine. Outnumbered 3:1 by ladies at home and by a worse ratio at work I survive as a consultant in palliative medicine research cancer, survivorship, and fatigue

Add the next #hpmJC to your Google Calendar: 
Add the next #hpmJC to your Apple/Outlook Calendar (iCal format)

Twitter accounts mentioned:
Follow @hpmjc
Follow @drol007
Follow @CSI_KCL
Follow @jfclearywisc
Follow @kesleeman
Tweet #hpmglobal

Image credit: Jorge Cham Reprinted with permission All rights reserved 

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In inpatient pediatric palliative care there is one question that often plagues most practitioners: how do we start? Like other practitioners in hospice and palliative care, we want to build a relationship that will include tough questions and uncomfortable topics, but how to get there with children is often a bit intimidating, even to seasoned practitioners. Here is how our team strives to build a relationship:

• First, we introduce ourselves and explain what palliative care is. Our team will usually begin by explaining that we are “an extra layer of support” that works with families dealing with serious illness or conditions.  At times, we may even put the patient into context: “we tend to see the sicker children in the hospital like your child”.  We share that we are here to help with clear communication, symptom management, and support during any decision-points that may arise.

• Then we talk about our specific roles and how they overlap.  “Our physician will be looking after your child’s physical comfort, making sure that pain and symptoms are managed.  Our nurse will help with some of that, and can also offer information about what is going on medically.  Our social worker will be focusing more on your social and emotional comfort. Are there large worries weighing on you in addition to your child being in the hospital? Each member of the team can help communicate about each of these issues, as our roles somewhat overlap.”
  

• Next we ask about their experience.  As Dr. Justin Baker from St. Jude’s says in his presentations, “how has this experience been for you”?  We listen to the story of the diagnosis and illness course and then again, ask about the experience.  What has it been like dealing with all of this?  This gives them a chance to connect and humanize the patient.

• We ask to look at pictures of the child and the family before this hospitalization.  As Dr. Laurie Hicks from Levine Children’s Hospital puts it, “this lets me know what we are working towards”.   

• Finally, we try to offer a specific way that we can help the family and/or patient.  This can be offering to find financial assistance, making a suggestion about something that other parents have found helpful, or offering to “be the bad guy” with visitors who overstay their welcome.  I usually hand parents my card and tell them that, though I am not available 24/7, my voicemail is.  If they think of a question or fear that they want to share or they have some worry or anger they need to get off their chest, they can call and leave me a message.  Even if they need to express their anger, they can do that there (though no one ever has).

Once we have a foot in the door, it often takes two more elements to connect with families: observation and timing. We talk regularly to our chaplain, child life specialists, and music therapist who communicate regularly about how the patient and families’ courses are ebbing and flowing. We watch body language, grooming, and habits for changes that may indicate a shift in how someone is coping that day, and we try to share these observations with patients and families: “I noticed that your expression looks sadder today than it did last week . . . what’s that about?” Like with other populations, working with pediatrics is about creating a human connection with patient and family. However, sometimes that takes working through one’s own discomfort and trusting that your teammates will help you get (and keep) your foot in the door so that, should a truly difficult conversation come up, you have the family’s trust that you will provide them with honest, caring information and guide them based on priorities that they have identified.

 Allie Shukraft, LCSWA, MSW, MAT, is a pediatric palliative care social worker for Carolinas Healthcare System in Charlotte, NC where she loves reading and walking with her dogs. Although she is still learning how to use it, you can find her on Twitter (@alifrumcally).

Photo credit: Lynna' Alvarnas, with permission.