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 Foundation) 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 ·

Monday, November 27, 2017

Documentation Design: Palliative Care Notes in the EHR Era

by April Krutka (@April918) and Christian Sinclair (@ctsinclair)

DOCUMENTATION...who knew this one word could provoke so many emotions among health care clinicians? Say this word, and you will hear stories of triumph and defeat. From universal required elements in the admission history and physical, progress notes and discharge summaries to the specialty specific language of advance care planning and pain assessments, there is a constant pressure to get all the pieces to fit correctly. Moving from analog to digital offered much hope, but also new problems. Before we even start typing or dictating a new note, most of the success or failure lies in how we design our notes from the start.

Standardized documentation promises clinicians consistency, data tracking, opportunities for quality improvement, and inclusion of essential elements of a specialty. If a template is built well, it should save time and impact the clinician experience and patient care in a meaningful way. Designing templates can be like walking a tight rope. Fall on either side, and it can lead to burnout and frustration by those using the templates.

There are many stakeholders who have a vested interest in the components of a clinical note. It is used by many different entities for different reasons: the billing department wants to submit the correct bill, the clinician/team needs to communicate clinical plans, the patient wants to be assessed accurately and without stigma, payors want to make sure they are paying for value, risk management stresses timeliness and compliance, health care administration wants to make sure all of the above are being done well. We are asking a lot of our notes and the templates that guide them. And for tools like these that are used millions of times daily, there is not much research or quality assessment involved in these vital communication platforms.

Palliative care documentation and templates also present unique challenges, as palliative care is provided in an interdisciplinary setting, tells personal story outside of standard medical issues and must relay the overriding goals that drive the creation of a medical plan. If we are successful, we are able to tell a human story, effortlessly meet billing standards, communicate seamlessly with all parties involved, save time, and track the spectrum of suffering or comfort and quality metrics.

This is the first of many posts over the next few months as we prepare for our presentation "Documentation Design: Palliative Care Notes in the EHR Era" in Boston at the Annual Assembly of Hospice and Palliative Care in March 2018. (Psst it is Friday, Mar 16th at 3pm, make sure you come!) We are very interested in hearing about your challenges and successes!

We are kicking it off with a #hpm chat, Wednesday Nov 29, 2017 at 9p ET/6p PT. We will post here and on the AAHPM Connect Forum to seek your input to help make our talk meet your needs. (Sign up on to get alerts to upcoming chats!) Topics we will be covering in the chat include: Templates: love them, hate them, what works best for you? Should we consider different types of notes for different reasons or make them all try in fit in our usual current note types? How can we make the EHR work for us and not the other way around?

April Krutka is a palliative care physician at Intermountain Healthcare in Utah working on the Cerner EHR. Christian Sinclair is a palliative care physician at the University of Kansas Health System working on the EPIC platform.

Monday, November 27, 2017 by Christian Sinclair ·

Monday, November 13, 2017

LGBTQ at the End-of-Life: Needs and Challenges

By Vivian Lam

Holistic care is essential in the mission to fully meet a patient's needs. And a holistic perspective is the backbone of end of life and palliative care--it's the basis of having an interprofessional team that acknowledges that quality of life is multifaceted, and lives are diverse. But getting to know a patient enough to be able to be "holistic" can be difficult. And in the case of LGBTQ individuals, getting to know the patient as a whole is not only all the more important—it’s integral.

According to a 2016 Gallup survey, 4.1% of U.S. adults openly identify as LGBTQ, or around 10 million adults. Of that 4.1%, 2.4% are Baby Boomers (born 1945 to 1964), and 1.4% Traditionalists (born 1913-1945). And in order to be able to provide holistic care to LGBTQ patients, it’s important to recognize that LGBTQ individuals have specific medical, psychological, and social needs. They are more likely to experience mental health problems, due to a number of social stressors including prejudice, stigmatization, anti-gay violence, and internalized homophobia. Many are susceptible to depression, suicide, and substance abuse. And many face isolation, and difficulty accessing resources and appropriate care.

On the flipside, LGBTQ individuals are more likely to have an advance directive completed as a legal safeguard to their wishes, and are likely to have “chosen” or “lavender” families and strong community ties, and highlight the importance of including these individuals in developing a support system.

To begin to provide holistic care to LGBTQ patients, it is important to have basic cultural competency on LGBTQ people and their historical and contemporary experiences in healthcare. Though some strides have been made in incorporating LGBTQ cultural competency in healthcare training, much can be done in executing these findings in practice.  And it is very important to remember that small steps can quickly translate into big steps—starting with the basic challenges that LGBTQ patients face at the end-of-life.

Anticipating discrimination, and going “back into the closet”

Though strides have been made in fostering acceptance of and earning equal rights for the LGBTQ people, historical trauma and ongoing discrimination strongly color LGBTQ lives today. And for LGBTQ elders who lived in a period of less social acceptance, and harbor a lifetime of discrimination and negative healthcare experiences, an expectation of prejudice on the basis of their sexuality may not only detract from holistic care, but also prevent them from obtaining care in the first place.

Some feel that hospice and palliative care are not services available that are available to them, and will not understand or meet their needs as they relate to sexual orientation or gender identity. Some anticipate receiving worse treatment than their straight and gender-conforming peers. And some feel that they must go “back into the closet” in order to protect themselves from the hostility of hospital or assisted living staff and patients. And transgender individuals’ wishes to be recognized and die as their preferred gender are often disrespected.

Disclosure of sexual and gender identity can aid in providing sensitive and appropriate care, and augment the patient-provider relationship. It can also help identify potential challenges and ways to better support a patient and their loved ones. Though disclosure is ultimately up to the patient, providers need to actively foster an environment where the patien
t feels comfortable enough to disclose their identity.

Best practices for creating a safe space:

  • Place a sign that signals that your office is LGBTQ-friendly, and display brochures that are relevant to LGBTQ-health issues.
  • Review your literature and forms to ensure they have inclusive language and questions.  Add a transgender option alongside “male/female” in your intake forms.
  • Do not assume a patient’s sexuality or gender identity, and do not force a patient to disclose their sexual or gender identity if they are uncomfortable. Instead, introduce yourself with your preferred pronouns, and ask about theirs. Do not assume that a trans patient desires or has undergone surgical or hormonal transition. Make it clear that you are comfortable with their identity, and are willing to learn how to support them through identity-specific issues.
  • Try having a conversation, if they are comfortable, about their fears and needs. Be aware of the language you use, and ask about their preferred name and gender pronouns.

Ask questions like:
“Who are the most important people in your life?”
“Do you have a significant other?”
“Are you in a relationship?”
“Do you live with anyone?”
“Tell me more about yourself?”

Family, bereavement, and legal challenges

Isolation and “non-traditional” family status factor greatly in the delivery and facilitation of care. LGBTQ individuals are more likely to be single, less likely to have children, and more likely to be estranged from their birth families. Many have “families of choice” (also called “lavender families”), composed of close friends and support groups. But for many LGBTQ elders, these chosen families may be threatened by aging and illness, and face trauma from loss in the HIV epidemic in the 1980s and 1990s.

Many feel concern that their partner might not be recognized or be able to serve as their durable power of attorney for medical and end-of-life decision-making. Those without a legal partner or paperwork specifying their wishes face having family members they may not have spoken to for years making decisions on their behalf. For LGBTQ individuals, having a power of attorney in place is top priority.

And the bereaved are vulnerable to being left out of the picture altogether. Non-registered surviving partners are denied family leave and bereavement benefits, automatic inheritance jointly owned property, and may lose the right to determine funeral plans. Many experience disenfranchised grief by not being recognized as needing support, and often carry a greater care burden due to late access to care.

Best practices:
  • Ask who the most important people in their life are
  • Ensure that their partner is recognized as such and feels supported.
  • If they bring someone into the meeting that they introduce as a close friend but may in fact be their partner, emphasize that you are comfortable with their identity and are willing to support them.
  • Address legal concerns 

 A paucity of research and training

There are large gaps in the literature in regards to providing care for LGBTQ elders. There has been a general “invisibility” of LGBTQ older adults, due to lack of data collection around sexual orientation and gender identity. And most research and much of the data have been based on the experiences of white, middle class to affluent individuals living in urban areas. The majority of the reports and papers found through an online search on LGBTQ end-of-life care was from the UK and Australia.

In order to fully assess and address the issues and needs that LGBTQ individuals face at the end of life, further research must be done. And greater focus must be placed on the diverse range of experiences that make up the community.

Best practices:

  • Make an effort to educate yourself on basic LGBTQ health disparities and terminology, and how to recognize and challenge discriminatory beliefs about LGBTQ people.
  • Implement a staff training program and advocate for cultural competency in treating LGBTQ patients.
  • Encourage further research on the needs and experiences of diverse LGBTQ patients at the end-of-life.

Treating everyone the same is not the same as meeting someone’s needs. It is not so much a matter of providing equal care and avoiding discrimination than recognizing that sexuality and gender can be an important part to someone’s identity, and does impact their health needs.

Making a big impact in the end-of-life and healthcare experiences of LGBTQ patients requires both little and large effort. Providers must have an open mind, be respectful and compassionate, and acknowledge an individual’s unique life from beginning to end—the basic tenets of holistic end-of-life and palliative care.

It’s simple—but it makes all the difference.

Further resources:
National LGBT Health Education Center (Fenway Institute)
National Resource Center on LGBT Aging
SAGE (Services and Advocacy for GLBT Elders)
LGBT HealthLink
     best and promising practices for LGBT cancer patients
LGBTQ -Inclusive Hospice and Palliative Care (Book)
Creating a Welcoming Clinical Environment for LGBT Patients – Rainbow Welcome Initiative
Providing Welcoming Services and Care for LGBT People – Fenway Institute
“Hiding who I am”: The reality of end of life care for LGBT people – Marie Curie
American Academy of Hospice and Palliative Medicine’s video on providing palliative care to LGBT patients
Search engine for agencies trained on LGBT cultural competency – National Resource Center on LGBT Aging

Vivian Lam is a clinical research coordinator in thoracic oncology at UCSF, striving to contribute tangibly to the fields of end of life and palliative care, and the medical humanities. She enjoys running long distance and warbling the same songs in the shower all year long.

Monday, November 13, 2017 by Pallimed Editor ·

Saturday, November 4, 2017

Defining Dignity at End of Life: One Question to Ask Hospice Patients

by Lizzy Miles (@lizzymiles_MSW)

I start every new hospice patient interaction with a hello. I introduce myself and then ask for permission to sit and visit. It is not uncommon for the patient to start off on guard, wary. By the time patients meet me, they have been through a lot of medical interactions. They have been asked a lot of questions.

I tell them I have just one question. I sometimes notice an exhale. Whew. She’s not going to grill me.

Dignity In Care, developed from research by Dr. Harvey Max Chochinov, starts with the Patient Dignity Question (PDQ). It is a simple, open-ended question: “What do I need to know about you as a person to give you the best care possible?”

The answer to this question will lead you to have a greater understanding of the needs, desires and identity of the person beyond their being a “patient.” There is no wrong answer to this question, despite what family members might think.

One time a patient responded with, “I am a lifelong Cubs fan.”

The nurse, chaplain and I made small talk with the patient for a few minutes about baseball, The Cubs, and a broken curse.

The patient’s wife scowled and then apologized to us. “I’m sorry, he gets off track.”

“He’s not off track,” I responded. “This is what’s important to him right now.”

What we weren’t doing was talking about his illness. He was sick of talking about his symptoms, his diagnosis, how he was feeling. For once, he wanted to feel normal.

The answers to “the dignity question” as I call it, are varied, but always telling.

The patient who told me, “I love my husband” would eat when she wasn’t hungry just to appease him.

The patient who said, “I’m precise in my care of things” wanted to know the details of every medication that was being administered.

The patient who said, “I am a good person. I try to help people” worried that every request was an imposition.

I have heard more than one patient say, “I am crazy.” It is their way of sharing that they have a certain approach to life, and they want to keep the conversation light.

One patient I met in the inpatient unit had been throwing up for days. We were having trouble getting her nausea under control. In this midst of vomiting she told me, “I’m happy-go-lucky, hopefully.”

Sometimes the patient does not want to answer the question. They will say, “I don’t know.” Depending on their tone, I might ask, “Would it be safe to say you are a private person?” If they acknowledge that they are private, then I tell them it’s good for me to know that. I explain to them that as their social worker, my number one job is to advocate for them. I tell them I will let others know they don’t want a lot of questions. Not surprisingly, when I give them “permission” to be private, they often do open up to me.

If a patient says, “I don’t know” because they are not introspective or don’t like talking about themselves, I’ll ask if they are okay with me asking their family. This opens up an interesting dialogue where the family shares about the patient in front of them. I will usually ask the patient if they agree with what their family member said.

A daughter once said, “She’s cranky” and suddenly the quiet patient retorted, “look who’s talking!” and they got into a friendly banter.

Families don’t always know how the patient would answer. Whenever possible, get the answer directly from the patient. A patient who was described as “family oriented” later woke up to define himself differently. “I am a musician,” he said.

There are times when a patient comes onto hospice minimally responsive and not able to answer for themselves. The family members’ responses to the dignity question can still be helpful.

I had one spouse who told me that her husband was extraordinarily modest. He didn’t even like to change clothes in front of her. That week, I went to the house when he was actively dying and I noted there were at least 15 people wandering in and out of the room. I provided as much support as I could, and once I was certain symptoms were under control and family felt confident in providing care, I started to say goodbye.

I sat down with the wife on the porch.

“Do you remember when you said your husband was modest?” I asked.

She nodded.

“How do you think he would feel about all the people looking at him while he was dying?”

She knew where I was going with my line of questioning. “Oh he would hate it!”

I agreed and suggested that he might be hanging on until he had privacy. I told her I knew it was a delicate situation because other family needed to say goodbye, and I would leave it up to her to figure out the best way to clear the room.

She reported later that she was able to encourage people to give him privacy, and he died that evening with just her by his side.


How do you see yourself?  How would you answer the question? How would your loved ones describe you?

I told my husband about the dignity question one evening after work. I said,” I would like to think I’m happy-go-lucky.” He laughed loudly (perhaps snorted) and told me I was most definitely NOT a carefree person.

I sometimes share this story with families as a way to encourage them to imagine what the patient would want me to know (if the patient can’t speak for themselves). The question itself appears to be therapeutic as loved ones speculate how the patient would describe themselves. If multiple loved ones are in the room together, I give everyone the opportunity to answer the question and you learn about the patient and their relationship.

“He was always generous.”

“She is a gentle spirit.”

“He would give you the shirt off his back.”

“She liked strippers, booze and rock and roll.”

The way that patients define dignity is unique to the individual. If you are not familiar with Dignity In Care research, I would highly recommend the Dignity In Care website which has information on research effectiveness and an additional toolkit of questions to further explore patient needs.

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.

Memes created by author utilizing photos from
sunflowers: Brigitte Tohm
baseball: Joey Kyber
precise:  Andrea Sonda
musician: Junior Pereira

Saturday, November 4, 2017 by Lizzy Miles ·

Monday, October 30, 2017

Conference Review: 2017 Palliative and Supportive Care in Oncology Symposium - Day 1

by Christian Sinclair (@ctsinclair)

It is a testament to the growth and mainstream acceptance of palliative care, that there is a sub-sub-specialty two-day conference like the #PallOnc conference held in San Diego this past weekend. If you have not heard of this meeting yet, and the majority of your work in that intersection between oncology and palliative care, I would highly recommend considering it in the future. This is the 4th consecutive year the meeting has been held, and I applaud the commitment of the four co-sponsoring organizations (AAHPM, ASCO, ASTRO and MASCC). Kristina Newport and Shanthi Sivendran reviewed this conference for Pallimed in 2014 and it was one of our most popular posts. They went on to create the very popular Oncologist in Your Pocket pre-conference at the 2017 Annual Assembly of Hospice and Palliative Care. Clearly there is a hunger for this information!

With two-days of talks and over 150 posters, there is a lot to cover, but let me share some of my key takeaways and highlights of the symposium. For more detailed coverage you can check out the transcript at Symplur or the website (paywall).

The opening session focused on innovative models to integrate palliative care within oncology. Dr. Janet Bull (Four Seasons) made strong points about standardizing care, which starts by developing processes and procedures, collecting data and then using both to cycle through quality improvement. It can be difficult to take the loose, narrative approach commonly seen in palliative care and start to implement structure around the clinical visit. We want it to be patient-centered, and therefore often clinicians will allow the visit to be driven by the patient. Listening to Dr. Bull helped solidify the argument for allowing patient-centered approaches but using design-thinking to make sure that we are truly meeting all the needs of the patient, the system and ultimately ourselves (though efficiency and work-life balance)

The research presented Friday helped define what is involved with early integrated palliative care that makes it successful. Hoerger and colleagues presented analysis of palliative outpatient visits where the clinicians marked what they did immediately after the visit was done. Coping and symptom management were consistent through nearly all visits. Rapport and illness understanding were important early, where as treatment decisions and advance care planning were more important in later visits after trust had been established. While this may seem intuitive it is helpful to have more solid research behind what exactly palliative care that makes it effective.
Dr. Haider and his peers presented a detailed examination of how computers impact patient perceptions of empathy, communication and compassion. If you can take a wild guess, patients preferred the doctor in the vignette where they didn't use the computer. This seems intuitive, but again the research helps set the foundation for how we integrate point of care documentation (efficient, now bedtime charting), immediate access to scans and labs (to facilitate discussions with patients), while still being focused on the patient. Some people use scribes, other people do joint documentation with team members.
And it brought up a very palliative moment in the Q and A!
In the afternoon Sandra Mitchell (NCI) had a great session on fatigue during and following cancer treatment. While it is difficult to read some of the headers, I htink this is a smart approach to presenting data on symptom management, with green = good data, and red = less data. As you might see low-dose dexamethasone is on the red side. So maybe those of us seeing some good results from that, need to publish better data (or readdress on own biases).
One consistent theme was the importance of non-phamacologic management. What unfortunately was not routinely addressed was how to access CBT, acupuncture/acupressure, massage, psychology and others. I feel relatively lucky but occasionally frustrated at how to get my patients access to these services on a consistent basis to meet their needs. It is one thing to hear about how great they are at a conference, but another thing to get them implemented in your practice. If anyone has stories of success please share them with us!

More coverage on day 2 tomorrow!

Christian Sinclair, MD, FAAHPM is editor of Pallimed, and a palliative care doctor at the University of Kansas. He loves that next year's #pallonc conference will be in San Diego again, since that is his hometown!

Monday, October 30, 2017 by Christian Sinclair ·

Monday, October 23, 2017

Quality Improvement – The Science of Making Care Better for All

by Arif Kamal (@arifkamalmd)

It seems everywhere a person turns, there’s nonstop discourse regarding healthcare quality, particularly the relationship of meeting quality metrics to demonstrating lower costs and higher value. As palliative care further immerses itself into usual healthcare delivery, it behooves our workforce to adeptly apply quality improvement skills to translate our sense of “what is right” into the usual practice of “what is done.” Meeting these demands takes skills and practice, rooted in an evolving evidence base around quality improvement science.

It may confuse some to hear that quality improvement is derived from science. For some, quality improvement is what you call things when there’s not grant money, not a protocol or consent, the project is not publishable or meaty enough to face the feedback or scrutiny of your peers, or when there’s a high likelihood of failure. Quality improvement and “pilot” study can sometimes seem synonymous, and it’s certainly the former and not the latter when results are negative or there’s “more to learn.”

In fact, quality improvement is just as time and resource intensive as pure research, a reflection of rigor that started from the very beginning. The formative years of quality improvement science originated from the factory setting, where observers painstakingly monitored outcomes at the individual and systems level, quantified opportunities for improvement at the outcome (number of widgets) side, and changed how products are made through incentives and modifications to the environment. The origin of the term the “Hawthorne Effect” comes from just such study.

In the 1920’s, the Hawthorne Works, a telephone products manufacturing plant just outside of Chicago, commissioned investigators to experiment how to increase productivity among assembly line workers. The studies continued on for almost a decade, with small changes in lighting (brighter lighting led to more productivity), changes in cleanliness of facilities, and moving work stations around, all leading to small, time-limited upticks in production. In the end, the investigators concluded that the changes in production were ultimately more a result of the workers knowing their production numbers were being observed, than the actual interventions themselves. Though different than what the investigators had originally thought, the Effect is a powerful tool used today to motivate change. The Hawthorne Effect is why highway signs that announce the monitoring of speed by an increased police presence and overhead aircraft reflectively lead to drivers slowing down. Knowing you’re being watched changes your behavior.

From the early part of the 20th century moving forward, a robust science regarding process control, change management, and behavior change built upon the early lessons from the Hawthorne factory. We now have approaches like Failure Mode and Effects Analysis (FMEA) that try to anticipate errors or understand when future breakdowns of the system will occur. Much of this is built upon knowledge that comes from the fields of human factors engineering and industrial engineering, far away from the settings where healthcare is delivered. We also discuss the concept of “high reliability organizations” that anticipate and address opportunities for improvement within increasingly complex environments. It’s the idea that healthcare could become like nuclear power plants and the airline industry; extraordinarily rare errors, that when they occur, are industry-wide learning events. Getting there involves a focus on quality improvement science that is no less robust or meticulous than generating our evidence through clinical trials and the like. And importantly, palliative care through its entrenched ethos and culture around shaping the system to maximize patient-derived wishes, can lead the way in getting there.

To get a taste of quality improvement and its implementation in palliative care, my colleagues and I recently published an article “Quality Improvement Pearls for the Palliative Care and Hospice Professional” which the publisher of the Journal of Pain and Symptom Management has made available for complimentary download for the next few weeks.

Also, there are webinar-based opportunities to learn more about the quickly-evolving environment in palliative care quality. For example, the community-based palliative care quality improvement collaborative I co-chair with AAHPM President Janet Bull, the Global Palliative Care Quality Alliance, is hosting its Third Annual Quality Matters in Palliative Care Conference.

This free, virtual, webinar-based, half-day conference will offer complimentary CME/CNE and feature speakers covering topics related to principles of quality measurement, population health and palliative care, and what CAPC, AAHPM, and HPNA are doing to further the quality agenda in our field. The conference is this Thursday, October 26th in the afternoon. Please register at Even if you can’t attend live, please register to receive a copy of the slides and a recording of the presentations.

Arif Kamal MD, MBA, MHS is an Associate Professor of Medicine and Business Administration at Duke University and Physician Quality and Outcomes Officer of the Duke Cancer Institute. He is the father of two beautiful children and has learned (as the younger one is 6 months old) that sleep is a precious, precious thing and should be appreciated whenever (if ever) it occurs.

Monday, October 23, 2017 by Christian Sinclair ·

Monday, October 2, 2017

Building Certification for Hospice and Palliative Care Social Workers - Take the Survey!

by Megan Mooney

(Take the Hospice and Palliative SW Job Analysis survey before October 5th if you are a social worker. If you are not a social worker, encourage social workers in hospice and palliative care that you know to take it!)

What is Evidence Based Practice?
The Institute of Medicine (2001) defines evidence-based medicine as “the integration of best researched evidence and clinical expertise with patient values” (p. 147). According to Social Work Policy Institute (2010) evidence-based practice (EBP) is defined as the combination of research interventions, clinical experience, values, and client preference that aids practitioners in treating individuals. In social work, the consensus is that EBP is a way of practicing, assessing, intervening, and evaluating based on empirical support, which helps practitioners become more effective (Mullen et al., 2008). This approach assures that the treatments and services offered to clients will have the most effective and beneficial results mirroring what the research shows.

Why is it Important for Social Workers to Participate in Research?
To ensure the effectiveness of the social work profession, standards of social work education have been applied and implemented into accredited programs. The Council on Social Work Education (CSWE), states “Social workers use practice to inform research, employ evidence-based interventions, evaluate their own practice and use research findings to improve practice, policy, and social service delivery” (CSWE, 2008, p. 5).

Additionally, the National Association of Social Workers (NASW) Code of Ethics 4.01 Competence, states “social workers should base practice on recognized knowledge, including empirically based knowledge, relevant to social work and social work ethics” (NASW 2013, para. 39). As you can see, the Social Work field has started to increase its emphasis on EBP, by putting these standards of education and practice into place.

Has someone ever asked you how do you know that intervention that you’re doing is effective and the best one available? As competent Social Workers, we must be able to provide that answer and the answer is always “through evidence based research or practice”. As Social Workers, we make a commitment to better ourselves, the communities we serve, and to help improve the knowledge base of our field. We need to help contribute to the developing of evidence based practice. Research is vital to social work because it helps us to be effective and to provide the best services possible to our communities!

How Do We Participate in Research?
Social Workers have many opportunities to be involved in research. The NASW outlines this in their Evaluation and Research section. If you’re near an institution (University or Hospital), see if they need any help with the research they’re conducting. We can participate in online surveys (quantitative data) that helps contribute to the knowledge base of our field. We can also agree to be interviewed for qualitative data that will help researchers identify the needs of our work. This all helps to provide the best interventions needed in our areas of expertise!

We Have a Great Opportunity for Hospice and Palliative Care Social Workers to Help Right Now!
A great opportunity that social workers in the hospice and palliative care field have right now is to participate in the Hospice and Palliative Social Worker Job Analysis Survey! We do hope that you will help with this and invite your other HPM friends too. This is a wonderful opportunity to help improve our field! We only have until October 5th to complete this survey! It only takes about 30 minutes and you get entered into a drawing to win a chance to go to one of the SWHPM conferences. Here is the link:

If you are a practicing hospice and/or palliative social worker, you are invited to complete the Hospice and Palliative Social Worker Job Analysis Survey, the first step in creating the certification program. Please invite other social workers you know to do so too!The survey will be open September 5 - October 5.

Megan Mooney, MSW is a researcher with the University of Missouri and leads the Pallimed Facebook efforts. She also started Death Cafe in St. Joseph, MO.

Monday, October 2, 2017 by Pallimed Editor ·

Wednesday, September 27, 2017

Palliative Care in the Time of Hurricane Harvey

by Ishwaria Subbiah (@IshwariaMD)

Trouble Brewing
Between the network news and many institutional emails on hurricane preparations, we at MD Anderson knew were in for something ‘big.’ Harvey made landfall on August 25th as a Category 4 hurricane about 190 miles southwest of Houston. The outer bands brought rain without any major disruptions to our practice. As expected, upon landfall, Harvey rapidly weakened but stalled over Texas. The subsequent two days brought a level of rainfall best described as apocalyptic. The institution’s leaders activated the ‘ride-out’ team where the core essential physicians and staff remained in-house for the duration of the disaster.

Bare Bones Palliative Care? Interdisciplinary Team of One
‘Skeleton’ staffing seemed inherently counterintuitive to the model of Palliative Care through the interdisciplinary team (IDT) of physicians, Integrative Medicine team, psychologist/counselors, social workers, case managers, and chaplains. Of course, all the bayous and retention ponds were no match for 50 inches of rain that fell in a matter of a few days. So the roles of the IDT were condensed to the Palliative Care staff who were riding out in the hospital. Our in-house Palliative Care ride-out physician, Dr. Marvin Delgado, embraced his several roles and adds how he was open with his time, and ensured that he and the patient had “the opportunity to cover aspects of symptom management, the physical, emotional, and spiritual, as well as time to discuss and counsel about what’s been happening.” Dr. Delgado adds, “As I realize that I cannot do much about what’s happening outside, but the simple fact of sitting down and listening to [the patient] helped them a lot.” Dr. Delgado goes on to reflect how striking it was that despite their own struggles and suffering, the patients were still worried about others around them; they were very open to sharing their thoughts and sentiments about the situation with him.

Multimodal Care!
Harvey became a test of a multimodal care model during any disaster (natural or otherwise). Overall the Palliative Care team cares for about 155 people (and their families) on a daily basis between the Supportive Care clinics, inpatient consult team, and inpatient Acute Palliative Care Unit (APCU). It was amply clear that access to the Texas Medical Center was neither safe nor feasible. Within our faculty and staff, several were experiencing active water damage to their homes, and many more were under mandatory evacuation orders. The remainder of us were ‘hunkering’ down at home. So how do you provide care when your traditions of practice (i.e. face-to-face encounter, etc) are simply not possible?
Soon, emails started floating around to our department mailing list – ‘my streets are flooded but I have power and internet access and can help from home.’ Faculty, fellows, nurse practitioners, and physician assistants announced their availability to help via phone. As a priority, the in-house physician for our service first rounded on the APCU patients, for whom we were the primary inpatient physicians. From their home, our medical assistant and Palliative Care fellows took charge of the department pager. They answered the calls from two sources – the inpatient consulting teams and our outpatients.

Telephone Care
As is standard practice, when the inpatient primary teams paged to report sub-optimally controlled symptoms, our responding Palliative fellows (with the assistance of faculty available via telephone) provided recommendations and, for those consult patients with the highest level of distress or a suspected toxicity, the in-house PC physicians evaluated them in person. The underlying sentiment among all in-house at MD Anderson during the ride-out was clear – this is an exceptional time and we will all deliver as effective a care as possible under the circumstances.

For Palliative Care, this translated to a level of understanding from the primary consulting teams that whereas at any other time, we as PC team would be there to evaluate most patients in person, during these times, we will get as much relevant info over the phone prior to giving recommendations to them to order and execute if they feel it is appropriate.

Outpatient Calls – more than pain!
Our Outpatients paged us, mostly concerned about the institution’s closure and their cancelled Oncology and Supportive Care clinic appointments particularly because they were due for a refill of their opioids for cancer pain. With a telephone assessment for opioid-associated toxicities and efficacy and based on their electronic medical history (in particular any prior concerns for aberrant opioid use), as a departmental decision, we transmitted an e-script for a 2-4-week supply of their controlled substances until their next visit. By the 3rd day, a Palliative Care clinic crew of 4 physicians and 2 nurses assembled in the clinic to individually call each patient who had contacted us as well as those with missed appointments. Patients shared the overwhelmingly positive, qualitative response to have a clinician directly speak to them during this time of distress.

Uncertainty ruled in every aspect of life
Beyond pain or whichever symptom prompted the patient to call us, the universal sentiment we observed was distress of varying degrees as a direct consequence of uncertainty – an uncertainty extending through nearly every aspect of their life from disease management to their own homes/lives to the state of their medical care providers’ facilities. Regarding their cancer treatment, questions ranged from the cancellation of a scheduled infusion, the consequences this delay and interruption to this treatment and disease outcome, and the limited communication (since the clinics were closed) during the early period of the worst rains when it was not clear when the clinics and infusion centers will be back up and running. Patients were also concerned about their home (flooding, electricity, flooded cars, access to food and water) as well as access to care (flooded roads at home or near the hospital, most pharmacies being closed, major hospitals being inaccessible even through 911). Ultimately, the amalgam of all these elements of distress presented with a greater need for Supportive Care.

“An Army of People”
On Monday August 28 and Tues August 29, when the medical center was inaccessible, we had an in-house ride out team led by Dr. Marvin Delgado and our Chair Dr. Eduardo Bruera as well as 6 faculty, 4 NPs/PAs, and 4 fellows (many of whom had sustained damage to their own home) provided telephone care for all new inpatient consults, our current inpatients, as well as clinic patients.

The Supportive Care “Army of People” (as our Chief Medical Officer Dr. Karen Lu phrased to NPR) was out in full force in support of our patients, families, and consulting teams during these trying times! By August 30, when the rains slowed, water in the Texas Medical Center receded, and a handful of roads became accessible, the larger IDT recognized the distress that disruption of a person’s scheduled care can cause. The Supportive Care team mobilized 12 Palliative Care physicians along with our department administrator, 2 Integrative Medicine physicians, 2 Rehabilitation physicians, 8 nurse practitioners/physician assistant, 4 Palliative Care fellows, and 2 psychologists/counselors – all of whom came into the hospital during the ride-out phase voluntarily to take care of the comprehensive needs (both physical symptoms including management of pain, nausea, vomiting, shortness of breath and psychosocial symptoms including high level of distress, anxiety, depression) of over 100 inpatients and their families, in addition to calling many more clinic patients with a management plan during the outpatient closures.

“It was a call, a necessity to help!”
Ultimately, we as Palliative Care practitioners observed that the uncertainty and associated distress of a large scale disaster can be mitigated to an appreciable extent by the presence of the medical team and sense of ‘normalcy’ brought on by the care of the palliative care provider, and, knowing that in due time, the logistics of missed appointments, infusions, etc. will be sorted out. (Indeed, in the subsequent two days, the hospital leadership and clinic teams effectively rescheduled a majority of missed visits and infusions including the medical teams opening full clinics on Saturdays and Sundays.)

As the rains began while he was home, Dr. Delgado reflects on the compelling overwhelming sentiment to come to see patients. He notes, “I believe that people with advanced illness are people who are having their own Harvey in their lives and on top of that they are experiencing something else that is happening outside that they cannot really control. It was a call, a necessity to help!”

Ishwaria Subbiah, MD, MS, is a medical oncologist and Palliative Care physician at the University of Texas MD Anderson Cancer Center. When she's not chasing after her 3 young kids, she and her husband can be found at the opera (sans children, of course).

Wednesday, September 27, 2017 by Pallimed Editor ·

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