Monday, February 27, 2017

Extremis Documentary Falls Short at Oscars, Wins Over Palliative Care

by Christian Sinclair

Last night at the Oscars, there sure was a lot of excitement for many of my friends and colleagues, and I'm not just talking about the surprise ending with La La Land winning Best Picture, then losing it in a tragic mistake of envelopes, to another well-deserving film Moonlight. That is because many of my friends and colleagues are strong advocates and wonderful clinicians who are vocal about excellent care at the end of life.

The film Extremis, which was released in April 2016 at the Tribeca Film Festival, was nominated for An Academy Award for Best Documentary Short Subject, but up against top competition did not end up taking home the Oscar. The winner last night was a film about the Syrian Civil Defense volunteer rescue workers called The White Helmets. The nomination for Extremis should really be considered a win, because now many more people are aware of it, and palliative care providers can use it as a discussion tool.

Extremis offers a glimpse into the hectic and fragmented world of the Intensive Care Unit and the decisions doctors, patients and families make when the chances of survival reach the limits. The clinician who we follow is Dr. Jessica Zitter, a Critical Care Specialist and board-certified palliative care physician.

We see glimpses of her conversations with a diverse group of patients and families, never lingering on one discussion too long. Many phrases will feel familiar to palliative care and ICU staff as hope, miracles, uncertainty, and staying positive all struggle to push back against the overwhelming weight of illness. Initially, I found myself being a little too critical of some conversations. "I would never say that," I would think to myself, until I recognized that I have said those things, but they were in the a certain context. Director Dan Krauss, doesn't always give you the context of the conversation that we often get when we work at the bedside each day. When trust is built you can broach the most difficult topics.
I found it interesting the filmmaking team decided not to highlight the buildup of trust and relationships, yet there is a reason for that. The real focus of this film is not Dr. Zitter, it is the people experiencing the illness, the patient and their family. It takes a while, maybe even after you are done watching it, to recognize that the small windows into how people think and fell their way through a critical illness and possibly dying, is the important take away here.

I'll be very interested to see how palliative care and hospice teams use this film to spur discussions within their own team or organization, or to engage the community to think about these issues before they find themselves in Extremis.

You can catch Extremis now on Netflix.

Christian Sinclair, MD, FAAHPM, is the Editor of Pallimed, and amateur film buff who once got to meet Dr. Zitter and the producer Dr. Shoshana Ungerleider at a conference and forgot to ask to take a selfie with both of them.

Monday, February 27, 2017 by Christian Sinclair ·

Sunday, February 26, 2017

SWHPN 2017 Conference Reflection

By Abigail Latimer

Although I have three years of hospice clinical social work, I am only six months into my career with inpatient palliative care. I learned about SWHPN (Social Work Hospice & Palliative Care Network) and quickly applied and received the scholarship to attend the conference. It was beyond any previously held expectation and I left in awe of the work that is being done from around the country and world. As I sat next to great leaders like Dr. Grace Christ, Terri Altilio, LCSW and  Shirley Otis-Green, LCSW, OSW-C (to name a few) I felt humble and as Susan Blacker, MSW, RSW and Susan Hedlund, LCSW, OSW-C described during their accidental leadership presentation, I thought to myself “oops, maybe I am not supposed to be here!”

The week was full of encouragement to pursue research and take advantage of leadership opportunities with strategies and words of advice to guide you. We heard from Andrew MacPherson who reminded us to stay calm, there are positive conversations in Washington and time is on our side regarding changes with the ACA. We were reassured the calls to legislators and other political leaders helps and to keep “demonstrating the hell out of it” to see change.
 
Myra Christopher and Susan Hedlund approached the all too familiar topic of PAD, reminding us to support our patients first and remember there are “good people on both sides of the debate.” Agreeing we all want to see changes in the way we provide care to those at end of life.

The Consensus Project and efforts to establish Hospice and Palliative Care credentialing are well under way and we were asked to send our job descriptions to Dr. Barbara Head. The theme “there’s not enough of us” kept resonating throughout the sessions, leaving an open invite for advancement in our field, but also the overwhelming feeling of responsibility.

Emerging leader Anne Kelemen, LICSW joined her colleagues Vickie Leff, LCSW, BCD and Terri Altilio, LCSW to end the conference reminding us our language has power. I desperately wished for my pen to magically absorb their knowledge as I frantically scribbled down their words. As social workers we are given the honor to hold our team members and other professionals accountable to recognize distortions, make the implicit explicit and remove the burden of blame from our patients and families. Also, don’t forget to look for the humor as the situations we deal with are absurdly difficult.
 
I, like many others, came to this conference wanting information, a new skill or technique to help my patients or ways to connect intra-professionally. However, I left- we all left- with so much more. I will move forward with the confidence to invite myself to the table to not only provide a knowledge and skill set but also to learn and respect other perspectives. Of course this is easy when I know the supportive community of SWHPN is all in.

My notes from the week reflect numerous ideas with strategies and potential supportive contacts.  Generated ideas include hospital wide bereavement protocol, social work journal club, caregiver support group, methods of teaching my student and development of a social work student handbook.  Ambitious? Yes. Possible? Absolutely. Not before mentioned, however, is the unquantifiable takeaways; the things you cannot quite put into words. The way I look at patients and families on day one post-conference has changed. The way I carry myself, the language I choose, the attitude and approach to each situation has evolved in such a way that my work will never be the same. I am happy about this, but mostly because the people I serve, will benefit the most.

Abigail Latimer, LCSW is a Clinical Social Worker for Palliative Care at the University of Kentucky Hospital in Lexington, KY.  She is currently researching the ability of case managers in a hospital setting to identify and respond to bereavement needs in a hospital setting and seeking her doctoral degree at the University of Kentucky College of Social Work. She is an avid health and fitness enthusiast and most recently had surgery to repair her shoulder following a wrestling injury. And yes, she was the wrestler. You can contact her at abbie.latimer@uky.edu.

Sunday, February 26, 2017 by Pallimed Editor ·

Monday, February 20, 2017

Social Media to Enhance the 2017 Annual Assembly

by Christian Sinclair

The Annual Assembly of AAHPM and HPNA is right around the corner and if you are going to Phoenix, or staying home to keep things running smoothly, social media can help make your conference experience be transformative.  Since 2009, the Assembly has been making use of Twitter to provide additional insight, commentary and sources for the multiple sessions each day. Now things are expanding to dedicated conference apps, Facebook and Instagram. And for the first year ever we have Twitter contests.

The official hashtag of the conference: #hpm17 (works on Twitter, Facebook, Instagram), use it in every tweet this week! To make it easy to include the hashtag in every Tweet, you can sign in to Tweetchat.com or tchat.io on your tablet or desktop. (Are you wondering why the hashtag for our interprofessional field/assembly is #hpm and not #hpc? Read more here.)


The Pallimed Network will feature content across multiple platforms and will include the HPM chat account from Twitter.

Pallimed Network Accounts
Official Annual Assembly Social Media Links
American Academy of Hospice and Palliative Medicine: 

Hospice and Palliative Nurses Association:
Social Work Hospice and Palliative Care Network (Not part of the Assembly, but having a conference right before)

Monday, February 20, 2017 by Christian Sinclair ·

Wednesday, February 15, 2017

Warming Hearts, Cloaking Grief


By Lori Ruder

He moves over and she snuggles in close to her fiancé. She pulls their blanket over them. A special blanket made just for this moment. “I love you” she murmurs, soaking in his face and his warmth. “Goodnight lovebirds,” his mother teases as she turns out the lights.

This moment is both tender and tragic: tender because they are demonstrating their love for each other, tragic because this is happening in the ICU.  Her fiancé is on life support and he is dying. He moved over because I moved him over to make room for her in his narrow hospital bed. I repositioned his ventilator tubing and central lines out of her way, closed the side rail behind her for support, and helped her pull their blanket over them. This blanket was made by ICU nurses for moments like this: to have something to offer when medicine doesn’t.

Using our own time and money, we gather together to make blankets. We make them in many colors and patterns, to match the many styles that come from all walks of life. They are simple fleece tie blankets, the kind a Girl Scout might make, but they are soft and warm. They are something soft amidst the harsh reality of critical illness and death, and something to provide warmth and comfort--to touch a loved one during last moments as if to capture their essence before they are gone. The blankets are a memento of touch to take with them when they leave this place and their loved one behind.

We give our blankets when we know the end is coming, after

the “I wish we had better news” has been said. And sometimes we give our blankets when it hasn’t been said yet. We know when it’s time usually before anyone else, before the family realizes or the physicians are ready to admit. We give them at our discretion; we do not need an order.

We have blanketed older patients so that husbands or wives of many years will have something that remains. We have covered a young mother dying from cancer with two, one for each of her preschool-aged children, so when they don’t have memories of their mother’s arms around them they will have her blanket and know it came from her. We provide markers so that those coming to say goodbye can write a message of love. When the patient dies we leave it to the family to decide where it goes. Some choose to leave it behind. Some choose to keep it with the patient after death. Many take it home with them. It is our gift of love in a time of sorrow, and how they choose to accept it is honored. Our hope is that these blankets will warm their hearts and cloak their grief.

“Blanket” defined as a verb means “to cover completely with a thick layer of something.”  Synonyms include “cover,” “shroud,” “swathe,” “envelop,” and “cloak.” By using the term “cloak” my intention is not to cover or obscure grief, to pretend it isn’t there. By using the term “cloak,” I am referring to the Latin origins of the word, “pallium,” now in its current English form as “palliate.”  To palliate means to make something less severe, to ease and soothe, without removing the cause. Our intention is to hopefully make grief less severe, to ease it in some small way through a simple gesture of cloaking the dying with a blanket created from caring.

On this particular night my patient already had a blanket, one that had been autographed with messages of love, one that had covered him and his mother earlier when she moved in close to say tender goodbyes. But I realized he had two important women in his life who needed comfort. His mother, who loved him before his birth and never left his side, and his devoted fiancée who dreamed of a future with his own children that would never come to be.


I took her out to our supply of blankets to choose the one just right for them. She instantly liked a light green one with polka dots.  Although she was hoping for purple, his favorite color,our selection didn’t offer a purple one that was masculine enough for the strong man she knew. I told her, “He loves you. He’d be happy if you chose the one you really like.” And so it was the light green one that she snuggled under close to him, sleeping peacefully while his heart took its last beat. It was the green one that she clutched to her chest after he died, her face a blank slate of shock and disbelief. It is the green one that I pray she still holds tight in her time of grief, feeling the same sense of closeness and tenderness she felt on their last night together.

It was a simple fleece blanket, tied together by ICU nurses who bear witness to much suffering, sadness, and loss. It was something to offer that didn’t cause pain and only provided warmth and comfort. These blankets are tied together by our sincere desire to palliate the heartbreak of our patients’ families and, selfishly, our own.

Lori Ruder MSN RN is a Certified Hospice and Palliative ICU nurse in the Medical Intensive Care Unit at University Hospitals Cleveland Medical Center.  Many times spoken words can’t give her heartfelt and heartbreaking experiences justice, so she writes them to remain resilient.  If you’d like to summon your inner Girl Scout and help the cause you can find her on Twitter @LoriRuder.


Wednesday, February 15, 2017 by Pallimed Editor ·

11th Annual Pallimed and GeriPal #hpmParty at #hpm17


Come one, come all to the 11th annual Pallimed / GeriPal party during the Annual Assembly of AAHPM and HPNA! And right after SWHPN's conference too!

In keeping with tradition, we will host it on the Thursday of the Assembly (Feb 23rd).  We will start at Lustre at around 8 PM and move on from there to Hanny's at 10pm (and then who knows what).  Like always though, these are rough estimates of time, so if you want to know the details, follow the hashtag #HPMparty on Twitter.

Also, feel free to invite and bring anyone, as this is no exclusive crowd.

Ways to follow: 




by Christian Sinclair ·

Monday, February 13, 2017

Is it Death Denial or Death Defiance?

by PJ Moon

A phrase in Dr. Dieter’s recent Pallimed piece, "Facing the Abyss: Planning for Death," usefully resurfaced a notion I’ve had for 12 years now. It started when a professor I was working under remarked how the "death denial thesis" may not really be valid anymore in geriatric/end of life publications and discourse.

Combing through the literature, my professor’s hunch rang true, but only faintly so. To be clear, it wasn’t that issues of human mortality were given special spotlight by journal editors and varying authors, but rather the matter was generally portrayed in ways that did not neatly fit the category of denial, cloaking, or marginalization. Instead of the so-called death denial thesis being eliminated, I perceived another thematic rhetoric rising. 

Given the commerce of innovation in medicine and cognate arenas, emerging tools have enabled us to ‘manage’ death, hence rendering death-denial less marketable. I call this the death-management thesis. 

Let me clarify the usage of the term ‘management’ in this context. Here, it does not mean an approach to our inevitable end where it is bravely confronted with solemn sincerity, strategy and resolve. No. Rather, death-management denotes a semi-deceptive scheme of managing-from-the-top what it sees as a nagging, irritating and pesky problem of existential impermanence, namely death. Colloquially, I’m using death-management as a reference to how we clamor to gain control over our end so we can manage it by manipulating related dynamics (e.g., pace of decline, labeling processes and conditions (as giving things a name can make us feel as having ‘mastery’ over it, etc.) and, basically, calling the shots so it is not as wild and scary anymore. And so, it is a management project of taming death. It is a management mission to make death submit to us via our innovative tools and techno-rational prowess. Death-management so declares: “Death, we own you and you are under our management!”



But wait, there is more. This line of thinking (manipulatively managing death) conjures a subsequent idea. Once you and I buy this death-management thesis, then it is no huge leap to land on the square of a "death-defiance" thesis. Ok, here’s the sequence: After we can manipulate death so to manage it any way we like, then we are liable to think we can defy it altogether. Shout it with me now, “We not only manage you, death, but we defy you too!”

What a claim.

Before we get carried away, a distinction is made between Hippocratic and Baconian paradigms.1The former is a view that human nature is to be "worked with" out of inherent respect. The latter is a view that human nature is a thing to be figured out towards overcoming and controlling it, to have victory over it, according to our will and whim. So, which appeals to you, dear reader: the Hippocratic or Baconian enterprise?


Whether death-denial, -management or –defiance, mortality rate for the human race is still running on full steam at 100%. Given this persisting fact, it is to our loss when death is denied. You see, when you and I deny death, we lose track of our constituent nature, or our inherent mortal state. When death is denied then we actually give death the upper hand. It just may be that death wants mortals to vigorously exercise the skill of denying its reality so it can eventually strike with greater insult and offense. 


My humble encouragement to us all is threefold: 
(a) please deny the denial of death, lest the impact of its promised arrival be felt much more pungently than necessary 
(b) please rethink if it’s death that’s being managed or merely its common forerunners of certain kinds of pain, angst, slumber, etc. 
(c) please take caution in defying death because wisdom tends to be about facing reality (including seeing through illusions)2 and not turning away from it. 

In sum, I find it more worthwhile to live in light of intractable death by actively preparing for it in various ways today, tomorrow, and the next day, and thereafter until it comes.

1. Jecker, N. S. (1991). Knowing when to stop: The limits of medicine. Hastings Center Report 21,(3), 5-8.

2. McKee, P., & Barber, C. (1999). On defining wisdom. The International Journal of Aging and Human Development, 49(2), 149-164.

Paul J. Moon, PhD, is Bereavement Coordinator at Alacare Home Health & Hospice in Birmingham, Alabama, USA. Even apart from his professional role, he ponders much on his mortality, the afterlife, and how best to get ready. He cares to plead for you to consider doing likewise.

Monday, February 13, 2017 by Pallimed Editor ·

Saturday, February 11, 2017

Show us your #PallimedValentines

Last year the NorthEast Palliatiors from Carolinas Healthcare shared part of their team wellness activity with a Valentine's day theme. This year they shared more Valentine's cards they made and even a team-built poem: An Ode to Palliative Care.

Since February is National Heart Month, and Valentine's is next week, we would love to see the creativity of your hospice and palliative care teams! I'm sure you have at least one Interdisciplinary Team meeting next week, and you probably have some time allotted for education or self-care/team wellness, so let's see what you can do!

Check out our slideshow below or our album on Facebook for some great examples!

Your Valentine's Day creations should integrate a hospice or palliative care theme. We encourage you to keep it positive and affirming, because this may reach a very wide audience and we want to put our best foot forward.

To share your #PallimedValentines with us:
1. Post it to Facebook, Twitter or Instagram
2. Add the hashtag #PallimedValentines
3. Tag us! @Pallimed on Facebook/Twitter, and @pallimedblog on Instagram (Optional, but it helps us find them and might get your post shared more quickly!)
4. Also follow and like us if you are not doing that already.

We'll feature some of the best ones here and across our social media platforms.



Saturday, February 11, 2017 by Christian Sinclair ·

An Ode to Palliative Care

Ode to Palliative Care

Roses are red
Violets are blue
Palliative care, we dedicate these love words,
Solely to you.

You met us where we were at yesterday,
Even met with the patient and family again today,
Tomorrow you will meet as a given,
Forever and always.

Palliative care you came along,
Asked the tough questions like no one before,
Palliative care you spoke to my soul and captured me fully,
And forever more.

Palliative care I give you my heart,
To take care of my family and all that is me,
You lit a fire and spark,
Can you see?

Palliative care you ask me about QOL and make me happy,
As only the team approach can,
Having you in my corner and being with you,
My life is grand.

Palliative care, thank you
With all that is me.
Thank you my boo and my blessing,
for preserving my dignity, for all of eternity.

This team wellness activity is brought to you by The NorthEast Palliative Care Team (aka NorthEast Palliators), who are part of Carolinas Palliative Care and Hospice Group and Carolinas HealthCare System NorthEast in Concord, NC. Fun, creativity, and laughter are high priorities to their Team Wellness Plan.


by Pallimed Editor ·

Friday, February 10, 2017

The Clinical Social Work Role in Interprofessional Practice with Nurses in Palliative Care and Hospice

By Vickie Leff

Susan Blacker, et.al provided an excellent article “Advancing Hospice and Palliative Care Social Work Leadership in Interprofessional Education and Practice.” 1 The authors describe the importance of interprofessional collaboration in palliative care, and strategies to address barriers. Increasing curriculum and practice presence are essential to improving this effort.

I would like to add and highlight a practical example of interprofessional practice that can:

1. help build resilience for nurses
2. serve as a model for clinical social work perspective and problem solving
3. increase the understanding of roles between CSW and nursing.

Implementing this suggested strategy can have an immediate, long-lasting impact.

As a palliative care clinician, I work with providers across the acute care system. I’m happy to see that there are more and more programs and efforts being made to help house staff and other physicians manage the emotional impact of our work 2.

I spend a good portion of my day talking with nurses about our patients, teams, impact of care, ethical decisions, and more. Nurses at the bedside spend many hours with patients and families.They often become the most trusted partner in care, witnessing a variety of difficulties both physical and emotional 3. There is, however, surprisingly little emotional or educational support for processing this emotional impact of this charged work – aside from brief lunchtime banter.

We know from research done with physicians that having structured, institutionally supported programs that addresses  the potential burnout and compassion fatigue felt in medical practice are effective 2. How can we extend these programs n to nurses? There is no break in the day, no protected time: time set aside for a specific reason away from patient care. We must, therefore, follow one of the most basic foundations of CSW strategies--meet them where they are. CSW facilitated debriefings for bedside nurses in acute care hospitals can be challenging in design primarily due to the protected time limitations; however, they can be immediately impactful on several levels.

Suggested Program: Monthly Debriefings for Nurses


Providing monthly debriefings for nursing staff is one such strategy. A 30-45 minute facilitated opportunity  allowing nurses to give voice to the difficult nature of the work they do and how it impacts them can be immediately impactful.

Some of the things I hear at meetings are:
“I was so upset when the transplant team dangled the carrot of transplant for this woman who is clearly dying."
“I just have to compartmentalize this stuff and try and leave it here”
“I can’t talk to my husband about my day, it’s too complicated to explain. Thank goodness I can talk to my colleagues!”

Led by a CSW familiar with the culture and the staff, these meetings are supported by the unit nurse manager. Meetings are open to all nurses on the unit, voluntary and confidential. Though this is not a support group, meeting are led consistently by a facilitator who is familiar with the unit culture. We schedule the debriefings for several months in advance, letting the staff know we are committed to the process, not waiting for an incident to happen.


There are many potential outcomes these debriefings:
  1. CSW and RN management work together to design the program
  2. Increases understanding of the RN and CSW role
  3. Provides resilience-building strategies for staff including self-awareness, availability of resources, normalization,education on burnout, compassion fatigue, and secondary trauma
  4. Learning from each other, breaking down stereotypes and communication barriers
I would encourage clinical social workers in health care to take the initiative and offer the program– other providers don’t know we can do this. This is our expertise; it is what we do very well and it’s a wonderful opportunity for interprofessional development. We have been doing these at Duke Hospital for 3 years in a variety of settings: in-patient oncology, pulmonary step down unit, cardiac intensive care, medical intensive care, general surgery, pediatric ICU and more. Each has its own cultural barriers and openings. Use your clinical skills to tailor your approach for success. We can learn so much from each other.

1. Blacker SH, Barbara. Advancing Hospice and Palliative Care Social Work Leadership in Interprofessional Education and Practice. Journal of Social Work in End of Life & Palliative Care. 2016;12(4):316-330.
2. Back AL, Steinhauser KE, Kamal AH, Jackson VA. Building Resilience for Palliative Care Clinicians: An Approach to Burnout Prevention Based on Individual Skills and Workplace Factors. J Pain Symptom Manage. 2016.
3. Boyle D. Countering Compassion Fatigue: A Requisite Nursing Agenda. Online J Issues Nurs. 2011;16(1).

Vickie Leff, LCSW, ACHP-SW, BCD is the clinical social worker for Palliative Care at Duke University Hospital. She uses running and humor (not at the same time!) as her primary coping mechanisms. You can find her on Twitter at @VickieLeff.

Friday, February 10, 2017 by Pallimed Editor ·

Wednesday, February 8, 2017

14 Ways Hospice Patients Have Said They're Ready to Die

Compiled by Lizzy Miles

These are statements made by hospice patient to me over the years indicating their readiness to die. I recognized there was a beauty in the variety of ways the patients chose to express their wishes.


  1. "If something is going to happen, let it happen. Life is getting less interesting as the days go by."

  2. "Sometimes I wonder why they've all gone and I'm still here."

  3. "When I go to bed I always wonder if this will be the time I die."

  4. "I've done it all I've seen it all. I could step out."

  5. "I'm ready to get up and jump around"

  6. "I'm 93 and anything can happen at any time. I have no qualms."

  7. "I was put on this earth to die. Today is just as good as tomorrow. We're all going to die. I can't control it."

  8. "Right now heavenly home is home. They tell me we'll see our loved ones and never have to say goodbye. That would be wonderful."

  9. "Get me out of here."

  10. "I'm waiting to ring the bell."
     
  11. "I know we're not going to be here forever. Hereafter is another home. It ain't no temporary home. It's permanent and there are no utility bills. No taxes."

  12. "I just want to go home."

  13. "My goal is to wonder how I fill the days until my days are gone."

  14. "I think it would be nice if every single person in the world had a button to push to say, 'okay I'm ready'."

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and regular contributor to Pallimed.org. Lizzy authored a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy currently has a Kickstarter campaign with life advice from hospice patients. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW.

Wednesday, February 8, 2017 by Lizzy Miles ·

Tuesday, February 7, 2017

ASCO Supports Concurrent Palliative Care for People with Advanced Cancer

by Christian Sinclair

The American Society of Clinical Oncology recently published the strongest call for concurrent palliative care in oncology. Released online on Halloween 2016, and published in the Journal of Clinical Oncology just last month, this Clinical Practice Guideline (CPG) should be in the pocket of every palliative care team as they meet with their oncology colleagues to collaborate on better care for patients.

The guideline holds more weight and expands the scope compared to the 2012 Provisional Clinical Opinion which emerged after the Temel article. In 2010, NEJM published a randomized control trial (RCT) of palliative care in metastatic non-small cell lung cancer (NSCLC). Many people (outside of palliative care and within the field) focused on the secondary outcome that palliative care might prolong life. That mania often overshadowed the primary outcome which demonstrated that palliative care provided concurrently could improve the quality of life (QOL) of patients, dispelling the common barrier because oncologists ‘already do this.’ (See Lyle Fettig’s excellent analysis here.)

So what changed between 2012 and 2016?
The 2012 PCO focused more on symptom burden and QOL, Instead of focusing on the survival benefit secondary outcome of Temel, they emphasized lack of harm. They did pull from other key studies including Bakitas (ENABLE), Brumley (in-home PC), Meyers (patient/caregiver dyads), and Rabow (outpatient clinics). The 2016 Expert Panel looked at 16 total studies to come up with the 6 areas of focused recommendations for the CPG, which are:

  • Effective symptom control
  • Practical models of palliative care
  • Defining palliative care in oncology
  • Relation of palliative care to existing/emerging services
  • Interventions for caregivers
  • Which patients benefit and at what time in illness

(A quick sidebar on definitions. Advanced cancer includes those with distant metastases, late-stage disease, or cancer that is life-limiting and/or with a prognosis of 6-24 months. There was a specific lack of focus on end of life as a criterion. ASCO defined palliative care in this guideline as: patient and family-centered care that optimizes quality of life by anticipating, preventing and treating suffering. Palliative care throughout the continuum of illness involves addressing physical intellectual emotional, social and spiritual needs, in addition to facilitating patient autonomy, access to information and choice.)

Will this new guideline change practice?
History may give you a reason to be cynical. Palliative care has been trying to get upstream with oncology for a LONG time. Surprisingly, the 2012 Provision Clinical Opinion and Temel study had no impact on the 2013 NCCN Guidelines for lung cancer (0 mentions of palliative care in 100 pages). But with studies like Al-Jawhari's Palliative Care in Stem Cell Transplantation and the growth of the Palliative Oncology conference, things may be changing. In addition, value-based payment models like the Oncology Care Model emphasize QOL.
Check out more Pallimed posts about oncology.
This week, I was able to present these guidelines at the Cancer Center Business Summit in a session dedicated to palliative care. The audience was primarily administrators and executives of community cancer centers wanting to talk about how to make palliative care more integrated into their care delivery, so I am hopeful there is a plowed field ready to plant some seeds of concurrent palliative care.

So go download this open access PDF, read it, make sure you are doing the best evidence palliative care you can do, discuss it with your palliative care colleagues and only THEN when you have your ducks in a row, go talk with your oncology peers and see what beautiful things you can create together.

Christian Sinclair, MD, FAAHPM is a palliative care doctor at the University of Kansas, editor of Pallimed, and really loves doing outpatient care in the oncology clinic.

Tuesday, February 7, 2017 by Christian Sinclair ·

Monday, February 6, 2017

Facing the Abyss: Planning for Death

By Kevin Dieter
“The hurrier you go, the behinder you get.”
Puzzlingly, the older and more “seasoned” I become, the more this bit of Amish wisdom is true. Especially when it comes to reading. I don’t have time to read. So, I was surprised when I found myself reading a recent publication from the National Quality Forum. However, as serendipity would have it, I am so glad I did. This publication, “Strategies for Change: A Collaborative Journey to Transform Advanced Illness Care“ had me hooked with the introduction. They had the beautiful audacity to suggest that physicians can and do have the ability to engage in conversation about the taboo (their term) subjects of death and mortality. As I read further, I was rewarded with a section devoted to “peaceful death and dying."
There has been debate about whether we truly live in a death denying culture. I believe that we do. Strongly so. Ernest Becker, in his Pulitzer prize winning book The Denial of Death, makes a compelling case that western societies are THE most death-denying in all of history. I see the results of this everyday. Our mortality, the inevitable finality of this life, is routinely disregarded as an essential contribution to the plan of care. The result is a series of squandered opportunities for healing and even transformation at the end of life. Very sick patients are referred to hospice without a prior discussion of goals of care and resuscitation status. Very sick patients travel from hospital to hospice house, often dying on route. But even more common is a never-ending procession of the dying patients and their loved ones who come to the end of life totally unprepared.
The poet W.H. Auden described death as “the rumble of distant thunder at a picnic.” It’s a brilliant metaphor. In my mind, in that scenario, we have 3 choices. The first choice is to totally ignore the thunder and hope that the storm blows north, but when the storm does hit, we will be totally unprepared and will be in some danger. The second choice is to recognize that the storm is coming, and to feel dread that it will totally ruin the remainder of the picnic, and yet do nothing to prepare for it. The third option is to recognize the threat that the thunder represents, to reorganize priorities and enjoy the good weather while you can, and then be packed and ready to seek shelter when the storm hits. I believe these metaphorical choices are similar to our society's attitude toward death. Most of us choose the first 2 options in regards to our own mortality.
The medicalization of death and dying, increasingly prevalent following World War II, has placed physicians in a difficult situation. Advancements in medical technology, the rise of consumerism, and the strengthening voice of patient autonomy have encouraged society to give us the responsibility of managing death, but for the most part we are poorly trained and generally not inclined to do so. We have, however, made significant progress in helping patients and their families negotiate the myriad of decisions and break points they encounter as their health fails and they traverse the healthcare system. This progress, through many variations of advance directives, follows the thread of “quality of life." I picture the patient as Indiana Jones, running through the jungle, dodging spears and traps, tumbling and rolling, and finally seeing the clearing in the trees. With the screen focused squarely on their face, I see the expression go from anticipation and relief to dread as they look down into the 10,000 foot abyss. Advanced Directives and Goals of Care discussions may get them through the jungle, but when it comes time to die, they are horribly unprepared. Very little time, they realize, was spent considering the quality of their death. It is time to die, and they haven’t imagined themselves on this death bed.
Dying patients and their loved ones today enter a space totally unfamiliar. One hundred years ago, most Americans grew up in household where death occurred and dying was more accepted as a part of daily life. Today, many of us live on the surface of life, existing from Tweet to Tweet. Richard Groves calls this “the demon of busyness.” Our attention span has been measured in seconds. Dying, and being with the dying, often requires sitting with uncertainty for long periods of time. We are very uncomfortable being there. It often does not sound, look or smell nice. Dying is the ultimate time of transition for those involved in the loving and caring for the dying. Without experience, and with difficulty accepting uncertainty, many patients and families come to the dying time unaware of what to expect, and worse, how to prepare.
We need to work much harder at preparing our patients for end-of-life. This is not our responsibility alone, however. There seems to be a grassroots movement developing that encourages open discussion about death and dying. Social media is exploding with new and increasingly innovative ways to initiate and encourage this dialogue. The demon of busyness is being met head on by card games, like “GoWish”, and interactive art such as the “Before I Die “ walls. These social instruments allow our society to begin the uneasy discussion about what has been taboo. In medieval times, the practice of “ memento mori,” a constant gentle reminder of their own mortality, served the purpose of improving the quality of their life,  But it also improved the quality of their death. They heard the thunder, they prepared for it, and they enjoyed the picnic.
We can, and should, be part of the discussion. We should initiate it and foster it. Consider hosting a Death Cafe or buy and distribute GoWish card games. Volunteer at a local hospice doing bedside vigils, and write about what you learn. We can become more comfortable in talking about quality of death. We can improve the quality of our patients lives by helping them consider the quality of their dying. It will require that we  prepare ourselves by facing our own mortality.  We can and should be living and breathing versions of memento mori. We should not run and hide. Our death denying culture needs leaders to help our very sick and dying face the abyss. If not us, then who…?
Kevin Dieter MD FAAHPM has been a hospice doctor for 25 years. He is a passionate and increasingly vocal advocate for improving the care of the dying in this country. Not that he ever was, he is now rarely invited to cocktail parties. He lives and works in Cleveland, Ohio. You can find him on Twitter at @DieterDieterk52

Monday, February 6, 2017 by Pallimed Editor ·

Wednesday, February 1, 2017

We are mortal humans, we suffer and love, hopefully together, and then we each die.

by Drew Rosielle

I went into medicine because I thought it'd be something practical, to help people.

I majored in English and Religion at the University of Iowa in the early 1990s, and didn't have clear career plans. I guess I thought I'd become an English professor. Late in my undergraduate days I was enamored with the more experimental sides of 20th Century poetry (Gertrude Stein, Lorine Niedecker) and figured I'd go on to grad school. To make ends meet in college, I got a part-time job cleaning a group home overnight for teenage boys with profound developmental disabilities. I liked to stay up late, and I could clean the house overnight and listen to the BBC World Service. And smoke (gosh I wish smoking cigarettes was a benign activity - so many pleasant memories). In the morning a couple other employees would come over, we'd get the boys up, dressed, fed, teeth-brushed, and off to school.

By my senior year, I was an assistant group home manager, and found myself in the surprising position of really, really liking working with these kids: dressing, feeding, toileting them, helping them do the few things they seemed to enjoy, trying to make meaningful connections with them. The latter was difficult - they all had autism (along with other developmental challenges), and several of them weren't verbal, or were so very rarely.

We played music constantly in the home (mostly for the pleasure of those of us who worked there), and one of my warmest memories of that time in my life was one of the boys seemingly spontaneously coming up to me, grabbing my head and gently bringing my forehead to his as if he wanted to privately confer about an important matter - it was a brief but distinctly intimate gesture - and muttering to me "She's a brick...house," then walking away.

I graduated, traveled, moved up to Minneapolis, got another job working with folks with developmental disabilities, and was contemplating applying to graduate school, when I had a sort of career crisis, and realized I didn't want to be an academic, and instead wanted to do something tangible and practical, that helped people. Undeniably, my experience caring for those boys was critical to my decision. However it wasn't otherwise a well-thought out, or particularly sophisticated decision, and I don't have much insight otherwise into why I decided to try to go into medicine. No one in my family is a doctor, or even in health care.

I wanted to help people, in a straight-forward, material way. It seems naive 20+ years later, but only a little. That human connection I felt with those young men whose lives were very, very different than mine, turned out to be a good guidepost for me.

There are many pleasures to being a doctor. One of the deepest, and most abiding, is the sheer breadth, depth, and diversity of people you meet, and share a form of intimacy. It's a professional form of intimacy, to be sure, proscribed by the duties and obligations and boundaries of our profession, but nonetheless at times profound. You hear about and witness, sometimes glancingly, but sometimes in great detail - deep, important, and very personal aspects of people's lives. Their hopes, joys, failures, traumas, sins, sex lives, fears, weaknesses; their beliefs about what matters most in the universe, what they love the most, what they can and can't live without.

You try not to love or judge your patients too much, you need to stand apart a little, watch them, seek to understand and appreciate, but not love or judge too much, but it's tough not to. There are your patients, and their families, going through things you can only imagine, and it's all just right there in your face, impossible to ignore. 

Doing this, you quickly realize, and are reminded on a near daily basis, that the things you find virtuous, and laudable, and good - poise, grace, pugnaciousness, grit, humor, humility, gratitude, self-sacrifice - know no color, creed, language, gender identity, national origin, income bracket, faith, insurance status, ambulatory status, employment history, etc. Who you are, where you're from, who you love, how you love - these things are important to be sure - but the work of medicine is a constant reminder to me that no one group in this sense monopolizes any of these virtues.

Every door you open, you are constantly, palpably, in the most concrete and non-abstract way,  confronted with the common humanity you share with your patient & their family - the sick and suffering body, the sick and suffering person (and those who care for them). Whether it's the newly arrived Karen refugee, or the Wells Fargo executive with a very bad cancer.

We are mortal humans, we suffer and love, hopefully together, and then we each die.

I'm not religious, but I think I know what some people mean when they describe healthcaring as God's work.

I'm writing this because of the current political scene in the US. Pallimed has avoided politics, at least partisan politics in the US. I personally care a lot about politics, including partisan politics, but Christian and I feel good about that decision to not go there. It's not what the blog is supposed to be about.  But we've always discussed ethics and morality - it's central to healthcare and medicine - our beloved (science-informed!) healing art that has called us to help our fellow mortals. Christian and I have been talking, and we wanted to speak up and be very clear about our moral vision as individuals, citizens, health care professionals, and the founders of this blog we love so much.

We think people in the US can and should and will argue, in good faith, about the best policy solutions to our nation's challenges.

However, we are appalled, and frightened, that seemingly the very fundamentals of our democratic society are being undermined, our democratic institutions are being eroded, and certain cultural groups are being singled out for suspicion and discrimination.

We reject the idea that some people's lives matter more than others. Refugee lives matter too, as do Black, Muslim, immigrant, brown, native, queer, disabled, poor, uninsured, unemployed, addicted, paroled, and imprisoned lives. We should love our neighbors as ourselves, and do the deep moral and internal work it requires to come to grips with the deepest human truth out there - that everyone on this planet is our neighbor. The moral mandate of medicine requires us to stand up and stand with the powerless & the persecuted: they are our neighbors, we all do better when we all do better.

We reject the lie that we don't have the resources or the wherewithal in the US to care for the refugee, the sick, the bereft, the homeless, the dispossessed, the persecuted, the alone, the disabled, the penniless, the waterless.

The US is imperfect, but the balance of powers structure has served us well. Any likely alternative will be a human catastrophe. Elected and public officials are here to serve we the people, the citizens and residents of the US -  all of us.

May we all live knowing true peace and justice,

Drew

Wednesday, February 1, 2017 by Drew Rosielle MD ·

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