Monday, October 17, 2016

"Incompatible With Life," Compatible With Love: Perinatal Hospice and Palliative Care

by Amy Kuebelbeck

It's a relatively new phenomenon: With advances in prenatal testing, some parents who are happily anticipating the birth of their baby instead receive the devastating news that their baby is expected to die.

Then what? Often, the default recommendation is to terminate the pregnancy and try again. A growing number of parents prefer to continue their pregnancies and embrace their babies' lives for however long they might last, even if that time is only before birth. But a distressing number of these parents report feeling abandoned by their caregivers and even chastised and criticized for choosing this path.[1]

As one mother told me, “The only option offered was termination. In spite of us insisting we wanted to continue this pregnancy, the medical personnel who handled us on the day of the diagnosis didn’t offer us any other help. They kept emphasizing that ‘no one carries a baby with this condition’ and how terrible it would be. They kept saying that Trisomy 18 is ‘incompatible with life.’ The pressure to terminate was tremendous.”[2]

In response to the needs of parents like this, a new model of care has been quietly growing. First proposed in the medical literature in 1997[3] and then making its debut in the American Journal of Obstetrics and Gynecology in 2001,[4] the concept was dubbed perinatal hospice. It integrates the philosophy and expertise of hospice and palliative care with best practices in perinatal bereavement care for miscarriage, stillbirth, or infant death.

Perinatal hospice is not a place. It is an extra layer of multidisciplinary support that can easily be incorporated into standard pregnancy and birth care. This support begins at the time of a life-limiting prenatal diagnosis and continues throughout the remainder of the pregnancy and the baby's birth, life, and death. It can be thought of as "hospice in the womb" (including birth planning, preliminary medical decision-making before the baby is born, and support for anticipatory grief) as well as more traditional hospice and palliative care at home after birth (if the baby lives longer than a few minutes or hours). It includes essential newborn care such as warmth, comfort, and nutrition. Rather than "doing nothing," perinatal hospice is an extraordinary form of physical and emotional care that honors the baby as well as the family.

As the concept of perinatal hospice has spread, and as palliative care has become a medical subspecialty in its own right, this concept has also come to be called perinatal palliative care. Like palliative care for adults, perinatal palliative care is not limited to end-of-life care and can include medical treatments intended to improve the baby's life. This is especially important for life-limiting conditions such as Trisomy 13 or Trisomy 18 that are often dismissed as "incompatible with life," a "lethal diagnosis," or a "fatal fetal abnormality," but for which extended survival is possible.[5] Perinatal palliative care allows these babies to lead the way. For many parents, even a life that lasts only a few minutes after birth is profoundly meaningful. In addition, for parents who are given a stark choice between termination or aggressive medical intervention that would be unduly burdensome to the baby, perinatal palliative care offers a third way.

This innovative and compassionate model of care aligns well with core principles of palliative care, including these from the World Health Organization: Palliative care "affirms life and regards dying as a normal process" and "intends neither to hasten or postpone death."[6] As one Australian neonatologist and bioethicist wrote, "We are now reaching palliative care's final frontier — the needs of infants and foetuses who are dying before they have even been born."[7]

This concept not only draws upon the field of hospice and palliative care, it incorporates advances in perinatal bereavement care that also have developed over the last few decades. For many years, the death of a baby was considered taboo. Parents were forbidden from even seeing a newborn who was stillborn or dying and were told to "forget about it" and have another one. Babies' bodies often were disposed of as medical waste. Although caregivers may have been motivated by compassion, in hopes of protecting parents (and perhaps themselves) from emotional pain, some parents eventually stepped forward to say that this pretend-it-never-happened approach was deeply damaging. Together with caregivers, they worked together to develop practices that would foster healthier grief.[8] Many hospitals have now adopted best practices for perinatal bereavement care, including encouraging parents to see and hold their baby if they wish; assisting parents in collecting keepsakes such as footprints and photographs;[9] providing respectful care of the baby's body after death; and acknowledging the baby as a unique and irreplaceable child.

Since the concept was proposed two decades ago, perinatal hospice and palliative care has had exponential growth. More than 280 support programs in the U.S. and around the world are now listed at, the website I founded in 2006. Protocols and training have been developed.[10] Growing numbers of parents are choosing to continue their pregnancies when perinatal hospice care is offered—in one study, as high as 85 percent.[11] New prenatal testing practice guidelines from the American College of Obstetricians and Gynecologists and the Society for Maternal-Fetal Medicine recommend that post-diagnosis counseling for parents should include the option of perinatal palliative care.[12] And according to a literature review published in the Journal of Obstetric, Gynecologic, and Neonatal Nursing, "The science suggests that perinatal palliative care is welcomed by parents and is a medically safe and viable option."[13]

In the words of another mother, "By giving my son the protection of my body to face the announced death, I was giving him life, all of his life, so that it would be recorded in our family, in all of our history, and in the hearts of each of us. It wasn’t a morbid walk but a formidable surge of love."[14]

We welcome your thoughts about this in the upcoming #HPM tweetchat on Wednesday October 19, when we will discuss the following questions:

T1 - Are perinatal hospice/palliative care services available at your institution/agency, or in your area?
T2 - What barriers do you see to providing perinatal hospice/palliative care services? What tools would be most useful to overcome those?
T3 - What strengths do #hpm professionals bring to the care of seriously ill babies both before and after birth? What would you like to see happen in this field next?

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 10/19/2016 - 9p ET/ 6p PT
Host: Amy Kuebelbeck

 and go to for up to date info.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using for ease of following. You can also check out the new site dedicated to #hpm chat -

For more on past tweetchats, see our archive here.

Amy Kuebelbeck, MA, a former reporter and editor for The Associated Press and other news organizations, is lead author of A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief (Johns Hopkins University Press, 2011.)  She can be reached on Twitter at @PerinatalHospic.

  1. Sumner LH. Taking Palliative Care into Pregnancy and Perinatal Loss. National Perinatal Association Bulletin. 2004 Fall; 5(2).
  2. Kuebelbeck A. and Davis DL. A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief (Johns Hopkins University Press, 2011), p. 23.
  3. Calhoun BC, Hoeldtke NJ, Hinson RM, Judge KM. Perinatal hospice: should all centers have this service? Neonatal Netw. 1997 Sep;16(6):101-2.
  4. Hoeldtke NJ, Calhoun BC. Perinatal hospice. Am J Obstet Gynecol. 2001 Sep;185(3):525-9.
  5. Linebarger J. Trisomy 13 and 18: When a lethal condition is no longer lethal. Pallimed: A Hospice & Palliative Medicine Blog, Aug. 15, 2016.
  6. World Health Organization definition of palliative care:
  7. Wilkinson D. "We need palliative care for babies facing certain death." The Conversation (Australia), July 15, 2013. 
  8. See Share Pregnancy & Infant Loss Support, founded in 1977, and Resolve Through Sharing Bereavement Services at Gundersen Health System, founded in 1981.
  9. See Now I Lay Me Down to Sleep, an international network of thousands of professional photographers who volunteer to provide grieving families with remembrance photography of their baby, founded in 2006. See also the pioneering work of photographer Todd Hochberg,
  10. See the Resources for Caregivers page at
  11. Calhoun BC, Napolitano P, Terry M, Bussey C, Hoeldtke NJ. Perinatal hospice: Comprehensive care for the family of the fetus with a lethal condition. J Reprod Med. 2003 May;48(5):343-8.
  12. American College of Obstetricians and Gynecologists and the Society of Maternal-Fetal Medicine Practice Bulletin No. 162: Prenatal Diagnostic Testing for Genetic Disorders. May 2016
  13. Wool C. State of the Science on Perinatal Palliative Care. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 2013 May/June; 42(3):372–382.
  14. Kuebelbeck and Davis, p. 343. Quotation translated from the book Un enfant pour l’éternité (A Child for Eternity) by Isabelle de Mézerac (Éditions du Rocher, 2004) and used with permission of the author. De Mézerac is the founder of Soins Palliatifs et Accompagnement en Maternité (SPAMA), a support association based in France.
Photo credit: iStock.

Monday, October 17, 2016 by Meredith MacMartin ·

Wednesday, October 12, 2016

Servant Leadership in Palliative Care

by Beth Fahlberg PhD, RN, CHPN and Robert Toomey, EdD, MA

Leaders are needed in palliative care who can provide the direction for current and future development. We recently wrote an article on Servant Leadership as a model for emerging Nurse leaders, which got us thinking about how Servant Leadership is a model that is also fitting for palliative care. There are many different models of leadership, yet the Servant Leadership model is particularly appropriate for palliative care.

Characteristics of servant leaders include: the ability to listen, empathy, healing, stewardship, commitment to the growth of others, and being skilled at building community.(1,2)

We recognize these characteristics in ourselves, and in the leaders who have shaped the field of Palliative Care. And while great strides have been made in advancing palliative care, as the IOM report states, there is much more work to be done “to achieve compassionate, affordable, sustainable, and effective care for all Americans”.(3)

These recommendations will not become reality without a concerted effort around palliative care leadership development. As stated in the ELNEC curriculum, “transformational leadership is critical to the development and innovation of palliative care.”(4)

Leadership is something that can be learned. It requires time, attention and mentorship. It is best developed when we have a conceptual model to guide us, such as Servant Leadership.

What is Servant Leadership?

Servant Leadership is a specific leadership philosophy and practice that, in short, is about serving first, then out of a serving approach, choosing to lead. Robert Greenleaf, former AT&T executive, coined the phrase ‘Servant Leadership’ in 1970 although this type of leadership has been around much longer than that.5 Some servant-leaders are people who are not well-known (can you think of quiet servant-leaders around you?). However, there are many other well-known servant-leaders. These include Jesus, Abraham Lincoln, Gandhi, Mother Teresa, Eleanor Roosevelt, Nelson Mandela and the Dalai Lama.

In palliative care, we see leaders emerging as they step up to meet needs. Soon, others follow and they find themselves in both formal and informal leadership positions. Rather than leading for power or recognition, they are leading to make a difference, so that those who are most vulnerable will get the care and support that is needed. This is Servant Leadership.

The study and practice of Servant Leadership is particularly well-suited to those who are emerging as new leaders, as the Servant Leadership Model provides a framework for their leadership development. At the same time, it can help those who have been leaders to become more effective and relevant. Greenleaf who described the ‘best test’ of Servant Leadership in the following way:

  • ‘Do those served grow as persons?
  • Do they, while being served, become healthier, wiser, freer, more autonomous, more likely themselves to become servants?
  • And, what is the effect on the least privileged in society?’ (Greenleaf 1970/1977, emphasis original)
This approach to leadership is consistent with palliative care philosophies and practices, in which we become “healthier, wiser and freer” was we learn to connect with, respect and care for diverse individuals and families, often when they are more vulnerable than ever before.

We should encourage and nurture that desire to serve, and find ways to connect these new leaders with the mentors, resources and support to foster their growth. It is particularly important to help them when it gets tough, as the palliative care landscape is fraught with the potential for controversy, ethical dilemmas, moral distress and compassion fatigue. In addition, those skilled in palliative care often find themselves advocating in challenging situations involving their own families and friends. In light of these threats to palliative care leadership, emerging leaders need to be supported as they learn to respond to these challenges constructively, professionally and ethically, while caring for and receiving care for their own needs.

Each one of us can lead in our own spheres of influence, using our expertise, talents, resources and networks. Our growth and potential as leaders will be more effective if we:
  1. Recognize what we do as leadership
  2. Are mindful and reflective as we lead
  3. Thoughtfully study leaders around us
  4. Connect with effective leaders who can mentor us
  5. Mentor emerging leaders, encouraging them to then mentor others
Applying Servant Leadership

Here are 5 ways to intentionally integrate Servant Leadership into your own work in palliative care: (1,6)
  1. Develop and communicate your vision for palliative care, to inspire, motivate and engage others.
  2. Listen and learn from those you are leading, so that you can address their needs, values and priorities, just as we do with patients and their families.
  3. Invest in others’ growth and development
  4. Give your power to others, but continue to have their backs.
  5. Cultivate community through strategic relationships, collaboration, hard work and celebration.
As we have described in this article, we believe that Servant Leadership can help new, emerging and even established leaders in the field become more effective, relevant leaders, as they strive to implement the IOM recommendations to promote quality care for patients and families everywhere.

We welcome your thoughts about this in the upcoming #HPM tweetchat on Wednesday October 12, when we will discuss the following questions:

T1. What leadership models and practices have been used in palliative care? What has worked? What has backfired, and how?

T2. What does “serve” mean to you in the context of palliative care? Who do you serve and how? Can you think of an example when your serving turned into leading?

T3. Can you relate to the Servant leadership characteristics and practices? Do you think that this is already being implemented in palliative care? Where could this be implemented more effectively?

T4. Do you think Servant Leadership can be helpful in promoting palliative care leadership development?


  1. Fahlberg BB, Toomey R. Servant leadership : A model for emerging nurse leaders. Nurs 2016. 2016:49-52.
  2. Spears LC. Practicing servant-leadership. Lead to Lead. 2004;2004(34):7-12. doi:10.1002/ltl.94.
  3. Institute of Medicine. Dying in America Improving Quality and Honoring Individual Preferences Near the End of Life.; 2014.
  4. End of Life Nursing Education Consortium. Advancing Leadership in Palliative Care Nursing. 2015.
  6. Boone LW, Makhani S. Five necessary attitudes of a servant leader. Rev Bus. 2013:83-97.

 and go to for up to date info.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using for ease of following. You can also check out the new site dedicated to #hpm chat -

For more on past tweetchats, see our archive here.

Beth Fahlberg PhD, RN, CHPN, @bethfahlberg, is the program director for Palliative Care @ UW-Madison Continuing Studies, developing and teaching innovative primary palliative care education for healthcare professionals and Her healthcare expertise includes aging and chronic, advanced, and serious illness, with a specific focus on heart failure palliative care. She has used the servant leadership model for over 20 years to guide her own leadership development, and incorporates it in her palliative care continuing education programs.

Robert Toomey, EdD; MA (Servant Leadership), @sunsetweet, directs programs in leadership and management at the University of Wisconsin-Madison, Division of Continuing Studies. He created and directs the Servant Leadership Certificate, a 5-day noncredit professional development program. His doctoral dissertation was about leadership, leader development, and learning environments. Robert and Beth will be collaborating in Spring 2017 to develop and teach a new blended learning continuing education course called Applied Servant Leadership in Nursing and Healthcare. Facebook page:

Wednesday, October 12, 2016 by Christian Sinclair ·

Wednesday, October 5, 2016

Five Tips for Effective Quality Improvement in Palliative Care (#3 will blow you away)

by Arif Kamal

Apologies for the “clickbait” title to the blog post; scouring the internet it seems that hyperbole works to get readers’ attention, certainly among entertainment sites and maybe increasingly within presidential politics. But it seems I had little choice; the fifth word of my title is “Quality”, which excites very few people. Bear with me, I promise this will get good.

Quality improvement is critical for palliative care organizations to build and sustain success within their clinical missions. Those who are watching and evaluating us, including patients, caregivers, health systems, regulators, and payers, are increasingly expecting a consistent product, delivered in close alignment with our growing evidence base. Further, rapid evolutions in the health care delivery and payment ecosystem require palliative care organizations to masterfully deploy quality improvement initiatives to solve problems. This requires a facile understanding of key steps needed to transition from identifying a problem to sustaining the change.

I’ve spent much of the past five years working as a Quality Improvement Coach for the American Society of Clinical Oncology’s (ASCO) Quality Training Program and ASCO/AAHPM Virtual Learning Collaborative and have come away with a few pearls that may be helpful. I also highly recommend “The Improvement Guide” by Langley et al., seen by many as the definitive textbook for healthcare quality improvement.

Below I offer Five Tips, by no means an exhaustive review, but a decent place to start.

Tip #1: Define the problem – Have a problem statement. This is one or two sentences that covers the Who, What, When, and Where of the problem (but not Why or How). Add a Harm to this statement to give it some punch. For example, “At the Mustard Clinic, from January through July 2016 the outpatient palliative care clinic no-show rate was 40%, missing critical opportunities for patients to receive timely symptom management, goals of care discussions, and possibly reduce time in the hospital during an unwanted readmission.”

Tip #2: Define the problem, again – Quality improvement committees are like family meetings, everyone’s inherently and not unexpectedly on different pages. When starting a quality improvement committee meeting, go around the room and ask everyone what they think the problem is you’re trying to solve. Marvel at the variation, and the “scope creep” and “scope drift” that occur over time. And then insert your excellent family meeting skills to get everyone on the same page. Lack of consensus on the specific problem will sink you.

Tip #3: Problem first, solutions (much) later – If your problem statement sounds something like this, “Because of high 30-day readmission rates at our hospital, we need more palliative care” then you’ve put the cart before the horse. All quality improvement starts with a specific, agreed-upon problem – not a solution. Starting a palliative care clinic, growing a palliative care service, applying disease-based triggers for consultation, etc. are all solutions. Implementing your solution is not the point of quality improvement, it’s solving a problem. Our practice is to not speak of solutions until at least the fourth meeting of our quality improvement committee.

Tip #4: Have an aim statement. What is the goal of your quality improvement project? Be specific, and think of the Who, What, When, and Where (but not How). For example, “By July 2017 we will decrease the outpatient palliative care clinic no-show rate to 25% at the Mustard Clinic.” You cannot yet know the “How”, because it’s dependent on the “Why”. And you can’t understand the “Why” without exploring the drivers of the problem, and the process by which the problem occurs.

Tip #5: Explore the “Why”. Be curious, open-minded, and solicit opinions of all stakeholders. The above fictitious problem of clinic no-show rates is complex, and not easy to solve (or people would have solved it already). If any part of your brain is saying, “Isn’t it obvious, what they need to do is….” then you’re like the 99% of us (very much including me) who must practice exploring the process, and getting input from all stakeholders. I could imagine this committee would solicit input from patients, caregivers, front desk staff, phone triage personnel, appointment schedulers, nurses, physicians, and financial counselors. Can you think of others? Drawing the process from start to finish is also very helpful. How does a patient go from being referred to the clinic to successfully coming? Where are all the places the process could go wrong? What data is needed to quantify the shortfalls? The point here is try not to go down a path of implementing solutions until you’re confident of the problem, have an understanding of where the process is breaking down, and have tailored the solution to that breakdown.

I’ll be speaking more about this topic, and will be joined by several other national leaders including Drs. Diane Meier, Steve Pantilat, and Phil Rodgers during the 2nd Annual Palliative Care Quality Matters Conference on October 20th from 12-5PM EST. The Conference is hosted by the Global Palliative Care Quality Alliance (, a multi-site, volunteer collaboration of healthcare organizations with a passion for improving quality in palliative care.

The virtual conference presented via Webex is open to all colleagues with complimentary registration and CME/CNE. Register at

Additionally, this Wednesday evening October 5th at 9PM EST/6PM PST I’ll be hosting a Tweetchat. Would love your input on the following questions:

T1: What makes performing quality improvement challenging in palliative care and hospice?

T2: Most quality improvement projects don’t work. Name an epic failure you were part of. What did you learn?

T3: Change my Top Five to a Top Ten list. What tips could you add?

T4: How could we help each other in our field do better quality improvement? What’s the role of AAHPM, HPNA, NHPCO and other membership societies?

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 10/5/2016 - 9p ET/ 6p PT
Host: Dr. Arif Kamal @arifkamalMD

 and go to for up to date info.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using for ease of following. You can also check out the new site dedicated to #hpm chat -

For more on past tweetchats, see our archive here.

Arif Kamal MD MBA MHS is the Physician Quality and Outcomes Officer and Assistant Professor of Medicine (Oncology and Palliative Care) at Duke University. He is a diehard Kansas City Chiefs football fan, which has prepared him for discussions regarding futility and complicated grief with his patients.

Wednesday, October 5, 2016 by Meredith MacMartin ·

Thursday, September 29, 2016

Mindfully Conquering Burnout and Cultivating Self-Compassion

by Robert Gerard

Some thoughts on a transformative program recently completed at Upaya Zen Center

I stared at this Tweet because I could not fathom how everybody could be this happy.

Everyone appeared to sparkle with joy, and I felt an astonishing resentment and discontent by what they must have accomplished. This Tweet rapidly crystallized an awareness that I had not been taking care of myself. I feared my capacity to feel happiness for others had vanished for keeps. There was no denying it was a sign of burnout. I had become physically tired at the end of the work day. Time and again I was emotionally drained and needed to sit in my car for several minutes before leaving the hospital just to regain my composure. I sensed, and my palliative care team confirmed, I was periodically grouchy and irritable. I had not been taking vacations regularly throughout the year. The worst blow was intermittently missing my beloved choir rehearsals on Tuesday nights because I couldn’t catch up with notes and patient followups.

Professional burnout is real. It is a burden that does not retreat. One can feel physically, emotionally, and mentally sapped. It creeps into your ordinary thoughts leaving one feeling insecure about job performance and clouds the meaning of your work. In retrospect, it had been eroding my life. I explored the program link and hoped I could address my self neglect: Professional Training Program for Clinicians in Compassionate Care of the Seriously Ill and Dying.

I recalled seeing Dr Joan Halifax at the 2010 Boston AAHPM assembly and remember how passionately she spoke about compassion and end of life care. The psychosocial, existential, and spiritual aspects of providing end of life care are essential. Clustering these elements, learning in an intimate environment, and being fully secluded from the outside world was very appealing. I found the link to the Upaya podcast recorded from the 2015 conference by presenters  Dr Tony Back and Dr Cynda Hylton Rushton. I was fascinated by their sensitivity and focus on the topic Engaged, Not Attached: Being with Dying. I could hear their wisdom with full attention. They were knowledgeable about palliative care and end of life care. They openly explored the roots of compassion and how caregivers face tremendous anguish and helplessness. They explored how the body informs us when it is stressed and how we ignore and override those signals. This presentation refocused my intention to take better care of myself. I immediately requested time off from work to attend the following year’s conference.

Fast forward to the Albuquerque airport baggage carousels where I met a group of excited and eager attendees boarding the same shuttle to Upaya’s campus, above the town of Santa Fe, NM. The campus contains what is described as a Zen Buddhist practice, service, and training center. I was entering a new terrain in the high desert, far away from my suburban Maryland hospital palliative care practice. Upon arriving, I was warmly received by the resident staff, easily recognized not only by their simple black garb but also by their mindfulness to the task at hand.

I knew setting out, this journey would travel deeply into the roots of my professional work found in AAHPM assemblies, EPEC trainings, and professional retreats at the Center for Mind Body Medicine I attended. I didn’t realize it would also repair my insight, rehabilitate my empathy, and cultivate compassion and mindfulness so effectively.

What set this program apart from formal educational training was the thoughtful pacing of work sessions that also permitted time for self-reflection. We were obligated to remain in silence outside of work sessions. This was suitable to accomplish inner work but it did push me to the edge of my comfort zone. Finding and exploring this “edge” was a theme our faculty visited and I experienced throughout the week. By the end of the program I declared these 54 CME credits to be the most demanding I’ve earned since medical school and residency training.

I,  along with 60 other end of life professionals, gathered in the zendo (meditation hall) every morning for daily guided meditations with Roshi Joan. These remarkable meditations can be found in her book: Being with Dying.  She led us to a space where we could reflect on loving kindness, compassion, sympathetic joy, and equanimity. We also were led to explore our own mortality or practice visualizing the taking in of suffering and giving out of comfort to those around us.

The daily 30 minute yoga practice physically challenged my body and helped to calm my mind. The daily meeting with a council strengthened connections with a wonderful group of health care providers and gave me space and time to voice feelings. We had opportunities to work in small groups throughout the week for thought provoking exercises. The late afternoon meditation gathering in the zendo gave me time to peacefully center myself after a long day of didactic and reflection sessions. The evening wrap-up helped reinforce what I had experienced during the day. The days were very long but I didn’t feel fatigued.

During the week, the neuroscience didactic sessions explored many interesting topics like neuroplasticity. I learned how my mind’s default is to aimlessly roam like a guppy and naturally hard wire the effect of distress on our body. It became apparent through scientific studies that training the mind with meditation and mindfulness can increase happiness and reduce self imposed physical distress. I caught on that my mind frequently overstimulates the parasympathetic branches of the vagus nerve and muffles my voice and breath in times of stress. After several days of meditation and reflection, our group was prepared to spend intensive time with a challenging ethical case that would touch upon moral distress, and moral outrage.

Not unexpectedly, it was a challenge to leave a supportive and nurturing retreat and to re-enter the outside world as I knew it. Throughout the week and beyond, I began to feel more comfortable in my body. I could begin to understand the benefits of a frequently repeated phrase during the week, “strong back and soft front” that rewards vulnerability with strength and support. All too often in life, I have carried a defended front and a burdened back.
After returning to work, I learned to be more mindful of physical feelings of distress that I had ignored before. I gave myself permission to pause and set my intention in the moments before entering a room to engage a patient or family. More than once in my career, I sailed into a room without a hand on the helm and managed to lose trust of a patient or family simply by not being attuned and grounded. Our ethical case presentation at Upaya helped me look at hospital based dilemmas with a different lens and focus.

I can disclose I have a restored energy, renewed passion for end of life work, and a more spacious place for inner work.  Although I am still prone to the stressors of work, I now recognize the signs of burnout quickly and address them. And now looking back at the retreat Tweet, I’m filled with appreciation, gratitude, and joy!

I realize that this self-care is as essential to my professional work as the sun is to a garden. I’m trying to make these few simple changes permanent fixtures because life itself hangs by a breath.

Robert Gerard is a palliative care physician with the Mid-Atlantic Permanente Medical Group. He is the physician lead for Schwartz Center Rounds at Holy Cross Hospital, Silver Spring Maryland and can be followed on Twitter @rhgerard. He finds work/life balance and rejuvenation as a singer with the National Philharmonic Orchestra and Chorale and is looking forward to an exciting season of concerts beginning November 5th, 2016.

Thursday, September 29, 2016 by Pallimed Editor ·

Wednesday, September 28, 2016

Grief is Not Self-Pity: Joan Didion’s The Year of Magical Thinking

by Vivian Lam

“Life changes fast.
Life changes in the instant.
You sit down to dinner and life as you know it ends. 
The question of self-pity.”

When does grief become “self-pity”? What is the “proper” way to grieve?

Joan Didion begins writing what would become The Year of Magical Thinking a few days after her husband, John Dunne, dies from a heart attack. Coupled with the mounting health crises of her daughter, Quintana, Didion’s world is thrown out of joint. In the ongoing aftermath of these tragedies, Didion, acclaimed novelist and literary journalist, copes by doing what she has done all her life—write. But this time, her husband is no longer the patient proofreader working beside her, but a ghostly absence she can’t stop turning back to. She tests the threshold where “normal” grief crosses into the “pathological,” picks apart medical and societal indifference towards the patient and the survivor, scrutinizes a vast scientific and literary trove on death and mourning. But in spite of her clinical self-awareness and the terse detachment of her reporting, she can’t break out of an irrational “magical thinking” that sends her down a spiral of uncertainty and regret.

What makes The Year of Magical Thinking a quintessential work in the bereavement canon is not just her analytical prowess, but the strength she finds in vulnerability. What results from her attempts to “come to terms” and “handle things” is an extended elegy to grief and change. In the waves of raw despair that belie how lost and isolated death has left her, Didion demonstrates a resilience that, though failing to triumph, offers illuminating insights on the experience of grief and the insufficiency of our traditional views towards the process of grieving.

We might even find it wrong to consider grief a process in the first place; for Didion, grief comes as a state of being.
In an interview with New York Magazine, Didion states that one of the main reasons why she wrote this account was to “bring death close.” In direct opposition to the invisibility of death in Western society, Didion conducts a form of investigative reporting on grief—the primary case being herself. With repetitive and desperate precision, she reconstructs and deconstructs the moments leading up to her husband slumping onto the dinner table, and is frustrated by her cloudy memory of following the ambulance only to return home alone with a bag of bloodied clothes. She pores over the apartment doormen time log for the night of December 30, and wonders “Was that ever a heartbeat or was it just electricity” (81)? She jumps back and forth in time, placing all events relative to her husband’s death with an unshakable guilt and unanswerable “what if’s.”

Directly opposing her attempts to gather information and regain control of the situation, Didion is plagued by an “irrational” disengagement with reality. “Magical thinking” refers to a belief that an action or object can influence or change the outcome of an otherwise unrelated course of events. Some might call it “superstitious,” and others might call it “prayer.” For Didion, magical thinking comprises her illogical belief that her husband was “coming back,” and that she would yet be able to save him and “reverse the narrative” (35). She balks at the hospital’s request to donate his eyes and at her own reluctance to donate his shoes, for “[h]ow could he come back if they took his organs, how could he come back if he had no shoes" (41)? She links her resistance against putting her daughter on a trach by “the same fund of superstition” that “she could be fine in the morning, ready to eat, talk, go home” (125).

Compounding these frustrations is what she calls “the vortex effect” (107)—a kind of PTSD triggered by familiar details that send her time travelling back to when her daughter was three years old, to when she and her husband went to dinner at Morton’s every week. “I cannot count the days on which I found myself driving abruptly blinded by tears. The Santa Ana was back. The jacaranda was back” (107). She repeatedly berates herself for being so easily sideswiped by these memories, to not be able to even “get as far as Rite Aid” without being swept in another deluge of regret (121).

So does Didion note the difference between grief and mourning:

“Until now I had been able only to grieve…Grief was passive. Grief happened. Mourning, the act of dealing with grief, required attention. Until now there had been every urgent reason to obliterate any attention that might otherwise have been paid, banish the thought, bring fresh adrenaline to bear on the crisis of the day. I had passed an entire season during which the only words I allowed myself to truly hear were recorded: Wel-come to U-C–L-A.” (143).

She condenses grief into textual form, expressing a fragmentation of thought and experience of reality that exposes a vulnerability she struggles to come to terms with.
Facing these mounting crises, Didion falls back to what she “had been trained since childhood” to do: “read, learn, work it up, go to the literature. Information was control” (44). She references a robust range of sources on death and grief from history and sociology (e.g., Sherwin Nuland’s How We Die, Phillipe Aries’ Western Attitudes Towards Death), psychology (e.g., Freud’s “Mourning and Melancholia”), classic literature (e.g., CS Lewis’ A Grief Observed, Thomas Mann’s The Magic Mountain), poetry (e.g., Auden’s “Funeral Blues”), “professional literature” (e.g., the Harvard Child Bereavement Study, The Merck Manual), and a number of other medical papers. Emily Post’s 1922 book of etiquette, far from being outdated, resonated with her because she “wrote in a world in which mourning was still recognized, allowed and not hidden from view” (57). She was taken by its practicality, as opposed to vague prognostications of abnormality.

Of particular salience was John Murray’s Intensive Care: A Doctor’s Journal, from which she “learned much that proved useful in…[her] daily dealing with the ICU doctors…” (102). So does she know that she has “made headway when a doctor to whom you had made one or another suggested presented, a day later, the plan as his own” (103). For the duration of her daughter’s hospitalization and transfer, Didion expresses a distinct distrust and dissatisfaction with the medical professionals she dealt with. In one particular instance, she argues with a doctor on the day they decided to do a tracheostomy for her daughter. She questions their rationale (“The rule at Duke [for intubation period] was also a week,” “It’s already on schedule,” “Everyone on the neuro units got a trach”), balks at their assumption that the basis for her resistance was the scar (“They were doctors…I was not. Ergo, any concerns I had must be cosmetic, frivolous”), that she didn’t notice that her daughter was taken off the EEG (“Maybe I didn’t notice that? My only child? My unconscious child?”) (123-125). She criticizes the vaguely placating status reports of the medical personnel with a kind of incredulous, dark humor:
“...I was told by a physician's assistant that after his weekend absence he had come in that morning to find Quintana's condition 'encouraging.' I asked what exactly had encouraged him about her condition when he came in that morning. 'She was still alive,' the physician's assistant said” (66).

What does “encouraging” mean? Does “leaving the table” in uncertain condition imply improvement from “not sure at all she would leave the table”? The “gilded-boy story,” used as a memory and comprehension test, “seemed to represent, in its utter impenetrability and apparent disregard for the sensitivity of the patient, the entire situation with which [she] was faced” (105). The condescension and indifference she faces in her attempt to stay informed and participate in her daughter’s care, leads her to so deep an isolation that, in a symbolic assertion of her competence, “it did not immediately occur to [her] that for the mother of a patient to show up at the hospital wearing blue cotton scrubs could only be viewed as a suspicious violation of boundaries” (105).

It is not until she had read the autopsy report that she “[began] to believe what [she] had been repeatedly told: nothing [they] had done or not done had either caused or could have prevented his death” (206). This didn’t mean that she had finally “overcome” her grief, or could now walk without the chains of memory. She still continues to reverse time and get lost in a vortex of memories. But now, instead of “trying to substitute an alternate real” she was “trying to reconstruct the collision, the collapse of the dead star” (183). She, like other survivors, still continues to “look back and see omens” and continue “[l]iving by symbols” because of the nagging feeling that she has not “sufficiently appreciated” something (152). It is the tragedy of knowing that we do not have the power to confidently say “You’re safe. I’m here” (219).

What Didion comes to realize is the insufficiency of words to grant meaning to a senseless event. The safeguard of literature can never sufficiently prepare her for the experience of grief. Nor can the assurances of her doctors ever remedy the helplessness she faces with death. Writing cannot provide sufficient catharsis to erase the “look of extreme vulnerability, nakedness, [and] openness” that mark people who have lost someone, and “think themselves invisible” (74-75). She comes to realize that the words that haunt her (“And then—gone,” “You’re safe, I’m here,” “For once in your life just let it go”) form a kind of tragic poetry that cannot be analyzed. As Didion states, the difference between “grief as we imagine it and grief as it is” lies in “the unending absence that follows, the void, the very opposite of meaning, the relentless succession of moments during which we will confront the experience of meaninglessness itself” (189). Words cannot fill the void.

And yet, a year and three days after starting this account, she realizes that she does not want to finish it. “The craziness is receding but no clarity is taking its place. I look for resolution and find none” (224). We refuse to “[l]et them become the photograph on the table…the name on the trust accounts” and “keep them dead” (224). We are told to let go in hopes that the ghosts will stop haunting us, but to do this feels more like betrayal.
Didion does not come to a conclusion. She finds no positive affirmation or overarching meaning. We are left with an awareness of the “ordinary instants” that pass uneventfully in our lives as we wait for the world to suddenly shift beneath our feet. Grief shouldn’t have to become self-pity. In the isolation of the void, where we must undo old habits and swallow the mundane discoveries we save for one listening ear, we are left only with ourselves (195). But even in a world where the divide between life and death has been pushed offstage, who are we to banish grief simply because it reminds us of the finitude of our own ordinary days? We can still support each other in the face of that void—to simply “bake a ham,” “drop it by the house,” and “go to the funeral” in solidarity (61). We must open ourselves to grief, if only to remind ourselves that we are never alone.

What Didion has built is a testament to the fragility of our lives, and to our resilience to continue on. We continue to carry these ghosts with us, and we are transformed by keeping them close to our hearts. "Leis go brown, tectonic plates shift, deep currents move, islands vanish, rooms get forgotten” (227). Life changes in an instant. The world moves on.

But memory never has to fade.

For further reading:
-Blue Nights – What could be thought of as Didion’s sequel to The Year of Magical Thinking, recounting the death of her daughter, Quintana.
-The stage adaptation of The Year of Magical Thinking
-Interview with the “young writer” she refuses to talk to on page 168
-Interview with Katie Couric on the memoir and the grieving process

Vivian Lam is a student at Stanford University 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.

Wednesday, September 28, 2016 by Pallimed Editor ·

Thursday, September 8, 2016

Number One Palliative-Themed Movie? Wit

by Amy Clarkson

(Margaret Edson, author of Wit, will be speaking at the 2016 Palliative Care in Oncology Symposium, so we are sharing this review from our Arts and Humanities site, originally published in 2009. - Ed.)

There are many movies out there with palliative themes, as we can attest to with our top 10 movie post, which garnered much comments. One of my all time favorites, also made number 1 on our top 10 palliative-themed movies list; Wit.

I first saw this movie in medical school. In fact, according to the IMDb, this movie is known for being shown at medical schools as an example of how not to practice medicine. Also, the plot deals with dying, so it's all the more relevant to those of us who care for dying patients.

The plot is this: An English lit professor, known for her high expectations and little compassion in the classroom is diagnosed with ovarian cancer. The movie shows her experiences from diagnosis to death. Her last weeks are spent in the hospital, undergoing rigorous treatment. She is alone, except for the nurses, attending and fellow who treat her. Through her reflections and memories there is a definite parallel between her heartless days teaching and the heartless medical system she is now in.

The movie is based on a play by Margaret Edson and this monologue, play-like background is the inspiration for the screenplay, making it unique. The soundtrack is simple with only 4 pieces listed. My favorite piece is "Speigel im speigel" or 'Mirror in a mirror' by Arvo Part. It is played often in the movie, the simplicity of the cello and piano is also melancholy, leaving the viewer with the feeling of being alone, just as the main character is.

I love this movie not just for it's ability to pierce me with its sad realities of the medical world, but also for it's subtle sub theme about death. All through out the movie we are bombarded with a certain text from a John Donne's Holy Sonnet 10. The main character was a John Donne expert and specifically recalls the punctuation differences pointed out at the end of this poem by her mentor.

The last line of the sonnet entitled "Death be not proud" is "And death shall be no more, Death thou shalt die." The version our main character had found was different "And Death shall be no more; Death thou shalt die!"

Here is the discussion with her mentor on the punctuation differences, talking about the version with the comma: "Nothing but a breath, a comma separates life from life everlasting. Very simple, really. With the original punctuation restored Death is no longer something to act out on a stage with exclamation marks. It is a comma. A pause. In this way, the uncompromising way one learns something from the poem, wouldn't you say? Life, death, soul, God, past present. Not insuperable barriers. Not semi-colons. Just a comma. "

If only the main character's death could have been so simple. Yet of the many ways death is portrayed in films, her portrayal is haunting. No one should have to die like this, without dignity and respect (ignoring her DNR)...alone in a hospital. Yet it is haunting, because of how real this type of death is. It is the antitheses of a palliative care death.

I've included a clip of our main character (Emma Thompson) thinking out loud. It's a lovely introspection of what's she's dealing with. Another clip has been taken down from YouTube, but when originally posted, it is a beautiful moment when our character actually gets her one and only visitor, her old hard-nosed mentor. The simplicity of human connection in the clip, with the Arvo Part soundtrack accompanying, makes me tear up every time.
I'd also suggest reading John Donne's Holy Sonnet 10 "Death be not proud" (This version uses a semi-colon and no exclamation!)

Dr. Amy Clarkson is a hospice and palliative care doctor in Pratt, KS, and former co-editor of the Pallimed: Arts and Humanities Site.

Image Credit: Still Image from Wit

If you are interested in writing reviews for old or new books and films, please check out our Pallimed Opportunities page. - Ed.

Thursday, September 8, 2016 by Amy Clarkson ·

Wednesday, September 7, 2016

What Makes Up High-Quality Primary Palliative Care in Oncology?

by Ross Albert

I'm surprised that I’m not hearing more about the recent ‘Guidance Statement’ put out by the collaboration of ASCO and AAHPM on “Defining High-Quality Palliative Care in Oncology Practice.” (OPEN ACCESS PDF) It’s a report that provides some very interesting insight into what pieces of primary palliative care should be part of general medical oncologists’ practice.

When I read it the report, I was pleased to see that it was published in ASCO’s journal, and I noted the impressive list of authors. My eyes briefly glazed over as the discussion moved to Delphi methodology, but a few quick Wikipedia searches on study-design later, I was back on track, diving into the data. I am, of course speaking about that in jest—these statements and guidelines need to be rigorous and they need to be done with well-defined methodology.

The group essentially did the following:

  1. Gather a bunch of very smart oncologists and palliative care professionals.
  2. Give them a list of nearly 1000 statements of specific actions that might be part of high-quality primary palliative care practice in oncology.
  3. Have them decide if those items are definitely/maybe/not part of primary palliative care that oncologists should regularly be doing.

The panel also grouped these practices into “Domains” for organization: End-of-Life Care, Communication and Shared Decision Making, Advance Care Planning, Appropriate Palliative Care and Hospice Referral, Symptom Assessment and Management, Carer Support, Coordination and Continuity of Care, Psychosocial Assessment and Management, and Spiritual and Cultural Assessment and Management.

The panel’s views on the different domains were informative. The highest percentage of items which the panel endorsed as “Included” in primary palliative practice by oncologists were in the realms of End-of-Life Care, Communication and Shared Decision Making, Advance Care Planning—more than 75% of items assessed were deemed to be part of standard practice. The lowest percentage was in Coordination and Continuity of Care, Psychosocial Assessment and Management, and Spiritual and Cultural Assessment and Management—with less than 50% of the items assessed deemed part of standard primary palliative practice by oncologists.

These numbers don’t mean that oncologists aren’t interested in any Coordination of Care though—It means, for example, that while the item “Communicating current prognosis to primary care [provider]” was thought to be included within their regular scope, that “Obtaining family/surrogate feedback regarding clinic practice of coordination and continuity” was thought not to be—again, they looked at nearly 1000 specific actions.

As a palliative care physician, I found the data included on symptom management most interesting. The report showed a figure with 23 symptoms ranked in order of whether items related to them were thought to be “Included” or “Uncertain” to be part of oncologists’ general practice (also remember that there was a third “Not Included” category, to put this data into perspective). Chemotherapy-related toxicity, nausea and vomiting, dyspnea, fatigue—over 90% of the items were thought to be “Included” as part of standard practice. Pain—66% of the items evaluated were deemed part of standard practice, and 33% “Uncertain.” Depression and anxiety—only 27% and 20% of these items were thought to be “Included” as part of primary palliative care activities for oncologists.

So how do we use this data? Again, the report doesn’t show that oncologists aren’t interested in treating depression, or aren’t interested in psychosocial aspects of their patients. But, it does show that there were pieces of the care of depression, and pieces of psychosocial care that might fall outside of what oncologists might be doing in their practices. This tells me that while I, the palliative care specialist, might be able to help control a patient’s nausea or fatigue, this panel notes that the general oncologist might feel that they’ve got those symptoms mostly covered. But instead, as the collaborating consultant, it sounds like extra support with pain, anxiety and depression, and extra psychosocial and spiritual care would be welcome. It also seems that while a physician or APRN might have value being placed in an oncology clinic, we really need to pull in our social workers, psychologists, and chaplain colleagues to care for patients in aspects that oncologists are likely least comfortable performing as part of their standard practice.

Dr. Ross Albert is the chief of the division of palliative medicine at Hartford Hospital, and the medical director for the Hartford HealthCare at Home Hospice teams, in Hartford CT.

Bickel KE, McNiff K, Buss MK, Kamal A, Lupu D, Abernethy AP, Broder MS, Shapiro CL, Acheson AK, Malin J, Evans T, Krzyzanowska MK. “Defining High-Quality Palliative Care in Oncology Practice: An American Society of Clinical Oncology/American Academy of Hospice and Palliative Medicine Guidance Statement.” Journal of Oncology Practice. Published online August 16, 2016.

Image Credit: From the article cited above. 

Wednesday, September 7, 2016 by Christian Sinclair ·

Tuesday, September 6, 2016

PCHETA has a date with a subcommittee! Thank your rep!

by Christian Sinclair

Hey all you hard-working palliatricians and hospice clinicians, we have some pretty exciting news for you! This Thursday Sep 8th, the Palliative Care Hospice Education and Training Act (PCHETA - H.R. 3119/S. 2748) is going on a first date with the House of Representatives Subcommittee on Health (who even has their own hashtag #SubHealth).

So what does this mean? This legislative hearing includes PCHETA and 4 other bipartisan bills focused on improving public health that are being considered for further advancement to the full committee level and eventual consideration in the house. If it goes well, we are one step closer to seeing the goals of PCHETA realized.

What is PCHETA again? We have talked about PCHETA here before, you may have seen it on our social media channels, or heard about it from the many organizations that support it (AAHPM, NHPCO, HPNA, CAPC, SWHPN, American Cancer Society, Alzheimer's Association, American Geriatrics Society, and many others.) But we forgive you if you cannot recall what PCHETA will do.

Basically, PCHETA focuses on increasing Education, Awareness and Research on palliative care and hospice with an interprofesisonal theme (support all the disciplines!). With bipartisan support in both the House and the Senate, and strong voices from patient advocacy groups and groups outside hospice and palliative care, we have a good chance to make a difference*. (You can read the full bill here or get the easy summary from AAHPM.)

So what can you do? First, accept my thanks for doing the strong work everyday. Second, recognize that we can't change the world without advocating for our patients, families, and peers outside of our everyday clinical interactions. So lastly , please consider contacting your legislators. If they are on the House Subcommittee of Health, let them know why this matters. If they have already supported PCHETA as a co-sponsor, then thank them and let them know, that you know this House Subcommittee is coming up! AAHPM has an easy way to contact your legislator, so take 5 minutes and make an impact.

Christian Sinclair, MD, FAAHPM is a palliative care doctor and editor of Pallimed. And is still learning about the long slog it takes to see legislation turn into action.

*Although GovTrack gives the prognosis** of being enacted as 7%. We can do better than that!
** Yes they do call it a prognosis. Not being ironic.

Tuesday, September 6, 2016 by Christian Sinclair ·

Monday, September 5, 2016

Do Hospice Patients Reveal the Secrets to the Universe?

by Lizzy Miles

A couple of years ago I wrote a Pallimed article called, "We Don't Know Death: 7 Assumptions We Make about the Dying."  Since I wrote that article, I have further contemplated the “so what” factor of the assumptions to develop suggested interventions.

This article is the sixth in a series of articles where I take each assumption from the original article and explore the concept in greater depth to include implications and possible interventions. In my last article, I wrote about the assumption that family matters will get resolved.

Here is our next assumption: The secrets to the universe will be revealed.

I admit I went into hospice work with the expectation that I would have profound experiences at the bedside with dying patients. How could one not have this expectation when we see articles about famous last words, such as the NPR article about Steve Jobs saying, “Oh wow” just before he died?

Indeed, I have captured some fascinating thoughts from some of my dying patients. One woman who was devotedly Christian told me, “All faiths go through the same door.” Another time I had a patient say, “Love has no distance.” She said that she knew her family couldn’t be present at the bedside, but she still felt love from them and for them. As it turned out, I used that phrase to comfort the audience in my speech at our hospice memorial. These statements are so simple and yet so profound.

I’ve even taken to asking patients, “What are the secrets to the universe?”  My first indication that I might be off base was a 99 year old woman who had no desire to reflect on her life. Over the course of a year I visited her monthly, but the conversation never got too deep. She didn’t want to look at photo albums, did not want to resolve differences with family, and rarely wanted to process life choices. She would, however, talk about shoes. I did ask her the “secrets” question once, and she gave me the stink eye. She said, “There are no secrets.”

Intervention: Recognize that not every patient wants to reflect, impart wisdom, or do a life review.

There are many books on the market about nearing death awareness, most notably Final Gifts. These books perpetuate the notion that dying patients have special insight into their own prognosis. The stories in the book are often about travel metaphors. Here is transcript of an exchange I had with a hospice patient I’ll call Alice.

Alice: I’m trying to get to the stations. There’s two buses. Either one. They don’t tell me anything.
[What do you want to know?]
Alice: How to get on the bus.
[You can]
Alice: That’s what they tell me. [pause] When I picked up the paper I saw your name on there.
[My name? What did it say?]
Alice: It sounded good.
Alice: The door over there is the door to the building.
[Are you going to go?]
Alice: I will later. That will be the last place I go.
[When do I go?]
Alice: I don’t know, I will have to check. [pause] They say go up and wait and someone will get you.
[What’s on the other side of the door?]
Alice: Another door.
[Who helps you through the door?]
Alice: Nobody. If you know the door is there, you go through by yourself.
[Can I visit again?]
Alice: [smiles] If I’m still here in two weeks.

After my visit, I went back to the hospice team and told them that Alice was seeing the door and she would not be around much longer. As it turned out, Alice did live past those two weeks. In fact, she lived another two years. I got so caught up in the mysticism of the moment that I forgot that she had dementia and she very well could have been talking about the bathroom door.

And yet… two years later I had quit social work and was volunteering for a while, and I was asked to sit with her while she was dying. I was with her the moment she died. Coincidence?  I’m not sure. I’m with Mulder, I want to believe.

Intervention: Reflect on how your own belief system plays into your practice.

In my last article, I mentioned Ira Byock’s book, The Four Things that Matter Most.  The content of that book is relevant to this assumption as well, because readers may believe that there are meaningful final thoughts that are conveyed at the bedside. Sadly, I have seen family members who are hoping that the patient will say something, or they themselves will have a transpersonal experience. Sometimes none of this happens and the patient just dies.

Katie Roiphe’s New York Times article, “Dying with Nothing to Say” reiterates this point.

As a society, we share stories about final words and transpersonal experiences, because it seems to soften the blow of the reality of death. But when you have family who hopes for something to happen which doesn’t, it can be heartbreaking.

Intervention: Educate loved ones that meaning-making often comes from within and over time. Encourage activities that aid in processing thoughts such as journaling or art therapy.

As for me, I know to temper my expectations, but I’m still going to ask for the secrets to the universe. Last week I asked a patient who was over 100, and she said, “Everybody has their own way of handling things so my advice might not fit for others.” Her tablemate had heard my question but not her response and asked her, “What IS the secret?” She clasped her hands to her chest and said emphatically, “Love, love love.”

But that’s not really a secret is it?

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and 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

Monday, September 5, 2016 by Lizzy Miles ·

Sunday, September 4, 2016

August 2016 Pallimed Recap

by Christian Sinclair

August 2016 has left the building along with a lot of heat, rain and wildfires.

Here is a recap of all of our posts from August 2016. We know there are some you may have already bookmarked, but forgot to read, or maybe you liked it so much you want to share it again.

Make sure to follow, engage, like and comment with us on Facebook, Twitter, Google+, Pinterest, Tumblr, Instagram and LinkedIN.  We always appreciate it when you recommend us to your peers and social media makes it very easy!

Humanities/Media Reviews
The Profession
Comment Shout-out's for July (in no particular order):
Clay Anderson, Drew Rosielle, Lyle Fettig, Anthony Back, Lizzy Miles, Gerg Gifford, Kyle Edmonds, Kathy Kastner, Karl Steinberg, Lynne Kallenbach, Emilie Clark, Robin Kleronomos, Anthony Herbert, Tom Quinn, Karen Kaplan, Lisa LaMagna, Sidnee Weiss-Domis, Daniel Miller, Robin Youlten, Rebecca Gagne Henderson, Linda Dolan, Andy Probolus, Amy Getter, Alex Smith, Gerald Tevrow, Elizabeth Lindenberger, Vikranta Sharma, Elaine Glass, Matt Rhodes, Vickie Leff, Paul Rousseau, Emily Riegel, Will Grinstead, Jeanne Phillips, Staci Mandrola, Julie Koch, Michael Pottash, Thomas Reid, Pippa Hawley, Kat Collett, Michael Fratkin, Julie Christenson and a few anonymous people.

Highlighted Comment for August 2016
Frustrations with words not living up to their promise continue to be a theme this month. Thomas LeBlanc had a great comment on the challenges with the term palliative chemotherapy.
Let’s not throw the baby out with the bathwater; the best way to palliate cancer-related symptoms is to actually treat the cancer (if it’s treatable, and if the patient is not too frail to tolerate the treatment). The enemy here isn’t the chemotherapy, it’s the inappropriate use of it in patients who are too ill, or who have resistant disease, or whose goals can’t be met by the treatment. The enemy isn’t the chemotherapy, it’s the notion that patients should be forced to choose either cancer treatment or good palliative care. Instead, I believe they should be able to get both, and we should all work together as a team, oncologist and palliative care clinicians alike, to do what’s best for each patient at each step along the way.

Social Media Highlights

Passionate Volunteers and Writers Wanted
Do you love hospice and palliative medicine? Got something to say or find interesting things to share? Want to reach nearly 40,000 people with your ideas? We do this with a volunteer staff of ten, but we could use more regular volunteers.

If you are interested in writing for or working with us at Pallimed please check out the Pallimed Opportunities page and complete the form at the bottom. If you want to help we have something you could do! Like write this simple monthly review post (this would be really easy to hand off)! Or join our team of social media ambassadors to help run one of our social media accounts (especially with Facebook, Pinterest, LinkedIn, Instagram and Tumblr) - we do on the job training!

Christian Sinclair, MD, FAAHPM is a palliative care doctor at the University of Kansas Medical Center and editor of Pallimed. When not advocating for health care professionals to use social media you can find him playing board games.

Image Credit: Lionello DelPiccolo via Unsplash CC0 1.0

Sunday, September 4, 2016 by Christian Sinclair ·

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