Hospice and Palliative Medicine

Notes from the Field

by Jordan Endicott, JD
Manager, Health Policy & Advocacy

I’ve worked in the health care related field for nearly the entirety of my professional career, but surprisingly, the last time I had stepped foot in a hospital was at age 10 when I broke my wrist. When I was offered the opportunity to visit Drs. Christian Sinclair and Paul Tatum at their respective hospitals, I was excited for the chance to reacquaint myself with a system that I was really only familiar with in an abstract way.

We spent the first day of our trip with Dr. Sinclair at the University of Kansas Medical Center, spending time with the interdisciplinary team there, and then seeing patients with Dr. Sinclair and a nurse from his team. The patients we saw ranged from those nearing the end of life, to cancer survivors who were left with pain and complications following treatment. The one constant though from all of the visits was that Dr. Sinclair and the nurse kept the focus on what the patient wanted and desired.

After a day spent in Kansas City, we made the short trip over to Columbia, Missouri where Dr. Tatum works at the University of Missouri. Dr. Tatum took us on a whirlwind tour that involved seeing a patient in the hospital, shadowing him during his primary care clinic hours, and ending the work day in Jefferson City to meet with Jane Moore, the CEO of the Missouri Hospice and Palliative Care Association.

When I first informed my friends and family earlier this year that I was accepting a job with the American Academy of Hospice and Palliative Medicine, the most common reaction was along the lines of “wow, that sounds terribly depressing” or “why would you want to do that to yourself?” The reaction was much the same when I told everyone that I’d actually be visiting two of our members and seeing their patients.

My usual response to the negative thoughts that people have to the field of end-of-life care is that our members are working every single day to enhance aspects of patient care that are in need of vast improvement. After seeing firsthand the relief and care that our members provide though, the biggest take away for me is that hospice and palliative care is absolutely not depressing – it’s the fact that thousands of patients across the country still lack awareness or access to this care that is a cause for sorrow. I was already proud of the work I do in supporting our members, but after my visit, I’m even more grateful for the opportunity to work for the Academy and advocate for the field of hospice and palliative medicine.

A Day in the Life…

by Jen Bose, Marketing & Membership Manager

Working with AAHPM for several years has allowed me to get to know some of our members fairly well. I look forward to the Annual Assembly and summer courses each year because I get to connect with members in real life. When the opportunity for Jordan Endicott, Manager of Health Policy and Advocacy, and I to visit Drs. Christian Sinclair and Paul Tatum came up I jumped at the opportunity. Not only would I get to see what they do on a “typical” day I would also be able to understand how the Academy impacts everyone working on the interdisciplinary team and the patients and their families.

Thursday September 24
Kansas University Hospital – Kansas City, KS

We started the morning watching offsite lectures with fellows with Dr. Sinclair. After the lectures we met the three palliative care teams as they discussed the patients for the day. Then we were off to see patients with Dr. Sinclair and the nurse on his team. Each patient had a unique situation and required a slightly different approach and discussion. Some of the discussions were led by Dr. Sinclair and some were managed by the nurse. Every conversation focused around the patient. For some it was about how he or she was feeling that day and what could be done to make him or her more comfortable. For others it was finding out what their expectations were in their recovery and what their quality of life goals were. All of the conversations were warm and personable with a focus on making sure everyone was on the same page. We ended the day at the National World War I Museum before eating delicious barbeque.

Friday September 25
University of Missouri – Columbia, MO

The day started with a team meeting and shadowing a patient visit at the University. We then made our way over to the office where Dr. Tatum sees his geriatric patients. All of the patients adore Dr. Tatum and based on the appointments it is easy to see why. He knows them all very well and has very supportive conversations with them about their present situation and what they hope for in the future and suggestions on how they can get there. We were able to meet the nurse that Dr. Tatum works with in the office that serves as his right hand woman. Then we were off to Jefferson City to meet with the CEO of a state level hospice and palliative care organization. She explained some of the issues that she has been facing in the state and the amazing educational offerings that her organization has created. Our night ended at the Roots N Blues N BBQ Festival where we met up with Dr. Gregg VandeKieft to enjoy music and great food.

Final Thoughts

I was confident that I knew what our members did but in an abstract way. I have seen the process firsthand when my Grandma started a palliative care treatment plan and eventually hospice. Shadowing Dr. Sinclair and his team at the hospital and Dr. Tatum at the hospital and clinic was truly eye opening. The warmth and compassion that was present in every conversation was astonishing. I often found myself on the verge of tears and so proud to work with the amazing people working in hospice and palliative medicine every day.

Back to the Old Schoolhouse − Students of Different Professions Learn Palliative Care Together

By Joseph D. Rotella

More and more academic centers are developing interprofessional education (IPE) programs to teach palliative care− and it makes good sense. Seriously ill patients and their families suffer as whole human beings and it takes a village of palliative care providers from different disciplines working together to comfort, support, and heal them. If we train palliative care professionals in silos, how can we expect them to be prepared for effective interdisciplinary teamwork when they emerge?

The feature story in the American Academy of Hospice and Palliative Medicine (AAHPM) Fall Quarterly (2015), Interprofessional Education: The More, the Healthier, highlights some of the programs across the country that are doing groundbreaking work in IPE.

It may be easy to see the promise of interprofessional training in palliative care, but it’s hard to do it well. In an AAHPM blog post accompanying the article, Dr. V.J. Periyakoil describes her personal experience as faculty for the VA Interprofessional Fellowship Program, “A gold standard is when all IPE fellows are taught at a level that is challenging to all of them in every single session.” That sets a high bar and she adds, “This area is really ripe for discovery and new innovation.” Like the pioneer teacher with K through 12 students in one classroom, IPE instructors strive for a curriculum that can engage learners with a wide range of individual competencies. When it works well, the students learn as much from each other as they do from their teachers.

When I think back on my own development as an internist and palliative care physician, I am struck by how much I learned informally from my colleagues in other professions. When I was a green intern on my first Cardiac Care Unit (CCU) rotation, it was an experienced (and extremely patient) CCU nurse who showed me how to run a code. Counselors taught me how to deal with challenging families and support the grieving. From chaplains, I learned to understand people in the context of the meaning of their life stories. Social workers modeled how to empower patients and families and to have healthy boundaries. A pharmacist shared best practices on stopping unnecessary medications. A nurse’s aide showed me how a bed bath can be a sacred ritual. I had some great physician mentors, but I think I learned more about palliative care from the interdisciplinary team than from other doctors.

My first experience with formal IPE was about a decade ago when I was a facilitator for a discussion group of medical, nursing, social work and pastoral care students following a screening of the film Wit. One medical student resented the whole process. He said, “This is absurd; no real doctor would behave as badly as the ones in this film.” The other medical students nodded their agreement. A nursing student rolled her eyes and said, barely audibly, “Actually, that is exactly what they do.” Her peers agreed. This was a fantastic teachable moment. IPE is not just about developing knowledge and skills. It’s also about opening minds and removing cultural barriers to teamwork.

Dr. Joe Rotella, MD MBA HMDC FAAHPM is the Chief Medical Officer, AAHPM and a frequent participant in #hpm (hospice and palliative med/care) chat.

What: #hpm chat on Twitter
When: Wed 10/14/2015 – 9p ET/ 6p PT
Host: AAHPM and Steve Smith, CEO of AAHPM

Some questions to ponder for the chat:
1. Are there opportunities for interprofessional palliative care training in your program? If so, how do they work?
2. What do you find to be the biggest challenges to interprofessional learning and collaboration?
3. What is the greatest lesson you ever learned from someone outside your profession?

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 tweetchat.com, for ease of following.

You can access the transcripts and analytics of #hpm chats through @Symplur.

A Fellowship Does Matter

I entered my Palliative Care and Hospice Fellowship in July of 2014, having previously weighed the benefits and burdens of grandfathering in vs. fellowship training. Encouraged by colleagues and my employer I hoped to pursue an experience that would be richer than on the job training and book learning. I did my research before applying to programs. I asked a lot of hard questions to my potential programs. My program director questioned me about what I would want to accomplish since I was already a Hospice Medical Director and had years of physician experience. I laid out my goals and eagerly anticipated the start of my year of learning. Now I am confident that the value of my experience needs to be shared so that other contemplating such a move can be reassured.

I knew it was not going to be easy to move my established life. I resigned from my clinical and administrative positions. I said goodbye to many wonderful coworkers, and patients. I packed my bags and returned to life as a student. My medical career has always been about caring for populations at risk. I embraced the growth that comes from ongoing transitions in my medical career.

I quickly was amazed by the talent of my co-fellows and attendings. As palliative care and hospice providers, we learn amazing skills and invaluable tools for patients in need of care and compassion. Now I realize that I am past the eleven months mark and the time has flown. The experience of my fellowship year has far exceeded my expectations.

I now know how to manage patients and families who appear at the doorsteps of a busy inpatient unit in the worst of situations. I understand the dynamics of highly trained interdisciplinary teams when providing for the physical and emotional needs of patients with advanced suffering. I have learned to palliate the terrible suffering in bodies that cease to sustain themselves. I can feel the deep gratitude as families leave us through the same entrance that greeted them only hours or days earlier.

I have worked in multiple palliative care settings, from solo physicians to full interdisciplinary teams. I have gathered the wisdom of the physicians and other team members to maximize communication across the many levels of human despair. I have gained wisdom from hearing and contrasting multiple attendings’ approaches on symptom management. I know about triaging scarce team resources, the dance of consultant etiquette, and the need to enhance the primary physician’s relationship with the patient.

We care for more than just the patients and their families. We serve and care for the entire range of hospital staff: from medical students to attendings, from CNAs to directors of nursing. We support and coach the new social workers trying to grasp the nuances of hospice placement. We continue to define our role and our skills within hospital systems that barely have time to breathe and reflect. We respect and serve our patients and their families. We advance the science of palliative medicine as we gather data that shows our value to administrators eager to improve quality, satisfaction, and cost savings. All in all, we do great work.

I have grown personally and professionally in ways I never imagined. The need to be in a fellowship is reinforced every day. The year of intense experience is balanced by the beautiful and unwavering support of the attending faculty. The confusion of new places and new rotations is organized and simplified by amazing support staff. When we feel lost, we are given a path and encouragement. When we stress, we are given support and relief. When we look to the future, we are prepared for change and reminded that our mentors are always there for us.

This experience has transformed my initial goals, allowing me to envision the future of palliative care. I see myself able to work in all of the settings of hospice and palliative care. In our developing specialty I see myself returning not only to clinical work but also to a position of leadership and advocacy. I see a great opportunity for supporting teams during the explosion of need for palliative care across the continuum of health care. I hear the warnings about burnout in hospice teams and palliative care teams that need to stay strong now more than ever. I see the need for networking and support among our professions at all levels.

My program is supporting me in my quest to learn about business strategies for hospice and palliative programs. I am actively connecting with our national and international organizations. This amazing fellowship has given me and my co-fellows an environment, a model, and a vision of how to care for patients, families, coworkers, healthcare teams, and ourselves. I am excited because I now see vast opportunities in my life. I look forward to working with hospital systems and healthcare systems as our profession carries forward the recommendations from the Institute of Medicine’s recent report on Dying in America. It is clear to me that this transformation and world of opportunities would have been missed if I simply grandfathered in to board certification. I will forever be thankful that I chose this fellowship experience.

Whit Dunkle, MD, ABFP
Medstar Washington Hospital Center/Capital Caring Fellowship

Are You a Leader or a Jerk?

My Chief Medical Officer, Dr. Chris Hughes, and I have been discussing leadership and communication, as we promote the development of effective behavior in ourselves and in our staff. During a recent chat about one tome on the subject, “What Got You Here Won’t Get You There” by Dr. Marshall Goldsmith, Dr. Hughes succinctly summarized the book in four words: “Don’t be a jerk”.

This light-hearted comment holds great wisdom, and insight into the common pitfalls of leadership.
We all start out with similar traits on the leadership trajectory. Young leaders are typically really smart, personable, ambitious and happy to go above and beyond to do whatever it takes for the organization. Their amiability activates others. They get promoted.

With the power of position and the increasing pressures of leadership, many of these superstars go off the rails because of their way of relating to others; particularly in handling conflict, listening respectfully, problem-solving and maintaining their composure. In other words, they act like jerks. Stress can cause an otherwise perfectly lovely person to act like a jerk, and it is incompatible with effective leadership. Of course, the higher we rise in the workplace hierarchy, the less likely we are to receive honest feedback about how we treat others!
We are now in a highly scrutinized and regulated industry that requires our best efforts to both honor our mission and thrive in this environment

Under these highly intense and game-changing conditions, the jerk can emerge:

  • Use of power or status to win arguments and drive change
  • Insensitive or aloof persona
  • Poor frustration tolerance
  • Low insight into the impact of their style and behavior on others
  • Reliance on obsolete strengths; failure to adapt to changing conditions
  • Trail of hurt feelings among those in their wake

It is essential that leaders at all levels recognize the need for and develop leadership skills that will help us navigate the white water of healthcare reform and hospice’s transition into a mainstay of the healthcare continuum. The ability to engage and motivate employees during difficult conditions is a core competency. Vision and experience remain necessary, but are no longer sufficient.

Barbara Ivanko, CHPCA
President & CEO
Family Hospice and Palliative Care
Pittsburgh, PA

Find out how to develop and strengthen the key relationship between physician and executive leaders at this new one-day program on August 17 in Chicago. Learn the best strategies and most innovative tools to take your hospice leadership team to the next level at the Intensive for CEOs and CMOs: Building an Exceptional Physician/Executive Leadership Team. Learn more at www.aahpm.org/SummerInstitute.

ICD-10 Program Focusing on Hospice and Palliative Care

Dear Education Colleagues,

Are you familiar with all the ICD-10 changes coming your way? Are you certain exactly where to find morphology codes? What has the 8-week rule regarding initial and subsequent MIs changed to? How does laterality effect your coding? How will you correctly code for symptom treatment? What about the management of terminal illnesses with related conditions? Discussions will include the significant advancements between ICD-9 and 10, the newly created complex guidelines encompassing codes, rules including Laterality, Encounters, Activity, and Place of Occurrence. The newly created ICD-10 structure accommodates both technological and medical advances and, allows for more flexibility with the highest level of specificity and clinical detail. New features include the relocation of the Neoplasm Table and why the Hypertension Table is no longer necessary.

We will answer your questions, address your concerns, and teach you the myriad of changes with respect to new laws and requirements in Hospice and Palliative Care at the ICD-10 Boot Camp for Hospice and Palliative Care.

October 1st is fast approaching, let us lead you to Your Success for ICD-10!

Jean Acevedo, LHRM CPC CHC CENTC
Acevedo Consulting Incorporated

Organizational Advocacy Key to Promoting Advance Care Planning… Now it’s Time for Individuals to Make Their Voices Heard!

By Gregg VandeKieft, MD MA FAAFP FAAHPM
Co-chair, AAHPM Public Policy Committee

The following is part of a three-post progressive blog about advance care planning, prompted by the Centers for Medicare & Medicaid (CMS) decision not to pay for the new “complex” advance care planning codes in this year’s Medicare Physician Fee Schedule. Now is the time to tell CMS why you support reimbursement for these important services! The agency is accepting public comments through Dec. 30 —it’s easy to submit comments online!

Please also see AAHPM Public Policy Committee co-chair Phil Rodgers’ Pallimed post for detailed background on efforts to advance the new codes via the AMA RUC and with CMS, and read AAHPM State Policy Issues Working Group Chair Paul Tatum’s GeriPal post where he makes the case that it’s time for advance care planning to become routine for patients with serious illness.

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A common complaint in emergency departments and ICUs goes something like: “Why didn’t anyone ever talk with this patient about how serious their illness is? Is this really what they would have wanted?” Primary care providers and subspecialists who commonly deal with serious illness cite time constraints or fear that frank discussion of prognosis will “take away hope” as barriers. The unfortunate result is that things take a turn for the worse before the patient and their family have seriously considered or prepared for that possibility, and physicians with whom they have no prior relationship end up having “the talk” in the ED or after admission to the hospital.

Efforts to promote effective advance care planning (ACP) range from coordinated community-focused efforts, like the Gunderson Clinic’s Respecting Choices program to grassroots efforts like The Conversation Project. But what have medical specialty societies done to promote ACP? I’m proud to say that our Academy has been a leader on this front, particularly in terms of public policy advocacy.

For years, AAHPM has worked to advance federal legislation that would promote ACP. After his proposal to reimburse physicians for time spent in conversation about goals of care was cut from the draft health care reform bill amid cries of “death panels,” U.S. Rep. Earl Blumenauer (D-OR-3) invited key stakeholders – including AAHPM − to the table to develop comprehensive legislation on the matter. The result is the Personalize Your Care Act.

This legislation would provide coverage under Medicare and Medicaid for voluntary advance care planning consultations, make grants available for communities to develop programs to support “physician orders for life-sustaining treatment” to promote patient autonomy across the care continuum, require advance care planning standards for electronic health records, and allow portability of advance directives across states. The bill, which is cosponsored by U.S. Rep. Phil Roe, MD (R-TN-1), had bipartisan support in the House this past Congress, but it will need to be reintroduced next year. (Congressmen Blumenauer and Roe have met with Academy leaders for small-group dialogues during our annual Capitol Hill Days.)

At the same time, AAHPM has engaged in regulatory advocacy on the matter. The Academy joined with other medical society stakeholders to advocate for new CPT codes (included as 99497 & 99498 for 2015) for more complex advance care planning. AAHPM surveyed its members to contribute to findings presented to the AMA/Specialty Society Relative Value Scale Update Committee (RUC) which then developed and relayed relative value recommendations for the codes to CMS. (AAHPM was invited to survey under the American Geriatrics Society (AGS), which has a permanent seat on the RUC.) The Academy’s RUC advisor, Phil Rodgers, MD FAAHPM, has worked with representatives from AGS and other medical societies to strategize about how best to influence CMS staff and officials, and he participated in a meeting with CMS staff that stakeholder societies requested to explain why ACP is good medicine and urge CMS to reimburse these important services.

It’s been great to see other organizations also work to promote ACP. The American Medical Association’s (AMA) Code of Medical Ethics includes a section devoted to advance care planning, adapted from a more comprehensive report on ACP by the AMA’s Council on Ethical and Judicial Affairs. The American Society of Clinical Oncology (ASCO) has published a booklet on ACP, accessible in English and Spanish along with other materials, from a page dedicated to ACP on ASCO’s Cancer.Net web site. The American Geriatrics Society provides links to Prepare for Your Care, an on-line ACP tool for patients and families with excellent educational videos. A Spanish language version was recently added.

The American Academy of Family Physicians (AAFP) passed a resolution at its 2014 Congress of Delegates promoting the implementation of centralized registries for advance directives, durable power of attorney for health care, physician orders for scope of treatment (POLST), and do not resuscitate orders. The AAFP also has a position statement on “Ethics and Advance Planning for End-of-Life Care” that strongly encourages ACP and the completion of advance directives “as a part of routine outpatient health maintenance.”

But, if all these societies’ extensive efforts have yet to bring about the desired level of change, are further initiatives likely to be productive? Data from the “Respecting Choices” project confirm that communities can be positively affected by well-designed collaborative programs. Moreover, those of us practicing as palliative care specialists have an opportunity and responsibility to promote generalist palliative care skills among our colleagues.

Of course, with comments now being accepted on the 2015 Medicare Physician Fee Schedule Interim Final Rule – where CMS indicated it would not pay for the new CPT codes for advance care planning at this time (CMS states other codes can already be used for reporting and payment) – we, as individuals, have a unique and very valuable opportunity to weigh in with policymakers to explain why ACP is a vital medical service and how Medicare reimbursement not only serves to promote these important services for beneficiaries but, without separate codes, we are unable to track them to look at utilization, outcomes, and which specialties are performing ACP services and where.

I urge all my Academy colleagues – and everyone who cares about sound health policy – to take just a few minutes to submit comments to CMS by Dec. 30.

Phil Rodgers, who co-chairs the Academy’s Public Policy Committee with me, provides these tips for doing so:

  • Explain why you think it’s important to pay for ACP services through a specific mechanism. CMS has suggested that it believes Medicare already pays for ACP services through the Evaluation and Management (E/M) and extended service codes. Tell them about the unique value of advance care planning, and how it is ‘separately and identifiably’ necessary in addition to all other services (medical therapy, symptom management, etc.).
  • Be specific, be yourself, and write about what you know. It’s OK to reference the literature about ACP services and palliative care, the IOM report, the importance of tracking the frequency ACP is performed, the needs of an older and sicker society etc., but it’s more powerful to speak from personal experience. Tell patient stories that illuminate a connection between high quality advance care planning and better care for your patients. Every HPM professional I know has dozens if not hundreds such stories. Now is the time to tell them.

Integrating with Palliative Care- Opportunities and Challenges

Recently, I attended the yearly National Seminar given by the Center to Advance Palliative Care. I was honored to be a member of the faculty and on the planning committee. The attendance was over 900- up over 50% from a year ago- a tribute both to the growth of palliative care as a discipline and the respect with which CAPC is held in the palliative care space. This is the place palliative care nurses, doctors and administrators come to find out about best practice in the field from medical issues, to business models, to integration of palliative care into virtually every possible setting on the health care continuum. As Dr. Diane Meier, head of CAPC pointed out in her opening talk, palliative care has now gone from being an innovative practice to standard practice- at least in hospitals. It will soon be unusual for a hospital not to offer palliative care.

Maybe most importantly, palliative care is about caring for the whole person in all dimensions- including the spiritual. Every palliative model includes the mandate to attend to spiritual suffering. The Joint Commission’s advanced certification process in palliative care mandates a chaplain on the palliative team and will likely soon mandate that the chaplain have suitable training. Everywhere I went at this seminar, I heard spiritual care mentioned and included. This was a rare event in health care where no one looked quizzically when you said you were a chaplain, as if to ask “why are you here?”

Given this environment and context, the lack of chaplains was glaring. One of the Tweets from this event, posted by a physician, said simply “Where are the chaplains?” The attendance roles put the number of chaplains at 1% of the total attendance (i.e. about 10). Now, to be fair, the number of social workers wasn’t much greater, but this is still a problem. We as chaplains have rightly complained for years that we are not included- to the detriment of patient care. Now we have a setting that represents maybe the fastest growing discipline in health care and loves to have us, and we are not showing up. On top of that, this event is a phenomenal place for chaplains to learn about how we might add more value to the palliative care enterprise. So this is not just about giving. It is about getting at least as much as we give.

The barriers are mostly pretty obvious. This seminar is not cheap and going likely means not going to something else like the meeting of the chaplaincy body that certifies us. Many chaplains who cover palliative care do not do it full time so there are other responsibilities. Chaplaincy staffing is generally so tight that being aware for 3-4 days puts a burden on our colleagues and on the institution. We all know all of these barriers.

But there are opportunities. Several of the chaplains I did meet at CAPC came at the behest of and at the expense of their institutions who now highly value palliative care and understand how central spiritual care is to that endeavor. My guess is that more chaplains could make the case to their administrations that they should be funded for CAPC. My guess is that many administrations (and many palliative care chaplains) don’t appreciate the opportunities the CAPC National Seminar provides to further integrate spiritual care into palliative care. However, more and more hospitals are seeking Joint Commission accreditation in palliative care and are then trying to figure out how to get chaplaincy included in a way that will pass this process.

So I don’t have any magic answers. My only plea to chaplains involved in palliative care is when the CAPC notice comes around next year; don’t just reflexively press the “delete” button. And, by the way, I could have written this exact post with reference to the convention of the American Academy of Hospice & Palliative Medicine that will be in Philadelphia in February. Hope to see lots of my chaplain colleagues there.

The Rev. George Handzo, BCC, CSSBB
President
Handzo Consulting, LLC

Suffering is in the Eyes of the Beholder

A recent morning brought the news that 29 year-old Brittany Maynard had ended her life rather than continue what she perceived to be intolerable suffering from an incurable brain tumor. About an hour later I watched a sports report on college freshman, Lauren Hall who the previous day fulfilled her dream of playing in a college basketball game on the team she had been recruited for despite the fact that her doctors said she had only weeks to live as the result of an incurable brain tumor.

Although my only knowledge of these two women is what I see in the media, I was first struck by the similarities between them. Both young, white women with incurable brain tumors who seem to have good social supports, no psychological issues and would seem to have had the opportunity to have access to some of the best health care the world has to offer. Both seem to be in full control of their own lives despite their tragic diseases. Despite all of those major similarities, they seem to have opted to take starkly different roads to their own death. To be clear, I am not implying anything about the goodness, badness, rightness or wrongness of either road. Quite the contrary. My point is the difficulty of determining the right and wrong for any given person despite so many similarities or of making judgments in that regard. One of the lessons I continued to relearn as a chaplain with people with terminal cancer is how ways of approaching the end of one’s life that seemed “wrong” to me gave great meaning and comfort to some patients who chose them.

So what is going on here? My suspicion is that a key issue is how each of us defines and understands “suffering” in our own lives and the lives of others. The reports on Brittany Maynard focused on suffering from physical symptoms. Yet, Lauren Hill suffers from many physical issues. In Brittany’s case, that suffering was at least portrayed by the media as dominating her life and her decision making. In Lauren’s case, that suffering was seemingly put aside and diminished in significance in the service of another goal. Why the difference? Social or psychological factors don’t seem to account for it.

Dame Cicely Saunders taught us many years ago that pain (and suffering) exists in four domains. The one unaccounted for here is the spiritual or existential domain. This domain includes the part of our lives in which meaning making resides. So the degree of any one person’s perceived suffering may not be at all correlated with the intensity of pain in the physical, social or psychological dimensions. That correlation may depend on the meaning of the pain or distress. I have seen many patients for whom physical pain actually reduces their suffering because they believe that any physical pain negates some amount of sin thy have committed and thus brings them closer to being granted eternal life in heaven. Other patients take great comfort from the belief that their illness is caused by their God because it proves that this God is still in control and it is the idea of that control that gives them comfort in their lives. Neither of these beliefs matches my belief system but they clearly reduce suffering for many.
I would submit that the spiritual/existential dimension has more power over how we make decisions about how our lives will come to conclusion (when we are allowed that decision) than is commonly appreciated. Further, as little as we understand the physical, social, and psychological dimensions of suffering, we understand the existential/spiritual dimension far less.

I have no idea why Brittany Maynard and Lauren Hill have apparently taken such different paths and I don’t think I or maybe anyone can ever truly know because only they can appreciate what constitutes “suffering” in their lives and where they each find meaning and comfort. For others to make judgments about the degree of their suffering and how it could be/should be coped with is dangerous territory indeed because we know so little about it and virtually never include it in the calculus of how health care is delivered.

The point here is not to come to this understanding in order to be able to guide all people facing deaths terminal illness to some “best” outcome. The point is to be able to better understand the existential/spiritual dimension and incorporate it in care in order to help patients to the decisions that seem best to them and to make the living out of those decisions possible. Maybe we can come to the day when patients will make informed decisions about what best reduces their suffering and live those decisions out so routinely that it will not be a matter that warrants national news coverage.

The Rev. George Handzo, BCC, CSSBB
President
Handzo Consulting, LLC

Ebola and Hospice and Palliative Medicine

With all the news about Ebola, I suspect many of us are thinking about what our role might be in an outbreak. Certainly patients dying of this distressing disease can use excellent symptom management, but are there things we can learn from all this?

Here are my initial thoughts, but I would love to hear what others are thinking!

Lessons from Ebola in 2014

  1. Fear can make people crazy.
    1. Screening at airports and travel restrictions are unlikely to really protect us.
    2. A whole school in California closed because a student had been on board the plane with the second nurse infected in Dallas.
    3. Remember the Memorial Hospital calamity in New Orleans after Hurricane Katrina?
  2. Lethal infectious diseases can suddenly become a threat.
    1. SARS and avian flu could have been much scarier.
    2. Tens of thousands die from influenza in the US every year.
  3. Patients infected with Ebola, patients with advanced incurable disease, and all patients, deserve good care.
    1. In times of crisis, life-prolonging care has been denied to anyone with a DNR.
    2. It can be important to continually remind our colleagues and community that “our patients count too”!
  4. With preparations, supplies, and training it is possible to care for patients with scary diseases without harming healthcare workers or their families.
    1. The preparations and training now taking place in US hospitals may or may not be necessary for Ebola but may be essential for the next scary disease.
    2. More work developing telemedicine consultations could help alleviate our workforce shortage, help with continuity of care, and allow care without exposure to disease.
  5. Preparation and collaboration with other institutions can make a huge difference in a crisis.
    1. Several patients were cared for at Emory without upset but in Dallas, they weren’t prepared.
    2. After a series of hurricanes in Florida when gasoline supplies ran out, the hospices that could reach their patients had arrangements with farm co-ops for gasoline.
    3. Deliveries could stop. Hospitals could stockpile the medications and equipment a hospice or palliative care service would need to continue caring for critically ill patients at home.
  6. What really does matter, anyway?
    1. Ultimate “safety” in the face of our inevitable mortality may be an elusive goal.
    2. The good of the community might be one guiding principle
    1. It’s reasonable for scarce life-saving resources to be allocated to those most likely to survive.
    2. Even in times of crisis, our vulnerable patients still need our care.
    3. We might have a crucial role in caring for patients triaged to forgo life-extending care – if we are prepared.
    1. A crisis can bring out the worst in some but the best in others.
    1. There are lots of “quiet heroes” doing the right thing, even at risk to themselves and possibly their families.
    2. We can be a model being kind and generous, even in the scariest of times.

    As one of our brave colleagues who is readying herself to depart for a volunteer medical work in Liberia put it:

    We must encourage AAHPM members to be sure they are already incorporated into their own agency’s/facilities/organization’s disaster response team. Palliative care needs to be amongst the first groups to be activated.

    Palliative care in these humanitarian crises is crucial. While most responders will rightly be focused on the critical care, palliation for those with a month or less to live (potentially) is even more crucial.

    How do we bring our ‘touch’ to these, when we cannot touch?

    How can we see eyeball to eyeball, heart to heart through a hazmat suit?

    How do we help create legacy and foster healing for those loved ones who are on the other side of the quarantine wall?

    Fostering healing in a hurting world . . . “The first duty of love is to listen.” (Paul Tillich)

    Porter Storey MD FACP FAAHPM
    Executive VP, AAHPM
    Colorado Permanente Medical Group
    Boulder, CO