Archive for October, 2014

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

Spirituality + Religion? Spirituality vs. Religion? Spirituality includes Religion?

Discussion around spirituality and religion are more evident and public in our academic circles and in our society in general. A good thing I believe. A stroll through my Twitter feeds this morning yielded an article about a legal challenge in New York State to the tax exempt status of a pagan group presumably in part over whether they are really a religion and yet another article on this much examined group in our society called “spiritual but not religious” which utterly confused and conflated “spiritual but not religious” with “unaffiliated”. In research circles, there is ongoing debate about how we define what these concepts are that we are going to research. In the US military, there is much heated debate about whether service members should be allowed to list “humanist” as their religious affiliation.

Ken Pargament and his colleagues published an article on sorting out the definitions of “spirituality” and “religion” which was subtitled “Unfuzzying the Fuzzy”. A worthy goal for sure but one that, in this case, is not going to be easily achieved as testified to by the fact that the article was written 17 years ago and the debate seems to go on unabated. As a health care chaplain who has been privileged to discuss these issues with people trying to find the role of spirituality/religion in their lives in the midst of severe crises, I believe we have to be more transparent about the idea that this discussion has some very powerful underlying issues.

These concepts touch a part of many of us that is likely at the core of who we are as human beings. It is a core that is certainly described in many of the definitions but its power is often underappreciated. Even those of us actively engaged in the debate or the research or the discussion often underappreciate the power of these concepts in our own lives. Thus this is a discussion that very few if any of us can be dispassionate about. That is OK as long as we are honest with ourselves and others about it. Good science doesn’t require that the scientist be without bias or passion. It only requires that the bias be acknowledged.

A corollary of this centrality is that this debate is often played out as a zero sum game. That is, if your definition of spirituality “wins”, mine “loses” and, in this case, that “loss” feels like it invalidates a core part of who I am. In chaplaincy, we have long tried to teach students that accepting the beliefs of others does not invalidate your own beliefs.

Yes, there is some fuzziness that we can deal with by good research. For instance, good research on who the “unaffiliated” say they are has already discovered that, while they do not belong to an organized religious group, they often do believe in God and even define themselves with a denominational label. So this is a commentary on the perceived relevance of organized religion in our culture but not on a basic shift in how people see themselves.

I am also called back to the work of Thomas Kuhn in The Structure of Scientific Revolutions on how paradigm shifts occur. Particularly, Kuhn points out that during such a shift, there is a time in where the old paradigm is acknowledged to be flawed but no new paradigm is apparent. That neither/nor is going to cause discomfort that is going to drive a search for a new paradigm. We may or may not be in what could really be called a paradigm shift with regard to our beliefs and attitudes about spirituality and religion. However, it might be helpful to think of it that way to help us normalize these tensions.

As I approach these discussions, it is helpful for me to keep a couple things in mind. First, this discussion is not just a nice intellectual exercise. It involves some concepts that I may feel challenge some very basic parts of who I am and how my view of the world is structured. That is scary and can make me defensive if I am not conscious of the issue. Second however, this discussion can and should produce a “win-win” rather than an “I win- you lose”. Therefore, I should remember to not allow others to make me feel that I am “wrong” on a spiritual/existential level and I should try hard to avoid putting others in that position. The goal for me is to separate the academic and societal discussions on these topics that we need to have from any implication that causes people to feel attacked personally.

George Handzo, BCC, CSSBB
President, Handzo Consulting
Senior Consultant, HealthCare Chaplaincy

Highlights of the October Issue of the Journal of Pain and Symptom Management

Listed below are a few articles from the most recent issue of the journal:

Promoting Evidence in Practice

Multidisciplinary Management of Cancer Pain: Commentary on Chen et al.
Julie Waldfogel and Sydney M. Dy

Normal Vital Signs as Death Approaches: Commentary on Bruera, et al.
Jay R. Thomas

Original Articles

Impact of a Clinical Pharmacist-Led Guidance Team on Cancer Pain Therapy in China:A Prospective Multicenter Cohort Study
Jian Chen, Xiao-yang Lu, Wei-jia Wang, Bin Shen, Yun Ye, Hong Jiang, Qi-sheng Wang and Bin Cheng

Variations in Vital Signs in the Last Days of Life in Patients With* Advanced Cancer
Sebastian Bruera, Gary Chisholm, Renata Dos Santos, Camila Crovador, Eduardo Bruera, and David Hui

Research Priorities in Spiritual Care: An International Survey of Palliative Care Researchers and Clinicians
Lucy Selman, Teresa Young, Mieke Vermandere, Ian Stirling, and Carlo Leget, on behalf of the Research Subgroup of the European Association for Palliative Care Spiritual Care Taskforce

Perceptions of Health Status and Survival in Patients with Metastatic Lung Cancer
Joseph A. Greer, William F. Pirl, Vicki A. Jackson, Alona Muzikansky, Inga T. Lennes, Emily R. Gallagher, Holly G. Prigerson, and Jennifer S. Temel

Special Article

Propensity Scores: A Practical Method for Assessing Treatment Effects in Pain and Symptom Management Research
Melissa M. Garrido

Brief Quality Improvement Report

The Effectiveness of the Geritalk Communication Skills Course: A Real-Time Assessment of Skill Acquisition and Deliberate Practice
Laura P. Gelfman, Elizabeth Lindenberger, Helen Fernandez, Gabrielle R. Goldberg, Betty B. Lim, Evgenia Litrivis, Lynn O’Neill, Cardinale B. Smith, and Amy S. Kelley

To access the articles, you must subscribe to JPSM or be a member of the American Academy of Hospice and Palliative Medicine (AAHPM). For further information on the Academy, call 847.375.4712 or visit aahpm.org.

Submitted by: David J. Casarett, MD, MA, Senior Associate Editor, JPSM

Insights on IOM’s Dying in America Report

For patients and their loved ones, no care decisions are more profound than those made near the end of life. For the millions of Americans who work in or with the health care sector—including clinicians, clergy, caregivers, and support staff—providing high-quality care for people who are nearing the end of life is a matter of professional commitment and responsibility. Health system managers, payers, and policy makers, likewise, have a responsibility to ensure that end-of-life care is compassionate, affordable, sustainable, and of the best quality possible.

      – Dying in America, IOM Report Brief, September 2014

Over the past year and a half, I had the privilege of serving on the Institute of Medicine’s Committee on Approaching Death: Addressing Key End-of-Life Issues, along with fellow AAHPM members, Patricia Bomba, Eduardo Bruera, Pamela Hinds, Diane Meier, Judith Peres, Christian Sinclair, Joan Teno and James Tulsky. The outcome was the development of the now well publicized report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. It is the first report in nearly two decades to address the care of individuals with serious illness and their families – the care you and I provide each and every day. The study concluded that “improving the quality and availability of medical and social services for patients and their families could not only enhance quality of life through the end of life, but may also contribute to a more sustainable care system.”

For those of you who don’t have time to read the full report, here are a few highlights of some of the key recommendations::

  • Government health insurers and care delivery programs as well as private health insurers should cover the provision of comprehensive care for individuals with advanced serious illness who are nearing the end of life. Comprehensive care should
    • be seamless, high-quality, integrated, patient-centered, family-oriented, and consistently accessible around the clock;
    • consider the evolving physical, emotional, social, and spiritual needs of individuals approaching the end of life, as well as those of their family and/or caregivers;
    • be competently delivered by professionals with appropriate expertise and training;
    • include coordinated, efficient, and interoperable information transfer across all providers and all settings; and
    • be consistent with individuals’ values, goals, and informed preferences.
  • Care should be characterized by transparency and accountability through public reporting of aggregate quality and cost measures for all aspects of the health care system related to end-of-life care, including quality reporting for advance care planning and communication.
  • All people with advanced serious illness should have access to skilled palliative care or, when appropriate, hospice care in all settings where they receive care.
  • Educational institutions, credentialing bodies, accrediting boards, state regulatory agencies, and health care delivery organizations should establish the appropriate training, certification, and/or licensure requirements to strengthen the palliative care knowledge and skills of all clinicians who care for individuals with advanced serious illness who are nearing the end of life. All clinicians who care for people with advanced serious illness should be competent in basic palliative care, including communication skills, interprofessional collaboration, and symptom management;
  • Federal, state, and private insurance and health care delivery programs should integrate the financing of medical and social services to support the provision of quality care consistent with the values, goals, and informed preferences of people with advanced serious illness nearing the end of life.
  • Civic leaders, public health and other governmental agencies, community-based organizations, faith-based organizations, consumer groups, health care delivery organizations, payers, employers, and professional societies should engage their constituents and provide fact-based information about care of people with advanced serious illness to encourage advance care planning and informed choice based on the needs and values of individuals.

The report concludes with a reminder that “a person-centered family-oriented approach that honors individual preferences and promotes quality of life through the end of life should be a national priority.” I couldn’t agree more.

These recommendations include action items for everyone – for us as individual clinicians, for us as leaders, for our health care delivery and educational organizations and professional organizations, for legislative and regulatory bodies, for payers, and for individuals and families. How will you act on these findings and recommendations? Have you shared it with your colleagues, the executives in your organization, your legislators, your community organizations? Have you talked with the press? I encourage you to offer your thoughts and reactions to, and how you are leveraging and publicizing, the IOM Report in the comments section of this blog post. The discussion will help us improve the care of our seriously ill patients and their families through the thoughtful work of AAHPM and our respective organizations.

Jean S. Kutner, MD MSPH FAAHPM
AAHPM President