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.

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

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

Original Articles

Strategies to Support Recruitment of Patients With Life-Limiting Illness for Research: The Palliative Care Research Cooperative Group
Laura C. Hanson, Janet Bull, Kathryn Wessell, Lisa Massie, Rachael E. Bennett, Jean S. Kutner, Noreen M. Aziz, and Amy Abernethy

Symptom Incongruence Trajectories in Lung Cancer Dyads
Karen S. Lyons, Christopher S. Lee, Jill A. Bennett, Lillian M. Nail, Erik Fromme, Shirin O. Hiatt, and Aline G. Sayer

Repeated Assessments of Symptom Severity Improve Predictions for Risk of Death Among Patients With Cancer
Rinku Sutradhar, Clare Atzema, Hsien Seow, Craig Earle, Joan Porter, and Lisa Barbera

Palliative Radiation Before Hospice: The Long and the Short of It
Heidi N. Yeung, William M. Mitchell, Eric J. Roeland, Beibei Xu, Loren K. Mell, Quynh-Thu Le, and James D. Murphy

Mindfulness-Oriented Recovery Enhancement Ameliorates the Impact of Pain on Self-Reported Psychological and Physical Function Among Opioid-Using Chronic Pain Patients
Eric L. Garland, Elizabeth Thomas, and Matthew O. Howard

Special Series on Research Methodology

Ethical Conduct of Palliative Care Research: Enhancing Communication Between Investigators and Institutional Review Boards
Amy P. Abernethy, Warren H. Capell, Noreen M. Aziz, Christine Ritchie, Maryjo Prince-Paul, Rachael E. Bennett, and Jean S. Kutner

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

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

Highlights of the November 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

Methylprednisolone for the Prophylaxis of Pain Flare: Commentary on Yousef and El-mashad
Susannah Ellsworth

Challenges to Pain Medicine Management at Home: Commentary on the Schumacher et al. Papers
Jane B. Hopkinson

Original Articles

Pre-Emptive Value of Methylprednisolone Intravenous Infusion in Patients With Vertebral Metastasis. A Double-Blind Randomized Study
Ayman Abd Al-maksoud Yousef and Nehal Mohamed El-mashad

Pain Medication Management Processes Used by Oncology Outpatients and Family Caregivers Part I: Health Systems Contexts
Karen L. Schumacher, Vicki L. Plano Clark, Claudia M. West, Marylin J. Dodd, Michael W. Rabow, and Christine Miaskowski

Pain Medication Management Processes Used by Oncology Outpatients and Family Caregivers Part II: Home and Lifestyle Contexts
Karen L. Schumacher, Vicki L. Plano Clark, Claudia M. West, Marylin J. Dodd, Michael W. Rabow, and Christine Miaskowski

A Randomized Trial of the Effectiveness of Topical “ABH Gel” (Ativan®, Benadryl®, Haldol®) Versus Placebo in Cancer Patients With Nausea
Devon S. Fletcher, Patrick J. Coyne, Patricia W. Dodson, Gwendolyn G. Parker, Wen Wan, and Thomas J. Smith

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

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

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

What is the difference between Coaching, Mentoring, Counseling, Training and Managing?

by William “Marty” Martin, PsyD MA MPH MS CHES

ACPE faculty member William “Marty” Martin presented a focused session on Coaching and Mentoring at the AAHPM Leadership Forum: Ascend program, September 14-16, 2014. AAHPM Ascend is a new intensive program included in the AAHPM’s comprehensive new Leadership Forum.

Palliative care/hospice leaders must be able to coach, mentor, counsel, train and manage depending upon the individual and situation. How do I know when I’m doing what? Before differentiating each one of these, all of these share the following in common: communication; interpersonal sensitivity; and relationships. The focus of a coach is to guide others by asking questions and structuring a process for that individual to achieve his/her goals. In comparison, a mentor may also guide others in achieving their goals but mentoring is less focused on performance and specific tasks. Mentoring has a broader focus than coaching. Mentoring emphasizes both the professional and personal development of the individual.

Counseling seeks to explore the underlying dynamics of individuals and their relationships. Counselors and coaches both ask questions but counselors tend not to address tasks and performance. The goal for counseling is to promote self-understanding and self-acceptance.

Training is all about the acquisition and mastery of knowledge and skills. As a trainer, you must rely upon other tools other than asking questions such as lecturing, giving feedback on assignments, and in some cases, offering evaluative feedback.

Finally, as a manager, the aim is to assure that the individual “does his/her job” or “fulfills his/her contractual duties.” In reality, if you are a physician leader, then you function as a coach, mentor, counselor, trainer and manager. You want to be sure you give a clear signal to the other individual to reduce any role confusion and role conflict.