Workgroup Presentation at Promoting Excellence in End-of-Life Care
Annual Meeting
February 20, 2002
St. Pete’s Beach, Florida
Sue Bumagin, Workgroup Director
Introduction:
The Workgroup Program was developed in response to the arrival of almost 700
initial Letters of Intent sent to the Promoting Excellence Program Office, which
was slated to make only 22 grants. Since that time, eight Workgroups have been
developed to respond to different medical niche areas and special populations.
These 18-month Workgroups are in various stages of development – one has
completed its work, several are in the process of finishing up, and a few are just
beginning.
The mandate for Workgroups is:
 To create a research and development agenda to improve and better
integrate good palliative care at the end of life, addressing gaps, needs,
barriers to care, educational opportunities, and identifying potential products
to enhance the field and policy development.
 To produce, in writing, a Recommendations to the Field summary.
You will see that many of the Workgroups have gone above and beyond our
expectations. A table of Workgroup products is at the back of the room and all
information I share with you can be found in the Workgroup Section of the
Promoting Excellence Website. I will summarize the work of five Workgroups,
and will be followed by the Chairperson or Co-chairperson of three Workgroups:
Steve Seninger, Chair of the Cost Accounting Workgroup; Bob Milch, Co-chair of
the Surgeons Palliative Care Workgroup; and Carla Alexander, Co-chair of the
HIV/AIDS Workgroup.
The Children's International Project on Palliative/Hospice Services
(ChIPPs Program)
The ChIPPS Workgroup was active from November 1998 to August 2001, with more
than thirty international leaders in the field of pediatric palliative care participating, under
the auspices of the National Hospice and Palliative Care Organization.
The Children's International Project on Palliative/Hospice Services has completed its
work to enhance the science and practice of pediatric hospice and palliative care, and to
increase the availability of state-of-the-art services to families. They have produced a
Compendium that is the most comprehensive reference on pediatric palliative care
available in the United States. Divided into four sections, the Compendium includes:
Models of Pediatric Palliative Care: defines the need for palliative care,
models of care delivery, program implementation, and models for education;
Communication, Ethics and Decision-making: defines pain management and other
symptoms in children; provision of hospice and palliative care to newborns;
Psychosocial and Spiritual Care of Children Living with Life-threatening
Conditions: includes spiritual and bereavement issues.
The Compendium also includes an extensive Appendix of educational, policy and
administrative materials intended to assist hospices and others in creating pediatric
palliative services.
End-Stage Renal Disease Peer Workgroup
The End-Stage Renal Disease (ESRD) Peer Workgroup has worked to improve
supportive care and quality of life for dialysis patients since March 2000.
Chaired by Alvin Moss, MD, Director of the West Virginia University Center
for Health Ethics and Law, this Workgroup consists of 23 members including
nurses, social workers, nephrologists, and kidney transplant
recipients. Its final meeting was held in October 2001 and they are finalizing a
Recommendations to the Field summary that comes out of the work of
three subcommittees:
Quality of Life Subcommittee:
 Determined that current tools to assess quality of life are inadequate
because they fail to address psychosocial and spiritual concerns. WG has
identified and revised an instrument to address those concerns and is in
the process of testing it.
Quality of Dying Subcommittee:
 Created a first-ever Model Do Not Resuscitate Policy for Dialysis
Units for use by individual and corporate dialysis units. Plans are for an
article to be published in the American Journal of Kidney Diseases that
will include a model policy and procedure on Do Not Resuscitate Orders in
Dialysis Units.
 In process of analyzing results of three regional Focus Groups with
dialysis patients and bereaved families from various ethnic and geographic
backgrounds to determine what is really important to them at life's end and what can be
done to improve end-of-life care for ESRD patients.
Education Subcommittee:
 Calling on ESRD Networks to recognize their role in educating dialysis
units about end-of-life care.
 PowerPoint presentation of adaptation of Physician Education in
End-of-Life Care to nephrology [ENEC] (scheduled for presentation at the
Renal Physicians Association meeting in March 2002) with accompanying pre- and posttests.
 A bibliography of reference materials relating to palliative care
for ESRD patients.
 Syllabus of "End of Life Care in Nephrology: Supportive Care for
the Renal Patient: Modern Palliative Care Principles Applied to the ESRD
Patient" presented at the American Society of Nephrology and World Congress
of Nephrology, Oct. 2001.
 Consultation to Program Directors of Nephrology Fellowship programs
to encourage inclusion of palliative care into core curriculum topic areas.
 Training session for the Forum of ESRD Networks and Centers for
Medicare and Medicaid Services on end-of-life care and why palliative care
should be part of the conditions for Medicare participation of dialysis
units. The recommendation will be that dialysis units must show evidence
that palliative care is part of the long-term care plan for ESRD patients.
The ESRD Workgroup has made considerable progress in bringing palliative care issues
to the attention of the nephrology community, including an invitation from the Chair of the
American Board of Internal Medicine Subspecialty Board on Nephrology to submit
questions on end-of-life care for the board certification examination. In addition, the
Renal Physicians Association (RPA) and the American Society of Nephrology's (ASN)
joint Quality Patient Care Committee at their October 2001 meeting decided to
revise their position statement on Quality Care at the End-of-Life to incorporate
Workgroup findings. This revised position (originally approved in 1997; approved as
revised 1/19/02) was completed with input from the American Nephrology Nurses'
Association; the National Kidney Foundation Council of Nephrology Social Workers; the
Forum of ESRD Networks; and the American Association of Kidney Patients. The
statement will be widely circulated.
Critical Care Workgroup Summary
Established in January 1999, the Critical Care Workgroup has brought together a group
of 45 thought leaders in end-of-life in critical care from North America, Europe, Israel,
and Australia. This Workgroup is chaired by Mitchell Levy, M.D., Professor of Medicine
at Brown University and Rhode Island Hospital. Participants have established a
research agenda, fostered funding from private foundations for critical care end-of-life
and palliative care projects, and developed educational initiatives to inform curricula in
palliative and end-of-life teaching in North America.
To date, the Workgroup’s accomplishments include:
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A research agenda produced from the first consensus conference prior to
workgroup formation, chaired by Randy Curtis and Gordon Rubenfeld, editors
of Managing Death in the ICU, Oxford University Press, 2000. (Findings
published in Critical Care Medicine 2001; 29(10)2001-6).
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A supplement to Critical Care Medicine (2001, Vol. 29, No. 2 “Critical Care:
Blending Science and Compassion”) was edited by two members of the
Workgroup. All authors in this supplement were members of the Workgroup.
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Funding by The Robert Wood Johnson Foundation of a proposal for the initial
phase of formal research arising out of the workgroup agenda. This project
included three separate arms:
1) Description of the epidemiology of death in ICUs in the United States;
2) Articulation of the experience and views of a nationally representative
sample of ICU directors with respect to care of patients dying in ICUs;
3) Development of a set of valid and reliable measures of patient and familycentered outcomes and processes of care for patients dying in ICUs that
are feasible for use in diverse ICU settings - an audit tool for in-depth
evaluation of end-of-life practices in ICUs. This tool will look at various
aspects of end-of-life care, including contact between patients, families
and attending physicians; presence of pastoral or social service care;
pain and symptom management; family perceptions of end-of-life care,
etc. This tool will also provide the foundation for future evaluations and
standardization of end-of-life care assessment.
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Development of a “Compassionate Care” track for the 2001 Society of Critical
Care Meeting. This is the first time a major critical care society devoted such
a large portion (20%) of an annual meeting to these issues.
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Development of a sample of protocols and pathways for end-of-life care
(soon to be placed on the PE Website).
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Development of a professional and patient version of a video
“Compassionate Care in the ICU: Creating a Humane Environment”.
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Formation of a subcommittee to work with the American Board of Internal
Medicine on developing an end-of-life module for the certification exam.
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Development of a comprehensive bibliography for critical care end-of-life
issues to be placed on the PE Website (currently nearing completion).
The Critical Care Workgroup will have its final meeting in late February 2002, during
which time, they will discuss plans for Phase II of the Workgroup’s life cycle.
Amyotrophic Lateral Sclerosis (ALS) Workgroup
ALS is a progressive, incurable neuromuscular disease that affects @ 4,600 newly
diagnosed people in the United States each year, who live an average of three to five
years after diagnosis.
The Amyotrophic Lateral Sclerosis (ALS) Workgroup has worked to identify key factors
necessary to improve palliative care for ALS patients and their families since May 2000.
Chaired by Hiroshi Mitsumoto, MD at the Columbia University Neurologic Institute in
New York and managed by the ALS Association (ALSA) in California, this Workgroup
consists of 22 members including neurologists, nurses, palliative care specialists, and
social workers. To accomplish its goals, the Workgroup divided into four subgroups:
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communication, ethics, and decision-making;
bereavement, spirituality, caregiving, quality of life, and psycho-social issues;
physical symptoms that include respiratory, nutrition and hydration, pain, mental
status and sleep disturbances;
policy, access to care and funding for end-of-life care.
The ALS Workgroup, which had its final meeting in November 2001, will complete a
Recommendations to the Field summary in March 2002 that will serve as a roadmap for
policymakers, caregivers, physicians and others who are working to improve the lives of
ALS patients and families. These recommendations will serve as a “call to action” for
the ALS community that will help foster changes in health policy, reimbursement and
medical education.
Huntington’s Disease Palliative Care Workgroup February 2002
This WG, in its formative stages, will have its first meeting in Atlanta on March 3-4, 2002.
WG Chair is:
Richard Dubinsky, MD
Associate Professor
Department of Neurology
University of Kansas Medical Center