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Care at the End of Life


Every Vermonter has been or will be affected by end-of-life issues during the course of their lifetime.  What constitutes quality end-of-life care will be as individual as the people facing the journey.  Some people may choose to spend their final days at home; others may choose to be in a medical setting where health professionals are a call button away; some may choose to employ all that medical technology has to offer while others may choose a minimally invasive path.  There is no “right” choice, and the course an individual takes can be altered along the way.  Though all health issues involve a network of support, quality end-of-life care in particular affects not only the individual facing the last moments of their life but the family and friends who surround them.  Quality of care at the end of life is about advanced planning, pain and symptom management, family and meaningfulness, and continuity of care, with the needs of the individual at the center of the process. 
 
Over the last three years the issue of what constitutes quality end-of-life care and whether or not Vermonters are receiving it has risen to the level of legislative action. Act S.281 was passed in the spring of 2008 leading ultimately in the spring of 2009 to the passage of Act H.435[1], an act relating to palliative care.  Work on this legislation brought together a diversity of individuals and groups with the single purpose of improving the quality of life for all Vermonters.  Coinciding with the passage of this legislation, VPQ began work on a year-long initiative to improve end-of-life care in Vermont using the Collaborative model.  As is discussed below, this initiative did not succeed but did help to highlight areas of need for the professionals serving people near the end of life.
 
Chapter Outline 
  • Nationwide, Economic Realities
  • Excellent Collaboration at End of Life (ExCEL)
  • Vermont Collaborative on End-of-Life Care
  • Legislative Update
  • Next Steps
Nationwide, Economic Realities
Seventy-seven percent of Medicare decedents’ expenditures occur in the last year of life, 52% of them in the last 2 months and 40% in the last month.  Inpatient expenses accounted for over 70% of the decedent’s total costs.[2]  Costs associated with end-of-life care are largely rooted in hospital ICU expenditures.  In 1995, ICU costs accounted for roughly 20% of total hospital spending.  Since that time, the average daily ICU cost is $2000 to $3000, and for patients nearing the end of life, these costs can be significantly greater.
 
Terminally ill patients typically live out their last days in a critical care unit and receive resource intensive care until the very end.  Patients who die in the ICU often do so at great physical and emotion discomfort and monetary expense.  The high cost of ICU stays is directly related to the degree of utilization of diagnostics imaging and specialty procedures. Advances in diagnostic imaging, wound closure, and surgery are driving the demand and costs of new medical technologies.
 
The prime focus of any end-of-life care policy reform should not be about cost savings, but rather cost shifting.  Resources can be shifted from the ICU into hospice care, home health care, and long-term care.  Cost-benefit analyses of care takes into consideration two factors; the effectiveness of intervention and the resources used to deliver that intervention.  If terminally ill patients are receiving non-beneficial care in ICU settings at such high costs, then other resources need to be made available for these patients.  Hospice care that focuses on pain management, rather than invasive procedure, is an effective tool that in the long run may help to reduce costs at end of life.  In the short term, however, immediate cost savings are unlikely.  Developing a hospice program or building a live-in hospice facility is all costly.  For terminally ill patients, facilities devoted to controlling a patient’s pain and fostering physical, emotional, and spiritual wellbeing may in fact reduce overall hospital costs, and certainly improve the quality of care.
 
Excellent Collaboration at End of Life (ExCEL)
Comprised of individuals and organizational representatives with a wide range of experiences and perspectives regarding end-of-life care in Vermont, ExCEL became a subcommittee of VPQ in February of 2004.  The mission of the group was to serve as a network of groups and individuals working together to improve end of life and grief experiences for people in Vermont, through education and the sharing of resources.  ExCEL membership is broad.  Members include: representatives from community and academic medical centers, hospices, visiting nurse associations, the Vermont Funeral Directors Association, the Vermont Medical Society, the Vermont Ethics Network, the Vermont Department of Aging and Disabilities, the Vermont Department of Health, the Community of Vermont Elders, the Vermont Chapter of the American Cancer Society, the Vermont Office of the Attorney General, the University of Vermont School of Medicine, as well as insurers, individual physicians, nurses and clergy.
 
Past Work
In May of 2005, ExCEL was awarded a grant to adapt and field test an end-of-life care survey for the purpose of planning a statewide survey.  The survey was administered to survivors of Vermonters who died in any setting statewide, including hospitals, nursing homes and at home.
 
A total of 976 surveys were sent out to individuals listed as the contact person on the death certificates for all Vermonters who died from natural causes in the fourth quarter of 2004 (October – December, 2004).  Of the surveys sent out, 125 people responded.  Results of the survey indicated that the majority of the respondents felt that pain, trouble breathing, and anxiety were common experiences during end-of-life care, but that these issues were adequately addressed by the health care provider.  The majority of people received palliative care during the last week of life, and most received their care outside of the hospital setting.  
 
Many respondents shared additional comments.  The comments focused on several main themes, including:  a need for increased hospice and respite services; a lack of information about what to expect in the last hours of life and a need for increased knowledge in this area; the importance of valuing the participation of the patient and caregiver in the dying process;  a need for inclusion of complementary and alternative medicines; and finally, an expression of gratitude for the medical personnel who went out of their way to ease the dying process, both emotionally and physically, for the patient and their caregivers. 
 
Vermont Collaborative on End-of-Life Care
Discussions with the ExCEL membership brought to light that the issues Vermonters face at the end of life are linked with the issues that Vermonters face across the healthcare spectrum: availability of resources and support, chronic disease management including Alzheimer’s, and chronic pain.  The need for improved quality of care at end of life needs to remain a high priority for all Vermonters.  
 
To address this need, the board and staff of VPQ began work on the Vermont Collaborative on End-of-life Care.  The Collaborative used the framework provided by the Chronic Care Model[3] developed by Ed Wagner, MD, MPH, (Director of the MacColl Institute for Healthcare Innovation, Group Health Cooperative of Puget Sound), and his colleagues during the 1990’s.  The Chronic Care Model identifies six key components of a successful healthcare system:  the community, the health system, self-management support, delivery system design, decision support and clinical information systems.  Success is defined as productive interactions between an informed, activated patient and a prepared, proactive healthcare team.  To achieve quality improvement with these six components, the Collaborative teams were coached in both Clinical Microsystems methodology[4] and the Model for Improvement[5].  The Clinical Microsystems Methodology looks at the practice team as a microsystem of patient care within the larger healthcare system.  It is based on the idea that improving individual clinical microsystems will improve the entire healthcare system.  The methodology uses the 5 P’s: purpose, patients, professionals, patterns, and process, to identify areas where quality improvement needs to occur.  Improvement is achieved through the Model for Improvement using small, rapid cycles, referred to as PDSA cycles for Plan-Do-Study-Act, to bring about quality improvement.
 
As part of the Vermont Collaborative on End-of-life Care, teams of healthcare professionals and community members committed to a 9-12 month period of rapid change to improve healthcare in their communities.  Each team tests a series of small-scale changes in consultation with other teams and experts from around the state focusing on: pain and symptom management, advance care planning, family and meaningfulness, and continuity of care.
 
VPQ has seen this methodology succeed in the chronic care arena, and the Institute of Healthcare Improvement (IHI) has used this model for improving end-of-life care at the national level.  The results of the IHI Breakthrough Series Collaborative on Improving End-of-Life Care are outlined in “Improving Care for the End of Life:  A Sourcebook for Health Care Managers and Clinicians”.[6]
 
Over 45 people representing 11 teams from communities around Vermont attended the kick-off Learning Session on Friday May 23, 2008.  Topics included an introduction to quality improvement and change methodology, information about the national Collaborative, a presentation on how this work has been applied in a local community, along with information about advanced directives.  There was also time for participants to begin working on changes they would like to make in their own practice setting using the Model for Improvement and Clinical Microsystems methodology.
 
Zail Berry, MD spoke on the topic of “Pain and Symptom Management at the End of Life “at the second Learning Session held on September 5, 2008.  Additional learning focused on Flow Charting of key processes by the teams.  Thirty-one participants attended this Learning Session.  Teams had time to share the aims they were working on with Collaborative members gaining support and sharing ideas. 
Examples of aims were:
  • To establish a DNR order identification system that is accepted and recognized throughout the hospital service area by staff in the hospital, in the nursing homes, and on the EMS team; 
  • To have a 90% increase in the number of cancer patients treated at a practice who successfully accessed needed psychosocial services;
  • To create a Palliative Care Team focused on improving the continuity of care for patients and families dealing with end-of-life issues; and
  • That 90% of patients facing end-of-life issues have standing orders for pain, anxiety, and dyspnea.
While some of the participants came with a team, many came as individuals.  In some cases teams who were represented during Learning Session I were unable to attend at all.   Lack of administrative and fiscal support was identified as the key obstacle to team participation.  The work of healthcare quality improvement requires additional work and dollars, including:
  • Time needed to engage in change;
  • Time to attend learning sessions; and
  • Fiscal support to advance facility changes that support improvements such as:
    • creation of a hospice room, cart and/or pamphlets,
    • IT changes etc.  (Many of the services and resources that are goals for these community initiatives are not reimbursable under the current health care financing system.)
The third learning session was cancelled due to poor registration numbers despite the fact that Steve Kiernan was scheduled to be the speaker.  At the same time, the ExCEL members, who in the past had used the meetings to provide a vital connection for discussion of legislative issues, were being faced with similar obstacles.  Attendance at meetings, even those meetings needed to plan and coordinate the Collaborative work, dwindled to three or four participants.   At this point, the work of both the Vermont Collaborative on End-Of-Life Care and the ExCEL subcommittee were put on hold as VPQ sought to reevaluate how best to serve the needs of the participating teams and make an impact on the quality of care at end of life.  
 
Legislative Update
In the spring of 2008, Vermont passed S.281:  An act relating to end-of-life care and pain management.  This act called for the creation of a study committee that would report back to the house and senate by January of 2009.  The focus of the report was to look at palliative care, end-of-life care, and pain management in Vermont.
 
VPQ staff participated in the Palliative Care, End-of-Life Care, and Pain Management Study Group which began meeting in August of 2008 and continued to meet throughout the fall months.  Staff presented on the work of the ExCEL subcommittee, and the work of the Vermont Collaborative on End-of-Life Care, relaying successes and obstacles.  A key suggestion put forth during testimony was the recurrent need for consistent End-of-life leadership, a clinical champion, at a statewide level.  Members of ExCEL suggested the idea of a state ombudsman focused on Palliative and End-of-Life Care issues.  A subcommittee of the broader legislative study committee met to discuss this idea and this led to the work outlined in section 18 of Act H.435.
 
What’s next?
The board and staff at VPQ are committed to improving the quality of end-of-life care for Vermonters and as such are committed to continuing our involvement with the statewide work that is occurring.  VPQ staff participates in the Palliative Care CME Activity Workgroup led by the University of Vermont Medical School in response to section 19 of H.435.  This section states that “No later than January 15, 2010 the Vermont board of medical practice and the Vermont board of nursing shall report to the house committee on human services and the senate committee on health and welfare regarding their recommendations for improving the knowledge and practice of health care professionals in Vermont with respect to palliative care and pain management.”  VPQ staff are also members of the Palliative Care Task Force convened by the Vermont Ethics Network (VEN) as directed by section 18 of H.435, “The general assembly requests that the Vermont Ethics Network, Inc. convene a task force to coordinate palliative care and pain management initiatives in Vermont, help people to gain access to services, and propose solutions for addressing gaps in services and educating consumers about their rights under the patients’ bill of rights for palliative care and pain management.”  We will continue to act as a state resource and will seek ways to expand our involvement as appropriate.


[1] http://www.leg.state.vt.us/docs/2010/bills/Passed/H-435.pdf
[2] John M. Luce, Rubenfield, Gordon D. “Can Health Care Costs be Reduced by Limiting Intensive Care at End of Life”.  Department of Medicine, University of California, San Francisco, California; 2001.
[6] Lynn, Joanne  MD, Schuster, Janice Lynch, Kabcencell RN, MPH. Improving Care for the End of Life:  A Sourcebook for Health Care Managers and Clinicians.  Oxford University Press.  2000.