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2006
Improving End-of-lifeExperiences for Pennsylvanians
Task Force for Quality at the End ofLife
Report and Recommendations to Governor Edward G. Rendell
 
We applaud Governor Rendell for hisleadership in creating theTask Force
for Quality at the End ofLife and for allocating resources to facilitate this effort. Without his support, this report would neverhave come about. This report is the work ofthat Task Force, and these are its primary goals:
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To create momentum for change in policy, systems, and grassroots community activity to reform and improve palliativeand end-of-life care;
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To mobilize stakeholders in the public and private sectors for action by providing them with information and pathways towardreform ofpalliative and end-of-life services and care;
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To energize local citizen action groups throughout the state to organize and create change around palliative and end-of-life care.In sharp contrast to 1900, when acute infections constituted the leading causes ofdeath, today most people die from chronicprogressive illnesses. The cumulative effects ofthese illnesses on individuals and their families present an increasingly urgentchallenge for our health care delivery system, particularly in Pennsylvania, where 15% ofthe population is 65 or older, as opposedto 12% nationally. Other groups, such as children, people with disabilities, people living in rural areas, state prisoners, and the17% ofPennsylvanians who are members ofminority groups, all require action by providers and policy makers to address issuesassociated with serious illness and the need for improved palliative and end-of-life care.A recent report commissioned by the Robert Wood Johnson Foundation, evaluated each ofthe 50 states on a number ofparametersrelated to the provision ofend-of-life care. Most states earned poor grades on the majority ofthe elements; Pennsylvania’s averagegrade was a D.In addition to the goals mentioned above, our state’s reform ofpalliative and end-of-life care issues must addressthe following areas ofconcern:
Executive Summary...........................................1Background.........................................................3Advance Care Planning and Policies..................5Palliative Care.....................................................7Financing Care for the Last Phase of Life ........9Special Populations...........................................12Professional Education.....................................15Addressing the Community..............................15Research, Measurement, and Data ..................16Conclusion ........................................................17Detailed Task Force Recommendations...........18List of Contributors & Task Force...................35
Table of Contents
1
Executive Summary
 
 2
Advance Directives
Pennsylvania requires improved, more supportive policiesgoverning advance directives and greater awareness oftheadvance care planning process through education ofhealthcare professionals and the broader community. In addition,Pennsylvania should adopt a system to assure continuityofcare and respect for patient preferences across care settings.
Provision of Palliative Care
Ifwe are to ensure the optimal provision ofcare for seriouslyill and dying individuals, then improved standards for palliativecare, better coordination ofcare, and more highly trainedpersonnel in health care facilities are key elements. This isespecially relevant for acute care hospitals and skilled nursingfacilities where, currently, the majority ofPennsylvanians die.
Financing Care
Medicare currently spends 27% ofits total dollars on people whoare in their last year oflife. About 70% ofpeople who die eachyear are covered by Medicare, with about 13% also covered byMedicaid. Advances in technology and modern medicine haveled to an increase in life expectancy and in the number ofpersonsliving with chronic illnesses. The effect ofthese increases notonlyplaces a greater burden on acute care and long-term carefunding, it also fails to direct resources where they are needed.State policy makers, health care systems, commercial healthinsurers, employers, and consumer advocacy groups needto promote public awareness ofpalliative care and worktogether to design new health care delivery and financialstructures that establish an optimal balance betweenquality palliative and acute care.
Special Populations
Attitudes, values, and needs for care near the end oflife varyamong individuals and groups. Populations with particularconcerns include older adults, children, racial-ethnic minorities,people with disabilities, rural populations, and prison populations.Moreover, some Pennsylvanians believe that the manner inwhich end-of-life decisions are made, applied, or deliveredcan have a different and potentially harmful impact on themin the absence ofappropriate safeguards.
Professional Education
The shortcomings in professional palliative and end-of-lifeeducation have been thoroughly documented. Pennsylvania’shealth care community requires a more comprehensive palliativeand end-of-life curriculum. Educational reform is needed andmust be implemented by all ofthe various institutions andgroups charged with maintaining the content and qualityofhealth professions education.
Raising Awareness in the Community
There are several key topics that are crucial to improvingthepublic’s understanding ofpalliative care and the end-of-lifeexperience. They are: communication about death and dyingin the context ofsignificant personal relationships; recognitionofand support for the lay caregiving experience; and accurateinformation about hospice and palliative care, and about painand symptom management.
Research, Measurement, and Data
As its elderly population continues to grow, Pennsylvania urgentlyrequires improved systems for research, analysis,measurement,and consistent tracking ofefforts in palliativeand end-of-lifecare. Both governmentaldepartments and non-governmentalorganizations should be encouraged to share in these tasks.
In Conclusion
Providing quality end-of-life experiences for all Pennsylvaniansis a challenge ofincreasing urgency, and one that must be tackledby all ofus. By working together as legislators, governmentofficials, medical professionals, educators, activists, and citizens,we can address these most basic conditions ofhuman life withthe intelligence, compassion,and resources they deserve.
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