Delaware Health Care Commission End-of-Life Workgroup Presentation of Final Report and Recommendations April 7, 2016

Background  At the November Health Care Commission meeting, the Board voted to convene a workgroup to assess and make recommendations regarding End-of-Life care and related issues in Delaware  The culmination of the workgroup’s efforts was to be a report with findings and recommendations to be presented to the Board on or before April 1, 2016, including a recommendation for how to approach ongoing support and consideration of end-of-life issues in Delaware

 Review relevant information and best practices related to end-of-life and palliative care  Identify key end-of-life care issues, including advanced care planning  Develop recommendations and options for consideration regarding:  Consumer outreach and education activities  Professional outreach, training, support and education  Enabling access to palliative care services and supporting the capacity in the health care system  Other recommendations Charge of the Workgroup 3

 Five workgroup meetings in Dover between December and March  Public listening sessions in Newark, Dover, Seaford and Lewes in February  Posting of initial report draft for public comment in late February to early March  Review and incorporation of robust public feedback through meeting attendance, listening sessions and written comments through a dedicated address  Over 90 unique contributors Workgroup Activities

Listening Session Key Themes  Each person must decide what is best for him or herself  It is important to talk early and often with loved ones, caregivers, providers and others about personal wishes to encourage clear understanding  Patients and their families often struggle to receive/provide the necessary care outside of a hospital setting  Providers need education and training on end-of-life and palliative care to properly address patient needs, with a focus on cultural competency 5

Listening Session Key Themes  Many participants expressed concern about cost factoring into decisions about end-of-life and palliative care, especially for patients and families with limited resources  There was much discussion around the importance of the compassionate care offered through palliative medicine and its role in improving quality of life for seriously or terminally ill patients. This is care designed to support patient and family preferences, offer options and ultimately provide whatever the patient wishes 6

Review of Existing Data The workgroup’s efforts were also supported by reviewing Delaware and national data from: Delaware Center for Vital Statistics Centers for Disease Control and Prevention Delaware Healthcare Association’s Palliative Care Council Survey U.S. Census Bureau Population Reports Center to Advance Palliative Care 7

Ongoing Structure 8 Key Finding Efforts related to palliative and end-of-life care in Delaware exist but are largely uncoordinated, preventing consumers from accessing information and services in an efficient manner. Key Recommendation Designate an entity with responsibility for coordinating all efforts related to palliative and end-of-life care in Delaware. The workgroup recommends that the Delaware End-of-Life Coalition assume this role and that resources be provided to support this effort.

Consumer Awareness 9 Key Findings  Public education and engagement about end-of-life care issues is needed for a variety of audiences involved in decision-making  Consumers are confused about the distinctions among forms and definitions related to end-of-life and palliative care  Many consumers believe that creation of an advance care directive or completion of a DMOST form requires limiting options for life-saving measures

Consumer Awareness 10 Key Findings (continued)  Cultural sensitivity is extremely important in addressing and discussing the considerations and options around end-of-life care with different audiences  Delaware has many existing resources that may be utilized to support a public awareness campaign  Several well-established national programs and initiatives offer useful resources for Delaware to leverage in developing a state-specific campaign

Consumer Awareness 11 Key Recommendations  Develop, implement and evaluate a Delaware-specific awareness campaign that engages an array of stakeholders and leverages the wealth of available resources in the state. The campaign should be formally aligned with the work of the DCHI’s Healthy Neighborhoods and Patient and Consumer Advisory Committees  Key components must include standardized educational materials, outreach through a wide array of stakeholders and mediums, specific resources for those responsible for carrying out patient wishes and be linguistically appropriate and culturally sensitive

Professional Outreach and Training 12 Key Findings  Education and training opportunities are emerging but largely disconnected  Providers do not always understand the system of palliative care and therefore may not refer patients to appropriate resources and supports  Patient goals and preferences may conflict with those of the provider  Frequent clinician-patient conversations help to clarify treatment options and choices among patients, clinicians and loved ones

Professional Outreach and Training 13 Key Recommendations  Support and monitor progress toward inclusion of end- of-life and palliative care services and supports in healthcare delivery  Include end-of-life and palliative care issues in the DCHI’s workforce learning and re-learning curriculum  Include end-of life and palliative care issues in the work of the DCHI’s Graduate Health Professional Consortium  Specifically promote palliative and end-of-life care educational offerings as a means to meet continuing education requirements for providers at all levels

Enabling Access to Palliative Care 14 Key Findings  Most hospitals in Delaware have a palliative care program and all have indicated an interest in expanding offerings in the future  Patients and caregivers face many challenges and limitations in receiving and providing care outside of the hospital setting  Provider and patient understanding of the offerings and benefits of palliative and end-of-life care is often lacking and therefore leads to underutilization

Enabling Access to Palliative Care 15 Key Recommendations  Support and monitor the growth of palliative and end-of-life care services in inpatient and community-based settings  Facilitate coordination among Delaware’s providers as they develop programs and resources related to palliative and end- of-life care  Build and continue to update a compendium of resources related to end-of-life and palliative care  Review existing policies limiting the ability of home care service providers and family members to perform healthcare-related tasks on behalf of patients  Explore mechanisms to make patient wishes readily accessible in a variety of settings

Other Items 16 Key Finding  Delaware-specific data related to the quality, availability and utilization of end-of-life and palliative care services is not readily available Key Recommendation  Using existing data and data collection tools as a foundation, develop and implement a comprehensive, statewide approach to gathering and using data related to end-of-life and palliative care. This may include surveys and the use of data available through the Delaware Health Information Network

Next Steps 17 To support the designation of a new entity responsible for coordination and to support the change, the workgroup recommends a transitional period of six months during which:  A subgroup of the full workgroup will continue to coordinate  The HCC will retain an oversight role and provide limited administrative support to enable a smooth transition The target date for full transition is September 30, 2016

 A webpage for the End-of-Life Workgroup has been set up on the HCC website: html html  All meeting materials are posted to the site  Feedback is always welcome at For More Information

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