Department of Medicine, Vanderbilt University School of Medicine and the Tennessee Valley Healthcare System, Nashville, TN 37232, USAUnited States
Also available as PDF (figures and tables appear in the PDF).
Most quality improvement in end-of-life care has been related to symptom management, goals of care, cost-effectiveness, and adhering to patient preferences. The patient and family’s ex-perience of care, the environment of care, support for surrogate decision-makers, and public engagement related to end-of-life care receive less attention. We describe three new quality improvement models to improve the patient and family experience of care: 1) involvement of the primary care providers (PCP’s) throughout the patient’s disease course, 2) modeling of decision-making behavior for surrogates using narratives, and 3) increasing engagement with end-of-life care among the public at large. We advocate for the continued development and evaluation of new care models to improve the quality of end-of-life care and the widespread sharing of best practices.
The therapeutic goals of hospice and palliative care include maintaining dignity, fostering respect, honoring privacy, and helping the patient and family to find spiritual comfort and meaning (Table 2). Care that focuses on these goals enhance the patient and family’s experience during a difficult journey, which family survivors will always remember.
Table 2. Therapeutic Implications of Hospice and Palliative Care. - Maintaining dignity - Fostering respect - Honoring privacy - Helping find spiritual comfort and meaning
A comprehensive assessment for hospice and palliative care includes the following domains: 1) social and caregiving, 2) existential and spiritual, 3) physical, 4) psychological, and 5) patient-centered goals of care (Table 3). Quality improvement in end-of-life care is appropriately focused on all of these domains. The three models presented touch primarily on three of these domains: social and caregiving, existential and spiritual, and psychological.
Figure 1. Bereaved Family Survey (BFS) - Elements Referable to Primary Care. Categories of care referable to the patient and family experience of care as defined by the BFS.
Table 3. Comprehensive Patient Assessment. - Social and caregiving - Existential and spiritual - Physical - Psychological - Goals of care
The BFS is a quality assessment tool that helps to measure what matters most: to identify factors important to the patient and family experience of care. There are number of elements in the BFS which overlap with primary care concerns including kindness, caring and respect, willingness to listen, personal care, and emotional support before and following death.3 These elements of care are addressed in the care plans of hospice and palliative care programs which seek and value PCP input. They correspond to potential islands of excellence in healthcare delivery. These “bright spots” which exist are associated with improved outcomes and improved patient and family experience of care. While they do not prove causation, in quality improvement efforts these activities may be worthy of emulation and adoption as best practices by other providers. Involvement of the PCP, and discussions with patients and families relating to PCP contacts could positively impact the patient and family experience of care (Figure 1).
10 Practices which address these elements of care are important to patients and families, and may be worthy of dissemination for further evaluation. Involvement of PCPs in hospice care could serve as a best practice to be emulated by other hospice programs.
The sharing of ICU narratives with online availability harnesses the power of storytelling to help support other caregivers in their time of need. The shared experiences of family survivors as well as the perspective of caring hospice and palliative care providers helps support families during and after their experience and addresses concerns common to all. Narratives can help provide modeling for decision-making. Narratives are rich source of values and goals and they provide a context of life experiences that shape and support the surrogate family member’s experience.12 Additional topics included are the Five Wishes (Table 4)13 and helping families talk to their loved ones about the things that matter most: 1) please forgive me, 2) I forgive you, 3) thank you, and 4) I love you.14
Table 4. Five Wishes. - Who you want to make healthcare decisions for you when you can’t make them. - The kind of medical treatment you want or don’t want. - How comfortable you want to be. - How you want people to treat you.
- What you want your loved ones to know.
The need to de-medicalize advance care planning and to disseminate information on advance directives to the public is urgent. With whom is it more important to address these issues than with other family members who often serve as surrogate decision-makers? Developing an advance directive is all about personal choice, but it is also about preparing loved ones to make it easier for them to make healthcare decisions when the patient cannot.
Receiving care that is consistent with individual values and having the opportunity to talk and make informed decisions about end-of-life care depends on the recording and sharing of these documents with families and others. The Honoring ® Choices® Tennessee website provides a link to the State Health Department advance care planning documents. Educating all healthcare workers about the benefits of advance directives is also important so they can also educate patients and their families about end-of-life care.
Involvement of the primary care physician, modeling of decision-making behavior using narratives, and public education to promote engagement and discourse regarding end-of-life care may improve the patient and family experience of hospice and palliative care. We advocate for continued development of new quality improvement measures and the widespread sharing of best practices to enhance end-of-life care.