Understanding Hospice, Palliative Care and End-of-life Issues 25% of deaths occur at home - more than 70% of Americans would prefer to die at home (Robert Wood Johnson Foundation)

Hospice Provides support and care for those in the last phases of life-limiting illness Recognizes dying as part of the normal process of living and neither hastens nor postpones death Focuses on quality of life for individuals and their family caregivers Patient/family focused Interdisciplinary Provides a range of services: Interdisciplinary case management Pharmaceuticals Durable medical equipment Supplies Volunteers Grief support

Palliative Care Curative care Treatment that enhances comfort and improves the quality of an individual’s life during the last phase of life The expected outcome is relief from distressing symptoms, the easing of pain and/or enhancing the quality of life Focuses on quality of life and death, and views death as a natural part of life Hospice that isn’t defined by the 6 month hospice benefit. It’s important to understand the subtle differences between palliative care and hospice. Most hospices were “designed” based on the HMB model. That model limits admission to hospice to those with 6 mo prognosis and the discontinuation of “curative” treatments. Palliative care doesn’t have those limitations. Palliative care programs don’t have to provide the same range of core services – IDT, bereavement, spiritual, social work, patient/family, etc. We’ll talk more about this as we explore the hospice model. All hospice is palliative, all palliative isn’t hospice and doesn’t have to provide same range of services. Curative care Focuses on quantity of life and prolonging of life

Where Hospice is Provided Home Nursing Facility Assisted Living Facility Hospital Hospice residence or unit Prison, homeless shelter – where ever the person is PATIENT CRITERIA Life-limiting illness, prognosis is 6 months or less if disease takes normal course Live in service area Consent to accept services Delivered across care setting. Man on the porch

End of Life Care Durable Power of Attorney for Health Care is a legal document through which a person appoints someone else to act on the person's behalf in making medical treatment decisions in case of future incapacitation. Living Will is document in which a person specifies the kind of life-saving and life- sustaining care and treatment he or she does or does not wish to receive in the event the person becomes both incapacitated and terminally ill. Advance Directive is a written statement of instruction in a form recognized by individual state law that addresses the provision of health care in the event of incapacity. Forms typically include the living will, the durable power of attorney for health care and the Health Care Proxy/Surrogate. Health Care Surrogate A competent adult has the right to designate a surrogate to act on his/her behalf and to make all health care decisions for him/her during their incapacity (incompetent to make medical decisions), in accordance with their prior instructions.

End of Life Care Every person should be able to fairly expect the following elements of care from physicians, health care institutions, and the community: the opportunity to discuss and plan for end-of-life care. the opportunity to discuss scenarios and treatment preferences with the physician and health care proxy, the chance for discussion with others, the chance to make a formal "living will" and proxy designation, and help with filing these documents

End of Life Care What happens when healthcare professionals have end-of-life conversations with patients? Researchers found: Patients who had end of life discussions have a DNR and preferred medical treatment that focused on relieving pain and discomfort over life-extending therapies End-of-life conversations were not associated with patients feeling “depressed,” “sad,” “terrified” or “worried.”

Important Care Points Honor the patient and family cultural beliefs and practices around end of life. Remember that “no code” does not mean “no care”. Keep the patient comfortable and as pain free as possible Attend to the patient’s physical and hygiene needs Explain to the patient / family what is happening and the dying process. Be sensitive and empathetic in approach Be available to listen to the patient / family and their concerns / needs Get help for the patient / family as needed (e.g. social services, chaplaincy, pain specialists, etc.)

References American Medical Association http://www.ama- assn.org/ama/pub/physician-resources/medical-ethics/about- ethics-group/ethics-resource-center/end-of-life-care/ama- statement-end-of-life-care.page? World Health Organization. Available at: http://www.who.int/hiv/pub/imai/primary_palliative/en Growthhouse.org; Stanford Faculty Development Center – Improving Care for the Dying http://www.growthhouse.org/stanford/modules.html