1. HOSPICE: OPTIMIZING PALLIATIVE CARE FOR PATIENTS WITH ESRD Judith A. Skretny, M.A. The Center for Hospice & Palliative Care Buffalo, New York

2. We have been challenged by the RWJF ESRD Workgroup

3. The Challenge Collaboration Education New and Innovative Models of Care

4. What is Hospice? Is it similar to or different from Palliative Care?

5. Hospice A Philosophy A Program A Facility A Benefit

6. Hospice Philosophy Palliative care for terminally ill patients and their families Control of distressing physical symptoms, psychological and spiritual support, and bereavement care Interdisciplinary team of professionals and volunteers

7. Primary Hospice Services Physical symptom control-pain, nausea, dyspnea, etc. HHA services-bathing, dressing, feeding Psychosocial counseling-patient and family Spiritual support-patient and family Completion of advance directives, wills, funeral planning Volunteers Bereavement services

8. The Interdisciplinary Team Hospice medical director Skilled nursing Social work Pastoral care Home health aides Volunteers Bereavement programs

9. Where Can Hospice Services Can Be Received? Home Hospital Nursing Home In-Patient Units

10. The Hospice Benefit Includes: All drugs related to terminal illness All durable medical equipment Therapies: OT, PT, music, massage, dietary Other services as approved in plan of care: radiation, chemoRx, TPN, Tx, hydration, surgery Hospice receives approx. $106/day to provide these services

11. Eligibility for Hospice Care MD certified prognosis <6 mos. If disease pursues its usual course Any terminal diagnosis is appropriate Treatment goals are palliative rather than “curative” No therapy excluded pro forma No DNR required

12. Medicare Hospice Benefit Elect Hospice benefit for terminal illness, sign off Medicare A (hospital) PMD may remain primary, bills Part B Benefit periods/90/90/60….days Patient recertified as hospice eligible at beginning of each benefit period … unlimited recertifications Patient may revoke at any time

13. Myths: Hospice doesn ’ t “ admit ” patients who Don’t have cancer Don’t have a DNR Are receiving tube feedings or TPN or IVs Are receiving chemotherapy or radiation therapy Need palliative surgery Don’t have a primary caregiver

14. Unfortunate Reality: Patients with ESRD who continue to receive dialysis cannot access their hospice benefit.

15. Hospice Interdisiciplinary, compassionate, competent end-of-life care that aims to relieve suffering and promote QOL for patients and their families

16. Palliative Care and Hospice A hospice program provides palliative care and supportive services to terminally ill patients, their families and significant others throughout the course of the illness and into bereavement.

17. Hospice is the pre-eminent practitioner of palliative care

18. HOSPICE = PALLIATIVE CARE PALLIATIVE CARE > HOSPICE

19. Palliative Care No specific therapy is excluded from consideration. The test of palliative treatment lies in the agreement…that the expected outcome is relief from distressing symptoms, easing of pain, and improvement in quality of life. The decision to intervene is based on the treatment’s ability to meet the stated goals, rather than its effect on the underlying disease.

20. Barriers to Hospice Referrals: Death Denying Society – “giving up”, “hope” Medicine is a death defying profession Lack of training/information Difficulty re: prognostication Belief that Hospice is for the last days of life

21. Opportunities for Collaboration Hospices and Dialysis Units are Natural Partners in Providing: End-of-life education for staff, patients, families Advance care planning seminars for patients and families Seminars for staff, patients and families on anticipatory grief, spirituality

22. Hospices can assist dialysis units by providing: Training in having “difficult” conversations Support groups for staff of dialysis units Information on how to discuss Hospice as part of care planning Direction on developing bereavement services

23. Hospices can assist the medical community by providing: Rotation opportunities for nephrologists Medical student education University affiliated training for social workers, PT, OT, nurses, potential nephrology specialists

24. When the decision has been made to stop dialysis: Hospices and Dialysis Units can create a seamless referral process into Hospice that ensures the: Same physician will follow the patient The process of admission is simple Possible scenarios are anticipated and discussed i.e. dyspnea, seizures The patient and family are supported psychologically and spiritually Children in the family will receive support from child life specialists

25. Innovative Programs VNA & Hospice of Cooley-Dickinson Northampton, MA

26. Self-Determined Life Closure The Death of Ivan Ilyich – Tolstoy  “What tormented Ivan Ilyich most was the deception, the lie…that he was not dying but was simply ill, and that he only need keep quiet and undergo treatment and then something very good would result.”