1. http://www.growthhouse.org/stanford Module #6 END-OF-LIFE CARE: Module 6 Venues & Systems of Care

2. http://www.growthhouse.org/stanford Module #6 Work Rounds Vignette

3. http://www.growthhouse.org/stanford Module #6 Learning Objectives Describe venues for ELC Navigate across care systems to meet needs of patient and family Utilize strategies for making system changes within your own institution Incorporate this content into your clinical teaching

4. http://www.growthhouse.org/stanford Module #6 Outline Venues for ELC –Hospice –Acute care –Subacute care Enlisting resources Break Strategies for change System change within your institution Conclusion and goals

5. http://www.growthhouse.org/stanford Module #6 What exactly is hospice?

6. http://www.growthhouse.org/stanford Module #6 Myths of Hospice A place Only for people with cancer Only for old people Only for dying people Can help only when family members are able to provide care For people who don’t need a high level of care Only for people who can accept death Expensive Not covered by managed care For when there is no hope (Naierman, 1998)

7. http://www.growthhouse.org/stanford Module #6 Realities of Hospice 1-5 1.About 80% of hospice care takes place in the home 2.Hospices are increasingly serving people with the end-stages of chronic diseases 3.Hospices serve people of all ages 4.Hospice focuses as much on the grieving family as on the dying patients 5.Alternative locations or resources may be available

8. http://www.growthhouse.org/stanford Module #6 Realities of Hospice 6-8 6. Hospice is serious medicine, offering state-of- the-art palliative care 7. Hospices gently help people find their way at their own speed 8. Hospice can be far less expensive than other end-of-life care. Most people who use hospice are over 65 and entitled to the Medicare Hospice Benefit, which covers virtually all hospice services

9. http://www.growthhouse.org/stanford Module #6 Realities of Hospice 9-10 9. MCO’s are not required to include hospice coverage, but Medicare beneficiaries can use their Medicare Hospice Benefit any time, anywhere they choose. Those under 65 are confined to the MCO’s services, but are likely to gain access to hospice care upon inquiry 10. Hospice helps families see how much can be shared at the end of life through personal and spiritual connections; many family members look back on their hospice experience thankful that everything possible was done toward a peaceful death Naierman, 1998

10. http://www.growthhouse.org/stanford Module #6 The Modern Hospice Movement In the 1950s, as medical technology developed, most people died in hospitals. The medical profession increasingly saw death as a failure. Physical pain associated with terminal illness was not a target of treatment. Dame Cicely Saunders, MD, founded St. Christopher’s Hospice in London in the 1960s, in an effort to discover practical solutions to alleviating human suffering. She introduced hospice in the U.S. in a lecture at Yale in 1963. This contact set off a chain of events which resulted in the development of hospice care as we know it today.

11. http://www.growthhouse.org/stanford Module #6 Hospice is... (Not necessarily) a place A philosophy of care A structure for care

12. http://www.growthhouse.org/stanford Module #6 Brainstorm What problems do you encounter in trying to refer patients to hospice?

13. http://www.growthhouse.org/stanford Module #6 Comparing Hospice and Standard Home Care HospiceStandard Home Care Comprehensive, total careTask-oriented care Medications related to terminal illness covered Medications not covered Staff on call 24 hoursScheduled visits Support for familyPatient care only Bereavement supportNo bereavement support Physician care not covered (except Medical Director) Physician care not covered Prognosis-based eligibilityHome-bound, skilled care need

14. http://www.growthhouse.org/stanford Module #6 Medicare Hospice Eligibility Requirements Medical director and attending physician must attest to eligibility –Terminal illness –Prognosis < 6 months Patient accepts palliative care Hospices may also refuse to admit a patient if they have inadequate caregiver support at home

15. http://www.growthhouse.org/stanford Module #6 Brainstorm Returning to the vignette we started out with and using this information about hospice: What do you need to know about Mr. Young to see if hospice would meet his needs?

16. http://www.growthhouse.org/stanford Module #6 Medicare Hospice Financing Reimbursement on a per diem basis Emphasizes care at home Brief acute care and 5-day admits are possible Continuous care If nursing home care is needed, hospice can continue there

17. http://www.growthhouse.org/stanford Module #6 Steps to Making a Hospice Referral Identify whether patient meets eligibility standards Discuss goals of care with patient and family Negotiate about specific needs Activate referral mechanism

18. http://www.growthhouse.org/stanford Module #6 Hospice is Not Appropriate for Every Patient Too sick to leave the ICU If residential hospice is not available: –Homelessness –No caregiver available at home Not old enough for Medicare Needs more skilled care Doesn’t accept that he is dying

19. http://www.growthhouse.org/stanford Module #6 Precepts of Palliative Care Respecting patient goals, preferences, and choices Comprehensive caring Priority on comfort Utilizing the strengths of interdisciplinary resources Acknowledging and addressing caregiver concerns Building systems and mechanisms for support

20. http://www.growthhouse.org/stanford Module #6 Options for Dying in Acute Care Consultation teams Designated beds

21. http://www.growthhouse.org/stanford Module #6 What You Can Do if Patient is Imminently Dying Medical support –Inform discharge planner –Shift focus to quality of life –Review medications System support –Take opportunity to change mind-set to palliative-oriented acute care –Find other allies Social support –Involve the family –Involve the team in the family’s support

22. http://www.growthhouse.org/stanford Module #6 Extended Care Options Subacute unit Nursing home or skilled nursing facility (SNF) Rehabilitation unit Residential care facility

23. http://www.growthhouse.org/stanford Module #6 Subacute Unit Strengths Higher staffing ratio than in nursing home or SNF More complex care Many people see ELC as subacute level care Weaknesses Discharge planner may not be aware of such a unit in your community May see their focus as being on rehabilitation May not specialize in ELC

24. http://www.growthhouse.org/stanford Module #6 Nursing Home or Skilled Nursing Facility Strengths Most Medicare will follow patient for 2 months after acute admit Hospice could follow Recognized as appropriate for long-term care Some specialize in ELC Weaknesses Variation in quality Lower staffing ratio May not provide ELC May not be able to provide technologically complicated care Aversion of many people to nursing homes

25. http://www.growthhouse.org/stanford Module #6 Rehabilitation Strength Appropriate if there is a concrete rehabilitation goal Weakness If patient has no rehabilitation potential, can lead to sense of failure & discouragement, loss of hope

26. http://www.growthhouse.org/stanford Module #6 Residential Care Facilities (Assisted Living) Strengths Excellent option if facility has experience & willingness Number of facilities is growing Weaknesses Requires hospice waiver State laws may restrict availability of hospice in assisted living facilities Funds for care and caregiving must be available

27. http://www.growthhouse.org/stanford Module #6 Inpatient Hospice/Palliative Care Wards Hope for the future

28. http://www.growthhouse.org/stanford Module #6 Brainstorm If an extended care option were appropriate for Mr. Young, what further information would you need, to be able to match his needs to what is available?

29. http://www.growthhouse.org/stanford Module #6 What You Can Do Find out about extended care options in your community that specialize in ELC Talk with your home hospice people – who do they have contacts with in SNFs and nursing homes? Facilitate a family conference Enlist other resources

30. http://www.growthhouse.org/stanford Module #6 Enlisting Resources What resources might be available in your community that you are currently not utilizing as well as you might? Within your system Within the community

31. http://www.growthhouse.org/stanford Module #6 Continuum of System Change Macro-changes e.g., improve reimbursement system Local system change e.g., how your institution works Micro-changes e.g., different physician behaviors provide an incentive for others to change

32. http://www.growthhouse.org/stanford Module #6 Quality of ELC at the Local System Level Given the strengths and weaknesses of your institution, what kinds of changes would you like to see in this system, to improve care of the dying?

33. http://www.growthhouse.org/stanford Module #6 A Strategy for Change Assess priorities Assess feasibility Obtain buy-in

34. http://www.growthhouse.org/stanford Module #6 Key Ways to Obtain Buy-in Find allies Build networks Build on strength Avoid major barriers Appeal to the good

35. http://www.growthhouse.org/stanford Module #6 Measuring Change…a Powerful Tool in Effecting Change Itself Allows people to see what has been accomplished Creates tension to promote buy-in Facilitates adjustment to improve results

36. http://www.growthhouse.org/stanford Module #6 Three Ways to Measure Change Calculate numerator/denominator Collect pre/post data Benchmark against a standard

37. http://www.growthhouse.org/stanford Module #6 Promoting the Cycle of Change To keep the cycle of improvement going, how might we insure that positive change is recognized, and peoples’ efforts rewarded?

38. http://www.growthhouse.org/stanford Module #6 In Your Institution, Where Can You Make a Difference in ELC? Education Pain Non-pain symptoms Psychosocial aspects of care Spiritual aspects of care Decision making Ethics Communication Awards Venues of care Research ‘By next Tuesday’ Spontaneous changes

39. http://www.growthhouse.org/stanford Module #6 Returning to the vignette we started out with and using this information about hospice: Describe venues for ELC Navigate across care systems to meet needs of patient and family Utilize strategies for making system changes within your own institution Incorporate this content into your clinical teaching Learning Objectives