Opportunities to improve end of life care in the long term care setting

1. Opportunities to improve end of life care in the long term care setting David Casarett MD MA Division of Geriatrics Center for Bioethics

2. Mr. Palmer: • Mr. Palmer is an 84 year old man with advanced dementia (MMSE score=10), congestive heart failure, diabetes, and prostate cancer. • He currently lives in a skilled care facility, where he is dependent on others for most activities of daily living. • He has had 2 hospitalizations in the past 6 months; one for a heart failure exacerbation and one for presumed aspiration pneumonia. • He has lost 10 lbs. in the past 6 months and is only eating 50% of meals, despite an intensive feeding program.

3. Cure of disease Avoidance of premature death Maintenance or improvement in function Prolongation of life Relief of suffering Quality of life Staying in control A good death Support for families and loved ones What should the goals for care be?

4. Mr. Palmer: family meeting • A family meeting was held, which included Mr. Palmer’s daughter, the interdisciplinary team and the attending physician. The meeting was held in a room that could accommodate Mr. Palmer as well, so he could be present.

5. Mr. Palmer: family meeting • The group discussed: • Mr. Palmer’s goals • Mr. Palmer’s preferences as far as they could be determined • Mr. Palmer’s daughter’s wishes based on what she knew of her father and his goals • The risks and potential benefits of a feeding tube • They decide the primary goal should be to focus on palliative (“comfort”) care.

6. What now?Defining and implementing a comfort care plan

7. Comfort care… …Means doing more, not doing less • Requires a care plan: • Problem list • Desired outcomes • Interventions • Who is responsible • Reassessment and reevaluation

8. Outline • Standards of end of life care • 6 domains • How well are we doing? • What we should be doing • Translating standards into practice: the role for hospice

9. A “good death” • Isn’t perfect • Is almost impossible to define • Looks different for different people

10. Mr. Palmer: • An 84 year old man with advanced dementia (MMSE score=10), congestive heart failure, diabetes, and prostate cancer. • Dependent on others for most activities of daily living. • 2 hospitalizations in the past 6 months; one for a heart failure exacerbation and one for presumed aspiration pneumonia. • 10 lb. weight loss in the past 6 months and eating 50% of meals, despite an intensive feeding program.

11. Desirable outcomes:NHPCO Pathways • Safe and comfortable dying experience for the resident • Self-determined life closure • Effective grieving for family and staff

12. Outcomes I • Safe and comfortable dying • The patient’s spiritual and psychological well-being • Continuity of care across providers and care settings • The patient’s physical comfort

13. Outcomes II • Self-determined life closure • Information and control over treatment

14. Outcomes III • Effective grieving • Family and staff adjustment after death • Family psychological, spiritual, and social well-being

15. Outcomes at the Last Place of CareJAMA, January 7, 2004

16. Outcomes at the Last Place of Care

19. Improving end-of-life care in nursing homes: What does high quality care look like?

20. The patient’s spiritual and psychological well-being • Treatment of distress: • Depression • Anxiety • Confusion • Spiritual/psychological • Peacefulness • Sense of community • Reconciliation with friends/family

21. Depression, anxiety, agitation: general principles • Resident-centered care • Avoidance of physical restraints • For agitation, neuroleptics preferred over benzodiazepines

22. Spiritual/psychological support • For NH population in which dementia is common, support is often more important for: • Family • Staff • Interdisciplinary support • Counseling (social work) • Chaplain • Clinical information, teaching (Nursing)

23. Information and control over treatment • Culturally appropriate understanding of treatment options • Culturally appropriate understanding of prognosis and illness trajectory • Treatment consistent with preferences • Site of death consistent with patients’ and families’ goals

24. Information/control: General principles • Frequent (re)assessment of resident/family • Goals for care • Preferences for treatment • Treatment plan should accurately reflect resident preferences • Directly (if known) • Indirectly (family’s substituted judgment)

25. Plan of comfort care may result in: • Weight loss (without placement of a feeding tube) • Fevers that are not evaluated (but which can be treated symptomatically with acetaminophen) • Pressure ulcers that are not debrided or treated with uncomfortable dressing changes

26. Family psychological, spiritual, and social well-being • Family’s acceptance of death • Reconciliation • Provisions for family members and children

27. Continuity of care across providers and care settings • Continuity of information • Continuity of treatment • Continuity of health care providers

28. Continuity: General principles • Seamless transitions from NH to hospital and back • General orders (“comfort care”) • Specific treatment orders • Advance directives, orders honored across settings (POLST) • Changes clearly justified and documented

29. Family adjustment after death • Adjustment • Contribution of grief support (formal/informal) • Guilt/acceptance

30. A problem? The staff’s perspective • Staff develop close, long-term relationships with residents • One survey of long term care staff • Almost all had experienced the death of a resident in the past 6 months • 72% had at least one symptom they attributed to the resident’s death • Depressed mood • Crying • Anxiety • Insomnia • Loss of appetite

31. The patient’s physical comfort • Pain • Nausea • Pruritis • Constipation • Dyspnea • Thirst • Dry mouth • …

32. Physical comfort: general principles • Primary goals are: • Comfort that is acceptable • Alertness that is acceptable • No general rules about: • Maximum opioid dose • “Off limits” medications • Balance of sedation and comfort must be individualized

33. Goals of comfort care • The patient’s spiritual and psychological well-being • Family psychological, spiritual, and social well-being • Information and control over treatment • Continuity of care across providers and care settings • Family and staff adjustment after death • The patient’s physical comfort

34. Plan of care options • Comfort care provided by NH staff • Comfort care provided by hospice • Hospice care provided by certified NH hospice provider • Hospice care provided by community hospice

35. Comfort care provided by NH • Advantages: • Simple • Easy to implement • Facilitates quick changes to care plan • Disadvantages: • NHs vary widely in training, policies, and staff support • Requires staff to shift to a very different skill set, and set of treatment goals

36. Hospice Concept • Patient has a terminal illness • Patient care outcomes are focused on providing “comfort” rather than “cure” • “Home” is the primary setting of choice for delivery of care • Patient and family is the unit of care • Hospice is responsible for the professional/financial management of care

37. Not limited to specific diseases Life expectancy of 6 months, if the disease runs its normal course Patient can live beyond 6 months and receive hospice care Patient not required to have a DNR order Hospice eligibility

38. Identifying Appropriate Residents • An irreversible decline or a decline unresponsive to treatment? • Responsible decision-maker indicated a desire for comfort, rather than curative care? • Diagnosis of a terminal or life-limiting illness? • Would you be surprised if the resident died within the next 6 months?

39. “In house” Advantages: Easier referrals Avoids many financial barriers of hospice referral Disadvantages Puts burden of training on hospice Contracted/community Advantages: Skills, training already exist Flexibility to choose contracting hospice Disadvantages: Barriers of payment Possibility of discontinuity of care with shared care Hospice: Internal or external?

40. Hospice Services: Internal/external • On-call availability 24 hours a day • Volunteers to support the patient and family • Bereavement support for a minimum of one year after the death of the patient • Medications, supplies, durable medical equipment related to the terminal illness • Any other service or supply specified in the plan of care, if the items or service are covered under the Medicare program (lab, x-ray, ambulance, etc.)

41. The Hospice Interdisciplinary Team Volunteer Coordinator Occupational Therapist Pharmacist Physician Social Worker Patient & Family Nurse Dietician Nursing Aide Chaplain Ancillary Services Bereavement Counselor

42. Hospice-NH Partnership  Expertise of the nursing facility in long-term care Expertise of hospice in end-of-life care  Optimal experience for dying residents and their family members

43. Coordinated plan of care • Reflect hospice philosophy. • Common problem list. • Designate responsible provider. • Designate responsible discipline. • Establish when it will be done. • Palliative care goals. • Change and update to meet the resident’s needs.

44. Supporting documentation • Physician terminal prognosis. • Advance directives. • Hospice consent form: Resident elects to receive palliative care. • Hospice team charting on quality indicators.

45. Informed consent: Is hospice an appropriate alternative? • Mr. Palmer is an 84 year old man with advanced dementia (MMSE score=10), congestive heart failure, diabetes, and prostate cancer. • He says his goals for care are: • To stay as comfortable as possible • To avoid being a burden to family • To stay at the nursing home and avoid hospitalization

46. Hospice effectiveness in nursing homes • Moderate quality data (case-control studies) • Main findings: • Improved pain assessment and management • Improved family satisfaction • Lower rates of restraint use (Sources: Miller 2002; Teno 2004; Miller 2003) • Longer lengths of stay associated with better outcomes

47. Need for hospice in nursing homes? • Yes • Compared to community-dwelling hospice patients, similar needs for: • Pain management • Symptom management • Education/teaching • Counseling • Unique needs: • Supervision of patient • Communication/contact Casarett (2001)

48. Assistant Secretary for Planning and Evaluation (ASPE), 2000 • Hospice residents are less likely to be hospitalized in the last 30 days of life (12.5% vs 41.3%) and last 90 days (24.5% vs 53%). • Hospice patients received superior pain assessments compared to those who did not receive hospice.

49. Results of ASPE Study (cont.) • Hospice patients had lower rates of physical restraint use, parenteral/intravenous feeding, or feeding tubes in place. • When hospice is working in a nursing facility, there is a beneficial spillover effect to non-hospice residents.

50. When should residents enroll in hospice? Probably sooner… • Short lengths of stay: • NHPCO data: median 26 days • 33% < 1 week • 10% <1 day • Better outcomes in patients with longer stays: • Pain management • Provision of services • Access to intensive continuous care • Bereavement outcomes