The End of Life, but Not the End of Care: Providing Quality Care for Patients with Terminal Illness

1. The End of Life, but Not the End of Care: Providing Quality Care for Patients with Terminal Illness Daniel Johnson, MD, FAAHPM Director, Life Quality Institute Chief, Palliative Care, Kaiser Permanente Center for Bioethics, University of Colorado

2. Mr. Stone • Admitted from a SNF with an CHF exacerbation • 3 hospitalizations in 2 months: “Get me out of here!” • Increasing frailty; severe fatigue, breathlessness • Patient : “This roller coaster is killing me” • Fears: “my breathing” and “my family can’t take this” • Hopes: “some more good days”, “help for Glenda” • Discharge plan: SNF for rehab A 84 y/o grandfather with advanced heart failure and multiple myeloma

3. SUPPORT Study • 38% spent at least 10 days in the ICU • Nearly half of patients received mechanical ventilation in the last 3 days before death • Half of patients had moderate to severe pain at least half of the time prior to death • 1/3 patients preferred no CPR, but <1/2 of their MDs accurately reported preferences • 31% families reported using all/ most of savings SUPPORT Investigators. JAMA, (1995)

4. Objectives • Explain terminology around common advance directives (e.g., DPOA, Living Will) • Define palliative care and explain its relationship to hospice • Recognize patients who may benefit from palliative care or hospice services • Describe strategies for discussing end-of-life care with progressively ill patients

5. Reshaping End-of-Life Care If you or a loved one was facing life- limiting, incurable illness, what would “good medical care” look like?

6. “Dying is fundamentally a personal experience, not a set of medical problems to be solved.” Ira Byock, MD

7. What Patients and Families Want • Pain and symptom control • To avoid inappropriate prolongation of the dying process • To achieve a sense of control • To relieve burden on family • To strengthen relationships with loved ones Singer et al, JAMA 1999 90% of adults prefer to be cared for in their own home if terminally ill

8. Death is Not Easily Predictable(slide courtesy of Joanne Lynn, MD Rand Corp.)

9. End-of-Life Resource Utilization: Personal Preferences or Hospital Access? • Retrospective cohort study of decedent Medicare claims from 77 USA’s “Top Hospitals” • Variations explained mostly byhospital bed availability • Note: > 30 % of Medicare payments cover the cost of care during the last year of life (majority = hospital $$) Wennberg et al. BMJ, 2004

10. If We Could Just Plan Better…

11. Common Advance Directives (Ads) • Living Will • A mechanism for capable adults to instruct their doctors regarding the initiation, continuation, withholding or withdrawal of certain life-sustaining medical treatments if terminally ill • Medical Durable Power of Attorney • A written document enabling a capable person to appoint an “agent” to make future medical decisions in the event of decisional incapacity • CPR Directive • A written document allowing patients to refuse CPR (allowing emergency services to know those wishes)

12. John, a 94 year old with CAD and COPD is brought to the ER after collapsing at a family picnic. He lethargic, confused and hypoxic and, if he is to survive, will soon require mechanical ventilation. John has no advance directives. While his daughter states that he would “want everything”, John’s wife disagrees and demands that he be kept comfortable without invasive intervention. A close family friend agrees with the wife and adds: “Just last week, John told me that he was ‘tired of fighting and ready to go’.”

13. In the absence of prior advance directives, which best describes how Colorado law dictates medical decision making in this case? • The wife’s decision takes precedent over the daughter’s • The daughter’s decision takes precedent over the wife’s • The medical team should make a decision based on best evidence available • None of the above

14. If No Medical Durable Power of Attorney… • In Colorado: process to identify a “proxy” rather than more traditional hierarchical system • Gather ‘interested parties’ who then define “proxy” • Most doctors routinely rely on family • Assumes family members available, agreeable • Relies that family knows what patient would want (which, studies show, is barely better than chance!)

15. Why Directives Won’t Solve End-of-Life Care Challenges • Living Wills often unhelpful: (Ditto P. Death Studies, 2006) • Vague instructions (e.g., no “heroic measures”) • Apply in only terminal illness, or “hopelessly ill” • Most decisions are complex, dynamic(Teno JM. JGIM, 1998) • Surrogate decisions inaccurate, challenging • CPR Directives often misunderstood • Assumptions behind ADs fundamentally flawed (Perkins HS. Annals Intern Med, 2007)

16. Birth of a New Specialty (2006):Hospice and Palliative Medicine Co-Sponsoring Boards: Family Medicine SurgeryPediatricsEmergency MedicineRadiology Internal Medicine Anesthesiology Obstetrics and Gynecology Physical Medicine/ Rehab Psychiatry and Neurology

17. Which one statement best describes the relationship between “palliative care” (PC) and “hospice”? • The terms are synonymous • PC is one type of hospice • Hospice is one type of PC • PC is delivered before hospice (i.e., hospice is for those closer to death) • PC is a philosophy of care. Hospice is a place of care.

18. To “Palliate” • Affording relief, without cure • To ease or relieve; to mitigate, alleviate. • From the Latin pallium, ‘to cloak’ • Our challenge: finding a cloak that “fits”

19. Palliative Care is.. • ..patient and family centered care that optimizes quality of life by anticipating, preventing, and treating suffering. • ..addresses physical, social, emotional, intellectual and spiritual needs and to facilitate patient autonomy, access to information, and choice. (CMS, 2008) Palliative care attends to “GAPS” in end-of-life care: • Identifying and understanding Goals of care • Supporting completion of Advance directives • Providing Psychosocial and spiritual support • Providing relief from distressing Symptoms

20. Hospice Care Palliative Care Support in Advanced Illness Traditional Approach “Comfort” Care “Curative” Care Curative or restorative goals Integrated Approach Palliative support Hospice Hospice: One Type of Palliative Care

21. VA Patient-Family Perceptions Palliative Care vs. Usual Care Casarett et al. JAGS, 2008

22. Our Words Gone Awry: Martha… • A wife of 50 years and mother of three • Advanced colon cancer, no more chemo • Admitted to the hospital with intractable nausea, vomiting and severe dehydration • Brief visit by the surgeon: “I’m sorry Martha – there is nothing more we can do. It’s time for hospice.” • Family outraged, patient devastated

23. Failures in Communication

24. If you were asked to talk with Martha about her cancer and next steps, where would you start? • Provide her with an overview of her illness, prognosis • Describe comfort-based community services • Explore what she understands about her illness • Elicit her hopes and fears • Explain the myths of hospice

25. When Facing Complex Communication.. Seek alignment Understand what they understand 10 Listening Explore their hopes, fears, and preferences Clarify and negotiate Information exchange Identify and introduce options

26. Communication Tips • Think “advance the conversation” • It is easier to ask before you tell: LISTEN • Learn what patient/family are ready to know • Use simple terms and attend to emotion • Don’t discuss options before exploring goals • Describe services before labeling • Don’t forget to share what you CAN provide

27. Starting the Conversation: Look for Triggers • Growing patient/ family needs (e.g., physical, emotional, practical) despite optimal care • Failed treatments, hospitalizations/ ER visits • “Invitations” from patient/family – examples: • “Isn’t there something more you can do for me?” • “I’m worried about my wife, Jean. I’m not sure she can keep going like this.” • “What a roller coaster. When will this get better?”

28. Words to Start the Conversation: Examples • “Carol, I can see you’re slower to bounce back this time – and I hear your disappointment. Will you share with me what the doctors told you about your illness during this last hospital stay?” • “John, I sense your frustration with the way things are going. I’d like to try and support you and Joan more fully. Will you help me to understand how this illness is impacting you and your family?”

29. Words to Introduce Palliative Care Services: Example “Betsy, I’m glad that you and George have each other – I can see this is not easy for either of you. We have a team in our hospital that specializes in supporting people dealing with serious illness. Would it be OK if I ask them to meet with you and your family?”

30. Patient Case: Betsy Betsy is a 55 y/o teacher admitted with pain, weakness and advanced breast CA • Prior independent, but now with frequent pain crises, functional decline; not eating • Chemotherapy cycle delayed due to frailty • Failing at home under daughter’s care • “Tired” and “scared”, “overwhelmed” • Palliative care consult requested

31. Which one is true about palliative care specialty services (PCSS) in 2008? • PCSS are cost neutral for most hospitals • About 2/3 of hospitals offer PCSS consultation • All patients with <1 yr to live should be referred to PCSS • MD’s can bill Medicare for non-hospice, PCSS • PCSS are generally limited to the hospital setting

32. Hospital-based Palliative Care • AHA Survey examining access to PC (2006) • Nationally, 53% hospitals (w/ > 50 beds) reported PC • Marked variation by state, Colorado grade: “B” • Now growing access in statewide hospitals • Exempla/Kaiser, U. of Colorado, VA, others • States with higher IPC penetration have: • Fewer Medicare hospital and ICU/CCU deaths • Fewer ICU/CCU days/admits during last 6 months • Lower overall Medicare spending/enrollee Goldsmith B et al. JPM, 2008

33. Randomized Control Trial of Inpatient Palliative Care at Kaiser Permanente • 512 patients, multi-site (N=250 Colorado) • Greater patient and family satisfaction • Improved pain control,  anxiety,  hope •  Completion of advance directives • NO difference in mortality • Decreased utilization and costs •  ICU admissions,  Readmission costs • Increased outpatient utilization, hospice LOS • Lower total costs for health plan and hospital Gade G et al. J Palliative Med, 2008

34. Patients Appropriate for Inpatient PC Consultation • Advanced illness: “Would you be surprised if this patient died in the next year?” • Unmet needs: remember “GAPS” • Team support re: complex decisions, conflict • Examples: • 47 y/o man w/ advanced colon CA, refractory pain • 65 y/o man w/ CHF, CKD; unsure re: HD, cor status • 87 y/o female with dementia, s/p NH fall, not eating

35. Betsy (continued) • Patient understanding: • “A year to live” (probable ~ 2-4 months (?)) • “This is tearing us apart…we need help” • Accepting of functional losses, “mad at God” • Patient and family goals: • Avoid further hospitalization; wants home • Relief for back pain and symptoms • Additional help and support for family • Minimize growing cost of medications

36. Which one of the following statements about hospice care in America is true? • Median length of stay in hospice is about 3 weeks • About 50% of those eligible actually use services • Hospice patients must elect DNR status to be eligible • About 75% of all hospice patients have cancer • Most hospice care is provided at inpatient hospice facilities, hospitals or nursing homes

37. Common Myths about Hospice Care… • Hospice is a place (you must leave home) • Medicare provides only 6 months of hospice care, so delay enrollment • Hospice means giving up hope. Hospice workers “help people to die” • Only for old cancer patients • Only for the very end - “it’s not time yet” • Once in hospice, you’re “trapped”

38. Medicare Hospice Benefit • Benefit covers: • Physician, nursing and social work services • Durable medical equipment and supplies • Medications for symptom control • Physical and occupational therapies • Respite and short hospital stay room and board • Bereavement services • Does NOT cover • Nursing home or inpatient facility room and board • Medical care unrelated to 10 hospice diagnosis

39. Community- or Home-based Palliative Care Services • For patients not eligible and/or wanting hospice • Often patients wanting further “curative” treatment • Not a Medicare benefit, but MDs/NPs can bill • Some insurances providing specific benefits • Kaiser Permanente Home-based Palliative Care • Hospice “bridging” programs – Colorado examples: • The Denver Hospice Pathways, HospiceCare of Boulder and Broomfield Counties, Pike’s Peak Hospice/PC • Other hospices developing new programs

40. Kaiser RCT of Home-based Palliative Care (HBPC) • 298 patients, multi-site randomized trial • Pts home-bound w/ cancer, COPD, CHF • Compared to usual care, PC group: •  Patient/family satisfaction at 60 days (p=0.001) • More likely to die at home (71% vs. 51%, p=0.001) • Decreased utilization and costs •  Hospital admissions (36% vs. 59%, P<0.001) •  ER visits (20% vs. 32%, P=0.01) • 33% total cost reduction Brumley R. et al. J Soc Work End Life Palliative Care, 2005

41. Betsy (continued) • Betsy chooses community-based palliative care services:“I’m not ready for hospice..” • Treatments reduce pain and nausea • SW and RN provide home-based support • Arrange for weekly community priest visits • Completes 1 round of chemo, elects hospice • Patient dies at home 9 weeks later • Comfortable without pain or breathlessness • “At peace” with God • Family appreciative of ongoing support

42. Questions and Discussion When hope is not pinned wriggling onto a shiny image or expectation, it sometimes floats forth and opens like one of those fluted Japanese blossoms, flimsy and spastic, bright and warm. This almost always seems to happen in community.