Improving end-of-life care in the long term care setting

1. Improving end-of-life care in the long term care setting David Casarett MD MA Division of Geriatrics Center for Bioethics University of Pennsylvania

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. Mr. Palmer • Long term care resident with several serious chronic illnesses • Is highly likely to experience events in the near future that will: • Compromise his health • Result in death • Result in a significant decline in function

4. Decisions that need to be made • Advance directive preferences • DNR • Transfer/hospitalization • Artificial Nutrition and Hydration

5. Usual approaches: • Medical decisions (without input) • “Your father is losing weight, we need to put a feeding tube in” • Leave decision up to resident/family: • “Your father is losing weight, what do you want us to do?” • Your father is very sick, do you want us to do everything to keep him alive?”

6. Hazards of the “usual approach” • Decisions that are not consistent with resident/family goals and preferences • Too much treatment • Too little treatment • Dissatisfaction with care • Unpleasant memories of the residents last months of life

7. An approach to decision-making discussions near the end of life • Identify the decision-maker • Assess prognosis • Define goals • Clarify preferences • Determine a plan • Reevaluate and update • One example: Decisions about ANH

8. Mr. Palmer: • An 84 year old man with advanced dementia (MMSE score=10), congestive heart failure, diabetes, and prostate cancer. • Currently lives in a skilled care facility, where he is dependent on others for most activities of daily living. • 2 hospitalizations in the past 6 months. • He has lost 10 lbs. in the past 6 months and is only eating 50% of meals. • Need for a decision about ANH (and other treatment options).

9. Decision-making: Who is the decision-maker? • Does the resident have adequate decision-making capacity? • Is there someone who can share decision-making? • How should a family member make decisions on the resident’s behalf?

10. Does this patient have decision-making capacity? • 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. • Can he make decisions about a feeding tube?

11. Decision-making capacity and competence • Competence • Decided by psychiatrist (usually) • Decision validated in court • Global implications • Decision-making capacity • Decided in clinical setting • Decided by clinical team • Decision-specific

12. Who can assess:Decision-making capacity? Competence? Capacity: Physicians Nurses Social workers Chaplains Speech therapists…… Competence: Psychiatrists

13. The theory of informed consent and decision-making capacity • Informed consent is justified by a patient’s right to autonomy, and our obligation to respect autonomy. • Informed consent requires: • Adequate disclosure of relevant information • Freedom from outside influences in making a decision • Decision-making capacity: Ability to learn and use information to make that decision • Respect autonomy by honoring the decision of a patient with capacity • Respect autonomy by turning to a surrogate when a patient lacks capacity

14. Congestive heart failure signs and symptoms: Elevated jugular venous pressure Dyspnea, orthopnea Rales S3 Peripheral edema Decision-making capacity signs and symptoms: ? The skills of assessment:CHF vs. capacity

15. Heart function requires: Clearing blood from venous circulation Delivery of blood to vital organs Assessed by physical examination Decision-making capacity requires: Understanding Appreciation Reasoning Ability to express a choice Assessed by interview Assessing capacity: pathophysiology

16. Decision-making capacity • Mr. Palmer is an 84 year old man with advanced dementia (MMSE score=10), congestive heart failure, diabetes, and prostate cancer. • He is able to understand that he has several serious illnesses and seems to appreciate that these illnesses may result in his death. • He understands the risks and potential benefits of a feeding tube. • But he cannot weigh those risks and potential benefits to reach a decision

17. Shared decision-making • More common in: • Older patients • Women • Married patients • African-American patients • Hispanic patients • Patients with cognitive impairment

18. Who is involved in end of life discussions? RN observation

19. Mr. Palmer: • Mr. Palmer’s daughter visits frequently, often bringing his grandchildren. She often participates in decisions and steps in to make decisions on his behalf when he is unable to (e.g. decisions about hospitalization)

20. When the resident can’t make decisions:Surrogate decision-making standards • Pure autonomy • What a patient wants • Uses advance directives • Substituted judgment • What a patient would have wanted • Uses previous statements • Best interests • What would be best for a patient

21. Mr. Palmer • 84 year old man with advanced dementia (MMSE score=10), congestive heart failure, diabetes, and prostate cancer. • Able to participate in decisions, but lacks full decision-making capacity. • Decisions about a feeding tube would be made jointly with daughter.

22. Prognosis: Challenges of recognizing the “end of life” • 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.

23. Why is prognosis information valuable? • Ability to make informed decisions about feeding tubes and other treatments • Guidance for practical decisions (financial) • Reconciliation/chance to say goodbye • Alleviation of stress that not knowing incurs • Reluctance of families to discuss plans when prognosis is unknown

24. Do patients want to discuss prognosis? • 1982 data 96 % of Americans wanted to know if they had cancer and 85% reported wanting to know if prognosis <1 year • Annas, G. NEJM 330:223-225 • 44% of bereaved family members of elderly deceased cited improved communication as very important. • Hanson, L. JAGS 1997;45:1339-44. • 85% of cancer patients stated that they wanted all information, good and bad. • Cassileth, B Ann Intern Med 1980; 92:832-836

25. How accurate are clinicians in prognostication?

26. Functional status: predictive value • COPD: New dependency in 2 ADLs in 2 years (Connors 1996) • Dementia: Inability to ambulate (Luchins, 1997) • ECOG/Karnofsky performance status (Mor 1984; Conill 1990; Sloan 2001)

27. Trajectories of functional decline CHF/COPD Cancer Dementia

28. “Checkered flags”-General • “Would I be surprised if this patient were to die in 6 months?” • Good idea • Widely used • Prognostic value unclear

29. Cancer • Cancer with metastatic disease: brain, pleura, pericardium, carcinomatous meningitis (Vigano, 2000) • Malignant bowel obstruction (Vigano, 2000) • Cancer with hypercalcemia (not multiple myeloma)(Vigano, 2000) • Symptoms: Anorexia, dyspnea, dysphagia (Maltoni, 1997)

30. Non-cancer diagnoses • Dementia: • Few/no meaningful words (Luchins, 1997) • Acute hospitalization (Morrison, 2000) • CHF: • Dyspnea at rest (Pfeffer, 1992) • Hyponatrema and renal insufficiency attributable to decreased cardiac output (Alla, 2000) • COPD: • Decline in FEV1>40cc/year OR FEV1<1.00 (Traver, 1979) • ICU admission for exacerbation (Seneff, 1995) • Loss of 2 ADLS/past year (Connors, 1996) • Chronic hypercapnea (Costello, 1997) • Cirrhosis with any renal insufficiency

31. Prognosis: Mr. Palmer • 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. • Not imminently dying, but limited prognosis (< 1 year)

32. Goals for care: what’s important? • Identity • Preferences • Locus of control • Values

33. Why discuss goals? • SUPPORT study, SUPPORT investigators 1995: • 47% of physicians knew when their patients wanted to avoid CPR • 40% of patient/family-physician pairs discussed CPR • Medicare resource use study, Teno 2002: • 20% of seriously ill Medicare patients said their care was too aggressive

34. The Interrelationshipof Goals • Historical sequencing • Multiple goals often apply simultaneously • Goals are often contradictory • Certain goals may take priority over others

35. Common goals (not mutually exclusive) • Safety • Comfort • Prolong life • Sense of closure • Strengthen interpersonal relationships • Improve/maintain function

36. Curative / Life-prolonging Therapy Presentation Death Relieve Suffering (Palliative Care) Relieve Suffering (Hospice)

37. Informed consent and goals for care • Informed consent requires: • Adequate information about: • The proposed treatment option • Its risks and potential benefits • Medically appropriate alternatives • Decision-making capacity • Absence of inappropriate influence: • Inducement • Coercion Hospice Palliative care

38. 6-Step Protocol to Negotiate Goals of Care… • Create the right setting • Determine what the patient and family know • Ask how much they want to know and discuss with you • Explore expectations and hopes • Suggest realistic goals • Respond empathetically

39. Mr. Palmer • An informal meeting was held with the Nurse Practitioner on the unit, Mr. Palmer, and his daughter. • The discussion focused on Mr. Palmer’s goals for care, negotiated between the NP, Mr. Palmer, and his daughter. • Central goals were: • To stay as comfortable as possible • To spend time with family • To maintain function and independence as much as possible

40. Defining preferences: general principles • Begin with goals • Focus on goals • Encourage consistency • With goals • With other preferences

41. Mr. Palmer: defining preferences for care • CPR • ICU admission • IV antibiotics • Hospice • Hospital transfer • Artificial Nutrition and Hydration

42. Preferences about Artificial Nutrition and Hydration (ANH) • Difficult because of: • Strong beliefs • Families • Staff • Regulatory pressures • Reimbursement incentives • Fears about “starving” residents

43. ANH: Medical background • “Feeding” administered by: • Gastrostomy/Jejunostomy tube • Placed through abdominal wall • Endoscopic/surgical (short hospital stay) • Parenteral line • Central line • Long-term peripheral line • Both require medical/surgical procedure for placement

44. To improve survival To promote better nutrition To promote weight gain/prevent weight loss To prevent aspiration pneumonia To promote wound healing To stay as comfortable as possible To spend time with family To maintain function and independence as much as possible Goals of ANH Mr. Palmer’s goals

45. Does ANH “work”? • Yes: • PVS (survival) • Selected rare GI conditions (survival) • Maybe: • Post-surgery (nutrition, wound healing) • Acute conditions (intensive care unit/burn unit) • Probably not • Dementia (any indication)

46. Will ANH help to achieve Mr. Palmer’s goals? • Goals • Increased comfort? • Time with family? • Maintain function and independence? • Probably not

47. Risks of ANH? (selected examples) • Procedural risks (surgery) • Self-removal (bleeding, peritonitis) • Nausea, bloating, abdominal pain, diarrhea • Aspiration pneumonia • In patients with dementia: Need for physical restraints: • Delirium • Pressure ulcers • Weakness/debility

48. History of ANH: Law and ethics • Surgical/technical procedure with uncertain benefits, significant risks • Decisions should be made by patients/families using the same approach that is applied to other medical decisions: • Risks/Burdens • Potential benefits • Patient preferences • Evidence in: • Past case law (Brophy, Quinlan, Cruzan) • Incorporation into the practice of clinical bioethics

49. ANH preferences • Decisions about ANH should be made in the same way, based on the same information, as decisions about other treatment are.

50. Goals and preferences: Cultural Differences • Who gets the information? • How to talk about information? • Who makes decisions? • Ask the patient • Consider a family meeting