Palliative Care: Communication. Edward W Martin MD MPH Home and Hospice Care of RI May 13, 2010

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1 Palliative Care: Communication Edward W Martin MD MPH Home and Hospice Care of RI May 13, 2010

2 End-of-Life Discussions You shouldn t have counseling at the end of life Senator Charles Grassley Aug

3 End-of-Life Discussions will have to stand in front of Obama s death panel so his bureaucrats can decide, based on a subjective judgement of their level of productivity in society whether they are worthy of health care

4

5 Sources of Misunderstanding Media Family and Friends Myth and Legend Understanding of probability

6 Cardiopulmonary Resuscitation on Television Diem SJ, Lantos JD, Tulsky JA, NEJM 1991;334: Patients don t understand CPR Overestimate success of CPR

7 The Influence of the Probability of Survival on Patient s Preferences Regarding CPR Murphy DJ, et al. NEJM 1994;330: % to 21% after learning probability of survival

8 DNR Only procedure that requires consent not to perform Critical Care MD more likely that general internist to suggest DNR Both more likely than cardiologist Misunderstanding of CPR benefits can lead to guilt and complicated bereavement

9 What are the chances? Complex discussions may be difficult to reduce to percentages Nuances such as level of function if illness is survived

10

11 Epidemiology and Prognosis of Coma in Daytime Television Drama Casarett D et al. BMJ. 2005;331:1537-9

12 Results Comas lasted median of 13 days 89 % full recovery 8% died 3% vegetative state Those that recovered, 86% had no deficits the day they regained conciousness

13 Mom: Comatose son was conscious Man thought to be in a vegetative state was fully conscious for 23 years. Could not respond because he was paralysed I screamed but there was nothing to hear. Story on TV news

14 Never mind Chicago Tribune Page 18 Therapist not patient was typing out thoughts

15 Cardiac Disease May not be understood to be a terminal illness 2/3 of pts in a heart failure clinic believed heart disease would not shorten their survival Discordance Between Patient-Predicted and Model-Predicted Life Expectancy Among Ambulatory Patients With Heart Failure JAMA. 2008;299(21):

16 Communicating With Seriously Ill Patients Better Words to Say Words matter Pantilat SZ. JAMA.2009;301:

17 Words that can have a negative impact There is nothing more to do Would you like us to do everything possible Stop the machines Withdrawal of Care

18 There is Nothing More to Do to cure the illness Not true Feels like abandonment Replace with I wish there were something we could do to cure your illness. Let s focus on what we can do to help you.

19 Would You Like Us to Do Everything Possible to help you achieve your goal, that would be helpful given the circumstances What is everything? DNR/DNAR How were you hoping we could help

20 Stop the Machines Focuses on what will not be done To respect his wishes we will stop the breathing machine and make his breathing comfortable If your heart stops we will let you die peacefully

21 Withdrawal of Care Care is never withdrawn although certain interventions may be. Withdrawal of mechanical ventilation and vasopressors and institution of comfort measures

22 Discussing Treatment Preferences With Patients Who Want Everything Quill,TE et al. Ann Intern Med 2009;151:345-9

23 Everything that might provide maximum relief of suffering, even if it might unintentionally shorten life Everything that has any possible potential to prolong life even a small amount, regardless of its effect on the patient s suffering

24 Fears Abandonment Physician may be less likely to provide care unrelated to resuscitation What worries you the most What are you hoping for

25 Misunderstanding What is your understanding of your condition/prognosis. What are your most important goals Tell me more about what you mean by everything

26 Faith Does your religion provide any guidance in these matters

27 Family How is your family handling this.

28 Developing a Plan Physician may suggest a plan of care based on patient s treatment philosophy and goals of care given the medical condition and prognosis. Consider a time limited trial when there is disagreement regarding plan.

29 Harm-Reduction Strategy When patient wants full care with no limits Ongoing negotiation can feel like badgering May still exercise clinical judgment ie stop CPR after one cycle. NOT a slow code. Support the care team.

30 Using Video Images of Dementia in Advance Care Planning Volandes AE et al. Arch Intern Med.2007;167:

31 I am going to describe to you an illness called advanced dementia, like advanced Alzheimer s dementia, that you may or may not be familiar with. Advanced dementia is an incurable disease of the brain in which one is not able to communicate with others.

32 People in advanced dementia are not able to move around or walk, get out of bed independently, eat by oneself, or communicate understandably with others. People with advanced dementia often have difficulty chewing or swallowing, and require assistance with feeding oneself.

33 Advanced dementia is an incurable disease and most commonly occurs after many years of Alzheimer s disease or as the result of strokes. People are not able to answer any questions or tell you about themselves.

34 Before Video 60 (50%) comfort care 22 (18.3%) chose limited care 25(20.8%) life-prolonging care 13 (10.8%) were unsure of their preferences. Educational Level Predicted Preferences

35

36 After Video 107 (89.2%) comfort care 10(8.3%) chose limited care none desired life-prolonging care 3 (2.5%) were unsure No difference in educational level and preferences Racial differences dissapppeared

37 The Challenge Providing adequate information to patients and families to allow them to make informed decisions

38 Use of Video to Facilitate End-of-Life Discussions With Patients With Cancer: A randomized Controlled Trial El-Jawahri A et al. J Clin Oncol.2009;28:

39 Results 50 participants 27 verbal/23 video Verbal Video Life-prolonging 25.9% none Basic care 51.9% 4.4% Comfort Care 22.2% 91.3% Uncertain none 4.4% 82.6% were comfortable watching video

40 Results Video group improved more on test of knowledge: questions about CPR survival, comfort care Most cancer patients that get CPR in the hospital survive and get to leave the hospital. True or False

41 Use of Video Increase in concurrence of surrogates with decision making Increased knowledge Decrease uncertainty Increase preference for comfort measures at end of life

42 Improving Do-Not-Resuscitate Discussions: A Framework for Physicians Taylor RM et al. J Support Oncol.2010;8:42-44

43 CPR Otherwise healthy patient: not dying, arrest is cause of death, CPR treats cause Dying patient: arrest is mechanism of death. CPR does not treat cause of death option of resuscitation suggests it is an intervention that makes sense DNR should be clearly recommended by physician for dying patient Otherwise burden placed on family to refuse an intervention that makes no sense

44 Expanding the paradigm of the physician s role in surrogate decision-making: An empirically derived framework White DB et al. Crit Care Med. 2010;38:743-50

45 ICU Physician-Family Conferences Audio tapes reviewed Physician roles categorized

46 Informative Role 7/63 Information provided on condition, prognosis, and treatment options No information solicited on patient s values No recommendation provided on life support

47 Facilitative Role 23/63 Information provided on condition, prognosis, and treatment options Actively guided surrogate through identification of patient s values and applicability to decision Refrained from providing a recomendation

48 Collaborative Role 32/63 Physician shared in deliberations and provided a recomendation

49 Directive Role 1/63 Physician took responsibility for and informed family of decision

50 20 times surrogate asked for a recommendation 10 times the physician refused

51 Informed Assent When discussing interventions that do not make clinical sense CPR in a dying patient, feeding tube in advanced dementia Provide recommendation Patient/surrogate can opt out

52 Palliative Care and Transitions 52

53 Palliative Care: The opportunity to improve transitions of care In Rhode Island, 20-30% of elderly patients are rehospitalized within 30 days of hospital discharge Of those re-hospitalized The majority have congestive heart failure at the first admission Other leading first admission diagnoses include pneumonia, asthma or COPD exacerbation, or acute myocardial infarction The vast majority of re-hospitalized patients still have not established advance directives The discussion to align clinical and patient goals of care can improve patient and family satisfaction, and improve the quality and quantity of care provided 53

54 Improving care transitions For patients with an advance directive in place, it is followed at least 80% of the time Improve caregiver satisfaction with care Improve caregiver and provider communication with a focus on patient care goals Do you discuss Advance Directives with all your patients? Do you re-visit it periodically? annually, with each significant change in condition or hospitalization? Would this discussion facilitate or prepare for a future discussion for goals of care, palliation or hospice? Maria J. Silveira, M.D., M.P.H., Scott Y.H. Kim, M.D., Ph.D., and Kenneth M. Langa, M.D., Ph.D.N Engl J Med 2010;362:

55 Improves safety through patient self-management Eric Coleman s Care Transition Intervention Model (patient coaching) patient activation through understanding their medications, conditions and when and how to reach out for help (before it turns into an emergency) ( four pillars ) CurrentCare enrollment Advance directives Improves care through better provider-provider communication Ultimate goal is to: Safe Transitions: a QPRI Project Reduce 30-day re-hospitalization rates Align care with patient goals Long-term goal aims at sustainability of proven interventions throughout RI, with cross setting provider collaboration 55

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