Preventive Ethics- The Foundation of Palliative Care

1. Preventive Ethics-The Foundation of Palliative Care Constance Dahlin, ANP, FAAN Clinical Director Palliative Care Service Massachusetts General Hospital Boston, MA

2. GWEN 43 yr old trainer. Married with 2 sons 7 and 9. Diagnosed with lung cancer and pemphigoid characteristics. Undergoes chemotherapy. Becomes weaker with shortness of breath. Still able to parent her boys. Develops acute respiratory distress and admitted to ICU with poor prognosis. Offered a tracheotomy. Recovers and becomes active for next 6 months. Goes to son’s baseball games. Declines but stays at home.

3. MAURA 62 yr old with 5 year history of ALS. Married 40 years with 3 children and 2 grandchildren. Experienced weakness and diagnosed with ALS after 1 year. For 3 years, experienced continued weakness. Finally becomes more short of breath and develops more difficulty swallowing. Begins to use oxygen at night and then moves to BiPap. Stable for 3 years. Chooses to have no further treatment. Declines and is at home.

4. LEANNE 49 yr old social worker with abdominal pain. Diagnosed with stage IV pancreatic cancer. Underwent chemotherapy although extent of disease discussed. Disease progression and clinical trial discussed with goal of therapy as trying to prevent future progression but not cure. After 1 month, further progression and poor prognosis. Decision for stent placement and medication management.

5. DIFFERENCES IN CARE • Values • Preferences • Beliefs • Goals of Care • Resources • Continuity of Care

6. What is a good death? A sense of control - site, further treatments, who is in attendance A sense of dignity and privacy - respect for decisions A sense of relief from pain and symptoms - state of the art pain and symptom control Robert Smith BMJ 2000

7. What is a good death? A sense of information for decisions - informing of realistic choices A sense of finishing business - life review, closure with family and friends An ability to die without unnecessary prolongation - respect for choices about advanced care issues Robert Smith BMJ 2000

8. Death in the United States • 75% of patients die in hospital or extended care facilities • 25% of patients die in home • 1995 results from SUPPORT (Study to Understand Patient Preferences in Older Adults Randomized Trial) show patient preferences not acknowledged

9. What constitutesPalliative Care? • Appropriate care when curative treatment and life sustaining treatment are no longer appropriate nor desired. • Aggressive, well-planned symptom control • Anticipation and planning for future symptoms to prevent suffering • Protection from burdensome interventions • Minimization of suffering • Maximization of patient’s dignity and control • Psychosocial support for patient and family

10. Challenges for Health Care Systems The use of life prolonging therapies even when outcome is poor, particularly in academic settings. Should “everything be offered” because it is available. What does available mean? Dying is expensive as people are dying in hospitals and long term care facilities. This issue of rationed health care has emerged. What is prolonging of life versus prolonging of death. Regional and setting variation in acceptance of death and dying.

11. Challenges for Patients Often patient wishes are unknown or not honored. May feel pressured to receive therapies they don’t want. Don’t know they can decline treatment even if they have sought assistance from the ER. Don’t know about home services or have poor coverage for end of life care.

12. Challenges for Providers • Little Education and Training in End of Life Care • May be discouraged to stop futile treatments or encouraged to use life sustaining therapies whether appropriate or not • Fear of litigation • Not enough time to get to know patients and families • Little knowledge on discussions of wishes, preferences, and goals of care • No documentation of important conversations

13. What is preventive ethics? • A proactive process to keep ethical conflicts from arising- activities performed by an individual or group on behalf of a health care organization to identify, prioritize and address systemic ethics issues. • Specifically proactive practice and policies in place to prevent disagreement and conflict in care, but allows rapid response to when it does occur • Professional integrity for the limits of treatment

14. Preventive Ethics • Not accept the status quo of not discussing or waiting for something to happen • Proactive and look ahead at issues. • Prevent the occurrence of conflicts • Early identification of issues • Predict scenarios • Knowledge of the natural history of many illnesses

15. Preventive Ethics • Looks at differences • Requires reflection of institutional, factors that influence care- • Often a difference between withdrawal of care versus not offering futile therapies • Not offering harmful therapies • Absence of ethical conflict does not indicate good care

16. Clinical Challenges • Prolongation of life: balancing benefits and burdens • Withholding/withdrawing medical interventions • DNR • Medical futility • Assisted suicide • Euthanasia • Principle of double effect - “Last Dose Syndrome”

17. Return to Case Studies All the cases have issues to attend to in proactive fashion • Gwen- Foreshadowing of a difficult death. Conversation about end of life care difficult. Sister a nurse. Husband wrought with sadness. • Maura- Foreshadowing of further decline. Respiratory difficulty • Matt – Foreshadowing that he would want to fight to the end

18. Preventive Ethics and Palliative Care • Ethical dilemmas on macro and micro levels emerge daily in palliative care • Changes in social/family systems have added to complexity of end-of-life/palliative care • Landmark cases influence legal/ethical history • Palliative care clinicians help patients make fully informed decisions

19. Examples of where preventive ethics impact end of life • Lack of discussion about end of life preferences and values Example Barbara • Difficult patients are denied follow-up appts, medications even in end of life Example Wally • Process to address portable DNR outside the hospital are lacking Example Policies addressing in-house DNR/DNI only • Ethics for conflicts only

20. How does preventive ethics occur in palliative care? • Inherent in routine palliative care discussions with patients with life limiting illnesses to elicit their values, preferences, concerns that form decision making for end of life care • Document these statements in medical record • Advocate for patients when they are in the hospital • What are the values and preferences of the patient that will form decisions?

21. Why is it important? • Many end of life decisions made in crisis. • If we could present some scenarios for patients, it could take out the crisis mentality.

22. Promoting preventive ethics and palliative care within the institution • Identify and address personal and professional obstacles to appropriate clinical management of patients at end-stage disease.

23. Discussions with Gwen, Maura and Matt How to discuss specific or hypothetical? When do we discuss First visit or along the way – Context based on relationship

24. Discernment of: • Values • Preferences • Beliefs • Goals of Care • Resources • Continuity of Care

25. Communication Essential • There is time along the disease trajectory to help guide the family • This helps patients and families at choice point times • Allows for dying as well as possible

26. Barriers to Communication • Social – personality and communication style • Cultural • Professional – health care role • Organizational • Regulatory

27. Types of communication • Giving Bad News • Transitioning to Palliative Care • Goals of Care/Advanced Care Planning • Prognosis Discussions • Existential questions - Why • Discipline specific questions

28. Why communication at EOL difficult • Emotional • Makes patient and family sad, makes them feel helpless and out of control • Makes clinician sad, invokes guilt and sense of failure • Time Sensitive with Rapid Change of Status • stress of situation • disease progression • window of opportunity

29. Communication • Ask how much the patient/family want to know • If pt doesn’t want to know, who do they want to know • Who will make decisions • Has patient discussed their values, preferences, and beliefs

30. Differences in Communication Style • Lack of literature for non-physicians • Sometimes nurses and other providers more tentative than physicians • Concerns about role in such discussions and scope of practice issues

31. Differences in Information Gathering • Nurses and other providers gather at bedside • Information through procedures • Not a formal interview

32. FIFE Model EPERC- Fast Fact # 17 F = Feelings related to fears and concerns of illness (Concerned, fears, feelings) I = Ideas and explanations of the cause (Ideas about what, think might be going on, what it means) F= Functioning on daily life (Affecting your life, change in routine) E= Expectations (Expect, hope, expectation)

33. Values • What does the person hold dear in life? • What is their quality of life • What gives them strength?

34. Communication Major strategy 1. Open end questions are essential 2. Lack of agenda can help open discussion 3. Keeping discussion open by owning thoughts to make it less threatening • I am curious • I am worried • I wonder

35. Preferences for Care • Does the patient want life sustaining or life prolonging treatment • Return to ED • If ED for specific reason, transfer to ICU • Where does patient want care? • Hospital • Intensive care • Home • Blend

36. Beliefs • Meaning of Life • Religious • Spiritual • The afterlife

37. Challenges to Discussions • Poor communication about possible outcomes • Poor prognostification • No clear response to DNR orders • What does DNR/DNI mean? • What does comfort care mean?

38. If DNR/DNI orders appropriate • Who decides this? • Who writes the order? • What does the order say? • What does comfort care mean? What does allow natural death mean? • Who should receive resuscitation? • Who should move from the ED to the ICU? • What is an arrest?

39. Institutional Policies • Encourage a forum for these discussions • Have a palliative care team to assist • Provide guidelines to response to urgent situations

40. Opening Questions • How are things going for you/your family? • How do you think you/your loved one is doing? • What do you understand about your condition? • What has the doctor told you/your family? • What are you hoping from this treatment/admission? • How can we support/help you? • Help me understand.. • I am worried…

41. Goal of preventive ethics • Produce measurable and sustainable improvements • Reduce systems level obstacles to ethics • Promote behavior in clinicians

42. Goal of palliative care • Promote access to care • Promote respectful death • Anticipate issues

43. Goal of Preventive Ethics and Palliative Care • Attaining information about goals and hope for care • Discerning if information shared with surrogate decision maker who is hopefully HCP • Discussing the future and possible critical transitions for care

44. Perhaps Preventive Ethics • Can expand access to palliative care as it has less stigma than palliative care • Serve as the basis for palliative care consultation since the following forms the foundation of the evaluation process • Values • Preferences • Beliefs • Goals of Care • Resources • Continuity of Care

45. GWEN 43 yr old trainer with lung cancer Forgoes hospice as she felt it implied giving in to the disease and she wanted her sons to remember she fought hard to stay alive and never gave up Caregivers respected her wishes and values Died at home with home health care

46. MAURA 62 yr old with ALS. Has hospice for 6 months. Then decides her quality of life is poor and decides to stop her BiPap. Hospice nurse and palliative care nurse practitioner utilize protocol for withdrawal of life sustaining technology.

47. LEANNE 49 year old social worker Is Full Code as she has still wanted everything done. Nurses question this, but we state her those are her wishes. One day after stent, she further declines. Family supports husband to change code status and bring children in. She dies the next day.

48. References –Preventive Ethics Burns J, Edwards J, Johnson J, Cassem N, & Truog R. Do-Not-Resuscitate order after 25 years. Crit Care Med 2003. 31:1543-1550. Forrow L, Arnold R, Parker L. Preventive Ethics: Expanding the Horizons of Clinical Ethics 1993. 4:4;287-293. Foglia MB. Building a Preventive Ethics Program. National Center for Ethics in Health Care. Veteran’s Hospital Administration. 2009. McCullough L. Practicing Preventive Ethics- the keys to avoiding ethical conflicts in health care. (Special Report: Ethical Debates/Ethical Breaches) Physician Executive. March 1, 2005. McCullough L. Ethical Challenges of End of Life Decision Making for Physicians, Patients, and their Families. Presentation. Houston Texas. Levine-Ariff J. Preventive Ethics: The Development of Policies to Guide Decision-making. AACN Clin Issues Crit Care Nurses 1990. 1:1; 169-177. Sugarman J. Commentary: A call for preventive ethics. BM. 1990. 338,pb753.

49. References Texts Beauchamp T, Childress J. Principles of Biomedical Ethics, 5th edition. “Moral Theories,” 2001. Oxford University Press. p 337-381.

50. REFERENCES - Communication Dunne K. Effective communication in palliative care. Nursing Standard. 2005;20(13):57-64 AACN. Peaceful Death Competencies. 2005 SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill patients. JAMA 1995;274:1591–1598. City of Hope National Medical Center and the American Association of Nursing. ­End-­of-­Life Nursing Education Consortium (ELNEC) (Supported by a grant from the National Cancer Institute.) Duarte, CA: Authors. Heaven C, Maguire P. Communication issues. In: ­Lloyd-­Williams M, Ed. Psychosocial Issues in Palliative Care. Oxford: Oxford University Press, 2003:13–34