National Healthcare Decisions Day 2008: The Law, the Talk and the Care

1. National Healthcare Decisions Day 2008: The Law, the Talk and the Care Ira Byock, MD, Dartmouth-Hitchcock Medical Center Betsy Clark, PhD, ACSW, MPH, National Association of Social Workers (NASW) Bill Colby, Esq, Center for Practical Bioethics Moderated by: Nathan Kottkamp, Esq www.nationalhealthcaredecisionsday.org.

3. "I'm Dying, STAT, Call My .   .   . Lawyer?" Bill Colby, J.D. Senior Fellow, Law and Patient Rights Center for Practical Bioethics

4. Famous cardiologist Bernard Lown, in the early 1960s, with a DC cardioverter

5. The Medtronic pacemaker today

6. An early pacemaker (not all that implantable)

7. Early rumblings of the living will, summer of 1969

8. Nancy Cruzan, two days before her accident – January 1983

9. Nancy Cruzan, two years after her accident

10. Bill Colby’s power of attorney for healthcare Durable Power of Attorney for Healthcare Decisions I, _________________________, SS#_____________________, appoint the person(s) named below as my agent to make healthcare decisions for me when I cannot communicate what I want done. I want my agent to have the broadest power possible to make all healthcare decisions for me. If federal law provides broader power than state law, then I choose that federal law apply. I want my agent to have the power to make any decision she chooses, just as if I was making the decisions myself. My agent’s power certainly includes the power to accept or reject any medical treatments, including artificial nutrition and hydration. This broad power, in fact, extends to all areas – like reviewing records, or moving me home, to a nursing home, to a hospice house, or wherever she chooses. My agent can enter a DNR or Do-Not-Transfer or any similar kind of order for me, decide about organ donation, autopsy – all decisions. I intend this document as evidence beyond a reasonable doubt of my wishes: I have only one wish – that my agent is allowed to make any and all decisions for me. It does not matter if the medical team agrees with her. It does not matter if that team believes that she is making a decision that, in their view, is not in my best interest or not in accord with what someone believes is my previously-expressed view. I care only about her view. She gets to decide, period. Lastly, I prefer that no one seek to appoint a legal guardian for me for any reason. If such a proceeding somehow happens, I request that my agent be appointed my legal guardian. Agent’s Name______________________________ Phone________________________ Address_________________________________________________________________ First Alternate Agent Second Alternate Agent Name_______________________ Name________________________ Address_____________________ Address______________________ Phone_______________________ Phone_______________________ Signature_________________________________ Date__________________________ Witness#1________________________ Date_____ (Witness should not be related or Witness#2________________________ Date_____ financially connected to you). Notarization On this ___ day of __________, in the year of ____, personally appeared before me the person signing, known by me to be the person who completed this document and acknowledged it as his/her free act and deed. IN WITNESS WHEREOF, I have set my hand and affixed my official seal in the County of ___________, State of __________. Notary Public______________________________ Commission expires___________

11. Communicating with Individuals and Families About Advance Care Decision Planning Betsy Clark, Ph.D., ACSW, M.P.H.Betsy Clark, Ph.D., ACSW, M.P.H, Executive Director of National Association of Social Workers

12. “A person's dying is a unique, fluid process, a time of loss and transition, a loss to be worked through, an experience to be shared, not a symptom to be fixed or cured.” Best Practice Series / Innovative Practice in Social Work: Care at the End of Life, (SSWLHC, 2001).

13. Cultural Diversity • The diversity of the population in the U.S. is increasing, and with this diversity comes a variety of beliefs and practices related to dying and death. • Cultural diversity exists among both clients and healthcare providers. • Cultural groups are not homogeneous; divergent beliefs can exist among people of a similar cultural backgrounds. • The beliefs of care providers can influence practice and service delivery to individuals and their families affected end of life issues and the need for advance care planning.

14. CulturalAwareness and Competency • Individuals and families are influenced by their ethnicity, culture, values, religion as well as health-related beliefs, and economic situations. • Each cultural group has its own views about palliative and end of life practices and  these views need to be understood, as they affect individuals’ response to illness, loss, pain, dying, and death. • Social workers and other care providers should understand systems of oppression and how these systems affect client access to, and utilization of, palliative and end of life care.

15. Self Awareness and Sensitivity • Providers’ self-awareness of their own cultural identities is fundamental to practice as information about clients' cultural backgrounds and experiences.   • Providers can move from being aware of their own heritage to becoming aware of, sensitive to, and valuing the heritage of others.

16. Cultural Competence The process by which people and systems respond respectfully and effectively to others of all cultures, languages, classes, races, ethnic backgrounds, religions, and other diversity factors in a manner which recognizes, affirms, and values the worth of individuals, families, and communities and protects and preserves their dignity.

17. Culturally Competent Healthcare Providers • Culturally competent healthcare providers act to prevent and eliminate domination of, exploitation of, and discrimination against any person, group, or class on the basis of race, ethnicity, national origin, color, language, sex, sexual orientation, gender identity, age, marital status, political belief, religion, or mental or physical disability. Adapted from the NASW Standards of Cultural Competency

18. How Does Advance Care Planning (ACP) Help Clients: • Develops guidelines that determine and document a person’s goals and wishes. • Ensures that clinical care is provided according to an individual’s choices. • Decreases crisis decision making by anticipating emergencies. • Promotes understanding, reflection, and communication about values and preferences.

19. End of life decisions and planning: • Present a broad range of medical as well as psychosocial issues for survivors and care providers. • Cross ethical, religious, cultural, emotional, legal, and policy boundaries. • Involve individuals' deepest and most dearly held values, beliefs, and fears, and therefore need to be addressed with sensitivity and compassion.

20. Why is Advance Care Planning (ACP) Important? • ACP can avert some of the crises that often occur when someone becomes incapacitated, and family members are left to face decisions about healthcare. • ACP can be a gift to loved ones in times of crisis by documenting the wishes of the loved one who can no longer speak for themselves.

21. Strategies that Assist Clients and their Loved Ones with ACP • Offering support and information to family members and friends who may be unprepared to decide what their loved ones might want. • Explaining that clients may address decision making authority through advance planning. • Helping clients and family members understand that the decision making authority does not have to rest solely on one person, who may be overwhelmed with the weight of such decisions.

22. Hope and ACP Hope is often misunderstood by many professionals and a portion of the confusion is that people hope differently. While individuals have different ways of hoping, families also have well-established patterns of hoping. For many clients and families dealing with ACP, the concept of hope is an important aspect to have and hold on to. Hope is a way of thinking, feeling and acting. Hope includes the desirability of personal survival and the ability of the individual to exert a degree of influence on the surrounding world and on one’s own world. Professionals need to recognize its importance in coping with ACP and decision making.

23. Providers can Address Ethics, Values and Boundaries • healthcare providers involved in palliative and end of life care will be confronted with common and complex ethical considerations and legal issues. • Ethical dilemmas can bring together-- or separate--clients, family members, and care providers due to the beliefs, systems of care, laws, and complexities involved in the situation. • Individuals often struggle with competing personal beliefs, legal considerations, and choices brought about by advances in medical technology. • Care providers are challenged to be aware of their own beliefs and reactions in end of life situations, to maintain boundaries and offer the best care to the individual and family.

24. Transference and Counter Transference • A dying person's last days can be improved by the ability to transfer feelings and thoughts with the professional. • Both roles of transference (the flow of feeling from the client to the provider) and counter transference (the flow of feeling from the provider to the client) should be monitored by self-awareness, supervision, or consultation with colleagues. • Healthcare professionals and other relevant providers may be bereaved by the dying and death of a client and are vulnerable to professional grief and burnout. • A good support system is a necessity for professionals in end of life care, including family, friends, co-workers, and clergy who can help provide support.

25. What is Professional Grief Professional grief usually takes the form of hidden grief -- grief that is internalized and not openly expressed. There is no natural outlet for it, and the demands of work overshadow it. This lack of expression may result in cumulative grief, or what sometimes is referred to as bereavement overload. This can further lead to a legacy of vulnerability, burnout, or post-traumatic stress reaction. Hiding grief is not new to professionals. There has always been an expectation that professionals who work in high loss settings get used to dying and death. In fact, familiarity with death does not make it easier to accept loss or to manage professional grief more effectively.

26. When Healthcare Providers Assess or Communicate with Individuals and Families involved in Advance Care Decision Planning, it is important to consider: • Degree of cohesion with individual and loved ones (disengaged vs. engaged, separated vs. connected, enmeshed vs. fragmented). • Nature of communication with the client and / or family, given the cultural context. • Confidentiality and inclusiveness of family members, such as disclosing bad news, or care planning, and decision making. • Communicating client’s / family’s psychosocial needs to the interdisciplinary team.

27. Advance Directives & Advance Care Planning Turning Obligations into Clinical Opportunities Ira R. Byock, MD Director of Palliative Care

28. Mr. GB 73 yo Recently dx’d glioblastoma Underwent craniotomy this admission VF cardiac arrest 4 days post-op Unresponsive; intermittently agitated Medical Record: No Advance Directive on file No pre-op discussion of CPR preferences

29. Mr. DS 84 yo s/p AAA repair ~3 month prior ESRD on HD s/p recent STEMI Acute bacteremia Moderate dementia - longstanding Intermittent delirium Full CPR status 3 sons in conflict

30. The Context of Care

31. The Context of Care St. Paul Pioneer Press Dying Well: The miracle of death, Spring 2000

32. The Context of Care

33. Physicians and Advance Directives

34. What Advance Directives are… …and what they are not • Advance Directives are not • Prescriptions • Plans of care • DNR orders • CMO orders

35. Discussing Advance Directives with patients Why bother?

36. What Matters Most to People • Being a burden to family • Losing control • Suffering in pain Deidre Scherer collection

37. What Advance Directives are – and what they are not • Advance Directives are • A communication tool • An advocacy tool • A counseling tool

38. Advance Directives are • A communication tool • For assisting people in clarifying their values and preferences re: healthcare in serious, potentially life-limiting conditions • An advocacy tool • For helping patients project their caring for family into an uncertain future • A counseling tool • For supporting and guiding family members in making decisions in stressful situations

39. Discussing Advance Directives with patients Why bother?

40. “An individual receives a diagnosis, but illness happens to a family.”

41. Discussing Advance Directives with patients Why bother?

42. Before ADs are needed “Advance Care Planning”

43. “Either this is the wrong chart or – let’s just hope this is the wrong chart.” Facilitating Advance Care Planning & Advance Directives

44. Facilitating Advance Care Planning & Advance Directives • Normalize the process • Complete their own advance directives

45. Facilitating Advance Care Planning & Advance Directives • Normalize the process • “We do this with everyone.”

46. Facilitating Advance Care Planning & Advance Directives • Complete their own advance directives • “I have an advance directive – and so do the people in my family.”

47. Facilitating Advance Care Planning & Advance Directives If you became seriously ill or injured and could not speak for yourself, do you know what healthcare treatments you would or would not want? Ron Golec

48. Facilitating Advance Care Planning & Advance Directives Do other people know what your wishes are? Ron Golec

49. Discussing Advance Directives When They Are Needed Decision making in Serious Illness Bastienne Schmidt & Philippe Cheng

50. What Advance Directives are… …and what they are not • Advance Directives are not • Prescriptions • Plans of care • DNR orders • CMO orders