Talking the Talk: Having Those Difficult Discussions

1. Talking the Talk: Having Those Difficult Discussions With A Bit About Advance Directives Paul Rousseau, MD Medical University of South Carolina

2. Poor communication skills are associated with increased use of ineffectual treatments, higher rates of conflict, less adherence, and increased risk of malpractice

3. There are many acronyms for appropriate physician-patient communication, but one, CLASS, embodies the basics: • context • listening skills • acknowledgement of the patient’s and/or family’s emotions • strategy for clinical management • summary

4. But delivering difficult news can be challenging… when humans face danger, they are hardwired for a “flight or fight” response in a physician’s office or hospital room, the “flight or fight” response is to report hearing nothing after the first few words of difficult or bad news (i.e., “The biopsy showed cancer.”); patients and/or families cannot cognitively take in any more news

5. Basic “rules…” • Start with big picture goals before getting specific • Give the patient your complete and undivided attention • Do not use medical jargon or ambiguous innuendos • Use compassionate honesty Back A, Arnold R, Tulsky J. Mastering Communication with Seriously Ill Patients, Cambridge University Press 2009

6. Basics of family meeting communication… • Family meetings challenge us because: • 1) families bring the complexity of their own relationships and interactions to the meeting • 2) family members can each have their own interests • 3) family members have individual emotional needs • 4) family members may have different preferences for information or decision making • 5) family members may disagree about what the right course of treatment/action is

7. SPIKES • get the setting right • make sure you know the patient’s perspective • Invite the patient to tell you how he/she wants to receive information • share the knowledge • acknowledge the emotions and be empathic • share the strategy for the next steps

8. Roadmap to conducting a family conference… • Prepare the people and the message for the meeting • which family members should attend? all that want unless the patient is or was able to request certain family members not be involved in care decisions—do not marginalize anyone • which health care providers should attend? • health care providers should meet before the family meeting to deliver a clear and consistent message (see next slide) • one person should facilitate the meeting

9. Roadmap to conducting a family conference… • Prepare • review the chart • speak with attending physician(s) and consultants and unify message • know all family psychosocial information • clarify goals for the meeting • decide who from the medical team will be there • establish proper setting (not in a hallway!) • take a deep breath

10. Introduce all participants and purpose of the meeting, such as: • “I want to tell you how your father is doing medically. I also want to make sure that you understand what we are doing for him. We also want to learn from you his values and goals so we can make decisions that are ones he would make if he could speak to us now. Are there any other things you want to make sure we discuss?” • identify the legal or family-appointed decision maker

11. Obtain family understanding of medical condition • “Tell me your understanding of your father’s current medical condition.” • encourage everyone present to speak • for patients with a chronic condition, ask for a description of changes during the past weeks/months • if the patient is hospitalized, ask how things have changed from admission

12. Medical review • fire a warning shot if family not aware (i.e., tumor found on CT scan); you might say “The scan of your father’s abdomen did not show what we expected.” • summarize the big picture in a few sentences • avoid medical jargon (i.e., ventilator, CBC, catheter, imaging, MRI, CT, pulse ox, etc—use 8th grade language)

13. offer to answer questions • ask about the patient as a person (can do now or can also do at beginning of meeting—might be best at beginning, would help set goals later on)

14. Allow silence • Recognize and react to emotions • use an empathic statement such as “This must be so hard for you,” or “I can see this is very difficult for you.” • if family members angry you can say “I can see that you’re upset, this must be so difficult for you.”

15. Present options and set goals • prognosis • present goal-oriented options (i.e., prolong life, improve function, hospice, etc) • stress comfort, no matter the goal • make recommendations • can ask “What is important in the time left?” or “What would he want us to do if he could sit up and talk to us?”

16. Translate goals into a plan of care • review plans for care • discuss DNR, DNI, tube feedings • summarize all decisions made/plans for care • offer again to answer questions

17. Document in chart family meeting discussion Discuss with team members what transpired during meeting (i.e., nurses, consultants) Debrief (what went wrong, how can we improve in the future) Take a deep breath

18. VALUE • V=valuing and appreciating what the family says • “I appreciate you coming to this meeting today and telling us your father’s values and goals—this helps us develop the best plan of care.” • A=acknowledging the family’s emotions • “I imagine this is not what you expected (wanted) to hear—this must be so hard on all of you.”

19. L=listening and understanding the family • U= understanding the patient as a person • “Tell me what your father enjoyed as a person before this all happened.” and/or “What would you father think of all of this?” • E=eliciting questions • “What concerns do you have? Are there any questions that I might be able to answer?”

20. When there is conflict… • Remain neutral • do not take sides—this will be hard, as the disagreeing family member may agree with what you think • if everyone starts fighting and disagreeing, you might consider saying “I can see that you all have some disagreements—I wonder if we could put these disagreements aside so we can focus on what’s going on with your father.” • but let other family members care for each other before you jump in—take a secondary role

21. if a family member displays empathy, reward them by commenting about their empathy • if the family continues arguing or disagreeing, step in with empathy—this will have value to family members in how you model empathy • above all, remember you are primarily a facilitator, as well as the medical expect

22. Name the disagreement/conflict • Acknowledge the emotion in the room • Respect everyone’s opinion • Determine source of disagreement/conflict • grief • guilt • family dysfunction • distrust in medical team • culture

23. Clarify any misperceptions Negotiate for time limited goals

24. And now advance directives… A 1991 federal law, the Patient Self-Determination Act, requires that patients are informed about their right to participate in health care decisions, including their right to have an advance directive. Advance directives fall into two broad categories: instructive and proxy. Instructive directives allow for preferences regarding the provision of particular therapies or classes of therapies. Living wills are the most common examples of instructive directives

25. The proxy directive, generally a Durable Power of Attorney for Health Care (DPAHC), allows for the designation of a surrogate medical decision maker of the patient's choosing. This surrogate decision maker makes medical care decisions for the patient in the event he/she is incapacitated

26. Each state has its own laws or regulations regarding advance directives, but when a patient from out of state is treated at MUSC, we honor their advance directive from their home state

27. Life Expectancy

28. Conclusions • Mammography use inversely associated with 4-yr mortality risk after adjusting for confounders • Prognosis seems to be a factor in decision to receive mammography in older female Medicare beneficiaries

29. Again… • Healthcare Power of Attorney • a written, legal document that states who the patient has chosen to make health care decisions for them if they become unable to make medical decisions • document does not have to be notarized

30. Living Will (Declaration of a Desire for Natural Death) • a written, legal document that describes the kind of medical treatments or life-sustaining treatments a patient would want if they were seriously or terminally ill • document must be notarized

31. At MUSC, Chaplin Service is designated to help patients complete advance directives

32. The Declaration of a Desire for Natural Death (Living Will) for South Carolina states: • “In the absence of my ability to give directions regarding the use of life-sustaining procedures, it is my intention that this Declaration be honored by my family and physicians and any health facility in which I may be a patient as the final expression of my legal right to refuse medical or surgical treatment, and I accept the consequences from the refusal.” • “I am aware that this Declaration authorizes a physician to withhold or withdraw life-sustaining procedures. I am emotionally and mentally competent to make this Declaration.”

33. It specifically addresses artificial nutrition and hydration in a terminal condition and a persistent vegetative state, stating that both either be provided or not provided (separate individual statements)

34. However, the Healthcare Power of Attorney in South Carolina also addresses withholding and withdrawing treatments, as well as tube feedings

35. It specifically allows 1 of 3 selections for all treatments other than tube feedings: • grants discretion to the agent • directs to withhold or withdraw treatment • directs maximum treatment

36. And for tube feedings, it allows 1 of 3 choices: • grants discretion to the agent • directs to withhold or withdraw • allows provision of tube feedings within the standards of accepted medical practice, without regard to medical condition, without regard to whether other forms of life-sustaining therapy are being withheld or withdrawn, without regard to whether recovery is expected or not, and without regard for the cost of the procedure