Talking the Talk: Having Those

Difficult DiscussionsWith A Bit About Advance With A Bit About Advance

DirectivesDirectives

Paul Rousseau, MDPaul Rousseau, MDMedical University of South Medical University of South

CarolinaCarolina

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

• 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

But delivering difficult news But delivering difficult news can be challenging…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

Basic “rules…”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 honestyBack A, Arnold R, Tulsky J. Mastering Communication with Seriously Ill Patients, Cambridge University Press 2009

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

• 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

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

Roadmap to conducting a family conference…

• Prepare Prepare – review the chartreview the chart– speak with attending physician(s) and speak with attending physician(s) and

consultants and unify messageconsultants and unify message– know all family psychosocial informationknow all family psychosocial information– clarify goals for the meetingclarify goals for the meeting– decide who from the medical team will be decide who from the medical team will be

therethere– establish proper setting (not in a hallway!)establish proper setting (not in a hallway!)– take a deep breathtake a deep breath

• 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

• Obtain family understanding of medical Obtain family understanding of medical conditioncondition– ““Tell me your understanding of your father’s Tell me your understanding of your father’s

current medical condition.”current medical condition.”– encourage everyone present to speakencourage everyone present to speak– for patients with a chronic condition, ask for a for patients with a chronic condition, ask for a

description of changes during the past description of changes during the past weeks/monthsweeks/months

– if the patient is hospitalized, ask how things if the patient is hospitalized, ask how things have changed from admissionhave changed from admission

• Medical reviewMedical review– fire a warning shot if family not aware (i.e., fire a warning shot if family not aware (i.e.,

tumor found on CT scan); you might say “The tumor found on CT scan); you might say “The scan of your father’s abdomen did not show scan of your father’s abdomen did not show what we expected.”what we expected.”

– summarize the big picture in a few sentencessummarize the big picture in a few sentences– avoid medical jargon (i.e., ventilator, CBC, avoid medical jargon (i.e., ventilator, CBC,

catheter, imaging, MRI, CT, pulse ox, etc—use catheter, imaging, MRI, CT, pulse ox, etc—use 88thth grade language) grade language)

– offer to answer questionsoffer to answer questions– ask about the patient as a person (can do now ask about the patient as a person (can do now

or can also do at beginning of meeting—might or can also do at beginning of meeting—might be best at beginning, would help set goals be best at beginning, would help set goals later on)later on)

• Allow silence Allow silence • Recognize and react to emotionsRecognize and react to emotions

– use an empathic statement such as “This must use an empathic statement such as “This must be so hard for you,” or “I can see this is very be so hard for you,” or “I can see this is very difficult for you.”difficult for you.”

– if family members angry you can say “I can if family members angry you can say “I can see that you’re upset, this must be so difficult see that you’re upset, this must be so difficult for you.”for you.”

• Present options and set goalsPresent options and set goals– prognosisprognosis– present goal-oriented options (i.e., prolong present goal-oriented options (i.e., prolong

life, improve function, hospice, etc)life, improve function, hospice, etc)– stress comfort, no matter the goalstress comfort, no matter the goal– make recommendationsmake recommendations– can ask “What is important in the time left?” can ask “What is important in the time left?”

or “What would he want us to do if he could sit or “What would he want us to do if he could sit up and talk to us?”up and talk to us?”

• 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

• Document in chart family meeting Document in chart family meeting discussiondiscussion

• Discuss with team members what Discuss with team members what transpired during meeting (i.e., nurses, transpired during meeting (i.e., nurses, consultants)consultants)

• Debrief (what went wrong, how can we Debrief (what went wrong, how can we improve in the future)improve in the future)

• Take a deep breathTake a deep breath

• 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.”

– 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?”

When there is conflict…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

– 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

• Name the disagreement/conflictName the disagreement/conflict• Acknowledge the emotion in the roomAcknowledge the emotion in the room• Respect everyone’s opinionRespect everyone’s opinion• Determine source of disagreement/conflictDetermine source of disagreement/conflict

– griefgrief– guiltguilt– family dysfunctionfamily dysfunction– distrust in medical teamdistrust in medical team– cultureculture

• Clarify any misperceptionsClarify any misperceptions• Negotiate for time limited goalsNegotiate for time limited goals

And now advance And now advance directives…directives…

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

• 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

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

Life ExpectancyLife ExpectancyFour-Year Mortality Index for Older Adults http://www.soapnote.org/elder-care/4-year-prognostic-index/

Age 60-64 1

65-69 2

70-74 3

75-79 4

80-84 5

≥85 7

Sex Male 2

Female 0

BMI <25 1

Has a doctor ever told you that you have:

Diabetes Yes 1

Cancer or malignant tumor, exc. minor skin cancers Yes 2

Chronic Lung Disease that limits usual activities or makes you need 02 at home Yes 2

CHF Yes 2

Have you smoked cigarettes in past week? Yes 2

Because of health or memory problems, difficulty with:

Managing your money such as paying your bills and keeping track of expenses? Yes 2

Walking several blocks? Yes 2

Pulling or pushing large objects like a living room chair? Yes 1

Risk of 4 Year Mortality: 0-5 3% risk; 6-9 15% risk; 10-13 40% risk and 14+ 67% risk Total Points:

Reference: Lee SJ, Lindquist K, Segal MR, and Covinsky AE. (2006) Development and Evaluation of a Prognostic Index of

4-Year Mortality in Older Adults. JAMA 295(7):801-808. 

Risk %

ConclusionsConclusions

• Mammography use inversely associated Mammography use inversely associated with 4-yr mortality risk after adjusting for with 4-yr mortality risk after adjusting for confoundersconfounders– Prognosis seems to be a factor in decision to Prognosis seems to be a factor in decision to

receive mammography in older female receive mammography in older female Medicare beneficiariesMedicare beneficiaries

Again…Again…

• Healthcare Power of AttorneyHealthcare Power of Attorney– a written, legal document that states who the a written, legal document that states who the

patient has chosen to make health care patient has chosen to make health care decisions for them if they become unable to decisions for them if they become unable to make medical decisionsmake medical decisions

– document does not have to be notarizeddocument does not have to be notarized

• Living Will (Declaration of a Desire for Living Will (Declaration of a Desire for Natural Death)Natural Death)– a written, legal document that describes the a written, legal document that describes the

kind of medical treatments or life-sustaining kind of medical treatments or life-sustaining treatments a patient would want if they were treatments a patient would want if they were seriously or terminally illseriously or terminally ill

– document must be notarizeddocument must be notarized

• At MUSC, Chaplin Service is designated At MUSC, Chaplin Service is designated to help patients complete advance to help patients complete advance directivesdirectives

• The Declaration of a Desire for Natural The Declaration of a Desire for Natural Death (Living Will) for South Carolina Death (Living Will) for South Carolina states:states:– ““In the absence of my ability to give directions In the absence of my ability to give directions

regarding the use of life-sustaining procedures, regarding the use of life-sustaining procedures, it is my intention that this Declaration be it is my intention that this Declaration be honored by my family and physicians and any honored by my family and physicians and any health facility in which I may be a patient as the health facility in which I may be a patient as the final expression of my legal right to refuse final expression of my legal right to refuse medical or surgical treatment, and I accept the medical or surgical treatment, and I accept the consequences from the refusal.”consequences from the refusal.”

– ““I am aware that this Declaration authorizes a I am aware that this Declaration authorizes a physician to withhold or withdraw life-physician to withhold or withdraw life-sustaining procedures. I am emotionally and sustaining procedures. I am emotionally and mentally competent to make this Declaration.”mentally competent to make this Declaration.”

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

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

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

• And for tube feedings, it allows 1 of 3 And for tube feedings, it allows 1 of 3 choices:choices:– grants discretion to the agentgrants discretion to the agent– directs to withhold or withdrawdirects to withhold or withdraw– allows provision of tube feedings within the allows provision of tube feedings within the

standards of accepted medical practice, standards of accepted medical practice, without regard to medical condition, without without regard to medical condition, without regard to whether other forms of life-regard to whether other forms of life-sustaining therapy are being withheld or sustaining therapy are being withheld or withdrawn, without regard to whether withdrawn, without regard to whether recovery is expected or not, and without recovery is expected or not, and without regard for the cost of the procedureregard for the cost of the procedure