Fast Facts and Concepts Discussion Blog: February 2010

Friday, February 5, 2010

#227 The Family Meeting: End of Life Goal Setting and Future Planning

FAST FACTS AND CONCEPTS #227

The Family Meeting: end of life Goal Setting and Future planning

David E Weissman MD, Timothy E Quill MD, and Robert M Arnold MD

Background End-of-life goal setting is a key palliative care skill, typically occurring as part of a family meeting (see Fast Facts #16, 65, 222-226). This Fast Fact discusses an approach to goal setting when the expected length of life is short.

Establishing patient-centered goals Here is an example of how to start the conversation (the patient should be given sufficient time to respond to each of these questions):

I/we have discussed your current condition and that time may be short. With that in mind –

What are you hoping for now?
What is important to you?
What do you need to accomplish?
Who do you need to see in the time that is left?

Common responses invoke family, home, and comfort; often surviving until a specific future family event/date or visit with a key family member is described as an important goal. Re-state your understanding: What I hear you saying is that you want to be home, comfortable, and survive until your daughter gives birth – you hope to meet your next grandchild. Note: if you believe the patient’s goal of survival to a specific event/date is not practical, it is important to say so and discuss alternative plans.

Recommend a care plan based on the goals Once the goal(s) is/are established, you can then review the patient’s current treatments (e.g. antibiotics, chemotherapy), monitoring (e.g. pulse oximetry), planned tests (e.g. colonoscopy), and medications (e.g. anti-hypertensives), and decide which will help meet, or not, the patient’s goals. Anything that will not help meet the goals should be discussed for potential discontinuation. Depending on the specific disease/patient condition, other issues that are naturally discussed at this point include:

Future hospitalizations, ICU admissions, laboratory and radiology tests.
Resuscitation orders/code status (see Fast Facts #23-24).
Current/future use of blood products, antibiotics, artificial hydration/nutrition.
If present, the potential continuation or stopping of dialysis or cardiac devices.
Role of a second (or third) opinion.
Exploration of experimental therapy.
Exploration of treatment options the patient or family may bring into the conversation.
Disposition options to best meet the goals (e.g. home hospice referral).

Note: There is no need to ask about each option as a yes/no question (Do you want blood products?). Based on what you know about the patient’s goals, make a recommendation about what should and should not be done in light of the patient’s goals, condition and prognosis. If you are unsure, you can explore the issue with the patient/family (Given that your dad wanted to get home as soon as possible and yet he was also willing to do easy things that might help him live longer, I am unsure whether it makes sense to stay in the hospital an extra day or two to finish the antibiotics. What do you think he would say?).

‘Long-shot’ goals If patients are going to pursue ‘long-shot’ or experimental therapy, perhaps even against the recommendation of the treating team, it is useful to ensure the following:

Reinforce the team’s respect for the decision, and desire to make sure the treatment has the best possible chance of working.
Simultaneously try to maximize quality of life in the present, including the best possible pain and symptom management and support.
Encourage the patient and family to prepare in case treatment is not successful and the patient dies sooner rather than later. Useful language is to say, I’d encourage us all to hope for the best, but prepare for the worst.
Reinforce that the team will not abandon the patient and family even if the decision is not what is being recommended.

Close the meeting Following this discussion, restate your understanding of the patient’s goals and agreed-upon next steps to meet those goals, invite and answer questions, and close the meeting.

Discussion & documentation Discuss the goals with key staff not in attendance (e.g. consulting physicians, patient’s nurse, discharge planner, primary care provider). Document the goals, preferably using a templated family meeting note (see Reference 1): who was present, what was discussed (e.g. treatment options, prognosis), what was decided, next steps.

Debriefing A useful step after every family meeting is to debrief the process – what went well, what could have been improved and, most importantly, addressing the emotional reaction and needs of the care team.

References

Clinical Tools. Center to Advance Palliative Care. Available at: http://www.capc.org/tools-for-palliative-care-programs/clinical-tools/. Accessed August 4, 2009. Free registration required.

2. Back A, Arnold R, Tulsky J. Mastering communication with seriously ill patients: balancing honesty with empathy and hope. New York, NY: Cambridge University Press; 2009.

Author Affiliations: Medical College of Wisconsin, Milwaukee, WI (DEW); University of Rochester Medical Center, Rochester, NY (TEQ); University of Pittsburgh School of Medicine, UPMC Health System, Pittsburgh, PA (RMA).

Fast Facts and Concepts are edited by Drew A. Rosielle MD, Palliative Care Center, Medical College of Wisconsin. For more information write to: drosiell@mcw.edu. More information, as well as the complete set of Fast Facts, are available at EPERC: http://www.mcw.edu/eperc. Readers can comment on this publication at the Fast Facts and Concepts Discussion Blog (http://epercfastfacts.blogspot.com).

Copyright/Referencing Information: Users are free to download and distribute Fast Facts for educational purposes only. Weissman DE, Quill TE, Arnold RM. The Family Meeting: End of Life Goal Setting and Future Planning. Fast Facts and Concepts. February 2010; 227. Available at: http://www.eperc.mcw.edu/fastfact/ff_227.htm.

Disclaimer: Fast Facts and Concepts provide educational information. This information is not medical advice. Health care providers should exercise their own independent clinical judgment. Some Fast Facts cite the use of a product in a dosage, for an indication, or in a manner other than that recommended in the product labeling. Accordingly, the official prescribing information should be consulted before any such product is used.

#226 Helping Surrogates Make Decisions

FAST FACTS AND CONCEPTS #226

Helping Surrogates Make decisions

David E Weissman MD, Timothy E Quill MD, and Robert M Arnold MD

Background Surrogate decision makers are often placed in the difficult position of making what feels to them as life or death decisions. This Fast Fact reviews an approach to help surrogates through the decision process when patients cannot participate in decision-making themselves.

Surrogate decision making The surrogate’s role is clearly to exercise “substituted judgment” – that is, to make decisions as the patient would make them using the patient’s values and preferences as previously expressed. The challenge was clearly expressed by the New Jersey Supreme Court in the Quinlan case: if (the patient) could wake up for 15 minutes, understand his current medical situation completely, and then had to go back into it, what would he tell us to do? In the case of children, surrogate decision makers (usually parents) are expected to make decisions that represent the child’s ‘best interests’; depending on the age and capacity of the child to participate in his/her own healthcare decision making, the applied ‘best interest’ judgment by the surrogate and healthcare providers may incorporate the patient’s values and preferences to the extent possible, or may be solely based on the decision maker’s interpretation of best interest. If there is conflict about what is in a child’s best interest, or in cases of developmentally disabled adults who have never had capacity, consultation from ethics and law may be appropriate, as the rules governing decision-making vary considerably.

Helping surrogates

1. Before making a recommendation, make sure there is a common understanding of the patient’s condition and prognosis. Following this, the next step is to try to understand the patient’s goals in light of these medical facts.

2. Bring the patient’s “voice” into the decision process even if he/she cannot participate directly: If your father were sitting here with us, what would he say? If available, share a copy of any advance care planning document with the surrogate. Realize that it is common for the surrogate never to have seen the document.

3. Whenever possible, frame the decision around the treatment goals (e.g. life prolongation, allowing a peaceful death) in light of the patient’s current condition, rather than focusing on very specific treatments (e.g. thoracentesis, antibiotics). The details of the medical plan should flow from the overall goals of care.

4. Do not make the surrogate feel that they are taking full responsibility for medical decisions, especially those which may result in the death of their loved one (We can do option a or b; what would like me to do?). Once you have a sense of the patient’s goals in light of his/her medical condition, offer to make a recommendation that reflects those goals. Note: Many families are looking for support and guidance from medical professionals, especially the physician. Given what you have told me about your mother, and what we know about her medical condition, I would recommend…. Start with what you are going to do to achieve the patient’s goals and then talk about what does not make sense given those goals. Remember, however, that some families may want information but not your recommendation. It is therefore important to offer your recommendation (Would it be helpful for me to say what medically makes the most sense, given what you’ve told me about your Dad?).

5. Remember that we are talking about the potential death of the surrogate’s loved one. Emotions – sadness, frustration and guilt – are normal. Use previously discussed emotion management skills to acknowledge, legitimize, empathize and support the family’s emotional response (see Fast Facts #29 and #224).

6. Do not argue over the facts; repeating the facts over and over again is not likely to be effective. When the surrogate says He is a fighter, acknowledge that he is and has really fought hard. The surrogate saying I want you to do everything is as much a sign of emotional desperation as it is a factual request. Respond with empathy: It seems this is really hard for you. If hope for a miracle is expressed, it is appropriate to acknowledge that you hope for an unancticipated recovery as well, but that a miracle is truly what it would take at this point.

7. Rather than reiterating what medicine cannot do, consider using “I wish” statements to keep you in touch with the surrogate’s feelings, while simultaneously expressing medicine’s limitations (I wish our medicines were more effective; I wish we had more medical treatment to offer than we do…).

8. Recognize the importance of time and support for surrogates to do their necessary grief-work. Offer counseling services, either informal through the work of a palliative care team, or more formal resources available at your institution. Bring together your clinical care team and strategize potential resources for support such as chaplaincy, social services, psychology, palliative care or ethics consultation.

Remember that time is your ally. The surrogate needs to process that their loved one is dying and conceptualize what life will be like without him or her. This grief work takes time and psychological support. Often, letting people think about what you have said and talking again over subsequent days provides them the space to do grief work. It also allows them to see for themselves that what you have advised is coming true (e.g. the patient is not getting better).

References

Quill TE, Brody H. Physician recommendations and patient autonomy: Finding a balance between physician power and patient choice. Ann Intern Med. 1996; 125:763-769.
Quill TE, Arnold RM, Platt FW. "I wish things were different": Expressing wishes in response to loss, futility, and unrealistic hopes. Ann Intern Med. 2001; 135:551-555.
Fisher R, Ury W. Getting to Yes: Negotiating Agreement Without Giving In. Boston, MA: Houghton-Mifflin; 1981.
Quill TE, Arnold RM, Back A. Discussing treatment preferences in patients who want "everything". Ann Intern Med. 2009; 151:345-349.

Copyright/Referencing Information: Users are free to download and distribute Fast Facts for educational purposes only. Weissman DE, Quill TE, Arnold RM. Helping Surrogates Make Decisions. Fast Facts and Concepts. February 2010; 226. Available at: http://www.eperc.mcw.edu/fastfact/ff_226.htm.

#225 The Family Meeting: Causes of Conflict

FAST FACTS AND CONCEPTS #225

THE FAMILY MEETING: causes of Conflict

David E Weissman MD, Timothy E Quill MD, and Robert M Arnold MD

Background When family meetings are conducted with the goal of helping a patient/family cope with a shift in goals from life-sustaining treatments to a more comfort focused approach, communication can break down. This Fast Fact reviews the common causes of conflict.

Recognizing Conflict When the patient/surrogates are not psychologically ready to accept the limits of medical interventions or the finality of the impending death, you will hear comments such as these: There must be some mistake; I know there are other treatments available; We want a second opinion; We believe in miracles; She is fighter, she will never give up; There must be something (medically) you can do. Health professionals may interpret these statements as ‘denial.’ But the term denial, by itself, is insufficient to help the clinician understand what is causing the impasse. Understanding the cause is essential in planning an effective strategy to move beyond the conflict to meet the needs of the patient and surrogates.

Information Gaps

Inaccurate understanding of the patient’s medical condition (e.g. overly optimistic or pessimistic prognosis).
Inconsistent information (One doctor tells us one thing and another something else.).
Confusing information (e.g. use of medical jargon, multiple treatment options presented without a clear recommendation).
Excessive information (well-meaning family/friends/clinicians providing information without full awareness of the problems).
Genuine uncertainty (e.g., predicting functional outcome from a brain injury in its immediate aftermath may be impossible).
Language/translation/cultural issues (We never tell someone they are dying in our culture.).

Treatment Goal Confusion

Inconsistent treatments and unclear goals, often due to physician/patient/surrogate emotional issues (see below):

Clinician initiated: We will keep your husband on blood pressure raising medicine but stop antibiotics.
Family initiated: We want you to do CPR, but not intubate her.

Differing priorities about disease-directed treatment and comfort-oriented treatment between clinicians and patient/family.
Lack of clarity about goals when several things are going on simultaneously (advanced cancer, severe infection, respiratory failure – Isn’t the pneumonia potentially treatable?)

Emotions

Grief (I don't know how I will live without him.)
Fear/anxiety (I don't want to be responsible for ending my father's life. My family will be angry at me for doing this.)
Guilt (I haven't visited my sister in 20 years. I should have been here for her.)
Anger (My mother was very abusive, I've never forgiven her; you are just giving up on her.)
Hope (I’m still hoping and praying she can pull through this.)

Family/Team dynamics

Patient/family conflicted within themselves; may want different things at different times
Dysfunctional family system (family members unable to put the patient's needs/values/priorities above their own).
Surrogate lack of ability (cognitive deficit, psychological/psychiatric trait/illness). In pediatrics, this can be conflict between what is in the best interest of a child vs. a caregiver or family.
Consulting teams disagree about the optimal approach, putting the patient/family in the middle of the dispute.

Relationship between the Clinician and the Patient/Surrogate

Lack of trust in the health care team/health care system.
Past experiences where the patient has had a better outcome than predicted.
Genuine value differences:

Cultural/religious values concerning life, dying, and death.
Clinician value of wanting to protect the patient from invasive, non-beneficial treatment while the family values wanting to prolong life no matter how much suffering it might entail.

All of these issues represent a degree of conflict and will need to be addressed before proceeding to set end-of-life goals. See Fast Facts #183,184 for additional discussion on managing conflict.

Debriefing Conflicts are stressful for all involved health professionals. It is helpful to debrief the process – what went well, what could have been improved, and – most importantly – addressing the emotional reaction and needs of the care team. See Fast Fact # 203 on managing clinician emotions.

References

Back AL, Arnold RM. Dealing with conflict in caring for the seriously ill. JAMA. 2005; 293:1374-1381.
Lazare A, Eisenthal S, Frank A. Clinician/Patient Relations II: Conflict and Negotiation. In: Lazare A, ed. Outpatient Psychiatry. Baltimore, MD: Williams and Wilkins; 1989.
Fisher R, Ury W. Getting to Yes: Negotiating Agreement Without Giving In. Boston, MA: Houghton-Mifflin; 1981.
Quill TE. Recognizing and adjusting to barriers in doctor-patient communication. Ann Intern Med. 1989; 111:51-57.

5. Back A, Arnold R, Tulsky J. Mastering communication with seriously ill patients: balancing honesty with empathy and hope. New York, NY: Cambridge University Press; 2009.

Copyright/Referencing Information: Users are free to download and distribute Fast Facts for educational purposes only. Weissman DE, Quill TE, Arnold RM. The Family Meeting: Causes of Conflict. Fast Facts and Concepts. January 2010; 225. Available at: http://www.eperc.mcw.edu/fastfact/ff_225.htm.

#224 Responding to Emotions in Family Meetings

FAST FACTS AND CONCEPTS #224

Responding TO EMOTION IN FAMILY MEETINGS

David E Weissman MD, Timothy E Quill MD, and Robert M Arnold MD

Background Family meetings are stressful events, often provoking strong emotional reactions. Fast Fact #29 presents a general outline on the topic of how clinicians can respond to emotions. The Fast Fact will provide a more detailed approach to emotions that arise during family meetings.

Consider your role. It is important to reflect on the role of clinicians in responding to patient/family emotions at the time life-altering information is shared. The goal is not to prevent a patient/family from having those emotions. Sadness, fear, anger, and loss are normal responses to unwelcome news. Instead your role is: 1) to maintain a trusting therapeutic relationship and safe/supportive environment that allows emotions to be expressed in a way that meets the patient’s/family’s needs; and 2) not to worsen the experience for the patient/family by ignoring or delegitimizing their responses, or confusing them with medical information when they are not ready to hear it. Recognize that most families find clinicians’ expressions of empathy tremendously supportive and these are associated with family satisfaction.

Acknowledge that emotion is being expressed. If you have a good sense of what the emotion is, then it is useful to name it. If not, using more general language is preferable.

• I can see this is really affecting you.

• This information is very upsetting.

Legitimize the appropriateness and normalcy of the reaction. Medical professionals are in a powerful position to help patients and families feel that strong emotions under these circumstances are normal and to be expected.

• Anyone receiving this news would feel devastated.

• It is completely expected to be very distressed by this kind of news.

Explore more about what is underneath the emotion. It is tempting to try to limit the emotion, and be prematurely reassuring. But it is generally more helpful and ultimately more time-efficient to allow the patient and family to more deeply explore their feelings and reactions.

• Tell me what is the scariest (most difficult) part for you.

• Tell me more about that…. (Keep the exploration going until it is fully expressed and understood.)

Empathize (if you genuinely feel it). Empathy means being able to emotionally imagine what the patient is going through. Clinicians can initiate the prior responses (acknowledge, legitimize, explore) without having a clear feeling for the patient’s experience. These responses can be adequate in themselves. If the clinician cannot imagine the patient’s experience, he or she can still sensitively explore the experience and provide caring and support. But if you have a strong sense of what the patient is experiencing, it can be very therapeutic to express it.

• This seems really unfair.

• I can imagine that you might feel very disappointed.

Explore strengths/coping strategies. This may occur at this phase of the interview, or it may be postponed to a later phase when planning for next steps begins.

• In past circumstances, what has helped?

• How have you adapted to difficult circumstances in the past?

• What are you hoping for now?

References

1. Back A, Arnold R, Tulsky J. Mastering communication with seriously ill patients: balancing honesty with empathy and hope. New York, NY: Cambridge University Press; 2009.

2. Suchman AL, Markakis K, Beckman HB, Frankel R. A model of empathic communication in the medical interview. JAMA. 1997; 277:678-682.

3. Hardee JT. An overview of empathy. The Permanente Journal. 2003; 7(online). Available at: http://xnet.kp.org/permanentejournal/fall03/cpc.html. Accessed August 5, 2009.

Copyright/Referencing Information: Users are free to download and distribute Fast Facts for educational purposes only. Weissman DE, Quill TE, Arnold RM. Responding to Emotions in Family Meetings. Fast Facts and Concepts. January 2010; 224. Available at: http://www.eperc.mcw.edu/fastfact/ff_224.htm.

#223 The Family Meeting: Starting the Conversation

FAST FACTS AND CONCEPTS #223

THE FAMILY MEETING: Starting the conversation

David E Weissman MD, Timothy Quill MD, and Robert M Arnold MD

Background Fast Fact #16 gives a concise overview of running a family meeting. Fast Fact #222 provides a list of preparatory steps in planning for a family meeting to discuss end-of-life goals; this Fast Fact reviews the early steps of the actual meeting.

1. Introductions & setting goals for the meeting

The meeting leader begins the meeting by introducing him or herself, and suggesting that each person present (medical team and family/community) introduce themselves including their relationship to the patient.
The meeting leader should summarize the meeting goals (e.g. We are here to discuss next steps in the care of Mr. Jones) and ask the family to confirm these goals and/or add other agenda items.
Note: if you do not know the patient or family well, take a moment to build relationship. Ask a non-medical question such as I am just getting to know you. I had a chance to look at your chart and learn about your medical condition but it does not say much about your life before you got sick. Can you tell us about the things you liked to do before you got sick? Similarly, if the patient is not able to participate in the meeting, ask family to describe the patient prior to his becoming ill: As we get started, can you describe what Mr. Jones was like before he became ill?

2. Determine what the patient/family already knows This step is essential as it guides you in providing a synthesis of the medical information (see below). Always invite the patient and all family members to provide their understanding of the medical information. Examples of opening lines:

Tell me what the doctors have told you about your condition?
Can you describe for me your sense of how things are going?
For patients who have been declining from a chronic illness, you can ask: Tell me about the past 3-6 months: what types of changes have you noted? The patient or family will typically describe changes in terms of function (physical or cognitive) and quality of life.

3. The Medical Review Once you know what the patient/family understands, you are in a good position to confirm their understanding, or provide new information/correct misunderstandings. First, ask if you can bring them up-to-date about what is going on; asking shows politeness and also signals that they should attend to what you are trying to say. The clinician most closely aligned with the patient’s ongoing treatment should begin this discussion, supplemented with information from consulting services if relevant. Do not provide information using medical jargon or in an organ system approach (e.g. The creatinine is improving, but there is a new pleural effusion and the heart rate has become irregular). A more patient-centered approach is to provide a succinct summary of the current condition, without any medical jargon, focusing on the issues of most importance, which are usually function/quality/time. Give a ‘bottom-line’ statement: ‘getting worse,’ ‘not going to improve,’ ‘dying and time is likely very short.’

The worsening weakness and pain you describe is from the cancer which is growing despite the chemotherapy.
You are telling me that despite the recent hospitalization, you are not able to do as much around the house; unfortunately your lung disease is getting worse despite all our best treatments.
Despite our best efforts, your wife’s brain injury from the car crash is getting worse. She can no longer stay awake or move her arms/legs.

Using the ‘D word’ if relevant: when a patient is clearly deteriorating and death is likely within the next days to weeks, or even a few months, it is appropriate to use the word dying in the conversation. Both patients and surrogates find that saying the word dying, if done compassionately, is helpful in clearing what is often a confusing and frightening situation. I’m afraid we have run out of options to shrink the cancer. Based on your declining function, I believe you are dying.

4. Silence Whether or not you use the word dying, when you have presented bad news (such as information about disease progression), the next step is for you to allow silence, and let the family/patient respond. In truth, no matter what you might imagine the response from the patient/family to be once the bad news is delivered, you really cannot predict their emotional reaction (e.g. relief, anxiety, anger, regret, fear). This silence can be uncomfortable; resist the urge to fill it with more facts as they will not be heard. Not all patients/families express emotions at this point and instead respond practically (Well, what happens next then?). This is fine, but you need to wait, silently, to see what response the patient/family demonstrates. In addition, even practical questions have underlying emotions (Are you sure? Or – There must be something you can do?). It is important to respond to both the factual aspect of the question (Yes I am sure. Or – There are no more effective treatments available.), as well as the emotional level (I wish I had better news for you. Or – I wish our treatments worked better than they do.).

When the patient/surrogates openly acknowledge that current treatments are no longer effective, that death is coming, they will generally ask one or all of the following questions: How long? What will happen? Will there be suffering? What do we do now? Your response at this point should be to address prognosis in terms of time, function, and symptoms, as best you can (see Fast Facts #13,141,143,149,150). This will answer the first two questions; the last questions will require more discussion of patient-centered goals (see Fast Fact #227).

References

1. Back A, Arnold R, Tulsky J. Mastering communication with seriously ill patients: balancing honesty with empathy and hope. New York, NY: Cambridge University Press; 2009.

2. Quill TE, Townsend P. Bad news: delivery, dialogue and dilemmas. Arch Intern Med. 1991; 151:463-468.

3. Curtis JR, Patrick DL, Shannon SE, et al. The family conference as a focus to improve communication about end-of-life care in the intensive care unit: opportunities for improvement. Crit Care Med. 2001; 29(2 Suppl):N26-33.

4. Lautrette A, Ciroldi M, Ksibi H, Azoulay E. End-of-life family conferences: rooted in the evidence. Crit Care Med. 2006; 34(11):S364-S372.

King DA, Quill T. Working with families in palliative care: one size does not fit all. J Pall Med. 2006; 9:704-715.

6. Quill TE, Arnold RM, Platt FW. "I wish things were different": Expressing wishes in response to loss, futility, and unrealistic hopes. Ann Intern Med. 2001; 135:551-555.

Copyright/Referencing Information: Users are free to download and distribute Fast Facts for educational purposes only. Weissman DE, Quill TE, Arnold RM. The Family Meeting: Starting the Conversation. Fast Facts and Concepts. December 2009; 223. Available at: http://www.eperc.mcw.edu/fastfact/ff_223.htm.

#222 Preparing for the Family Meeting

FAST FACTS AND CONCEPTS #222

PREPARing FOR THE FAMILY MEETING

David E Weissman MD, Timothy E Quill MD, and Robert M Arnold MD

Background A cornerstone procedure in Palliative Medicine is leadership of family meetings to establish goals of care, typically completed at a time of patient change in status, where the value of current treatments needs to be re-evaluated. As with any procedure, preparation is essential to ensure the best outcome. This Fast Fact reviews how to prepare for a Family Meeting. See also Fast Fact #16 for a concise overview of family meetings, as well as Fast Facts 223-227 for discussion of additional aspects of family conferences.

Data Review

· Review the medical history relevant to the current medical situation (e.g. history of disease progression, symptom burden, past treatments, treatment-related toxicity, and prognosis).

· Review all current treatments (e.g. renal dialysis, artificial nutrition, antibiotics) and any positive and/or negative treatment effects.

· Review all treatment options being proposed.

· Determine the prognosis with and without continued disease-directed treatments. Prognostic information includes data concerning future patient function (physical/cognitive), symptom burden, and time (longevity).

· Solicit and coordinate medical opinions about the utility of current treatments among consultants and the primary physician. If possible, families need to hear a single medical consensus—all relevant clinicians should be contacted and consensus reached prior to the meeting. If the consultants do not agree, then prior to the family meeting they should meet to negotiate these differences and attempt to reach consensus regarding the plan. If there is no consensus, a plan should be developed for how to describe these differences to families.

· If the patient lacks capacity, review any Advance Directive(s), with special attention to discover if the patient has named a surrogate decision maker, and if the patient has indicated any specific wishes (e.g. DNR status, ‘no feeding tubes’).

· Seek out patient/family psychosocial data. Focus on psychological issues and family dynamics (e.g. anger, guilt, fear) potentially impacting decision making. These issues may be long-standing, or due to the current illness. Note: talking to the patient’s social worker, bedside nurses, and primary and consulting physicians can help you get a better sense of the family and how they make decisions.

o Review what transpired in prior family meetings.

o Learn about particular cultural/religious values and/or or social/financial issues that may impact decision making.

Information Synthesis Based on your review of the medical and prognostic data, make an independent determination of which current and potential tests/treatments will improve, worsen, or have no impact on the patient’s function/quality of life (physical/cognitive) and time (longevity).

Meeting Leadership Leading a family meeting requires considerable flexibility to ensure that all relevant participants have the opportunity to have their points of view expressed. Though it is useful to have one person designated as the main orchestrator and coordinator of the meeting, the essential skills for making a family meeting successful can come from more than one participant. These skills include:

· Group facilitation skills.

· Counseling skills.

· Knowledge of medical and prognostic information.

· Willingness to provide leadership/guidance in decision making.

Invitations A decisional patient can be asked who he/she wants to participate from his/her family/community, including faith leaders; in general it is wise not to set any arbitrary limits on the number of attendees. The medical care team should likewise decide who they want to participate. Note: it is important not to overwhelm a family with too many health professionals. On the other hand, a physician from the primary team as well as a nurse and social worker should attend when possible; these individuals can help ensure the consistency of information as well as help deal with complicated dynamics. If the patient has a long-time treating physician whom he/she trusts, this person should ideally be present.

Setting The ideal setting is private and quiet, with chairs arranged in a circle or around a table. Everyone should be able to sit down if they wish. For non-decisional patients, the clinical team should negotiate with the surrogate whether or not to have the meeting in the presence of the patient.

The Pre-Meeting Meeting The participating health care members should meet beforehand to confirm: a) the goals for the meeting (e.g. information sharing, specific decisions sought), b) who will be the meeting leader to start the meeting, and c) likely sources of conflict and initial management strategies.

References

1. Back A, Arnold R, Tulsky J. Mastering communication with seriously ill patients: balancing honesty with empathy and hope. New York, NY: Cambridge University Press; 2009.

Curtis JR, Patrick DL, Shannon SE, et al. The family conference as a focus to improve communication about end-of-life care in the intensive care unit: opportunities for improvement. Crit Care Med. 2001; 29(2 Suppl):N26-33.
Lautrette A, Ciroldi M, Ksibi H, Azoulay E. End-of-life family conferences: rooted in the evidence. Crit Care Med. 2006; 34(11):S364-S372.
King DA, Quill T. Working with families in palliative care: one size does not fit all. J Pall Med. 2006; 9:704-715.
Weiner JS, Roth J. Avoiding iatrogenic harm to patient and family while discussing goals of care near the end of life. J Pall Med. 2006; 9:451-463.

6. Weissman DE. Decision making at a time of crisis near the end of life. JAMA. 2004; 292:1738-1743.

Copyright/Referencing Information: Users are free to download and distribute Fast Facts for educational purposes only. Weissman DE, Quill TE, Arnold RM. Preparing for the Family Meeting. Fast Facts and Concepts. December 2009; 222. Available at: http://www.eperc.mcw.edu/fastfact/ff_222.htm.

Fast Facts and Concepts Discussion Blog

Friday, February 5, 2010

#227 The Family Meeting: End of Life Goal Setting and Future Planning

#226 Helping Surrogates Make Decisions

#225 The Family Meeting: Causes of Conflict

#224 Responding to Emotions in Family Meetings

#223 The Family Meeting: Starting the Conversation

#222 Preparing for the Family Meeting

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Fast Facts and Concepts Discussion Blog

Friday, February 5, 2010

#227 The Family Meeting: End of Life Goal Setting and Future Planning

#226 Helping Surrogates Make Decisions

#225 The Family Meeting: Causes of Conflict

#224 Responding to Emotions in Family Meetings

#223 The Family Meeting: Starting the Conversation

#222 Preparing for the Family Meeting

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