How to run a family meeting

The Family Meeting to Discuss the Withholding and Withdrawal of Life-Sustaining Interventions.

Related terminology: End-of-Life; Withholding and Withdrawal of Life-sustaining Interventions; Do Not Attempt Resuscitation; Decision-making

1. Description of the problem

Introduction

Severely ill patients in the intensive care unit (ICU) are typically unable to directly participate in the complex discussions about the goals and direction of their care. Consequently, these critical conversations occur most often with the families of patients, the facilitation of which is an essential responsibility of ICU clinicians. Meetings with families to discuss these issues are often challenging and clinicians are often uncomfortable conducting them. The goal, however, is to agree on a plan of care that provides medically beneficial and appropriate treatments, if possible, but which is ultimately consistent with the goals and values of the patient or in the patient’s best interest.

Principles for conducting a family meeting

The family meeting to discuss the withholding and withdrawal of life-sustaining interventions must not be viewed as an isolated event. Rather, it is best understood as the culmination of an ongoing process of establishing, nurturing and sustaining trust from the moment of admission. This trust is best achieved by patiently providing respectful, compassionate care, and by communicating effectively with the family. Without it, there is a greater likelihood of conflict with the family.

Families fear a withdrawal of compassion, attention, effort and presence by nurses and physicians. It is therefore essential to never convey the sense that the medical team has “given up,” and to refrain from speaking about “stopping” or “ending” care. Instead, clinicians should frame their actions in terms of seeking and pursuing other achievable goals.

For the patient who lacks capacity, decision-making should be driven by the answers to three sequential questions:

Is the treatment medically appropriate and/or physiologically effective at this time in the patient’s illness?
If the treatment is both appropriate and effective, is this treatment the patient would have desired and accepted in the current situation?
If the treatment is both appropriate and effective but it is uncertain that it is what the patient would have wanted, is the treatment in the patient’s best interest?

If the answer to any of these questions, asked in the order above, is no, then the treatment or intervention should not be included in the plan of care.

Preparation for the family meeting

Whenever possible, family meetings to discuss end-of-life issues should be planned, scheduled events. To increase the likelihood of a productive conversation, the following should be done to prepare for the meeting (developing a pre-meeting checklist that incorporates these factors may be an efficient way of ensuring that they are considered before the meeting):

Schedule sufficient time

Plan for the meeting to last 30-60 minutes.

Ensure that the appropriate people will attend

Family, including the legal decision-maker and anyone else who might exercise a veto over any decision that might be made.
A physician and a nurse directly involved in the care of the patient.
If appropriate, the patient’s primary care providers, relevant consulting services, pastoral care and/or social work.

Consult, inform and/or invite relevant clinical and/or ancillary services as appropriate

These include:

Inpatient or outpatient physicians who have had an established relationship with the patient or family.
Consulting services that can speak to issues of possible outcomes and prognosis.
Pastoral care.
Social work.
Palliative care services.
Ethics committee.

Review the patient’s medical history and clinical course

This should include:

Relevant preadmission diagnoses.
Date/reason of hospital admission.
Notable events/problems prior to coming to the ICU.
Date/reason for transfer to the ICU.
Notable events/problems after coming to the ICU.

Make an assessment of the patient’s prognosis

An assessment should be made to determine which of the following statements describes the patient’s current clinical condition:

The patient will die in the next 24-48 hours despite receiving maximum intensive care.
The patient will not survive to be discharged from the ICU.
The patient will not survive to be discharged from the hospital.
The patient may be able to be discharged from the hospital, but s/he is not likely to survive for more than a few days or weeks.
The patient may be able to be discharged from the hospital, but s/he is not likely to survive for more than a few weeks or months.

The determination of prognosis can be both intimidating and challenging, and should be based on the patient’s physiology, the clinicians’ expertise, institutional experiences with similar patients and relevant information in the published literature.

Identify and review patient/family specific factors that may impact the discussion and/or decision-making

These include:

The internal dynamics of the family.
The quality of the relationship between the team and the patient/family.
Medical errors or lapses in care.
Preferred decision-making style of the family.
Results of past meetings.

Formulate recommendations about the goals and plan of care

This should be based on:

The patient’s medical history, clinical course and prognosis.
Information obtained from relevant clinical and/or ancillary services.
Patient/family specific factors that may impact decision-making.

Three additional things are noted:

Treatments and interventions that are medically ineffective or inappropriate, while certainly open for discussion, should not be presented as options for care.
These recommendations are not formulated with the intention of imposing them on the family, but rather to provide a basis for an informed conversation.
There should be an overall consensus/agreement within the medical team about the goals and plans of care that will be recommended to the family.

A recommended approach for conducting the family meeting

The goal is to have a patient-focused conversation with the family about changes in goals and plan of care. The approach presented represents what expert clinical experience and published literature have identified as the elements that promote respectful conversations with families about end-of-life care.

In this approach, the family meeting actually begins with a pre-meeting conference among medical and hospital participants to ensure that everyone is on the “same page.” Once the medical team has joined the family, the first task is to establish conditions that enable a productive, uninterrupted, open and honest conversation. The actual discussion involves an initial phase, the purpose of which is to establish a connection with the family. The conversation then focuses on developing a consensus about a plan of care that is consistent with the physiological realities of the patient as well as the values/goals/life of the patient. The discussion concludes with intentional efforts to comfort and console the family.

One individual should take the lead facilitating the discussion, with the other caregivers providing moral support, observing the dynamics of the meeting and providing comments as appropriate.

PRE-MEETING CONFERENCE

Prior to the meeting:

Ensure there is agreement about the proposed changes in the goals and plan of care among those who will be participating in the meeting
Review the factors/issues that are likely to impact the discussion and/or decision-making

ESTABLISH CONDITIONS FOR A PRODUCTIVE CONVERSATION

Immediately before the start of the meeting:

Silence cell phones and pagers
Disperse the medical team throughout the room
Ensure boxes of tissue are in the room
Place a “Family Meeting in Progress” sign on the door

To begin the meeting:

Briefly describe the purpose and goal of the meeting.
Have everyone introduce themselves and note their relationship to the patient.
Express appreciation for the family’s willingness to participate in the meeting.

ESTABLISH A CONNECTION

To establish a connection with the family:

Elicit the fears, concerns and/or goals of the family.

“What is your biggest concern?

“What are you most fearful about?”

“What is most important to you right now?”

“What concerns do you have about the care we have provided?”
Ask the family to talk about the patient’s life, values and personal qualities.

“What things were important to [name of patient]?”

“What were the things s/he liked to do?”

“What made him/her unique or special or just different?”
Determine and clarify the families understanding of the medical facts.

“Although we have been speaking with you, sometimes the things we say can be confusing. Please tell me your understanding of what has happened to [name of patient]?”

Responses to the family.

When their understanding is accurate: “You are correct. [Patient’s name] came to the ICU because . . . Over the last two weeks he experienced several complications . . .” [The patient’s medical condition is restated to ensure that there is no confusion or misunderstanding on the part of the family].
When their understanding is inaccurate: “In addition to what you said, there are some other things you should know . . .”

DEVELOP A CONSENSUS

Come to an agreement with the family about the goals of care based on the patient’s current physiological status and/or the goals/values/life of the patient.
Present recommended treatment or options, consistent with the goals of care.

˚“We are at a point where I can say the chances of [name of patient] ever getting well enough to leave the hospital are extremely small. Based on what you told me about the kind of person he was and the way he lived his life, it is my sense that he might not want to be placed on ventilator, if he was unlikely to recover. What are your thoughts on that?”
˚“It is the conclusion of the medial team, after careful thought, that the chances of [name of patient] leaving the hospital and doing things he used to enjoy are very small. What do think he would say to us if he were here now?”
˚ “You mentioned earlier that he has been through a lot and that you don’t want him to suffer unnecessarily if it does not look like he will get better. I must say that transferring him to the ICU, putting him on ventilator and subjecting him to CPR does run the risk of increasing his suffering without increasing his chances of leaving the hospital. Based on that, I believe we should focus on making sure that he is comfortable and that he does not suffer. How does that sound to you?”

Obtain explicit agreement on the plan of care.
Ensure that all the voices in the family have the opportunity to be heard.
Continue to patiently discuss the issues if there is initial resistance to the recommendations of the medical team.
Without expressing frustration or anger, respectfully end the meeting if a consensus has not been developed after an hour, making plans for another meeting and/or mediation (e.g. ethics committee, palliative care team).

COMFORT, CONSOLE AND CONCLUDE

Respond to emotional reactions with empathic statements or with silence if appropriate (throughout the whole conversation).

“This must be very hard.”

“I can only imagine how scary/difficult/overwhelming this must be.”

Elicit any remaining questions or concerns.
Assure family that the medical team will not abandon them or the patient.
Ask the family to share something humorous, quirky or special about the patient.
Invite prayer (by the chaplain, a family member, their clergy person) if appropriate.
Acknowledge the difficulty of the situation and the decisions that were made.
Acknowledge specific strengths of the family.
Thank the family for meeting with the medical team.

DOCUMENTATION OF THE MEETING FOR THE MEDICAL RECORDS

Following the meeting, a note should be placed in the patient’s chart that documents the following:

Purpose/reason for the meeting.
Meeting participants.
Topics/issues that were discussed.
Decisions that were made.
Follow-up plans.

What's the evidence?

Apatira, L, Boyd, EA, Malvar, G. “Hope, truth, and preparing for death:perspectives of surrogate decision makers”. Ann Intern Med. vol. 149. 2008. pp. 861-8. (Theauthors concluded that most surrogates of critically ill patients donot view withholding prognostic information as an acceptable way tomaintain hope, in large part because timely discussions about prognosishelp families begin to prepare emotionally, existentially, andpractically for the possibility that their loved one will die.)

Back, AL, Arnold, RM, Quill, TE. “Hope for the best, and prepare for the worst”. Ann Intern Med.. vol. 138. 2003. pp. 439-43. (Theauthors suggest an approach for acknowledging and supporting thepatient’s hopes while recognizing the severity of the patient’s disease,thus enabling opportunities to discuss end-of-life issues.)

Curtis, JR, Engelberg, RA, Wenrich, MD. “Missed opportunities during familyconferences about end-of-life care in the intensive care unit”. Am JRespir Crit Care Med.. vol. 17. 2005. pp. 844-9. (Thispaper reported that physicians often miss opportunities to providesupport or information to the family during family meetings. These fellinto three categories: opportunities to listen and respond to family;opportunities to acknowledge and address emotions; and opportunities topursue key principles of medical ethics and palliative care, includingexploration of patient preferences, explanation of surrogate decisionmaking, and affirmation of non-abandonment. The most commonly missedopportunities were those to listen and respond.)

Curtis, JR, White, DB. “Practical guidance for evidence-based ICU family conferences”. Chest.. vol. 134. 2008. pp. 835-43. (This review provides practical, evidence-based guidance on how to conduct a family meeting in the ICU setting.)

DeLisser, HM. “How I conduct the family meeting to discuss the limitation oflife-sustaining interventions: a recipe for success”. Blood. vol. 116. 2010. pp. 1648-54. (Thispaper describes a practical approach for achieving an outcome from afamily meeting in which the family comes to accept that the appropriatecare has been provided to their dying loved one, while the medical teamis simultaneously released to provide care that, from their perspectiveas professional caregivers, is goal-directed and comfort-centered.)

Gay, EB, Pronovost, PJ, Bassett, RD, Nelson, JE. “The intensive care unit familymeeting: making it happen”. J Crit Care.. vol. 24. 2009. pp. 629.e1-12. (Inthis paper the authors discuss factors that may serve as barriers tofamily meetings and provide practical strategies that may be helpful inovercoming some of these barriers.)

McDonagh, JR, Elliott, TB, Engelberg, RA. “Family satisfaction with familyconferences about end-of-life care in the intensive care unit: increasedproportion of family speech is associated with increased satisfaction”. Crit Care Med. vol. 3. 2004. pp. 1484-8. (This study suggests that allowing family members more opportunity to speak during conferences may improve family satisfaction.)

Nelson, JE, Walker, AS, Luhrs, CA, Cortez, TB, Pronovost, PJ. “Family meetings madesimpler: a toolkit for the intensive care unit”. J Crit Care.. vol. 24. 2009. pp. 626.e7-14. (Theauthors describe tools they developed as prototypes to promote moresuccessful implementation of family meetings in the ICU.)

Quill, TE, Arnold, R, Back, AL. “Discussing treatment preferences with patients whowant “everything.””. Ann Intern Med. vol. 151. 2009. pp. 345-9. (Anexcellent paper that provides an approach for exploring what thepatient or family really means when they want their physicians to “doeverything.”)

Rabow, MW, Hauser, JM, Adams, J. “Supporting family caregivers at the endof life: “they don't know what they don't know””. JAMA. vol. 29. 2004. pp. 483-91. (Thepaper describes five areas of opportunity for physicians to be ofservice to family members caring for patients at the end of life. Theseinclude: promoting excellent communication with family; encouragingappropriate advance care planning and decision making; supporting homecare; demonstrating empathy for family emotions and relationships; andattending to family grief and bereavement.)

Sulmasy, DP, Snyder, L. “Substituted interests and best judgments: an integratedmodel of surrogate decision making”. JAMA. vol. 304. 2010. pp. 1946-7. (Theauthors propose a substituted interests model as a better alternativeapproach to the substituted judgment model for end-of-life decisionmaking for patients who lack capacity. Decision making under thesubstituted interests model would be individualized andpatient-centered, combining universal principles with empirical evidenceabout what individuals value and how they make decisions. This modelemphasizes authenticity (i.e. a decision true to who the person reallyis) rather than the autonomy the patient cannot exercise, and askingsurrogates to provide knowledge of patients’ authentic values andinterests (“substituted interests”) rather than guessing what thepatient would have decided. A “best judgment” about what decisionadvances the good of each patient as a unique individual follows.)

Selph, RB, Shiang, J, Engelberg, R, Curtis, JR, White, DB. “Empathy and lifesupport decisions in intensive care units”. J Gen Intern Med. vol. 23. 2008. pp. 1311-7. (Theauthors found that physicians vary considerably in the extent to whichthey express empathy to surrogates during discussions about end-of-lifecare, with no empathic statements in one-third of conferences. Further,there is an association between more empathic statements and higherfamily satisfaction with communication.)

Stapleton, RD, Engelberg, RA, Wenrich, MD, Goss, CH, Curtis, JR. “Clinician statementsand family satisfaction with family conferences in the intensive careunit”. Crit Care Med.. vol. 34. 2006. pp. 1679-85. (Thispaper suggests that clinicians in the intensive care unit may enhancethe quality of the perceived experiences of families of critically illpatients by explicitly supporting the decisions made by a family withregard to end-of-life care and by assuring them of continued care thatis focused on the patient's comfort.)

White, DB, Malvar, G, Karr, J, Lo, B, Curtis, JR. “Expanding the paradigm of thephysician’s role in surrogate decision-making: an empirically derivedframework”. Crit Care Med.. vol. 3. 2010. pp. 743-50. (Thisrecent study found that physicians most often assume a collaborativerole in end-of-life conversations by fostering a discussion thatculminates in a patient-centered physician recommendation.)

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