Care Manager’s Role in Family Meetings With Death and Dying

            In a pre- diagnosis period the threat of a life-threatening illness produces considerable distress for family members caring for their possibly dying loved one. After the diagnosis, in the acute phase of dying they need family meeting even more.

 Family meetings can be used to establish a safe environment where plans, decisions, conflicts and grief issues can be discussed honestly and openly. The overall goal of family meetings in end of life care is to enhance family support and functioning.  The care manager should promote cohesiveness in the family meeting to help the family:

             Reduce conflict

·       Co-operate and communicate among family members in decision making”

·       Share thoughts and feelings with each other.

·       Make plans for the united family support of the dying person

Integral to this process is the sharing together of family grief, “while the family’s strengths and successful ways of coping together are affirmed.

Who should attend?

            Patient, family members, the case manager and other health care professionals whose expertise is needed for the matter at hand should be present. Whenever possible or practical, the meetings should include the sick person. If he/she is unable to attend let him/ her know who has been invited and exactly what you plan to discuss. If he/she is unable to attend, report back to him/her immediately about the meeting. This keeps the locus of control with the patient where it belongs. It is after all their life being discussed. If the sick person is unable to attend, then the person most familiar with needs of dying person should attend. An appointed spokesperson (a legal decision maker/ health care power of attorney) such should attend if the patient is unable to speak for him or herself.  There may be some cases where due to dementia or some other condition it might be appropriate to hold a meeting without the patient present. Depending on the condition, a follow up with the sick person may be appropriate. Another situation where the ill person should not be present is if the family members need to share with each other thoughts or feelings about family grief or other issues that would be to painful for the ill person to hear. In this case it would be appropriate to hold one meeting to focus on these matters only.           

Care Managers role

The care manager’s role will be facilitating the meetings, communicating information, explaining, negotiating care and having empathy and understanding. If Hospice is involved, the Hospice Medical Social Worker or Hospice Discharge Planner at the hospital will lead the meeting. A highly dysfunctional family will need a mediator or someone with mediation skills.Hospice can often supply a member of their team to do this.

            It’s important to realize that discussions involving end of life decisions can take often involve numerous family members in a series of meetings spaced over time. Setting an agenda for the meeting and letting all parties know ahead of time what you plan to discuss is an important part of the process. Research on improving care planning with older people and their families show that a family meeting is unsatisfactory when they go into it with an unclear agenda. The patient, the staff and the family members must all be clear on the meeting’s purpose. This requires conveying and gathering information with the patient, adjusting expectations of all parties, and resolving any differences. For example information from meetings with other professionals or results from medical tests may be needed. When the meetings begin, it is good for the case manager to review the meeting goals and to clarify if specific decisions need to be made. Before the meeting ends the team checks back with the participants and each other, to debrief and identify any unmet needs. The care manager should summarize the decisions made in the meeting and circulate those to all who attended the meeting so everyone know what was agreed to at the meeting and what role, they individually agreed to take and what they agreed to do.