Meetings with families of dementia patients require planning.

BALTIMORE -- Meeting with family to plan terminal care for patients with advanced dementia takes a lot of planning and thought on the part of the clinical team to ensure that everyone involved is satisfied with the results, Ann S. Morrison, Ph.D., said at a meeting on Alzheimer's disease and related disorders sponsored by Johns Hopkins University.

"One of the important moments that is etched in memory is the family meeting, because at that point for family members, this becomes official--my mom, my dad, my brother is going to die," said Dr. Morrison, education core coordinator at the Johns Hopkins Alzheimer's Disease Research Center in Baltimore. At that point, everything changes for the family.

In preparing for a meeting with the family to discuss terminal care of a loved one, identify which staff members will attend and designate one person to take the lead. This person needs to be very familiar with the details of the case and will be the one person whom the family can contact with questions. Also, any conflicts about care between team members should also be resolved before meeting with the family.

Discuss with the family members who will be present at the meeting. "It's really best to start with a small meeting first ... [only] the primary decision-makers in the family," Dr. Morrison said. Suggest that those who will attend write down a list of questions that they have. Often, in the heat of the moment, people forget what they wanted to ask.

Selecting an appropriate space for the meeting also is important. "Having the meeting in the corner of a waiting room doesn't really work," Dr. Morrison said. Find a quiet space with a door to provide the family privacy.

In the room, arrange chairs at the same level around a table or in a circle. This can convey to the family that they are important members of the care team and help make them comfortable.

At the start of the meeting, review with the family what they know about the patient's diagnosis, treatments, and outcomes. Identify areas of uncertainty or disagreement between the family and the health care team.

"When a family conference finally begins--I can't express how important this is--that every person in that room identifies who they are and what their role is," Dr. Morrison said. This approach gives family members an idea of whom to approach with specific questions.

It's equally important for the health care team to know the family members who are present and how they are related to the patient and to one another. "It is incredibly important to establish at the meeting the hierarchical order of who gets phone calls. Establish who is the No. 1 contact," Dr. Morrison said. Often this is a spouse or adult child. Designate who will be contacted second and third.

"Take the time to understand what the family believes is happening in terms of medical care. This is an area that is absolutely rife with misunderstanding," Dr. Morrison said. Have the family members explain what they understand to be happening to the patient. Be prepared to do this repeatedly during the patient's terminal care.

Avoid using medical jargon. It's also important to avoid providing too much pathophysiologic detail unless specifically asked. Most people want a simple explanation. Also make sure that family members don't equate terminal care with no care. Speak of providing a comfortable death with dignity.

When speaking with the family, be honest but avoid dashing their hopes. "Even if they can't hope for a cure, there are a lot of things that you can hope for in terminal care," Dr. Morrison said. This could include a day without pain, a family member who lives far away being able to visit with the patient, or the patient being aware enough to enjoy a special food. "There are a lot of small, intermediary goals that families hang on to and really treasure."

Pay close attention to what family members say. Often, comments about a person's feelings get sandwiched together, and it's important to tease these out. For example, a daughter designated to halt life support might say, "Well, I guess that means my dad can't breathe. I know I'm going to make decisions that are going to kill him, but I guess that's what he would want." In a case like this, it would be important to talk about the daughter's feelings that she will be responsible for her father's death.

Try to align the clinicians' and family's views of what the goal of care should be. Stress the palliative care treatments that can be offered to make the patient comfortable. Explain that the goals of care change from cure to comfort in terminal care.

When ending the conference, repeat to the family members what they have said--using their own words--to show that the clinical team is listening. It's okay to make recommendations, but avoid presenting all options as equally reasonable. "This is one time when the family really wants your expertise and they want your experience," Dr. Morrison said. Phrases like "many families decide to" or "most people opt for" can help families feel comfortable with their decisions.

Before finishing, summarize the major points and ask again for questions. Make sure that an adequate follow-up plan is drawn up. Identify what needs to be done and who will do it. Finally, exchange contact information.

BY KERRI WACHTER

Senior Writer