"I'm wearing my fighting clothes," the woman remarked to me as she watched her cousin walk towards our designated meeting place from the opposite end of the hallway. We were about to hold a family meeting for Angela, a 68 year old woman who had unfortunately been brought to the hospital one week earlier for a big stroke. Angela was not making eye contact with nor engaging with her family nor was she interacting much with her environment except to occasionally groan if uncomfortable. The palliative care team (read Post 44: When a Palliative Care Consult Could Help - Eight Hospital Scenarios) had been asked to mediate a family meeting because family members had very different ideas on how Angela should be medically treated.
The neurology team in the hospital had planned on inserting a long-term feeding tube into Angela's stomach and then discharge her to a facility to attempt physical therapy. They presumed long term living plans would be made at the facility, whether the plans be family members deciding to take in Angela while providing physical care and cleaning day and night or Angela ending up living in a nursing home. The neurology team's discharge plans were halted when they met with resistance and anger from several family members.
Half of the family exclaimed, "She would never want a feeding tube! She would never want to rely on strangers to feed her and clean her and bathe her! She is such a proud, independent person and would never want to live this way." The other half of the family quickly responded, "Family is the most important to her, and she is a fighter! Go ahead with the feeding tube! We have to give her a chance to come back to us."
"Palliative care," the neurology team asked, "can you please meet with the family and discuss goals of care (read Post 54: Why Should I Care about My "Goals of Care?)?" Please find out how the family wants us to proceed! FYI, security has been called twice already to intervene due to family dynamics."
Family meetings are usually an area of expertise for the palliative care specialist, and I as a palliative care physician provide suggestions on how family members can initiate their own family meeting when a loved one is sick in the hospital (read Post 53: 9 Steps to Holding a Family Meeting When a Loved One is in the Hospital). I mention in that post that if you were the family member in charge of organizing a family meeting and anticipating trouble that it might be a good idea to arrange for a third party family meeting moderator - such as a palliative care specialist, ethics team member, hospital social worker, hospital chaplain, or the family's own spiritual advisor - to sit in.
The following are three tips to consider if you yourself ended up moderating a tense family meeting:
1. Establish ground rules at the beginning of the meeting. If possible, consider designating a neutral person to help enforce these ground rules.
"We are all here because we love Mom. I know we have our histories with each other, but the meeting is all about Mom. So I'm laying out these rules before we start the meeting. Number one, no profanity or threats will be tolerated. Any person who breaks this rule will have to step out of the meeting for a cool off if necessary. Number two, one person speaks at a time. Any person who insists on interrupting will have to step out of the meeting for a cool off if necessary."
If you had a designated neutral person to help you enforce ground rules, one of their jobs might be to stand up and guide a highly emotional family member outside the room, perhaps accompany them as they cool down, before guiding the family member back into the room.
2. Redirect the conversation to your loved one's medical issues as often as you need to. Everyone will bring to the family meeting their own personal agendas. Sometimes family members with past history may try to personally label or verbally attack each other, distracting all from the purpose of the meeting.
"He's being difficult again" could be redirected to "We are here to focus on what's going on with Mom. We are here to talk about Mom not being able to eat on her own or take care of herself. We need to talk about what's going to happen to Mom."
The focus should remain on the best interests of the loved one who is sick rather than everyone else's individual agendas. The family meeting moderator should bring the conversation back to the loved one's situation every time a family member talks about their own preferences or experiences.
3. Redirect the focus to your loved one's perspective as often as you need to. Encourage family input on your loved one's quality of life prior to getting sick, and share what the healthcare providers think quality of life will realistically be like in the future.
"What would Mom say about her situation? If she could wake up for fifteen minutes and have her condition completely explained to her, knowing she would go back to the way she is now after those fifteen minutes, what would Mom say?"
Ask your family members how they think your loved one would answer any of the following questions:
What gives me purpose in life?
What gives me joy in life?
What is most important to me?
What do I hope for? What do I pray for?
What is the one thing I need to be able to do to make life worth living?
What would not be an acceptable quality of life or burden?
If this is the best life can get, would I stay the course?
At what point would I say, "Please let me go?"
Sometimes, if different family members have differing opinions on how a loved one's goals can be achieved, time limited trials of certain medical treatments could be agreed upon with the understanding that a loved one's quality of life and health condition would be re-discussed after a designated time. "We'll keeping asking for IV fluids for as long as it helps Mom be more alert and interact with us. If she becomes somnolent again and the IV fluids are not helping her anymore, we'll stop them. We promised Dad that we would visit with Mom every day and if we thought Mom were suffering in any way that we would not prolong her condition."
In the case of Angela, all family members agreed that being with family, positive energy, and independence were most important to her. The palliative team had gathered medical information from all the healthcare teams, and we shared with everyone what the neurology specialists had said, "There is a possibility of improved awareness and her having some interaction with family in time. This may take months. Possibly, though less likely, she will have some strength return to the left arm and leg and the muscles for speech. Therefore, she will likely need help long term for all care - feeding, bathing, dressing, cleaning after bowel movements and changing diapers. She might or might not regain the ability to swallow on her own."
Though some family members were vocal about Angela being a highly independent and active person, all agreed that if Angela had 15 minutes to have her say, she would tell them, "Family is my life. Keep me with family. As long as I can be with family, I have quality. I may not be able to do things for myself, but I will find a way to find meaning in all of this if I can be with my family."
Keeping in mind the importance of family and positive energy for Angela, the family agreed to proceed with feeding tube placement with the hope that Angela would in time be able to gain mental alertness and interact and laugh with them. The family members who had been especially concerned about Angela's loss of independence and quality of life insisted that Angela would find no quality of life nor improvement in a facility. "We will agree to all of this only if you let us take her to our home. We can do physical therapy at home. We just agreed that Mom needs to be with family more than anything. Well, then let's do that, especially if we're going to put a feeding tube in her and prolong her life the way it is. We'll have to come up with a rotating schedule of who is going to care for her and when."
Sometimes family members may have to set aside their egos or personal agendas and agree to disagree. Sometimes family meetings require multiple conversations - perhaps with different moderators - before a path forward can be agreed upon. It is never easy talking about life altering decisions for a loved one who is sick. I hope suggestions in Post 53 and in this post provide assistance if/when it comes time for you to hold a family meeting.