My Family Can’t Agree About End-of-Life Decisions for My Parent. Everyone Is Angry

Lower the temperature

When people are full of anger, they tend to listen poorly, misinterpret what’s being said and often react strongly before fully processing the information. What might have been a relatively respectful debate about honest disagreements under less emotional conditions can quickly escalate into a shouting match. It’s simply not possible to forge family consensus about what’s best for an incapacitated parent when rage prevails, feelings are hurt and damage has been done to family relationships. 

To have fewer heated family discussions, the temperature must be lowered. But how? Ideally, an outside facilitator — such as a trusted family friend, religious leader, a health care or social service professional, elder law attorney or eldercare mediator — will present a framework for decision-making to the group that acknowledges the challenges and the need for everyone’s forbearance to create mutual understanding.

I recommend that this facilitator schedule a family meeting and then calmly make the following points to all in attendance:

• By not making their wishes known, the parent has put other family members in a difficult position to make decisions on their behalf. That is a weighty responsibility that you must try to carry as well as you can.
• Because the decision is a matter of life and death for the parent, it is understandable that emotions are running high. Everyone wants to do the right thing for the parent. We all need to show compassion toward one another. You are tackling this at a time when you are grieving for how dementia has robbed the parent of their faculties.
• You are not likely to fully agree with one another during this discussion or even at its conclusion. Still, it is important to respect each other’s opinions even if you disagree with them. How you treat each other during this discussion will affect your relationships with one another for the rest of your lives.

Search for values

Following this call for calm, the facilitator should suggest basing any family decision about the parent’s end-of-life care on evidence of the moral or religious values that the parent has demonstrated throughout their lives — not the family members’ firmly held moral or religious imperatives.

Such evidence could include views that the parent voiced, letters or email they wrote or decisions they might have made for their own parents. Questions for the group to consider are: Would our parent really want everything done to keep them alive? Or would they have declined specific treatments, such as chest compressions or intubation, in the event of a medical emergency? As they’ve aged, have they become more fearful of dying or suffering? 

Hopefully, the evidence culled by family members will form an overall impression of the parent’s preferences. That impression should then provide parameters that family members can use in making necessary medical decisions. If the evidence leads in different directions at different points during the parent’s life, the most recent evidence, even from the very early stages of dementia, should then take precedence.  

If there is no evidence of the parent ever expressing wishes about end-of-life decisions, family members may need to consider the parent’s more general attitudes. Did they lean religiously toward believing in the exercise of free will or leaving all matters in God’s hands to take their course? Would they have considered living as long and well as possible, even in an impaired state, as a moral right or as a burden to their family members? 

Not all family relationships may be equal

Without a parent’s advance directive and the selection of a power of attorney, health care professionals will use a hierarchy of relationships to determine who has decision-making power. A medical team will look first to a parent’s legal spouse for direction. If there is no spouse, the team will turn to their adult children. A parent’s siblings will have less, if any, legal standing. In-laws, such as their adult children’s spouses, will be accorded no say.

More from Barry Jacobs

I Can’t Talk to My Ill Spouse Anymore. How Can I Still Find Emotional Support?
My Dad’s Health Crises Are Wreaking Havoc on My Life. I’m in Mourning
My Family Ignores That I Need Help With Dad's Caregiving
My Mom Is Dying, and I Am Overwhelmed
Uses and abuses of caregiver silence?

Family members should keep in mind this hierarchy. A parent’s partner — even a second spouse/stepparent whom the adult children from the first marriage mistrust — will be regarded by the medical team as the family’s primary contact and decision-maker. I believe the spouse should represent the consensus that has emerged from the family meetings. However, if the family sifts through all evidence of what the parent might want and is still bitterly divided, the spouse will proceed with what they think is best. The adult children will have no recourse.

If there is no spouse and only adult children, the medical team will look to them to come together as a cohesive unit to represent their parent. That will place a greater onus on the children to work together with grace. The more divided the family, the more firmly the outside facilitator may need to act as a referee.

This may all sound excruciating, but a hoped-for consensus is often found that accurately reflects who the parent was before they developed advanced dementia. Despite all the rancor, those strained family relationships can also heal through this process.