Being a health care decision maker can bring an emotional toll

(Aging Untold) — Being a health care decision maker for a loved one ranks among the most difficult responsibilities in caregiving.

The role brings guilt, pressure from family members and the constant fear of making the wrong choice, according to the Aging Untold experts.

“One of the reasons it weighs so heavily on people is the fear of the unknown,” Amy O’Rourke, an aging expert, said. “They don’t really know the kind of decisions that they’re going to be making. It’s not just turning off the machine that’s the hard part. It’s, do I hire hospice? Do I bring in home care? Do I pay money? Do I sell the house to pay for care?”

O’Rourke recommended sitting down with the person before a crisis occurs to discuss hypothetical scenarios.

“How would you feel if you moved into assisted living? How would you feel if I brought in home care? Get them to talk to you so when you do have to make those decisions, you know you’re making them from their vantage point,” she said.

The physical and emotional toll on decision makers

Dr. Rhea Rogers, a board-certified physician, explained the medical impact of serving in this role.

“It’s what we call in medicine an allostatic load. You’ve got wear and tear on you all day long, so it creates chronic stress and it takes a toll on the body,” she said. “What happens if you never got a chance to reset.”

Rogers compared the effect to a cell phone that never gets recharged.

“The stress is just draining it all day long,” she said.

Katherine Ambrose, an aging-well coach, noted the toll extends beyond the immediate caregiving.

“It’s not just the caregiving, but their other key relationships, their career, their job, their future, their retirement. All these things could be creating a lot of extra pressure as well,” she said.

Dealing with judgment from family members

One of the most painful aspects of the role is facing criticism from other family members who are not directly involved in day-to-day care.

“You’re trying to make decisions and you’re being judged on every decision you’re making,” said Sam Cradduck, a gerontologist. “There’s always somebody that’s sitting back thinking that you’re doing it wrong or telling you that you’re doing it wrong and vocalizing what their opinion is.”

Cradduck emphasized that decision makers are simultaneously dealing with their own grief while trying to honor the wishes of their loved one.

“You’re dealing with your own grief. You’re losing somebody that you love. And oftentimes you have siblings and maybe your children, if there’s adult grandchildren in the mix and you’re the child, that are literally telling you what you’re doing is wrong because hope is in the picture,” she said.

Cradduck addressed family members who are not in the decision-making role directly.

“If you’re a sibling, if you’re a family member on the outside of that decision, please support that person. If you’ve got an opinion, share it, but don’t enforce it like you’re the one that has that right,” she said.

Understanding anticipatory grief and anger

Grief manifests before a loved one passes away, complicating family dynamics.

“When you’re a caregiver like that, you are mourning someone that’s still there,” Ambrose said. “I think that crying is really helpful because sometimes people feel an emotional disconnect. And that’s just the brain’s response to the trauma. That’s kind of a healthy response as well that helps you cope.”

Cradduck explained that anger from other family members often stems from their own grief process.

“Anger is a stage of grief. And lots of times we’ll see the anger stage really prevalent before the loss, before the sadness. It’s, I’m angry I’m losing this person. And who am I going to be angry at? The person that’s making the decisions that could lead to that loss a little quicker,” she said.

Ambrose added that the anger can also come from guilt or shame, particularly from long-distance family members who feel they are not doing enough.

“Sometimes too, it’s that old sibling rivalry where you’re kind of judging the younger or the older person or their motives. And that’s really a very painful thing for people to deal with,” she said.

Considering alternatives to family decision makers

Cradduck raised the question of whether family members should serve in this role at all.

“This is why I’m truly an advocate of not using your family in that position. There’s already too many emotions going on,” she said.

Cradduck suggested appointing someone outside the immediate family, such as a trusted friend with medical knowledge, to make health care decisions while keeping family members involved in the conversation.

“Almost all of us have somebody that we know that works in the medical field. Almost all of us have somebody we know that has a position where they understand the dynamics from the physiological side, and they can understand the family,” Cradduck said.

She shared that she appointed a nurse friend as her medical proxy so her children can consult without bearing the full burden of decision-making.

However, O’Rourke offered a counterpoint.

“There’s other families that they would be really hurt because they can’t handle it. And I do have the wherewithal. I think what I love about this is that one size doesn’t fit all,” she said.

Choosing the right person for the role

Self-awareness is critical when deciding who should serve as a health care decision maker, the Aging Untold experts say.

“Who are you? How is your self-awareness? Are you conflict-averse? Are you passive? Are you a bully?” O’Rourke asked. “Know yourself to know what do I need to counter my own personality, temperament? Get some support.”

Ambrose cautioned that if appointing someone outside the family, careful consideration is essential.

“You’ve got to be really careful that you’re choosing the right person too, because I’ve also seen strangers not really play well with the kids,” she said. “But you don’t want to put a sweet lamb in that position.”

O’Rourke emphasized the importance of choosing someone committed for the long term.

“Be careful who you ask because you want them to stay. They’re in it for the long haul,” she said.