A reader wrote in to ‘Since you asked…’ on Salon last month about her 90 year old mother; I’m going to summarise her letter, because it’s a bit long. The letter writer’s mother has some health conditions and is living independently with a little bit of assistance from the family, but has recently been diagnosed with a new medical issue. A specialist wants the mother to undergo some testing to learn more, and the mother wants to decline because it would be invasive and uncomfortable. Letter writer supports her mother’s choice and doesn’t want to pressure her into getting tests she does not want, but her brother, who lives far away and doesn’t spend much time with his mother, doesn’t. The letter writer asks ‘am I doing the right thing?’
This is a problem that comes up quite frequently. There’s an idea that people deserve autonomy…up to a certain point, and then the people around them should make decisions for them. There’s also an idea that people who are capable of making decisions for themselves should be pressured if the people around them think they are the ‘wrong’ decisions. Reading between the lines of the letter, it’s clear to me that the mother is making an informed choice and she has solid reasons for it. In my opinion, her daughter is doing the right thing: She’s respecting the choices her mother wants to make for her medical care.
Dear Concerned Daughter,
Yes, I think you are doing the right thing. Your mom has the right to make her own decisions.
There may be room for compromise. It would be nice to know more about what this new serious condition is. It may be that in two or three weeks, or a couple of months, things will change. But your mother has the right to decide how much poking and prodding from doctors she will endure.
What do you say to your brother? Well, I would say two things. I would say, Let’s just wait and see; maybe she will change her mind, and maybe the situation will become clearer. And I would also say, Why don’t you come here now and spend some time with her?
She doesn’t have forever. This opportunity to be with her will not return. Now is the best time there is. He should come and spend some time with her. That’s what I would say to him.
It’s not right to force people to undergo medical procedures they don’t want to undergo. As long as people can understand the risks, they are free to refuse. (emphasis mine)
His response makes a number of key points. The most important is stated right at the top, which is critical. I like that he also notes that declining testing now doesn’t spell the end of the road or close any doors; if the mother later decides she does want testing or wants to explore options, she can. And while he notes ‘maybe she will change her mind,’ he does not suggest that she should be pressured and forced into doing so. Overall, the letter emphasises respect for the mother’s autonomy, which is a rare thing to see when it comes to talking about how people interact with older adults.
And I think the advice about what to say to the brother is very sound. Reading the original letter, I wondered if the brother was pressuring for more testing because he feels bad about not being more directly involved and believes that testing will buy his mother more time. It is very difficult to be living in a distant location while an older family member is not doing well; it can create feelings of frustration and helplessness and guilt, because you want to be more involved but you are unable to be.
If he can make arrangements to do so, making a visit to spend some time with his mother might be a good idea, not least because he will have an opportunity to interact with her and see that she is making an informed choice about her medical care. That might not be an option for him; we don’t know the circumstances, but the brother needs to separate out his feelings in this case, because his mother deserves autonomy, and should be supported in her decisionmaking.