Autonomy vs. Safety

As a senior’s health begins to fail, there comes a time when a conflict arises between the parent’s interests and the children’s interests when it comes to safety and autonomy. There were polls done among parents and their children and the overwhelming results are that the parent wants to keep their autonomy and the kids what to guarantee the parent’s safety. How are these at odds?

The problem is that you can’t have both. To a large extent they can be mutually exclusive interests. So who should prevail? Even if the parent may not have competency to make financial decisions or make health care decisions for themselves, they are still able to clearly communicate their wants and desires. They still are emotional beings and I believe that the parent’s mental health needs to be an important factor in determining the safety requirements and concessions that are thrust upon the parent.

Even though it may be difficult for children to accept, shouldn’t there be a balance between maintaining as much of the parent’s autonomy and still keeping the parent safe? Perhaps let them fail in caring for themselves just don’t let them get hit by a bus! Sometimes a parent or elderly person is much more accepting of the fact that they need to let go of a bit of their autonomy if they are able to come to the decision on their own, rather than having a third party force the issue.

What are the thoughts of my readers? At what point must the children step in and demand freedom be taken away from the parent to assure their safety? I want to invite you to tell me what you think, and to share your experiences from your own family or friends.

Armand Giannamore

The essential issue is whether or not the elderly person is capable of making the decision which affects safety. If capable, then the elderly person’s decision must be honored, regardless of how it affects safety, no different than honoring the decision of any other adult. If the elderly person isn’t capable of making the decision, then a surrogate should step in & make the decision based, as much as possible, on what the elderly person would do if they could decide for themselves. In no case should the elderly person’s values be subordinated to what others think is best, based on other’s values.

The problem then distills down to assessing the elderly person’s decision making capability; Not an easy thing. Family members might say that the elderly person is not making good decisions. But such assessments are probably based on outcomes, or the values of family members, & therefore probably wrong. Medical professionals might base an assessment on cues from the family, & therefore also probably wrong. Family members who think that an elderly person is not decisionally capable, should advocate for a valid asessment such as the Assessment of Capacity for Everyday Decision-making (ACED).
(Ref. http://www.uphs.upenn.edu/adc/pdf/ACED%20Packet_final.pdf)
- eldercareready
  
  As you indicated, assessing the decision making capabilities of the elder is not easy. I have found seniors totally incapable of understanding money, finances, and what assets they own but are very capable of deciding how and under what conditions they want to live. It’s not an all or nothing determination.
  
   If the elder is in jeopardy of harming himself or herself, or others, some action must be taken. The law most likely requires some action. But determining what is the level of jeopardy requiring action is the question and the discussion I am trying to generate.
  
  Consider an elder that is a potential fall risk. In order to protect the elder from a fall, a 24/7 caregiver can be used to hold a belt placed around the elder’s waist (which is a common technique), but isn’t this possibly a very intrusive remedy for the perceived risk. The elder may not be able to handle having someone holding him or her, or being within one foot of him or her, every minute of the day. There is potentially a huge psychological effect on the elder. He or she loses independence in exchange for safety.
  
   The extreme cases are easy to handle. If mom threatens to kill herself with a knife in her hand, that is clearly a big problem. But in the gray area it is quite murky.
  
   I encourage discussions with the elder if they are capable of comprehending the risks and solutions. If not, then I do believe the psychological issues must be part of the solution formula when balancing safety against independence.
Maria

Our family is facing this issue at this moment. I am happy to have found this article and am in need of input in order to guide our family. Aren’t both, autonomy and safety, equally important? And isn’t there a significant difference between some capacity and full capacity? Our situation involves a parent who lives alone, who has significant dementia and alcoholism, and who had a very large heart attack 3 days ago. His heart has been reduced to 50% effectiveness, and he continues to lie to himself and others about how much he drinks and that he is able to take his own meds correctly. Two doctors and a Social Worker believe he is not safe to live alone, and that his dementia is severe. One Case Worker asked him, “where do you want to live?” and he said, “at home.” Therefore she says we must let him. I don’t agree. I want a lot of things too, but I don’t get them all. We’re not planning on forcing him against his will to do anything. But we are planning to continue to work with him in order to convince him that he is not safe living alone. We will move him in with us, move him to independent living with assistance, or get someone to live with him, but living alone can no longer be an option. He will die quickly if he returns home alone. We have spent a great deal of time trying to assist him as he lived alone and this has not worked. He has used alcohol heavily between our visits, he has overdosed on meds and also gone days without taking meds, even though we call or visit multiple days per week. He was lucky to live through the heart attack he had, but we are very afraid his luck will not work out next time. He will also be on 3 to 4 additional new cardiac meds to add to his current 5 meds. The Cardiologist told him if he doesn’t take these meds correctly, he will have another heart attack. He doesn’t even remember having the heart attack he had 3 days ago. We are scared for him, no doubt, but he is not fully capable of understanding his situation. Just because he can articulate a want or desire, does not equal an ability to make decisions on his behalf. Please let me know what thoughts any of you have on this situation. Thank you for your kind help.
- eldercareready
  
  Maria
  Clearly this is a very difficult situation but I believe that the overriding issue is whether dad is in jeopardy of hurting himself or others. If so, then in my opinion (not giving legal advice here!) I think you need to take action notwithstanding what he or the family wants. You should check with an attorney that deals with conservatorship proceedings (may be called guardianships in other parts of the country). It would be tragic if he were to cause a crisis due to his dementia. Innocent people could also be hurt by his actions. The doctors and the social worker have already given you their opinion and they need to be taken seriously. Based on how you presented the facts to me, I also believe that the case worker may not be correct in her assessment. Hope that helps…
Judy Dunlea Stewart

My mom is 92, she has 24/7 caregiving which is costing approx $120,000 a year with the new overtime laws in Calif. She will run out of money in a year. My sis and I found a wonderful assisted living place for her close to one of us. She refuses to go. The assisted living place does not want her after meeting her, due to her toxic attitude. She has threatened to call police on us, wants us out of her house and never to come around anymore. We are emotional wrecks. She had to go to emergency yesterday for a panic attack. Our plan is to back off for a few months and then bring in a geriatric case manager. At this point, I do not feel that I even have a mom anymore. She has pretty much sucked all the love out of me.