Moving my mother through three different states and their related legislation regarding advance health care directives in the last two years has woken me up to the many obstructions that can keep people’s lives extended against their will when emergencies arise.
If you’re a dementia caregiver, it’s a great idea to research this on your own as soon as possible in detail, and discuss it with a primary physician ideally a geriatric specialist, since they deal with these issues all the time.
If you look at the US as a whole, in most cases it’s extremely difficult to ensure that your loved one’s preferences to not receive heroic and life-extending measures by EMTs or other emergency medical staff will be honored. This is especially true if s/he is not wearing a DNR bracelet at the time the professionals arrive on the scene, whether or not you can produce supporting paperwork.
In some states, the official DNR (do not resuscitate) bracelet will still not be honored if the attending professionals do not see fit, and this can be for various reasons, which differs in every state and each hospital within states.
In our current state, Wisconsin, my mother’s advance directives and her DNR bracelet will not work because she refuses to wear it. One of her current disease and medication side effects includes paranoia, so you can probably imagine how she feels about a new bracelet on her arm announcing her name, address, DOB, physician, and the “Do Not Resuscitate” statement.
On a good day, she thinks it’s incredibly tacky and an unnecessary display of her personal information (it is!). On lesser days, she doesn’t remember why it’s there, and will demand that it’s removed, or will cut it off herself.
This is the same woman who has drilled into me since I was a teenager, “Never let them put me on machines and make me live like a vegetable. No life support at all if I’m already old and losing my mind.”
Knowing that there are many older people who probably feel awkward about wearing these bracelets for so many reasons, I had a long talk with the social worker at one of the best hospitals in our area. She shared my frustration and concerns, and said that most families and assisted living facilities don’t fully understand how the law works and that the wishes will not be honored if the bracelet has been removed for any reason. Many families and care providers think that they can tape the order to the person’s bedroom wall, keep it in a wallet, or even try to slip the bracelet on moments before an ambulance arrives. In my state, and in most others, none of that is guaranteed to work, and in most cases, it usually doesn’t.
There are some great reasons for this, including protecting patients and health care providers from fraud, terrible mistakes, and lawsuits down the road. But at the same time, it makes it incredibly difficult to have peace of mind as a caregiver that you will be able to honor your parent’s wishes when the time may come.
I haven’t found a good solution to my mother’s situation yet. Her memory care nurse suggested a fancier decorative bracelet, and the director suggested that she might wear it on her ankle. (Hmm… Mom already describes herself as an “inmate”.) But knowing Carol Jean, she won’t be fooled by pretty packaging. She’ll read the fine print, and she’ll know this has not been part of her life before, so what’s going on with them tagging me with this thing now?
I suppose when her dementia progresses it won’t be as big of an issue. But as the person she’s entrusted to assert her rights and desires for health care, I feel stuck at the moment. If anything were to happen to her today or in the near future, she would not be protected from short-term life support measures, though all the paperwork she’s completed over the years with me and her doctors WOULD have a very strong effect on keeping her off life support longer-term.
I’m curious to hear how other caregivers have approached this issue, especially if your situation includes a person who does not want to wear a DNR bracelet – would love your feedback and ideas.