This week’s blog continues the discussion of Legal Issues when someone has Dementia. The introductory installment (April 30, 2015) put forth the issue of “Who can speak for someone with dementia?” The May 14, 2015 installment discussed the situation where the person with dementia has Advance Directives in place. The May 21, 2015 installment discussed the legal issues in determining whether a dementia sufferer can choose to have new Advance Directives prepared.
For people whose dementia hasn’t yet taken away their ability to make decisions about Advance Directives, the next questions are which Advance Directives to prepare and how to prepare them.
Before we get confused, let’s set out our terminology.
Before the dementia takes away the principal’s ability to make decisions, the principal’s support (family, friends, social workers, etc.) should encourage him or her to prepare and execute (fancy legal word for signing one’s name) a Power of Attorney for Health Care. (The Power of Attorney for Health Care is often called something different in states other than Ohio, where I practice. I often hear the terms Health Care Surrogate or Health Care Proxy. I am not an expert on the law in other states, I think all of these terms mean roughly the same thing.)The Power of Attorney for Health Care is, as the name implies, a document appointing an agent to make decisions about the principal’s health care. (I’ll try to call the document a Health Care POA for the rest of this discussion because, frankly, “Power of Attorney for Health Care” sounds stuffy.)
The Health Care POA is about the skin and contents. (Thanks to Dan Keenan, a friend of mine who brokers health and disability insurance, for the description of “skin and contents.”) In my opinion, the Health Care POA is the most important of the advance directives. No matter whether the principal is rich or is poor, he or she has his or her health. The principal may be in good health or in poor health, but the decisions about his or her health are very important.
Because the principal’s health is important, he or she must choose an agent carefully. Because the principal (in this discussion, at least) already has dementia, the best choice for health care agent (in my opinion) is the principal’s family member who is acting as caregiver or as care “quarterback.” (If the principal doesn’t need hands-on care on a daily basis, there is no caregiver, but, because of the dementia, a family member probably tags along on doctor visits and maybe helps manage medicine. That person is the care “quarterback.” If the principal does need hands-on care on a daily or frequent basis, but someone other than a family member is providing the hands-on care, the family member most involved with the caregiver is the care “quarterback.”)
The health care agent should be the person who is most involved in the principal’s care and, at the same time, emotionally connected to the principal. Someone connected to the principal’s care but not connected emotionally is more likely to make appropriate clinical decisions but is not likely to be able to make the decisions in a way that the principal himself or herself would have made. Someone connected to the principal in an emotional way but not involved in the principal’s care would probably have the necessary empathy to make the decisions like the principal would make them, but would lack the necessary information and experience to understand the principal’s health situation. (Note: The hands-on caregiver is far more likely to be a woman than a man. The care “quarterback” is also more likely to be a woman than a man, but it’s somewhat closer to even than for hands-on caregivers.)
If the principal isn’t yet receiving care (because the dementia isn’t yet that bad,) I suggest that the principal name his or her spouse as the agent, if the spouse is still able to make the necessary decisions. If there is no spouse, or if the spouse is unable to make these important decisions, the principal should name as agent the child most likely to become caregiver or care “quarterback.”
The principal should also name successor agents. The first-named agent might become unavailable through illness, relocation, or (sadly) death. The successor agents should be the children in order of their likelihood of becoming caregiver or care “quarterback.”
Also, I do not suggest naming more than one agent at a time. One person can reach a decision. Two or more people are far more likely to reach an impasse. In the event of an impasse, no care decisions are made until the health care need reaches crisis level. (Successor agents still comply with my “one at a time” suggestion. A successor takes over if the agent appointed before them is not able to serve.)
Not everyone agrees with my suggestion to name one’s likely caregiver as agent in the Health Care POA. For example, , suggests that the principal should name as agent the person most likely to follow through on the principal’s express wishes. (I learned Judge Stormer’s position on whom to appoint when she and I spoke on this topic at a public outreach event for in October 2013.) Most notably in the context of a dementia sufferer, those wishes might include never going to a nursing home. Holding someone to the promise that the principal will never be moved into a nursing home is incredibly difficult. It may seem an easy promise to keep before dementia gets too bad. As the disease progresses, or as other afflictions appear, that promise can become an overwhelming burden for the agent/caregiver. I greatly respect Judge Stormer, but I disagree with her on this suggestion.
Finally, a Health Care POA gives an agent the power to make health care decisions for the principal. It does not take away the principal’s ability to make decisions for himself or herself. The agent is the principal’s backup, not the principal’s replacement. The health care professionals involved in a certain may determine that the principal is not so far out of touch with himself or herself that his or her wishes should be ignored.
The principal’s disagreement with the agent’s decision can put the health care professional in a difficult situation. By the nature of the Health Care POA, everything over which the Health Care agent has authority involves, at some point, the principal’s body. That means that the principal is present when the agent’s instructions are carried out. Unless unconscious, the principal has the ability to resist the agent’s wishes. That resistance can be as simple as saying “no” or as violent as biting, hitting, and kicking. Just because the Health Care agent orders something for the principal doesn’t necessarily mean that it will be carried out.
To sum up for this week, if a person with mild dementia is still able to make decisions about who can make his or her health care decisions, then
(Sorry that I didn’t get this out on Thursday night as I’ve done in the past. It’s been a crazy few weeks.)