Why You Need A Healthcare Advocate, And How To Prepare Them

There could come a time in anyone’s life when you are unable to speak for yourself. It can happen with aging, and the risk of stroke, cognitive impairment, accident or other cause. When a person has appointed someone to act on their behalf for medical decisions, that person must step up and speak up for the one who has lost that ability.

The appointed person is usually called an agent on the individual’s health care directive, their healthcare proxy or healthcare power of attorney. Appointing this individual may seem like a small detail in one’s estate plan. But it can become a matter of enormous significance down the road.

Case study

Consider the case of Melvin, an 86 year old man who had fallen, suffered a head injury and was hospitalized for a week. His wife, Angie was a somewhat timid person, though she was the appointed healthcare agent. It seemed natural to Melvin when the couple did their estate plan to appoint his wife for this role. She knew and understood his wishes. What was missing was her ability to stand up for Melvin when the treating doctors and others wanted to discharge him from the hospital. It was their decision, they told Angie, that he should go to a nursing home for rehab. She knew Melvin would object, but he was still confused and unable to understand what was going on after the serious blow to his head. She meekly went along with the plan and was very unhappy about it. Fortunately, Melvin’s daughter, Yvonne, had worked in healthcare and she understood that alternatives to a nursing home existed. She got involved just before Melvin was to be discharged.

Angie and Yvonne had sought advice at AgingParents.com, where they could ask their questions about what was “legal” from their perspectives. Did they have the legal right to say “no” to a nursing home rather than try to arrange rehab at home? Yes. They got advice that Medicare would likely cover home health visits from a licensed nurse, a physical and speech therapist for at least a short time following Melvin’s hospitalization. Did they have a right to ask the treating doctor to order home health care from a licensed agency in Melvin’s area instead of sending him to a nursing home? Yes. The healthcare directive allowed Angie to make any and all healthcare decisions when Melvin could not understand what choices existed. Most healthcare directives are broadly drawn and the agent is not limited unless it is specified in the document they signed.

Melvin went home with Angie, and Yvonne stayed a few days to help. It took about a week to get the home health care visits arranged with the agency. A registered nurse came first and assessed Melvin. He determined that Melvin indeed was appropriate for physical, speech and occupational therapies. Melvin received them and at last check, he was making very good progress in his recovery.

If Yvonne had not been available, or if the couple had no children, what then? Melvin would have had to go where he never wanted to be, and would not have been able to find out if he had any other choice in the decision. Angie would have gone along, felt guilty and experienced a load of unnecessary stress.

What should a person do in choosing the right healthcare agent?

Understand that healthcare advocacy takes effort

Asserting another person’s rights in the healthcare system is no small task. The system seems to operate as if those in control, other than the patient, have ultimate authority on all decisions. And many people, intimidated by doctors and the medical system, with its own language, do not stand up so well when confrontation may be needed. When you are doing your own estate plan, or reviewing it, choose your agents wisely.

What should you look for in appointing your own healthcare advocate?

First, it is wise to choose someone younger than yourself. No one likes to think about getting old and losing independence but that is the risk if you appoint your same-age best friend to do this for you. You may have a partner or spouse who is also near your age. They could become impaired at the same time you are. The risk of aging is that we can’t predict how it’s going to go for anyone.

Second, it makes good sense to pick someone who is not too shy to ask questions and who can be decisive. Angie, in this case was not a good choice for Melvin because she shrank away from asserting his wishes when the doctors told her that they had decided to send him to a nursing home for rehab. His needs were met well at home with home health care. That was just what he wanted but could not say at the time of discharge. Your agent has a right to say “no” to what you don’t want.

Third, choose a good listener who respects your wishes. The appointed person for you should be willing to hear you out as to what you would or would not want for your healthcare, should you lose the ability to communicate. You and the appointed person should both be clear about when to advocate and what to advocate for on your behalf. This can be emotional, particularly near the end of life. That’s when it may be needed most.

Preparing your advocate

The responsibility to ensure that your appointee knows your wishes is on you. These can be difficult conversations, as we must all acknowledge that we could become infirm and unable to speak. Anyone could need advocacy. Make your wants known. Put them down on the health care directive in detail. There is a free downloadable Toolkit for Health Care Advance Planning available from the American Bar Association to help you. Among other things, it has a quiz in it to give to the appointed person so you can see if they really do get what you want. On a personal level, I gave it to both of my adult kids and they did pretty well. It offered the opportunity to clear up a few unclear points. Created by the ABA Commission on Law and Aging, it my view, it’s worth getting.