It is of course difficult to make healthcare decisions for ourselves, especially when it comes to planning on what to do as we begin to wind down and approach the great unknown. But some of us are tasked with making those decisions for the people we care about, when they are for whatever reason unable to do it on their own behalf. Even if your loved one sorted out their advance care planning beforehand, it is likely that it will not cover all possible medical treatments and options. So how can you best advocate for those you care about when they cannot do it for themselves?
When advance directives are available, the decision is easy enough as to follow their wishes when possible. There are two types of documents that make up advanced directives. First, your loved one may have formally named you as their healthcare representative, or proxy in power of attorney over healthcare. That means you have the legal authority to make decisions they cannot, and your responsibility is to advocate for their wishes.
The other type is a health care directive, also sometimes called a living will. This document states which specific treatments your loved one does and does not want. For instance, sometimes it will include a refusal of things like feeding tubes or CPR. Make sure that anyone providing care has a copy of these documents, and discuss your loved one’s wishes with both doctors and anyone present at the bedside.
When end of life care is being performed at home, a special medical order by a doctor may be necessary to ensure that any emergency personnel know what to do or not to do. This special order is, in most states, called a portable order for life-sustaining treatment, or POLST. Other documents, like letters or videos about preferred medical treatments may be helpful in guiding care, though they may lack specific legal or medical authority.
In the absence of any applicable documents or previously stated wishes, the following approaches may help. Think back and revisit any conversations you had with your loved one and what they may have said about life and death. Maybe after a movie or reading a book, or an opinion they shared about the death of a public figure or neighbor or someone else in the family. These conversations can help you better understand what medical choices your loved one would have likely made.
Think as well about what your loved one enjoyed doing. End of life care is as much about how a person wants to live as it is about how they want to die. If there are medical options that will allow them to continue doing some of the things they loved in any capacity, that might be an option. Consider what they enjoy day to day, and center them in any decisions you make.
And don’t forget to include cultural considerations as well. Different religions, cultures, and ethnic groups all have different beliefs and needs at the end of life. Take your loved one’s culture into account when considering any limitations, requirements, or expectations.