My wife and I are rewriting our wills. The first one was done when our kids were young. Now they are young adults, so it was time for a re-do. As part of the process, we also had to review who would make end of life decisions for us. We are not expecting to die any time soon – it’s just part of planning.
One of my daughters was visiting and asked my wife and me what we were doing. My wife casually explained that we were trying to figure out who would decide when it was time to “pull the plug.”
It’s hard to imagine a pale person looking whiter, but that’s what happened! “I don’t want any part of deciding when to do that,” she replied, visibly shaken.
Her comment made me realize that making an end-of-life decision can be challenging for both the patient and the one making the decision.
Who do you trust to carry out your wishes? Will they do what you really want done? Does the person you choose share your views on what should be done? Will they do what you want even if they don’t agree? How will they feel after they make the decision?
A recent article in JAMA raised these points. Since it’s a question a lot people have to grapple with, and one most don’t want to think about, I wanted to share some key points from the article on a topic nobody really wants to discuss.
The authors reviewed 40 studies that included 2,854 decision surrogates – the people who will make mostly end-of-life decisions for them.
They found that about one third of the surrogates reported lasting psychological trauma associated with the experience. And the patient can also suffer harm if a decision is made that is not consistent with their own values and preferences. Here are some key points from that article.
Provide More Than Just Information
Many doctors believe the best way to handle this is to help the surrogate with the necessary medical information to make an informed choice. Basically, give them good information and they will make a good choice.
Turns out this isn’t what happens. Making these types of decisions carries the risk of an intense emotional and psychological burden. To minimize that risk…
- First, provide the surrogate information. Ask the healthcare provider to explain the patient’s medical condition, their prognosis, and treatment alternatives.
- Discuss with the surrogate which treatment option best pairs with the patients values and preferences.
- Be aware that even if the surrogate fulfills the patient’s request, they may still experience depression, anxiety, and posttraumatic stress disorder.
- Information alone does not seem to alter either treatment decisions or psychological distress. 43% chose a more aggressive treatment plan that what the patient wished for.
So, information is essential, but information alone is not enough to result in the surrogate doing what the patient really wanted to have done.
Factors that influence decisions
If information alone isn’t the answer, what is?
- Realize how overwhelming the fear and anxiety is for the surrogate. It’s hard to think straight when you are thinking, OMG, I’m pulling the plug on mom or dad or grandma or grandpa or my wife or husband, sister sue, etc. People don’t make their best decisions when they are stressed out of their minds.
- Being that stressed can bend the will of the surrogate to make decisions they can live with rather than what the patient really wanted. A very stressed surrogate can inject their own beliefs. So, it’s important to have a talk ahead of time and be sure you and your surrogate decision maker are on the same page so they don’t have to decide in the middle of a crisis.
- That leads the surrogate to be in a bind and not want to feel responsible for the death of a loved one. It’s a real internal conflict. No one wants to feel like they aren’t a “good wife,” or a “loving daughter.” So, the surrogate may be much more aggressive than the patient ever wanted to be.
Tips to provide individualized support to the surrogate
There are ways you can work with your healthcare provider to help ensure your wishes are fulfilled and that your surrogate decision maker is spared emotional harm. According to the JAMA authors, these are things you should be doing in addition to frequent family meetings, ongoing communication with your healthcare provider, and understanding how to keep the patient comfortable and keep in mind their values and preferences.
- Make sure your doctor knows your surrogate need both support and information
- Make sure you and your surrogate share the same preferences or at least understand what yours are and what theirs are if preferences differ
- Have the surrogate and the doctor establish a relationship and that the doctor appreciates when the surrogate is too overwhelmed to make a decision
- Make sure your doctor can identify when the surrogate is making a decision that the patient would not want. A suggested question to ask the surrogate is, “What would the patient say if they were able to see themselves in this current situation.”
End of life decisions are difficult. All too often, someone we designate will be making decisions for us. This study helps to identify the issues that need to be considered. Information alone isn’t enough. The more you plan, the more likely your wishes will be carried out and the person who you designate as a surrogate will not feel emotional trauma for carrying out your wishes. Turns out, it’s just as important to plan for death as it is to plan for life.