If you’ve agreed to make serious treatment decisions for a loved one should he/she be unable to, you probably think you know what your loved one would want. So you might be surprised to learn that you very likely don’t know your loved one’s true wishes. Here’s what you need to do—now.
Researchers at Yale University Medical School and VA Connecticut Healthcare System wanted to better understand this gap—and how to close it—so they conducted phone interviews with 349 primary care patients and their surrogates.
Most of the patients in the study were male (68%) and had an average age of about 66. Most of the surrogates were women (78%) and were usually the patient’s spouse or partner.
The patients were asked to look at three hypothetical health-care situations that could result from treatment of serious illness…
- Severe physical disability: Being confined to bed without the ability to care for themselves.
- Severe cognitive disability: Being unable to recognize family members.
- Severe pain: Being in severe pain every day.
The surrogates were asked how confident they were that they knew what their loved one’s wishes would be for the three situations…and then to rate the situations as “acceptable” or “unacceptable” to their loved one.
Results: While 75% of surrogates rated themselves as extremely confident, when patient ratings were matched with surrogate ratings, only 21% of the surrogates correctly matched their loved one’s ratings for all three situations.
Overconfidence may be a barrier to having the type of discussion needed to understand a loved one’s wishes…and the researchers advise primary-care providers to encourage patients and surrogates to have such discussions. If help is needed initiating such a discussion, they recommend the online Conversation Starter Kit from the Institute for Healthcare Improvement.
This conversation is vital. The researchers also commented that surrogates tend to underestimate the stress, guilt and doubt that they may experience during and after making these decisions. Surrogates frequently experience depression, anxiety and even post-traumatic stress as a result of their decisions.
So if you’re a surrogate, it’s important to discuss specific wishes with your loved one in detail—and to repeat the conversation from time to time, because wishes may change. Remember, your responsibility is to choose what your loved one wants…not what you want for them.