It is agonizing for families to be asked to decide about treatment for a loved one when they don’t understand what the impact of those treatments might be and how they may facilitate or impede their loved one’s desired outcomes. For example, a week of tube feeding may restore an individual’s life to ensure they don’t miss their daughter’s wedding. For another individual, the risk of complications associated with tube feeding may outweigh the benefits. “My work involves teaching clinicians to stop asking these binary decisions - to take action or to not take action,” Dr. Chen states, “and to instead, provide individuals and families with informed recommendations.”
The first step is for clinicians to ensure their patients and their families have a full understanding of the prognosis. If a patient has Alzheimer's disease, do they and their loved ones know that this is a terminal disease with no known cause or cure? Are they aware of the life expectancy?
Dr. Chen encourages clinicians to check with patients and their families to ensure that they are on the same page with what they are being told about their outcomes. “Sometimes, I find during a discussion that we’re not even in the same book, let alone page, when we’re talking about their illness, and that means I have to step back and fill in that understanding gap,” says Dr. Chen.
The second step is for clinicians to find out what is most important to their patients. advance care planning is more about a reflection on one’s values and goals, fears and concerns, then having conversations with loved ones and substitute decision makers about those reflections; sharing those reflections with their health care professionals; and then finally documenting those wishes by creating informal or formal and legal documents.
In describing his own advance care planning process, Dr. Chen shared that he and his partner started their conversation about end-of-life care 15 years ago, focusing on what they didn’t want to lose, what they would be willing and not willing to tolerate.
“This is an ongoing conversation for us, as our lives evolve,” says Dr. Chen. “I don’t know now what kind of specific medical interventions I will need until I am faced with a serious medical condition, but I do know what I want to be able to do for as long as I can, and if that involves a tolerable medical treatment to enable that, then I’m willing.“
The third step is for clinicians to provide informed recommendations to patients and their families. Informed recommendations help patients and their families understand the kinds of medical choices that might be effective within the context of their current prognostic landscape, informed by the patient’s expressed values, goals, priorities, while avoiding their fears as much as possible.
Dr. Chen advises that taking this three-step approach can help clinicians support their patients achieve the best quality of life they can, for as long as they can, which is paramount. After all, isn’t enjoying life what it’s all about?