Open Conversation Keeps End-of-Life Care in Line with Personal Values
Patients and their families struggle with myriad choices concerning medical treatments that frequently precede death. While advance directives can be useful tools in some circumstances, experts say that open communication among families and clinicians is most important for avoiding unnecessary conflict and ensuring that treatment decisions reflect the individual.
James Tulsky, M.D., is director of the Center for Palliative Care at Duke University Medical Center. He said people should consider and openly discuss how their values in life translate into a philosophy of care.
"There are two settings in which you may want to consider end-of-life decisions: in the context of serious illness and as a healthy person looking ahead," Tulsky said. "In either case, one needs to consider what he or she personally values in life and communicate that to people you love through conversation and perhaps also in writing."
In the case of serious illness, patients and family members should be willing to ask questions of clinicians and other healthcare providers to ensure that they have the information mandatory to make the best decisions regardless of treatment outcomes, Tulsky said.
"It's important to ask your doctor 'what if' questions. For example, 'What if the surgery is unsuccessful? What is my option then?' People sometimes have difficulty discussing such issues because it is hard for them to consider that the treatment might not work. They may worry that a failure to remain positive could actually have an adverse effect on their outcome."
Tulsky recommends that people approach such decisions by "hoping for the best while planning for the worst.
"Patients should think through with their healthcare provider what to do if a treatment doesn't go well and be willing to engage that," he said. "It doesn't mean that you are giving up, it just means you are considering all of your options so that you can make the best decision regardless of what you find.
"Families should also ask clinicians what they recommend. This is not, 'what would you do for your mother, but rather what should we do given what you understand about our mother.' Clinicians should provide recommendations that reflect the patient's core values."
It is also important to realize that end-of-life care decisions may not be black and white, he said.
"In some cases, you may have a diagnosis that is uncertain at some level," he said. "There may be questions about the level of seriousness. Patients in those situations may want to proceed with surgery or other treatment, while at the same time wanting to remain pain-free. Patients and their families may get stuck when a surgery is unsuccessful if they have not discussed clearly in advance what might happen in such a case."
Tulsky reminds people that advance directives can be useful as a means of laying out a general philosophy of care, but will not translate into a course of treatment until orders are written by a clinician.
"Directives in and of themselves in a number of cases aren't useful for decision-making," Tulsky said. "Rather, the primary value in completing one often lies in beginning the conversation with yourself, your family and your healthcare provider. I also suspect that advance directives can ease decision-making for family members. But again, this is not because of the piece of paper, but because you have already begun the conversation."
Naming a healthcare proxy - someone that you wish to make decisions for you should you become unable - is another useful thing people can do, Tulsky said.
"A proxy can be particularly important when there may be conflict among decision makers or when you wish to select a non-traditional decision maker, such as an unmarried partner," he said.