Once our patients have discussed their end of life care wishes with their loved ones, it is important for them to decide how and when to have the conversation with their healthcare team. Physicians are powerful advocates during the end-of-life process, so it is important they know a patient’s priorities and values.
“Everyone should be thinking about what they want towards the end-of-life at any age in their adulthood,” says Dr. Mary Fox, Medical Director for Advanced Illness Management Services. “Because what they want is likely to change over time, addressing this topic every couple of years is always a good idea.”
Talking to doctors about end-of-life care wishes can be intimidating. “The biggest barrier to this conversation is when the patient feels uncomfortable or assumes the doctor is not willing to talk,” says Fox. However, there are many ways to help prepare for these conversations, while feeling comfortable and supported.
Ask specifically, ahead of time.
When first starting the conversation, we encourage patients to call beforehand and let their doctor know they would like to schedule time to specifically have this conversation. Doctors can be actually reimbursed for this appointment through medicare, so it is encouraged for them to have these conversations.
If it is easiest to have this conversation during another appointment, we always tell patients to start the conversation with a specific and direct opening line. “I want to have a conversation about end-of-life care” can help set the tone and prepare doctors for the conversation.
Before the conversation, it is important to take time to research and learn about what is discussed during these times. Patients should research what important questions and common medical terms. A little research can go a long way in bridging understanding and promoting self-advocacy during the conversation.
Specifically, we tell patients to take time and think through what is important to them and what they value. We encourage them to share any reflections they have had about death, especially if they’ve experienced a death of a loved one already. We also remind patients that it is good to communicate any life events important to them such as birthdays, anniversaries, or weddings.
“In this day and age,” says Fox, “there are many resources online that can be very helpful before and during these conversations.”
She recommends looking through the resources produced by the Conversation Project. Their pamphlet specific to talking with physicians is a wonderful place to start. “It’s a great idea to work through the Starter Kit and bring that to the meeting,” says Fox.
Be specific but flexible.
“As a doctor, the more specific a patient is, the better,” says Fox. However, it is important to keep in mind that an end-of-life care plan written now may not be accurate later, especially if the conversation has been had early.
“In your 40s,” says Fox, “What you might want to do in the face of something very catastrophic would be different than what you would be doing when you were 60. Or different than when you were 80.”
We encourage patients to avoid extreme words and take time to think through how their wishes might change over time.
VNA believes in the importance of these conversations and are committed to helping patients think through and communicate their end-of-life wishes.
“We have this conversation with every patient in our Advance Illness Management program,” says Fox. “Every visit that we make with those patients involves talking about advance care planning.”
VNA schedules specific appointments for these conversations. Patients are provided with their own Starter Kits and other resources. Our team of both doctors and social workers then help guide our patients and their families in order to decide what is best for them.
If you or your loved one are beginning to explore what end-of-life care might look like, VNA is here to help. Reach out at (314)918-7171 to learn more about how we can support you in these conversations and decisions.