Dr. Talia Lewis
At this time of year, many of us travel long distances to reunite with parents, siblings and extended family. In addition to the meals and celebrations, the annual holiday visit can be a good opportunity to open up conversations about changes we may notice in our loved ones’ health status, and overall, how their days are going.
One place to start is with your loved one’s mobility. Are they able walk or move around as well or as confidently as when you last saw them? Are they becoming increasingly short of breath, fatigued with their activities? Are they noticeably more anxious or stressed? Also, ask about how frequently your loved one leaves their home to run errands or to meet friends. If there are obvious changes since your last visit, you may be uniquely positioned to notice them and bring them up with your loved one.
The family visit also presents an opportunity to have conversations that are best done in person. For example, ask about what a good day is like for them or, if they are struggling with health issues, what constitutes a bad day.
If your loved one has a chronic illness such as cardiac or respiratory disease, and they have yet to start talking about advanced care planning, this may be just the right time to do so.
It can be hard to know where to begin in these conversations, but starting with what your loved one is experiencing on a day-to-day basis and then asking about their values and wishes can be just the right spot. In my daily palliative care consultations, when we pose that values question, each patient has an individual response.
Families may opt to open the advance care planning conversation by asking about a loved one’s worries and hopes: I’m worried about you and worried about the future. I’m wondering if you’re worried, too?
By acknowledging your individual and shared worries, you express care and concern while keeping the conversation open.
The truth is that your aging loved one may already be worrying about these issues and is relieved when you open the dialog. In one survey, 53% of respondents want their families to address advance care planning, but 63% of families report that they do not have that conversation.
Next, ask about their hopes for the future. Rather than focusing on the time left, focus on their preferences for how they want to spend that time and what, for them, constitutes a good quality of life.
For many of us, the holidays are often busy and stressful, and these conversations may sound like a family downer or an added burden. However, the bigger burden or risk is when we don’t know our family members’ preferences, and, as their health deteriorates or changes, we are having these conversations during a medical crisis when we are guessing how to honor our loved one’s wishes.
Advance care planning is something that we should talk about at any age—while we are healthy and before a health crisis or emergency. Everyone over age 18 should have a designated heath care proxy and share their wishes for medical treatment at end of life. In many families, advance care planning is not a one-time conversation, but one that you may need to re-visit again and again.
For families who feel uncomfortable initiating these dialogues about wishes and preferences for health care, I often recommend resources such as The Conversation Project (TheConversationProject.org), a public-engagement campaign that advocates “kitchen table” conversations with family and friends. The Project offers a Conversation Starter Kit in multiple languages. You may also visit our Care Dimensions website and The Learning Institute to access our educational resources, including instructional booklets, videos, community presentations, a webinar and podcast.
In my daily work as a hospice and palliative care doctor, I witness how the end of life holds much potential to be a love-filled and sacred time. I believe the best way to actualize that potential is to open this conversation and ask the big questions. Then, we will have the best chance of honoring what matters most to our loved ones while they are living.
We provide many educational opportunities for organizations and communities across greater Boston. Want to learn more about advance care planning or advance directives? Check the educational resources at our website.
Dr. Talia Lewis is a full-time hospice and palliative care physician who provides palliative care consultations at hospitals in the Cambridge Health Alliance network. She also works with an interdisciplinary team and manages the care of hospice patients who live at home in the Greater Boston area.