Not many people are comfortable talking about death. But sometimes, the only way to get more comfortable with something is to face it. On a quarterly basis, people across all walks of Memorial Sloan Kettering — doctors, nurses, patients, caregivers, and more — do just that when they gather for Death over Dinner, a group conversation centered on end-of-life issues. Sponsored by MSK’s Patient and Family Advisory Council for Quality (PFACQ), the discussion is quite spirited. People bond over their shared humanity and make space for a topic that some may consider taboo. But “taboo” takes on a new definition in the realm of this conversation, says Frank Licciardi, Co-Chair of the PFACQ.
“It does not mean something is forbidden, but rather sacred,” he says. “And when something is sacred, it should not be avoided — one simply has to be prepared to enter.”
Experts at MSK know how sacred conversations about dying can be. Having such difficult conversations early — perhaps at the point of diagnosis, and even when the outlook is good — can empower people to make decisions that best suit their needs. That’s because death is a deeply individual experience. “We cannot assume that what is a good death for one patient is a good death for another,” says Wendy Lichtenthal, Director of MSK’s Bereavement Clinic.
Here, Dr. Lichtenthal and other MSK experts offer time-honored wisdom on broaching the subject with family members, loved ones, or your care team.
Communicate What a Good Death Looks Like for You
“The meaning of a ‘good death’ is very personal,” Dr. Lichtenthal says. “It can be about modeling a specific attitude toward dying — and toward living — for loved ones. It can involve addressing unfinished business, such as having important conversations or doing things one has always wanted to do. It can involve knowing you have made your wishes clear or have taken care of estate issues so others will not have to. It can involve having certain music playing.”
Some people want to die at home, with their family present. Some people prefer hospice care, which is a specific form of supportive care that aids people as they near the end of life. Others prefer medical intervention for as long as possible. It’s important to think about what feels right for you, and to make it known. “This can lead to one’s end-of-life wishes being fulfilled, and it also relieves those who may ultimately be in the position of making decisions on behalf of their loved one,” Dr. Lichtenthal says. Having to guess someone’s wishes can be difficult for relatives and loved ones to manage. “Leaving decisions to family puts them in a precarious position,” adds Mr. Licciardi. “They are asked to make vital decisions for those they care most about in a very stressful environment.”
Gather a Team
At MSK, it’s not just your doctor wants to know how you’re feeling and what’s on your mind. Nurses, social workers, chaplains, psychologists, and other professionals are dedicated to sharing in your experience and helping you navigate it. “Only good things can follow when people can connect with their care teams,” says Mr. Licciardi.
Choose a Point Person
In stressful circumstances, it’s helpful to designate one person in a family — usually a caregiver — as the lead communicator. This way, information remains consistent. There are ways to include other loved ones, especially children, in a conversation. “Child-life specialists, psychologists, and social workers are often instrumental in helping adults navigate decisions about if and how to discuss these matters with children,” says medical oncologist Andrew Epstein.
“When a family is already coping with the weight of grief, it can be extremely challenging to have to cope with disagreements or distress related to their loved one’s estate,” says Dr. Lichtenthal. “When possible, it can be helpful for people to discuss all the decisions they’ve made about their estate with those who might be involved or affected.” It may also be helpful to talk about tasks you manage around the house. For example, as trivial as it may sound, you could show loved ones how to work the DVR, the air-conditioning, or another tool they may not be too familiar with. Any time you can remove a frustration in the lives of your loved ones, no matter how small, you are empowering them to cope with the many changes they may face.
Have Conversations Early and Often
Ongoing discussions about your wishes can help you feel more comfortable talking about death. Your care team wants to know what you want to know about what lies ahead: a lot of details, some details, only necessary information. “We know just how hard these conversations can be, and we want to hear from people regularly,” says Dr. Epstein. “We’re here to validate concerns people have and provide ongoing, never-ending support.”