Conversations about serious illness, dying, and the choices we may face near the end of life are deeply personal. They can also be some of the most difficult conversations to begin.
On September 23, By the Bay Health and Dominican University of California brought together community members, healthcare professionals, educators, students, patients, and families for When My Time Comes: A Community Conversation on Choice, Care & Compassion.
The evening included a screening of the PBS documentary When My Time Comes, followed by a panel discussion about Medical Aid in Dying (MAID), hospice and palliative care, patient autonomy, advance care planning, and compassionate, person-centered care.
Moderated by By the Bay Health CEO Skelly Wingard, the panel featured Dr. Carolyn Rennels, Assistant Clinical Professor of Palliative Medicine and Physician Lead, Medical-Aid-In-Dying at UCSF Health; Deborah Meshel, RN, BSN, MSN, Assistant Professor of Nursing at Dominican University of California; Diane Button, MA, death doula and author of What Matters Most; and Victoria Wilkinson, BSN, RN, Director of Patient Care Services at By the Bay Health.
The goal wasn’t to persuade anyone toward a particular point of view. It was to create space for learning, respectful dialogue, and greater understanding. Throughout the evening, one idea remained central: every person deserves compassion, dignity, excellent care, and the opportunity to have their wishes understood and respected.
Here are seven key takeaways from the conversation.
1. We need to talk about end of life before there is a crisis
One of the clearest messages of the evening was also one of the simplest, which is to start the conversation earlier.
As Deborah Meshel observed, we devote tremendous time and energy to preparing for the beginning of life, yet often spend very little time preparing for its end. Families may put off conversations about serious illness and death because they feel uncomfortable, frightening, or simply premature.
But talking about death does not mean giving up on life. Panelists described these conversations as opportunities for connection, clarity, and even peace. Talking about our wishes before a crisis can also be a gift to the people we love. It helps them understand what matters to us if they are ever called upon to speak on our behalf.
2. There is no single definition of a “good death”
Every person’s values, priorities, relationships, beliefs, and experiences are different. What feels like a peaceful or meaningful end-of-life experience will be different, too.
Victoria Wilkinson emphasized the importance of asking each individual what matters rather than assuming we already know. Those conversations allow healthcare teams to build a plan of care around the person, not just the medical condition.
That principle extends far beyond any individual decision about MAID. It is fundamental to person-centered care. Listen first, understand what matters, and help patients and families navigate the choices available to them.
3. Hospice does not mean “there is nothing more we can do”
The panel also addressed common misconceptions about hospice, palliative care, and MAID.
As Dr. Carolyn Rennels explained, palliative care focuses on relieving the physical and emotional suffering that can accompany serious illness. Hospice shifts the focus of care when a person is approaching the last months of life, emphasizing comfort, quality of life, and relief from suffering. Medical aid in dying is a separate legal medical process with specific eligibility requirements and safeguards.
One persistent misconception is that choosing hospice means there is nothing more to be done. Panelists challenged that assumption, asserting there is still much that can be done. Hospice can help manage symptoms and provide comfort while supporting caregivers and addressing emotional and spiritual needs. Most importantly, it can help people spend their time in ways that reflect what matters most to them.
4. Patient autonomy begins with listening
Decisions near the end of life can involve deeply held personal, cultural, spiritual, ethical, and medical beliefs. Throughout the evening, panelists returned to the importance of approaching these conversations with openness, curiosity, and humility.
Healthcare professionals and family members may not always share a patient’s beliefs or choices. But supporting someone does not necessarily mean agreeing with every decision they make.
Diane Button emphasized listening without judgment, recognizing that each person’s experience is unique, and examining our own assumptions as we enter these conversations.
Wilkinson offered another important distinction: autonomy should not mean abandonment. People can have choices while also receiving compassion, information, support, and human connection.
5. Advance care planning is about more than completing a form
Advance directives are important, but meaningful advance care planning begins with conversation.
Dr. Rennels encouraged individuals to identify a trusted surrogate decision-maker who understands not only their healthcare preferences, but also the values behind them.
What brings you joy? What makes life meaningful? What does quality of life mean to you? What would you want someone making healthcare decisions on your behalf to understand?
These conversations are best started while we can clearly communicate our wishes. Being specific about what matters can give the people we trust greater confidence if they ever need to make difficult decisions for us.
An advance directive can document your preferences. A conversation helps people understand the person behind those preferences.
6. At the end of life, relationships often come into sharper focus
Some of the evening’s most powerful reflections were not about medicine at all.
Button shared lessons from accompanying people near the end of life. Many of the things people spend their lives pursuing can become less important. What often comes into sharper focus are relationships, love, spirituality, connection, and the knowledge that a life was lived and a person was loved.
Her experience also reinforced something all of us can practice: listening.
Giving someone the space to talk openly about what they are experiencing, fearing, hoping for, or holding onto can help us better understand what they need and how we can support them.
7. Community conversation itself is an important form of care
Some topics are too important to discuss only after a diagnosis or during a healthcare crisis.
Bringing conversations about serious illness, hospice, palliative care, MAID, advance care planning, and end-of-life wishes into the community can make difficult subjects more approachable. It gives people more opportunities to learn, reflect, ask questions, and better understand their choices before they need to make them.
These conversations do not require everyone to reach the same conclusions. Respectful dialogue makes room for different beliefs, experiences, and perspectives.
What matters is creating communities where people feel informed, heard, supported, and able to communicate what matters most to them.
As the evening concluded, attendees were encouraged to continue these conversations with their loved ones, healthcare providers, and communities. The more willing we are to talk openly about serious illness and the end of life, the better prepared we can be to support one another through life’s most challenging moments.
How to Get Started
Start an advance care planning conversation
Talk with your loved ones and healthcare providers about your values, healthcare preferences, and what quality of life means to you. Consider identifying a trusted person who could serve as your surrogate decision-maker if you are ever unable to communicate your wishes.
Learn about advance directives
Your physician or healthcare provider can help connect you with advance directive resources and forms. The Coalition for Compassionate Care of California also provides resources to help individuals and families begin advance care planning conversations.
Learn about hospice and palliative care
By the Bay Health is the largest independent nonprofit provider of hospice, palliative care, home health, pediatric care, and bereavement support for patients and families throughout the Bay Area. Patients and families can talk with their healthcare provider about a referral or contact By the Bay Health directly to learn more about available care and support.
Continue the conversation
You don’t need to wait for serious illness to ask the people you love: What matters most to you? What would you want me to know if I ever had to make healthcare decisions on your behalf?
Sometimes the most important step in planning for the end of life is simply beginning the conversation.