How to Have a Goals of Care Conversation: A Guide for Patients and Families

What Is a Goals of Care Conversation?

A goals of care conversation is a discussion between a patient, their family, and their medical team to identify what matters most to the patient — and then make sure every medical decision supports those priorities. Unlike a typical doctor's visit, which focuses on test results and treatment options, this conversation centers on you: how you want to live, what you're willing to go through, and what kind of quality of life matters most.

These conversations typically cover three ground: medical facts (what's happening with your health), priorities (what's most important to you), and care preferences (what treatments you do or don't want). The goal isn't to make decisions immediately — it's to build a shared understanding that will guide decisions down the road.

Organizations like VitalTalk (a communication skills training nonprofit) and the Center to Advance Palliative Care (CAPC) have developed evidence-based frameworks to help clinicians lead these conversations. While their resources are primarily aimed at clinicians, the underlying principle is the same for families: clear communication leads to better care.

Why Families Need to Talk About This Before a Crisis

The worst time to make a difficult medical decision is in the middle of an emergency. Yet that's exactly what happens to thousands of families every day — a parent has a stroke, a loved one's cancer stops responding to treatment, an elderly relative falls and can't recover. In that moment, the family is asked: "What would they want?"

If no one has ever talked about this, families are left to guess. And guessing under stress is how rifts form, how guilt builds, and how patients end up receiving care that doesn't match what they would have wanted.

A 2021 study in JAMA Internal Medicine found that nearly 70% of seriously ill patients had not discussed their care preferences with their families. When those patients lost decision-making capacity, clinicians spent significantly more time mediating family disagreements — time that could have been spent providing comfort.

The goal of care conversation isn't just about advance directives or legal documents. It's about giving your family something more valuable than information — it's giving them clarity. When the moment comes, they'll know what you want because you told them.

Who Should Be in the Room?

You don't need a full family reunion for a goals of care conversation. The core participants are:

• The patient — ideally, the person whose health is at the center of the conversation.
• Your healthcare proxy — the person you've designated to make decisions on your behalf if you can't.
• Any family members who will be involved in caregiving or major medical decisions.
• Your primary care physician or specialist — someone who can explain the medical situation clearly.
• A palliative care specialist — if your condition is serious, a palliative care team can help facilitate the conversation and ensure all questions are answered.

Talking to Your Doctor

If your doctor hasn't brought up goals of care, you can start the conversation yourself. Try saying: "I'd like to set aside some time to talk about my overall health goals. Can we schedule a longer appointment?" Many clinics now have social workers or palliative care nurses who can help facilitate these discussions — you don't have to navigate them alone.

How to Prepare for Your Conversation

You don't need to come with answers. But a little reflection ahead of time makes the conversation much more productive.

Before your appointment, take some time to think through a few questions: What does a good day look like for me right now? What activities or experiences make life feel meaningful? If my health got significantly worse, what would I most want to avoid? Are there treatments I'm willing to endure for the chance of more time, or are there treatments I would refuse even for more time?

If you find this kind of reflection difficult — that's completely normal. Many people do. Our Values Clarification Worksheet walks you through 15 prompts designed to help you identify what's truly most important to you, in a way that feels reflective rather than clinical.

What to Discuss: The Key Topics

A good goals of care conversation touches on several areas. You don't need to cover everything in one sitting — these discussions often unfold over multiple conversations — but here's a roadmap of what to include:

• Your understanding of your health situation. What has the doctor told you about what's happening? Do you feel clear about your prognosis, or are there questions still unanswered? Asking your doctor to be direct — "What is my expected trajectory?" — is one of the most important things you can do.
• What matters most to you. Is your priority living as long as possible, maintaining independence, minimizing pain, being able to recognize family members, staying at home? These priorities aren't right or wrong — they're yours.
• Your treatment preferences. Are there treatments you're willing to undergo (chemotherapy, surgery, intubation) for the chance of more time? Are there treatments you'd refuse, even if they might extend your life? This is also where you discuss resuscitation preferences — whether you would want CPR if your heart stopped.
• Your tolerance for trade-offs. Most treatments involve some trade-off: more time might mean more pain; comfort might mean less aggressive intervention. Discuss with your family where your lines are.
• Who will speak for you. If you lose the ability to communicate, who will make decisions? Have you formally designated a healthcare proxy? Have they agreed to this role and do they understand your wishes?

How to Share Your Wishes with Your Care Team

Having the conversation with your family is only half the work. You also need to make sure your medical team knows what you've decided. Here's how to do that effectively:

1. Ask for a family meeting. Most hospitals and clinics will arrange a family meeting with your care team if you request one. You can say: "We'd like to schedule a goals of care conversation with Dr. [Name] and any other members of the team who are involved in [patient]'s care."
2. Bring a written summary. After your conversation with your family, write down the key points. This doesn't need to be a legal document — a one-page summary of your priorities and preferences is often enough to guide a clinician in a crisis.
3. Share it widely. Give copies to your primary care physician, your specialist, your healthcare proxy, and any other clinician involved in your care. Put a copy in your medical record if the hospital allows.
4. Use your AI-guided tool. Our AI-guided Goals of Care Conversation tool helps you prepare for this discussion by walking you through a series of reflective questions and generating a shareable summary you can bring to your next appointment.

What If My Family Disagrees?

Family disagreements are more common than people expect — and they rarely have a clean resolution. One sibling may want aggressive treatment; another may feel strongly about comfort care. This is one of the most painful parts of serious illness, and it's why documentation matters so much.

If your family is struggling to agree, consider asking your care team to arrange a facilitated family meeting with a social worker or palliative care specialist. These professionals are trained to help families work through conflict and find common ground. The goal isn't to win an argument — it's to honor the wishes of the person whose life is at stake.

How to Document Your Goals of Care

A goals of care conversation is a starting point — not an endpoint. The preferences you discuss need to be captured in a form that can guide care when your voice can't.

Using a Living Will vs. a Goals of Care Document

A living will (advance directive) is a legal document that spells out which medical treatments you want or don't want in specific scenarios — such as whether you want artificial feeding tubes or ventilators if you can't breathe on your own. It becomes active when you can't speak for yourself.

A goals of care document is a broader statement of your priorities and values — how you define quality of life, what trade-offs you're willing to accept, what kind of care environment you prefer. Some states have specific goals of care planning forms; others don't. Either way, the conversation is what matters most.

Our Care Plan Builder allows you to document your care preferences in plain language and share them with your family and care team. It's not a substitute for a legally executed advance directive, but it adds the depth and nuance that legal forms often lack.

When to Revisit and Update Your Plan

Your goals of care conversation isn't a one-time event. Your health will change. Your priorities may shift. What you wanted at age 60 may not be what you want at age 75. Revisiting your care plan regularly is one of the most important things you can do.

Signs It's Time to Have the Conversation Again

• You've been diagnosed with a new serious condition.
• Your current treatment isn't working as well as expected.
• You've been hospitalized or had a significant health event.
• Your functional abilities have noticeably declined.
• A family member — your healthcare proxy — is no longer available or suitable.
• You simply feel ready to revisit the conversation. There's no wrong time to do this.

The Family Conversation Starter Guide offers a gentle, structured approach to opening this dialogue with loved ones. It includes reflection prompts, conversation scripts, and a shared document your family can use to capture everyone's input. Starting the conversation early means you're never starting from scratch.

For additional resources, GetPalliativeCare.org provides clear, family-facing information about palliative care and goals of care planning, including questions to ask your medical team at every stage of illness.