Communication & Shared Decisions
Being heard is part of good care. This page draws on evidence-based communication frameworks to help you understand shared decision-making, know your rights, and prepare for conversations with your team.
What is shared decision-making?
Shared decision-making is a process where clinicians and patients (and often families) make care decisions together. It combines the team's clinical knowledge with what matters most to you: your values, goals, and concerns. The strongest evidence here is for specific supports, not for a vague instruction to “listen better.” Decision aids improve knowledge and reduce decisional conflict, while results for downstream health outcomes and satisfaction are not uniformly positive.
What listening can change
Listening is the mechanism that lets a care team discover how a person wants information shared, who should participate, how they understand illness, and which tradeoffs matter. Research supports structured decision aids, eliciting the patient's own explanatory model, asking rather than inferring disclosure preferences, and using professional interpreters when language access is needed.
Same decision, different worlds
One clinical moment is not one conversation
These are documented patterns, not prescriptions. Begin with the person. Tradition, region, and family are prompts to ask about — never a substitute for the answer in this room.
| Decision | Common U.S. default | Documented other patterns | Ask the person | Unknown / varies |
|---|---|---|---|---|
| Who hears the diagnosis first | Many U.S. teams default to telling the adult patient directly. | In documented family-centered patterns, relatives may expect to hear first and to decide how much the patient is told. Blackhall found Korean-American and Mexican-American elders less likely than European-American and African-American elders to say a patient should be told a metastatic diagnosis. | Ask the person: do you want information yourself, with family, or through someone you name? | Do not infer from ethnicity or language. Preferences vary inside every group. |
| Pain medicine that may cloud consciousness | U.S. hospice and palliative teams often treat comfort as the lead goal when death is near. | Published tradition guides record a real tension: comfort is valued, and so is a clear mind at the threshold of death. Hindu and Buddhist sources here note that sedation which clouds awareness may be resisted even when pain relief is accepted. | Ask: is a clear mind at the end as important as ease from pain — and who should help decide the dose? | There is no single Hindu, Buddhist, Muslim, or Christian dose. Ask the person and their scholar or chaplain. |
| Which language the truth is spoken in | English-language visits are still common even when that is not the family's language of meaning. | Professional interpreters improve communication and reduce errors versus ad-hoc family translation. Family members who interpret may also be the people being asked to carry news they have not consented to carry. | Ask which language this conversation should happen in, and whether a professional interpreter is wanted. | Bilingual does not mean willing to interpret bad news. |
Tradition-level rows for sedation and hospice live on the faith & medical decisions matrix. Cultural disclosure evidence lives in care frameworks.
Notes here are not saved
Listen first: a two-minute turn
One person speaks without interruption. The listener captures only key words, then reflects back and asks what they missed. Switch roles if helpful.
Current turn
The person speaks
Paused, 2:00 remaining.
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Your right to it
- You have the right to ask questions until you understand your options.
- You can ask your team to slow down, repeat themselves, or explain in plain language.
- You can request more time: a second appointment specifically to discuss decisions.
- You can involve a trusted person (family member, advocate, chaplain) in conversations.
- You can say "I need to think about this" before agreeing to any treatment or plan.
Preparing for a goals-of-care conversation
A goals-of-care conversation is where you and your team decide what care should accomplish. It goes better if you prepare. CAPC-trained clinicians use structured frameworks. You can use the same structure for your side.
What worries me most
Write down your biggest fear or concern about your illness or treatment.
What matters most to me
Name one to three things (an activity, a person, a state of being) that define quality of life for you.
What I want my care to do
Think about whether you want the focus on extending life, on comfort, or on a balance of both.
Questions I want answered
List the one or two questions you most need answered before you can feel settled.
Asking for more time
Visits are short. It is always appropriate to say:
"I'd like to schedule a separate conversation just to talk through my goals, not to make a decision today, just to think out loud together."
Most palliative and serious-illness care teams welcome this request. If yours seems rushed, a social worker or chaplain on the team can often help facilitate a longer conversation.
The evidence behind shared decision-making
In a survey of 800 elderly adults across four U.S. ethnic groups, Korean-American (47%) and Mexican-American (65%) respondents were significantly less likely than European-American (87%) and African-American (88%) respondents to believe a patient should be told a metastatic-cancer diagnosis, tending instead toward family-centered models of decision-making. The study's own recommendation: ask each patient how they want information handled and who should be involved — never assume from group membership.
The 2024 Cochrane update included 209 randomized studies (107,698 participants) across 71 healthcare decisions. Compared with usual care, patient decision aids probably increased informed values-congruent choices (RR 1.75; 95% CI 1.44–2.13; moderate-certainty evidence), and improved knowledge and accurate risk perceptions while reducing decisional conflict and passive decision-making (high-certainty evidence). Decision regret did not differ clearly between groups.
Taken together, this evidence supports one operating rule at the bedside: elicit rather than infer. Documented group-level patterns (in disclosure preferences, decision-making style, or explanatory models) justify offering options and asking better questions — they never justify assuming an individual patient's preferences from their ethnicity, language, or faith tradition. This is the same rule ValuesInCare applies to its own tradition summaries.
These claims are part of the cross-cutting care-frameworks evidence layer: see the full framework evidence (cultural humility, language access, explanatory models, and more).
Related resources
Explore more in Resources under Communication & Shared Decisions.
Last updated: 2026-08-31