Communication & Shared Decisions
Being heard is part of good care. This page draws on communication evidence to help you understand shared decision-making, know your rights, and prepare to talk 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 settings
One clinical moment is not one conversation
Each row names one source, where and when it studied, and what it cannot show. A group pattern is a prompt to ask, never a prediction about the person in front of you.
| Decision | What the source found (setting, year) | What it does not show | Ask the person | Unknown / varies |
|---|---|---|---|---|
| Who hears the diagnosis, and who decides | Blackhall et al., JAMA 1995: a survey of 800 adults aged 65 and over at 31 senior centers in Los Angeles County, 200 in each of four self-identified groups. 47% of Korean American and 65% of Mexican American respondents said a patient should be told a metastatic cancer diagnosis, compared with 87% of European American and 88% of African American respondents. Searight and Gafford, American Family Physician 2005 (a review), describe disclosure, who decides, and advance directives as dimensions that vary culturally. | One U.S. county, in the 1990s, among older adults who attended senior centers. These are group percentages. They do not predict what any person wants, and they say nothing about people outside these four groups. | 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. |
| Sedation for refractory symptoms near death | De Weyer et al., Annals of Palliative Medicine 2026: a scoping study of written religious normative sources. Christian denominations generally accept palliative sedation as a means to relieve suffering when intent is relief and not hastening death, with concern about lowered consciousness for spiritual preparation, especially in Eastern Orthodox sources. For Hinduism, Buddhism and Sikhism the authors found few explicit authoritative statements and a common value on consciousness at the moment of death, with sedation still described as possible. | Written normative sources, not what patients or families choose. Evidence on Sikh sources is especially limited. It does not give a dose or a rule for any person. | Ask: is a clear mind at the end important to you, and who should help decide? | No tradition has one position on dose or timing. Ask the person and the adviser they choose, such as their own faith leader or a chaplain. |
| Which language the news is spoken in | Karliner et al., Health Services Research 2007: a systematic review of 28 studies published 1966 to September 2005, in English, from PubMed and PsycINFO. Use of professional interpreters was associated with better communication, use of services, clinical outcomes and satisfaction than ad hoc interpreters among patients with limited English proficiency. | Mostly older studies. It compares kinds of interpreter, not whether a given family member wants to carry difficult news. It does not cover every language or setting. | Ask which language this conversation should happen in, and whether a qualified medical interpreter is wanted. | Confirm both language ability and willingness before asking anyone to interpret bad news. This tool does not replace a qualified medical interpreter. |
Learning runs both ways
Two cases from the Palliative Care Register, each with its scope. They describe law and policy in particular places. They are not rankings, and they do not say how any country performs overall.
Law alone did not open access
India's 2014 amendment eased morphine rules, yet a decade later most surveyed government providers in Kerala still could not prescribe it, and several states confined dispensing to hospital pharmacies. What U.S. services may take from this: a permitted option is not an available one; ask who can actually prescribe and stock it.
Does not transfer without trained prescribers, registered institutions and supply.
Who may prescribe is a policy choice
Uganda lets clinical officers and nurses with a specialist palliative care certificate prescribe and supply oral morphine under 2004 regulations, with government-supplied medicine. What U.S. services may take from this: scope of practice shapes who a patient can reach.
Does not transfer without changes to scope-of-practice law, training capacity and public supply or financing.
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.
Nothing entered here is transmitted or saved by Values in Care. Clearing or leaving the page erases these notes.
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, and 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: 2026-10-13