The frameworks behind values-driven care

Skip anything

Every question is optional. No one has to retell painful events, name a diagnosis, or choose a religion or identity to begin.

Pause or stop

Stop at any point. Nothing is sent anywhere, and nothing is shared unless the person chooses it in the sharing review.

Whose words

Record who said each thing: the person, a caregiver or surrogate, or a professional. A caregiver's needs get their own field.

Support to take part

Extra time, a quieter place, pictures, an interpreter or a trusted person can help someone say what matters. Ask what helps.

Barriers are not preferences

Cost, travel, work, housing, caring for others and digital access are written down as barriers, not as what the person wants.

Meaning, religious or not

Hope, purpose, faith, relationships and identity can be part of the conversation if the person wants. None is assumed.

• Physician or nurse: Results, options and what to expect.
• Palliative care team: Serious-illness conversations and symptom care, where available.
• Social worker: Family meetings and practical support.
• Chaplain or spiritual-care provider: Meaning, distress, hope and relationships, for people of any faith or none.
• Interpreter or communication specialist: Language and communication support so the person's own words come through.
• People the person chooses: Family, friends, or a community or faith contact, only if the person wants them. Never assumed safe, available or wanted.

Roles, titles and training differ by country and service. Not every role exists everywhere.

A small set of places chosen for contrast, not a ranking or a representative survey: Global, Japan, Taiwan, Saudi Arabia, Bangladesh, Spain, Nigeria, Argentina, Australia and New Zealand, Iran, Germany, United States. Each example states what its source establishes and what it does not. Policy on paper is not proof that a service is available.

Guidance, not outcomes:

Shows what is written or recommended. It does not show that it is followed or what results.

Abstract only:

Read from the abstract. The full paper may add or qualify this.

Place from authors:

The place is taken from the authors' affiliations, not from where data were collected.

Source discrepancy:

Parts of the source disagree with each other, for example an abstract and a table. The Limits note says which part is used.

Policy, not outcomes:

Shows what is written or recommended. It does not show that it is followed or what results.

Our translation:

The source is not in English. The quote is our own translation, not an official one.

• Global · Guidance · 2024

  WHO's 2024 Patient Safety Rights Charter states that every patient has the right to information about their health condition, treatment options, risks, benefits and prognosis in an accessible and understandable format.

  Limits: Guidance, not outcomes

  What others could learn: The charter gives a shared starting point: patients have a right to information about condition, options and prognosis, and family are involved as the patient designates. A care team can ask early what the person wants to know and who to include, then record both answers.

  Conditions, limits and source

  Conditions that matter:

  National law and professional codes decide how far the charter binds anyone. Services need interpretation, accessible formats and time for the conversation. Whether a person may decline information, and how that is documented, is left to national law and practice.

  Cannot be inferred:

  Does not show any country has adopted the charter, that services meet it, or how it applies to a person who asks not to be told. Says nothing about how disclosure should be paced or how disagreement with relatives should be settled.

  Limits:

  Non-binding charter framed around patient safety, not a legal text or an evaluation. The sentence quoted names prognosis but does not address a person who prefers not to receive information; no waiver wording was found anywhere in the charter text. Right 10 says family members 'as designated by the patient' may be involved in discussions and decisions, so the patient names who takes part.

  Source: World Health Organization, Patient safety rights charter (Section linking patient safety and human rights, 'Right to information', printed p. 5 (PDF p. 5); see also right 7 (PDF pp. 7-8) and right 10 on family involvement (PDF p. 8)). Where: Global. Population: Patients in any health care setting. Published 2024-04-16; retrieved 2026-10-11.

• Japan · Measured outcome · 2014

  In a randomized trial of 30 oncologists run by Japanese institutions, patients of oncologists given 2-day communication skills training based on patient preferences reported significantly lower depression ratings than control patients; satisfaction with communication style did not change.

  Limits: Abstract only · Place from authors

  What others could learn: Training that starts from what patients say they want when hearing bad news can improve clinicians' communication performance and confidence, and may lower patients' depression ratings, even when patients' satisfaction does not move. A service could ask patients what they want from a bad-news conversation and build training from the answers.

  Conditions, limits and source

  Conditions that matter:

  Facilitators and simulated patients; a 2-day workshop; clinicians willing to be assessed. How the patient preferences behind the program were gathered is not described in the abstract.

  Cannot be inferred:

  Does not show what Japanese patients in general want to know, or that family-requested non-disclosure changed. Not a test of asking each patient their own information preference. Effects beyond the follow-up survey are unknown, and one trial with 30 oncologists is small.

  Limits:

  Abstract only; full text not read. The abstract does not name the hospitals; Japan is inferred from author affiliations. Oncologist performance was rated in simulated consultations. The abstract reports no effect on satisfaction and does not report whether the depression difference lasted.

  Source: Journal of Clinical Oncology (American Society of Clinical Oncology), Effect of communication skills training program for oncologists based on patient preferences for communication when receiving bad news: a randomized controlled trial (PubMed abstract, Results). Where: Japan. Population: 30 oncologists and 1,192 of their patients with cancer. Published 2014-06-09; retrieved 2026-10-11.

• Taiwan · Measured outcome · 2021

  In a randomized pilot of 61 Taiwanese advanced practice nurses, 6 hours of SHARE training raised nurses' self-rated confidence and perceptions of cancer truth-telling; recipients' satisfaction did not differ, and patients of trained nurses had higher depression ratings.

  Limits: Abstract only

  What others could learn: In this pilot, a 6-hour course raised nurses' self-rated confidence but showed no benefit for patients or caregivers and higher depression among patients. Recipient outcomes need testing before adoption.

  Conditions, limits and source

  Conditions that matter:

  Six hours of training with facilitators and simulated patients; nurse roles that include disclosure conversations. The abstract describes SHARE as a Japanese model adapted here for advanced practice nurses.

  Cannot be inferred:

  Does not show Taiwanese patients or families prefer any disclosure approach, nor that SHARE helps recipients. The small pilot, short follow-up and mixed patient results limit any claim of benefit. Not evidence about Taiwan's legal framework.

  Limits:

  Abstract only; full text not read. Pilot with follow-up 2 weeks after training. The abstract also reports higher depression in patients of the experimental group (beta = 1.65, p = 0.01) and the authors call for more rigorous tests from recipients' viewpoint.

  Source: Psycho-Oncology (John Wiley & Sons), Effectiveness of communication skill training on cancer truth-telling for advanced practice nurses in Taiwan: A pilot study (PubMed abstract, Results). Where: Taiwan. Population: 61 advanced practice nurses; 480 cancer patients and caregivers who rated truth-telling. Published 2021-01-25; retrieved 2026-10-11.

• Saudi Arabia · Measured outcome · 2026

  In a mixed-methods study in Jeddah, Saudi Arabia (data 2019 to 2021), 51.5% of the group labeled cancer patients, 46.8% of the public and 73.1% of healthcare providers disagreed with concealing gynecological cancer information at relatives' request.

  What others could learn: Clinicians and relatives may disagree with each other and with patients about prognosis even when most support telling the patient the diagnosis. A team can ask the person who should hear the news first, who should be present, and how much prognosis they want, instead of assuming relatives' requests speak for the patient.

  Conditions, limits and source

  Conditions that matter:

  Arabic-language materials; a senior clinician leading disclosure was the most common preference in this sample; family presence in the room. The authors recommend training in culturally sensitive, ethically based communication.

  Cannot be inferred:

  Not representative of Saudi Arabia or of any religious group; the paper itself says disclosure preferences should be interpreted within the broader sociocultural context rather than attributed solely to religion. Not evidence of what happens in clinics, and gynecological cancer only.

  Limits:

  Single city; one medical center plus shopping malls. The paper's 'cancer patient' category reflects self or family cancer exposure, and its Table 1 group counts (203, 405, 135) do not match the abstract's total of 737. Prognosis was a point of disagreement: the abstract reports 25-36% supported disclosing a bad prognosis, physicians least (6.7%). Across groups the patient was the preferred first recipient of bad news, then a spouse or close relative (same paper).

  Source: Journal of the Egyptian National Cancer Institute, Disclosure of gynecological cancer diagnosis: a mixed-methods study from an Islamic cultural context (Results, 'Participant's views and beliefs regarding breaking gynecological cancer-related news', Table 3; abstract Results). Where: Saudi Arabia. Population: 737 participants: members of the public, physicians, relatives and patients with gynecological cancer, recruited at one medical city and four shopping malls in Jeddah. Published 2026-07-21; retrieved 2026-10-11.

• Bangladesh · Measured outcome · 2025

  Among 71 Bangladeshi caregivers in screened collusion-prone situations with adults who had stage IV cancer, 54.9% thought the patient wanted to know the truth; 66.2% thought hiding it would give hope of a complete cure.

  Limits: Source discrepancy

  What others could learn: Caregivers who withhold the truth may still believe the patient wants to know, so the request to hold back can be explored rather than simply accepted or refused. Staff could ask the caregiver what they fear, offer to ask the patient what they want to know, and help families plan a gradual, indirect disclosure.

  Conditions, limits and source

  Conditions that matter:

  Palliative care staff with time to talk with caregivers separately and with the patient; Bengali-language, validated tools. The authors say the nature of these situations is shaped by culture and social values.

  Cannot be inferred:

  Not the proportion of Bangladeshi families who withhold information. Not what patients want. Does not show that disclosure, or continued withholding, leads to better outcomes.

  Limits:

  Caregivers only; patients were not asked. Only caregivers who answered no to both screening questions were included, yet 54.9% later said the patient wants to know, which the paper does not reconcile. The table labels the 66.2% as caregivers' perception that the patient will be cured. Small sample, consecutive sampling, two hospitals. Screening for actual collusion was not possible.

  Source: Palliative & Supportive Care (Cambridge University Press), Situations in which caregivers and patients are likely to collude: Perspectives from caregivers of advanced cancer patients in Bangladesh (Results, 'Survey result' section (PMC full text)). Where: Bangladesh. Population: 71 caregivers (spouses 31%, children 26.8%, parents 19.7%) of adults with stage IV cancer; caregivers only, not patients. Published 2025-02-21; retrieved 2026-10-11.

• Spain · Policy · 2002

  Spain's Law 41/2002 names the patient as the holder of the right to clinical information and provides that persons linked to the patient by family or fact are informed to the extent the patient permits, expressly or tacitly.

  Limits: Policy, not outcomes · Our translation

  What others could learn: A law can make the patient the first recipient, let the patient decide how much family hear, and require a recorded waiver for someone who does not want information. It also allows documented therapeutic-necessity exceptions.

  Conditions, limits and source

  Conditions that matter:

  Clinical records where waivers and therapeutic-necessity decisions are written down; clinicians who know the law; a capacity assessment practice for the exception where information goes to family.

  Cannot be inferred:

  Does not show how often clinicians follow the law, how courts treat family requests, or what patients and families experience. Describes the text of one national law, not practice or the autonomous communities' rules.

  Limits:

  Consolidated text on the BOE site states it has no legal value; the official gazette version governs. In the same text, Art. 4.1 respects a person's will not to be informed, and Art. 9.1 requires a documented waiver, limited by the patient's health, third parties and therapeutic needs. Art. 5.3 sends information to family when the doctor judges the patient lacks capacity. Art. 5.4 allows a physician to withhold information for documented 'therapeutic necessity' and then tell linked persons. No article read (Arts. 4, 5, 9) names a family request as a ground for withholding; regional rules were not reviewed.

  Source: Jefatura del Estado, Boletín Oficial del Estado (BOE), Ley 41/2002, de 14 de noviembre, básica reguladora de la autonomía del paciente y de derechos y obligaciones en materia de información y documentación clínica (Artículo 5.1 (consolidated text, BOE legislación consolidada, last update published 2023-03-01); see also Artículos 4.1, 5.3, 5.4 and 9.1). Where: Spain. Population: Patients and users of health services in Spain. Published 2002-11-15; retrieved 2026-10-11. Source in Spanish; summarized from our own translation, not an official one.

• Nigeria · Measured outcome · 2013

  In a 2008-09 survey of 114 relatives of neurosurgical patients at one Nigerian service, 80.7% preferred joint disclosure, 3.5% telling only the patient, and about 15% being the only ones told.

  What others could learn: Most relatives in this sample preferred joint disclosure. A team could offer a joint conversation as one option while checking privately what the patient wants.

  Conditions, limits and source

  Conditions that matter:

  Relatives who were present when the news was given; interviews in a hospital setting; clinicians willing to hold a joint conversation. Findings come from a neurosurgical service, not from primary care or oncology.

  Cannot be inferred:

  Not representative of Nigeria or of Africa. The authors present the study as a test of anecdotal belief, not a national rule. Neurosurgical conditions only; not proof of what happens in other illnesses, nor of what people who declined to participate prefer.

  Limits:

  Single institution, single practice. The authors say findings are not totally representative of a highly selectively sampled population. The same paper reports a nearly significant difference (15% of relatives vs 5% of patients, p = 0.06) in wanting to be the only ones told, and that more than three quarters of those relatives feared the patient would be devastated. Patients' own answers come from an earlier paper by the same authors (PMID 22712437), not re-read here.

  Source: Frontiers in Neurology, Breaking bad news to a prospective cross-sectional sample of patients' relatives in a Nigerian neurosurgical service (Results, paragraph reporting Table 3 (PMC full text); abstract Results). Where: Nigeria. Population: 114 relatives and surrogates of patients with grave neurosurgical diagnoses (72.8% female). Published 2013-08-05; retrieved 2026-10-11.

• Argentina · Measured outcome · 2014

  In a prospective study of 99 outpatients with cancer or advanced COPD in Buenos Aires, the authors conclude patients wanted family informed and involved in decisions, but not with a right to withhold information.

  Limits: Abstract only

  What others could learn: Patients can want their family involved and informed while still wanting the right to full information themselves. A team can ask separately what the patient wants to know, what they want family to know and whether family may speak for them.

  Conditions, limits and source

  Conditions that matter:

  Outpatient setting with time for a preferences conversation; clinicians able to document patient-set limits on family access.

  Cannot be inferred:

  Not representative of Argentina or Latin America. Says nothing about patients who are too ill to be asked, or about legal rules. Most of the study participants wanted all available information, but this does not show what happens in practice.

  Limits:

  Abstract only; full text not read. The abstract is partly garbled: it gives 40.4% as 'a majority' preferring collaborative decisions and ends the conclusion mid-list, so the decision-role breakdown is not usable here. Two hospitals, one city, small sample, patients who attended outpatient visits.

  Source: Internal Medicine Journal (Royal Australasian College of Physicians), Examining patients' preferences for participation in clinical decision-making: the experience in a Latin American chronic obstructive pulmonary disease and cancer outpatient population (PubMed abstract, Conclusions). Where: Argentina. Population: 99 outpatients (55 with cancer, 44 with COPD). Published 2014-03; retrieved 2026-10-11.

• Australia and New Zealand · Measured outcome · 2020

  In a survey of 206 medical oncologists in Australia and New Zealand, family members requesting that prognostic information not be discussed was the most frequently reported barrier to discussing expected survival time (57%).

  Limits: Abstract only

  What others could learn: A family asking for silence is a common clinician-reported obstacle to prognosis talk. A service could decide in advance how to ask the patient privately what they want to know, and how to record that exchange, since documentation was inconsistent in this survey. The survey did not test any such routine.

  Conditions, limits and source

  Conditions that matter:

  Clinician training in communicating prognosis (71% had some), time for a private conversation with the patient, and charting habits that capture what was discussed. Interpreter access and legal rules on information sharing are not described in the abstract.

  Cannot be inferred:

  Does not show how often families make these requests, what patients wanted, or whether granting or declining a request changes outcomes. Not representative of all oncologists. Says nothing about any cultural or religious group or about legal rules in either country.

  Limits:

  Abstract only; full text not read. The response rate is not in the abstract. These are clinicians' reports of barriers, not observed consultations, and the abstract does not say how often families actually make such requests or how oncologists responded. Australia and New Zealand are not reported separately. The publication date is the PubMed issue month. The same abstract reports that 20% always documented prognostic discussions in the record and 11% in letters to other doctors; those figures are not part of the quoted passage.

  Source: NHMRC Clinical Trials Centre, University of Sydney, and colleagues (Internal Medicine Journal), Communicating prognostic information: what do oncologists think patients with incurable cancer should be told? (PubMed abstract, Results). Where: Australia and New Zealand. Population: 206 medical oncologists who completed the survey (median age 40, 51% female, 22% trainees; 71% had completed specific training on communicating prognosis). Published 2020-12; retrieved 2026-10-11.

• Iran · Measured outcome · 2014

  In a questionnaire survey of 1,226 cancer patients at 11 centers in Iran, 565 were aware of their disease at diagnosis and 878 by interview; 980 were willing to receive information about it.

  Limits: Abstract only

  What others could learn: Awareness rose between diagnosis and interview in this sample, so many patients learned of their illness after it was diagnosed. A team can ask early what each patient wants to know and revisit the question, rather than assuming that silence reflects the patient's wishes.

  Conditions, limits and source

  Conditions that matter:

  Staff time to ask each patient directly, a way to record the answer, and a plan for what family members are told. The abstract does not describe the disclosure practices of the centers.

  Cannot be inferred:

  Not representative of Iran. Does not show why patients were not told, whether clinicians or families decided, or what the law or professional rules say. Not comparable with figures from other countries, and it does not describe the wishes of any religious or cultural group.

  Limits:

  Abstract only; full text not read. The printed percentages do not match the counts over 1,226 (for example 565 of 1,226 is about 46%), and the abstract gives no denominators, so the claim uses counts. The title says national, but the abstract names only 11 centers and mentions Shiraz and Hamadan, so coverage of the country is not established. No data collection dates in the abstract. Participants were patients willing to take part. The abstract reports awareness was associated with age under 50, female gender, some cancer types and care city.

  Source: Shahid Beheshti University of Medical Sciences and Ministry of Health and Medical Education authors (Archives of Iranian Medicine), Attitude of cancer patients toward diagnosis disclosure and their preference for clinical decision-making: a national survey (PubMed abstract, Results). Where: Iran (11 cancer centers). Population: 1,226 patients with cancer, aged over 15 years, who were willing to participate. Published 2014-04; retrieved 2026-10-11.

• Germany · Reported experience · 2026

  In interviews with 23 patients with advanced cancer at three German hospitals, participants differed in how much prognostic information they wanted: some wanted comprehensive explanations, others preferred limited detail.

  What others could learn: Patients in this sample differed in how much they wanted to know, and some linked continuing treatment to receiving prognostic information. Participants said physicians should explore how much information a patient wishes to receive, repeat conversations over time, and use plain language. A team could ask early and again later what level of detail the person wants, and who else should hear it.

  Conditions, limits and source

  Conditions that matter:

  Time for repeated consultations, plain-language explanation, and a way to note each patient's stated preference and revisit it. The study sat inside a German multicenter project; funding and clinician training are not part of the finding.

  Cannot be inferred:

  Not representative of Germany or of patients with other cancers or earlier stages. Interviewees were patients who agreed to be interviewed; the study did not ask about relatives' requests to withhold information, and it does not show how often patients prefer limited detail. Describes participants only, not any culture, nationality or religion.

  Limits:

  The authors note selection bias (patients with high distress may be underrepresented), some short interviews that limit depth, and recall bias in retrospective self-reports. Lung cancer made up 82.6% of the sample. Interviews took place within ongoing treatment relationships. Interview dates are not given in the text read.

  Source: Technical University of Munich and partner university hospitals (BMC Palliative Care), Medical information and decision-making in palliative cancer: a qualitative study of patients' perceptions, needs, and preferences regarding physician communication (PMC full text, Results, "Preferences for prognostic information varied"). Where: Germany (Halle, Heidelberg, Bochum). Population: 23 adults (mean age 65.3, range 43 to 75; 43.5% women) with stage IV esophageal or lung cancer or advanced liver cancer who were receiving systemic therapy. Published 2026-08-05; retrieved 2026-10-11.

• United States · Reported experience · 2023

  In interviews with 20 Latino adults with advanced cancer at one New York medical center, 10 expressed a desire to involve family in treatment decisions; one said family could give opinions but the decision would be theirs.

  What others could learn: Patients who may want family involved can still say the decision is theirs, so a team could ask what role each person wants relatives to play and record the answer. Participants who accepted that their cancer was incurable linked this to clear, direct communication from their oncologist and to their own beliefs, and seven who believed their cancer curable asked for open, candid communication.

  Conditions, limits and source

  Conditions that matter:

  Time to ask the patient, ideally in the language they choose (half of the interviews were in Spanish), and a way to include relatives at the patient's request. Bilingual staff conducted recruitment and interviews.

  Cannot be inferred:

  Not representative of Latino patients or of the United States, and not a rule about any cultural group: it describes these 20 participants at one center. Does not show whether any family asked that information be withheld, or how clinicians responded. Does not show what these patients wanted to know about prognosis beyond the quoted themes.

  Limits:

  Small sample (20 of 39 approached agreed) drawn from several Latino backgrounds, so subgroup differences could not be examined. Secondary data, so no causal inference. Spanish interviews were translated into English through a certified forward-backward process; quotations are as published. In the survey, 85.0% (17) did not believe their illness was terminal and 70.0% (14) believed it was curable; this record does not rest on those figures.

  Source: Ponce Health Science University and Fred Hutchinson Cancer Center (Palliative Care and Social Practice), Latino advanced cancer patients' prognostic awareness and familial cultural influences on advance care planning engagement: a qualitative study (PMC full text, Results, "Varying end-of-life decision-making and treatment preferences"). Where: United States (New York, one medical center). Population: 20 Latino adults with advanced cancer (mean age 56; 55% women; 45% Puerto Rican; interviews in English n=10 and Spanish n=10). Published 2023-08-30; retrieved 2026-10-11.

• The sourced examples include guidance, measured outcome, policy, reported experience. Each quote was matched to the source text; that is not independent expert review.
• The prompts and fictional case are original. They have not been tested with patients, caregivers or clinicians.
• Whether this workflow helps anyone is an open research question.
• Content is in English. Interface translations are not reviewed for this topic.