Shared decision-making is a collaborative process in which clinicians and patients combine the best available evidence with the patient’s goals, preferences, circumstances, and values. Aligning medical decisions with personal values therefore requires more than choosing the treatment with the highest average benefit: it involves clarifying what outcomes matter most, comparing reasonable options, understanding risks and uncertainty, and communicating a decision that the patient can accept. This approach is especially relevant when treatments offer different trade-offs, such as longer survival versus greater treatment burden, or symptom relief versus side effects. The Agency for Healthcare Research and Quality identifies shared decision-making as a core component of patient-centered care, while decision-aid research shows that patients who use structured aids generally have better knowledge and more realistic expectations.
Shared Decision-Making Defines Values-Aligned Medical Care
Shared decision-making is commonly defined as a process in which healthcare professionals and patients make decisions together after discussing the available options, the evidence for each option, and the patient’s values and preferences. Charles, Gafni, and Whelan described the model as an interaction requiring at least two participants, information exchange, recognition that a decision exists, and agreement on a course of action. The model differs from both paternalism, in which the clinician makes the decision, and consumer choice, in which the patient is expected to decide without professional guidance.
The central attribute of shared decision-making is the integration of clinical evidence with personal meaning. Medical evidence can estimate likely benefits and harms, but it cannot determine whether a particular outcome is worth the burden for an individual. For example, one patient may prioritize preserving independence, another may prioritize maximizing longevity, and another may place greatest importance on avoiding hospitalization, cognitive impairment, pain, or financial strain.
Evidence-Based Options and Personal Preferences
Evidence-based medicine combines research findings, clinical expertise, and patient values. The National Academy of Medicine has emphasized that high-quality care should be effective, safe, timely, efficient, equitable, and patient-centered. In practice, this means clinicians should explain what is known, distinguish strong evidence from uncertainty, and identify which parts of the decision depend on the patient’s priorities.
Evidence is most useful when presented in understandable absolute terms. Saying that a treatment “cuts risk by 50 percent” can be misleading if the risk falls from 2 percent to 1 percent. A clearer explanation states the starting risk, the expected change, the time period, and the uncertainty. Natural frequencies, such as “1 fewer person out of 100,” often help patients compare options more accurately.
Informed Consent as a Related Decision Process
Informed consent is a related but distinct concept. It confirms that a patient with decision-making capacity has received relevant information about a proposed intervention, including its purpose, benefits, risks, alternatives, and the option of declining treatment. Shared decision-making is broader because it can begin before a specific intervention is selected and focuses on deliberation, priorities, and mutual understanding.
Consent should not be treated as a signature alone. The American Medical Association and professional ethics guidance generally view consent as a communication process. A useful validation step is teach-back: the patient explains in their own words what the options are, what is uncertain, and what choice they are considering. Teach-back tests the clarity of the explanation rather than the patient’s intelligence or memory.
Values Clarification and Preference-Sensitive Care
Values clarification is the deliberate process of identifying which outcomes and burdens matter most to a patient. Preference-sensitive care is appropriate when more than one medically reasonable option exists and the best choice depends substantially on personal priorities. Examples include cancer screening intervals, surgery versus medication, dialysis planning, childbirth options, long-term ventilation, and treatment intensity near the end of life.
Decision aids support this process by presenting options, probabilities, trade-offs, and values exercises in a structured format. A Cochrane review of patient decision aids found that they improve patients’ knowledge, reduce decisional conflict related to inadequate information, and help people form expectations that are more consistent with the available evidence. They are not intended to replace clinical advice or force a particular answer.
Goals-of-Care Conversations Translate Values Into Treatment Choices
Goals of care are the outcomes a person wants medical treatment to pursue. They may include living as long as possible, remaining at home, maintaining the ability to communicate, attending important family events, preserving independence, controlling symptoms, or avoiding burdensome interventions. Goals-of-care conversations translate abstract values into practical guidance for current and future decisions.
These conversations are particularly important for serious illness, because medical conditions can change faster than a person’s ability to communicate. The National Institute on Aging recommends discussing healthcare preferences in advance, identifying a healthcare proxy, and documenting wishes through advance directives. In the United States, the Patient Self-Determination Act requires many healthcare organizations to inform patients about advance directives, although documentation rates remain uneven across populations and care settings.
Advance Care Planning
Advance care planning is an ongoing process of considering possible future decisions, discussing them with trusted people and clinicians, and recording preferences. It may include a living will, designation of a healthcare agent, physician orders for life-sustaining treatment where available, and personal notes explaining what makes life acceptable or unacceptable to the individual.
A document is most useful when it is current, accessible, and discussed with the person expected to make decisions. Preferences can change after a new diagnosis, major functional decline, or a change in family circumstances. Reviewing an advance plan periodically is therefore more reliable than completing it once and never revisiting it.
Capacity, Surrogate Decisions, and Cultural Context
Decision-making capacity is the ability to understand relevant information, appreciate how it applies personally, reason about options, and communicate a choice. Capacity is decision-specific and can fluctuate; a diagnosis such as dementia or a mental health condition does not automatically eliminate it. When a patient lacks capacity, a legally authorized surrogate should use substituted judgment when the patient’s wishes are known and otherwise use the patient’s best interests.
Values are also shaped by culture, religion, family relationships, disability experience, language, and previous encounters with healthcare. Clinicians should avoid assuming that a group’s background determines an individual’s preference. Professional interpreters, culturally responsive communication, and direct questions such as “What does a good outcome look like for you?” help distinguish personal values from stereotypes.
A Practical Framework Aligns Medical Decisions With Personal Values
Values-aligned decision-making works best as a repeatable conversation rather than a single question. The following framework can be used before an appointment, during a clinical visit, or when reviewing a serious diagnosis.
- Identify the decision. Ask what choice must be made, when it must be made, and whether waiting is medically reasonable.
- Clarify the options. Request a comparison of all reasonable choices, including doing nothing, watchful waiting, palliative treatment, or a second opinion when appropriate.
- Understand the outcomes. Ask about benefits, risks, side effects, recovery time, uncertainty, and the likelihood of achieving the outcome that matters most.
- Name personal priorities. Consider independence, longevity, comfort, function, family responsibilities, spiritual commitments, work, cost, and willingness to undergo procedures.
- Check practical constraints. Discuss transportation, caregiving, insurance, medication access, health literacy, work obligations, and availability of follow-up care.
- Use teach-back. Explain the decision in your own words and ask the clinician to correct misunderstandings.
- Make or defer the decision. Some choices are time-sensitive; others can be revisited after more information, a specialist consultation, or discussion with family.
- Document the plan. Record the chosen option, reasons for it, warning signs, follow-up date, and circumstances that would prompt reconsideration.
Questions Patients Can Ask
Patients do not need medical training to participate effectively. The following questions can make a consultation more informative:
- What decision are we making, and how soon must it be made?
- What are my reasonable options, including the option of waiting or not having treatment?
- What is the likely benefit in absolute terms?
- What are the most serious and most common harms?
- How might each option affect my daily function and independence?
- What would you recommend for someone with my goals, and why?
- What information is uncertain or based on limited evidence?
- Can I speak with another specialist or use a decision aid?
Questions Clinicians Can Ask
Clinicians can elicit values without directing patients toward a preferred answer. Useful prompts include “What are you hoping this treatment will allow you to do?”, “What worries you most about this option?”, “Which possible side effect would be hardest for you to live with?”, and “How much treatment would feel like too much?” Asking these questions early can prevent a technically successful treatment from producing an outcome the patient would not have chosen.
Clinical Examples Show Why Values Matter
Localized Prostate Cancer
Localized prostate cancer illustrates preference-sensitive care. Surgery, radiation, and active monitoring can involve different effects on urinary control, sexual function, bowel function, treatment burden, and anxiety. The long-term ProtecT trial, reported in the New England Journal of Medicine, found very high prostate-cancer-specific survival at 15 years across monitoring, surgery, and radiotherapy groups, while differences emerged in disease progression and treatment-related effects. The appropriate choice therefore depends not only on cancer characteristics but also on how a patient weighs longevity, surveillance, side effects, and peace of mind.
Serious Illness and Hospital Treatment
For a person with advanced heart, lung, kidney, or neurologic disease, a values-aligned plan may distinguish between treatments that prolong life and treatments that improve comfort or function. A patient who strongly values remaining at home may prefer home-based palliative care when clinically available, while another may prioritize every potentially life-prolonging intervention. Neither preference is inherently universal; the ethical task is to ensure that the plan reflects the informed patient rather than default institutional routines or family pressure.
Screening and Prevention
Screening decisions also require value-sensitive discussion because benefits may occur years later while false positives, invasive follow-up tests, anxiety, and overdiagnosis can occur sooner. The U.S. Preventive Services Task Force frequently uses shared decision-making for recommendations in which the balance of benefits and harms varies according to age, risk factors, and preferences. A screening decision should therefore include the patient’s willingness to undergo follow-up procedures and treatment if an abnormality is found.
Barriers and Safeguards Improve the Quality of Shared Decisions
Shared decision-making can be limited by short appointments, complex medical language, unequal access to specialists, low health literacy, cognitive or sensory barriers, clinician assumptions, and unequal power between patients and institutions. Health disparities can also affect which options are realistically available. Offering an ideal choice without addressing transportation, cost, caregiving, or medication access does not produce genuinely patient-centered care.
Several safeguards make the process more reliable:
- Use plain language, absolute risks, visual aids, and professional interpreters.
- Provide decision aids that disclose their evidence sources and conflicts of interest.
- Allow time for reflection when the decision is not urgent.
- Invite a trusted support person while preserving the patient’s independent voice.
- Offer second opinions for major, preference-sensitive, or irreversible decisions.
- Record the patient’s goals and revisit them when the illness or treatment changes.
- Separate a recommendation from coercion by explaining the reasoning and acknowledging reasonable alternatives.
Conclusion: Values-Aligned Care Makes Medical Decisions More Personal and More Ethical
Shared decision-making connects clinical evidence with the outcomes a patient considers meaningful. Informed consent establishes understanding and permission; values clarification identifies priorities; goals-of-care conversations translate those priorities into treatment aims; and advance care planning preserves them when future decisions become difficult. Decision aids, absolute-risk communication, teach-back, interpreters, and second opinions can make the process more accurate and equitable.
The broader implication is that good medical care cannot be measured only by disease control or procedure completion. It should also be judged by whether patients understand their choices, whether treatment reflects their goals, and whether burdens are proportionate to the outcomes they value. Before a major medical decision, write down the outcomes that matter most, ask for a balanced comparison of reasonable options, and schedule a follow-up conversation if more time or information is needed.
Sources: Agency for Healthcare Research and Quality, The SHARE Approach: A Model for Shared Decisionmaking; Charles C, Gafni A, Whelan T, Shared decision-making in the medical encounter: what does it mean?, Social Science & Medicine, 1997; Stacey D et al., Decision aids for people facing health treatment or screening decisions, Cochrane Database of Systematic Reviews, 2017; National Academies of Sciences, Engineering, and Medicine, Crossing the Global Quality Chasm: Improving Health Care Worldwide, 2018; National Institute on Aging, Advance Care Planning; U.S. Preventive Services Task Force, Recommendation Statements and Shared Decision Making; Hamdy FC et al., Fifteen-Year Outcomes after Monitoring, Surgery, or Radiotherapy for Prostate Cancer, New England Journal of Medicine, 2023; American Medical Association, Code of Medical Ethics, Informed Consent.
