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Scrollytelling · Section 06

Questions to ask your medical team.

Five questions that bring the data, options, and decisions in this guide into a specific clinical situation. Each is paired with what a useful answer sounds like, and a brief note on why the question matters.

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Question 01 · Prognosis

Ask for the specific prognosis.

Population averages have limited value for individual decisions. Asking about the patient's specific clinical situation — not generic figures — produces information that can be acted on.

A useful answer will be a range rather than a single number, will acknowledge uncertainty, and will name the timeframe (days, weeks, months).

Source: Christakis NA, Lamont EB. Extent and determinants of error in doctors' prognoses in terminally ill patients. BMJ. 2000;320:469. Glare P et al. Systematic review of physicians' survival predictions in terminally ill cancer patients. BMJ. 2003;327:195.
Question 02 · Outcomes

Ask what each option will actually accomplish.

The choice between options is not abstract. Each one produces a different range of outcomes for this specific patient. Asking what each will accomplish — and not accomplish — forces the conversation onto concrete ground.

A useful answer separates "alive" from "alive and able to come home" from "alive and able to return to prior activities."

Source: Wright AA et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300:1665. Mack JW et al. Associations between end-of-life discussion characteristics and care received near death. J Clin Oncol. 2012;30:4387.
Question 03 · Trade-offs

Ask about the burden of each option.

Every intervention has costs as well as benefits: time on machines, pain, disorientation, time away from home, financial impact, family caregiving demands. These are part of the decision, not separate from it.

A useful answer is honest about what daily life will look like under each option — not just whether the patient will survive.

Sources: Ehlenbach WJ et al. Epidemiologic study of in-hospital cardiopulmonary resuscitation in the elderly. NEJM. 2009;361:22. Kelley AS et al. The burden of health care costs for patients with dementia in the last 5 years of life. Ann Intern Med. 2015;163:729.
Question 04 · Recommendation

Ask for a recommendation.

Patients and families often want the medical team's recommendation but feel hesitant to ask. Asking directly gives the team explicit permission to share clinical judgment — which is often more useful than presenting all options neutrally and waiting for the patient to choose.

A useful answer ties the recommendation to the patient's stated values and clinical situation, rather than expressing a generic preference.

Sources: White DB et al. Toward shared decision making at the end of life in intensive care units. Arch Intern Med. 2007;167:461. Quill TE, Brody H. Physician recommendations and patient autonomy. Ann Intern Med. 1996;125:763.
Question 05 · Reassessment

Ask when the plan should be revisited.

Code status decisions are not permanent. As the clinical situation evolves — improvement, decline, new diagnoses, time in the hospital — the right plan changes. Asking when the team plans to revisit the decision creates a built-in checkpoint and signals that updating the plan is normal, not a reversal.

A useful answer names a specific marker: a number of days, a clinical event, a response (or non-response) to treatment.

Sources: Quill TE, Holloway R. Time-limited trials near the end of life. JAMA. 2011;306:1483. Bernacki RE, Block SD. Communication about serious illness care goals. JAMA Intern Med. 2014;174:1994.

Five questions, asked deliberately, change the shape of the conversation.

None of these questions require medical training to ask. They invite the medical team to share specific clinical judgment rather than offering options menu-style. They make space for honest answers about uncertainty, trade-offs, and recommendations — the components of a real shared decision.

The data, options, and tools elsewhere in this guide are inputs to this conversation. The conversation itself is where the decision happens.

Christakis BMJ 2000 · Glare BMJ 2003 · Wright JAMA 2008 · Mack JCO 2012 · Ehlenbach NEJM 2009 · Kelley Ann IM 2015 · White Arch IM 2007 · Quill JAMA 2011 · Bernacki JAMA IM 2014