One day you’re debating where to get lunch, and the next you’re being asked whether your dad would want a breathing machine.
Surrogate decision-making can feel like being handed the world’s most stressful remote controlexcept none of the buttons are labeled,
the screen keeps buffering, and everyone in the room has a different opinion about what show “he’d want to watch.”
In U.S. healthcare, when a patient can’t make medical decisions, someone else may need to speak for them. That “someone” (a surrogate)
might be officially appointed, automatically selected by state law, orwhen life gets messyidentified through hospital processes.
And while the idea sounds straightforward (“Just decide what they’d want!”), the reality is a thicket of ethics, emotions, family dynamics,
and medical uncertainty.
This guide breaks down what surrogate decision-making is, why it’s so hard, and how families and clinicians can make choices that are
clearer, kinder, and more aligned with what the patient would actually value.
What is surrogate decision-making (and when does it happen)?
Surrogate decision-making is the process of making healthcare choices for a person who lacks decision-making capacity. Capacity is a
clinical determination (can the patient understand, appreciate, reason, and communicate a choice right now?), and it can change over time.
That’s why a person might be able to decide in the morning and be unable to decide in the eveningespecially during severe illness,
delirium, sedation, or brain injury.
Who can be a surrogate?
In the U.S., a surrogate typically falls into one of three categories:
-
A chosen decision-maker (often called a health care proxy, agent, or durable power of attorney for health care) named in an
advance directive. -
A default surrogate identified by state law when no agent was appointed (often a spouse/partner, then adult children,
parents, siblings, and sometimes a close frienddepending on the state). -
A court-appointed guardian when legal proceedings are needed (usually slower, more formal, and often used when there’s no
appropriate surrogate or serious conflict).
The key point: the “right” surrogate isn’t always the loudest voice, the nearest relative, or the person with the most opinions in the
group chat. Ideally, it’s the person who best understands the patient’s values and can stay steady under pressure.
Why the burden feels so heavy
Surrogates often describe the role as emotionally exhaustingand it’s not hard to see why. They’re asked to make high-stakes decisions
while worried, sleep-deprived, and flooded with new medical information. Meanwhile, the patient they love may look nothing like the person
they knew a week ago. It can be disorienting.
Common stressors that make “just decide” unrealistic
- Uncertainty: Prognosis is often unclear, especially early in a crisis.
- Time pressure: Some decisions can’t wait for everyone to fly in, process feelings, and hold a family summit.
- Guilt and fear: Many surrogates worry they’ll “cause” a death by limiting treatmenteven when the illness is the cause.
- Family conflict: Different siblings may remember different versions of what the patient said or valued.
- Role confusion: Surrogates sometimes think they must choose what they would want, rather than what the patient would want.
- Moral distress: Feeling stuck between “do everything” and “don’t let them suffer” can be agonizing.
Add in medical jargon, a rotating cast of clinicians, and the emotional intensity of hospitals, and you get a perfect storm where even
reasonable people can feel lost.
The ethical “rulebook” behind surrogate decisions
Ethics in surrogate decision-making isn’t about finding a perfect answer. It’s about using a structured approach that respects the patient
as a personespecially when the patient can’t speak for themselves.
The usual hierarchy: wishes → substituted judgment → best interests
-
Known wishes (the gold standard): If the patient clearly stated preferencesverbally or in writingthose should guide care.
This includes advance directives and documented conversations. -
Substituted judgment: If specific wishes aren’t documented, the surrogate tries to choose what the patient would decide,
based on the patient’s values, beliefs, and past statements. -
Best interests: If the patient’s preferences are truly unknown (or the patient never had capacity), decisions should focus on
what most likely promotes the patient’s well-beingbalancing benefits, burdens, comfort, dignity, and overall outcomes.
In real life, these standards overlap. A person might have a clear value (“I never want to live hooked up to machines long-term”) but no
explicit preference about a specific treatment. That’s where values-based substituted judgment helps: you’re not guessing a vote; you’re
honoring a life.
A key ethical trap: the “menu illusion”
Sometimes the healthcare system accidentally makes surrogates feel like they’re picking from a menu of suffering:
“CPR or no CPR?” “Ventilator or no ventilator?” “Dialysis or no dialysis?” That framing can sound like the surrogate is choosing life or death.
A better framing links treatments to goals: “Would your mom prioritize living longer even if it meant prolonged dependence, or would she
prioritize comfort and avoiding burdensome interventions?”
The legal landscape in the U.S. (in plain English)
Surrogate decision-making is shaped by state law, and the details vary. Many states have “default surrogate” statutes that set a priority
list (often spouse/partner first, then adult children, then parents, then siblings, and sometimes close friends). Some states add
requirements like “reasonably available” or “majority of adult children” for certain decisions.
This variability is why clinicians often ask about legal documents and family relationships early. It’s not paperwork obsessionit’s making
sure the right person is empowered to decide.
When no surrogate is clear
If there’s no appointed agent and the family situation is unclear or disputed, clinicians may rely on hospital policy, ethics consultation,
or (in some cases) seek guardianship. Ethics committees can help identify an appropriate decision-maker and reduce conflict by clarifying
standards and supporting communication.
Note: This article is informational and not legal advice. If you’re dealing with an urgent case, ask the care team or hospital social worker how your state handles surrogate priority and documentation.
A practical framework for surrogates: how to make the next decision
When you’re the surrogate, you’re not expected to be a physician, ethicist, and family therapist all at once (even if it feels like the job
description was written by a prankster). A practical process can reduce panic and improve clarity.
Step 1: Name the decisionspecifically
“Do we keep treating?” is too vague. Instead: “Do we start dialysis today?” “Do we place a feeding tube?” “Do we attempt CPR if the heart
stops?” Precise questions reduce miscommunication.
Step 2: Ask for prognosis in ranges, not fortune-telling
A helpful question is: “What are the best-case, worst-case, and most likely outcomes?” This framing gives you usable information without
pretending medicine can predict the future with GPS accuracy.
Step 3: Understand the goal of each treatment
Treatments are tools, not trophies. Ask:
“Is this meant to cure?” “Buy time?” “Manage symptoms?” “Bridge to recovery?” A ventilator can be a short-term bridgeor a long-term
destination. Knowing which one the team expects changes everything.
Step 4: Translate the patient’s values into today’s reality
Values sound abstract until they’re not. Helpful prompts:
- “What made life feel like their life?” (independence, being at home, faith practices, being able to recognize family, etc.)
- “What outcomes would they consider unacceptable?” (permanent nursing home placement, inability to communicate, constant pain, etc.)
- “When they talked about serious illness, what did they fear most?” (suffering, being a burden, losing dignity, dying alone)
Step 5: Make a values-aligned choicethen document it
Ask the team to document: the decision, the reasoning, and what values it reflects. This helps continuity when clinicians rotate and can
reduce later conflict.
Step 6: Use time-limited trials when you’re unsure
A time-limited trial can be a relief valve: “Let’s try this treatment for 48–72 hours with clear markers of improvement. If those markers
don’t happen, we’ll revisit the plan.” This transforms “forever decisions” into “evaluate-and-adjust decisions.”
Step 7: Ask for a recommendation (yes, it’s allowed)
Many surrogates think they must decide alone. You can ask: “Based on what you know about my dad and what you’re seeing medically, what would
you recommend?” Clinicians should still respect autonomy and legal standards, but a thoughtful recommendation can reduce the sense that the
surrogate is being abandoned with the burden.
Specific examples: what complexity looks like in real cases
Example 1: The “he said he never wanted machines” dilemma
A 72-year-old with severe pneumonia is sedated and on a ventilator. Years ago he told his daughter: “Don’t keep me alive on machines.”
But the ICU team thinks he has a reasonable chance of recovering with a week of support.
A values-based approach clarifies: Was his statement about permanent dependence and poor quality of life, or about any short-term
intensive care? Often, the best match is a time-limited trial with clear milestoneshonoring his dislike of prolonged dependence while still
allowing a meaningful chance of recovery.
Example 2: The sibling standoff
A patient with advanced dementia develops kidney failure. One child wants dialysis (“Fight!”). Another wants comfort care (“She wouldn’t want this.”).
Both believe they’re protecting their parent.
The ethical question shifts from “who’s right?” to “what did the patient value?” Family meetings, palliative care consultation, andif neededethics
support can help translate values into a plan that’s less about winning and more about aligning care with the person’s life story.
Example 3: No paperwork, no clear family, high stakes
A middle-aged patient arrives unconscious after a stroke. No advance directive. No nearby relatives. A longtime friend insists, “I know what she’d want.”
Some states allow close friends as default surrogates; others don’t. Hospitals may involve ethics or legal services to determine who can decide.
This case highlights why advance care planning is a gift: it protects the patient’s autonomy and spares loved ones from unnecessary procedural chaos.
When families and clinicians disagree: how conflict is handled
Conflict doesn’t always mean someone is unreasonable. Sometimes it means grief is speaking in different dialects. Still, unresolved conflict can lead
to prolonged suffering, moral distress, and care that drifts away from the patient’s values.
Tools that can help defuse conflict
- Structured family meetings: A single, planned conversation beats five hallway updates and twelve anxious phone calls.
- Palliative care consultation: Not “giving up,” but clarifying goals, symptoms, and what matters most.
- Ethics consultation: Helpful when there’s uncertainty about decision standards, surrogate authority, or when conflict stalls care.
- Mediation-style communication: Naming shared goals (“We all want what’s best for her”) before debating treatments.
- Time-limited trials: A neutral bridge when the family is split between “more time” and “less burden.”
Ethics consultation, in particular, can offer a structured way to address disputes about life-sustaining treatmenthelping clarify patient values,
medical realities, and ethical standards. It’s like bringing in a skilled translator when everyone is speaking the same language but somehow still
misunderstanding each other.
Advance care planning: the best way to lighten the burden
If surrogate decision-making is the emergency plan, advance care planning is the fire prevention system. It doesn’t eliminate hard decisions,
but it makes them more values-aligned and less chaotic.
High-impact steps that actually help
- Name a health care proxy: Choose someone who can stay calm, communicate well, and advocate for your wishes.
- Discuss values, not just procedures: “I want comfort over time” is often more useful than a checklist of treatments.
- Write it down: Use advance directives and ensure they’re accessible (share with family and your clinicians).
- Revisit after major life changes: New diagnoses, new relationships, or a changed outlook are good times to update documents.
- Consider POLST when appropriate: For people with serious illness or advanced frailty, medical orders can clarify emergency treatment preferences.
Importantly, advance care planning isn’t a one-time paperwork event. It’s an ongoing conversationmore like maintaining a garden than buying a houseplant
and hoping for the best.
For clinicians: don’t outsource the hardest part to families
Families often hear, “What do you want us to do?” and interpret it as, “Choose whether your loved one lives.” That can be devastating.
A better approach is shared decision-making: clinicians provide medical expertise, likely outcomes, and clear recommendations; surrogates provide the
patient’s values and preferences; together they aim for value-concordant care.
Clinician practices that reduce surrogate distress
- Frame choices around goals: “What should we aim for?” before “Which treatment do you choose?”
- Offer a professional recommendation: Especially when options have very different burdens and benefits.
- Normalize uncertainty: “We can’t know for sure, but here’s what we can watch for.”
- Use plain language: “Heart massage and electric shocks” communicates CPR better than acronyms alone.
- Support the surrogate emotionally: A simple “This is hard, and you’re not alone in it” can matter.
Conclusion: choosing with love, structure, and humility
Surrogate decision-making is one of the hardest jobs most people will ever doand it usually comes with zero training and terrible sleep.
But a structured approach helps: clarify the decision, understand the prognosis, connect treatments to goals, and anchor choices in the patient’s
values and known wishes. When conflict or uncertainty rises, use support systems like palliative care and ethics consultation. And whenever possible,
invest in advance care planning before a crisis forces a crash course in medical ethics.
The goal isn’t to make a “perfect” choice. It’s to make a faithful one: a decision that reflects who the patient is, what they value, and what
kind of care would honor their lifeeven when the path is complicated.
Experience Notes: 3 composite stories that show the “burden of choice” up close (about )
The following experiences are composite vignettesblended from common real-world patterns reported by families and cliniciansshared to illustrate how
surrogate decision-making often unfolds.
1) “I don’t want to be the one who decides”
A woman in her early 60s becomes the surrogate for her husband after a massive stroke. In the first family meeting she says, “I can’t do this. I don’t
want to decide if he lives or dies.” What helped wasn’t a flood of informationit was a shift in framing. The team explained that the stroke was the
cause of the crisis, not her decision, and that her role was to represent her husband’s values. They asked, “When he talked about serious illness, what
mattered most to him?” She described his deep fear of living unable to communicate, and his strong preference for being at home. The decision became less
about choosing an outcome and more about choosing a direction: avoid prolonged invasive treatments unlikely to restore the life he valued, prioritize comfort,
and ensure time together. She still cried. But she stopped feeling like the villain in her own story.
2) The sibling debate that wasn’t really about medicine
An older adult with advanced dementia develops repeated infections and stops eating well. Two siblings argue: one wants a feeding tube, the other wants
hospice-focused care. At first the conflict sounds medicalnutrition, aspiration risk, survival. But under the surface, it’s about grief and identity.
The “do everything” sibling equates stopping treatments with abandonment, partly because they weren’t around much in earlier years and now want to “make up
for it.” The other sibling has been the day-to-day caregiver and has watched their parent’s quality of life decline. In a facilitated meeting, the clinician
gently separates love from interventions: “Both of you are trying to care for her. Let’s talk about what her best day used to look like and what she would
consider an acceptable outcome.” That reframing doesn’t erase disagreement, but it turns the volume down. They ultimately choose comfort-focused care with
careful hand-feeding, agreeing to treat reversible discomforts while avoiding procedures that don’t match the parent’s values.
3) The “time-limited trial” that gave everyone permission to breathe
In an ICU, a patient with severe pneumonia needs life support. The family is divided: half believes recovery is possible; half worries about prolonged
suffering. The team proposes a time-limited trial: continue intensive support for 72 hours while watching specific signsoxygen needs, kidney function,
responsiveness. Everyone agrees that if those markers don’t improve, the plan will shift toward comfort and a natural death. The trial doesn’t guarantee a
happy ending. What it does provide is a shared roadmap. The family stops arguing about abstract possibilities and starts focusing on observable goals. When
the patient fails to improve, the decision to step back feels less like “giving up” and more like honoring the agreed planone aligned with the patient’s
values and the medical reality. The burden doesn’t disappear, but it becomes carryable.
