Your First Right:
Informed Consent
A Right, Not a Formality
Informed consent is not the act of signing a piece of paper. It is your legal right to receive a full explanation — in plain language — of any proposed treatment, and to accept or refuse it freely. No one can treat you without it.
Required by Law
Every state in the U.S. requires healthcare providers to obtain informed consent before treatment. This right is grounded in the legal principle of bodily autonomy — the idea that no one may do anything to your body without your permission.
B — Benefits
What are the expected benefits of this treatment or procedure? How likely are they? What does success look like, and over what time frame?
R — Risks
What are the risks or possible side effects? How common are they? What is the worst-case outcome, and how would it be managed?
A — Alternatives
Are there other treatment options available? What are their benefits and risks compared to what is being proposed? Is watchful waiting an option?
I — Intuition
What does your gut tell you? Your instinct matters. If something feels wrong or unclear, you have the right to pause, ask more questions, or seek a second opinion.
N — Nothing
What happens if you do nothing? Sometimes the best choice is to wait, to gather more information, or to decline treatment altogether. You always have that right.
Capacity
The ability to understand information about a medical decision and to communicate a choice. Capacity can change over time and is assessed by your treating physician — not by a court.
Competency
A legal determination, made by a judge, that a person is unable to make decisions for themselves. Unlike capacity, competency is a formal court ruling with significant legal consequences.
Advance Directive
A legal document that records your healthcare wishes in the event you become unable to speak for yourself. It typically includes a living will and a healthcare proxy designation.
Healthcare Proxy
A person you legally designate to make medical decisions on your behalf if you lose the capacity to make them yourself. Also called a healthcare agent or durable power of attorney for healthcare.
POLST / MOLST
A physician order — not merely a directive — that translates your end-of-life wishes into actionable medical instructions. Required for DNR orders and used primarily in serious illness.
Bodily Autonomy
The principle that every person has the right to control what happens to their own body. It is the ethical and legal foundation of informed consent, advance directives, and the right to refuse treatment.
Why This Matters
Every year, thousands of Americans receive medical treatments they did not understand, did not want, or were never meaningfully asked about. Families are left to make impossible decisions without knowing what their loved one would have chosen — because the conversation never happened.
Informed consent is where that changes. It is the first and most fundamental right in healthcare, and it is the gateway to every other decision in this guide — from naming a healthcare proxy to documenting your end-of-life wishes.
If you understand nothing else from this process, understand this: no one may do anything to your body without your knowledge and your permission. That right does not expire. It does not diminish with age. And it cannot be taken from you without due process of law.
Before It's Too Late: The Case for Acting Now
Nancy Cruzan lost her life January 11, 1983. She was finally declared dead on December 26, 1990 — eight years after a car accident left her in a permanent vegetative state, because no one could prove what she would have wanted.
Her family fought through state courts and the U.S. Supreme Court for the right to remove her feeding tube. The Court's ruling established four critical principles:
- The U.S. Constitution does not guarantee a right to die
- The right-to-die is determined by individual states
- A state's interest in preserving life supersedes a patient's right to refuse treatment — without a living will or clear evidence of their wishes
- An incapacitated patient should designate a medical proxy with a medical power of attorney
Fewer than 4 in 10 Americans have an Advance Directive — a number that has remained stubbornly stable for thirty years, even among people with terminal diagnoses, even among elderly people in nursing homes.
Anyone of us could be a Nancy Cruzan — connected to tubes, in ICU, with no prospect of recovery, and no document to speak for us. The lack of an Advance Directive may forebode a painful, undesirable, and expensive dying for both patient and loved ones. That is what this pathway is designed to prevent.
Next Step: Quality of Life Reflections
Now that you understand your foundational right to informed consent, the next step is to reflect on what quality of life means to you — the values, activities, and relationships that make your life worth living. These reflections will guide every medical decision that follows.
Continue to Step 2 →