What Is the Dying Person's Bill of Rights?
By CRYSTAL BAI •
The short answer: The Dying Person's Bill of Rights is a statement of the fundamental rights of people at end of life — including the right to be free of pain, to be treated as a living human being, to make decisions about their own care, to die in peace and dignity, and to have their questions answered honestly. Originally published in 1975, it remains a foundational document in hospice and palliative care ethics.
The Rights
The Dying Person's Bill of Rights (Crane, 1975, published in the American Journal of Nursing) states that every dying person has the right to:
- Be treated as a living human being until death
- Maintain a sense of hopefulness — even if it changes in focus
- Be cared for by those who can maintain a sense of hopefulness, even when hope for cure is not realistic
- Express feelings and emotions about approaching death in their own way
- Participate in decisions about their care
- Expect continuing medical and nursing care, even if the goal changes from cure to comfort
- Not die alone
- Be free of pain
- Have honest answers to their questions
- Not be deceived
- Have help from and for their family in accepting their death
- Die in peace and dignity
- Retain individuality and not be judged for their decisions
- Discuss and enlarge their religious and/or spiritual experiences, regardless of the views of others
- Expect the sanctity of the human body will be respected after death
- Be cared for by caring, sensitive, knowledgeable people who will attempt to understand their needs
Why This Document Still Matters
The rights articulated in 1975 remain routinely violated: patients are not given honest information, pain is undertreated, patients die alone in institutions, families are excluded from care decisions, and spiritual needs go unaddressed. The Bill of Rights serves as a standard against which to evaluate the care being provided — and a framework for advocating for better care.
How to Advocate for These Rights
If a dying person's rights are being violated: speak to the attending nurse or physician, request a patient advocate or ombudsman, ask for a palliative care consultation, engage a hospital chaplain or social worker, contact the facility's patient relations department, and — if needed — file a formal complaint with your state health department.
The Role of the Death Doula
Death doulas serve as advocates for the dying person's rights — ensuring their voice is heard in care decisions, advocating for pain management, ensuring they are not left alone if they don't want to be, and helping families understand what their loved one is entitled to.
Frequently Asked Questions
Does a dying person have the legal right to refuse treatment?
Yes. Competent adults have the legal and ethical right to refuse any medical treatment, including life-sustaining treatment. This right is protected by the Patient Self-Determination Act and common law. An advance directive or healthcare proxy can exercise this right on behalf of someone who lacks capacity.
What can I do if my dying loved one is not getting adequate pain control?
Ask the nurse directly for better pain management. Request a palliative care consultation if one isn't already involved. Contact the patient advocate if the medical team is not responding. Pain is undertreated in dying patients far too frequently — advocacy matters.
Does a dying person have the right to know their prognosis?
Yes. Patients have the right to full and honest information about their condition and prognosis. If a physician is withholding this information, the patient (or their proxy) can request a direct conversation. Some patients choose not to know — that is also their right.
What does 'dying with dignity' mean?
Dying with dignity means dying in a way that respects the person's values, physical comfort, relational needs, and individuality — free from unnecessary suffering, not alone (unless desired), and treated as a full human being rather than a medical case.
How does a death doula uphold the Dying Person's Bill of Rights?
Death doulas serve as advocates, witnesses, and guides — ensuring the dying person's preferences are communicated, their pain is addressed, their spiritual needs are honored, and they are not alone. They help the family understand the person's rights and how to advocate effectively.
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