Elederly woman reviews bill of rights on laptop

The Dying Person’s Bill of Rights

Do dying people have rights? Of course they do! I don’t know about you, but before becoming a Death Doula, I rarely considered what those rights might be, nor how they might be different than those of a person in the health care system who wasn’t facing imminent death.

What are Patient’s Rights in Canada?

People who are frail (elderly) or facing life-limiting illnesses – no matter their age – often face enormous challenges. Take a look at the following. You may not have seen this before!

As a patient in Canada, you have the right to:

  • Health care services without discrimination
  • Understand your health condition and the treatments available to you
  • A second opinion
  • Have your Advance Directive*/prior capable wishes respected
  • Have the authority of your Substitute Decision-Maker recognized
  • Accept, refuse, or discontinue medical treatments, and change your mind at any time
  • Decline cardiopulmonary resuscitation (in accordance with a DNR order)
  • Refuse nutrition and hydration by artificial means or any other aspects of care
  • Pain and symptom management
  • Palliative care (including palliative sedation) if it is appropriate for your condition
  • Request an assessment for medical assistance in dying (MAID)
  • View, obtain, amend and limit access to your own health record

You can find a good summary of these rights here.

The Fundamental Rights of a Dying Person

The Dying Person’s Bill of Rights is a wonderful document that most Death Doulas use as a fundamental basis for our work. It was created at a workshop in 1975 and sponsored by the Southwestern Michigan Inservice Education Council. Amelia Barbus, an associate professor of nursing at Wayne State University, facilitated the workshop.

Since then, the Dying Person’s Bill of Rights has been adapted and honoured at hospitals and hospices worldwide and in conjunction with national or territorial constitutions, guidelines and legislation.

It is summarized here: Grief.com, 2022. A more comprehensive version of this bill of rights is found in David Kessler’s book, “The Needs of the Dying.”

  1. I have the right to be treated as a living human being until I die.
  2. I have the right to maintain a sense of hopefulness, however changing its focus may be.
  3. I have the right to be cared for by those who can maintain a sense of hopefulness, however changing this might be.
  4. I have the right to express my feelings and emotions about my approaching death in my own way.
  5. I have the right to participate in decisions concerning my care.
  6. I have the right to expect continuing medical and nursing attention even though “cure” goals must be changed to “comfort” goals.
  7. I have the right not to die alone.
  8. I have the right to be free from pain.
  9. I have the right to have my questions answered honestly.
  10. I have the right not to be deceived.
  11. I have the right to have help from and for my family in accepting my death.
  12. I have the right to die in peace and dignity.
  13. I have the right to retain my individuality and not be judged for my decisions, which may be contrary to beliefs of others.
  14. I have the right to discuss and enlarge my religious and/or spiritual experiences, whatever these may mean to others.
  15. I have the right to expect that the sanctity of the human body will be respected after death.
  16. I have the right to be cared for by caring, sensitive, knowledgeable people who will attempt to understand my needs and will be able to gain some satisfaction in helping me face my death.
Elderly Woman Reviews Bill Of Rights With Lawyer

Ethical Frameworks for the Dying

Do these rights ring true for you? Are there any that you would add? These rights are based on the ethical treatment of dying persons. It’s important to note that there are many models of ethics. Some ethical frameworks are based on doing the most good overall. Some are based on following rules no matter what, and some are based on religious precepts. As much as I would love to explore ethics with you in this blog post, I am afraid it would be a snooze-fest. However, if you are super keen, you might want to explore Kant’s ethics, Ross’s ethics, Natural Law Ethics, and Virtue Ethics.

Still with me? Awesome!

It is important to note that in the Dying Person’s Bill of Rights, the rights do not extend to being provided any kind of care demanded, no matter the cost or scarcity of resources for the treatment.

If you familiarize yourself with the Dying Person’s Bill of Rights, you can be a better advocate for yourself and for those you love.

If you are in an ethical dilemma with an end-of-life issue yourself, you can always book a 30-minute free consultation. I will do my best to help you in the time that we have, and there is no obligation to continue past that initial free consultation.

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