The Dying Patient's Bill of Rights

From the American Journal of Nursing
© Lippincott, Williams and Wilkins. Reprinted with permission.

Knowing and exercising your rights can make your life much easier as you make decisions concerning your treatment and as you work for recovery or relief of symptoms. This list, published in the "American Journal of Nursing," can be used as a guideline for those who are dying and who care for a loved one who is dying. I recommend you read through this page and notice which ones you particularly want to emphasize. Then think of the ways those rights can be accomplished. Share your ideas with others and ask them for help if need be.

— Arlene Harder, MA, MFT, Editor-in-Chief

The American Journal of Nursing now publishes a bimonthly continuing education series on palliative care that is funded in part by a grant from the Robert Wood Johnson Foundation. This series can be accessed by going to the American Journal of Nursing's web site and clicking on Palliative Nursing Series.

The Dying Patient's Bill of Rights

I have the right to be treated as a living human being until I die.

I have the right to maintain a sense of hopefulness however changing its focus may be.

I have the right to be cared for by those who can maintain a sense of hopefulness, however changing this might be.

I have the right to express my feelings and emotions about my approaching death in my own way.

I have the right to participate in decisions concerning my care.

I have the right to expect continuing medical and nursing attention even though "cure" goals must be changed to "comfort" goals.

I have the right not to die alone. I have the right to be free from pain.

I have the right to have my questions answered honestly.

I have the right not to be deceived.

I have the right to have help from and for my family in accepting my death.

I have the right to die in peace and dignity.

I have the right to retain my individuality and not be judged for my decisions which may be contrary to beliefs of others.

I have the right to discuss and enlarge my religious and/or spiritual experiences, whatever these may mean to others.

I have the right to expect that the sanctity of the human body will be respected after death.

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 death.

© Lippincott, Williams and Wilkins. Reprinted with permission.

A NURSE'S PLEA

This was written by a nurse and published in the American Journal of Nursing, February 1970. The request to be attended to is a simple request, one that every patient deserves, whether they are dying or not. But with fewer nurses covering more patients, often there is not time to give the dying patient much more than cursory attention.

I am a student nurse. I am dying. I write this to you who are, and will become, nurses in the hope that by my sharing my feelings with you, you may someday be better able to help those who share my experience.

I'm out of the hospital now — perhaps for a month, for six months, perhaps for a year — but no one likes to talk about such things. In fact, no one likes to talk about much at all. Nursing must be advancing, but I wish it would hurry. We're taught not to be overly cheery now, to omit the "Everything's fine" routine, and we have done pretty well. But now one is left in a lonely silent void. With the protective "fine, fine" gone, the staff is left with only their own vulnerability and fear. The dying patient is not yet seen as a person and thus cannot be communicated with as such. He is a symbol of what every human fears and what we each know, at least academically, that we too must someday face. What did they say in psychiatric nursing about meeting pathology with pathology to the detriment of both patient and nurse? And there was a lot about knowing one's own feelings before you could help another with his. How true.

But for me, fear is today and dying is now. You slip in and out of my room, give me medications and check my blood pressure. Is it because I am a student nurse, myself, or just a human being, that I sense your fright? And your fears enhance mine. Why are you afraid? I am the one who is dying!

I know you feel insecure, don't know what to say, don't know what to do. But please believe me, if you care, you can't go wrong. Just admit that you care. That is really for what we search. We may ask for why's and wherefore's, but we don't really expect answers. Don't run away — wait — all I want to know is that there will be someone to hold my hand when I need it. I am afraid. Death may get to be a routine to you, but it is new to me. You may not see me as unique, but I've never died before. To me, once is pretty unique!

You whisper about my youth, but when one is dying, is he really so young anymore? I have lots I wish we could talk about. It really would not take much more of your time because you are in here quite a bit anyway.

If only we could be honest, both admit of our fears, touch one another. If you really care, would you lose so much of your valuable professionalism if you even cried with me, just person to person? Then, it might not be so hard to die — in a hospital — with friends close by.