The Right to Know of a Terminal Condition

This morning I went by a patient’s home for an initial Spiritual Assessment. I called the patient ahead of time, and she was fine with my coming over. However, when I arrived, I was met at the entry hall by the patient’s daughter and told that I needed to speak to her aunt first. After a short conversation about the role of Spiritual Care Counselor, it became apparent that the patient’s family has not told her that she is dying. It isn’t the first time I have run into this situation, and it certainly won’t be the last, but it disturbs me, every time I run across it.

There are reasons why people withhold information: Fear, Denial, fear, Cultural, fear, etc. I have seen the same scenario, where it is just a matter of time when they do feel the need to share the truth with the patient. With support, education, and encouragement, they do bring the truth into the open, and in those times they have often discovered that the reality was not as scary as their imaginations were. But the end result of continuing to keep it a secret could be a damaged relationship with the one who they were trying to protect, but who now feels betrayed since everyone in the family knew except for them. Can you imagine learning that everyone else not only knew but were making important decisions about your care without consulting you?
But actually, in most cases, the patient does know, if for no other reason than their family members are behaving differently, and are more secretive. But, they know that they feel different, weaker, etc. It becomes the proverbial gray elephant in the room that no one wants to talk about.

But there is a statement entitled : “The Dying Person’s Bill of Rights.” It was developed at a workshop on “The Terminally Ill Patient and the Helping Person,” sponsored by the Southwestern Michigan Insurance Education Council and conducted by Amelia J. Barbus.

· “ I have the right to be treated as a living human being until I die.
· I have a 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 my death.”

So, the sad part to me, when I encounter a family who wants to maintain secrets, it is not only because of the lack of respect and dignity for the dying person’s ability to make decisions regarding their own dying, it is also because, the process of dying is as much a spiritual process as it is a physical one. It can be a truly beautiful one, if the dying person and their family members allow the hospice team to support them, educate them, and provide resources for them to open up to the spiritual journey. Those who have the courage to move beyond the fear, and embrace the journey before them, most often relate that it is an experience that they wouldn’t trade for anything.