Dear Barbara, Can a person whom on hospice and no bowel sound but is talking on phone but can eat food. He can chew it but no swallow it cause they told him not to. He can’t poop. They say it is nothing they can do about that. Can we give him a suppository?

Regarding your question about not pooping and being alert enough to talk on the phone, as well as being allowed to chew but not swallow, I don’t have enough medical information to make any suggestions. It does sound unusual which leads me to think there is a medical reason for the advice you are receiving. Talk with your physician and hospice nurse, ask your questions and don’t stop until you understand the reason for the advice you are being given. This is my answer to the concerned person who wrote the above question. It isn’t the question so much that disturbed me but the sense of lack that I read between the lines: lack of knowledge of the disease, lack of care being given, and lack of support.

People facing the approaching death of someone they care about or even don’t care about are generally not just experiencing the anxiety of losing someone. They are dealing with the lack of knowledge about end of life and how it progresses. Americans tend to avoid addressing end of life preparedness--- "Other people die, not me or anyone close to me”. Dying, while it is a natural part of living, becomes part of a life experience people are totally unprepared for. When faced with approaching death most people bring fear and lack of knowledge.

In their fear they tend to look to medical professionals for guidance. As Medical professionals we tend to think our patient’s and their families understand our goals and the directions and information we are giving them. In reality most do not understand much of what is said. Yet in their fear and anxiety, they are silent. They do as they are directed and don’t ask questions. Sometimes when questions are asked the answers are given in medical terms which might as well be a foreign language.

Case in point, I remember being with my mother in my hospice Medical Director’s office. He was explaining to my mother his medical findings as they related to her illness. I, being a hospice Director and in the medical field, didn’t understand what he was talking about. My mother sat on the end of the examining table nodding her head up and down indicating that she understood. She didn’t.

It is our responsibility, as part of the care for our patients and their families, to be aware of just what is understood of our explanations, and of our directions. This applies to hospice services as well as physicians, social workers, case managers, all of us in the medical arena. Why did the woman who wrote the above question not ask her hospice nurse what she asked me? Her reaching out to me tells me she was not being supported by her hospice. Was there a language or cultural difference that lead to her not understanding the care her person was receiving? It is our job to address both of those challenges. It is our job to know, when our visit comes to an end, there are no misunderstandings, that our directions are clear and understood, and that the person we are teaching or talking with knows they can call us anytime to ask further questions.

Hospice can’t take the challenging experience of dealing with end of life away, but we can educate and support. We guide the significant others through the dying process with the objective of creating for them a sacred experience which will then be a sacred memory. We are failing in our job when we leave people questioning as the one above.

Something more about... I Hear You, But I Can't Understand

In my film, THIS IS HOW PEOPLE DIE, I talk about how to relay information to patients who are approaching death as well as their families, loved ones. Chaplains, social workers, volunteers, nurses and doctors all need to to know that speaking with people in fear and distress as their loved one is dying is different than speaking to those whose loved one will recover from illness.