I Hear You, But I Don't Understand

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.

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Sandra Stedinger

Barbara — Thanks for creating all these wonderful educational materials to help families through this most difficult transition period. We lost my dear Mother a year ago, and I gave your blue booklet to those friends and family members helping with her care. Although having been a Dermatologist for 25 years, I had never had to deal with this degree of care right up to the end. My brother wanted to hire a personal nurse to hand feed her more calories, when she was already on the downward path. Reading your material explained simply why this was not a good idea. I appreciate all the support your books gave us during this time. I also tell friends, to call Hospice before you think you need it. Kaiser medical plan wanted to drag their feet until her albumen fell to a certain level. We finally got her signed up a few days before she passed, so we did not get full benefit of the services. I suspect their plan was based on who gets to bill for services. Also they were short staffed, they said.


Barbara, I have been a hospice nurse for many years. One of the first things I teach a new hospice nurse is that that 90% of problems can be solved with taking the time to provide good education and good communication with the patient and family. Thank the Good Lord for special people like you who advocate for the dying. I desperately wish there was something I could do to educate and prepare the general public for end-of-life issues before patients and families are in a crisis situation. There are way too many hospices out there which consider hospice a business and not a service who pay more attention to the bottom line instead of providing quality services including education. Thank you for all the educational material you have authored through the years. I use quotes from your books and videos almost daily to help families understand what happens during the end-of-life process.


Hi Karen, thank you so much for sharing your experience of the lack of understanding that occurred between your family and the medical professionals. Unfortunately it is all to common an experience. It is like there is a language barrier and we need a translator. I’ve said for a long time that we need an advocate (another pair of ears) when we go to the doctor. I’m going to add that the advocate needs to know how to translate medicaleeze.
Blessings! Barbara

Karen Tullis

Thank you for your continued insight. I have several of your books and have shared them with numerous friends. We are all grateful for the clarity they’ve provided.

My own insight now: I Hear You But I Don’t Understand would be an excellent topic – with that exact title – to add to your series of books. It captures to a T the experience my sister and I went thru recently as my dad went very quickly from rehabilitatative care to (quite surprisingly for us) end-of-life care. We had a full complement of doctors, nurses and other caregivers giving us a lot of information – which we could “hear” but didn’t know how to interpret because we had no context for understanding what they were alluding to but not actually telling us: that my dad was, in fact, rapidly reaching the end of his life. If we had known how to listen to what we were “hearing”, it would have made things so much easier so much sooner. We spent way too much time trying to figure out the right questions to ask, and of whom, as we tried to understand what was going on so we could respond and plan accordingly, and help dad understand too.

angie duet

Barbara, thank you and your team for your continuing effort to educate the public on hospice. The tools you publish are vital to our team and we appreciate all you do. Sincerely. Angie

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