Dear Barbara, I need some advice. I am doing a patient evaluation and have been told not to use the word “hospice“ with the patient. The primary care person doesn’t want the patient to know the seriousness of their illness.

I hear this way too often. I suppose the primary care person is trying to protect their special person.

I believe everyone has the right to be told once that they can’t be fixed. It is the physician’s job to compassionately and honestly give that information. Then, if it is the person’s choice not to talk about it, so be it. BUT when family members try to protect their person, I see a challenge. 

In an initial evaluation, when asked not to use the word “hospice,” I say this: “I will not bring up the words ‘hospice‘ or ‘dying.’ BUT if the patient asks me, I will not lie. I will answer them honestly while being gentle.”

THEN I begin teaching. I teach the person that made the request that mom lives inside of her body. She knows how serious her condition is. She may be protecting family by not talking about it, but she knows.

A very special opportunity is being lost by not talking. The opportunity to say goodbye, to share the meaning of the relationship, to support each other during this challenging time.  

Everyone is going to be afraid when it comes time to die. By not talking about approaching death, everyone is alone in their fears. By talking, we can support each other and bring comfort to a scary time. By not sharing, by acting like everything is fine, special opportunities are being lost.

What about dementia situations when the memory of any conversation ends? Again a person has the right to be told once. If it is not remembered, why create the anguish again and again? 

A good rule to follow is to never lie. Our credibility, the service we provide, is built on truth, delivered gently and compassionately.

Something More…  about Don’t Let A Special Opportunity Get Lost

There is a lot of information that can support family caregivers in both Knowledge Reduces Fear Volume 1 and Volume 2. 

Originally Published on https://bkbooks.com/blogs/something-to-think-about

Barbara Karnes Registered Nurse

Barbara Karnes, RN Award Winning End of Life Educator, Award Winning Nurse, NHPCO Hospice Innovator Award Winner 2018 & 2015 International Humanitarian Woman of the Year

While at the bedside of hundreds of people during the dying process, Hospice Pioneer Barbara Karnes noticed that each death was following a near identical script. Each person was going through the stages of death in almost the same manner and most families came to her with similar questions. These realizations led Barbara to sit down and write Gone From My Sight, "The Little Blue Book" that changed the hospice industry.