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Shhhh….don’t tell mom she’s on hospice

By Patty Ayers

It happened again just last week: when the nurse and I arrived at the patient’s house for our first visit we were greeted in the driveway by her very concerned family members.  Their request seemed simple, “please turn your badges around and whatever you do, don’t talk about hospice or death and dying to Mom, because she really doesn’t know she’s on hospice.”

It’s a complicated issue, and one that not only families but medical professionals, too, struggle with: deciding whether telling the truth about hospice is appropriate.  A recent New York Times article in which a physician told of her struggle about breaking uncomfortable news to patients and families engendered multiple, thoughtful comments.

Although you may believe that by withholding your decision to not tell Mom that you have called in hospice services to assist you with her care is a good decision, sometimes it may not be the best course of action.

There is a large body of research that suggests a person wants to know what is happening to their own body and they may already know that they have a terminal illness.  One reason why some families choose not to tell their loved one they are on hospice is because they think Mom or Dad will lose hope or give up.  But if Mom already suspects that her illness is terminal, she may actually want to talk to you about what is happening to her body, and what to expect in the future. Furthermore, by not telling her that she is very sick, it may take away the time and opportunity she needs to say the things she wants and needs to say to you or other family members or friends. Ironically, often when the family has asked us not to discuss hospice with Mom, Mom herself will tell us (privately) she knows she is dying but asks us not mention it to the rest of the family for fear it will upset them.

Sometimes people may not want to know they have a terminal illness and that is okay, too.  If a person has dementia or is not mentally competent, sometimes it may be better to speak with a professional about whether telling them would be the best thing for them. It’s important to consider everyone’s feelings, but also to know that hospice can be a very healing and fulfilling experience that is most successful when all involved participate.

It’s difficult to face our own feelings about a parent dying as well as facing our own mortality.  Perhaps having people come into our home to discuss death makes it all too real.  But once the “elephant in the room” has been acknowledged, you will see that the tension in the air will dissipate and there will be time to talk to them about their wishes and to say the things you need to say.

6 Comments Post a comment
  1. Only in talking about it do we get a real chance to say goodbye. I was very upset with mom’s physicians because they would not say she was terminal and dad never got a chance to say goodbye! (She died in ICU just a few weeks after breaking her hip.)

    April 12, 2012
    • Patty Ayers #

      Thank you so much for sharing your story. I’m sorry that your dad was never given the opportunity to say goodbye to your mom. You are so right, we need to be able to speak open and honestly to dying people about their condition, starting with the physician.

      April 13, 2012
  2. lynn #

    Patty, Thank you for this article. Starting these discussions are so valuable for familes with questions about hospice and how we can help care and support them and their loved ones….

    April 15, 2012
  3. mikebelsito #

    Thanks very much for writing this — and it certainly brings some food for thought (actually, it should be much more than that) for end-of-life caregivers. Every situation is different, but I’ve rarely seen a situation where speaking the truth leads to bad things.

    Again, thanks for this perspective.

    April 22, 2012
    • Terre Mirsch #

      Hello Mike,

      Thank you for sharing your thoughts. As you and Patty discussed, speaking the truth is important and enables loved ones to have the much needed opportunity for closure. It is also important to understand the importance of communicating difficult information with sensitivity and compassion. Beginning the conversation by seeking to understand what the person already knows about their illness is an good way to start the conversation.

      Thank you for following Caring with Confidence.


      April 24, 2012

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