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.