Dear Barbara, Sometimes the patient and family doesn't want to hear the word hospice or end of life care. What words can we use to be sensitive?
I don’t think you do use other words to be more sensitive to end of life issues. This seems to be the problem today with physicians and healthcare workers. Don’t use the “d” word. Address treatments but not “There is nothing more we can do”.
Everybody dies. Our bodies are programed to die. From the moment we are born we begin to die yet no one wants to acknowledge it. Studies show that Americans spend hundreds of thousands of dollars on medical treatment in the last year of their life. For many this results in bankruptcy. Yet in the majority of those cases the result of the medical intervention ended in death-----because disease is one of the ways people die.
SO---I think we need to be honest with our patients and families. When I say “we“ I mean all healthcare professionals, from physicians to everyone else. Not being insensitive but honest. When a person sits across the desk and we are talking about treatment for a life threatening illness too often the physician thinks they are saying one thing but the patient/family is hearing something else. For the patient/family they generally equate treatment with cure. Cure means returning to their healthy life. When the physician is speaking treatment they are probably talking tumor reduction, or remission at best. Who said “What we have here is a failure to communicate?”
Someone has to have the courage to say “We’ve done the best we can. We can’t fix you. Let us help you have some quality time”.
We really aren’t doing people any favors by not being honest with them. We aren't giving their families the opportunity to do and say what needs to be said and done. We are depriving people the opportunity to put their life in order, to say “goodbye and I love you”. We are not only taking their money but their time. So often the last year of a person’s life is spent in hospitals, at doctor’s appointments, in labs getting blood work, in radiology getting treatments, and home in bed too sick to enjoy the time they have.
I know, I work on the down side of the medical establishment. You say I only see the situations where medicine doesn’t work but I say I see the real side of living. We are born, we experience and we die. That is what life is all about. I don’t have the illusion that the body lives forever and I do have the desire for us to experience the positive side of living until we are dead.
Something more about... Is Talking about Dying, Insensitive?
Educating the public about the normal, natural way that people die from disease and old age is tough. I have done Death Cafes using my 25 minute film, NEW RULES for End of Life Care and have had wonderful responses. Churches, community groups and organizations have shown the film to educate their members.
7 comments
Tonya mcready
Thank you so much Barbra for all your education, and sharing your knowledge .I enjoy your articles and always learn something new.
Tonya
Thank you so much Barbra for all your education, and sharing your knowledge .I enjoy your articles and always learn something new.
Tonya
Lizzy Miles
Respect your work completely. You neef to know, however, that showing a movie is inconsistent with Death Cafe guidelines and strictly prohibited. You cannot call that event a Death Cafe
Respect your work completely. You neef to know, however, that showing a movie is inconsistent with Death Cafe guidelines and strictly prohibited. You cannot call that event a Death Cafe
Barbara
Hi Monica, I’m sadden too by the response of the nurses and the doctor. Your example of the insensitivity can be found in way too many healthcare settings. The medical model doesn’t seem to have a place for death in it, hence employees are not trained in end of life skills. Enter Hospice who has the skills ——hospitals and nursing facilities are key areas for teaching, for offering inservices to staff, including physicians, on how to be sensitive, on how to comfort, on how people die. My DVD “This Is How People Die” teaches those areas and more.
Bless you Monica for the work you are doing. Stay strong.
Barbara
Hi Monica, I’m sadden too by the response of the nurses and the doctor. Your example of the insensitivity can be found in way too many healthcare settings. The medical model doesn’t seem to have a place for death in it, hence employees are not trained in end of life skills. Enter Hospice who has the skills ——hospitals and nursing facilities are key areas for teaching, for offering inservices to staff, including physicians, on how to be sensitive, on how to comfort, on how people die. My DVD “This Is How People Die” teaches those areas and more.
Bless you Monica for the work you are doing. Stay strong.
Barbara
Joanne Ciampi
I agree wholeheartedly!! While my sister was undergoing chemo, she and I talked about “what if it doesn’t work this time” and “when do we decide to call hospice”? She then brought the subject of hospice up with her oncologist, and he agreed that when she decided it was time to quit, he would order hospice care. He was very frank with her and she appreciated it.
I agree wholeheartedly!! While my sister was undergoing chemo, she and I talked about “what if it doesn’t work this time” and “when do we decide to call hospice”? She then brought the subject of hospice up with her oncologist, and he agreed that when she decided it was time to quit, he would order hospice care. He was very frank with her and she appreciated it.
Anonymous
I am a hospital chaplain and I was called to the emergency department. A patient was suddenly going down fast. As i prayed with him and his son he took his last breath. Two nurses came in at that moment because they had seen it happening on their screen. Neither said anything to the son. A doctor came in to pronounce and the son said, “can he still hear us?” The doctor left mumbling something incoherent. I turned to the son and said, “your dad took his last breath as we prayed.” “Is that why those two nurses came in?” “Yes. And the doctor just pronounced the time of death.” “ He did?” “Yes. I’m sorry he wasn’t clear. “
I was so mad at the doctor.
I am a hospital chaplain and I was called to the emergency department. A patient was suddenly going down fast. As i prayed with him and his son he took his last breath. Two nurses came in at that moment because they had seen it happening on their screen. Neither said anything to the son. A doctor came in to pronounce and the son said, “can he still hear us?” The doctor left mumbling something incoherent. I turned to the son and said, “your dad took his last breath as we prayed.” “Is that why those two nurses came in?” “Yes. And the doctor just pronounced the time of death.” “ He did?” “Yes. I’m sorry he wasn’t clear. “
I was so mad at the doctor.
Jennifer Forish
I was always taught as a hospice nurse, to use the words “dead”, “dying”, “ death”. Instead of “passing away” or “ transitioning”. Because the families need to have no confusion on what is going on. I have always abided by this and found it promotes understanding and no confusion.
I was always taught as a hospice nurse, to use the words “dead”, “dying”, “ death”. Instead of “passing away” or “ transitioning”. Because the families need to have no confusion on what is going on. I have always abided by this and found it promotes understanding and no confusion.
Sandra McCants
Thank you for always reminding me how important our work is.
Thank you for always reminding me how important our work is.