There has been many a time when I did a hospice assessment and a family member has said to me “Don’t tell Grandma she can’t be fixed. We don’t want her to give up hope.” That tells me right there I have a lot of educating to do--ASAP.
First, Grandma knows. We live inside of our bodies. We know. We may not share that information with others - either because others insist on playing the game of “you are going to get better” or because we are trying to protect those we love from having to deal with the sorrow of our dying.
Actually, the physician is required to tell us, the patient, before our family is involved and given the knowledge of our condition. If hospice becomes involved it is the patient who signs the paper saying they have six months or less to live. We know.
My response before the educating begins is that if it is the family’s wish I will not bring up the subject of approaching death, but I will not lie or not answer any questions the patient asks me. If that is not okay then Hospice services are not appropriate. How can you give beneficial end of life care if you can’t talk about the end of life. Now we are not going to come in and say, “Let’s talk about your dying” (which some people imagine hospice is about) but professionally we will support, guide, and instruct the patient and family during this final challenge.
In the months before death, if treatment is not an option, guidance in living life to the fullest within the confines that a person’s body and disease will allow is our goal. I try to help people see they have been given a gift, a gift of time. The opportunity to do and say what they want done and said. By not “telling Grandma” we have denied her this gift.
Remember earlier I said “we live inside of our bodies” and that Grandma knows she is dying. With that knowledge comes fear. Fear of the unknown, fear of loss of control, fear of pain. By not talking openly about her declining condition we have isolated her with the fears and concerns she is having. By talking and sharing, the fears will still be there but she won’t be alone.
“Don’t give up hope”. What does that mean? What are we “hoping” for? Hope in a miracle? We can still hope for a miracle while we know that the doctor’s are having a difficult time fixing us. Give up hope that we’ll go on living? The will to live is almost inborn. Knowing the challenges of our illness does not erase that internal drive to stay alive.
Sometimes I think we just say words we’ve heard and don’t really think of the implications of what we are saying. A family under the stress of having a loved one approach death can be a time when what is put into words is not what a person really means. How about--”I don’t want Grandma to give up hope” means “I am so scared and concerned that I want to protect this dear person that I love”. Our job as health care professionals is to guide the family to a place of understanding the gift of time that has been given.
Something more about Shhhh.....Don't tell Grandma!
"Dying is not a medical event. Dying is a social, communal event. And when we're at the bedside of someone who is dying, it is all about the community, about the togetherness. Not about the medical stuff..." This is one of the main points in my DVD kit: NEW RULES for End of Life Care. I speak to not only the patient, but to the caregivers, families and friends who are involved in the dying process; to shine a light of clarity in this challenging time. Do you, or someone you know need to watch "NEW RULES..."?