Should we tell Dad he's sick?
Should a person with severe cognitive impairment be told about a cancer diagnosis? My father is in a nursing home after suffering a serious traumatic brain injury. He was recently diagnosed with a lung tumor which may have already metastasized. Due to his frail health, surgery or chemo are not feasible options. We have thus enrolled him in hospice. How much should we tell him about his current medical situation and end-of-life issues he is facing?
The answer to your question is how much do you think he understands. For Alzheimer's patients with severe cognitive impairment in a hospice program we would just reassure him that he is loved and cared for. We would also be sure that he is not in pain. It is a bit more challenging to do a pain assessment on someone who has difficulty communicating, however most hospice programs are quite skilled at this; some nursing facilities are not. The PAINAD scale is available on the Internet if you are interested.
Continue to provide pleasurable sensory activities such as massaging his hands, arms and legs, and offering sweets if he has no problems swallowing.
The discomfort of whether to tell a terminally ill loved one that they are dying, says volumes about us as a society, and the survivors' discomfort with death.
I believe that every person deserves the respect of being informed of a terminal illness. This includes people with Alzheimer's and Dementia. I believe that to withhold such personal and critical information is to show disrespect verging on cruelty. When my elderly father was dying of Leukemia, up to the day he died, the family smiled and pretended he was getting better. Forty years later, I still regret this because now I realize my Dad had to suffer alone. On some level, he knew that his body was failing him, but he had no one to confide in about his concerns. As a Christian, I also believe the most effected person has a right to know of a terminal illness, to give him the chance to prepare spiritually.
Obviously, the amount of detail given, and how the person is told, will vary depending upon the patient's ability to comprehend. After letting the person know, I would not continue to dwell on it. I would let him know that you will continue to be there for him, that he is loved, and that he will be made as comfortable as possible.
I have seen this both ways working in long term care. Alzhiemer's patients, in advanced stages 3-4, find CANCER as well as your reaction a very scarry thing. It is not a normal word for them like lunch, bathroom, drink or shoes. One gentleman with advanced AD was told by his son he had terminal liver cancer and just a few weeks (12-16) to live. The son cried and the behavior associated with the visit frightened the Dad. When the son left, we had a terrible time getting him out of his room to eat or participate in activities. Once we found him trying to hide in his closet. He told us CANCER was coming to get him and he thought he was going to get "beat up". In most cases where AD or dementia are involved, the patients I have personally worked with, react to your reactions more so than the actual news.
I don't see the point in keeping a person with severe cognitive incapability alive. What's the point? I'm 75 years old and keep looking for a strategy to be put into a hospice and have a comfortable death if I don't know what is going on. There is no quality of life, even if you are in good physical health, but are oblivious to the world. Again, what's the point?
Amen Yanotk. I couldn't agee more.
TeaMcAlpin; Think "child". The amount of information one gives an Alzheimer's patient should be appropriate to his ability to comprehend. Just like telling your child about sex. If I gave my 5 yr old the same details about sex and reproduction that I gave my 12 yr old, I would scare her to death. As for Yanotk; It's my experience that with Alzheimer's, both the body AND the mind deteriorate. Do you have Alzheimer's? You don't make it clear. Why in the world are you planning your "exit strategy" when you're only 75? Judging from your comment, your mind still appears to be lucid. And you mention a healthy body. Why in the world are you planning how to check out, when you should still be enjoying life?
I posted the original question asking how much should we tell my dad about his lung cancer. Since that posting, my dad has passed away. In the interim, my sister and I were able to have a couple of meaningful conversations with him about his situation. I don't know how much of this information he was able to retain on a day-to-day basis. However, in the end, he clearly processed his life and was able to say goodbye to all of us. I hope we struck an appropriate balance between giving him the necessary knowledge to be actively involved in his own life and death without re-traumatizing him each time he had to learn anew that his situation was acutely terminal.
Yanotk - we struggled with our decision to keep our dad fed, medicated, etc the entire time since he sustained his head injury. These activities essentially kept him alive. Before his head injury, I know that he would not have wanted to live the type of life he had these past two years. However, in his post-injury state, he clearly was not ready to give up -- he stated more than once he was not ready to die. His change in cognition changed his wishes. We did put an emphasis on his comfort, giving him medications that made him feel better (e.g., anti-histamines) or dealt with pain, rather than trying to "cure" him. I do know he fully processed his life and his death in the last couple of days. The love and acceptance he displayed to us at the end was truly beautiful. Would I have signed on for two years of suffering for the beauty at the end? No. However, I am extremely grateful to have received my dad's parting gift of love. This experience has certainly taught me how gray the issues are surrounding life/death/cognition/medical intervention/etc.
Wow. We are just finding out about Dad's lung cancer (76 w/ severe dem). I am so concerned about Mom (74 mid/end Alz) being able to comprehend all this. It is tragic. I am just starting down the path you already navigated and I am worried about doing the right thing(s). Thanks so much for your post!