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?
Expert Answer by Joyce Simard
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.
Answer
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.
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