Q My dear cousin has confided in me that she has terminal cancer, but she hasn't told her family (three children, their spouses and grandchildren). She says she doesn't want "suggestions" from the family. I feel she's wrong to keep her family out of this.
-- N, via email
A The fundamental moral belief about illness is that such knowledge conveyed by a doctor belongs to the patient and to no one else. A patient's right to privacy is close to absolute, and if your cousin wants to keep the facts about her diagnosis to herself, you should respect her wishes.
By the way, how did you come to know of her condition? If she wanted to keep it secret from her family, and you're part of the family, this makes no sense to me. Perhaps she told you in the hope that you would tell others and spare her the pain of telling them herself. Continue your conversations with her, and try to discern her real desires.
I also wonder what "suggestions" she didn't want to hear from her family, though I think this is clearer. I'd guess that she's decided to forgo aggressive treatment of her cancer. She may not want to have to argue with her loved ones about undergoing pointless and painful procedures with no therapeutic value.
Quite often, family members, out of a combination of love and guilt, feel the need to push terminally ill parents and grandparents into procedures that have no medical purpose. As long as therapy is possible, patients ought to take advantage of any clinically proven therapy. However, when therapy is no longer possible, it is the patient's right -- and it's also the right thing to do -- to let the end come when it comes. Medicine is
powerful, but it's not all powerful.
The more difficult question about truth-telling occurs when it is the family, but not the patient, who knows the di- agnosis. I've often helped families wrestle with the question of whether to tell Grandma she's dying. They sometimes say she is frail or vain, and they fear the shock of being told such terrible news would actually cause premature death by panic and heart attack.
This paternalistic attitude, however well-meant, is not morally justifiable or spiritually sound. A person's final days might be spent quite differently if he or she actually knew that they were the final days. To be deprived of this knowledge is to be deprived of the ability to say goodbye to life and to those we love. On the other hand, there are many ways to tell a person the truth without beating him or her over the head with a death sentence. The person can be told about the severity of an illness
without always naming it.
The most important thing is to give the patient all the information he or she needs to assess the situation realistically. There also are ways to build up hope even in a
person's last days. Palliation is the
science of pain relief, and relief from pain can bring a large measure of hope, even if the underlying pathology is unchanged.
The most important spiritual element in truth-telling at the end of life is not to focus on death, but to take joy in the truth of a life well lived. Share stories. Remind the dying person of how much your ability to love others came from your experience in loving him or her. A dying person needs to feel the weight of love as it balances the weight of impending death.
My experience with dying people is that those who liked to control things in life have a more difficult time letting go, while those who were more comfortable falling backward into the pool have an easier time accepting death as just one more thing that can't be defeated or controlled but must be accepted with a calm and hopeful attitude.
We die in just a more intense
version of ourselves when we were healthy. The cynics become dying furies, and the kindly become dying saints.
My most uplifting wisdom about death from the Psalms comes not from Psalm 23, with its green pastures and still waters, but from Psalm 131:1-2: "Lord, my heart is not haughty, nor mine eyes lofty. Neither do I exercise myself in great matters, or in things too high for me. Surely I have behaved and quieted myself, as a child that is weaned of his mother: my soul is even as a weaned child." Death is a weaning from life . . . unto life.