By Karen Rancourt, PhD | What to do if you or your spouse has a terminal illness and the two of you disagree on when to have the end-of-life “talk” with the kids |
Dear Dr. Gramma Karen:
My husband was just diagnosed with a serious disease and told he probably won’t live beyond 18 months. Carl, a scientist, has done a lot of research on his disease and given much thought to what he is willing and unwilling to do. He has opted for no treatment. He said he wants to just focus on pain management and on enjoying whatever time he has left. His doctors are supportive.
I agree with him on all his decisions, except one. He does not want to tell anyone about his situation, including our two daughters, both of whom are married and have young children. He said he will tell them when his illness is obvious. Meanwhile, he does not want to burden them because there is nothing they can do about it anyway, except worry and fret over him. He says there will be time for his family to be sad, and that time isn’t now.
I disagree with him. I think he must tell our daughters immediately. I know my girls, and I am sure they will be very upset, even angry, that they were kept in the dark about their dad’s illness. Your thoughts?
You raise a topic many family members would rather not address: dealing with end-of-life (EOL) conversations and decisions. They can be difficult, uncomfortable, and scary, but as you and your husband understand all too well, they are critical, especially when facing serious medical challenges. Although you may be feeling isolated and alone right now because Carl doesn’t want others to know about his situation, EOL experts agree that by having open and honest conversations with one another, you are on the right track.
The area of disagreement for you and Carl — deciding what to tell others and when to do so — is one of many important decisions a couple faces when a spouse is diagnosed with a terminal illness. Fortunately, resources are available to help you make those critical decisions, including at CarePlanners, AARP, and the National Institute on Aging.
An exceptionally informative and comprehensive resource is Compassion & Choices, “the leading nonprofit organization committed to helping everyone have the best death possible.” Compassion & Choices offers free counseling, planning resources, referrals, and guidance.
I called Compassion & Choices to learn how they might be helpful to you and Carl. Their trained counselors, I was told, are there to help “expand perspectives, raise awareness, educate, clarify options, and facilitate discussions to help ensure that one’s final wishes are clear, respected, and bring as much peace of mind as possible.” For example, they can help you with “the all-important set of end-of-life planning documents that include a living will (‘what I want’) and a medical durable power of attorney (‘who will speak for me’).” I was assured their consultants have no fixed opinions or religious or spiritual assertions on the issues that are important to you; they do not try to “move” you to any particular position.
In addition, you may elect to work with one of their consultants to resolve any issues that are confusing or distressing. I asked how they would address your disagreement about telling your grown daughters about Carl’s medical situation. The consultants could talk about this with you, or Carl, or both of you as well as with other family members or friends you might want to include.
A question for Carl might be: “How would you feel if one of your daughters had an advanced or terminal disease and did not tell you about it?” The consultant might also suggest you talk to Carl about how his wall of silence affects you as his primary caretaker—for example, ways in which it is a burden and what you fear it may do to your family’s relationships.
Ultimately, Compassion & Choices is committed to helping you make decisions that give Carl dignity and control over his remaining time.
Karen L. Rancourt, PhD, writes an advice column for parents and grandparents at Mommybites.com and is the author of Ask Dr. Gramma Karen: Helping Young Parents and Grandparents Deal with Thorny Issues.