My husband Carl was just diagnosed with a serious disease and has been told he probably will not live beyond 18 months or so. He has opted for no treatment, no experimental drugs. He said he wants to enjoy whatever time he has left and will just focus on pain management. His doctors are supportive.
Carl, a scientist, has done a lot of research on his disease and has given much thought to what he is willing and unwilling to do. I agree with him on all his decisions, except one. He does not want to tell anyone about his situation, and that includes 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 with his news since there isn’t a thing 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 does not want others to know about his situation, all the EOL experts agree that because the two of you are having open and honest conversations, you are on the right track. That is, communication is a linchpin factor.
An area of disagreement for you and Carl is deciding what to tell others and when to do so; this is one of many essential decisions that you and Carl face. As detailed by Caregivers, co-founded by Dr. Nancy Synderman, Chief Medical Editor for NBC, in addition to end-of-life considerations, other areas of you may want to consider include, having the conversation; assembling your team; health and medical history; insurance; legal; financial; home and long-term care. Caregivers has information and resources for each of those areas, as well as care planners to discuss individual needs and options.
In addition, there are other resources that may prove helpful, both for Carl as someone with serious medical challenges, and for you as a primary caretaker. For example, if you want data and information – an option that may appeal particularly to the scientist in Carl – I cite these sources:
(1) AARP’s site comprises over 60 articles, including: interviews with EOL experts; comments from others dealing with your similar decisions; tips on how to have difficult conversations; guidelines for staying in control of your own situation.
(2) National Institute on Aging (US Department of Health and Human Services) also provides useful information on end-of-life decisions.
Compassion & Choices is an organization I found to be exceptionally informative and comprehensive: “ . . . the leading nonprofit organization committed to helping everyone have the best death possible. We offer free counseling, planning resources, referrals and guidance, and across the nation we work to protect and expand options at the end of life. For over thirty years we have reduced people’s suffering and given them some control in their final days – even when injury or illness takes their voice. We are experts in what it takes to die well.”
After familiarizing myself with their Web site, I called them to explain your specific situation and to learn how they might be a helpful resource to you and Carl. It was explained to me that their trained consultants can help you with advance planning, “ . . . 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’) that outline your end-of-life preferences. Each state has its own forms and guidelines, which are available . . . [on their Web site].”
In addition, you may elect to work with one of their consultants to help you work through 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 with whom I was speaking explained that they could talk about this with you, Carl, or both of you together, as well as with other family members or friends you might like 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 talk with you about it?” The consultant would perhaps also ask you to talk about how Carl’s wall of silence affects you as his primary caretaker – e.g., ways in which it is a burden, what you fear it may do to your family’s relationships.
The point is that Compassion and Choices ensures that you and Carl have access to trained EOL professionals who are committed to helping you make decisions that give Carl dignity and control for his remaining time. As explained to me, “Our professional consultants will listen to your unique situation to answer questions about advanced and terminal illness. Some callers want to improve the quality of life they have remaining. Some are terminally ill and wish to achieve a peaceful death. And some simply want to plan ahead. We are ready to help individuals and families in all these situations.”
I was assured that 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. Their job is to 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.
It is my sincere hope that these resources are helpful and comforting to you, Carl, and any others you may decide to be part of your support network.
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