Source: Warren Berger
I’m fascinated by the power of questions to help people grapple with tough issues. And what could be tougher than contemplating the end of your life (even if you don’t know when that might be)? Can questions help us deal with that off-putting topic?
It may be harder than it sounds. Societal norms discourage death talk, and people hold deep prejudices against speaking openly about the end of life. Even those able to accept the idea of death are often more preoccupied with putting their financial affairs in order and making arrangements for their remains. People rarely make the time to consider how to navigate skillfully through the process of decline, and this omission has unfortunate consequences.
Navigating Life's Crises
The following questions are adapted from the new book Finish Strong: Putting Your Priorities First at Life’s End by Barbara Coombs Lee, a former nurse and physician assistant turned national end-of-life options advocate in her role as president of Compassion & Choices.
In Finish Strong , Coombs Lee suggests lots of topics to discuss with your physicians and family members, but here are 5 important questions you should ask yourself before you even start those conversations.
1. What if I spent as much time discussing my latter days' quality of life as I do my estate planning?
It’s a sad fact that people spend more time on what’s going to happen to their money after they’re dead and gone than planning on how to ensure their living selves will have the best possible end of life experience—one that matches the rest of the life they’ve enjoyed.
Salma Hayek (mom to Valentina): “When Valentina was not even 1 month old, my aunt [gave me the best advice]: ‘Put her to sleep yourself every night. Sing to her and cradle her in your arms and sit by her side - every night. Because one day you won’t be able to, and it’s going to happen really fast.”
Once you decide it is indeed worth spending at least as much time thinking about your future self as you put into deciding your financial legacy, you may next wonder “How might I begin this kind of end-of-life planning?” which leads to the next question…
2. What have been the main values, beliefs, priorities, and goals of my overall life and how might I make sure these are carried through my end-of-life experience?
Getting clear on your lifelong values and priorities now will be the driver of many of the test and treatment decisions you’ll face in your waning years. Are you somebody who believes that life is precious and should be extended no matter how extreme the technological interventions that are required? Or are you someone who prizes the quality of life at the end and wants to die at home, not the hospital, even if that means your life may end sooner?
The Power of Purpose and Meaning in Life
Ground your quality-of-life vs. quantity-of-life balance and your priorities in your religious and/or spiritual beliefs. How are they consistent with the beliefs and practices that have given your life meaning? Clarifying this gives your directives to your doctors, family, and proxies weight and authenticity.
Coombs Lees writes, “It’s essential to remember that this is your life, your body, and your decision. It’s your choice whether and when to halt efforts to prolong life, especially if those efforts come at the expense of your values and priorities. Remember that it is always a patient’s prerogative to say, ‘No,’ to say, ‘Enough.’”
Pay attention at age 14. That's when most kids start to resist peer influence and flex the think-for-myself muscle, rather than simply following the leader, according to a study published in Developmental Psychology. Want to help strengthen that muscle at any age? Put screens aside and circle the wagons every night. Ask, "What's new with your friends?" This will (here's hoping, if he talks) give you a chance to decode what's happening behind the scenes and offer support.
This Values Worksheet suggests questions to consider as you make decisions and prepare documents concerning your healthcare preferences.
3. Now that I’m clear on what my priorities and values are, how might I make sure that my doctors and family will honor them?
As difficult as the topic of dying may be, being willing to talk about it now is a key factor in ensuring a future peaceful and gratifying end of life experience for yourself. For instance, lack of dialogue with people close to you is one of the main reasons advance directives fall apart, writes Coombs Lee. Instructions on paper are mostly ineffective unless the people authorized to give them effect know in advance the values and priorities behind them. The unconscious person and health care proxy often have not discussed the goals, preferences, and values outlined in the advance directive and other documents. In fact, fewer than three in ten people have actually talked with their loved ones about end-of-life care, according to a survey conducted by The Conversation Project.
Musings: How Much Time Do I Have Left?
Coombs Lee’s advice: Start talking about your wishes early and often, so that there’s no mistaking what you do and do not want to happen if a calamity occurs and you are unlikely to recover. You may be unable to articulate your wishes at that point. Your family and healthcare proxy will thank you for the advance conversations.
4. How might I avoid getting put on the medical overtreatment conveyor belt?
There is a bias towards overtreatment in modern medicine, and some reasons include financial incentives, a reluctance to deliver bad news, your expectations (and your family’s), available new technology, defensive medicine, and the negative connotation of “giving up.”
Encourage your child to be careful when disclosing personal information. A simple rule for younger children should be that the child should not give out their name, phone number or photo without your approval. Older children using social networking sites like Facebook should be encouraged to be selective about what personal information and photos they post to online spaces. Regardless of privacy settings, once material is online you can no longer control who sees it or how it is used.
If heroics and intrusive technological interventions at the end of life conflict with your wishes and values, it’ll be up to you to combat the predisposition of modern medicine to put you on the overtreatment conveyor belt, which can often lead to a less-than-peaceful death in the hospital. Guess what your best weapon is? Questions!
Here are a few of the questions Coombs Lee suggests in Finish Strong that you should be prepared to ask if you are facing a test or treatment and have to make decisions:
Do you have good news or bad news for me? Acknowledge a doctor’s discomfort by saying something like, “It must be hard for you to tell me this,” but then asking plainly for candor from her or him. A dread of delivering bad news can lead doctors to offer treatments that do little to extend your life and may end up hurting the quality of it.
What’s the worst that can happen with this test/treatment? Without it?
How long has this technology been available at the facility and what is the local experience with it? Ask this when a test or treatment is offered to you as “the latest thing.”
Is there a low-technology means to do the same thing? Why is the new machine or technique better?
Do we have time to delay this decision?
Will this test/treatment compromise the quality of the time I have left?
Is there a comfort care option?
What course of action would you choose for yourself in my place?
Is there anything else I should know before I consent or decline?
5. Who do I believe is in charge of the doctor-patient relationship?
A wishful-thinking answer may be that, of course, the doctor should be in charge because don’t “doctors know best?” But in reality who knows better than you what’s right for you?
A new paradigm of patient-directed care that emphasizes shared decision-making calls for physicians to be more collaborative than directive, more consultative than authoritative. If you are ever facing a serious or advancing illness, says Coombs Lee, make sure you have a true partner in your doctor by asking yourself the following questions:
Fess up when you blow it. This is the best way to show your child how and when she should apologize.
- Does my doctor have humanity?
- Does my doctor show deference?
- Is my doctor candid?
Your end-of-life comfort and peace may depend on the answers to those questions.