What if we spent as much time discussing our latter days' quality of life as we do our estate planning?

If I could turn back time, knowing what I know now, I would press my parents to provide specific directions for their care in the case of a catastrophe or serious illness. If we’d had an explicit plan for a sudden crisis like a heart attack or a stroke, I might have asked the doctors for a more candid assessment of my father’s prognosis when he suffered a major heart attack during routine surgery to remove a colon polyp. If I’d talked with my mother about comfort care and how people under sedation often die from pneumonia and dehydration, I might have been more comfortable myself when her own departure unfolded along this course.

Certainly, these experiences inform my own behavior now. At age 71, I’ve made sure my family understands my views about futile treatments if medical catastrophe has felled me and the chance of recovery is slim.

The beneficial impact of end-of-life discussions is well documented. One large and multi-institutional study published in The Archives of Internal Medicine in March 2009 evaluated the quality of life of patients with advanced cancer during the final days of their lives. Those who had discussed end-of-life values and preferences with their doctors suffered significantly less during their last week of life. A considerable reduction in intensive care unit (ICU) admissions and high-tech interventions accounted for this outcome.

An editorial published in the Journal of the American Medical Association, following a previous study in October 2008, concluded, “End-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient quality of life and worse bereavement adjustment.”

The best preparation is people preparation, not paper preparation

Just as with estate planning, it’s clear that the more you think about and talk about what your life values and priorities are in your 50s, 60s, and 70s, the more you can ensure a better, more customized outcome further down the road. We don’t start planning for retirement the year we stop working. We don’t start saving for college when we get our acceptance letter. We recognize these events will be upon us and we begin preparing for them decades before. We owe it to ourselves to bring the same forethought to the final phase of life.

But we face two problems: In our society, talking about one’s eventual demise proves to be a much more fraught topic than where your money goes after you die. And there aren’t thousands of financial advisors standing by to help you navigate through this process.

That said, it’s never too early to discuss values and priorities related to advanced illness and the end of life. This is true even for people who have no illness at all. The earlier your loved ones and your doctor hear what is important to you, and the more they hear you repeat it, the more they will be inclined to support you in your decisions and carry them out if you can no longer speak for yourself.

Begin this all-important conversation with your own physician. Keep in mind, though, that your doctor will probably wait for you to broach the subject, so don’t wait for an invitation.

If you’re wondering how to approach the topic without seeming morbid, here are a few openers you might consider:

• “A friend of mine recently had a terrible death, hooked up to tubes and machines. I think I'd just want to be home with my family. What do you think about a decision like that?”
• “I love so much about my life—being active, spending quality time with my family. If none of that were possible anymore, I'd like to go out peacefully, without a lot of heroics. Does that fit with your medical ethics?”

You could also share your wishes in a letter to your doctor, if that makes you more comfortable.

Either way, you’ll be able to find out sooner than later if your doctor will be a compatible partner to you in supporting your wishes. (You should anticipate repeating this with future doctors, too. Don’t worry—it gets easier.)

As important as it is to speak frankly with your physician, it is equally important to do so with your friends and family. Since there’s often little chance the topic will arise naturally, you need to plan for it. Let your loved ones know you’d like to discuss something important with them, and choose a time and place with care. One potential time to start the conversation is when the family is gathered at Thanksgiving, a holiday that’s relatively relaxed without the emotional stakes of Christmas or New Year’s.

If you’re at a loss for how to begin, here’s a possible opener:

Mom (or Dad, or Kids), every day I’m so thankful we’re all alive and well. And more than anything, I hope we all stay alive and well for a long, long time. But I recently I’ve been reading about the importance of talking about the future at a time like this, not despite but because of the fact that everything is good right now.

Whatever the future might hold, I want to make sure that your (or my) values and wishes are respected and honored. I want to discuss how to protect the rest of our precious time together…

Some people might feel tempted to skip the potentially uncomfortable discussions with their family and doctors and just rely on their written advance directive forms to convey their end-of-life care wishes. Those forms cover all the issues, don’t they? Hardly. I recommend completing advance directive forms but I do not recommend relying on them alone to avert confusion, settle debates among family members, prevent unnecessary suffering, or avoid a prolonged dying process. Decisions are made by people, not pieces of paper, and thus the best preparation is people preparation, not paper preparation.

Other things to keep in mind when considering your expectations and wishes:

• Start by creating a clear statement about the balance between the quality of life and the absolute quantity of life. This will be a touchstone for every decision about tests or treatments, hospitalizations or ICU admissions, if such decisions become necessary.
• Ground your quality/quantity 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 ideas weight and authenticity.
• Advance directives are good, but they come into effect only when people lose the ability to make decisions for themselves. Also, they typically cover only dire circumstances, such as permanent unconsciousness or terminal illness, and very specific life-sustaining treatments like ventilators and feeding tubes. Your personal wishes and priorities may be broader than that, and need to be discussed. If you’ve named a health care proxy, that person will benefit greatly from more information than merely an advance directive.
• Create a document, audio recording or video to communicate your philosophy and serve as evidence that your ideas are firm and long-standing. A short video showing you of sound mind, expressing your well-thought-out priorities and wishes, will have an immediacy and authentic tone far stronger than any signed and witnessed form. This documentation will make everyone more comfortable if later on you decide to forego a treatment or stop one that is sustaining your life, like kidney dialysis.
• Give a copy of these documents or recordings to several people whom you love and trust, and who are likely to be present if a medical catastrophe occurs.

Knowing the anguish of uncertainty firsthand from my parents’ deaths, I’m committed to preventing it for my own loved ones. And knowing the severe limitations of advance directives, I put my faith in conversations—in having them early and often. My goal is to give those around me the confidence to make hard decisions if they must.

Sometimes my two children, now grown and with families of their own, avert their eyes during these conversations. But my husband and my friends never do. They know what I need most, and they graciously give it to me: the promise to help me finish strong and go gently; the gift of their understanding and loyalty to me, my values and beliefs.

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Barbara Coombs Lee, a former ICU nurse and physician assistant, lawyer, and policymaker, is the author of the new book Finish Strong: Putting Your Priorities First at Life’s End, which describes concrete action in the here and now to help live our best lives to the end. She is president of Compassion & Choices, the nation’s oldest and largest organization working to empower everyone to chart their end-of-life journey.