End-of-Life Choice, Palliative Care and Counseling

The Conversationby Barbara

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“Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.”

–Dylan Thomas, Do Not Go Gentle Into That Good Night

Dylan Thomas’ famous admonition aside, at the appropriate time (and not a minute too soon), most ill and elderly do wish to go gently into that good night. Very gently indeed.

The “rage, rage” we’ve witnessed is not so much at the dying of the light, but at the suffering caused by brutal, invasive and futile procedures all too common in today’s high-tech mode of dying.

Most Compassion & Choices supporters would eagerly bargain away a few days of extended life in an intensive care unit in exchange for final days spent at home, in relative comfort and meaningful communion with those they love. Such folks don’t adhere to the doctrine of redemptive suffering and would rather slip away peacefully if imminent dying would be otherwise prolonged and agonized.

Well, the evidence is in. Recent studies indicate the single most powerful thing a person can do to improve the chance for gentle dying is — simply and courageously — to talk about it.
Talk to whom? First and foremost, talk to your personal physician. It’s never too early for this conversation. This March an important study appeared in the Archives of Internal Medicine. A large, multi-institutional study, it evaluated the quality of life at the end of life for people with advanced cancer.

Lo and behold! Those individuals who had discussed end-of-life values and preferences with their doctors experienced significantly less suffering in their final week of life. A significant reduction in intensive care hospitalizations and high technology interventions accounted for this desirable outcome. Not too surprising, the patients who had talked with their doctors, and who experienced a more peaceful, pain-free end of life, also received less costly care than those tethered to the tubes and machines meant to extend their lives.

But one finding is stunning enough to be a game-changer in end-of-life care. For all the suffering they inflicted and all the cost they incurred, the tubes and machines actually bought no life extension. None.

It’s hard to imagine a worse situation for a person dying of cancer — trapped in an intensive care unit, remote from family and loved ones, suffering through intrusive and painful medical procedures, and living no longer than those who chose to end their lives in hospice, at home, with loved ones at their side.

Start this conversation with your doctor. There’s no reason not to. Unfortunately, your doctor is unlikely to broach the subject, so it’s up to you. You might wonder how to begin this conversation without seeming morbid.

I humbly offer several openers for your consideration:

• “I just read about a study that found all that high technology at the end of life doesn’t work and just causes suffering. Do you know I wouldn’t want that?”
• “My relative (or friend or acquaintance) 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, loving 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 philosophy?”

Note that for unmarried LGBTQ folks, this conversation should include identification of the person you would designate as surrogate decision-maker if you could not speak for yourself, and those who should be allowed to visit you even if more traditional “close family” might object.” Compassion & Choices has visitation forms available for this purpose as well.

If the conversation reveals a physician seriously out of sync with your values and beliefs, find another whom you feel you can trust to honor your wishes. As we often say, “When you’re dying is no time to find out your core beliefs and your doctor’s are incompatible.”

If you are uncomfortable having this conversation with your doctor in person, broach the subject with a letter. You can download Compassion & Choices’ free “Letter To My Doctor” and mail it or hand-deliver it to your doctor at your next appointment.

Call our End-of-Life Consultation Service at Compassion & Choices (1-800-247-7421) if you’d like to report on how your conversation went. We’d love to hear from you.

Best of luck.