‘Tis the season for gift giving and the odds are good that you received one you didn’t really want, like the proverbial gaudy tie, the useless kitchen contraption, or the itchy misshapen sweater. It’s the thought that counts, right?
When getting what you want — the right medical care at the end of your life — really matters, getting what you don’t want is the rule rather than the exception. I have studied end-of-life care for more than 25 years. Here are a few key points I’ve learned from my research and from extensive interviews with caregivers of all backgrounds and experiences:
- The vast majority of Americans say they would prefer to die at home, surrounded by loved ones. But most of us die alone in a medical institution of some kind, fading away in a technological cocoon that could not be further from the setting most of us would prefer.
- Most of us would like to face as little pain as possible at the end of our lives. Yet more than half of us suffer with moderate to severe pain and other completely controllable symptoms in our dying days.
- Individuals who have experienced hospice care give it glowing reviews. Unfortunately, only about half of Americans are referred to hospice as death draws near, and many of those who enter hospice do so during the last few days of life, too late to take full advantage of all that it has to offer.
- For those who are left behind, regrets and second-guessing all too often cloud the roles they played and the decisions they helped make about managing a loved one’s final days.
During this season of giving, what better gift could you give those you care for — and those who will care for you — than the peace of mind that comes with knowing the kind of care you and they want at the end of life? You don’t need a lawyer or a formal document to express these wishes: a simple conversation is actually best. In addition to giving peace of mind to those you love, such a conversation can substantially increase the chances you will get what you want at the end of life, all without spending a dime.
How can you remember to do this? Use as reminders any gifts you got this holiday season that you didn’t really want. Keep in mind that such gifts were given with the best of intentions. Well-intentioned but misguided choices about end-of-life care may be in your future unless you spend some time having heart-to-heart conversations with those you love about what is important to you when that time comes.
It’s important to have the same conversation with your doctor. Most doctors are no more comfortable talking about end-of-life care than you are, and all too often avoid the subject. So do them the favor of starting the conversation yourself — they will generally be relieved and more than willing to help walk you through the options.
Letting your loved ones know exactly what you want for that last big holiday and giving your doctor permission to talk about end-of-life options could end up being the best gift you ever give — and get.
James Hoefler, PhD, is a professor of political science at Dickinson College in Carlisle, Pa., who specializes in end-of-life decision making and the right to die. He is the author of four books, including “Managing Death,” and is developing a website devoted to providing patients and their loved ones with advice from caregivers about end-of-life decisions.
I worked in hospice admissions and spoke with many patients and families over my career. There was no simple guide I could find to what the choices are and how the conversations should be managed. I wrote such a guide last years – Dying Well Prepared;Conversations and Choices for Terminal Patients. It’s acceptance has been gratifying and makes me realize how many people need this type of help.
In our case, death is so certain and unpredictable that none wants to hear anything on that certainty. I couldn’t get my daughters (2) into a discussion on my end-of-life wishes. I have put it in my daughters’ laptop.
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