Until Louisa’s accident, you could almost always find her working in her garden, pulling weeds, deadheading old blossoms, coaxing tomato vines up their stakes. Well into her 80s, she still made a full midday meal every Sunday for her family and an ever-shifting gaggle of neighbors, grandchildren, and friends — basically anyone who showed up hungry.

As vigorous as Louisa was, when she stumbled and fell earlier this fall, it changed everything. Landing awkwardly on the hard ground, her skull hit a paving stone, causing bleeding inside her brain that led to immediate unconsciousness. After Louisa was rushed to the local hospital, she underwent emergency surgery, but it yielded no improvement. Still unresponsive, she was transferred to a quaternary academic medical center for further evaluation and treatment. But there was nothing more to be done.

As her garden hibernated beneath piles of dead leaves and bits of snow, no one could believe this had happened — or imagine life without Louisa. The 180-degree pivot from healthy and upright to comatose left them breathless.

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Family members encircled the hospital bed where she lay: broken bones set, minimal brain activity, a machine breathing for her. I asked them whether Louisa had an advance directive or a living will. Their silent stares were my answer.

It’s not an unusual situation, and they weren’t alone in saying no. In Virginia, where I live and work, nearly 5 million adults don’t have advance directives, including many of the patients I care for at the University of Virginia Medical Center. Nationally, a whopping two-thirds of Americans lack them. But this holiday season, it’s my hope to start to change those odds.

Advance directives are formal declarations of your last wishes, should the unthinkable — a fall, stroke, car accident, aneurysm, heart attack, or other incapacitating event — befall you. They explicitly lay out the extent to which you want lifesaving measures (breathing and feeding tubes, resuscitation if your heart stops, and the like) when other remedies won’t improve your odds of survival; or when, as with Louisa, there isn’t anything more than can be done and you will likely face your remaining days in an unconscious, possibly vegetative state.

In my practice as a palliative care nurse practitioner, in my classes teaching nursing and medical students, and even when I share meals with friends, I often work advance directives into the conversation. Some people twist in their seats, fumbling through their answers, while others are curious and upfront about what they do and don’t know. Still, I press.

I keep a stack of “Five Wishes” worksheets — a simple pen and paper guide to creating an official advance directive — in my office, car, briefcase, even in the guest rooms of my home (Harvard Health Publications, AARP, and others also offer them). And if I don’t have the paper copies on hand, a quick email later and my friend, colleague, student, patient, or family member has what’s needed to get started.

Advance directives get a lot of bad press for being macabre. But I urge you to think of them as love letters to the people you adore. In these documents, you define your last wishes, set parameters for care, and help those who will be caring for you make decisions based on what you want and, just as important, what you don’t want, when curative treatments are off the table.

These love letters safeguard those thrust into the difficult position of making medical decisions for you — some about life and death — so they don’t have to be guided only by well-meaning strangers like me, as Louisa’s family and countless others have had to do.

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Advance directives are easy. They don’t take long to complete. Anyone can create them.

As families gather for the holidays, fretting about food, finances, gift giving, politics, and more, I urge them to ask everyone around the holiday table — middle-aged, old, young at heart, and everywhere in between — the following questions. (They’re the same ones I ask my patients who find themselves at various stages in the trajectory of life-limiting illnesses, bringing into razor-sharp focus what matters in the time they have left.)

  • What would you want done for you if the unthinkable happened — like a catastrophic fall or a major stroke — and treatment options are limited?
  • Would you want every medical intervention, or only some?
  • Do you want to die in a hospital or, if it’s possible, at home?
  • Are there things undone you wish to tend to, people you want to see, and things you want to say?
  • Are there things you fear, wonder, or wish for?
  • Essentially, what really matters to you?

When death is imminent, perhaps a matter of days or weeks, patients I’ve had the privilege of caring for often want to leave the hospital and spend their final days in a favorite chair, with a favorite pet, satisfied by favorite meals in the comfort of their own home. Others wish to express their love and gratitude for those around them, imparting last thoughts with purpose, dignity, and humanity. Some want to connect with a loved one with whom they’ve sparred.

To do any of this, they need to declare their intent.

No one needs to wait until death is near to understand or crystallize their last wishes. There’s no time like the present — and no time like the holidays, when family and friends gather — to ask those you love, as well as yourself, about what they want the end of their life to look like, no matter whether that day seems far away or if it might be closer.

The only way to find out is to ask.

Kenneth R. White is a palliative care nurse practitioner at the University of Virginia Medical Center and an associate dean for strategic partnerships and innovation at the University of Virginia School of Nursing.

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  • For me, Kenneth’s framing of an Advance Directive as “a love letter to those you adore” is a persuasive way to weave the AD conversation into our social fabric. Normalize the conversation.

    In our community, we are making great strides to raise awareness about Advance Care Planning, palliative care (what is is and isn’t), the POLST, etc.

    Here’s a short video that is used by PeaceHealth St. Joseph Medical Center in their ACP program — “Have the Conversation.” Three people, three perspectives — and the impact.

    https://www.youtube.com/watch?v=HCKSWNvhDhY

  • A very significant article about life. This is something that my husband and I have always had; we have spent too many years of either experiences with the patients at the ER where we first met; and throughout our lives together, with so many people in our families who have passed on, leaving the family members stymied as to what were the parameters of those of us who are the offspring of our beloved parents or family members.

    Just as one discusses the beginning of one’s life. where those gathered address the wishes for the younger generation as to university, majors in the individual’s endeavors, and all that entails, so does the topic of one’s wishes to be made a credible decision that is the law, needs to be a discussion, just as important. I would say even more significant than anything else in a family situation; true too for those who do not have any family members either.

    The only aspect of this discussion must also include a DNR, because an advanced directive is one document that addresses the care of the individual who is probably going to live for a brief time, and the desire to not have any lifesaving interventions, is a very different dialogue about an entirely different experience.

    Thank you for writing about this topic of life, and especially when the probability of the whole family being present is greater than not.

    The final word from my own perspective about the way that this dialogue is best conveyed with the individuals present, is to address the seriousness of the discussion, and adding the family stories about the shared loving experiences with those present too; many individuals who are uncomfortable with this topic, benefit from the sharing of the good times that they all experienced throughout their lives. I hope that everyone who is together during this holiday season is doing precisely this loving exercise of making sure that the individuals are going to receive what they want for themselves, when the time is upon us all.

  • I love that this article came up around holiday time. I’m an NP student focusing on this for my DNP project, and am aiming to implement this at a primary care practice office to determine if early conversation makes a difference. I feel like the more comfortable practitioners are comfortable talking and informing patients about it, the more utilized they will be. There are many people who simply don’t understand palliative v. Hospice, as you’re well aware being a palliative NP. I appreciated reading this article, and would love any ideas you had for me/conversation!

    Thanks!
    Sara

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