How do you feel about death? Repulsed? Fascinated? A sense of longing? Fear?

I’ve always been fascinated by death, with a small side of fear and revulsion. My faith teaches me that death will be a relief from the longings and struggles of earth. The thought of leaving my earthly body behind while my spirit sails off to heaven to dwell in God’s presence makes me sigh just thinking about it. While life earthside has its pleasures, much of it is just hard.

Years ago in college, a friend who worked with the dying as part of her social work degree described her experience with those patients: “as the body becomes less, the spirit becomes more.”

I loved that description and it has rung true for me.

I haven’t encountered death in my family recently, but as a nurse, I come into contact with end of life with some regularity.

Some deaths stand out to me more than others. One was a tiny old lady on Comfort Care, which is when hospital patients are receiving only palliative care to keep them comfortable in anticipation of death. We’re no longer treating their illness; our goal is to make these patients as comfortable as possible as they approach the end.

This woman wasn’t my patient, but during the night, I felt drawn to her room and came in and took her hand. She was close to death. No longer conscious, the time between each breath she took was growing. I spoke to her, then just quietly stayed with her. The primary nurse noticed I’d come in and joined me. As we stood on either side of her, she took her last breath.

I felt privileged that she had somehow “called” me into the room to be with her in her final moments. I felt grateful that she hadn’t died alone.

Not all the hospital deaths I’ve experienced have been so tranquil. And once, after a patient expired, the family asked me if I thought maybe his spirit was still in the room.

Looking back, I suppose it is possible that his spirit had lingered, but looking at his body in that moment, mouth hanging open in the sometimes grotesque expression of death, it was clear to me that he had departed this earth. I gently told them he was gone.

It made me sad to say it, because they weren’t people of faith. To them, there was no future for their loved one after his death.

There is a limit to how long loved ones can stay with their departed family member’s body after death in the hospital, and that family stayed until the last possible moment. Because there was no hope for them of reuniting with his soul someday, they had difficulty letting go of the husk he had once inhabited.

Now that the Chaplain works in Hospice Care, we talk together about death more than we once did. I have firm, unambiguous ideas about what I want for my end of life care; now the Chaplain understands why I express those views so strongly.

The Chaplain actually has more books about death, dying, and grief on his nightstand than I do on mine, and I hope someday to have him tell you about some of those titles. But for now, here are some of the books I’ve read that have informed my views, fascinated me, and made me think.

1. Stiff: The Curious Lives of Human Cadavers, by Mary Roach.

If you’ve read anything by Mary Roach (I used to enjoy her in Reader’s Digest), you know she is at the intersection of smart and funny. I’ll never forget the first time I read this book, while I was completing my prerequisites for nursing school, in particular, Medical Microbiology, which for me, blended beautifully with the content of Stiff. This is a great book for the inquisitive mind – for anyone with some fascination with what happens to the human form after death.

2. Being Mortal: Medicine and What Matters in the End, by Atul Gawande.

Reading Being Mortal was life-changing for me. As soon as I’d finished the copy I got on inter-library loan, I asked my own library to buy a copy, and pre-ordered the paperback version months before it was set to print and ship. As I mentioned in this post, everyone who is going to die should read it. So many people go through life without a plan for how they want the end of their life to look like. As it turns out, many people get a death they never would have wanted by being ill-informed or failing to clearly communicate with the family members who will be making decisions for them. This book is thought-provoking and helps you consider the conversations you could have with your loved ones and with your doctors – people who will be making decisions for you when the time comes, and also those who you may need to make decisions for.

3. When Breath Becomes Air, by Paul Kalanithi

I heard all the reviews and interviews about this book when it first came out, but I confess the first real interest I took in it was when I read about how Lucy Kalanithi found love after her husband’s death. And I listened to this as an audio book only after the Chaplain got it through Audible.

The book was interesting to me as a neuro nurse, since Kalanithi was a neurosurgeon. Interwoven with the story of his life, the book explored the relationship between doctors and patients, death and dying, and priorities. Because Kalanithi had an English degree in addition to being a brain surgeon, it was also superbly written. He described some of the surgeries he performed, which I’m sure wouldn’t be a selling point for everyone, but was for me.

I had trouble hanging on at the end when his wife took over, not because her writing wasn’t as good, but because it was so sad that at times it was hard to listen to. Also, a female voice read the part Lucy Kalanithi wrote, and I found myself mentally checking out when a different voice picked up the story.

The book does a good job of examining end of life care, what to consider when you make choices about your healthcare, and how priorities can change over time and depending on the prognosis.

4. Extreme Measures: Finding A Better Path to the End of Life, by Jessica Nutik Zitter, MD.

I first heard about Extreme Measures in this 20 minute-long interview. Along a similar vein to Being Mortal, this title delves into the default settings that take one to unconscious months on a ventilator at a long term care facility: a lonely, meaningless existence almost no one would ask for if they knew what it entailed. Yet unless we give permission to doctors to let us die (and sometimes even when we do), that is where we can end up. The book explores how we can find an alternative to that default.

The book hit close to home for me, since in my experience at the hospital, time and again I have seen doctors who understood a grim outlook for a patient. Then, because of poor communication skills, avoidance of hard truths, and maybe feelings of failure, they were unable to communicate reality to the patient’s family in a way the family could understand. Sometimes doctors do clearly communicate the patient’s prognosis, but family members refused to hear the truth because it wasn’t what they wanted to hear. It left them unable to make the decision to let a loved one go – resulting in what felt more like torture than nursing care for those of us charged caring for the patient.

Related, there’s the 24-minute documentary on Netflix, Extremis.

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Maybe, even if you believe you will go to a better place, the end feels scary to you. Maybe you take for granted that your loved ones will know what you want when you are near the end. Perhaps it’s hard to even think about not being able to make decisions for yourself.

Even if it feels uncomfortable, have those conversations with your family. Don’t assume they know what you want. Tell your spouse what you want. Make sure your adult children know what you want. Let more than one person know so that in the end, when your loved one is doubting their decisions, they can talk to another person who knows your preferences for end of life care.

Fill out a form that designates a health care proxy. Write out what your wishes and priorities would be for the end. Make sure those close to you, especially the person who will be making decisions for you, knows where that document is. Talk to family members about what they want. It isn’t a conversation that needs to happen all at once, but far too often, it’s one that people don’t have soon enough.

Being left to make decisions for a person who you know intimately, but haven’t had an end of life conversation with, can make a deeply painful experience that much harder. Consider making a living will, a document that lets your caregivers and family know in writing what you would want in the event of something like terminal illness or permanent unconsciousness.

Read some of these books. They will help you better understand what kind of questions to ask, and sometimes, as in Roach’s case, help us appreciate the absurd and fascinating nature of death in human form, and maybe even laugh about it.

I know this stuff can be hard to think about. Yet the adage “Fail to plan, plan to fail,” comes to mind. Sure, maybe you will die in your sleep after a long, satisfying life. But on the off chance that isn’t in the cards, do what you can ahead of time so that the end of your life can be a reflection of your values and a meaningful goodbye.