It often starts with, “I wish that …”

I wish that we had talked about how sick he was. I wish she had told me what she wanted for her funeral services.  I wish we could have admitted that death was close. I wish we had stepped off the medical train and spent our last days sitting in the sun.

These are some regrets of the living, and I suspect the dying have some of their own. Hearing comments like these motivated me to circle back to the theme of an article I wrote in March 2020: “All that Matters in the End: Can we Talk?” and the book “Die Wise: A Manifesto for Sanity and Soul,” by Stephen Jenkins.

Jenkins holds a theology degree from Harvard, a degree in social work, and worked as a palliative care consultant in Canada. His book is a straight talking and soul-searching plea for more acceptance of death and dying and in his words, “to know death well and be useful when it comes.” To state the obvious, he says his book is for all those who will not live forever.

The words of former senator Ben Sasse, currently being treated for pancreatic cancer, echoes the same message that “life needs to be lived and prioritized with the understanding that it is limited.” That really is the point.  It is not so much about the dying, but rather living with that knowledge and getting comfortable discussing it.

Often, we just don’t have the language, confidence or skills to introduce and navigate the topic. Is it any wonder people are afraid of saying the wrong thing?

Jenkins uses a simple example of ignoring the “D” word. Following a death, when someone says they “lost” their loved one, he is tempted to ask: “How?”

To be fair, living in a death phobic culture, if a person has had little to no personal experience with death, how can they be expected to find the words?   

Looking back after a death, sometimes offers a different perspective because only after can we appreciate how much time we actually had and when it was running out. In the meantime, so much can go unsaid, and this goes both ways.

When the goal has been to “fight” a cancer or any other progressive disease, when is it ok for the dying person to stop trying? In Jenkins’ words, “we have to know how it is for dying men or women who are not allowed to know they are dying as they die … and how not giving up is the only show of love and commitment tolerable to those who love them.”

I have had patients whisper to me that they are “ready” but are unable to admit that to family and risk the appearance that they do not care enough to keep living. That is a lot to hold onto as energy fades.   

There is a long list of (understandable) reasons contributing to this reluctance to name the elephant in the room: hope for a miracle, death talk is bad luck, anxiety about saying something wrong, denial or the sheer mystery of it all.

Open communication could, however, lead to earlier and more genuine conversations, opportunities to learn from each other, and to have the information needed to best align the wishes of the dying individual with their end-of-life care. 

From a practical standpoint, decisions still need to be made. When communication is lacking, the default often falls to keeping those appointments and scheduled medical treatments and leaving many decisions to the family.

Most American do not plan ahead

Although we plan for most of life’s milestones, only about 20% of Americans have executed any funeral or burial arrangements. The Medicare Hospice Benefit is available to patients with a prognosis of six months or less, yet more than a third received hospice care for 10 days or less in 2024, per CMS data. That can mean less time for the hospice team to support, educate and prepare the patient and family.

Jenkins emphasizes that “dying people need a faithful witness to their dying, not someone who will banish what is hard and demanding about dying.”

For some, this just may not be possible, and we need to believe that we are all doing the best we can during life’s biggest ask. Waiting until the crisis, or the death, limits options and opportunities for truth telling, good-byes, reconciliations, and words of gratitude.  Being prepared does not lessen the grief or soften the blow but keeps us truly connected until the very end.

Jenkins takes his manifesto one more step and emphasizes that how each of us decides to approach our own death should reflect the impact it has on those around us. “You won’t be there to see it, but your willingness to live your death, to die wise, ennobles those who come after.”

It could be a gift to all involved to let go of the “fight” and be able to accept (even a little bit) the inevitable with dignity and grace.

Although this is one way, it is not the only way.  How we approach our dying can be unpredictable, messy, and not for the faint of heart. 

How do we bring death back into life? There are no perfect words, circumstances or buttons to push to initiate a discussion around death and dying. It could happen spontaneously after watching a movie, attending a funeral, or hearing a story about how the end-of-life went for someone else.

Completing advance directive forms or receiving a serious diagnosis should prompt a discussion around our wishes for future and end of life care, at least with the health care proxy. Ideally, these conversations should not wait.

When I asked my son, an alternate proxy, to come by to talk about my advance directives he walked in hungry and was holding a pizza. I will admit it gave me pause, but I took a deep breath and went for it. 

Making conversations about death, dying, and grief more acceptable and common is one way to help us all to process our finite lives.  We may be the one who is literally dying to talk or the one who needs to pull up a chair, to sit and listen or simply ask, “what matters to you right now?”

Creating these opportunities can open the door to sincere and open-hearted connections that can be magical and sacred, help the dying to tie up loose ends, and hopefully leave loved ones with fewer regrets. At the same time, we need to respect that not everyone wants that door opened.  They are not going to “go there.”

Bonnie Evans, RN, MS, GNP-BC, GC-C, lives in Bristol and is a geriatric nurse practitioner, End of Life Doula, and certified grief counselor. She can be reached at bonnie@bonnieevansdoula.com.