Finishing up my first book about end-of-life issues, I never used the word “grieving” until I happened upon Bill Maher’s TV programs about how we grieve. Grieving? What in the world is that? I asked myself. Must be something that happens after I leave the room. I don’t remember any course on that in medical school, nor any mention during residency or fellowship. When a patient died, we sometimes came together as a team to review what could have been done better, and what we regretted. The term “grieving” never came up.

When does grieving begin? Why is it kept so secret from patients and families and – most tragically – healthcare providers?

Around 1980, El Camino Hospital in Mountain View put on a presentation about the ICU experience. The 3 invited “patients” who’d spent at least 3 months in ICU were asked to recount their experiences. Most of the medical, nursing and auxiliary staff attended, it seemed like 200 souls. We were excited to receive these patients’ thanks for saving them.

Alas, all 3 thanked us for our efforts, but two of three said they could never forgive us for what we’d put them through. What? Good grief, all the effort, heart and soul we’d put into their survival, and this was our thanks? Crestfallen, the nursing department arranged a series of group meetings to deal with their hurt. We doctors stomped off to our offices and never again mentioned the subject. There was no “good grief” to be had, because we denied we’d been dealt a blow that would need tending.

Looking back, I realize what the subject really was: these patients were grieving for what they’d suffered and the capabilities they’d lost. I believe the healthcare providers were grieving for what we hadn’t been able to cure, the gratitude we’d failed to win, and our own individual wounds that had drawn us into the healing professions. Three books and 45 years of medical practice later, I contend that we are failing ourselves and our patients by denying our need to grieve.

When does grieving begin?

So many patients report grieving begins not at the end of an illness, but long before we first go to the doctor’s office. With that first symptom, we wonder if this could be “the big one” that will take us away. Have we lived well enough to deserve grace? What will we face if we haven’t? One patient describes her thoughts getting her six-monthly CT follow-up for a malignancy. She finds herself dealing with everything from practical to spiritual issues. How will I set my husband up with a new wife if I die? What was the meaning of my life? Where am I going? Will I go there (if there is a “there”) alone? Am I blessed or doomed? Or suddenly irrelevant?

Historically, 26% of dialysis patients die each year. That means if we round on 4 chairs at the dialysis unit, one of those patients won’t be alive next year. Those figures are improving somewhat as we modify dialysis regimens, but when we find one of those four chairs empty we know what it means. The patients around that empty chair know what it means and that they may be next. Much of grieving is an inner process, but much of it is communal. HIPPA has outlawed sharing even one word of support at such moments. Grief, reminiscence, honoring the dead have been institutionally terminated.

What is the experience of grieving?

Denise Eillers RN emailed me about her 23 years dialyzing her husband at home. They were very good years, but the first thing she said about the last 6 months was the grieving:

Grief was not a huge, terrifying abyss that I struggled my entire life to evade. Rather, it evolved during many small losses, such as daily having to do more for Jerry in ways so incremental they were barely noticeable. It came from the slight reductions in capability, invisible to healthcare providers. Talking about the next vacation we knew we wouldn’t take. Thinking about what I’d do once he’d died, then feeling guilty about that. There was more than enough guilt to go around. So for me grieving started early, as I believe it does for most renal patients and their families, perhaps with the first elevated creatinine level, or the imprint of the socks on ankles swollen from renal insufficiency. But now, bereavement feels like a shrine to me, in which I experience many things:

• Writing a journal
• Sacred and yearning feelings
• Reality and unreality
• Guilt and cherishing
• Past and present mixed
• Yearning to forget, yet fearing it
• Guilt for feeling joy now, when he can’t share it
• Amazement at how this dear one was cherished by those who knew him
• Living with the absence of the one who shared a thousand intimate memories

Are these what doctors and nurses do at the end of an illness? Do we make room to recognize our grieving? We’re aware that we’ve lost someone and it’s time to move on. How often do we suspect there’s something more we should have done? Is that “something” another diagnosis, another procedure? Or perhaps it’s taking time to share in the grieving?

Is this secret guilt only mine? In Kitchen Table Wisdom (2006), Rachel Ramen wrote several chapters that end when a physician who’s run out of technologic treatments says to a patient who asks what comes next, “I have nothing left to offer you.” Rachel responds how wrong that statement is. In my own opinion, this refusal of care presumes that a physician’s only value is in providing a cure. Are we that shallow, or only that locked down?

Our patients and their families have been in a relationship with us, whether it lasted only a few days or stretched for decades. To abandon them and withdraw our expertise and empathy at a crucial time inflicts an additional wound.

I’d like to take that a step farther. It’s much safer to be a caregiver than a care receiver. When we feel secure behind all of our stereotypes – the perfect doctor, the always compassionate nurse, the therapist following orders, the patient whose job is to comply – we’ve closed off what is required to heal. God didn’t invent grieving on a bad hair 

day. She or He knew that grieving begins with the first worrisome symptom and continues for months or years after we leave this world. When we refuse to recognize that we’re grieving, we block the healing we came to this work to achieve for ourselves and our patients. Grieving evolved as a series of steps to wrap ourselves around this new reality without the person, or the capabilities, or the illusions we’ve lost. Probably all societies and all religions have structures to reinforce these steps. We ignore them at our own jeopardy.

What can we do about it?

Listen well to the voice of grieving. Feel it in your belly, your heart, your aching shoulders at the end of a day. Don’t just stomp off to your office. Notice how your patients are willing to help you recover from their illness. This is the gratitude they’re offering in return for whatever you’ve done.

Many years ago I had the good fortune of joining the renal transplant program at California Pacific Medical Center in San Francisco. At that time we had a board with the photo of every patient we’d transplanted. Patients and staff would study it on their way into clinic: “Oh, yes, he’s my transplant sibling (received from the same donor).” “Remember the jokes she’d make after she got her kidney?”

The question came up, what if that patient had died? Should we remove their picture as too discouraging? Current patients, families and most of the staff agreed: Absolutely not! They may be gone, but for us they never will be gone.

That devotion, too, HIPPA has killed off. It doesn’t mean we should be unindicted co-conspirators against grieving.

And one step more: notice when you’re feeling the need to reach within yourself for…something. Somewhere in there we embody the archetype of the Eternal Mother, who yearns to soothe her sons and daughters’ pain. We each carry an inner Eternal Father, who can ground us, link us to our ancestors and to the adults our children will become. Standing by the dying, there is no need to judge ourselves or others for failing to say or do the right things. Silent presence may serve better than words. Often, what’s most needed is not speaking, but listening. In the words of Norman Maclean in “A River Runs through it,”

“Eventually, all things merge into one, and a river runs through it. The river was cut by the world’s great flood and runs over rocks from the basement of time. On some of the rocks are timeless raindrops. Under the rocks are words, and some of the words are theirs.“

“I am haunted by waters.”