069 - How can we learn to be helpful in loss?

Building communities and organizational cultures and relationships that actually help.

Welcome back! (or welcome!)

“Finding Words in Hard Times” gives you stories and tools to help you be more comfortable as you help others in hard times.

I told you last week that I’d only be publishing this newsletter twice in June and twice in July. I also told the readers at 300wordsaday.com that I’m taking three weeks off that daily newsletter, from June 16 to July 6.

Rather than review the reasons for stepping back, I want to share with you some of the research and thinking that I’m doing in the background. Sometimes, when I’m working on daily and weekly deadlines, I miss out on the less urgent, but equally important, reading and writing that will help us all.

Over the next couple months, I want to share a bit of what I think is a pretty significant project.

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A family in need

It was Sunday morning, about 8:30. A group of people moved along the front of the hospital, across the crosswalk and into the parking lot. From their slow pace and the clusters and the lingering in groups by two or three cars, I guessed that they were coming from the death I knew had happened a couple hours before.

I was walking to my shift as a hospital chaplain. I knew that my colleague would have provided this group of people with compassionate support. I knew that one of them was holding a packet of grief resources, including a book I wrote for these times.

I also knew that this group of people—a spouse, parents, other relatives—was going to have a challenging day and changed lives

I have more crossed fingers than I have confidence that they will find meaningful consistent support in their bereavement.

One chaplain and one hospital system

I live in a county of 400,000 people and have for most of forty years. I’ve served this community through higher education and churches and chaplaincy. I’ve been to funerals and conducted funerals and cried with friends and family. I’ve researched and written about what people find helpful in loss.

And I’m confident that those of us who offer support are not as helpful as we could be.

It’s not for lack of trying, of course.

The hospital system I’m part of has hospitals in eight counties in Indiana. In our Allen County hospitals, chaplains are present for the first minutes and hours after every death, from fetal demise on. We provide a face and a voice and grief resources. We help with the next step of identifying a funeral home. We make sure all the calls are made to all the necessary agencies.

We aren’t the only ones involved with families. Nurses and patient care techs and respiratory therapists, physicians and nurse practitioners. And coworkers who care and hug and chart and attempt to answer questions. Occasionally, clergy or others from congregations come to visit. Sometimes bosses and people from work. 

In those first moments and hours, we do as well as we can. Not as friends. Not as churches or workplaces. Not as communities. 

That interaction continues after the family has left the hospital. Chaplains send follow-up cards the same week and a year later. Palliative and hospice care families receive calls and mailings during the following year. Those who experienced infant loss have contact and support groups. Many of those hospital groups have annual memorial services.

As often happens when people have challenging experiences in loss, some coworkers have learned from our experiences and have created resources on our own.

Remembering Rowan is a nonprofit that provides financial support for burial and some medical expenses for infants, growing out of the experience of a nurse practitioner who worked at one of our hospitals. No Matter How Small: Understanding Miscarriage and Stillbirth was written by two parents with deep personal and professional experience supporting parents through infant loss. One was my boss at the time, the other a leader of grief support groups for parents. This is hard: What I say when loved ones die draws on my own experience and is what I often actually say. 

As a health system, support for bereaved individuals is earnest, but is not sustained through the weeks and years after. 

Should it be? What responsibility is there for a healthcare system to address ongoing bereavement support? After all, there are many deaths in our community that don’t occur at our hospitals. Whether in other hospitals in the county, on the scene of accidents, in hospice facilities, in nursing care or at home, many people die in our community, with connections to families and organizations.  What are the supports for all of the people affected? Who is responsible?

Recently, Wendy Lichtenthal and others have argued that bereavement care is a public health issue. They write, “Bereaved individuals are at increased risk for numerous adverse outcomes, including prolonged grief disorder, mood and anxiety disorders, existential distress, decreased work productivity, adverse health behaviors, neglect of health care, cancer, heart disease, suicide, and death.” (2024:1).

They propose both institutional and community action. Institutions, particularly hospitals, who have provided support all the way up to the time of death have the opportunity to provide support of the bereaved after death as a way to mitigate the health implications of grief. Communities, as the places where people live, have the opportunity to provide support in a thoughtful, evidence-based, sustained way.

They cast a vision for “a bereavement-conscious workforce; grief-literate, compassionate communities; and health and social care systems that center bereavement as an inherent element of the duty to care.” (2004:4)

Their opinion ends with this call: “The time is right to invest research and practice resources in both institutional and community-based models that re-humanize care and, ultimately, create safe and supportive settings for those who care.”

What could bereavement care look like? 

The family on the hill is still talking. The last few months have been hard for them. And it was a long night. They will be there for a bit.

So we can talk about what that kind of safe and supportive setting might look like.

To be continued…

Reference:

Wendy G Lichtenthal, Kailey E Roberts, Leigh A Donovan, Lauren J Breen, Samar M Aoun, Stephen R Connor, William E Rosa, Investing in bereavement care as a public health priority, The Lancet Public Health, Volume 9, Issue 4, 2024, Pages e270-e274, https://doi.org/10.1016/S2468-2667(24)00030-6.

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As you know if you’ve been reading this newsletter, or talking with me during the last decade, I’m working hard to help people be helpful with words and perspective. What you just read is the first writing about what may be the next phase of that work.

Here’s the executive summary of what you’ll read in the next few weeks.

Humans struggle in the aftermath of death. Bereavement researchers are concerned about the public health cost of grieving. Friends want to know what to say when their buddy’s child dies. Researchers have identified what supportive communities would look like. And have identified broadly who needs what kind of support. And have recommended improving grief literacy. This proposal reviews those concepts and then recommends three research projects based on those concepts: a community-level bereavement capacity study, and study of organizational bereavement cultures, and a “what might your friend need from you” study.

I’d love your comments and feedback as we go along. I’d love any sharing of this work. And I’d appreciate any support as we look ahead to some of the research costs that may come.

And I’m grateful for the support you are giving to people.

Jon