Introducing Hospice Matters

Writing about stuff most people don't like to discuss.

May 06, 2022

I plan to write honestly about hospice, about dying, death, and grief.

If that’s my plan, then I best be honest from the get-go. A majority of my future musings on one of our least favorite subjects will be reruns.

From 2012 through 2020, I ran a website about hospice care. By background, I am a now retired United Methodist pastor. The final decade of my ministry was involved with grief support at a Fresno, California hospice agency. Prior to that, I worked in various churches, had a stint in campus ministry, and also served as a hospice chaplain. I have spent considerable time with a topic that’s as popular as root canals and tax audits: our mortality. Everyone has a shelf life. In particular, my hospice experiences prompted me to understand that most of us mortals are intentionally ignorant about end-of-life options.

I continue to believe that providing information about hospice care from a non-medical perspective is a worthwhile effort.

While I don’t consider myself an expert on dying, death, and grief, I know those three life experiences impact, well, everyone. If I can help others better understand how opioids are used for pain relief and for assistance in breathing, or why some grievers are distressed about never crying while others feel equally unsettled about constant weeping (and that both are normal expressions of loss), then I will have added helpful thoughts to the most universal and most avoided of subjects.

Though many of my future weekly musings will be revised reruns, I am confident they will be relevant. Families right now, last year, or a decade ago will:

Ask hospice staff to remove their agency nametags because of not wanting their dying loved one to know they are dying. (Although they often do know.)
Have gentle to heated arguments about starting hospice care now or pleading with dying loved ones to try one more medication or surgery to prolong life. The quality of life versus quantity of days debate happens at every age and in every era.
Frequently assume the hospice staff manages every need on a 24/7 basis, rather than understanding it’s the family and friends who provide the primary support for a dying loved one.

In 2019, I published A Companion for the Hospice Journey. It received praise by nationally-known hospice experts, including Barbara Karnes. A hospice nurse, she wrote Gone from My Sight (aka, “the little blue book,”). It succinctly described the likely changes in a patient as they near death. Karnes’ work is an essential, relevant, and comforting hospice resource. I also strive to keep my perspectives and the information as relevant as they are readable.

I anticipate my posts here will shift from a focus on grief one week to a next one on morphine to a next one on dealing with a dying loved one who isn’t really likeable or loved. Dying, death, and grief are messy. If we think they are orderly and predictable, we will constantly have the proverbial rug yanked from beneath us.

In using Substack—with those reruns from my defunct webpage—I hope a different platform reaches different readers. There will also be original musings. For example, I just finished Amy Bloom’s 2022 memoir In Love. I may reflect on her and her partner’s efforts to legally end his life following his diagnosis of early-onset Alzheimer’s. Dying, death, and grief are subjects where there are always new resources to discover.

After the first weeks of posting, I will likely add a paid subscriber option. Do I want to potentially earn a few bucks? Sure. I also recognize some patients, caregivers, and grievers will only want information that I provide for a brief period of time. As I understand it, reading for awhile and then later vamoosing Substack is easy-peasy. I will keep whatever subscription costs happen in the future at the minimum. What a swell fellow, eh?

Thanks for reading.

Hospice Matters by Larry Patten

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