My friend, the late poet Diane Callum
… but nobody likes to talk about it. We’re going to anyway.
, wrote a cover story for SN&R back in 1994 that described her journey through diagnosis and into treatment, at age 50, for ductal cell carcinoma, stage 4. In “Breast cancer diary,” she shared with our readers her passion, her anger, the fight she staged against that dreaded disease.
I’d visited Diane at her home in the years before and after the story appeared, but one day she wasn’t there. She’d entered a local hospital and was near the end. By the time I arrived with flowers, her family and friends were already in place, surrounding her with loving attention, calm and peace.
Diane lay with her neck arched back, pale and tiny in the center of the bed. She seemed barely conscious and was breathing loudly with a rattle I came later to learn was common in the last stages before death. Very soon she would be gone. The finality of what was happening overwhelmed me in a way that I hadn’t expected; it didn’t fit with the composed setting her family had created for her passage.
I kissed Diane on the forehead, left the flowers and fled.
It took me a long time to forgive myself for the fact that my first reaction to the death of a friend, as an adult, had been to break into tears and run away. As I’ve learned since, though, it’s not uncommon to feel the urge to run in the opposite direction when death is nearby.
Let’s face it: We don’t like to think about mortality, our own or our loved ones. It doesn’t matter if we’re people of faith or not—death is a giant mystery, the end of everything familiar. We anticipate the pain and grief that accompanies that “end of everything” and will therefore do anything to avoid it as a subject of conversation, even with our doctors and families.
We need to stop doing this.
Because not talking about death can lead to some very bad outcomes. This is particularly true in an age when modern medical technology has lengthened lives and changed the process of dying for many—sometimes creating lingering, debilitating scenarios at the end of life.
When health-care professionals don’t understand a patient’s wishes, with no harm intended, they can tend to continue seeking a “cure,” pursuing extreme treatments at the end of life that can prolong the dying process, be needlessly painful, and place enormous emotional and financial burdens on families.
Meanwhile, polls tell us that three-fourths of Americans would actually prefer to die in peace at home surrounded by family. Too bad, because three-fourths of us are predicted to die in an intensive-care unit, hospital or nursing home attached to feeding tubes, monitors and breathing machines.
What’s the cure for this problem? It starts with more conversations—between individuals, families and doctors—about end-of-life choices. As it turns out, there are plenty of resources in the greater Sacramento area that seek to help us kick-start this process.
One is the nonprofit Coalition for Compassionate Care of California, the lead agency in the statewide rollout of something called POLST (Physician Orders for Life-Sustaining Treatment). Adopted in California two years ago, the pink POLST form was created to help seriously ill individuals think through and communicate their wishes when it comes to medical care near the end of life. As opposed to an advance health-care directive, which allows an individual to choose the person they want to speak for them if they are unable to speak for themselves, the POLST form is a signed document that tells a patient’s exact wishes about certain medical treatments. Members of the coalition have trained 500 health-care professionals statewide in the use of this form. “I think of it as preventive health care,” said Chris Evans, a registered nurse and co-chair of the Compassionate Care Alliance of the Greater Sacramento Region, who helped write the POLST curriculum.
Evans also cited the critical role hospice can play in helping care for patients near the end of life with its philosophy that keeps the dying free of pain so that they can make the most of the time that remains to them. And yet, hospice—which can help patients through their last six months of life—is often misunderstood.
“Hospice is this wonderful Medicare benefit,” she said, and yet it is either disregarded or “used by most people very late in the game.”
Kathy Glasmire, associate director of the nonprofit Center for Healthcare Decisions, acknowledges that there is much yet to be done in the realm of end-of-life education. But she points out that the Sacramento region may actually be ahead of the curve in the state when it comes to quality of care at the end of life. She referenced the Dartmouth Atlas of Health Care, a study published in the Health Affairs journal in 2005, which examined Medicare claims over a four-year period. It found that “Sacramento area patients spent fewer days in the hospital and in the ICU … and that the quality of care was deemed better and that Medicare costs were lower,” she said. “Compared to other parts of the state, quality is better in Sacramento and costs are lower.”
Glasmire thinks this is likely due to the strength of the local coalition, which has, she said, begun to “bring the four systems [Kaiser Permanente, Mercy, Sutter Health, UC Davis Health System] together” in Sacramento around end-of-life care. Though typically competitors, the large hospital systems can benefit from working together on this issue, she said.
Still, it’s an uphill battle to get both individuals and health-care professionals talking about choices at the end of life.
For my part, my friend Diane’s passing wasn’t the first time or the last time I’ve found myself in death’s neighborhood these past decades (see “The 100 things,” SN&R Feature sidebar, on page 25). But I can report that I’ve at least grown past the stage where my first response is to flee when death enters the realm.
Ultimately, what makes a good death? I’ve come to believe it’s about the resources that are or are not utilized; the conversations that do or do not occur. As you can see on the following pages—where we publish just a sampling of answers our readers sent in response to our “What makes a good death?” questionnaire—there’s a lot to talk about.
We hereby present SN&R’s attempt to tackle the “taboo” and begin a discussion with you, our readers, about what it means to seek a better end.