Goodbyes

WBUR airs end-of-life issues

This week, Boston public radio station WBUR has been broadcasting a five-part series called "Quality of Death: End of Life Care in America" that highlights some of the vexing issues around end-of-life decisions and the wonderful palliative care services available to help patients and families. According to the station, the segments will be aired together in a one-hour Inside Out documentary on Sunday, May 3, at 8 p.m. and Thursday, May 7, at 9 p.m.

Here's a summary of the project, courtesy of WBUR:
"In this new documentary about end of life care in America, special correspondent Rachel Gotbaum investigates what prevents many patients from having a dignified death. From well-intentioned but maybe unwarranted medical interventions, to the pressure from family members, to the difficult decisions doctors -– who are trained to extend survival -– have to make when treating elderly patients, this program delves into the challenges in America to proper end of life planning and a "respectful death."

• National surveys show a majority of Americans would prefer to die at home, but 80% of us die in hospitals or other institutions.
• One-third of all Medicare spending, or 144 billion dollars, is spent on patients at the end of life.
• Fewer than half the hospitals in the U.S. offer palliative care, a type of care that helps patients decide on end of life treatment.

In this documentary, Gotbaum follows several patients in their last months as they confront some of the most difficult decisions of their lives –- whether they should pursue aggressive and sometimes painful medical treatments that may extend survival or rather focus on how to maintain the best quality of life in their final months. She reports on how trends in the American healthcare system influence their decisions, and she talks to family members who are often the ones pushing for as much intervention as possible. This is a documentary on a topic that people are often reluctant to hear about, let alone discuss; but this program provides information and insight into an issue that all of us will eventually face.

The type of care we receive at the end of life is of profound importance to us all at a time when the lines between technology and humanity are getting blurred.

Apart from the human stories that are central to this program, the financial aspects are also of critical importance. The amount of money spent on end of life care in the US is being carefully analyzed in healthcare circles as a new administration confronts the spiraling costs of the modern healthcare system in a country with an aging population.

How can the healthcare budget match a medical culture in which death is considered failure?"

You can listen to the series by clicking here.

Dressing the babies

A friend passed along a "goodbye" story the other day that I must share because it is heartbreakingly powerful.

It's about a labor and delivery nurse in Florida who sews tiny outfits for the rare times when a baby in her hospital doesn't make it. Written by Thomas French of the St. Petersburg Times, the article recounts the story of a couple, Mary and Steve Spittka, whose daughter was stillborn despite an emergency Cesarean section. He describes how nurse Lois Bineshtarigh helped soothe their pain by baptizing Lindsay Rose and -- with incredible tenderness -- dressing her in a handmade gown with ribbon and lace so the couple could hold her, take photos, and say goodbye.

The wrenching piece was published in February 2003, and nine months later (as I discovered through Google), Lois lost her 16-year-old son in a head-on car crash. She planned to keep stitching gowns for the babies, but first she had to choose a funeral outfit for her own precious child.

Grab some tissues for "A gown for Lindsay Rose" . . . and some more for "This time, she must dress her own son"

Gertrude's final days

Maybe it's just luck, but I often find myself turning on the radio or TV as a "goodbye" story is being aired or teased. The same thing often happens with print publications. A newsletter arrived the other day from the Jewish Family & Children's Service of Greater Boston, an agency that serves people at critical stages of their lives. On page 6 was a touching story about a Holocaust survivor named Gertrude who, at age 94, had outlived her husband and friends.

Gertrude was afraid of dying alone, and the staff of this agency made sure she did not. They also made it possible for her late husband's cherished violin, which saved him from death by the Nazis, to be delivered safely to the United States Holocaust Memorial Museum in Washington. These caregivers gave a precious gift to Gertrude, who had witnessed humans' capacity for cruelty, by enabling her to die with comfort and dignity.

You can read this story by clicking here and turning to page 6.

Consider this . . .

Listen to the wishes of the person who is dying.

Most of us don't want to be alone at the end, so be there for your loved one -- or make sure someone else is there.