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The blog post I am sharing below resonates personally with me.  It is a reminder that when you are in the moment, all bets are off.  To know about hospice doesn’t make it any easier to accept the idea of hospice when it is your loved one.  This is also why I often argue that regardless of how much hospice will be a household word, it doesn’t mean people will avail themselves of hospice care to its maximum because there is still a spirit of fighting for life.  It should be a reminder that while working with people at end of life is holy work, we should never forget the conflict that comes in making the choices for comfort care instead of aggressive care.

For a Hospice Pioneer, Still a Tough Call

By PAULA SPAN
Paul Brenner, who died last month, became a hospice director in New York City in his 50s.Courtesy of the Brenner family Paul Brenner, who died last month, became a hospice director in New York City in his 50s.

Family, friends, colleagues and parishioners said goodbye to Paul Brenner on Monday. He served as the associate pastor of St. Mark’s Lutheran Church in San Francisco, where his funeral service was held.

Mr. Brenner’s voice had already weakened when I spoke with him briefly a couple of weeks ago. He was only 73, but 18 months of declining health and months spent in hospitals and nursing homes had sapped his strength. Still, when I asked how many people he thought he had helped to die, I could hear a quiet pride in his response. “Oh, thousands,” he said.

For more than 25 years, starting in the late 1970s when the word “hospice” still drew blank looks (and years before hospice became a Medicare benefit), Mr. Brenner led nonprofit hospice organizations. Yet when his health faltered, choosing to become a hospice patient himself proved unexpectedly difficult. That’s what I wanted to talk about.

 

His hospice initiation began unconventionally in Jacksonville, Fla.: A member of the church he led was dying and her doctor wanted to move her from a hospital to a nursing home. “She was very upset about that,” Mr. Brenner recalled. After discussions with a nurse, also a parishioner, and a young doctor, “I said, ‘Why don’t I just move you into my home?’ It was clear she’d live only a short time.”

With the nurse and doctor helping, “we kept her until she died on Easter Sunday,” he said. “After that, even though we didn’t know much about it, we decided to start a hospice program.”

What’s now Community Hospice of Northeast Florida began with eight patients, 14 professional volunteers and Mr. Brenner as C.E.O. “We organized as best we could,” he said. “God seemed to direct and guide us.”

Mr. Brenner went on to take leadership roles at Hospice of Palm Beach County; Montgomery Hospice in Rockville, Md.; the Jacob Perlow Hospice at New York’s Beth Israel Medical Center; and Children’s Hospice International.

“We’d known hospice all our lives,” his son Matt Brenner told me, picking up the narrative. Phrases like “quality of life” came easily to him; he’d vacated his childhood bedroom to accommodate that first Florida patient.

The younger Mr. Brenner now lives in San Francisco and was pleased when his father — who’d come out as a gay man two decades ago — moved there to join the ministry at St. Mark’s, where he paid particular attention to seniors. “His passions had been reinvigorated,” Matt said. “I hadn’t seen my dad with that much energy in a long, long time.”

Perhaps that explains why, despite their family’s history, turning toward hospice was a tough decision. The elder Mr. Brenner underwent a supposedly simple outpatient procedure in 2011, acquired an aggressive staph infection, then was diagnosed with colon cancer and received radiation and chemotherapy. A cascade of problems followed: extreme pain, delirium, deep bedsores, a colostomy, extended stays in hospitals and nursing homes.

Hospice had always represented “a rope that was there for us to grab when we needed it,” Matt said. But they waited to grab it for 18 months.

The fact that many terminally ill patients don’t enter hospice care until death is imminent has plagued the field for years. Multiple factors play a role in this pattern: public misunderstandings, tight-lipped doctors, families in denial, hospice policies and Medicare regulations that may discourage its use. Douglas White, a University of Pittsburgh bioethicist and researcher, talks about “the powerful desire not to be dead.” We all have it.

The Brenners had it, too. “He’d been living with joy and purpose,” Matt said of his father. “We’d been offered the hope that he might get better, and we didn’t want to let that go.”

A hospital was virtually pushing him out the door when Paul told his loved ones he was tired and had fought long enough. That is when they called Sutter Care at Home, a local hospice, and on Christmas Day brought him back to his studio apartment overlooking the city.

Once they did, things got markedly easier. “We settled into a peaceful routine,” Matt said. “No more beeping, no more people running in and out.” They hired round-the-clock aides — expensive, but necessary — and relied on the hospice staff for comfort care.

Some readers here have argued that when their time comes, they want a hospital room and a professional staff, not a home death that will burden their families. About a third of people over 65 still do die in hospitals.

The Brenners saw it differently. In Paul’s apartment they had two months in which to share meals, watch nature documentaries on TV and enjoy visits from friends. “The comforts of home,” Matt said.

On Feb. 7, they hosted a party for 24 well-wishers, who came in shifts to say goodbye. The church organist played hymns on Paul’s piano, concluding with “Over the Rainbow.” “Everyone was singing and crying,” Matt recalled. On Feb. 11, Paul — who had baptized both his sons — performed the much-delayed baptism of his 4-year-old granddaughter from his hospital bed.

On Feb. 22, his sister and his sons kept a final vigil, with Bach on the CD player as he’d requested. “When the music stopped, his breathing got shallow,” Matt said. “He left us with a smile on his face.”

In his dreams, Matt told me, he sees his young, healthy father romping with his sons as he used to. “Death is the final stage of growth,” he’d always told them, and they have come to believe it and to feel both loss and peace.

Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”