Photo: Hospice patient Joan Baldwin-Branch gets help from her son Jay Baldwin, right, and Gateway Hospice aide Melissa LaLonde. (Steve Mellon/Post-Gazette)
PITTSBURGH--Nearly 7,000 people die each day in the United States. At 11:35 p.m. on May 23, as a CD played Beethoven's Fur Elise, in her bedroom on one of Pittsburgh's highest hills, Joan Baldwin-Branch was one of them.
Few others approached their death as she did.
The 75-year-old former hospice nurse spent months blogging about her philosophy of life and death as her pain built from ovarian cancer. She
Deciding Against More Surgery
Joan Baldwin-Branch 's physical battle took a stark turn in late March. Because her cancer had returned after removal of her ovaries and two rounds of chemotherapy, she was scheduled for extensive surgery on April 18. Her oncologist said it could add a year to her life, instead of the few months she could expect otherwise.
Joan had wrestled with the value of undergoing the surgery -- which involved removing her uterus, cervix, abdominal lymph nodes and more -- versus the arduous recovery that would be involved. And she considered the quality of life her condition would allow during any additional time she gained.
In mid-March, the decision was made for her. Unbearable pain at home sent her to the hospital for a week, during which difficulty with breathing as well as the pain convinced her that her body wasn't strong enough to withstand the surgery.
She decided to forgo any additional cancer treatment and begin receiving hospice care at home, with a focus on comfort and pain management. One doctor told her she had the pain threshold of a Navy SEAL. But even she felt paralyzed at times by pain she said could be worse than childbirth.
Her oncologist, Robert Edwards of the University of Pittsburgh Medical Center, observed, "It was unusual how frank she was in her questions -- they were brutally honest. Most patients are encouraged by their family to never give up fighting or to admit that cancer will be the cause of their death, because admitting that is somehow a failure."
Many hospice professionals and researchers [http://bit.ly/1iM7Sfq] say doctors are also responsible for leading their patients toward every conceivable option other than acknowledging a life has neared its natural end.
"Our health care culture is life-focused, and dying and death are not part of the regular conversation," said Greg Yoder, author of Companioning the Dying and a spiritual care and bereavement coordinator in Tucson, Ariz. "The more successful we are at postponing death, the more difficult it's become to include it as a viable option of conversation."
Coaxing Others Out of Denial
Widely admired as an educator since making a midlife decision to become a nurse, Baldwin-Branch was the one coaxing others out of denial of her terminal illness. They were helped by her many jokes about her saving time and money once she lost her hair during chemotherapy, and about her "loopiness" from pain medications.
In her final months, which she sometimes referred to with one of her ever-present laughs as "Joan's Journey," she sought to leave a legacy that's unusual in America. Death is a difficult subject, although concealing it is hardly ideal for emotional wellbeing, noted Stephanie Eckstrom, a social worker who teaches the "Death and Dying" course at the University of Pittsburgh's Bradford campus.
"It's good that we expect people to live, but there's a missed opportunity for conversation -- to have a meaningful dialogue with people that are important to you about what's important," Eckstrom said.
Baldwin-Branch wanted to lead as many people as possible to face death more honestly,
communicate about it more openly, accept it more willingly as a natural and inevitable stage of living.
To many admirers, she succeeded, though her journey took a surprising twist near the end.
"As I have said before, I am the lucky one. I get to deal with my mortality and I consider that being one step ahead of the rest of you! ... I am blessed by having the time to let everyone know what they mean to me before it is too late."
--From Joan Baldwin-Branch's blog, “meandcancer” (Feb. 12, 2014)
‘Whacked by 2-by-4” Diagnosis
Baldwin-Branch had been exposed often to death as a critical care nurse and personal care home operator. She had escorted hundreds of individuals through their final weeks once she entered the hospice field. Then she received her own "whacked by a 2-by-4" message, as she called it, in October 2012.
She wasn't one to cry about her disease. Friends and relatives had never known her to complain -- not through two difficult marriages, not when raising three children largely on her own while attending nursing school, not when giving most of her money to others she felt had more needs than she did.
Baldwin-Branch was a classic stoic from a blue-collar Pittsburgh family, disinclined toward self-pity. Raised a Catholic, she had in her later years become more of a New Age philosopher who believed a "universal energy" determines how and why such things occur, whether good or bad, and people have to adjust.
"It was just something that was and is," she said of her diagnosis months later.
"No matter what happens to you, turn it over" – she said, clasping and twisting her hands to emphasize the point -- "because there's always another side."
"I have had an ongoing love affair working in hospice. Others may think that we are hardened to death & dying. Nothing could be further from the truth. We are such emotional beings. We cry, we pray, we hurt, we grieve and yet we go on giving of ourselves."
-- From “meandcancer” blog entry, Feb. 15, 2014
Baldwin-Branch wasn't always comfortable with death. Forced into a funeral home at last after her grandfather's death when she was 19, she refused to look in his open casket. Such attitudes changed when she became a nurse and began working in the critical care unit at North Hills Passavant Hospital and later worked in personal care and nursing homes.
Touched by the Dying Process
Something about the dying process deeply touched her. In operating personal care homes in the 1980s, Baldwin-Branch made it her mission to have fading residents try to remain there instead of shipping them out to hospitals, where they would be hooked up to tubes and machines and tended by busy professionals who didn't know them.
"I spent a lot of nights with them, reading to them, singing to them, sitting with them" in their final hours, Baldwin-Branch recalled.
At Gateway Hospice she was frequently tapped to train other nurses and staff.
Baldwin-Branch increasingly became aware that while heavily medicated patients might lose their sense of what was taking place. And family members new to the process had to grapple with the signs of imminent death and how to navigate their feelings.
She would show up at a home, check the patient's medications and vital signs, then focus on how the relatives were doing. "Most would instinctively say they were fine, and I knew how to say, 'OK, that's B.S. -- how are you really?' "
Among the potholes on Baldwin-Branch 's journey this year, aside from realizing that her cancer had returned and was inoperable, was navigating resistance from some of those she most wanted to confront her mortality.
Baldwin-Branch was part of a large, close-knit family. Beside her three adult children, she had seven grandchildren, two surviving siblings, many nieces and nephews, plus their spouses and children.
At a family gathering over Easter, her nephew John Salamacha's wife, Karen, remembered being in denial of her own mother's impending death from Lou Gehrig's disease until Baldwin-Branch advised her it was time to adjust her expectations.
"You did it in a very kind way, but it was what I needed to hear," she told Baldwin-Branch with tears in her eyes.
It frustrated Baldwin-Branch that while people she barely knew praised her blog and insights from her journey, her sister, Judy Salamacha, and others in the family largely ignored it.
Their brother Larry, visiting from New Jersey, was flummoxed by his sister's comfort discussing her demise: "I have trouble comprehending it, Joan. If it were me, I might react in rage or collapse in a pity party."
Baldwin-Branch's approach had plenty of support, however. Her older daughter Jeanne, who lives in West Palm Beach, Fla., circulated the blog among friends. "They say how amazing it is, how sad it is, how awesome it is, because everyone has been touched by cancer," said Jeanne, herself a cancer survivor.
"As the pains increase, so do the 'I'm going to die soon' thoughts. No two days are the same."
-- Posting on “meandcancer” blog, April 30, 2014
In March, faced with the prospect of extensive new surgery with limited benefits (see sidebar), Baldwin-Branch decided against the operation.
She chose now to enter hospice care herself, and her one-story rental home beneath hilltop radio towers became crowded with family coming in and out, Gateway Hospice staff, and other relatives and friends.
Socializing helped her temporarily forget the pain, although her morphine doses increased, making her wobbly physically and sometimes confused. Before that happened, she began planning for her funeral. She wrote out her own eulogy to be read, in which she sang the praises of every close family member, for every mourner at St. Cyril of Alexandria Church to hear.
"I feel like I am half in and half out. ... I have become blasé. I must live in the now and be satisfied with that alone. ... Meanwhile, I am chugging along at the speed my body wants me to go."
-- Final “meandcancer” blog posting, May 1, 2014
Her Unexpected Panic
Unexpectedly, on May 16, Baldwin-Branch found herself in a panic.
She called her friend, Mary Tobin, and in tears begged her to come visit, because she was certain she was going to die that day. Suddenly, she was very frightened--or at least, was now willing to show it. Her siblings, children and hospice friends converged.
Out of Baldwin-Branch 's earshot, on the front porch, Tobin, who owns Gateway Hospice, said that when her friend called that morning, "She implied she was feeling what she had never allowed herself to feel before. I think she's now seeing the finality, the 'Oh, my God, is this really happening' part of it."
Baldwin-Branch didn’t experience a good day thereafter. Now she required heavy sedation, confining her to bed, mostly to sleep to avoid pain.
"She spent so much time in the business of thinking it was her job to get everyone ready to lose her, that she didn't take time to think about what it would mean for her to lose everyone," said Gateway Hospice social worker Candy Pulaski, while sitting with Baldwin-Branch’s daughter Jeanne on May 20.
Baldwin-Branch would die in that bedroom three days later--32 days after she told one of her nurses that she expected she had about a month more to live.
Baldwin-Branch always said she had learned there were four essential things to keep in mind when people close to you are dying: "Provide forgiveness. Ask for forgiveness. Say 'I love you.' Say 'Goodbye.' ... Those are very hard things to say."
She also said the clearest thing shared among the hundreds of people she accompanied through the experience of dying was that they wanted to leave a legacy.
With her unusually open approach over the course of months, Baldwin-Branch gave many who cared for her a chance for final communication that other loved ones are often denied. When her journey ended, with her sister and a hospice nurse at her side, a legacy survived of influencing others to try to approach their final days as openly.
This article by Gary Rotstein is adapted from a longer version that appeared in the Pittsburgh Post-Gazette with support from the MetLife Journalists in Aging Fellowship, sponsored by New America Media (NAM) and the Gerontological Society of America. Articles with multicultural perspective on this topic at posted on NAM’s special website, Palliative and Hospice Care.