Life's Journey: A Better End / A hospice nurse's frank approach to end of life
First in an occasional series: North Sider Joan Baldwin-Branch blogged, joked about her battle with ovarian cancer
June 7, 2014 11:24 PM
Joan Baldwin-Branch at her North Side home in January. Ms. Baldwin-Branch, a former hospice nurse, was diagnosed with ovarian cancer in 2012.
While welcoming visitors to her home on Pittsburgh's North Side, an ailing Joan Baldwin-Branch gets some help from son Jay Baldwin (right) and Gateway Hospice aide Melissa LaLonde.
Joan Baldwin-Branch, center, receives comfort from sister Judy Salamacha on the morning of May 16, one week before Joan's death. She had experienced a difficult night of pain and fear and several family members and friends had gathered to offer support. On the right is Gateway Hospice social worker Marcie Brown.
By Gary Rotstein / Pittsburgh Post-Gazette
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 from the North Side spent months blogging about her philosophy of life and death at the same time her pain built from ovarian cancer. She engaged her three children and scores of other relatives and friends in conversations trying to help them understand she was OK with dying, and counseled that they should be, too.
Joan's journey: A caring nurse's final days
As a hospice nurse, Joan Baldwin-Branch spent a lifetime helping people deal wth death. Then she was diagnosed with cancer and was forced to face her own death. (Video by Steve Mellon; 6/8/2014)
Widely admired as an educator since making a midlife decision to become a nurse, Joan was the one coaxing others out of denial of her terminal illness. They were helped by her many jokes about her savings of time and money once she lost her hair during chemotherapy, and about her "loopiness" from reaction to 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 despite that high volume of daily mortality all around us. Death is a difficult subject most prevalent for the elderly living behind walls of institutional settings, though concealing it is hardly ideal for emotional well-being, 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," she said.
Joan 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.
And to many admirers, Joan 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."
Exposed often to death as a critical care nurse and personal care home operator before escorting hundreds of individuals through their final weeks once she entered the hospice field, Joan received her own "whacked by a 2-by-4" message, as she called it, in October 2012.
About this series
Today's installment of "Life's Journey: A Better End" is the first in an occasional series that will focus on end-of-life care and issues. The series has been assisted by a MetLife Journalists in Aging Fellowship, sponsored by New America Media and the Gerontological Society of America.
To offer your own positive or negative experiences relating to end-of-life care, contact Gary Rotstein at 412-263-1255 or at firstname.lastname@example.org.
Her boss and friend at Gateway Hospice, Mary Tobin, compelled her to go to the emergency room to have abdominal pains checked out. In tests that day, what had felt like persistent gas was diagnosed as ovarian cancer. It is one of the most deadly forms of the disease, because it is rarely detected before an advanced stage, which was also the case with Joan.
It came as an initial shock for an ever-busy woman still working in her 70s. She had retired from retirement a few years earlier after realizing she had too much she still wanted to contribute. Now she was told she had the type of terminal illness she had been coaching patients and families through since the late 1990s.
"I went, 'Whoa, where is this coming from?' " she recalled recently in the Observatory Hill home she shared with two grandchildren in their 20s, two cats and a dog, Ralph, who likes to escape out the front door to run through nearby woods.
Joan 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 in her 30s, not when giving most of her money away to others she felt had more need for it than she did.
Joan 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, viewing whatever happens after death as "something on a path that's leading me somewhere," perhaps to a form of reincarnation.
"No matter what happens to you, turn it over" -- and she clasped and twisted 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
Joan wasn't always comfortable with death. As a child, she would skip quickly past a funeral home on the way to school because it gave her the creeps. 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, where deaths were hardly uncommon. More exposure would follow in personal care homes and nursing homes.
She had always been a caring soul -- the one pushing a disabled girl her own age around the neighborhood in a wheelchair when no one else wanted to; bringing needy patients from the hospital into her own home when they were discharged but had no safe place to go.
But something about the dying process itself deeply touched her. In operating personal care homes in the 1980s, she 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," Joan recalled, showing how she would lightly stroke an arm or wrist, reassuring a person that someone beside them cared about them in their final hours.
Joan was working for a nursing home in the 1990s when a nurse in the relatively new hospice field told her she had the skills and empathy meant for caring full time for those who are dying. She became a hospice nurse thereafter, one who was frequently used to train other nurses and staff for Gateway Hospice.
The hospice's owner, Mary Tobin, called Joan a "rippler." Her calm devotion to educating patients and families about what they were going through -- whatever the time and costs involved -- had a ripple effect on everyone else working for the agency.
Joan felt her work was ultimately more important for the loved ones of those dying than for the patients. The patients might be losing their sense of what was taking place while heavily medicated, but family members new to the process had to grapple with the signs of imminent death and how to navigate their feelings about it.
She would show up in the 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?' "
"My family is well aware of how I am feeling as I have been very open and truthful with all. It was important for me to make sure that I was meeting each individual where they were ... and not be pushing them to a place where they cannot internalize or comprehend."
-- From meandcancer blog entry, April 30
Among the potholes on Joan's journey this year, aside from a realization that her cancer had returned in a way deemed inoperable, was navigating resistance from some of those she most wanted to confront her mortality.
She was part of a large, close-knit family of North Siders -- some still around Pittsburgh, some dispersed, including her three adult children. She also has seven grandchildren, two surviving siblings, many nieces and nephews, and the spouses of all of them plus their children, all interconnected.
Many were accustomed to looking up to her as the wise "rock" of the family, whom you went to for help in a jam. She was known to care for others before herself, and anyone could count on straight, nonjudgmental talk from Joan about an illness or anything else.
At a family gathering in Brighton Heights 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 Joan 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 Joan with teary eyes at the gathering in the home of Joan's sister, Judy Salamacha.
The sisters are close, but Judy had little interest in discussing Joan's terminal illness from the day she was diagnosed, other than holding out hope she would get better -- unrealistically, in Joan's eyes.
It frustrated Joan that even though she heard of people she barely knew praising the blog she had begun in February to share insights from her journey, Judy and some others in the family largely ignored it.
"It makes me sad," Judy said with a wave of her hand, as though dismissing the cancer. "If I don't think about it, it's not there."
Joan's brother Larry, visiting from New Jersey, was simply 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. ... So I've avoided it. I think it sucks. That sums it up for me."
Joan's approach also 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.
Joan would gather occasionally with friends from the 1956 graduating class of Perry High School. When she let them know casually one day that she was battling advanced cancer, they were astonished, said one of the friends, Rose Marie Mascari of Ross.
"Everyone got quiet. We were all shook up, and I said, 'Oh my God, Joan, I'm so sorry,' and she was cool as a cucumber, so relaxed about it. She tells it the way it is -- she doesn't want anyone feeling sorry for her -- and says, 'That's just how it is.' "
"As the pains increase so do the 'I'm going to die soon' thoughts. No two days are the same. As each day ends and another begins, I know that I am one day closer to dying."
-- Posting on meandcancer blog, April 30
Joan'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 that her oncologist said could add a year to a life span that might last just a few months 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 what 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's admission, during which difficulty with breathing as well as the pain convinced her that her body wasn't strong enough to withstand the extensive surgery.
She made the decision upon hospital discharge March 20 to forgo any additional cancer treatment and begin receiving hospice care at home, with a focus on comfort and pain management. She had been told by a doctor that she had the pain threshold of a Navy SEAL, but even she felt paralyzed at times now by pain she said could be worse than childbirth.
Visits would come in ensuing weeks from her three children -- daughters Jeanne and Judy, who both live in Florida, and son Jay in Alaska.
The one-story rental home beneath hilltop radio towers became crowded at times. There were the two grandchildren living there, Ryan and Lauren; her visiting children, in and out; Gateway Hospice nurses and aides and social workers; and other relatives and friends and well-wishers, plus a newspaper reporter and videographer Joan had reached out to about her journey.
A serial hugger who liked to be surrounded and in control, Joan appreciated the company. Socializing helped her temporarily forget the pain, though her morphine doses had to keep increasing, which made her wobbly physically and sometimes confused. Before that happened, she began planning for her funeral. She wrote out her own eulogy to be read there, in which she sang the praises of every close family member, for every mourner at St. Cyril of Alexandria Church to hear.
Her oncologist, UPMC's Robert Edwards, said Joan had made a pragmatic -- but still relatively rare -- decision to discontinue treatment based on weighing all the options and consequences, while many patients focus only on the potential benefits of additional surgery, chemotherapy and radiation.
"It was unusual how frank she was in her questions -- they were brutally honest," he said. "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 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."
"I feel like I am half in and half out. ... I have become blase. 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
Something unexpected happened the morning of May 16 in the home high atop the city, where Joan enjoyed gazing out windows and seeing a vast horizon for miles to the west. She had begun feeling too frail and cloudy in recent weeks to continue her blog, just days after talking in relaxed manner on her porch about the blessing of the time she had been allotted.
But after awakening three Fridays ago, she was 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. She desperately wanted other close family and friends around as well. Suddenly, she was very frightened -- or at least, was now willing to show it.
Her siblings, children and hospice friends converged that Friday, all trying to convince her she was loved and would be fine. The tables had shifted. She had reversed the Kubler-Ross stages of the dying process by evolving from early acceptance to late anger.
Out of Joan's earshot, on the front porch, Ms. Tobin said of that morning's call from Joan, "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."
Joan never experienced a good day thereafter. She had been able to take pleasure during the disease previously from sharing time with those she loved. Now she required heavy sedation, confining her to bed, mostly to sleep to avoid pain. That followed another morning when she had clutched daughter Jeanne hysterically and wailed that she wasn't ready to die.
She couldn't describe the change in her attitude herself, due to how medicated she was, but others tried.
"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, sitting with Jeanne in her mother's living room on May 20, while Joan was lying in bed.
Joan would die in that bedroom three days later. It was 32 days after she told one of her nurses that she expected she had about a month more to live.
Joan 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, she gave many who cared for her a chance for final communication that other loved ones are often denied. And when Joan's 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.
Gary Rotstein: email@example.com or 412-263-1255.
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