The Palliative Care team at Mass General helps patients and their families understand the long-range prognosis of serious and life-threatening diseases so they can seize the moments when they are well.

Seizing the Moment

12/Jan/2012

One morning Jim Langmeyer felt a terrible sensation that began in his back, radiated up his shoulders and shot through his ribcage. The severity had been building over a few days, but Jim had grown accustomed to living with cancer pain. He waited for it to break.

Jim Langmeyer and Simone Rinaldi

Jim Langmeyer and Simone Rinaldi, a nurse practitioner in Palliative Care at Mass General
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Instead, on that day last May the pain hit a crescendo like he had never before felt. The retired Merchant Marine could focus on nothing else. Breathing and speaking took effort. He didn’t have the strength to rise from the brown leather armchair in his living room. The “man’s man” as his father-in-law once called him, could no longer move. Tears streamed down his cheeks.

Franny Langmeyer felt helpless to ease the suffering of her husband, who was already taking multiple medications to manage the pain caused by the esophageal cancer that had spread throughout his body. She decided to call someone they had both come to trust. She prayed hard that Simone Rinaldi would pick up the phone.

Ms. Rinaldi is a nurse practitioner in the Palliative Care Program at Massachusetts General Hospital. The program is one of the oldest, largest and most sophisticated efforts of its kind in the country.

The role of Palliative Care at Mass General is to prepare patients for what to expect when they are facing serious and life-threatening illnesses. Members of the Palliative Care team offer guidance to patients and families as they consider treatment options, helping them understand the balance of burdens and benefits with each intervention. The goal is to assist patients and families in making decisions that fit their values and goals. Mass General is a leader in a nationwide movement to encourage doctors and nurses to talk openly and frequently about these difficult issues.

Palliative care programs are growing and the need is great with the aging American population. About 63 percent of hospitals with more than 50 beds have a palliative care team, entities that were almost unheard of a decade ago, according to the Center to Advance Palliative Care, an advocacy group.

Like Jim Langmeyer, most of the patients involved at Mass General have cancer that has spread throughout their bodies. Others are dealing with advanced heart failure, lung disease and neurodegenerative conditions, such as amyotrophic lateral sclerosis.

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Palliative care does not mean patients are giving up on fighting their disease, says Vicki Jackson, MD, MPH, chief of Palliative Care at Mass General. The service helps patients manage symptoms so they feel better and can be used while patients are having treatments to cure or slow their disease. A groundbreaking study, co-authored by Jim’s oncologist Jennifer Temel, MD, and Dr. Jackson, found patients with metastatic non-small-cell lung cancer assigned to early palliative care in addition to standard treatment had a better quality of life than patients assigned only to standard care.

Those in the early palliative care group lived an average of 11.6 months, compared to patients who received only standard care, who lived nine months. Palliative care patients lived longer and their rates of depression were lower — despite that many chose not to have aggressive end-of-life care.

Two additional months is precious, considering this type of lung cancer has a survival outlook of less than a year following diagnosis. Mass General has another grant to investigate why researchers saw the results that they did.

Dr. Jackson says it is a privilege to help families as they courageously struggle with difficult decisions. “I think people are realizing that palliative care is really just about living as well as you can for as long you can,” she says, “And that’s what most people want.”

The lure of the sea

During his boyhood summers, Jim Langmeyer and his grandfather gazed at ships sliding into the Port of Boston.

Jim’s grandfather shared tales of the high seas. He had served as a captain in the Navy and worked on Boston’s fireboats. Once, his grandfather even brought home an alligator, which he kept in a bathtub in his cellar.

Longing for adventure, Jim followed in his grandfather’s footsteps. But his heart also found an anchor in Boston.

When he was in his early 20s and home on break from the Maine Maritime Academy, one of his buddies convinced him to go to Killington, Vt., promising there would be lots of girls.

Franny was one of those girls. A few years later, Jim and Franny married. During their honeymoon, Franny was diagnosed with multiple sclerosis. As the years passed, she would have two hip bones, a shoulder and a knee replaced at Mass General. But through it all, Franny refused to let chronic pain prevent the couple from living the life they wanted.

Franny Langmeyer and Holly Sullivan

Jim Langmeyer's wife, Franny Langmeyer (left) and daughter, Holly Sullivan, laugh during a lighter moment at one of Jim's many medical appointments.

They had a daughter, Holly. Jim continued his career. As a chief engineer, he oversaw the mechanical and electrical operations on 1,000-foot ships delivering supplies in the early 1990s for the Desert Storm and Desert Shield military operations in Iraq. He also voyaged to China, Japan, Korea, Northern Europe and Scandinavia.

“All I got was the stories,” Franny says with a laugh. She held down the home front in Weymouth. In their living room, they have shelves filled with mementos from faraway places — white vases with Irish clovers, wooden fans and ivory carvings.

In September 2008, after 35 years of service, Jim retired. He was in his mid-50s and healthy. He and Franny wanted to travel to places they couldn’t go when he was working and they had a young daughter at home. They dreamed about relaxing at their beach house on Cape Cod and playing with their two, young grandchildren. He planned to teach for the Merchant Marine.

Then, life brought the unexpected.

Jim began having throat pain and difficulty swallowing. A few months into his retirement, Mass General physicians diagnosed him with cancer. They removed a tumor from his esophagus, the long muscular tube that carries food to the stomach. For a time, Jim felt better and began teaching at the Marine Engineers School in eastern Maryland.

But by the spring of 2010, the cancer had metastasized and spread to his spine. Jim’s oncologist, Jennifer Temel, MD, referred the couple to the hospital’s Palliative Care Program. They had never heard of palliative care, but were willing to give it a try.

Vicki Jackson, MD

Vicki Jackson, MD, chief of Palliative Care at Mass General, says it's a privilege to help families as they struggle with difficult decisions.

Mass General’s Palliative Care program, housed in the Department of Medicine, consists of 10 physicians, five nurse practitioners, a social worker, administrators and a chaplain who specializes in cancer. Ms. Rinaldi sees Jim for outpatient visits and Dr. Jackson checks in on him when he is in the hospital. Both Ms. Rinaldi and Dr. Jackson coordinate with Jim’s oncologist and surgeons. Palliative Care team members help patients manage disease symptoms such as pain, nausea and shortness of breath. They also can make referrals for rehabilitation services and home-health support.

Ms. Rinaldi and other team members help patients and families understand the long-range prognosis of the disease so they can seize the moments when they are well — like the Langmeyers did last year when they took a Disney cruise with their grandchildren.

She tells her patients to hope for the best — whatever that might be — a cure, for the disease to slow its pace, or for a few more days with loved ones. But she also encourages them to consider what they might want should time become short.

Such advice springs from experience. She recalls that physicians did not discuss prognosis or goals of care with her mother before she died of lung cancer when Ms. Rinaldi was 14. The experience of not having her mother at home near the end or being able to say goodbye led Ms. Rinaldi to seek a career in palliative care so she could help patients and families plan their final weeks and months.

Getting to know the Langmeyers has given her lessons in resiliency. “They’re teaching me about grace, how to be graceful in the face of significant adversity,” Ms. Rinaldi says. “Given what he has faced, you might expect a certain kind of bitterness.”

Managing with a life-threatening disease

Friends have prayed for Jim and Franny and the couple has leaned heavily on their faith and church to ease their fears.

Still, they have had their moments.

“One night, I said, ‘This is so not fair,’ ” Franny recalls. “And within the same 24-hour period, Jim said, ‘This is just not fair.’ And we both said, ‘Yeah, who said it was going to be?’ ”

Jim had never smoked, or had acid reflux, two common risk factors for esophageal cancer. They wondered if exposure to toxins while working on large shipping vessels early in his career might have been a contributing cause. Not that knowing would change the situation. “It doesn’t matter much,” Franny says. “It is what it is.”

This past May, Jim experienced the severe bout of pain that bound him to his armchair and prompted Franny to call Ms. Rinaldi. Through the phone line, Ms. Rinaldi sensed the strain in Franny’s voice. Then, she spoke with Jim. She told him how to adjust his pain medication to ease his suffering.

Jim Langmeyer and Simone Rinaldi

Jim Langmeyer and Simone Rinaldi

A few hours later, Jim was able to rise from his armchair and could walk.

Franny left a message at Mass General’s call center for Ms. Rinaldi. “No need to call back. Just wanted to say ‘Thank you for giving me my husband back.’ ”

But the respite was all too brief. In July, an ambulance brought Jim to Mass General after he lost the use of his legs and collapsed in his house. Surgeons removed a tumor that had wrapped itself around his spinal cord. They rebuilt his spine with a metal rod. Recovery seemed to be going well, but additional setbacks occurred while he was in a rehabilitation facility.

One August day, the Langmeyers and their daughter, Holly Sullivan, now 31, and with children of her own, came to Mass General for Jim’s multiple medical appointments. Jim was dressed casually, khaki shorts, a polo shirt and sneakers. He had gained 15 pounds, a good sign, and was making progress at rehabilitation.

But he eagerly anticipated his release from rehabilitation. He longed to be home or on the Cape, to spend summer days with his family, his Goldendoodle, Nicholas, and in the garden his neighbors had planted for him. He missed his Harley-Davidson, too.

During the family’s meeting with Ms. Rinaldi, Jim sat upright in the exam chair, leaning forward to listen to Ms. Rinaldi, his walker placed in front of him. His knees were almost touching Ms. Rinaldi’s as she flipped through pages detailing Jim’s medications. For a time, they talked about reducing his regimen.

“How are your spirits, given all you’ve been through the past couple of months?” Ms. Rinaldi asked gently.

“Good. I was down a little, but through all of it, I’ve still had faith,” Mr. Langmeyer said in an even tone. Then, his voice wavered, ever-so-slightly. “I fully expect to walk again.”

After Ms. Rinaldi left, Dr. Temel, the oncologist, entered the exam room. The conversation turned to whether another scan was needed to assess the cancer.

Dr. Temel explained that chemotherapy was not a good option at this time. She said the goal should be for Jim to feel well enough to leave the inpatient rehabilitation center and return home. “Of course you’re concerned about the cancer,” she said. “The reality is that nobody knows when that cancer is going to grow and cause problems again.”

The family fell silent. Holly asked her father if he was OK with Dr. Temel’s recommendation. Jim nodded.

Accepting what you cannot change

Jim left the rehabilitation facility just before Labor Day. At home, he took 14 steps without his walker. He thought he would regain his strength. But two weeks later, the excruciating pain returned. The tumor had re-wrapped itself around his spine. He could no longer stand.

As the autumn days passed, Jim used a wheelchair to maneuver around the first floor of his home. Friends dropped by to help with chores, keep up his spirits and get him to the second floor to shower. They also helped when Franny had to be hospitalized for several days for a condition related to her MS. Jim had always cared for Franny. “I’m a little anxious about my wife and what will come when I’m not here,” he said while she was hospitalized. “But she has a strong faith also. She’ll carry through. She will. She has to.”

He found that learning to accept help from friends had lessened the burden of cancer. “I’ve always been a very independent person and done everything for myself,” he said. “Now, I’m in a very humble position where I have to rely on other people.”

Mr. Langmeyer

Jim Langmeyer reads to his granddaughter, Caroline Sullivan, at his Weymouth home. One of Jim's goals for his treatment is to be able to spend as much time as possible with family.

Having Ms. Rinaldi, Dr. Temel and Dr. Jackson guide him through his illness has also helped. “They share with you your experience of pain rather than just treat it,” he said. “That has meant a lot to me, for piece of mind for me and my family.”

The team continued to adjust his medications so he could cope with the pain. Mr. Langmeyer felt alert and comfortable on most days. He held out hope for a miracle that would let him walk again, but was at peace with his fate.

He just wanted to spend as much time as possible with Franny, his daughter and her husband and his two grandchildren. During one of their visits, 3-year-old James trotted around the house with a pirate sword and treasure map. Caroline handed her “Papa” a book to read to her.

One Saturday in early October when temperatures in the Boston area climbed to the mid-80s, Jim and some family and friends drove to Cape Cod. The retired Merchant Marine yearned for one more day near his ocean.

His friends lifted him in his wheelchair and carried him to the beach. One friend, a youth pastor, raised a half shell saved from the Langmeyers’ honeymoon in the Bahamas over Jim’s head. Cold ocean water spilled out. For Jim, the moment symbolized a recommitment of his faith in God.

As the hours passed, there was laughter among those gathered on the beach. They watched the sun drop into water — just as Jim had many an evening while sailing the high seas. It was a perfect day.

Editors Note: Jim Langmeyer passed away Dec. 6, 2011, in the comfort of his home in Weymouth, Mass., and while surrounded by his loving family. Holly Sullivan, Mr. Langmeyer’s daughter, praised the efforts of his caregivers at Mass General, including Jennifer Temel, MD, Vicki Jackson, MD, MPH and Simone Rinaldi, a nurse practitioner. “Throughout my dad’s illness and in his final days,” she said, “Dr. Temel, Dr. Jackson and Simone not only supplied world-class medical treatment and advice but also emotional support and friendship, which was a tremendous comfort to my dad and our family.”