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“We’re trying to spend as much time together as we can,” says Willy Weber. He and his wife, Gwen, see every day as a blessing. Photo by Adam Ewing
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Dr. Thomas J. Smith visits with (from left) Keonte Walker, 16; Jeremiah Walker, 8; and Keona Sydnor, 12; in Massey’s palliative care unit, where the children’s mother, Lavonda Walker, was being treated. Photo by Jay Paul
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Smith checks patient Janet Mikionis’ ankle. Mikionis’ breast cancer is in remission, but she is experiencing severe nerve pain. Photo by Jay Paul
‘‘I would be dead if the palliative care unit had not figured out how to manage my pain," 58-year-old Willy Weber says in a solemn tone, glancing away and leaning his frail form back in his chair on the screened porch of his New Kent County home.
As he looks out over his wooded yard, where the tips of the leaves are beginning to change color, Weber recalls his 4 1/2 years of cancer treatment. In April, that journey brought him to the palliative care unit at the VCU Massey Cancer Center.
His cancer is incurable; he no longer receives treatments to slow its spread. In palliative care, Weber explains, "They are not trying to treat your disease, but your pain."
Weber knows that he will die from his illness. He doesn't know when. But he believes palliative care has lengthened his life. "It was like a miracle," he says, with conviction. "A miracle."
Palliative care, a fairly new field that treats the symptoms of serious illnesses, is one of the fastest growing medical specialties in the United States — but also one of the most misunderstood, says Patrick Coyne, clinical director of the Thomas Palliative Care Program at Massey.
From 2000 to 2008, the number of U.S. hospitals that have palliative-care programs more than doubled. As of 2008, about 60 percent of the hospitals with 50 or more beds offered palliative care, up from 25 percent eight years earlier, according to the American Hospital Association's annual surveys and the Center to Advance Palliative Care's registry.
As the number of older Americans grows — the Census Bureau estimates that by 2050, 88.5 million Americans will be 65 or older, more than double the number projected for 2010 — end-of-life care "is going to become a bigger challenge," Coyne says.
Still, palliative treatment and hospice care — the latter is given when a person is close to death — are terms that many patients, and some doctors, are not even willing to discuss.
"People may think that hospice and palliative care leads to earlier death when all — literally all — evidence suggests exactly the opposite," says Dr. Thomas J. Smith, medical director of Massey's palliative-care program. "When you openly address issues and relieve people's symptoms, lo and behold, they live longer."
Smith says a 2008 study published by the Journal of the American Medical Association reports that about 40 percent of cancer patients broach the subject of dying with their doctors.
Patients and their families often have misconceptions about what palliative care is, physicians say.
"They think that palliative care only comes into the picture when they are on the deathbed, only a few weeks from dying — which is what hospice is," says Dr. Tahira Naviwala, who works in palliative care services at Chippenham and Johnston-Willis hospitals.
Most patients in palliative care are terminally ill, but they can be at any stage in their disease, Naviwala says. The goal is to increase a person's quality and length of life by relieving physical pain. Often, she adds, palliative care is offered alongside a patient's regular treatments. For example, a woman facing breast cancer can cope with chemotherapy much more effectively if her pain is being addressed. At times, Smith says, a cure is reached.
"Our goal is really to meet people early in their diagnosis so they have a really comfortable time and are doing the things they want to do versus stay home because it hurts or they are too short-winded," Coyne says.
Weber was diagnosed with colon cancer in February 2006, after several months of unusual abdominal pain. After his diagnosis, he had surgery at Massey to remove a large segment of his colon.
Gwen Weber, his wife of 37 years, worked at Massey as an oncology nurse for eight years before her husband was diagnosed. She explains that his cancer was Stage 2B, and that his tumor was growing through his colon wall. "I knew it was going to be hard," she says.
For the six months that followed, April to September 2006, he had chemotherapy treatments.
"They didn't find any evidence that it had spread to my lymph nodes," he says, adding that he was told that doctors had seen microscopic evidence of cancer outside the colon. But because it had not spread to his lymph nodes or organs, doctors gave him 2-to-1 odds of being cured. "I went back to life as normal, assuming that I was cured," he says.
Willy had retired from his work as a water treatment operations manager in 2001, but he kept busy doing odd jobs and enjoying activities such as fishing and hunting.
"He is quite the handyman," Gwen says, glancing at her husband with a warm smile. Willy adds that on the weekends, the couple could often be found camping at places such as James River State Park in Buckingham County.
But in September 2009, Willy went in for his routine three-month checkup and was told that his tumor-marker blood levels had risen, which indicated activity, Gwen explains. After further testing, the VCU specialists found tumors throughout his body.
"I wasn't surprised because I had already been having unusual pains," Willy says, looking away. "Everybody knew it was incurable this time."
After a CT scan, Willy was told that cancer had reappeared in his pelvic area, and tumors were in both of his lungs. "[I was told] the best I would get was a year."
The couple went through a grieving period. Willy and Gwen say they went home and spent about four weeks adapting to the news.
"I just remember crying every day," Gwen says. "It takes you a little while to get to the point to say ‘OK, we have got to come up with a plan and move forward.' "
In October 2009, Willy decided to give chemotherapy another try. He received a combination of three chemo drugs. These drugs, Gwen says, were not expected to cure the cancer but rather to slow its growth. With a pained expression, Willy explains that the next few months were extremely challenging. With each treatment came a slew of side effects, including vomiting, weakness and exhaustion.
And even so — "there was no evidence they worked," Willy says. By March, his doctors decided to stop the treatments.
The next few months, Willy felt no better.
"I was in constant pain," he says, adding that the word "severe" is an understatement for what he experienced. "We never got on top of the pain."
It Takes a Team
Caring for people with terminal illnesses involves a team of doctors, Coyne says. At Massey, this means that every day the palliative care unit is buzzing with social workers, a chaplain, doctors, nurses and specialists from all floors of the hospital. This interdisciplinary approach is to ensure care for all of a patient's needs: mental, emotional, spiritual and physical.
"We may talk to orthopedics about stabilizing an impending fracture, we talk to [gastrointestinal] medicine to get them to do a [nerve] block," Coyne says. "Nobody can do this in a silo."
Massey's team brainstorms creative solutions to alleviate patients' pain, Gwen says; Willy was no exception.
After stopping chemotherapy treatments, Willy stayed at Massey's palliative care unit for 17 consecutive days because his tumor had grown so large that it was obstructing his bowel. A surgical oncologist performed a colostomy, which Willy says relieved much of his pain. Then, wound-care specialists came from other units to teach the Webers how to manage the colostomy.
Willy returned home, but recurring pain forced him back to Massey for what's called an epidural trial, in which a semi-permanent catheter was inserted. The catheter should have remained in place for at least several weeks, providing constant pain relief. Instead, it worked itself out within three days, and Willy was readmitted to the hospital.
"We would make a little progress and then [the pain] would come back," Gwen says, adding with a sigh, "and here I am a nurse." She explains that after working as an oncology nurse, she had been on staff in Massey's palliative care unit from 2000 to 2005. Despite her experience in the field, at times there was nothing she could do to ease her husband's suffering.
When Willy returned to the hospital, a surgeon implanted a pain pump under his skin. The pump offers a constant drip of painkiller to his spine.
But he says he was still in a great deal of pain until one day Bart Bob, the nurse practitioner who took care of him during most of his visits to the palliative unit, suggested Willy try a nerve block, which uses an injection of alcohol to numb a nerve center. On July 16, a radiology specialist performed the first of two nerve blocks. Willy says that when he woke up, his pain was gone, and he and Gwen dissolved in tears.
Willy says the relief he felt was miraculous. He was able to return home and pick up a more normal pace than he had in months. He began to do housework again and was able to spend more time visiting close relatives.
Coyne asserts that Massey's palliative care program is on the cutting edge for pain management. "We are doing things that no one else is doing in the country."
These initiatives include Massey's current study of a machine that is supposed to help cancer patients who experience peripheral neuropathy, a disorder of the nerves that causes pain. So far, Coyne says, the results from the study show positive results. The thought is that the machine causes the pain nerves to stop firing, he says. Massey is also the first U.S. testing site for Scrambler Therapy, which relieves pain without using
drugs, Smith says. Instead, the process involves small electrical impulses through the skin.
Closer to Home
In end-of-life care, Naviwala says, the focus must not be on the disease, but on what she calls a holistic approach. "Holistic means looking at the patients as a whole … also trying to understand who is this person behind the patient," she says.
At Massey, this kind of thinking led to the creation of a homey atmosphere in its 11-bed palliative care unit, which includes a family room with a full-service kitchen, where volunteers prepare freshly baked goods on a daily basis. Once during one of Willy's stays, volunteers made him a milk shake of vanilla ice cream and orange sherbet.
"They treat you more on a personal level," Willy says. "It is like a family."
Coyne says volunteers read to patients and take patients to an on-site garden every day.
"There are no visiting hours," he says. "If [family members] want to spend the night, great; if they want to bring their dog in, great. It's as close to home as you can make a hospital."
On the walls of the family room, there are handwritten messages and pictures. When 8-year-old Jeremiah Walker of South Boston was in the unit in early November to visit his mother, Lavonda Walker, he noticed the words "love" and "hope" written on the wall, says his aunt, Brittney Walker. Lavonda died in the unit on Nov. 6, after a short struggle with cancer. But she was able to talk individually with each of her three children and offer them reassuring words, Brittney says. "Now, when Jeremiah draws pictures of his mother, he always puts the words ‘love' and ‘hope' in the picture," Brittney says. He also makes sure to include Lavonda's favorite color, purple.
An Expanding Specialty
Coyne thinks back to 1994, when he first recognized the need for a palliative care program. At the time, his position involved managing cancer patients' pain, something he says he's still very passionate about.
"I kept seeing people who had severe pain but were also short of breath or depressed and didn't know what life was bringing them," Coyne says. "Just managing pain was not enough."
That year, Coyne says, he and Smith traveled to Tanzania, where they taught a seminar on managing cancer pain. Their return trip was delayed after some confusion with their passports, so the physicians had time to brainstorm. "We figured if we can be halfway around the world teaching about palliative care and pain and symptom management, let's start a formal program when we get home, if we get home," Smith says with a laugh.
Back in Richmond, Coyne and Smith developed a plan on paper — something that was not realized until the opening of the unit in 2000.
At the time the program was launched, palliative care was rarely recognized as a medical need, and it was not distinguished from hospice care.
"There was not an awareness of palliative care in the general public as well as in the medical community," Naviwala says. "There was no concept of what suffering is, really."
In the last decade, she says, medical schools have expanded their curriculum to include courses in palliative care.
HCA began offering palliative care in 2007, and currently offers inpatient and outpatient care with consultations involving a specialized team.
Bon Secours Richmond Health System added palliative care services in 2005. Three teams including physicans, nurse practitioners and social workers provide pain and symptom management at all four area facilities.
VCU Medical Center has been at the forefront of this movement. Massey physicians have trained staffers at more than 150 medical institutions in how to provide palliative care in hospitals, right alongside oncology, Smith says. Also, he adds, the European Society of Medical Oncology recently voted Massey's program one of the international leaders in palliative care.
"What I am envisioning … five to 10 years from now is that it will be an integral part of the health care system," Naviwala says of palliative care. "It's a little bit outside the box right now."
The Role of Hospice
When a patient's condition continues to decline despite caregivers' efforts to ease pain and lengthen the patient's life, hospice care is the next step. Hospice, which Smith explains began in England, is an effort to "de-medicalize the dying process." It is best done at home, he says.
Most patients in hospice care live no longer than six months, says Madelyn Williams, director of hospice operations for Bon Secours. The health system has a specialized team on call for hospice patients around the clock, but if possible, family members are taught how to give medications and make the patient comfortable. "We believe that if we can give the patient and family member the skills that they [need], it is much more empowering for the family member after the person has died," she says. "They know they provided that care."
But there are cases when hospice care cannot be done well at home, Williams adds, and hospital beds for hospice patients are limited. St. Mary's Hospital has just four beds dedicated to hospice patients, she says. HCA's Retreat Doctors' Hospital also houses the Hospice of Virginia's 15-bed hospice unit that's open to patients from any area health care system.
Some medical professionals are pushing for the development of a local hospice house. Dr. Kenneth Olshansky, who was a plastic surgeon at St. Mary's for 33 years, is leading that effort.
"Not all people are able to have a quality end-of-life experience at home," Olshansky says, adding that a hospice house would "try to maximize that end-of-life experience by having a facility like this where people can die in dignity and not worry about who will take care of [them] or their children."
About a year and a half ago, Bon Secours Virginia CEO Peter Bernard set a goal of building a hospice house that would be open to all health systems, Olshansky says. Olshansky set up a steering committee, and a feasibility test determined that the Richmond area could support a facility with 16 to 24 beds.
"We already knew it could because some communities much smaller than Richmond have a hospice house," Olshansky says, adding that fundraising for the house could begin in early 2011.
Williams says that a hospice house would provide respite care at times when families are too weary to keep caring for a family member at home.
Smith notes that while cancer patients who receive hospice care live about a month longer than those who do not, hospice care is offered very late in the United States. "I think the average person in hospice is in there about 14 days," he says. "A big help would be talking about hospice sooner, not three days before they die."
Helping patients emotionally and spiritually is vital in end-of-life care, Smith says. He affirms the importance of having family meetings where doctors and patients can discuss the goals of care and other issues.
"I think people should ask their doctors what the future holds and if they are going to die of their disease," Smith says. He adds that doctors need to do more listening. "The hardest thing for a physician is to just be quiet and listen and be present with people and share their human experience," he says. "Most doctors want to fix things. The average doctor gives patients 22 seconds before they interrupt."
To help patients in these situations, when doctors deliver news about a ter-minal illness, they often choose to take a staff chaplain or social worker with them.
"Very few people are prepared" for that conversation, says Roxanne Cherry, oncology chaplain at Henrico Doctors' Hospital. "I have to process everyone's reactions to see if they need us to come back." She adds that often a social worker is in the room when difficult conversations happen, helping the team assess whether family members and patients truly understand the diagnosis.
"They're questioning a lot of things," Smith says of the patients. "How will they be remembered? Will they be comfortable as their disease gets worse? Will their family be OK? Are they going to heaven, if that is their belief system?"
Cherry, who has worked in oncology for about 30 years, says the field is a calling that she feels deeply. Cherry lost her husband, Chris Desch, a former oncologist at HCA, in a plane crash in 2006. Since then, she says her views about death and holding out hope to others facing their mortality has changed.
"I used to think it was very important for someone to be with the person when they died," she says, tears filling her eyes. "Chris' death forced me to a new awareness — God is with the dying. Whether or not we are there is irrelevant."
In addition to working with those who are newly diagnosed, she also helps care for longtime cancer patients, those who just learned of recurrences in their conditions — and even survivors.
"I encourage them to trust themselves and their God," she says. "I say, ‘I don't know everything you are experiencing but I am willing to sit right here with you … and walk with you.' "
Coyne adds, "Caring for people that don't have much time really allows for a lot of sacred moments."
‘Like Two Sticks'
Willy and Gwen Weber say they draw strength from each other to persevere and maintain a positive outlook.
Looking at each other, they smile. Gwen says that Massey's staff commented on their relationship. "They said we are like two sticks holding each other together," she says with a laugh, putting her two index fingers together.
She adds that Massey's chaplain was particularly helpful in April, during Willy's 17-day stay at the hospital. Just a few floors above his room, Gwen's father, Vernon Grant, was dying of myelodysplasia, a condition in which bone marrow does not function properly. "I remember [the chaplain] being there for me through that time," she says.
Grant, 79, passed away before Willy was sent home.
Gwen says the couple's focus now is enjoying their time together. In September, they snuck away to Nags Head, N.C., for a few days and they're looking for other opportunities to make memories.
"We are trying to spend as much time together as we can," Willy says.
Fighting back tears, Gwen says, "We are taking one day at a time. … We just see every day as a blessing and are grateful that we have every day."