KEEP US INFORMED:
Imagine that you or a loved one has been diagnosed with a serious illness, such as Alzheimer's disease, cancer, organ failure, or HIV infection. Unfortunately, this doesn't require a lot of imagination; the experience and its practical and emotional consequences are part of almost every person's life. But if you are fortunate enough to encounter a capable and empathetic clinical social worker, she or he can make the experience easier by providing psychosocial support and access to community resources.
"On the practical side, many patients and their families are struggling to make ends meet," observes Ashley Varner '94, who until recently worked with patients with cancers of the brain and gastrointestinal system at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital, Baltimore. "They may be from out-of-state, and have to pay for a hotel, meals at restaurants, and transportation. A single dose of a new drug may cost $10,000, and they are often negotiating with their health insurance companies.
"Then there is the crossover to the emotional side," continues Varner, who is now senior director, Caregiver Programs, for The Wellness Community. "A patient may be out of work and money. She or he may have been the breadwinner and suddenly lost that role due to illness, and now has to ask for so-called handouts. There are kids at home. Many patients who have a brain tumor also experience cognitive deficits. And they begin to wonder, 'Who am I?'"
Sharing the Load
As a clinical social worker, Varner applies the resources available in the health-care system and community, as well as her clinical skills, to lighten the practical and emotional burdens for patients and their families. "We don't always have solutions to these problems, but we know of a lot of resources. We also have more energy to 'bulldog' some of those things than our clients, many of whom are getting chemotherapy. And we know the health system."
Varner says to her clients, "We're going to do this together. This is your journey, but I am going to walk right alongside you and share the load."
Along with Massachusetts General Hospital (MGH), Johns Hopkins is a pioneer in the field of clinical social work. In 1907, physician Richard Cabot and Ida Cannon, a nurse and social worker, founded a program at MGH after Cabot observed the relationship between disease and poverty. Johns Hopkins Hospital also established a social-services department in 1907 as a result of the initiatives of William Osler, the first chief of medicine, who recognized the importance of treating all of the patient's needs—physical, emotional, and social. The Johns Hopkins Hospital Web site shows a photo of the "Social Services Car," which was used in the 1920s to shuttle needy patients to and from the hospital.
Over the last century, the clinical social work profession in hospitals has grown and shrunk in response to funding. "A few years ago, medical social work was in a bit of a crisis across the country, and many big hospitals were pink-slipping their social workers to save money," Varner observes. "They have since rehired many of them, realizing the need for clinical social work in the medical setting." And the ranks of social workers are expected to swell: the Bureau of Labor Statistics counted 124,000 medical and public-health social workers in the United States in 2006, and projected a 24-percent increase by 2016.
In the field of organ and tissue transplantation, a successful outcome depends on a transplant patient's ability to manage a detailed pre- and post-surgical medical regimen, and clinical social workers are called upon to help assess their capabilities to do so. Transplant social workers are part of an interdisciplinary team, including a transplant surgeon, other medical specialists, case manager, financial coordinator, and nutritionist, who determine whether or not a patient is an appropriate candidate for transplantation.
"A lot has to do with the patient's ability to manage a complex medication regimen," explains Mary Fisher '00, a kidney-transplant social worker at the University of Southern California University Hospital, Los Angeles. "After a kidney transplant, patients can be put on any number of medications in addition to what they are already taking, including immunosuppressant medications. The regimen can be quite complicated—for example, for patients with diabetes who are on insulin. We look at social support at home—whether or not someone can help care for the patient for several weeks after transplant—and the availability of transportation for the extensive follow-up visits to our outpatient clinic."
The social workers on the team also engage families in discussions of the transplant process and requirements for follow-up care. "Sometimes the patient is not really interested in a transplant, but has family pressure," Fisher says, "or the patient thinks it's a good idea and the family does not."
In a few instances, Fisher has had to recommend against transplant based on the patient's psychosocial history and current living situation. "There have been a few patients who did not have the level of family support that they needed to be able to manage the follow-up care and the medical regimen," she says. "In other cases, a long-term history of mental illness has raised concern over the interaction of their current drugs and the steroids they will need to take post-transplant. We also see patients in the early stages of dementia, which raises concerns about compliance with the medical regimen and the possibility of graft rejection."
The first successful kidney transplant was performed 54 years ago at Peter Bent Brigham Hospital (now Brigham and Women's Hospital), when Joseph Murray led the surgical team that performed a living-donor transplant between identical twins, according to United Network for Organ Sharing (UNOS). UNOS is a nonprofit scientific and educational organization that administers the United States' only Organ Procurement and Transplantation Network, which was established by the U.S. Congress in 1984.
"The wait-list time for a cadaveric kidney in California averages seven years," Fisher says. "However, if a patient has someone identified as a living donor who is a good match and a good candidate, then the process can move quickly."
Fisher recalls a woman in her early 20s who received a kidney from an older sister. She had been diagnosed at a fairly young age with end-stage renal disease, and her sister was a good match. After the transplant, they lived at home with family, who cared for them during recovery.
Fisher counseled the recipient and a colleague counseled the donor, which is standard practice to avoid conflicts of interest. "Usually recipients have initial concerns about the health of the family member who is going to donate," she says, "and we have to work through that process. Some donors and recipients feel it brings them closer together, and others see it as a natural extension of the family bond. When a donor is a family member, she or he is generally very eager to do whatever they can to ensure and improve that person's health."
The initial period after transplant can be a very stressful time for the patient, and Fisher continues to follow their progress as long as they need her. "They tend to be watching very closely, especially in the first year, to make sure that the graft will take," she says. "It can be hard for some patients to deal with the reality that at some point their body might start to reject the organ, medications will need to be changed, or hospitalization may be necessary."
At the same time, Fisher says, "Generally they are happier; they feel better, and their health is improved. It's wonderful to see how their lives change after the transplant."
Today, organ transplantation saves or improves the lives of more than 25,000 people each year in the United States, according to UNOS. Yet there are more than 99,000 people on waiting lists. "Our lung-transplant patients are actively dying," says Regina Miller, M.S.S. '04, a medical social worker in the Clinical Resource Management Department at the Hospital of the University of Pennsylvania, Philadelphia. "They are sick enough to be on a lung transplant list. They are looking at their mortality head-on."
The first successful lung transplant was performed in 1983. The Penn Transplant Center was established in 1991, and has performed more than 500 procedures to date. At Penn, lung transplantation is a surgical option for select patients with advanced, nonmalignant lung disease, and is considered when all other treatment options have been exhausted. Miller estimates that 40 percent of the patients on Penn's lung transplant list suffer with interstitial pulmonary fibrosis, 40 percent with chronic obstructive pulmonary disease (COPD), and 20 percent with other diseases, "and we probably list 80 percent of the COPD patients whom we evaluate."
Miller is a member of the Penn Transplant Center's interdisciplinary transplant team, which conducts a thorough evaluation of each patient over the course of three days. Miller educates patients and their families about the process of lung transplantation, and probes for an understanding of each patient's emotional state, support network, flexibility, resiliency, and ability to comply with the program's expectations of transplant recipients.
"Generally, I am evaluating whether or not patients are hopeful," Miller observes. "I am also trying to gauge what kind of support they have. Just having someone physically with them—people who come as friends or drivers, partners who do not seem interested—is not the best criterion for support."
Miller helps the team determine whether or not the patient is an appropriate candidate for a transplant. Physicians tend to focus on the patient's physical condition and the program's mission and goals. "The social worker has to step back and balance the need for transplant with potential for poor outcomes and safety concerns due to psychiatric issues or addictions," she says. "Our role is to reframe the client in a more holistic light."
Team building is part of the dynamic. "It is important to build relationships and trust with team members, but this does not mean becoming buddies," Miller says. "We have to remain professional and feel comfortable in expressing concerns or issues about the client's welfare. It is okay for a social worker to be the gadfly on occasion, just not to the point of being destructive."
Similarly, Varner says, "I don't hesitate to raise an issue because I have relationships—these are my very close colleagues and friends, and we work in really intense situations, which means we have deeply meaningful connections."
As a senior clinical social worker in the Infectious Disease Clinic at Beth Israel Deaconess Medical Center, Boston, Amy Goldman, M.S.S. '80 works almost exclusively with patients who are living with HIV, AIDS, and co-infections with HIV and hepatitis C, as well as their partners and family members.
"The clinical part is helping people cope with the shame, isolation, and stigma of being HIV positive and the impact of the medications that they have to take to stay alive, which are often quite deleterious—there are many people who find the side effects of treatment quite daunting," Goldman says. "I also help people get connected with community resources that make life possible for them. And that is a hallmark of social work: working within the community to help people access services."
Massachusetts has a myriad of programs and resources available for people living with HIV, including housing assistance, meal delivery, dental-treatment programs, prescription-drug coverage, health insurance, support groups, and transportation assistance—part of the legacy of AIDS activism in the 1980s, Goldman says.
Today, Goldman works with a varied patient population, including gay men, heterosexual women who have been infected by sexual partners, intravenous drug users, and people who have been infected through blood transfusions. There is also a growing number of HIV-positive patients from Africa, Brazil, Thailand, and other countries where the epidemic has been concentrated in the heterosexual population.
Goldman fondly recalls a client she calls Michael, a 38-year-old HIV-positive man from Africa who was working in the Boston area and living with his girlfriend. "Michael was referred to me by his physician for financial assistance with his prescription co-payments," she says. "About a year later, Michael had the terrible misfortune of being diagnosed with an advanced renal cancer unrelated to his HIV infection. Because of his compromised immune system, Michael found chemotherapy very challenging. It became clear that he was not going to survive this tumor. He was becoming sicker, and could no longer work. To make matters worse, Michael was undocumented, having overstayed a student visa. As a result, when Michael was no longer able to work, he could not apply for Social Security disability."
As Michael's condition deteriorated, Goldman worked to help him cope with his illness and financial difficulties. After Michael was admitted to the hospital, Goldman worked with his palliative care nurse-coordinator to arrange home hospice services. "However, Michael wanted to return to Africa to die," she says.
This was very complicated. Initially, the airline required Michael to have a medical escort. "However, after his physician and I intervened the airline agreed, and Michael was able to return home. Several weeks later, he died in his homeland."
When asked if it is difficult to work with patients for whom there is no cure, Goldman replies, "I have a real interest in resiliency, and how people find the capacity within themselves to face adversity and find strength. That's something I see every day, and it is one of the things that drives me. You can't do this work for as long as I have done it without being stimulated intellectually and spiritually—not in a religious sense, but in terms of the triumph of the human spirit."
Time and Creativity
Like many health professionals, clinical social workers experience challenges and frustrations related to resources. "Medical care is ramping up in its complexity at such a powerful rate that community resources, such as nursing homes, can't keep up that level of care," Varner says. One solution is for health professionals to try "lower-tech" interventions first, she says; another is providing continuing education to teach nursing-home staff how to maintain complex care regimens.
Time is another scarce resource. "I believe that every problem can be solved," Varner says, "but it takes a lot of time and creativity to meet patients' needs."
The field also offers many rewards. "The relationships are the pay-off, both with patients and their caregivers, as well as with colleagues," Varner says. "I worked for three years with a lovely woman who was a pancreatic cancer patient at Hopkins. She went into remission for a while and went back to work. Then she had a recurrence. Her physician knew we had a strong relationship, so when it was time to talk about hospice, the three of us discussed it. Eventually, when she was admitted to the hospital, she called me and said, 'Ashley, this is it. I don't want any more treatment.' We had a meeting with her family, and she explained her decision to them. She died that night. It was very powerful. It is an incredible privilege to be invited into people's lives at a time when they feel so vulnerable. It feels like sacred work to be allowed to communicate with other people at such a level."
About Our Sources
Mary Fisher '00 is a kidney transplant social worker at the University of Southern California University Hospital, Los Angeles. Previously she was a bilingual social-work case manager for the AIDS Project Los Angeles. A licensed clinical social worker (pending), Fisher earned a Master of Social Work with a concentration in health care from the University of Southern California, Los Angeles.
Amy Goldman, M.S.S. '80 (B.A. Brandeis) is a senior clinical social worker in the Infectious Disease Clinic at Beth Israel Deaconess Medical Center (BIDMC), Boston. A licensed clinical social worker, she began her career in 1980 at Beth Israel Hospital, and has continued to work in various clinical programs at what is now BIDMC, including psychiatry, radiation oncology, ambulatory surgery, and inpatient medical/surgical services and trauma. She is on the faculty at Harvard Medical School, where she teaches a required course on the patient-physician relationship to first-year medical students. She also facilitates a program for medical interns at BIDMC.
Regina Miller, M.S.S. '04 (B.A. Cabrini College, B.S.N. West Chester University) is a medical social worker in the Medical Resource Management Department at the Hospital of the University of Pennsylvania, Philadelphia, where she works with lung-transplant patients in the Penn Transplant Center. Miller has been a registered nurse for more than 15 years in oncology, intensive care, emergency care, and high-acuity labor and delivery programs. Miller earned an R.N. Diploma from the Presbyterian School of Nursing-University of Pennsylvania Medical Center and Beaver College (Arcadia), Glenside, Pa. A licensed clinical social worker, she is a member of the Society of Transplant Social Workers.
Ashley Varner '94 was recently appointed senior director, Caregiver Programs, at The Wellness Community, an international nonprofit organization that provides free support and education to people with cancer and their loved ones. Previously she was a senior clinical social worker at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital, Baltimore. A licensed, certified clinical social worker, Varner earned a Master of Social Work from Smith College and an M.B.A. in medical-services management from Johns Hopkins Medical School and the Johns Hopkins Carey School of Business. Varner is a member of the Association of Oncology Social Work and the National Association of Social Workers.
Dorothy Wright contributes news and feature articles on science, technology, engineering and general-interest topics to a variety of publications, including Civil Engineering and Engineering News Record.
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