A new collaboration
connell school news
By Alex Cohen
Rosanna DeMarco, Connell School of Nursing associate professor of community health, and Karen Kayser, Graduate School of Social Work professor and chair for health and mental health
Rosanna DeMarco is a researcher and faculty member in Boston College’s Connell School of Nursing, whose main interest area is African American women living with HIV. Karen Kayser is a researcher and faculty member in the University’s Graduate School of Social Work, who focuses her efforts on patients and families diagnosed with cancer. The two decided to create a cross-disciplinary palliative care research team in inner-city Boston neighborhoods; their complementary areas of focus made it a perfect partnership. Now they are working together to design and implement a palliative care intervention model for congestive heart failure and advanced cancer patients in some of the most underserved communities in Boston.
“Palliative care is best described as the care given to someone who is diagnosed with a chronic illness that might be life-threatening or is at least a downward trend,” explains DeMarco. Common perceptions of palliative care tend to equate it with end-of-life care, but in recent years there has been a steady transition to delineate the two. “Palliation begins with a conversation,” says DeMarco. “What is quality care for you? And what resources can we obtain to give that care? We need to start early in asking these patients what they need to build their quality of life, and whether they want curative or intensive types of care.”
DeMarco and Kayser kept this patient-oriented approach at the center of their current research when they and their interdisciplinary research team began to establish partnerships in Boston communities. DeMarco’s nursing expertise in public and community health combines with Kayser’s psycho-social expertise focusing on caregiver burden and quality of life. The nurse and social worker team connect in being principally committed to healing, a step beyond the curative method of medicine.
“What nursing does is pay attention to symptom management and pain control,” says DeMarco. “This could be helping someone with chronic breathing problems figure out how to minimize exertion, or finding a balance between how much medication a patient needs versus how much pain they are willing to manage on a daily basis.” Sometimes healthcare providers prescribe medication that completely masks the pain, but some patients would rather manage a small amount of pain in order to be a little more alert and a little less drowsy.
Social work focuses not just on the individual, but on the family as a whole. A big part of addressing familial issues in palliative care is communication. Throughout her research, Kayser says communication is something that patients have identified overwhelmingly as the biggest issue to address. Her role is to determine how to best facilitate communication within the family.
“It’s not uncommon for women patients to do much more of the family and house work,” says Kayser. “Oftentimes they find it difficult to give up those responsibilities, but it’s important to speak to the husband and the family as a whole to help distribute the burden.” Ultimately, the team tries to identify what kind of support will be most helpful to each unique patient and family.
Beginning a collaborative approach to palliative care in Boston is not only beneficial to the patients. “One of the great things about our work is that we got a lot of support from the professional staff and agencies,” says DeMarco. “When we talked to physicians, nurses, and social workers at Boston Medical Center, all of them said that congestive heart failure patients have one key issue: hospital recidivism.” A problem for health care professionals and the health care system alike, hospital recidivism is the likeliness that a patient will relapse in his or her own home, making another hospital visit necessary.
“Because of the changing context of healthcare,” says Kayser, “more burden is being placed on the family rather than the hospital when patients are sent home.” To Kayser, a hospital visit today is like a Band-Aid—it provides a temporary solution to a health problem. Hospitals often discharge patients without following up on them. DeMarco and Kayser want to see care continuing into the home, especially in social groups that are affected by health disparities.
“Our team is working with Boston Medical Center, a hospital that serves the poorest of the poor. These are the people most affected by health disparities,” says DeMarco, “meaning that if you live in an inner city and are a person of color, it is less likely that you’re going to participate in a conversation with a nurse or social worker about your options for palliative care.”
The Boston focus groups that DeMarco and Kayser have spoken with have confirmed that palliative care is less likely to be discussed or implemented in underserved groups. The Greater Love Tabernacle (a large African American church), the Labouré Center visiting nurse service, Women Connecting Affecting Change (WCAC), and the Whittier Street Neighborhood Health Center have all participated in focus group studies.
“We asked people in the focus groups questions about their care,” says Kayser. “What stresses you most about your healthcare? What are some of the barriers to your healthcare?” In addition, Kayser asked whether a program involving a nurse and a social worker, available to provide home visits and discuss issues around chronic illness, would be helpful or intrusive. “The answers were pretty consistent—we received an unequivocally positive response, which was surprising because we had different groups of people from different backgrounds.”
The responses of these focus groups have led Kayser and DeMarco to believe that a community-based approach to palliative care—with both nurses and social workers—could be immediately beneficial to patients with chronic illnesses. However, DeMarco notes that a key aspect of their research and intervention model is peer involvement. “This is a research approach called participatory action. It’s very effective because there is interaction within the community to solve a community-based problem. It’s much more credible for a peer to run interventions; the idea of peers working with professionals is something that I’ve learned to be a must.”
In introducing the participatory action approach, DeMarco and Kayser will develop a thorough treatment protocol with a detailed training manual. Once completed, the research team will recruit participants for the study and begin interventions.
“We have a palliative care team that includes consumers,” says DeMarco. “It includes the voices of those who understand the realities of people in the inner city and in the neighborhood.”
DeMarco and Kayser have recognized a community’s need for palliative care conversations. “We’ve done the homework,” says Kayser, “but now we need to find out what works best for the patients, and we need to begin developing a self-sustaining community approach because that is the best way forward for the long-term.”
For congestive heart failure and advanced cancer patients in inner-city Boston, this is something to look forward to.