Topics include pain, spiritual, cultural issues
The hospice industry in recent years has worked with medical and nursing schools to improve their students’ training in end-of-life care, but such education still is needed for social workers, who commonly find themselves inadequately prepared for the issues confronting them with dying patients, experts say.
Only 31% of social workers recently surveyed said they thought the end-of-life training they received at their college was adequate for the job they went to immediately following graduation, says Mary Raymer, MSW, ACSW, who was an investigator in the study, which was conducted as part of a Soros Foundation of New York City grant to assess social workers’ educational needs for end-of-life care. She also is president of Raymer Psychotherapy and Consultation Services in Acme, MI.
“People in the trenches don’t feel like they’re getting what they need to deal with people at the end of life,” Raymer says. “The social workers surveyed identified that what they need most urgently are things like ethics, specific psychological and social needs of patients and families, spirituality, and cultural relevancy.”
Raymer and co-investigator Ellen L. Csikai, MSW, MPH, PHD, used the survey results to guide their development of end-of-life care curriculum for social workers. The result was the Social Work End-of-Life Education Project, a two-day educational seminar.
Regional hospices, hospitals, and universities have sponsored the seminar at sites across the country. The seminar, which initially was a one-day presentation, also has been provided at conferences sponsored by the National Hospice and Palliative Care Organization (NHPCO) of Alexandria, VA, Raymer says. “It’s been well received,” she reports. “There’s a definite need out there.”
The seminar costs $3,000 for the three faculty, plus travel and miscellaneous expenses, Raymer says. “Our current wish is to be provided some funding so we can create a train-the-trainers model, so there will be more faculty to take the curriculum on the road,” Raymer says. “Our goal is to inspire critical thinking and get people to ask the right questions so assessment and interventions are on target,” she adds. “We want people to recognize that working in end-of-life care really is a specialty and requires a unique knowledge base that is applied to help people reach there full potential.”
The program’s curriculum includes information about pain and physical symptoms, as well as many other aspects of end-of-life care. Here’s a look at some of the other major topics covered by the educational project:
• Cultural awareness: How a person experiences pain also is subject to societal rules and pressures, says Terry Altilio, LMSW, social work coordinator in the department of pain medicine and palliative care at Beth Israel Medical Center in New York City. Altilio is one of the project’s instructors. “We grow up in cultures and societies that have rules about how we handle pain,” Altilio says. “Do we suffer it? Do we pay attention to it? Do we go on with our lives? Sometimes we don’t understand each other in terms of how pain gets expressed.”
One patient might experience several different cultural influences, says Amanda L. Sutton, LCSW, senior program coordinator of End of Life Palliative and Bereavement Services for CancerCare in New York City. She also is an instructor for the project. “People don’t belong to one culture, they belong to many, and it’s our job as social workers to identify which culture they identify with the most, because that will impact their decision making,” Sutton says. “Are they most influenced by the fact they are a person from Laos, or are they most influenced by their gender or the role of being a breadwinner or a mother in a family?”
You have to understand the patient’s influences before you can understand why the patient is making certain decisions, she notes. “A lot of times, team members will look to us and say, ‘Why is the person or family behaving this way?’” Sutton says. “But if you stop and ask the right questions, you might find out that the person who is refusing treatment is doing so because the small financial resources he has would be best served by giving them to his family members who live with him then by using them to live a short period of time.”
Another cultural aspect to pain involves the workplace, she points out. Institutional culture has an impact on how decisions are made, how resources are allocated, and how a social worker might align him or herself to become optimally effective, Sutton explains. “How do you become aware of your colleagues’ culture and speak with them in a way that they understand?” she says. “Nurses and doctors are bottom-line people who are used to fixing problems,” Sutton says, as an example. “So sometimes when we want to raise certain issues, we need to do it in a language that will be best understood by our colleagues.”
• Grief and bereavement: Many people still view grief and bereavement through a 1970’s lens, using the stage theories, Raymer says. “Grief is really a developmental and ongoing process,” she explains.
Also, social workers and other hospice staff need to be aware of the children and adolescents who are involved in a patient’s end of life and who are grieving in different ways than are the adults, Sutton says. “One thing we try to do at the education session is ask, ‘How many of you work with kids?’ and we get one or two hands raised,” she says. “Then I say, ‘All of you work with kids because you have all these patients who have concerns about children, who are dealing with their illness and end of life.’”
Developmentally, children understand grief differently than adults, Raymer notes. For instance, children might have disenfranchised grief, which is a grief that is not socially sanctioned, Sutton says. “A lot of people that kids and teens who don’t grieve in the same way as adults are not grieving as much,” she explains. “But kids may have very intense feelings one minute, and in the next minute they run out and play; then two days later, they want to talk about it.”
Social workers and hospice staff need to educate parents about how to handle it when kids finally do bring up their own grief, Sutton says.
• Spiritual assessment: Hospice social workers sometimes fear getting involved in turf warfare and will leave the spiritual realm to the chaplain, but this would be a mistake, Sutton notes. “I think a lot of times people will talk to us and speak about spiritual issues,” she says. “We as trained active listeners need to acknowledge those moments and engage the client in exploration of the issues.”
Also, patients and their families often are more comfortable talking with the social worker about spiritual challenges or any shame they may be feeling, Sutton says. “Like if they are at the end of life and they feel betrayed by God and are ashamed of those feelings, they may have some spiritual suffering because of that,” Sutton says. “If somebody were to say to me, ‘I feel tremendously ashamed because right now I hate God because I’m dying of cancer,’ I would look at those issues the same way as if they were saying they hated their mother.”
In other words, a social worker would help the person seek a better understanding of his or her feelings by asking these kinds of questions:
— Do you think God is punishing you?
— What have you done to make you feel worthy of punishment?
“These questions help to break down those complex feelings, and then you can problem-solve and do a reality test, and all of those things are part of social work,” Sutton explains.
Also, social workers often can help resolve family rifts that occur when the patient’s spiritual feelings are not in concert with his or her family’s spiritual feelings, she notes.
“It’s important to explore their views of the afterlife, because if somebody’s in tremendous crisis before they die then probably it will come up with the caregivers during the bereavement process,” Sutton says. “Crisis moments are good opportunities to change values, and that’s another piece we do.”
Social workers can find out whether spiritual issues will play some role in the patient’s and family’s end-of-life care by asking them these open-ended questions, she suggests:
— What gives your life meaning?
— What gives you a sense of purpose?
— What values do you have?
— How did you get those values?
— Who were the people who were great role models for you?
— Why were they great role models?
— What makes your life worth living?
— How do you spend your time?
— Do you find yourself being reflective in the day?
— Where do you seek pleasure?
“All of those can be elements of spirituality,” Sutton explains. “Through that process their thoughts on god comes out.”
• Secondary trauma/self-care: Social workers may be well aware of the emotional ramifications of working with end-of-life care patients and families, Sutton says. But the problem is that social workers sometimes are the very people other members of the staff go to for help when they’re experiencing burnout, so their emotional load is even heavier, she suggests. “Social workers first have to help themselves,” Sutton says. “We talk about practical ways to help yourself in terms of rituals you do to separate your life from your work.”
It may be as simple a device as changing one’s shoes or listening to relaxing music on the ride home, she says. “Give yourself direct transitions so you’re not taking work home with you,” Sutton advises. Otherwise, it may be very hard to separate work life from home life because social workers are very invested in their clients, and they naturally will think about a patient who is dying while they are home fixing dinner, Sutton explains. “Also, social workers often are the only social worker on a team, so they work in isolation,” she says. “It’s very helpful to have multidisciplinary team meetings and meet regularly with other social workers to process what various experiences have been.”
The education project has a networking component built into it, so social workers can share their concerns and burdens with their peers, Sutton says.
Need More Information?
- Terry Altilio, LMSW, Social Work Coordinator, Department of Pain Medicine and Palliative Care, Beth Israel Medical Center, 350 E. 17th St., Baird 12, New York, NY 10003. Telephone: (212) 844-1467.
- Mary Raymer, MSW, ACSW, President, Raymer Psychotherapy and Consultation Services, P.O. Box 105, Acme, MI 49610-0105. Telephone: (231) 938-9610. Email: [email protected].
- Amanda L. Sutton, LCSW. E-mail: [email protected]. Telephone: (917) 754-8315.
The hospice industry in recent years has worked with medical and nursing schools to improve their students’ training in end-of-life care, but such education still is needed for social workers, who commonly find themselves inadequately prepared for the issues confronting them with dying patients, experts say.
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