Introduction
For this assignment I wanted to interview a hospice or palliative care social worker. Since I did not know any personally, I did a Google search for local hospice and palliative care providers and began calling and asking if I could talk to any available social workers. After several social workers failed to call me back, I finally got through to Lisa B., who works at Exempla Lutheran Medical Center’s Palliative Care at Home. Lisa B. said that she was extremely busy but, after I promised to keep it short, agreed to an interview.
When I asked why she became a social worker, Lisa B. (personal communication, March 8, 2013) told me that she has always been an empathetic person and a good listener. She developed a strong sense of social justice at a young age, perhaps surprising since nobody else in her family was very interested in social and political issues. Knowing all this about herself, she realized in college that social work would be a natural fit.
In 1979 Lisa B. (personal communication, March 8, 2013) earned a Master of Science in Social Work from the University of Wisconsin-Madison. She was open to different types of social work and soon landed a job as a mental health social worker. She worked in the mental health field for the next two decades. In 2003 she decided to “switch gears a little bit” and began working in hospice and then in 2010 took a position at Exempla Lutheran’s newly established Palliative Care at Home. She is excited about the work she is currently doing and plans on staying there until retirement.
Description of the Agency
Exempla Lutheran Medical Center’s history goes back to the first years of the twentieth century when a group of Evangelical Lutherans founded a tuberculosis sanatorium in Wheat Ridge, Colorado (“History of ELMC,” n.d., para. 1). Over time tuberculosis became less prevalent, and in 1961 the sanatorium was converted into a full-fledged hospital (“History of ELMC,” para. 2). In 1985 Lutheran began providing hospice care (Lutheran Hospice, n.d.), and in 2010 it established its Palliative Care at Home unit (L. Lisa B., personal communication, March 8, 2013).
The primary objective of Exempla Lutheran’s Palliative Care at Home is to combine “pain and symptom management assistance with emotional, spiritual, social and psychological support in the comfort of the patient’s home” (The Cancer Center at Exempla Lutheran Medical Center, n.d., p. 16). From its inception, Palliative Care at Home has employed social workers to help accomplish this goal (The Cancer Center at Exempla Lutheran Medical Center, p. 16).
Exempla Lutheran Medical Center is a nonprofit, faith-based organization (“Exempla Lutheran Medical Center,” n.d., para. 11). Palliative Care at Home uses a fee-for-service system, meaning that it charges patients each time someone from the medical center makes a home visit (Lisa B., personal communication, March 8, 2013). Most palliative care patients are mostly insured by Medicare and/or Medicaid. Because current law makes it difficult for palliative care social workers to bill for visits, Lisa B. must be technically considered “an extension of the medical service.”
Nature and Scope of the Agency’s Services
Exempla Lutheran’s Palliative Care at Home provides care for individuals with terminal illnesses and prognoses of twelve months or less; individuals with terminal illnesses and prognoses of six months or less are treated by the medical center’s hospice facilities (Lisa B., personal communication, March 8, 2013). Palliative Care at Home employs a team of physicians, nurses, and social workers that work together to provide three main services: help patients and families with “decision-making related to goals-of-care and treatment options;” give “[e]motional, spiritual, social, and psychological support;” and provide “[p]ain and symptom management” (The Cancer Center at Exempla Lutheran Medical Center, n.d., p. 16).
Lisa B. (personal communication, March 8, 2013) summarized her job as one that offers “different types of psycho-social support and resources to both the patients and their families.” One type of support she offers is anticipatory grief counseling (that is, helping patients and family members cope with the patient’s impending death), as well as grief counseling (helping family members once their loved one has died). She spends much of her time helping clients and their families procure various types of financial assistance. She also spends much time educating clients and their families. This education often focuses on the various issues—physiological, emotional, and other—that her client’s will be facing in the coming months. It sometimes focuses on powers of attorney and advance directives, which are written statements outlining “the medical options and procedures a person may or may not want to prolong life” once they are no longer able to make those decisions (Segal, Gerdes, and Steiner, 2013, p. 230).
Exempla Lutheran’s Palliative Care at Home serves individuals from many different cultural and ethnic backgrounds (Lisa B., personal communication, March 8, 2013). Over the years Lisa B. has learned the importance of cultural competence, that is, being able “to understand individuals and families of different cultures and to use that understanding as a basis for intervention and practice” (Segal et al., 2013, 131). “One of the things that’s pretty evident,” she told me, “is that different cultures have different [levels of] family involvement” (Lisa B., personal communication, March 8, 2013). She appreciates cultures that refuse to put their family members into nursing facilities and tries to employ the strengths perspective when working with them. That is to say, she tries to utilize these families’ strengths (Segal et al., 2013, p. 10)—their love and also their unique knowledge and talents—to get them to work together to help their dying loved ones (Lisa B., personal communication, March 8, 2013). She has learned to be careful as she goes about doing this, having learned the hard way that bringing families together often results in unproductive bickering between members.
Lisa B. (personal communication, March 8, 2013) often deals with controversial issues in her work. For instance, she regularly works with extremely sick clients who want to commit rational suicide. (Rational suicide, she explained, occurs when a terminally ill patient, usually one experiencing difficult-to-manage pain and symptoms, takes their own life. Irrational suicide, in contrast, occurs when a physically healthy individual takes their own life.) Lisa B. is legally prohibited from helping her clients end their own lives. She tries to help them explore their feelings. Simply giving them the opportunity to talk, inviting them to talk in a calm, non-judgmental, non-threatening way, usually “takes a lot of pressure off of them.” They no longer “have to hold [their suicidal thoughts] secret.” She also tries to better educate such individuals about hospice, letting them know that “hospice is typically really, really good at managing those symptoms.” Sometimes she also tries to get them information “about what death might actually look like in ways that they can have control.” After she undertakes these actions, her clients usually no longer desire to commit suicide.
By demonstrating to the medical community the virtues of “the person and environment model,” Lisa B. (personal communication, March 8, 2013) believes that hospice and palliative care facilities are bringing about institutional change in social welfare. Whereas the medical community generally focuses exclusively on patients and their physical and/or psychological maladies, hospice and palliative care facilities focus on both patients and their environments and in so doing model, as Segal et al. (2013) put it, the benefits of “help[ing] society work better for people and help[ing] people function better within society” (p. 2).
Policy changes regularly impact palliative care providers. One Google search, for example, found a statement by the National Hospice and Palliative Care Organization decrying that cuts to Medicare reimbursement would have a “devastating” affect on hospice and palliative care patients, causing patient costs to rise significantly (“Reimbursement cuts will,” 2011, para. 1-4). Another Google search yielded an article discussing a series of “end-of-life laws” passed by the Colorado legislature in 2010 (Brown, 2010). One of these new laws allowed hospice and palliative patients to authorize Medical Orders for Scope of Treatment (MOST). Like a living will, a MOST form expresses a patient’s wishes regarding end-of-life; but whereas a living will is “considered an expression of patient wishes, the MOST form carries the power of doctors’ orders” (Brown, 2010, para. 26). Nobody from Exempla Lutheran Palliative Care at Home undertakes any major action to impact public policy, although Exempla Healthcare employs lobbyists (Lisa B., personal communication, March 8, 2013).
Nature of Intervention Approaches or Methods Used by the Agency Personnel
All Exempla Lutheran Palliative Care at Home social workers must be licensed in clinical social work and must have some experience with both clinical and medical social work (Lisa B., personal communication, March 8, 2013).
One intervention approach Lisa B. (personal communication, March 8, 2013) uses at the micro level is cognitive-behavioral therapy (CBT). She usually employs CBT when dealing with patients suffering from anxiety over their impending deaths. CBT aims to mitigate undesirable feelings and behaviors by teaching patients to discard erroneous beliefs and to unlearn certain “habitual reactions” (Segal et al., 2013, p. 154).
An intervention approach Lisa B. (personal communication, March 8, 2013) uses at the mezzo level is educating family members about the different roads their loved one’s illness might go down. By providing this road map, so to speak, by describing what specific symptoms a loved one might develop, how pain medication might affect their mental faculties, and so on, she says that family members often feel empowered and better prepared for the upcoming months. Sometimes this education puts to rest ill-founded fears that family members might have had.
Although Lisa B. (personal communication, March 8, 2013) does not use any formal intervention approaches at the macro level, she often interacts with the larger community. For instance, she frequently collaborates with outside physicians, nurses, and social workers, as well as individuals at different levels of government. She feels that this collaboration often takes the form of outreach, as it gives her the opportunity to educate people, who are usually inquisitive, about palliative care, which is a fairly recent field.
One intervention approach Lisa B. might do well to consider for some patients is existential psychotherapy. Breitbart, Gibson, Poppito, and Berg (2004) write that many terminally ill patients suffer existential anxiety, doubting, for example, if there is a purpose to existence and if their own lives have any meaning. Breitbart et al. point to studies showing that terminally ill patients who feel that their lives have meaning are better able to tolerate physical pain and also have lower levels of hopelessness and depression. They point to a group psychotherapy program based on the principles of Viktor Frankl’s logotherapy. The therapist in this program used assigned readings, homework assignments, and group discussions to encourage patients to take an active part in finding new sources of meaning for their lives. Breitbart et al. make a compelling case for the need for such intervention, which could benefit many individuals who want to find meaning apart from, or in addition to, religious sources.
Another intervention approach Lisa B. might want to consider is teaching family caregivers the COPE model. The COPE model, as McMillan et al. (2005) explain, helps individuals better cope with stressful situations by teaching them various problem-solving principles, namely, Creativity (seeing problems from a fresh perspective), Optimism (adopting a positive but realistic outlook), Planning (setting specific and achievable goals), and Expert information (reaching out to appropriate resources when necessary). McMillan et al. conducted an experiment in which one group of caretakers was given emotional support (general encouragement but not specific advice or training), while another was taught the COPE model. The group that had been taught the COPE model saw a greater increase in their quality of living and a greater reduction in their stress levels. Improving caregiver quality of living and mitigating their stress, McMillan et al. argue, will generally help them better care for their loved ones. Although Lisa B. indicated that she provides some of the above training, I think that many of her clients and their family caregivers would benefit if she taught caregivers the entire COPE model.
Lisa B. (personal communication, March 8, 2013) does not currently have any means for measuring the effectiveness of her intervention approaches. “We need to do some research on what we’re doing,” she told me. Nonetheless, CBT has been proven to reduce anxiety and depression in palliative care patients, even when given by individuals with minimal CBT training (Anderson, Watson, & Davidson, 2008). I am not aware of any research regarding Lisa B.'s mezzo-level approach.
Conclusion
I am not sure if I would like to work with terminally ill patients. I recognize that these individuals and their loved ones have enormous needs, and I can see that people like Lisa B. make a real difference in their lives. Still, I worry that such work might be too emotionally draining for me. One hospice social worker I read about stated that he regularly meditates on his own mortality and that this allows him to “stay with people emotionally who are hurting because of their own morality” and also relieves him “of any messianic complex” (Liechty, 2012, p. 298). Like this social worker, I try to be mindful of my own mortality, but I still wonder if I would have the strength to remain emotionally intact while working daily with terminally ill individuals. I was impressed that even though Lisa B. has worked in the field for several years she seems energized by her job. I need to figure out how working in a similar position would affect me.
References
Anderson, T., Watson, M., & Davidson, R. (2008). The use of cognitive behavioral therapy techniques for anxiety and depression in hospice patients: A feasibility study. Palliative Medicine, 22, 814-821.
Breitbart, W., Gibson, C., Poppito, S.R., & Berg, A. (2004). Psychotherapeutic interventions at the end of life: A focus on meaning and spirituality. The Canadian Journal of Psychiatry, 49(6), 366-372.
Brown, J. (2010, June 3). New hospice, end-of-life laws put Colorado at forefront of care. The Denver Post. Retrieved from http://www.denverpost.com/commented/ci_15215291
The Cancer Center at Exempla Lutheran Medical Center. (n.d.). 2009-2010 Annual Report. Retrieved from http://www.exempla.org/documents/ELMC/elmc_cancerreport10.pdf
Exempla Lutheran Medical Center. (n.d.). Exempla Healthcare. Retrieved from http://www.exempla.org/body.cfm?xyzpdqabc=0&id=11&action=detail&ref=688
History of ELMC. (n.d.). Exempla Healthcare. Retrieved from http://www.exempla.org/body.cfm?id=219
Liechty, D. (2012). Hospice social work. In L.M. Grobman (Ed.), Days in the lives of social workers: 58 professionals tell “real-life” stories from social work practice (pp. 293-298). Harrisburg, PA: White Hat Communications.
Lutheran Hospice. (n.d.). In Memory. Retrieved from http://www.exempla.org/documents/ELMC/lmcf_hospice.pdf
McMillan, S.C., Small, B.J., Weitzner, M., Schonwetter, R., Tittle, M., Moody,
L.,…Haley, W.E. (2006). Impact of coping skills intervention with family caregivers of hospice patients with cancer: A randomized clinical trial. Cancer, 106(1), 214-222.
Reimbursement cuts will negatively affect hospice care—particularly in rural America. (2011). Retrieved from http://www.nhpco.org/press-room/press-releases/profit-margin-summary
Segal, E.A., Gerdes, K.E., & Steiner, S. (2013). An introduction to the profession of social work: Becoming a change agent (4th edition). Belmont, CA: Brooks/Cole.
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