By JULIE MINDA
For palliative care workers, every day can be emotionally challenging.
As caregivers to patients with chronic or end-stage illnesses and their families, they daily help people who may be debilitated by pain or anxiety navigate advanced care planning, end-of-life decision making and all the complex feelings that come with these choices.
The constant exposure to suffering can overwhelm palliative care workers. To help ensure that doesn't happen at the Torrance, Calif., campus of Providence Little Company of Mary Medical Center, the palliative care team there is intentional about processing in weekly group meetings the experiences and emotions of staff members.
"Inpatient palliative care (workers) are ripe for burnout — it's very taxing work. Taking time for reflection is essential to creating a sustainable way of holding in there for the long haul," said Chaplain Denise Hess, one of six team members with the Edmond R. and Virginia G. Doak Center for Palliative Care, the inpatient palliative care service for the Torrance campus (Little Company's San Pedro campus has a separate palliative care team).
A safe space to talk
The palliative care team has been meeting almost every Friday for more than a year to analyze how well the team is functioning, how team members are handling their work and whether everyone is caring for themselves and their teammates. Unlike their daily planning meetings and the regular debriefing sessions they have on specific patient cases, these hour-long meetings include personal reflective time.
"This work requires self-reflection and self-care and team reflection and team care because it is so emotionally challenging," said Dr. Glen Komatsu, who launched the palliative care service at the Torrance campus and heads the palliative care team.
Hess leads the reflections, which normally start with abstract ideas about caregiving and then segue into team members recounting their own experiences, both regarding their work and personal lives. Most of the sessions have been built around a book that resonated with the team members, A Place of Healing: Working with Nature & Soul at the End of Life, by Michael Kearney. Hess said that as team members delve into their experiences, they process their emotions and tend then not to internalize them. Internalizing the feelings could become an emotional burden hampering the team members' personal and work lives.
Hess, who has a background in family counseling, said as team members explore their emotions, the discussions sometimes can feel as intimate as a therapy session. But, this hasn't been a problem, she said, because team members trust each other and feel safe in the discussions.
"The meetings are invaluable," said Nancy Kolanz, one of the two full-time palliative care nurses on the team. "We get to know each other as people and delve into our deepest emotions. Sometimes you don't even know you're feeling something until you start to talk about it.
"Human emotions can block us," she added, "and so it's helpful to meet and review what we're doing and discuss our emotions and open up."
Dr. Tiffany Ellis, associate medical director on the team, said the discussions with empathetic colleagues can "normalize the moral distress you're feeling. It's hard to do this work as one person — but (here we learn) the whole team can support us."
Hess said the discussions have enabled the team to handle the pain they see every day. "As humans, we're wired to want to make sense of pain and suffering. (These meetings) help us to frame this."
Emotionally complex work
Hess said, "For our team, the pain we talk about most is the pain we are witnesses to as we interact with patients and their families." Most of the team's patients have end-stage conditions including congestive heart failure, advanced cancer, pneumonia and chronic obstructive pulmonary disease. The consults with patients very often involve high-stakes, life-altering choices.
"We're helping them with what is probably the most difficult part of their life," said Marianne Ayala, a nurse and the manager of the team. Virtually every patient they see is experiencing physical pain that is difficult to manage and many also experience emotional and spiritual distress.
"We work in a lot of grey areas," without easy answers, said Ellis. There's not always a "right" answer when it comes to how best to manage pain and which choices to make on advance directives, for instance.
Komatsu said that even initiating discussions about the end stages of life can be thorny. "The American culture is not very focused on death and dying, and people are not accepting of it, and so it's challenging to talk about."
Patients and families may make choices that seem unadvisable, such as wanting treatments that appear futile, and may add to patients' suffering, said Hess, and this can trouble the palliative caregiver.
It also can be taxing, said Kolanz, "when we meet families in very desperate situations, like when the disease is so advanced (but) families and patients are not aware of how imminent death is, or when the family has a poor communication dynamic. It is difficult to be therapeutic to them."
Nurse Ayala said it is tough when "I see people my own age or who remind me of family members or friends — and seeing what can happen with serious illness. It's hard to witness their suffering."
Finding meaning
Nurse Kolanz said, "It's a lot to carry with you. If we don't have an opportunity to discuss it and diffuse it, it would be too painful to come to work."
Hess often refers to the weekly reflections as spiritual narratives, because team members are relating their experiences to a broader story, the story of the caregiver as helper and patient as a participant in the healing. "We're just here to hold our patients and let them process the suffering. This idea freed us and let us let go of our own agendas and feelings of ÔWe must do it our way.'" Personal agendas are a recipe for disaster in this work, she said.
Kolanz said ultimately the reflective process helps the team "create a space for patients to experience healing — a space that is safe and nonjudgmental. This allows them to experience suffering with care surrounding them and to come out of it stronger and more in touch with their experience."
A Place of Healing
The palliative care team at Providence Little Company of Mary Medical Center in Torrance, Calif., bases many of the reflections it uses to get the conversation started in its emotion-sharing sessions on Dr. Michael Kearney's book, A Place of Healing: Working with Nature & Soul at the End of Life.
Kearney, a palliative care physician, is medical director or associate medical director at two end-of-life programs in Santa Barbara, Calif.
In the book, Kearney contends that medicine has focused too exclusively on the practicalities of treating individual physical symptoms and too little on also addressing the spiritual and emotional aspects of pain. Caregivers, he says, should create a safe place for holistic healing of body, mind and spirit; and he analogizes that place to a container, like an alchemist's vessel, in which a transformation can take place. The Little Company of Mary team says this concept helps them to see their role in a new perspective — as a conduit for holistic healing — and let go of feeling responsible for elements of terminal illness and family dynamics that are out of their control.
Coalition head recommends ministry tend to palliative caregivers
With more and more Catholic health care providers offering palliative care, it will be important for those organizations to tend to the spiritual and emotional needs of those caregivers. That is according to Tina Picchi, executive director of the Supportive Care Coalition: Pursuing Excellence in Palliative Care, a network of health care providers looking at how best to care for people at the end of life or who have serious chronic illness.
Statistics show more and more facilities are offering palliative care services, she said, noting that the number of Catholic hospitals (of 49 beds or greater) offering such services increased 84 percent between 2001 and 2009. More than 70 percent of Catholic hospitals in the U.S. offer the service.
Citing the work of author and presenter Betty Ferrell, Picchi said that palliative caregivers can develop close, intense relationships with their patients as they witness their suffering, and as the caregiver and patient become vulnerable to each other.
Other emotions — particularly moral distress — can arise when the clinician feels she must participate in administering what she perceives as treatments that are more harmful than good.
Clinicians' spiritual bearings can help them to navigate such stressors, Picchi noted, citing Ferrell. Ferrell is professor of nursing research and education at the City of Hope Cancer Center of Duarte, Calif.
Picchi said the weekly team reflective process used by the palliative care at Providence Little Company of Mary Medical Center in Torrance, Calif., "is an excellent way to nurture spiritual well-being, attend to spiritual and emotional distress, build resiliency and promote team sustainability."
She said that team's practice is "quite remarkable" in that "many teams strive to incorporate elements of self-care and attend to the spiritual dimension of palliative care within the context of their team conference meeting times, but it is rare that a team commits to a time apart weekly just for this purpose."
Picchi said she is aware of other ways, too, in which palliative care teams refresh themselves spiritually and emotionally. Some teams have rituals or memorial services for staff to remember and honor those they cared for.
Torrance palliative care services are expanding
The demand for palliative care is growing, and the palliative care team at Providence Little Company of Mary Medical Center in Torrance, Calif., is expanding its programming in preparation. It is planning to create an on-campus training institute.
That is according to Dr. Glen Komatsu, who established the palliative care team at Providence Little Company of Mary Medical Center's Torrance campus. Komatsu said that with health care reform, the demand for palliative care could rise even further. That is because hospitals are looking at ways to improve care quality while reducing care costs and research has shown palliative care teams can accomplish both aims. If clinicians and administrators are convinced that this can be done, it's likely they'll want palliative care to have an even greater role in health care.
He said that Little Company's parent, Providence Health & Services, recognizes the value of palliative care and wants to train teams from all its facilities in its five-state network in this skill set. And so, by this summer, the Torrance campus plans to add a facility where Providence staff can go for palliative care education. In the future, the training may also be open to clinicians at other health care providers.
The plan is for the institute to offer different levels of training to meet the needs of clinical and nonclinical staff and potentially community members. While specific programming has yet to be developed, the institute potentially would provide courses lasting a brief amount of time — just a day or several days — to lengthier programs that span a year or so. It may provide train-the-trainer-type courses and credentialing — it depends on the need and demand, said Denise Hess, chaplain with the palliative care team at the Torrance campus, and that has yet to be fully determined. Hess said the institute may provide formal fellowships in various clinical disciplines.
Out-of-town students will stay at local hotels.
Also, since most patients receive health care on an outpatient basis, the Torrance team plans in the long term to offer palliative care in a clinic setting and to home care patients.
Hess said the campus likely will add palliative care staff, depending on the amount of funds they can raise through a fund-raising campaign, grant support and organizational funding.
Buy-in needed for palliative care success
The palliative care team at the Torrance, Calif., campus of Providence Little Company of Mary Medical Center, consider the following to be important to the success of a nascent palliative care program:
- Secure administrator buy-in. Without this, a program will not be robust, according to Dr. Glen Komatsu, head of the palliative care team at Little Company. Komatsu said since the medical center's administrators recognize the mission imperative for the program, they have given it the resources it needs to grow beyond the scope of most such programs.
- Educate physicians. Clinicians may fear palliative care teams will steer patients away from certain treatments or that their presence is a signal that death is imminent. That's why it's important to educate doctors and nurses about the supportive role palliative care teams plan and the range of options they offer patients — and not just those at the end of life — said Dr. Tiffany Ellis, associate medical director on the team.
- Try to form an interdisciplinary team. The Torrance team includes doctors, nurses and a chaplain — and plans call for a social worker as well. Having such a broad range of experiences enable team members to cover many bases with the patients. This allows them to provide more holistic care, said Denise Hess, the team's chaplain.
- Enable team members to focus and specialize. Komatsu said many facilities have an interdisciplinary palliative care team, but the team members are not dedicated full-time to that role. At the Torrance campus, they can commit their time fully because palliative care is their primary responsibility, he said. Also, if resources allow, team members should get specialized training in palliative care.
- Make time for self-care. Since palliative care workers can be extremely busy, it may feel as though there's no time to set aside for self-care, such as in the reflective meetings, said Anne O'Halloran, administrative assistant for the team. But, it's important to take that time so that the team can be as effective as possible in its work.
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