By PAULA BOMMARITO
The elderly enter nursing homes because they need help and can no longer remain at home. They are frail, vulnerable and in most cases, deeply saddened — even frightened — about losing their independence. While many are in physical pain, the emotional, social, mental and spiritual pain often outweighs the physical.
Palliative care professionals are equipped to assess and respond to all those areas of pain. But it is the rare nursing home that has a formal program in palliative care.
Sr. Peter Lillian DiMaria, O CARM, would like to change that. As director of the Avila Institute of Gerontology in Germantown, N.Y., she is raising the palliative care consciousness of nursing home administrators and encouraging them to train their staffs to deliver comprehensive, individualized and compassionate care.
Palliative care employs an interdisciplinary care model intended to relieve suffering and improve quality of life for residents with chronic and debilitating or advanced illness. Unlike hospice care, or end-of-life comfort care, palliative care is appropriate throughout an illness, even when a resident is receiving curative or rehabilitative care.
In the January 2010 issue of Health Affairs, palliative care champion Dr. Diane E. Meier makes the argument that palliative care, together with restorative care, should be standard for all elderly nursing home residents with dementia, a diagnosis that she says applies to seven of 10 nursing home residents. Meier is professor of geriatric and internal medicine, and medical ethics at the Mount Sinai School of Medicine in New York City. She directs the Center to Advance Palliative Care and the Lilian and Benjamin Hertzberg Palliative Care Institute.
Sr. DiMaria maintains that individualized palliative care should be part of the care plan for every nursing home resident. "In as much as palliative care looks to safeguard a resident's spiritual and emotional well-being, it is a beneficial tool for Catholic providers of long-term care," she said. And Sr. DiMaria believes nursing homes can prepare staff for their role as primary palliative care providers by offering training that promotes empathy and sharpens skills in symptom and pain assessment, particularly in residents who can no longer communicate.
Measuring emotional suffering
Sr. DiMaria gave a hypothetical example of an elderly woman who fell at home while getting her mail and broke her hip. She lived alone and had no one to help her. A nursing home was her only option. When admitted, she was in physical pain and extremely sad. In order to understand her situation, a staff member would have to take the time to really listen to her. In doing so, the interviewer would learn that her pain from the broken bone was nothing compared to her heartache. "She knows she was never going home again. She wouldn't be able to fix her own meal again. She could never entertain grandchildren in her home again," said Sr. DiMaria. Through gentle but persistent questioning, Sr. DiMaria said one is able to understand a resident's psychological pain, then provide comfort and spiritual counsel.
For the cognitively impaired, the root of pain can be elusive. "In the mind of someone with dementia, he may be living back in 1942," Sr. DiMaria said. "He doesn't know where he is and wonders why his mother abandoned him. He is terrified," she said. Emotional pain of this nature is real for dementia residents. It can cause tremendous suffering, often displayed through behaviors such as yelling, hitting or thrashing around, which are all forms of communication. In these cases, Sr. DiMaria stressed the importance for staff to be empathetic. "They must allow residents to express those feelings within his or her own reality," she said.
What don't they know?
Caregivers naturally view residents through the lens of their respective disciplines, Sr. DiMaria explained, yet individuals do not benefit from being defined by their infirmities. "For example, clinical staff tend to focus on what's happening physically. We must remember it's not just about the hip fracture, it's about the whole person," she said.
Formal palliative care programs usually incorporate an interdisciplinary approach that involves medical and nursing specialists, social workers, clergy and others.
Sr. DiMaria suggests that nursing homes that want to adopt palliative care practices must first assess staff's general knowledge of palliative care. She then recommends they establish an education team, with members from various disciplines (clinical, social work, spiritual care, etc.), to keep each other abreast of current issues within their areas of expertise. The education team's responsibilities might include evaluating pain measurement tools, selecting an instrument and teaching staff how to use it. For example, the Pain Assessment in Advanced Dementia Scale, commonly known as PAINAD, helps staff identify pain in dementia residents through five indicators — breathing, vocalization, facial expression, body language and consolability.
Anne Marie Kelly, pain management educator and consultant for Catholic Memorial Home in Fall River, Mass., is a nurse who is certified in pain management and end-of-life care. She is also a nationally certified trainer for the End-of-Life Nursing Education Consortium. She has been coaching caregivers about the palliative approach to managing pain since the early 90s.
"Education is key for the caregiver and residents," Kelly said. At Catholic Memorial, new employees receive initial training in pain assessment and palliation during orientation. Ongoing education is provided for staff. "We train them about what palliative care is and the signs and symptoms of pain, as well as the signs and symptoms at end of life," she said.
For residents and their families, Kelly helped develop an educational brochure that is given out on admission to help them understand what to expect from the home's pain management program.
One of Catholic Memorial's strategies is to ensure nursing staff on all shifts receive the same training, which keeps everyone on the same page about goals of care. Development of strong assessment skills is an essential area of focus. "In long-term care, we don't have physicians here every day," she said, "so nurses and nurse assistants need to be on top of things and more observant than ever before." She added that in many cases, input provided by nurses to physicians via telephone ultimately result in what doctors order for residents, "so it's critical for nurses to have excellent assessment skills," she said.
Catholic Memorial's pain and palliative care team includes representatives from the nursing, pastoral care, rehabilitation and activities departments. The team meets weekly to problem-solve about residents whose pain is not controlled. "You need the expertise to help with whatever aspect of life is causing the most pain, to assist," she said.
Getting the elderly to report pain to caregivers can be challenging. Kelly said people may fear being labeled as complainers or think nothing else can be done to ease their suffering. "Pain management is a two-way street," she said. "We have to make sure residents understand that our responsibility is to treat the pain but they have a responsibility to let us know if it's working," she said.
"We teach nurses and aides to carefully watch when interacting with residents to see if anything they're doing might be hurting them," Kelly said. Changes in behavior, body language, facial grimaces and verbal sounds can signal caregivers the person is in pain. Visiting family members also are asked to report any signs of discomfort to staff. "The more people who are looking out for pain, or reporting pain, the better we can treat it," Kelly said.
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