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Q From the experiences of patients, their relatives, and their professional caregivers, what are the processes occurring within a residential palliative care unit?
Grounded theory approach within a symbolic interactionist framework.
2 residential palliative care units in Belgium.
8 patients who were admitted to the palliative care unit with terminal illness and an estimated lifespan of 3 months; 9 relatives of patients (not relatives of the patients interviewed); and 24 team members of the palliative care unit (3 doctors, 1 physiotherapist, 1 pastor, 1 social worker, 11 nurses, 1 nurses’ aide, 2 psychologists, and 4 volunteers).
Data were collected by semistructured indepth interviews lasting 30 minutes to 1.5 hours. Interviews were loosely structured, using an interview guide. Data were also collected from observations of care, team meetings, and analyses of patient records. Data collection and analysis used an iterative process, and questions were added to the interview guide to explore emergent themes. Interviews and team meetings were tape recorded and transcribed verbatim. Interview and team meeting transcripts, field notes, patient records, and observations were coded and analysed. Themes and concepts that reflected the palliative care experiences of patients, relatives, and caregivers were identified. Findings were presented to palliative team members external to the study to check the interpretation of the data.
Findings showed a high correspondence between the experiences of patients, relatives, and caregivers. The specific concept of palliative care shown in this study was a focus on life, with the objective of optimising quality of life. The caregiving process focused on creating opportunities for patients to live and enjoy life as much as possible. Maximising quality of life was ensured by a combination of strategies and conditions.
The caregivers sought to use strategies to create space for living for the patients. These strategies included controlling the symptoms (eg, use of effective pain management), creating a safe environment, alleviating anxiety (eg, helping patients to express feelings of anxiety), accompanying patients in truth (eg, keeping patients and relatives informed about the illness so that decisions about death could be made and lives could be lived as fully as possible), and giving physical care in a respectful manner. Caregivers also searched for ways to help patients fill the space in their lives as meaningfully as possible, using strategies such as regarding the patient as the “norm” (eg, accepting patient needs and wishes), providing creative and active care, providing comprehensive care, and giving physical care. All participants identified several conditions that were essential to good palliative care: sufficient time to get to know patients, caring attitude of caregivers, competence in providing creative and active care, interdisciplinary team work, and characteristics of the setting (small units, homelike infrastructure, and non-hospital environment). These strategies were used to ensure that patients enjoyed life as much as possible even in the face of death. The conditions permitted patients and relatives to experience effective and high quality palliative care.
Palliative care involved a specific concept of care with the central focus on life and the goal of optimising quality of life. The processes of palliative care involved 2 strategies: creating space to live by taking the focus off the illness and filling the space as meaningfully as possible so that patients could fully enjoy life. Certain conditions determined the effectiveness of the strategies and the quality of the palliative care experience.
The study by Cannaerts et al sought to identify the unique elements of palliative care as a way of expanding on the definition of such care. The concepts of “creating space for living” and “filling that space with life” offer a fresh perspective on the importance of ensuring that quality of life is paramount for patients who are dying. The care setting, a palliative care (hospice) residence, had a key role in improving the quality of life for patients and their relatives after they relocated from an acute care hospital. These findings are consistent with those of other studies.1–3
Concern must be expressed, however, about the assumptions and sweeping generalisations made about the present inadequacy of the understanding of palliative care by care providers and its devaluation by society at large. It is not true that the corpus of palliative care literature is more oriented toward dying than it is to maximising the quality of life for the dying. Some of the opinions expressed in the paper were subjective and not supported by the study results. For example, the assertion that “palliative care is a valuable but vulnerable concept” cannot be concluded from the data.
Dame Cecily Saunders was one of the first healthcare professionals to recognise the inadequacy of end of life care in acute care hospitals.4 Hospice residences and palliative care units provide highly specialised care to people who are dying and their families. It is unrealistic to expect that the model of care as described in this paper is transferable to acute hospital settings. Staff-patient ratios are much higher in hospice and palliative care residences, and the therapeutic goals are different in acute care. The same opportunity does not exist for nurses to establish personal relationships with patients in acute hospital settings. Nevertheless, it is important for nurses in all care settings to understand the importance of focusing on the needs of patients and of providing individualised care that recognizes the value of each person.
For correspondence: Ms N Cannaerts, Palliative Support Team, University Hospitals Leuven, Belgium.
Source of funding: not stated.
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