2019; Volume 20, No 8, August
Lessons from the Literature
Under My Microscope
Dr. Tania Pastrana
IAHPC research advisor Dr. Tania Pastrana selects one article from recently published medical literature and describes why it is worthwhile.
An Early Palliative Care Intervention Can Be Confronting But Reassuring: A qualitative study on the experiences of patients with advanced cancer
Monica Fliedner, Sofia Zambrano, Jos MGA Schols, Marie Bakitas, Christa Lohrmann, Ruud JG Halfens, and Steffen Eychmüller. Palliat Med 2019; 33(7): 783-792.
DOI: 0.1177/0269216319847884
Almost 10 years ago, the controlled trial of Temel et al.1 showed that — compared with a standard care group — patients with early palliative care had better quality of life, lower rates of depression, and a 2.7-month survival benefit. It was a great moment for palliative care! Since then, several studies have confirmed these benefits, but few have explored patient perception and experiences of palliative care.
I chose this paper for two reasons: the confirmation of the benefit of palliative care as experienced by patients, but also for its use of qualitative methods for explore outcomes of a randomized controlled trial of a structured early palliative care intervention.
With this study, the author identifies benefits beyond hard criteria, and explores the reach of palliative care as a lived human experience.
Reference
1 Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010; 363(8), 733-742.
Background: Intervention trials confirm that patients with advanced cancer receiving early palliative care experience a better quality of life and show improved knowledge about and use of palliative care services. To involve patients in future health care decisions, health professionals should understand patients’ perspectives. However, little is known about how patients’ experience such interventions.
Aim: To explore advanced cancer patients’ experiences with a structured early palliative care intervention, its acceptability and impact on the patients’ life including influencing factors.
Design: Qualitative content analysis of in-depth, semi-structured interviews.
Setting/participants: Patients with various advanced cancer diagnoses were enrolled in a multicenter randomized controlled trial (NCT01983956), which investigated the impact of “Symptoms, End-of-life decisions, Network, Support,” a structured early palliative care intervention, on distress. Of these, 20 patients who underwent the intervention participated in this study.
Results: Participants received the intervention well and gained a better understanding of their personal situation. Patients reported that the intervention can feel “confronting” but with the right timing it can be confirming and facilitate family conversations. Patients’ personal background and the intervention timing within their personal disease trajectory influenced their emotional and cognitive experiences; it also impacted their understanding of palliative care and triggered actions toward future care planning.
Conclusion: Early palliative care interventions like “Symptoms, End-of-life decisions, Network, Support” may provoke emotions and feel “confrontational” often because this is the first time when issues about one’s end of life are openly discussed; yet, advanced cancer patients found it beneficial and felt it should be incorporated into routine care.
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Media Watch: Spiritual Care
Studies show that both patients and health care professionals view spiritual care as an essential component of treatment and care practice. Despite this, putting spiritual care into practice proves difficult. The articles below are selected from Barry R. Ashpole’s weekly report, Media Watch.
Ritualization as alternative approach to the spiritual dimension of palliative care: A concept analysis
Journal of Religion & Health | Online – 6 April 2019 – The spiritual dimension is considered to be a central component of palliative care (PC). However, healthcare professionals have difficulties incorporating the spiritual dimension into their everyday practice.
A current trend in research and practice is to confine the complex concept of spirituality into models, tools, and methods that focus on intervention. This approach is understandable since it fits in with existing ways of providing health care. However, the core elements of what the spiritual dimension of care should be is at risk of getting lost in the process. The spiritual dimension of care is about being there and connecting to a patient, not about intervening. Therefore, the spiritual dimension of care is connected to all aspects of care.
We propose not to approach spiritual care as a separate activity but as a part of care practice as a whole. Care practices can gain special significance through a process of ritualization. As a result, rituals and ritual-like acts create space for the spiritual dimension of care. In the context of PC, the spiritual dimension of care becomes especially important. When illness cannot be cured, the focus should be on what is of meaning and value in the time that is left.
DOI: 10.1007/s10943-019-00792-z
Case & Commentary: How should physicians respond to patient requests for religious concordance?
AMA Journal of Ethics , 2019;21(6):E485-E492. In which ways and in which circumstances should institutions and individual physicians facilitate patient-physician religious concordance when requested by a patient? This question suggests not only uncertainty about the relevance of particular traits to physicians’ professional roles but also that medical practice can be construed as primarily bureaucratic and technological. This...is misleading.
The clinical encounter is steeped in and inevitably shaped by the values of both physicians and patients, and concordance is always a question of degree. Physicians who resist requests for concordance may have uncritically accepted a role as an anonymous functionary working in a culture of no culture. We contend that this posture will sometimes prevent a physician from recognizing the goods and values at stake in a request for concordance and in the medical decisions that patients face. This is not to say that all requests should be satisfied, but it is to argue for cultural humility rather than a presumption of neutral cultural competence in assessing such requests... As Tervalon and Murray-García note, such humility requires that we are “flexible and humble enough to say that [we] do not know when [we] truly do not know and to search for and access resources that might enhance immeasurably the care of the patient.”
Occasionally, the best resources we have may be our colleagues, who—because of their concrete particularity—may be able to better provide what the patient needs. A diverse community of physicians makes such accommodations possible; physicians with specific traditions of thought and practice are sometimes best situated to bring to bear what medicine offers and to do so in ways that fit the needs of patients with similar traditions of thought and practice.
DOI: 10.1001/amajethics.2019.485
Media Watch, published by Barry R. Ashpole, a Canadian communications consultant and educator, monitors the literature and the lay press on issues specific to the quality of end-of-life care. It is international in scope and distribution. View current and back issues here.