Michelle Gold

Palliative and supportive care needs of patients with high-grade glioma and their carers: A systematic review of qualitative literature

OBJECTIVE Patients diagnosed with primary malignant glioma (PMG) face substantial challenges with poor prognosis, high symptom burden and care needs. This study aims to collate current literature detailing the supportive and palliative care needs of patients with PMG and their carers, and to subject it to a novel approach of formal evaluation. METHODS Medline, EMBASE, CINAHL, PsychInfo were searched with core concepts: (1) glioma, (2) high-grade disease, and (3) palliative and supportive care needs. A narrative synthesis approach was undertaken including a quality appraisal of the 21 included studies. RESULTS Key themes related to the need for consistent well-delivered information around disease sequelae, treatment, and resources available; health service needs including a key professional identified to coordinate care; the need for psychological and social supports, and clear avenues of communication with treating professionals. CONCLUSION The literature remains limited in the number and quality of evidence with two level I, eight level II, and eleven level III studies. The findings call for improved information, communication and support practices to address the complexity and breadth of needs. PRACTICE IMPLICATIONS Specialised and individually tailored information, attention to clear, consistent communication and support practices should be incorporated into a future needs-based model of care.

End of life care in CF: Patients, families and staff experiences and unmet needs

UNLABELLED Palliative care is not well understood in CF. Unmet needs of patients with CF, their families and staff were explored. METHOD Focus groups and interviews with forty-two participants (12 patients, 10 family members and 20 staff) were conducted at a university teaching hospital. RESULTS Thematic analysis identified six themes. Knowledge: Patients and families felt their knowledge of palliative care was limited. Psychological frame: Hope and a positive psychological frame was essential to coping, however, this was a hindrance to the acquisition of information. Denial as a coping strategy resulted in a lack of preparation for declining health. Treating team: High expectations were placed on the treating team. Psychosocial support was valued. Communication: Timing, honest and clear discussions were important. Engagement with palliative care service: Increased palliative care. Unmet needs: The emotional burden of caring for dying patients/families and balancing hope against death was a challenge. CONCLUSIONS Opportunities exist to improve care.

Is honesty always the best policy? Ethical aspects of truth telling

Physicians have not always believed that patients should be told of their diagnosis. Modern, western medical practice places a high value on providing accurate, truthful information to patients. This is heavily influenced by the commitment to patient autonomy and participation in decision‐making. However, situations arise where truth telling is difficult to achieve, creating a dilemma for the treating doctor. This article discusses aspects of truth telling in a multicultural society. (Intern Med J 2003; 33: 578−580)

Negotiating hope with chronic obstructive pulmonary disease patients: a qualitative study of patients and healthcare professionals

Background:  The information needs of patients with chronic obstructive pulmonary disease (COPD) towards the end of life are poorly understood.

End-of-life care in adults with cystic fibrosis.

BACKGROUND Cystic fibrosis (CF) is a life-limiting congenital disease, with most patients dying at a young age of progressive lung disease. Lung transplantation offers hope for many but may not occur. There is little to guide the provision of palliative care to this young population who maintain hope in the possibility of lung transplantation. METHODS To inform the development of an appropriate model of palliative care, a medical record review of CF patients dying within a 5-year period without lung transplantation was undertaken. The aspects of care that were preventative, therapeutic, or palliative were quantified. RESULTS Of the 20 records studied, all died in hospital. Only 15% of patients had a do-not-resuscitate order agreed to more than 1 week prior to death, increasing to 90% at the time of death (median of 2 days before death). Opioids were prescribed for 1 patient (5%) at 1 week prior to death, increasing to 85% of patients in the last 24 hours of life (median of 36 hours before death). During the last 24 hours of life, intravenous antibiotics continued in 85%, and assisted ventilation in 90% of subjects. CONCLUSION We conclude that the circumstances surrounding the death of patients with CF holds challenges for their effective palliative care. CF patients continue life prolonging and preventative treatments until the last hours of life. There is an urgent need to examine palliative care approaches that may usefully coexist with maintaining transplantation options in the end-of-life care of this population.

Anger in palliative care: a clinical approach

Anger in patients and families is a common problem in the care of persons with advanced disease. Whereas it is widely accepted that anger may be a justifiable reaction to significant illness and loss, it frequently creates difficulties for the doctors involved in care. In particular, there is often a personal impact on the doctor at whom anger is directed. This paper examines results of qualitative research with palliative care workers in the context of the broader published literature and the authors’ clinical experiences. The ability to interact effectively with angry patients is a skill that is often learned with experience and is extremely useful in both transforming the patients’ reaction into a more creative emotion and in developing a therapeutic relationship. Despite conscientious efforts, however, a few patients continue to be angry. A practical approach to anger, useful for the clinician directly involved in care, is outlined along with some strategies to adopt in the face of persistent anger.

I'm just waiting…: an exploration of the experience of living and dying with primary malignant glioma

PurposeReferral to supportive and palliative care services for people with high-grade primary malignant glioma (PMG) often occurs late in the illness course, despite significant care needs and overall poor prognosis. This study aimed to understand patient experience at the end of life and document supportive and palliative care needs.MethodsA qualitative study was conducted involving ten PMG patients who were at different stages in the illness course including the end of life and had varying levels of physical and cognitive function. Consecutive, eligible patients attending neurosurgery, oncology, and palliative care services of two metropolitan hospitals were recruited. In-depth interviews explored supportive and palliative care needs across the disease trajectory. Interviews were analysed independently by three investigators consistent with a grounded theory approach, and emerging ideas were compared and refined to define key patient experiences.ResultsDespite the medical treatment and supportive care available, there remains a gap in services addressing complex existential and psychosocial needs that were markedly valued by patients. Patient experience was characterised by a pervasive loss of all that encompassed their former sense of self and a focus on immediate needs.ConclusionsPatients in this study had substantial needs, which were often not shared and not addressed by the current medical system of care. An improved multidisciplinary care model is indicated, which proactively (1) engages care coordination and advocacy; (2) minimises patients’ sense of waiting and uncertainty through mapping out a plan, including involvement of palliative care in a timely fashion; and (3) actively invites discussion around goals and preferences for care to promote patients’ sense of self.

The challenges and suffering of caring for people with primary malignant glioma: qualitative perspectives on improving current supportive and palliative care practices

Objectives Carers of patients with high-grade primary malignant glioma (PMG) are known to face extraordinary challenges, as they care for patients with multiple profound and often devastating physical, cognitive and behavioural changes. This study aimed to understand the supportive and palliative care needs in this setting, with a particular focus upon care at the end-of-life, which has hitherto been neglected. Methods This prospective qualitative study undertook in-depth interviews with 23 current and bereaved carers of adults with PMG. Carers were recruited from outpatient and inpatient services of two Australian metropolitan hospitals, including neurosurgery, oncology and palliative care. Thematic analysis was conducted by three independent researchers, using methods informed by grounded theory. Results Carers described significant needs in relation to three distinct domains: the challenge of caring; the lack of support available to carers and the suffering of caring. The need for care coordination was highlighted as it may enable a series of recommendations for improved care, including: navigation between health providers, individualised, staged information; routine, proactive telephone needs-assessment and emotional support; and early routine integration of palliative care services. Conclusions The results of this study shed new light on providing timely information and palliative care to support carers. We call for health services to reconsider the current medical model for this patient group, where patients are the centre of care, information and support, towards a more collaborative model which places carers and patients into a partnership.

Second medical opinions: the views of oncology patients and their physicians

IntroductionSecond medical opinions (SMOs) are common in oncology practice, but the nature of these consultations has received relatively little attention. This study examines the views of patients with advanced cancer and their physicians of SMOs.MethodParallel, concurrent surveys were developed for patients and physicians. The first was distributed to outpatients with advanced cancer-attending specialist clinics in an Australian quaternary hospital. The second survey, developed on the basis of results of exploratory interviews with medical oncologists, was distributed to medical oncologists in Australia.ResultsSeventeen of fifty two (33%) patients had sought a SMO, most commonly prompted by concerns around communication with their first doctor, the extreme and desperate nature of their medical condition and the need for reassurance. Most (94%) patients found the SMO helpful, with satisfaction related to improved communication and reassurance. Patients were concerned that seeking a second medical opinion may affect their relationship with their primary doctor. Most physicians (82%) reported seeing between one and five SMO per month, with patients being motivated by the need for additional information and reassurance. Physicians regarded SMO patients as having greater information needs (84%), greater psychosocial needs (58%) and requiring more of the physicians time and energy (77%) than other patients.ConclusionSMOs are common in cancer care with most patients motivated by the need for improved communication, additional information and reassurance. Physicians identify patients who seek SMOs as having additional psychosocial needs compared with other oncology patients.

Palliative care for patients with chronic obstructive pulmonary disease: exploring the landscape

Patients with chronic obstructive pulmonary disease experience a substantial symptom burden, high levels of psychosocial need and significant mortality. This epidemiological study reveals that the majority of patients are cared for in the public hospital system (64%) and generally die in hospital (72%) with a number of identifiable predictors of 6‐month mortality. Our results suggest that palliative care services need to be redirected from a community‐based admission focus to a model that is responsive to emergency and acute care hospital systems.