Jennifer Philip

Concurrent validity of the modified Edmonton Symptom Assessment System with the Rotterdam Symptom Checklist and the Brief Pain Inventory

Abstract As part of a longitudinal prospective study we sought a self-completed instrument of symptom assessment suitable for a population of cancer patients who were receiving palliative therapy. The modified Edmonton Symptom Assessment System (ESAS) is such an instrument, but it required validation for this population. This study represents a validation of the modified ESAS with the Rotterdam Symptom Checklist and the Brief Pain Inventory – two instruments widely used in patients receiving palliative therapy for cancer. We conclude that the modified ESAS is a valid, self-administered instrument to assess symptoms for patients from differing palliative care settings.

Palliative Care and the Hemato-Oncological Patient: Can We Live Together? A Review of the Literature

Current evidence suggests that patients with hematological malignancies less frequently access palliative care services, and for those who do, this tends to occur later in their illness than their counterparts with solid malignancies. These patients are also more likely to die in hospital following escalating interventions. This approach to care that considers palliative care referral after most treatments are exhausted has implications for the quality of palliative care intervention possible. An episodic approach engaging palliative care according to needs rather than prognosis may be more valuable. The successful integration of palliative care into the care of hemato-oncological patients requires recognition by palliative care physicians of the particular issues encountered in care, namely, the difficulty in individual prognostication; ongoing therapeutic goals of curability or long term survival; the technical nature and complications of treatment; the speed of change to a terminal event; the need for pathology testing and transfusion of blood products as death approaches; the potentially reversible nature of intercurrent events such as infection; and the long relationships that develop between patients and their hematologists. Meanwhile, hematologists should be aware of the benefits of palliative care earlier in an illness trajectory and that palliative care does not equate to terminal care only. This review summarizes current practices and barriers to referral, and suggests recommendations for collaborative care and further research in the palliation of hemato-oncological patients. In doing so, it highlights to palliative care and hematology physicians how successful integration of their disciplines may improve their care of these patients.

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.

Care of the dying cancer patient in the emergency department: findings from a National survey of Australian emergency department clinicians

Patients with cancer are presenting to emergency departments (ED) for end‐of‐life care with increasing frequency. Little is known about this experience for patients and ED clinicians in Australia.

The role of total parenteral nutrition for patients with irreversible bowel obstruction secondary to gynecological malignancy

Two patients received total parenteral nutrition (TPN) to manage irreversible bowel obstruction secondary to gynecological malignancy. The use of TPN prolonged their lives considerably, but also led to complications, both from the TPN and from the natural progression of the cancers. Although TPN is increasingly considered as a possible treatment for selected patients with malignant bowel obstruction who are not suitable for surgery, the literature regarding this practice is conflicting. It should be considered only in those patients with good performance status, and then after careful attention to not only the likely medical and symptomatic outcomes, but also the ethical implications of such a management strategy.

Caught in the middle: tensions around the emergency department care of people with advanced cancer.

People with advanced cancer frequently present to hospital EDs. International studies report conflicting attitudes towards providing such care and difficulties with communication. The experience of Australian clinicians, however, is not described.

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.