Best-practice care for people with advanced chronic obstructive pulmonary disease: the potential role of a chronic obstructive pulmonary disease care co-ordinator.

OBJECTIVE: To explore service availability and accessibility for people with advanced chronic obstructive pulmonary disease (COPD) and their carers and strategies for improvement, including the potential role of a COPD care co-ordinator in ensuring best-practice care in the Australian context. METHODS: This qualitative study used focus groups and interviews with health professionals, carers and consumers to explore gaps and restrictions in services, barriers to access and the functioning of services. Data were analysed deductively. RESULTS: Key themes arising from the data included difficulties around access to care, lack of continuity of care, poor care co-ordination, the need for active disease management as well as supportive care, and poor communication. A COPD care co-ordinator was suggested as an effective strategy for ensuring best-practice care. CONCLUSIONS: People with advanced COPD often have difficulty navigating the acute, primary and community care systems to deal with the multiple services that they may require. Lack of communication between health professionals and services is frequently a significant issue. A COPD care co-ordinator, encompassing advanced nursing skills, could ensure that care is centred on the needs of the person and their carer and that they receive continuing, appropriate and accessible care as they approach the end of their life.

The experience of patients with advanced chronic obstructive pulmonary disease and advance care-planning: A South Australian perspective.

Advance care-planning conversations with people who have chronic obstructive pulmonary disease (COPD) are important because of the severity of the disease and the unpredictable timing of death. Advance care-planning is a process involving conversations about future wishes, including end-of-life care and the appointment of a substitute decision-maker. This qualitative research explored issues relating to end-of-life decisions with 15 individuals and their carers living in the community who had severe COPD. Findings indicated that, although patients and carers would welcome the opportunity to discuss end-of-life decisions, almost no conversation about care-planning had been initiated by health professionals with any of the participants. It also demonstrated that professional support is required to assist with advance care-planning and the completion of the legal advance directive documents.

Talking to patients about death and dying.

INTRODUCTION: Talking about death and dying, either with patients terminally ill or well, presents challenges for the general practitioner. There are few Australian educational resources and little Australian research into this area. METHODS: We undertook two focus groups, an interview process, and a final consultation with palliative care experts and GPs. RESULTS: General practitioners felt they needed support and education in talking about death and dying. This is separate from discussions about 'Advanced Health Care Directives'. General practitioners were open to learning new ways to help patients and families approach dying, but require support and education around initiating discussions, asking the right questions and accessing services. Participating GPs emphasised the importance of utilising palliative care supports and resources to provide ongoing spiritual and physical care. Many were particularly concerned with access to support for dying patients for both indigenous patients and those from other cultures. Advance Health Care Directives were regarded by participating GPs to be tools to facilitate a discussion around death and dying, rather than their primary purpose. DISCUSSION: We developed a booklet to provide practical, useful guidelines for GPs in their daily practice.

Subcutaneous fentanyl and sufentanil infusion substitution for morphine intolerance in cancer pain management.

Eleven patients with cancer pain in a palliative care and chronic pain service required cessation of morphine due to unacceptable opioid side effects. In this retrospective study fentanyl was evaluated as a second-line subcutaneously infused opioid. Starting doses ranged from 100 to 1000 micrograms/24 h, and the duration of fentanyl infusion was 3-70 days. The clinically derived mean relative potency of fentanyl to morphine infusions was 68:1 (SD +/- 23; range: 15-100), and we now recommend cautious dose conversion at an approximate equivalence of 150-200 micrograms fentanyl for 10 mg morphine in non-opioid naive chronic cancer pain patients. All patients demonstrated an improvement in the adverse effect(s) for which the change in opioid was undertaken. Adequate pain relief was achieved in all but 1 patient with mixed nociceptive and neuropathic pelvic pain for whom an epidural infusion of a local anaesthetic/opioid mixture was required. Fentanyl was changed to the more potent synthetic opioid sufentanil in 2 patients for whom the fentanyl dose necessitated too large a volume for the portable syringe driver in use. The clinically derived sufentanil to fentanyl relative potencies were 24:1 and 16:1, respectively. This achieved good analgesia and maintained the favourable side-effect profile seen with fentanyl. Subcutaneous infusion appears to be a safe and viable route of fentanyl delivery, and provided effective analgesia with a low incidence of adverse effects in this small selected group of patients who were intolerant of subcutaneous morphine. We suggest a trial of subcutaneous fentanyl for selected patients who have intractable adverse effects on morphine, and it is now the second-line infusable opioid in our service. Further prospective evaluation of the role of these two synthetic mu opioid agonists in palliative care practice is warranted, as part of an evolving picture of variation in opioid side-effect profile seen with different drugs within the class.

Description of a mechanistic approach to pain management in advanced cancer. Preliminary report.

A mechanistic approach to advanced cancer pain management is proposed, based on the clinically perceived anatomical and pathophysiological mechanisms of pain generation. It is an extension of the World Health Organisation (WHO) analgesic ladder in which severity of pain is the principal determinant of analgesic choice. The mechanistic categories are: superficial somatic, deep somatic, visceral and neurogenic (mixed or pure, i.e., nociceptive component present or absent). Allocation of pain to the different categories is based on clinical history, physical findings and investigations to establish the site and extent of active primary or metastatic tumor deposits, and evidence of previous response to medication. Drug choice sequence is determined by the dominant pain mechanism judged to be present and not the severity of the pain. In order to describe this approach, mechanisms of pain, disease distribution and drug treatment have been analysed in the first 20 consecutive patients who consented to enter a longitudinal pain description and evaluation study on admission to an inpatient hospice unit. Despite a high exclusion rate from research standard monitoring due to severity of illness and related factors, the majority of eligible patients approached to enter the study did so, and the pain scoring was well tolerated. The implications of this for future research and clinical practice are discussed. In 6 patients only 1 pain mechanism was identified (visceral 4, deep somatic 2). Two mechanisms were present in 8 patients and 3 mechanisms in 6 patients. The deep somatic mechanism was identified in 15 patients, visceral mechanism in 13, neurogenic in 10 and superficial somatic in 2.(ABSTRACT TRUNCATED AT 250 WORDS)