Unmet needs of people with end-stage chronic obstructive pulmonary disease: recommendations for change in Australia.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is an increasing cause of mortality. However, people with COPD are unlikely to receive care that meets the needs of themselves or their carers at the end of life. AIMS: To explore the needs of people with end-stage COPD in South Australia and develop recommendations for a model of care. METHODS: Three related studies were undertaken: in Study 1, 15 people with advanced COPD and their carers were interviewed twice, 6 months apart; Study 2 investigated views of an Expert Panel and Study 3 conducted focus groups and interviews with service providers and community groups to examine service availability and accessibility. RESULTS: This project demonstrated that the needs of people with COPD are not being met. There was an absence of a coordinated pathway for support. Care was fragmented, episodic and reactive. The role of carers was poorly recognised. Health professionals identified the lack of a clear transition to an end-stage and significant barriers to obtaining support for activities of daily living. Communication issues were identified in all studies, including the absence of advance care planning conversations. CONCLUSIONS: A flexible model of care is needed that assists people with COPD to navigate the health system. This should be patient centred and coordinated across primary, acute and community sectors. Neither respiratory nor palliative care services alone can adequately support people with COPD. The integration of a multidisciplinary palliative approach within a chronic disease management strategy will be central for the best care for people living with advanced COPD.

Palliative venting gastrostomy in malignant intestinal obstruction.

This retrospective clinical study reports on the experience of palliative venting gastrostomy (PVG) in an integrated acute teaching hospital and hospice-based palliative care service over a seven-year period (1989-97). PVG was performed for 51 patients with refractory nausea and vomiting resulting from varying degrees and levels of persisting or intermittent malignant bowel obstruction. There were 32 females and 19 males; the mean age was 61 years (range 25-86 years). All patients had advanced and incurable cancer with intra-abdominal spread, originating from the following primary sites: colon and rectum (27), ovary (16), breast (2), pancreas (2), and other (4). The venting gastrostomy tube was inserted endoscopically by a railroading technique in 46 patients (using a 16- to 20-French Dobhoff PEG tube), at open laparotomy in four cases and under radiological (abdominal computerized tomography) control in one case. Endoscopic insertion was attempted and abandoned for technical reasons in a further two cases. The median survival of all 51 patients from the time of gastrostomy insertion was 17 days (range 1-190). In 47/51 (92%), the symptoms of nausea and vomiting were relieved by the procedure, and these patients experienced restoration of some level of oral soft food and fluid intake. Twenty patients were discharged home, and six died at home. In a small group of highly selected patients, for whom pharmacological measures failed to palliate the effects of malignant bowel obstruction, PVG was shown to be a safe and effective means of abolishing or substantially improving vomiting. Provided that the intervention is appropriate to the given clinical situation and acceptable to the patient, it should be considered.