Discharging Women with Advanced Ovarian Cancer on Home Parenteral Nutrition: Making and Implementing the Decision.

Increasingly, patients with advanced ovarian cancer in bowel obstruction are receiving home parenteral nutrition (HPN). Little is known about making and implementing the decision. This study explored the decision-making process for HPN and investigated the barriers and facilitators to implementation. This was a qualitative study underpinned by phenomenology involving 93 longitudinal in-depth interviews with 20 patients, their relatives and healthcare professionals, over 15 months. Participants were interviewed a maximum of four times. Interview transcripts were analysed thematically as per the techniques of Van Manen. We found variance between oncologists and patients regarding ownership of the HPN decision. The oncologists believed they were engaging in a shared decision-making process. However, patients felt that the decision was oncologist-driven. Nevertheless, they were content to have the treatment, when viewing the choice as either HPN or death. In implementing the decision, the principal mutable barrier to a timely discharge was communication difficulties across professional disciplines and organisations. Facilitators included developing a single point-of-contact between organisations, improving communication and implementing standardised processes. Oncologists and patients differ in their perceptions of how treatment decisions are made. Although patients are satisfied with the process, it might be beneficial for healthcare professionals to check patients' understanding of treatment.

Palliative home parenteral nutrition in patients with ovarian cancer and malignant bowel obstruction: experiences of women and family caregivers.

BACKGROUND: Malnutrition is a problem in advanced cancer, particularly ovarian cancer where malignant bowel obstruction (MBO) is a frequent complication. Parenteral nutrition is the only way these patients can received adequate nutrition and is a principal indication for palliative home parenteral nutrition (HPN). Giving HPN is contentious as it may increase the burden on patients. This study investigates patients' and family caregivers' experiences of HPN, alongside nutritional status and survival in patients with ovarian cancer and MBO. METHODS: This mixed methods study collected data on participant characteristics, clinical details and body composition using computed tomography (CT) combined with longitudinal in-depth interviews underpinned by phenomenological principles. The cohort comprised 38 women with ovarian cancer and inoperable MBO admitted (10/2016 to 12/ 2017) to a tertiary referral hospital. Longitudinal interviews (n = 57) were carried out with 20 women considered for HPN and 13 of their family caregivers. RESULTS: Of the 38 women, 32 received parenteral nutrition (PN) in hospital and 17 were discharged on HPN. Nutritional status was poor with 31 of 33 women who had a CT scan having low muscle mass, although 10 were obese. Median overall survival from admission with MBO for all 38 women was 70 days (range 8-506) and for those 17 on HPN was 156 days (range 46-506). Women experienced HPN as one facet of their illness, but viewed it as a "lifeline" that allowed them to live outside hospital. Nevertheless, HPN treatment came with losses including erosion of normality through an impact on activities of daily living and dealing with the bureaucracy surrounding the process. Family caregivers coped but were often left in an emotionally vulnerable state. CONCLUSIONS: Women and family caregivers reported that the inconvenience and disruption caused by HPN was worth the extended time they had at home.

Percutaneous venting gastrostomy/gastrojejunostomy for malignant bowel obstruction: a qualitative study.

OBJECTIVE: Malignant bowel obstruction (MBO) is a complication of advanced malignancy and is associated with a short prognosis. MBO can infrequently be reversed by surgery or stenting. The focus of treatment is usually symptomatic management, of which percutaneous venting gastrostomy/gastrojejunostomy (PVG) is one consideration. There is little data considering the impact of PVG on quality of life; we therefore aimed to explore this. METHODS: We identified patients with a PVG inserted for MBO and those who consented to participate were interviewed. The interviews were audio recorded, transcribed and analysed using Framework. Alongside patient interviews, a data collection tool was designed and used to record patient demographics and medical information, enabling us to contextualise individual patients' experiences. RESULTS: 11 patients were interviewed and 10 patients' data were analysed (1 patient withdrew). No patients regretted having a PVG and many benefitted symptomatically and psychosocially. Challenges encountered included practical issues, pain and PVG tube complications. CONCLUSIONS: The analysis provided a detailed insight into the impact of PVG insertion and demonstrated that each patient's experience is shaped by a complex interplay of individual factors, thereby highlighting the need to improve referral criteria and individualise patient selection. Other service improvements include enhancing information provision for patients and training for healthcare professionals, thus aiming to mitigate the challenges experienced. Our study is the first in-depth exploration of patients' experiences of PVG at a tertiary cancer centre. Ensuring that the insights from this study are fed back to guide future service provision is critical in enhancing future patient experiences.

Home parenteral nutrition for people with inoperable malignant bowel obstruction.

BACKGROUND: People with advanced ovarian or gastrointestinal cancer may develop malignant bowel obstruction (MBO). They are able to tolerate limited, if any, oral or enteral (via a tube directly into the gut) nutrition. Parenteral nutrition (PN) is the provision of macronutrients, micronutrients, electrolytes and fluid infused as an intravenous solution and provides a method for these people to receive nutrients. There are clinical and ethical arguments for and against the administration of PN to people receiving palliative care. OBJECTIVES: To assess the effectiveness of home parenteral nutrition (HPN) in improving survival and quality of life in people with inoperable MBO. SEARCH METHODS: We searched the following electronic databases: Cochrane Central Register of Controlled Trials (CENTRAL; 2018, Issue 1), MEDLINE (Ovid), Embase (Ovid), BNI, CINAHL, Web of Science and NHS Economic Evaluation and Health Technology Assessment up to January 2018, ClinicalTrials.gov (http://clinicaltrials.gov/) and in the World Health Organization (WHO) International Clinical Trials Registry Platform (ICTRP) search portal (http://apps.who.int/trialsearch/). In addition, we handsearched included studies and used the 'Similar articles' feature on PubMed for included articles. SELECTION CRITERIA: We included any studies with more than five participants investigating HPN in people over 16 years of age with inoperable MBO. DATA COLLECTION AND ANALYSIS: We extracted the data and assessed risk of bias for each study. We entered data into Review Manager 5 and used GRADEpro to assess the quality of the evidence. MAIN RESULTS: We included 13 studies with a total of 721 participants in the review. The studies were observational, 12 studies had only one relevant treatment arm and no control and for the one study with a control arm, very few details were given. The risk of bias was high and the certainty of evidence was graded as very low for all outcomes. Due to heterogeneity of data, meta-analysis was not performed and therefore the data were synthesised via a narrative summary.The evidence for benefit derived from PN was very low for survival and quality of life. All the studies measured overall survival and 636 (88%) of participants were deceased at the end of the study. However there were varying definitions of overall survival that yielded median survival intervals between 15 to 155 days (range three to 1278 days). Three studies used validated measures of quality of life. The results from assessment of quality of life were equivocal; one study reported improvements up until three months and two studies reported approximately similar numbers of participants with improvements and deterioration. Different quality of life scales were used in each of the studies and quality of life was measured at different time points. Due to the very low certainty of the evidence, we are very uncertain about the adverse events related to PN use. Adverse events were measured by nine studies and data for individual participants could be extracted from eight studies. This revealed that 32 of 260 (12%) patients developed a central venous catheter infection or were hospitalised because of complications related to PN. AUTHORS' CONCLUSIONS: We are very uncertain whether HPN improves survival or quality of life in people with MBO as the certainty of evidence was very low for both outcomes. As the evidence base is limited and at high risk of bias, further higher-quality prospective studies are required.

Nutrition in palliative and end-of-life care.

Recent publications regarding nutrition highlight the importance of eating and drinking for patients and their family/carer. This article focuses on the importance of nutrition and early nutritional intervention, giving guidance for nurses when caring for patients with palliative and end-of-life care needs when the focus of nutrition centres around symptom control and quality of life. Clear, sensitive communication, with agreed nutritional goals set with the patient and their family/carer, and regular review and adaptation throughout any 'cancer journey' are paramount in order to minimise anxiety and distress. A multidisciplinary team approach is often required in order to support ethical decision-making and to assist in devising an individualised nutritional management plan. Although this article aims to focus upon the nutritional aspects associated with advancing cancer, many aspects will clearly be transferrable to patients with other life-limiting illnesses such as dementia and advanced cardiac and pulmonary disease.

Evidencing cost efficiencies in specialist palliative care.

In this difficult economic climate there is an increasing need in health care not only to measure improvements in quality of care but also to evidence cost efficiencies in services. Although specialist palliative care (SPC) has historically been viewed as synonymous with provision of quality care for patients, this seems unlikely to be viewed in the future as an inherent guarantee of optimum efficiency. It looks as though the SPC fraternity is going to have to quantify its value for money.