Catriona Mayland

Vitamin C deficiency in cancer patients.

Purpose: To assess the prevalence of vitamin C deficiency within a group of hospice patients. To assess the relationship between plasma vitamin C, dietary intake and subsequent survival. Methods: Patients with advanced cancer were recruited from a large hospice. Data were collected on demographic details, physical functioning and smoking history. An estimate was obtained of the number of weekly dietary portions consumed equivalent to 40 mg of vitamin C, the recommended daily intake. Plasma vitamin C was measured by a single blood sample. The study had local ethical approval. Results: Fifty patients were recruited (mean age 65.2 years, 28 female). Plasma vitamin C deficiency was found in 15 (30%). Dietary intake of vitamin C was correlated to plasma vitamin C (r=0.518, PB0.0001). Low dietary intake, low albumin, high platelet count, high CRP level and shorter survival were all significantly associated with low plasma vitamin C concentrations (B11 μmol/L). There was no correlation between plasma vitamin C, smoking history or physical functioning. Conclusion: Vitamin C deficiency is common in patients with advanced cancer and the most important factors determining plasma levels are dietary intake and markers of the inflammatory response. Patients with low plasma concentrations of vitamin C have a shorter survival.

How well do current instruments using bereaved relatives’ views evaluate care for dying patients?:

Background: Providing good quality of care for dying patients and their families has been highlighted as a national priority in the UK. Defining and measuring the quality of this care is therefore important. Using the views of patients has practical and ethical difficulties, so an alternative approach is to seek the views of bereaved relatives and close friends after the patients’ death. Aim: To identify and critically appraise instruments previously used with bereaved relatives to measure the quality of care for dying patients and the level of support provided to the family. Methods: A literature review was undertaken using Medline, Cinahl, Embase and AMED databases from 1985 to 2005. The search strategy was based on the following headings: quality of care, dying, assessment and relatives. Key criteria were set for the appraisal of each instrument. Results: Analysis of the 229 articles identified from the searches, yielded seven instruments used with bereaved relatives to assess the quality of ‘care for the dying’. Discussion: Each of these instruments was carefully constructed and all but one had clear documentation of validity and reliability measures. Two instruments used ‘satisfaction’ as an outcome measure, limiting their ability to discriminate between adequate and excellent care. Only one instrument was developed in the UK making it more ‘user-friendly’ for direct use in the UK. Conclusion: None of the instruments in their current format could comprehensively evaluate ‘care for the dying’ in the UK healthcare setting. We would propose to develop and validate a tool specifically assigned for this purpose.

Does the ‘Liverpool Care Pathway' facilitate an improvement in quality of care for dying cancer patients?

Background:The Liverpool Care Pathway for the Dying Patient (LCP) aims to transfer hospice principles of care for dying patients to other health-care sectors. This post-bereavement survey explored the LCP’s effectiveness in improving quality of care for cancer patients.Methods:Postal self-completion questionnaires were sent to 778 next-of-kin to consecutive deceased patients who had died an ‘expected’ cancer death in a hospice and acute tertiary hospital.Results:Following exclusions (n=53), 255 of the 725 next-of-kin agreed to participate (35.2% response rate). Overall hospice participants reported the best quality of care, and hospital participants, for whom care was not supported by the LCP, reported the worst quality of care. Multivariate analysis showed the hospice was an independent predictor for patients being treated with dignity (OR 8.46) and receiving adequate family support (OR 7.18) (P<0.0001). Care supported by the LCP and the hospital specialist palliative care team were both associated with good family support, but neither was an independent predictor.Conclusions:From the bereaved relatives’ perspective, within the hospital, the LCP is effective in improving specific aspects of care, such as symptom control for dying patients. Further improvement is required, however, to attain the hospice standard of care.

How should we measure emesis in palliative care

There are many assessment tools available to measure emesis. This Association for Palliative Medicine Science Committee Task Group undertook a review of the validity and suitability of the assessment tools available to measure nausea, vomiting and retching within a palliative care population. Electronic databases were searched from 1970 to 2004. Both specific and global tools were identified and reviewed for their validity, reliability and suitability for our patient population where coexisting cognitive impairment and significant co-morbidities may make accurate assessment of symptoms difficult. Within specific palliative care scenarios namely daily clinical assessment, prevalence surveys and randomized controlled trial settings, the team reached a consensus on which tools had the greatest evidence to recommend them, either for immediate use or for further validation studies. An ideal measurement tool for the assessment of nausea, vomiting and retching has not yet been developed. Palliative Medicine 2007; 21 : 369—383

Assessing quality of care for the dying: The development and initial validation of a postal self-completion questionnaire for bereaved relatives

Background: Evaluating ‘quality of care for the dying’ from the patients’ perspective has practical and ethical difficulties: an alternative is to use bereaved relatives’ views as ‘proxy’ measures. Currently, within the United Kingdom, there is no validated instrument which specifically examines quality of care in the last days of life or the impact of the Liverpool Care Pathway (LCP) for the Dying Patient. Aim: To develop and validate a questionnaire for use with bereaved relatives assessing the quality of care for patients and families in the last days of life and the immediate period after the bereavement. Design: The instrument, ‘Evaluating Care and Health Outcomes – for the Dying’ (ECHO-D), was developed in four distinct phases: 1. Question formulation, 2. Expert panel review (n = 6), 3. Wider audience review (n = 25), 4. Pilot, including cognitive pre-testing interviews and preliminary test–retest reliability assessment with bereaved relatives (n = 80) Setting: The study was conducted within a hospice and an acute hospital involving healthcare professionals, lay members and bereaved relatives. Results: The systematic and robust process of questionnaire development generated evidence for ECHO-D’s face and content validity. Response rate for the pilot stage with bereaved relatives, however, was comparatively low (23.4%). Test–retest analysis from the pilot showed moderate or good stability for 13 out of 17 key questions, although small sample numbers limited the interpretation. Conclusions: ECHO-D is the first instrument specifically to assess ‘quality of care for the dying’, focussing on the last days of life, and has direct links with the use of the LCP Programme.

Variation in attitudes towards artificial hydration at the end of life: a systematic literature review.

Purpose of reviewArtificial hydration in end-of-life care is an important and emotive topic that frequently raises concerns from patients, relatives and healthcare professionals (HCPs). The aim of this review was to give an overview of currently available evidence around opinions and attitudes towards artificial hydration at the end of life. Recent findingIn total 11 studies reported on opinions towards providing artificial hydration, nine studies reported on attitudes towards the effect of artificial hydration on quality-of-life and four studies towards its effect on survival. Reported percentages of respondents in favour of providing artificial hydration at the end of life varied from 22 to 100% and for nonprovision from 0 to 75%. One-third of the general public has been found to think that artificial hydration improves comfort, while among patients a majority feels it can have a physical or psychological benefit. HCPs were found to be less optimistic: 1–43% thought patients benefit from artificial hydration at the end of life. HCPs mostly agree artificial hydration does not prolong survival, although up to 89% of patients expect it does. SummaryOpinions and attitudes towards the use of artificial hydration at the end of life vary. Communication of this imperative topic in end-of-life care is important for better care and should be research-based.

Hydration in Advanced Cancer: Can Bioelectrical Impedance Analysis Improve the Evidence Base? A Systematic Review of the Literature

CONTEXT Decisions surrounding the administration of clinically assisted hydration to patients dying of cancer can be challenging because of the limited understanding of hydration in advanced cancer and a lack of evidence to guide health care professionals. Bioelectrical impedance analysis (BIA) has been used to assess hydration in various patient groupings, but evidence for its use in advanced cancer is limited. OBJECTIVES To critically appraise existing methods of hydration status assessment in advanced cancer and review the potential for BIA to assess hydration in advanced cancer. METHODS Searches were carried out in four electronic databases. A hand search of selected peer-reviewed journals and conference abstracts also was conducted. Studies reporting (de)hydration assessment (physical examination, biochemical measures, symptom assessment, and BIA) in patients with advanced cancer were included. RESULTS The results highlight how clinical examination and biochemical tests are standard methods of assessing hydration, but limitations exist with these methods in advanced cancer. Furthermore, there is disagreement over the evidence for some commonly associated symptoms with dehydration in cancer. Although there are limitations with using BIA alone to assess hydration in advanced cancer, analysis of BIA raw measurements through the method of bioelectrical impedance vector analysis may have a role in this population. CONCLUSION The benefits and burdens of providing clinically assisted hydration to patients dying of cancer are unclear. Bioelectrical impedance vector analysis shows promise as a hydration assessment tool but requires further study in advanced cancer. Innovative methodologies for research are required to add to the evidence base and ultimately improve the care for the dying.

What influences attitudes towards clinically assisted hydration in the care of dying patients? A review of the literature

Background An equivocal evidence base on the use of Clinically Assisted Hydration (CAH) in the last days of life presents a challenge for clinicians. In an attempt to provide clarity, the General Medical Council (GMC) has produced reasoned guidelines which identify that clinical vigilance is paramount, but that healthcare professionals should consider patient and family beliefs, values and wishes when making a decision to commence, withhold or withdraw CAH. Aims To describe the attitudes and knowledge of patients, families, healthcare professionals and the general public regarding CAH in the care of dying patients. Methods Four electronic databases were searched for empirical studies relating to attitudes and knowledge regarding CAH in the care of dying patients or end-of-life care (1985 and 2010). Selected studies were independently reviewed and data collaboratively synthesised into core themes. Results From 202 identified articles, 18 papers met inclusion criteria. Three core themes emerged: (1) the symbolic value of hydration; (2) beliefs and misconceptions and (3) cultural, ethical and legal ideas about hydration. Conclusions Developing international evidence suggests that cultural norms and ethical principles of a family, population or healthcare environment influence attitudes towards CAH, particularly where CAH has symbolic meaning; representing care, hope and trust. However, there is surprisingly little robust evidence regarding dying patients, or the wider general publics views, on the perceived value of CAH in the last days and hours of life. Accordingly, a need for greater understanding of the perceptions regarding CAH, and their effects, is required.

Caring for those who die at home: the use and validation of 'Care Of the Dying Evaluation' (CODE) with bereaved relatives.

Background As well as facilitating patients’ wish to die at home, evaluating quality of care in this setting is essential. Postbereavement surveys with family members represent one assessment method. ‘Care Of the Dying Evaluation’ (CODE) is a 40-item self-completion postbereavement questionnaire, based on the key components of best practice for care of the dying. Aim To assess the validity and reliability of CODE by conducting: cognitive ‘think aloud’ interviews; test–retest analysis; and assessing internal consistency and construct validity of three key composite scales. Design Postbereavement survey to next-of-kin (NOK). Setting/participants 291 NOK to patients who died at home in Northwest England from an advanced incurable illness were invited to complete the CODE questionnaire. Additionally, potential participants were asked to undertake a cognitive interview and/or complete CODE for a second time a month later. Results 72 bereaved relatives (24.7% response rate) returned the completed CODE questionnaire, and 25 completed CODE for a second time. 15 cognitive interviews were undertaken. All interviewees found CODE sensitively worded and easy to understand. Minor revisions were suggested to provide additional clarity. Test–retest analysis showed all except one question had moderate or good stability. Although the ENVIRONMENT scale was not as relevant within the home setting, all three key composite scales showed good internal consistency and construct validity. Conclusions ‘CODE’ represents a user-friendly, comprehensive outcome measure for care of the dying and has been found to be valid and reliable. CODE could potentially be used to benchmark individual organisations and identify areas for improvement.

How well do we currently care for our dying patients in acute hospitals: the views of the bereaved relatives?

Background The National Care of the Dying Audit—Hospitals (NCDAH) is used as a method to evaluate care for dying patients in England. An additional component to the 2013/2014 audit was the Local Survey of Bereaved Relatives Views using the ‘Care Of the Dying Evaluation’ (CODE) questionnaire. Aim Within the context of the NCDAH audit, to evaluate quality of care provided to dying patients and their families in acute hospitals from the perspective of bereaved relatives. Design Postbereavement survey to bereaved relatives. Setting/participants For acute hospitals wishing to participate, consecutive ‘expected’ adult deaths occurring between 1 May and 30 June 2013 were identified and the CODE questionnaire was sent to the next-of-kin. Results From 3414 eligible next-of-kin, 95 (2.8%) were excluded due to being involved in a complaint procedure and 1006 (29.5%) due to insufficient next-of-kin details. From the remaining 2313 potential participants, 858 returned a completed CODE questionnaire (37.1% response rate). Generally, symptoms were perceived to be well controlled with 769 (91%) participants reporting that either no pain was present or only there ‘some of the time’. Unmet information needs, however, was a recognised area for improvement, for example, 230 (29%) reporting having a discussion about hydration would have been beneficial. Conclusions Adopting a postbereavement survey to NCDAH appears to be feasible, acceptable and a valuable addition. On the whole, the majority of participants reported good or excellent care. A small but significant minority, however, perceived poor quality of patient care with clear and timely communication urgently needed.