Updating international consensus on best practice in care of the dying: A Delphi study.

BACKGROUND: Good care of the dying has been defined as being able to die in the place of your choice, free from pain, cared for with dignity and supported by the best possible care. This definition underpinned the development of the '10/40 Model' of care for the dying, in 2013. The model includes 10 'Key Principles' that underpin 40 'Core Outcomes' of care. It was necessary to update consensus on the 10/40 Model to ensure that it remains clinically relevant and applicable for practice. AIM: Update international consensus on the content of the 10/40 Model. DESIGN: Delphi study utilising questionnaire completion; each round informed the need for, and content of the next. Free text comments were also sought. Three rounds of Delphi were undertaken. SETTING/PARTICIPANTS: A total of 160 participants took part in round 1, representing 31 countries; 103 in round 2 and 57 in round 3. Participants included doctors, nurses, researchers and allied health professionals, with over 80% working predominantly in palliative care (general/specialist not specified). RESULTS: Minor amendments were made to seven items related to: recognition of the dying phase, ongoing assessment of the patient's condition, communication with patients about the plan of care and care in the immediate time after the death of a patient. Results supported the addition of a sub core outcome for care provided after death. CONCLUSION: The updated 10/40 Model will guide the delivery of high-quality care for dying patients regardless of the location of care. Further work should focus on increasing lay participation and participation from low income and culturally diverse countries.

Complementary therapy in palliative care: A synthesis of qualitative and quantitative systematic reviews.

BACKGROUND: Interventions delivered in palliative care are complex and their evaluation through qualitative and quantitative research can lead to contrasting results. In a systematic review of trials, the effectiveness results of complementary therapies in palliative care were inconclusive; however, our qualitative synthesis showed participants perceived them to be beneficial. AIM: Use a novel methodology to synthesise evidence from qualitative and quantitative systematic reviews on complementary therapy in palliative care to explore the following: (1) If interventions delivered in trials reflect how participants in qualitative studies report they are delivered in real-life settings and (2) whether quality of life measures used in trials capture perceived benefits that are reported in qualitative studies. METHODS: Two matrix tables were formulated. In one, key components in delivery of the complementary therapy from the qualitative synthesis which are as follows: (1) relationship with therapist, (2) comfortable environment, (3) choices (e.g. area of massage) and (4) frequent sessions, were plotted against intervention description, to explore matches and mismatches. In the other, items included in quality of life scales were compared with perceived benefits of complementary therapy. RESULTS: None of the trials included all four key delivery components. The five quality of life scales used in the trials failed to capture the range of perceived benefits from the complementary therapies and many included inappropriate or redundant items. CONCLUSIONS: By integrating qualitative and quantitative review data, we determined the reasons trials may be inconclusive. This methodological exemplar provides a framework for understanding complexity in outcomes across trials and a direction for future research.

The effectiveness of aromatherapy, massage and reflexology in people with palliative care needs: A systematic review.

BACKGROUND: Aromatherapy, massage and reflexology are widely used in palliative care. Despite this, there are questions about their suitability for inclusion in clinical guidelines. The need to understand their benefits is a public priority, especially in light of funding pressures. AIM: To synthesise current evidence on the effectiveness of aromatherapy, massage and reflexology in people with palliative care needs. DESIGN: A systematic review of randomised controlled trials (PROSPERO CRD42017081409) was undertaken following international standards including Cochrane guidelines. The quality of trials and their pooled evidence were appraised. Primary outcomes on effect were anxiety, pain and quality-of-life. DATA SOURCES: Eight citation databases and three trial registries were searched to June 2018. RESULTS: Twenty-two trials, involving 1956 participants were identified. Compared with a control, four evaluated aromatherapy, eight massage and six reflexology. A further four evaluated massage compared with aromatherapy. Trials were at an unclear risk of bias. Many had small samples. Heterogeneity prevented meta-analysis. In comparison with usual care, another therapy or an active control, evidence on the effectiveness of massage and aromatherapy in reducing anxiety, pain and improving quality-of-life was inconclusive. There was some evidence (low quality) that compared to an active control, reflexology reduced pain. CONCLUSIONS: This review identified a relatively large number of trials, but with poor and heterogeneous evidence. New clinical recommendations cannot be made based on current evidence. To help provide more definitive trial findings, it may be useful first to understand more about the best way to measure the effectiveness of these therapies in palliative care.

Aromatherapy, massage and reflexology: A systematic review and thematic synthesis of the perspectives from people with palliative care needs.

BACKGROUND: Effectiveness evidence of complementary therapies in people with advanced disease is uncertain, and yet people are still keen to engage in complementary therapy. Insights into people's experiences of complementary therapy in palliative care, the perceived benefits, and how they want it delivered, can inform clinical guidelines and suggest ways to test therapies more appropriately in future evaluations. AIMS: Explore in people with advanced disease (1) the experiences and perceptions of benefits and harms of aromatherapy, massage, and reflexology and (2) how they would like these therapies delivered. DESIGN: A systematic review and thematic synthesis of qualitative studies. Database search terms were related to palliative care, aromatherapy, reflexology and massage. Citations and full texts were reviewed independently against predefined inclusion criteria. Studies were appraised for quality. This review is registered at PROSPERO (22/11/2017 CRD42017081409). DATA SOURCES: MEDLINE, EMBASE, PsycINFO, AMED, CINAHL, KoreaMed and ProQuest with a bibliography search to June 2018. RESULTS: Five qualitative studies in advanced cancer were identified. Three analytical themes were identified: (1) Experience during the therapy (enhanced well-being and escapism), (2) beyond the complementary therapy session (lasting benefits and overall evaluation), and (3) delivery of complementary therapy in palliative care (value of the therapist and delivery of the complementary therapy). CONCLUSIONS: People with advanced cancer experience benefits from aromatherapy, reflexology and massage including enhanced well-being, respite, and escapism from their disease. Complementary therapy interventions should be developed in consultation with the target population to ensure they are delivered and evaluated, where feasible, as they wish.

WITHDRAWN: Aromatherapy and massage for symptom relief in patients with cancer.

BACKGROUND: Aromatherapy massage is a commonly used complementary therapy, and is employed in cancer and palliative care largely to improve quality of life and reduce psychological distress. OBJECTIVES: To investigate whether aromatherapy or massage, or both, decreases psychological morbidity, lessens symptom distress and/or improves the quality of life in patients with a diagnosis of cancer. SEARCH STRATEGY: We searched CENTRAL (The Cochrane Library, Issue 1, 2002), MEDLINE (1966 to May week 3 2002), CINAHL (1982 to April 2002), British Nursing Index (1994 to April 2002), EMBASE (1980 to Week 25 2002), AMED (1985 to April 2002), PsycINFO (1887 to April week 4 2002), SIGLE (1980 to March 2002), CancerLit (1975 to April 2002) and Dissertation Abstracts International (1861 to March 2002). Reference lists of relevant articles were searched for additional studies. SELECTION CRITERIA: We sought randomised controlled trials (RCTs); controlled before and after studies; and interrupted time series studies of aromatherapy or massage, or both, for patients with cancer, that measured changes in patient-reported levels of physical or psychological distress or quality of life using reliable and valid tools. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed trials for inclusion in the review, assessed study quality and extracted data. Study authors were contacted where information was unclear. MAIN RESULTS: The search strategy retrieved 1322 studies. Ten studies met the inclusion criteria and these represented eight RCTs (357 participants). The most consistently found effect of massage or aromatherapy massage was on anxiety. Four trials (207 participants) measuring anxiety detected a reduction post intervention, with benefits of 19 to 32% reported. Contradictory evidence exists as to any additional benefit on anxiety conferred by the addition of aromatherapy. The evidence for the impact of massage/aromatherapy on depression was variable. Of the three trials (120 participants) that assessed depression in cancer patients, only one found any significant differences in this symptom. Three studies (117 participants) found a reduction in pain following intervention, and two (71 participants) found a reduction in nausea. Although several of the trials measured changes in other symptoms such as fatigue, anger, hostility, communication and digestive problems, none of these assessments was replicated. AUTHORS' CONCLUSIONS: Massage and aromatherapy massage confer short term benefits on psychological well being, with the effect on anxiety supported by limited evidence. Effects on physical symptoms may also occur. Evidence is mixed as to whether aromatherapy enhances the effects of massage. Replication, longer follow up, and larger trials are need to accrue the necessary evidence.

Reflexology for symptom relief in patients with cancer.

Complementary therapies are increasingly being used in hospices and hospitals alongside orthodox treatments in an attempt to improve patients' emotional, spiritual, psychological, and physical well-being. An average of 31% of UK patients with cancer use some form of complementary therapy. Many UK cancer centers, out-patient units, and hospices are providing complementary services. There is strong anecdotal evidence that complementary therapies assist in the palliation of physical and psychological symptoms. This systematic review examines the research evidence base for the effectiveness of reflexology in cancer care. The study reports the results of a systematic review following the Cochrane principles of systematic reviewing. No meta-analysis was possible. Studies were retrieved from a comprehensive search of electronic databases from their start dates. An initial search was carried out in 2003 and updated in 2005 to 2006. Eligible studies were randomized controlled trials, controlled before and after studies, and interrupted time-series studies. Participants were adults with a diagnosis of cancer, receiving care in any healthcare setting. Interventions were limited to reflexology carried out by a qualified therapist as distinguished from another healthcare professional carrying out a reflexology intervention. Outcome measures were patient-reported levels of physical and psychological indices of symptom distress and quality of life (measured using validated assessment tools).

Massage for symptom relief in patients with cancer: systematic review.

AIM: This paper is a report of a review to assess evidence of the effectiveness of massage for patients with cancer, in terms of reducing physical or psychological symptoms, improving quality of life, or producing unwanted side effects. BACKGROUND: Patients with cancer may use complementary therapies, including massage and aromatherapy massage. However, their use and provision by state-financed healthcare services is controversial. DATA SOURCES: A systematic review was carried out, using the Cochrane principles. No meta-analysis was appropriate. An initial comprehensive search of electronic databases search was carried out in 2003 and updated in 2006. Eligible trials were randomized controlled trials, controlled before-and-after (pre-post) studies and interrupted time-series studies. Participants were adults with a diagnosis of cancer and receiving care in any healthcare setting. Interventions were limited to massage and/or aromatherapy massage carried out by a qualified therapist. Outcome measures to be included were patient-reported levels of physical and psychological indices of symptom distress and quality of life (measured using validated assessment tools). FINDINGS: In the review, 1325 papers were considered. Ten trials met the inclusion criteria and their results suggest that massage might reduce anxiety in patients with cancer in the short term and may have a beneficial effect on physical symptoms of cancer, such as pain and nausea. However, the lack of rigorous research evidence precludes drawing definitive conclusions. CONCLUSION: Further well-designed large trials with longer follow-up periods are needed to be able to draw firm conclusions about the efficacy and effectiveness of massage for cancer patients.

Effectiveness of aromatherapy massage in the management of anxiety and depression in patients with cancer: a multicenter randomized controlled trial.

PURPOSE: To test the effectiveness of supplementing usual supportive care with aromatherapy massage in the management of anxiety and depression in cancer patients through a pragmatic two-arm randomized controlled trial in four United Kingdom cancer centers and a hospice. PATIENTS AND METHODS: Two hundred eighty-eight cancer patients, referred to complementary therapy services with clinical anxiety and/or depression, were allocated randomly to a course of aromatherapy massage or usual supportive care alone. RESULTS: Patients who received aromatherapy massage had no significant improvement in clinical anxiety and/or depression compared with those receiving usual care at 10 weeks postrandomization (odds ratio [OR], 1.3; 95% CI, 0.9 to 1.7; P = .1), but did at 6 weeks postrandomization (OR, 1.4; 95% CI, 1.1 to 1.9; P = .01). Patients receiving aromatherapy massage also described greater improvement in self-reported anxiety at both 6 and 10 weeks postrandomization (OR, 3.4; 95% CI, 0.2 to 6.7; P = .04 and OR, 3.4; 95% CI, 0.2 to 6.6; P = .04), respectively. CONCLUSION: Aromatherapy massage does not appear to confer benefit on cancer patients' anxiety and/or depression in the long-term, but is associated with clinically important benefit up to 2 weeks after the intervention.

A UK-wide postal survey to evaluate palliative care education amongst General Practice Registrars.

OBJECTIVES: To evaluate the content of General Practice Registrars' (GPRs) palliative care education in the U.K. METHODS: Postal questionnaires were sent to 492 eligible GPRs across six purposively sampled U.K. postgraduate deaneries. RESULTS: GPRs were satisfied with their course coverage on control of pain, other symptoms and communication skills, and were also moderately confident in applying the knowledge gained in these areas. They showed a high level of knowledge in the management of cancer-related pain. There was less satisfaction with the coverage given to syringe driver use (38%) and bereavement care (36%), with fewer expressing confidence in applying their knowledge to these areas. CONCLUSIONS: GPRs have mixed perceptions about their palliative care education. Future educational packages should ensure that GPRs receive planned systematic training in bereavement care and some practical experience in the use of syringe drivers. Both Postgraduate General Practice Education departments and specialist palliative care providers should explore ways of working more closely together to provide GPRs with more expertize in palliative care.

Measuring spiritual belief: development and standardization of a Beliefs and Values Scale.

BACKGROUND: Higher levels of religious involvement are modestly associated with better health, after taking account of other influences, such as age, sex and social support. However, little account is taken of spiritual beliefs that are not tied to personal or public religious practice. Our objective was to develop a standardized measure of spirituality for use in clinical research. METHOD: We characterized the core components of spirituality using narrative data from a purposive sample of people, some of whom were near the end of their lives. These data were developed into statements in a scale to measure strength of spiritual beliefs and its reliability, validity and factor structure were evaluated in order to reach a final version. RESULTS: Thirty-nine people took part in the qualitative study to define the nature of spirituality in their lives. These data were used to construct a 47-item instrument that was evaluated in 372 people recruited in medical and non-medical settings. Analysis of these statements led to a 24-item version that was evaluated in a further sample of 284 people recruited in similar settings. The final 20-item questionnaire performed with high test-retest and internal reliability and measures spirituality across a broad religious and non-religious perspective. CONCLUSIONS: A measure of spiritual belief that is not limited to religious thought, may contribute to research in psychiatry and medicine.

Constipation management in palliative care: a survey of practices in the United kingdom.

Fifty percent of patients admitted to hospices cite constipation as a concern. This study evaluates how constipation was managed in 11 hospices. Patients and nurses completed questionnaires at two time points: baseline and 7-10 days later. Outcomes were evaluated using a Constipation Visual Analogue Scale and a satisfaction with management of constipation questionnaire. A total of 475 patients participated; 413 completed both assessments. Forty-six percent of patients reported no constipation and 15% of patients reported severe constipation. For 75% of patients, no change in the perception of constipation was observed over the study period. Patients expressed satisfaction with their constipation management. The severity of constipation was overestimated by nurses in many patients. The findings indicate that constipation was being prevented or reasonably well managed. However, severe constipation continues to be a problem. Assessment of patients' bowel function needs to be more rigorous and those identified as severely constipated need daily monitoring.

A qualitative evaluation of the impact of palliative care day services: the experiences of patients, informal carers, day unit managers and volunteer staff.

OBJECTIVES: To explore the experiences of people involved in UK palliative care day services (PCDS) and identify the important outcomes of this service. METHODS: Focus groups were carried out separately with patients, informal carers and volunteers from four purposively selected palliative care day units and with day unit managers from 11 units. RESULTS: Patients benefited from both the support of PCDS professionals and social support of fellow PCDS patients, which contributed to a perceived improvement in their quality of life. Carers appreciated both the respite and support from PCDS, but acknowledged that they still had a poor quality of life. The challenges facing PCDS include the difficulties of discharging patients and the future role of volunteers. DISCUSSION: PCDS improved patients' perceived quality of life and future evaluations on patient outcomes could use concepts such as self-esteem, self-worth and confidence. Future service provision could explore the possibility of a mixed service using both the traditional and appointment-based system.

District nurses' referrals to home-based palliative nursing services.

This study investigated district nurses' considerations of the Marie Curie Nursing Service. Most saw the primary service as respite care and referred patients to it during late stages of illness rather than palliative phases. The MCNS is valued, but confusion exists about appropriate referral times and the services provided. Improvement in communication and education is needed. The provision of this home palliative nursing service helps to promote the principle of palliative care in optimising the quality of life of patients who have life-limiting diseases and their families.

The essence of cancer care: the impact of training on nurses' ability to communicate effectively.

BACKGROUND: The importance of effective communication between health professionals and patients with cancer is widely recognized. Training programmes aimed at improving key communication skills are becoming increasingly available. PURPOSE: To evaluate a communication skills programme delivered to 308 cancer nurses as part of degree/diploma courses. Based on previous work, it was hypothesized that a statistically significant improvement between pre- and postintervention scores would be observed. METHODS: Audiotaped nursing assessments with patients were undertaken before and after the course. These were evaluated according to coverage of nine previously identified key areas of communication. RESULTS: Mean postcourse scores rose by 5.9 points (P < 0.001) to 16.3 (out of a possible 27). All nine individual areas of the assessment showed statistically significant improvements postintervention (P < 0.001). The areas showing most improvement were those with a high emotional content. CONCLUSIONS: This study has demonstrated that an integrated approach to communication skills training has the potential to improve nurses' skills, particularly in emotionally laden areas across the spectrum of roles in cancer care.

Marie Curie nurses: enabling patients with cancer to die at home.

Marie Curie Cancer Care established its nursing service in 1958; however, the service has had little formal evaluation. This study aimed to describe and evaluate the care provided by Marie Curie nurse, and in particular to determine whether patients in their care remained and died at home. Two existing data sets were used: data on all patients referred to the Marie Curie Nursing Services in 147 areas of England, Wales, Scotland and Northern Ireland for 26 months, and data on cancer death registrations in England. A request for a Marie Curie nurse was made for 26,632 patients, 97% of whom had cancer and 11% of whom lived alone. The amount of care provided varied enormously (<1 hour-2862 hours), although the vast majority of patients less than 300 hours of nursing care. Place of death was recorded for only half these patients; 94% died at home, 2.5% in a hospice, 2.3% in a hospital, 0.2% in a nursing home and 0.6% other. Home death was most often associated with patients receiving medication via a syringe driver, patients living with other people, patients with cancer, other than prostate cancer, shorter time between referral and death and younger age. The results lend support to the theory that the care given to patients in their homes by Marie Curie nurses facilitated home death for many patients. Services need to ensure that mechanisms are in place to achieve data collection. Rigorous prospective evaluation is needed in the future.

Evaluation of a hospice based reflexology service: a qualitative audit of patient perceptions.

Complementary therapies are being increasingly used in palliative care in the drive to improve patients' emotional, psychological and spiritual health, and enhance the quality of their lives. The importance of seeking the 'user' perspective when evaluating such services is becoming increasingly acknowledged. However, it is also extremely important that we elicit such perspectives in an ethically sensitive manner. This study used a simple semi-structured questionnaire to elicit the views of a convenience sample of 34 patients receiving palliative care at a specialist palliative core unit in the north of England who had completed a course of 4-6 sessions of reflexology. Patients' comments about the therapy and the service as a whole were overwhelmingly positive. They identified relaxation, relief from tension and anxiety, feelings of comfort and improved well-being as beneficial effects of their course of reflexology. Patients also spontaneously evaluated the experience holistically in terms of the wider therapeutic environment--the centre, the staff and the therapist as well as the therapy itself. The increasing demand for evidence based practice now challenges researchers to provide a relevant holistic assessment of complementary therapies using approaches that are both ethical and sensitive to the needs of this vulnerable patient population.

Patient compliance with medication regimen after discharge from palliative care.

Patient compliance with prescribed medication has been well researched and there is a consensus in the literature that noncompliance exists on a large scale. In the studies reviewed the level of non-compliance ranged from 38.5% to 60%, but very little of this research related specifically to palliative care patients. The present study was undertaken to ascertain the level of compliance in a group of patients who had been discharged home from a palliative care centre, and to obtain their views on taking their medication in order to identify ways in which services could be improved.