Parents' experiences of being involved in medical decision-making for their child with a life-limiting condition: A systematic review with narrative synthesis.

BACKGROUND: Parental involvement in the decision-making processes about medical treatment for children with life-limiting conditions is recognised as good practice. Previous research highlighted factors affecting the decision-making process, but little is known about how parents experience their participation. AIM: To explore how parents experience their participation in the process of decision-making about treatment and future care for their children with life-limiting conditions. DESIGN: A systematically constructed review using narrative synthesis. The PRISMA guidelines were followed to report the findings. Databases Medline, EMBASE, SCOPUS, CINAHL and PsycINFO were searched up to December 2023. The study protocol was registered at PROSPERO (RN CRD42021215863). RESULTS: From the initial 2512 citations identified, 28 papers met the inclusion criteria and were included in the review. A wide range of medical decisions was identified; stopping general or life-sustaining treatment was most frequent. Narrative synthesis revealed six themes: (1) Temporal aspects affecting the experience with decision-making; (2) Losing control of the situation; (3) Transferring the power to decide to doctors; (4) To be a 'good' parent and protect the child; (5) The emotional state of parents and (6) Sources of support to alleviate the parental experience. CONCLUSIONS: Parental experiences with decision-making are complex and multifactorial. Parents' ability to effectively participate in the process is limited, as they are not empowered to do so and the circumstances in which the decisions are taking place are challenging. Healthcare professionals need to support parental involvement in an effective way instead of just formally asking them to participate.

Predictors of Improvement in Parental Stress After the First Three Months at Home with a Medically Fragile Infant.

OBJECTIVES: Little is known about the early stress experiences of parents of infants with serious life-limiting/life-threatening conditions during the initial months after discharge from hospital. The aim of the study was to measure change, and predictors of change, in parenting stress at the time of transition from hospital to home (T1) with a medically fragile infant, and after a 3-month period (T2). METHODS: Parents of infants identified as meeting ≥ 1 palliative care referral criterion were recruited in a Midwestern United States tertiary pediatric hospital (2012-2014) within 2 weeks of hospital discharge. A repeated measures design was used to assess change on a validated parenting stress inventory over the two timepoints (T1 and T2). Fifty-two parents (61 infants) participated at T1 and 44 (85%) at T2. RESULTS: On discharge (T1) stress was moderately high 3 months post discharge (T2) overall and domain-specific stress scores improved, except stress related to parent role functioning and participation in their child's medical care. Independent predictors of improvement in overall parenting stress scores (T2-T1) were being a younger parent and having experienced prior pregnancy-related loss. CONCLUSIONS FOR PRACTICE: The time of discharge from hospital to home is often stressful for parents of medically fragile infants. Improvements were found during the first 3 months at home, but improvement was minimal for stress related to role function and providing medical care. Past experience with pregnancy-related loss and being younger were associated with improvement in stress across theoretical domains. Screening for stress should be included as part of routine pre- and post-neonatal intensive care unit discharge psychosocial assessments of parents caring for infants with serious illness to ensure their unique support needs continue to be met over time.

What is already known about the topic? Stress in parents of sick infants is well-documented in the post-birth hospitalization period. Early management of parent stress after a child is born with a life-limiting/life-threatening condition is critical in promoting healthy infant attachment and development.What this study adds? Parents of medically fragile infants experience notable stress during the initial months at home. Pre-hospital discharge attention to medical and psychosocial characteristics of infants and parents may help health care teams anticipate post-discharge parenting challenges and facilitate personalized home support strategies aimed at minimizing parent stress and poor parent­child outcomes.

'Thank goodness you're here'. Exploring the impact on patients, family carers and staff of enhanced 7-day specialist palliative care services: A mixed methods study.

BACKGROUND: Healthcare usage patterns change for people with life limiting illness as death approaches, with increasing use of out-of-hours services. How best to provide care out of hours is unclear. AIM: To evaluate the effectiveness and effect of enhancements to 7-day specialist palliative care services, and to explore a range of perspectives on these enhanced services. DESIGN: An exploratory longitudinal mixed-methods convergent design. This incorporated a quasi-experimental uncontrolled pre-post study using routine data, followed by semi-structured interviews with patients, family carers and health care professionals. SETTING/PARTICIPANTS: Data were collected within specialist palliative care services across two UK localities between 2018 and 2020. Routine data from 5601 unique individuals were analysed, with post-intervention interview data from patients (n = 19), family carers (n = 23) and health care professionals (n = 33; n = 33 time 1, n = 20 time 2). RESULTS: The mean age of people receiving care was 73 years, predominantly white (90%) and with cancer (42%). There were trends for those in the intervention (enhanced care) period to stay in hospital 0.16 days fewer, but be hospitalised 2.67 more times. Females stayed almost 3.5 more days in the hospital, but were admitted 2.48 fewer times. People with cancer had shorter hospitalisations (4 days fewer), and had two fewer admission episodes. Themes from the qualitative data included responsiveness (of the service); reassurance; relationships; reciprocity (between patients, family carers and staff) and retention (of service staff). CONCLUSIONS: Enhanced seven-day services provide high quality integrated palliative care, with positive experiences for patients, carers and staff.

A grounded theory of interdependence between specialist and generalist palliative care teams across healthcare settings.

BACKGROUND: Individuals with palliative care needs face increased risk of discontinuity of care as they navigate between healthcare settings, locations and practitioners which can result in poor outcomes. Little is known about interactions that occur between specialist and generalist palliative care teams as patients are transition from hospital to community-based care after hospitalisation. AIM: To understand what happens between inpatient specialist palliative care teams and the generalist teams who provide post-discharge palliative care for shared patients. DESIGN: A constructivist grounded theory approach, using semi-structured interviews and constant comparative analysis, including coding, memo-writing and diagram construction. SETTINGS/PARTICIPANTS: Interviews (n = 21) with specialist palliative care clinicians and clinicians in other specialties providing generalist palliative care. Specialists had training in palliative care and worked in specialty palliative care practices; other clinicians worked in primary care or oncology and did not have specialised palliative care training. RESULTS: A grounded theory of interdependence between specialist and generalist palliative care teams across healthcare settings was constructed. Two states of inter-team functioning were found which related to how teams perceived themselves: separate teams or one cross-boundary team. Three conditions influenced these two states of inter-team functioning: knowing the other team; communicating intentionally; and acknowledging and valuing the role of the other team. CONCLUSIONS: Teams need to explicitly consider and agree their mode of functioning, and enact changes to enhance knowledge of the team, intentional communication and valuing other teams' contributions. Future research is needed to test or expand this theory across a range of cultures and contexts.

A comparison between thoracic epidural analgesia and rectus sheath catheter analgesia after open midline major abdominal surgery: randomized clinical trial.

BACKGROUND: Rectus sheath catheter analgesia (RSCA) and thoracic epidural analgesia (TEA) are both used for analgesia following laparotomy. The aim was to compare the analgesic effectiveness of RSCA with TEA after laparotomy for elective colorectal and urological surgery. METHODS: Patients undergoing elective midline laparotomy were randomized in a non-blinded fashion to receive RSCA or TEA for postoperative analgesia at a single UK teaching hospital. The primary quantitative outcome measure was dynamic pain score at 24 h after surgery. A nested qualitative study (reported elsewhere) explored the dual primary outcome of patient experience and acceptability. Secondary outcome measures included rest and movement pain scores over 72 h, functional analgesia, analgesia satisfaction, opiate consumption, functional recovery, morbidity, safety, and cost-effectiveness. RESULTS: A total of 131 patients were randomized: 66 in the RSCA group and 65 in the TEA group. The median (interquartile range; i.q.r.) dynamic pain score at 24 h was significantly lower after TEA than RSCA (33 (11-60) versus 50.5 (24.50-77.25); P = 0.018). Resting pain score at 72 h was significantly lower after RSCA (4.5 (0.25-13.75) versus 12.5 (2-13); P = 0.019). Opiate consumption on postoperative day 3 (median (i.q.r.) morphine equivalent 17 (10-30) mg versus 40 (13.25-88.50) mg; P = 0.038), hypotension, or vasopressor dependency (29.7 versus 49.2 per cent; P = 0.023) and weight gain to day 3 (median (i.q.r.) 0 (-1-2) kg versus 1 (0-3) kg; P = 0.046) were all significantly greater after TEA, compared with RSCA. There were no significant differences between groups in other secondary outcomes, although more participants experienced serious adverse events after TEA compared with RSCA, which was also the more cost-effective. CONCLUSIONS: TEA provided superior initial postoperative analgesia but only for the first 24 h. By 72 hours RSCA provides superior analgesia, is associated with a lower incidence of unwanted effects, and may be more cost-effective.

Women's experiences of advanced breast cancer in a resource-limited Arab context: A Stakian multi-case study.

OBJECTIVE: Breast cancer is the most common cancer for women, globally. Women are more likely to present with more advanced cancer and palliative care needs in low-resource contexts. There is limited research on Arab, Muslim and African women's experiences of advanced breast cancer. The aim of this study was to explore and understand the experiences of advanced breast cancer in the Islamic Republic of Mauritania. METHODS: Using a constructivist Stakian multi-case study approach, eight cases were constructed with women with advanced breast cancer (n = 8), family members (n = 10) and health professionals (n = 9). Data were collected longitudinally (up to nine months per case) and included semi-structured interviews and audio-journals. Data from 58 interviews and 31 journal entries were thematically analysed. RESULTS: Three key themes were identified: 1. Destiny: Maure women appreciate that Allah is all powerful and maintains control over their destinies and their breast cancer. 2. Patience & Acceptance: a fear of causing offence to Allah influences how women express their experiences of breast cancer and its treatments. 3. Journeying in search of a cure: Maure women have limitled access to information around their cancer and its treatments. Women use their own observations and interpretations to understand their breast cancer and guide their pursuit of treatment and a cure. CONCLUSION: Maure women feel reassured that life and cure remain possible because of Allah's sustenance; but are aware that the gift of life is fragile. They experience restricted power over how they express negative experiences, access to information, and healthcare decisions.

Exploring the experience of recurrence with advanced cancer for people who perceived themselves to be cancer free: a grounded theory study.

PURPOSE: Advances in cancer treatment have led to longer cancer-free periods and overall survival. This study aimed to understand patients' experiences of transitioning out of a state of believing to be cancer free into incurable recurrence with advanced disease. METHODS: Using constructivist grounded theory with in-depth interviews patients (n = 15) with solid tumors from a major US cancer center participated. Theoretical sampling enabled concepts to be developed until theme saturation. Constant comparative analysis used initial and focused coding to develop themes and concepts to describe this specific period from extended time cancer free and transition to advanced incurable disease. RESULTS: Three interrelated concepts were identified: reluctant acceptance, seeking survival through continuous treatment, and hope in the face of an uncertain future. A conceptual model of the experience was developed encompassing anger and sadness, at initial recurrence, to reluctant acceptance, and, finally, a cycle of seeking continuous treatment to prolong life leading to a sense of hope in the face of an uncertain future. CONCLUSION: The cycle between treatment and hope creates a state of personal equilibrium, which provides insights into the importance of treatment for this population. This study provides direction for future research to understand the expectations of people experiencing advanced cancer recurrence. IMPLICATIONS FOR CANCER SURVIVORS: Many cancer survivors live with advanced cancer. Assessing their needs as they transition from survivor with no disease to survivor with advanced disease requires a new conceptualization of the experience which recognizes expectations and priorities for care of this patient group.

Activity and advanced cancer: A grounded theory.

BACKGROUND: Cancer-related fatigue and loss of physical functioning are distressing symptoms which negatively impact the quality of life of people with advanced cancer. Physical activity has been shown to have positive effects on these symptoms in early-stage cancer, but previous research demonstrated an incongruence between people with advanced cancer's expressed interest and actual participation in a physical activity intervention. AIM: To gain an in-depth understanding of the experience of activity and quality of life in people with advanced cancer, using a classic grounded theory approach. DESIGN: Through the post-positivist lens of subtle realism, and informed by classic grounded theory methods, a two-phase, cross-sectional, qualitative study was conducted. For 7 days duration, participants wore an activPAL™ activity monitor and completed a daily record sheet, which were then used as qualitative probes for face-to-face, semi-structured interviews. SETTING/PARTICIPANTS: A total of 15 people with advanced cancer, aged 18 years or older, and with a median survival of 100 days from time of study consent, were recruited from an outpatient department of a tertiary cancer centre in Alberta, Canada. FINDINGS: Maintaining their responsibilities, no matter how small, was the prime motive for participants' behaviour. For people with advanced cancer, the minimum level of responsibility was dynamic and unique. It was achieved through a multifaceted interaction between the perceived benefits, prevailing conditions and mechanisms. CONCLUSION: This grounded theory enables understanding of activity as a mechanism through which responsibility is managed and may inform future behavioural interventions in people with advanced cancer.

A philosophical critique of the UK's National Institute for Health and Care Excellence guideline 'Palliative care for adults: strong opioids for pain relief'.

The National Institute for Health and Care Excellence (NICE) promotes evidence-based medicine throughout contemporary health care. Its guidelines are employed in the United Kingdom and elsewhere, influencing the type and quality of health care provided. NICE considers a range of evidence in the process of creating guidelines; however, the research accepted as evidence greatly relies on positivist methodologies. At times, it is unnecessarily restricted to quantitative methods of data collection. Using the Clinical Guideline 140, opioids in palliative care, as an example, it is demonstrated that the research accepted as evidence is unable to provide answers to complex problems. In addition, several inherent biases are discussed, such as age inequality and pharmaceutical company influence. In order to provide coherent and useful guidelines relevant to complex problems in a real world setting, NICE must move away from focusing on data from randomised controlled trials. Its epistemological foundation must be questioned, paving the way for alternative research paradigms to be considered as evidence and thereby enriching subsequent guidelines.

Silence as an element of care: A meta-ethnographic review of professional caregivers' experience in clinical and pastoral settings.

BACKGROUND: In interactions between professional caregivers, patients and family members at the end of life, silence often becomes more prevalent. Silence is acknowledged as integral to interpersonal communication and compassionate care but is also noted as a complex and ambiguous phenomenon. This review seeks interdisciplinary experience to deepen understanding of qualities of silence as an element of care. AIM: To search for published papers which describe professional caregivers' experience of silence as an element of care, in palliative and other clinical, spiritual and pastoral care settings and to synthesise their findings. DESIGN: Meta-ethnography: employing a systematic search strategy and line-of-argument synthesis. DATA SOURCES: PsycINFO and seven other cross-disciplinary databases, supplemented by hand-search, review of reference lists and citation tracking. No date range was imposed. Inclusion criteria focused on reported experience of silence in professional caregiving. Selected papers ( n = 18) were appraised; none were rejected on grounds of quality. RESULTS: International, interdisciplinary research and opinion endorses the value of silence in clinical care. As a multi-functional element of interpersonal relationships, silence operates in partnership with speech to support therapeutic communication. As a caregiving practice, silence is perceived as particularly relevant in spiritual and existential dimensions of care when words may fail. CONCLUSION: Experience of silence as an element of care was found in palliative and spiritual care, psychotherapy and counselling supporting existing recognition of the value of silence as a skill and practice. Because silence can present challenges for caregivers, greater understanding may offer benefits for clinical practice.

'Powerlessness' or 'doing the right thing' - Moral distress among nursing home staff caring for residents at the end of life: An interpretive descriptive study.

BACKGROUND: Caring for dying people can contribute to moral distress experienced by healthcare professionals. Moral distress can occur when this caring is restricted by organisational processes, resources or the provision of futile care. These factors apply to end of life care in nursing homes but research is lacking. AIM: To describe how nursing home staff experience moral distress when caring for residents during and at the end of life. METHODS: An interpretive descriptive design, using the critical incident technique in semi-structured interviews to collect data from nursing home staff. Data were analysed using a thematic analysis approach. SETTING: Four nursing homes in one large metropolitan area. PARTICIPANTS: A total of 16 staff: 2 nurse managers, 4 nurses and 10 care assistants. FINDINGS: Participants described holding 'good dying' values which influenced their practice. The four practice-orientated themes of advocating, caring, communicating and relating with residents were found to influence interactions with residents, relatives, general practitioners, and colleagues. These led staff to be able to 'do the right thing' or to experience 'powerlessness', which could in turn lead to staff perceiving a 'bad death' for residents. CONCLUSION: When there are incongruent values concerning care between staff and others involved in the care of residents, staff feel powerless to 'do the right thing' and unable to influence care decisions in order to avoid a 'bad death'. This powerlessness is the nature of their moral distress.

Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: Recommendations based on a methodological systematic review.

BACKGROUND: The Delphi technique is widely used for the development of guidance in palliative care, having impact on decisions with relevance for patient care. AIM: To systematically examine the application of the Delphi technique for the development of best practice guidelines in palliative care. DESIGN: A methodological systematic review was undertaken using the databases PubMed, CINAHL, Web of Science, Academic Search Complete and EMBASE. DATA SOURCES: Original articles (English language) were included when reporting on empirical studies that had used the Delphi technique to develop guidance for good clinical practice in palliative care. Data extraction included a quality appraisal on the rigour in conduct of the studies and the quality of reporting. RESULTS: A total of 30 empirical studies (1997-2015) were considered for full-text analysis. Considerable differences were identified regarding the rigour of the design and the reporting of essential process and outcome parameters. Furthermore, discrepancies regarding the use of terms for describing the method were observed, for example, concerning the understanding of a 'round' or a 'modified Delphi study'. CONCLUSION: Substantial variation was found concerning the quality of the study conduct and the transparency of reporting of Delphi studies used for the development of best practice guidance in palliative care. Since credibility of the resulting recommendations depends on the rigorous use of the Delphi technique, there is a need for consistency and quality both in the conduct and reporting of studies. To allow a critical appraisal of the methodology and the resulting guidance, a reporting standard for Conducting and REporting of DElphi Studies (CREDES) is proposed.

Caring for a dying spouse at the end of life: 'It's one of the things you volunteer for when you get married': a qualitative study of the oldest carers' experiences.

BACKGROUND: older people aged 80 and over are increasingly providing end-of-life care to spouses at home and often do so for long periods of time, while also trying to manage their own illnesses and disabilities. Little of the research on older spousal carers has focussed on the oldest carers; hence, the needs of this particular population are not fully known. OBJECTIVE: to explore the experiences of the 'oldest carers' in caring for a dying spouse at home. METHODS: secondary analysis was undertaken on a subset of data from a larger qualitative interview study; this dataset comprised 17 interviews from participants aged 80 or over. Framework analysis methods were used, with items derived from the thematic analysis of the main study. RESULTS: the oldest carers in this subset demonstrated high levels of resilience and the ability to adapt to their caring role. Caring until death was accepted as an integral part of the commitment made to their partner as part of the 'wedding contract'. Carers felt they benefitted from the support provided by family, friends and care services; however, their own care needs were not always recognised by health and social care services. CONCLUSIONS: these findings underscore the complexity of the oldest carers' experiences and challenges in times of illness and end of life. Healthcare professionals should be alerted to the myriad ways caregiving is enacted in serious illness and seek opportunities for developing supportive interventions specifically for older carers.

Dying at home: a qualitative study of family carers' views of support provided by GPs community staff.

BACKGROUND: Dying at home is the preference of many patients with life-limiting illness. This is often not achieved and a key factor is the availability of willing and able family carers. AIM: To elicit family carers' views about the community support that made death at home possible. DESIGN AND SETTING: Qualitative study in East Devon, North Lancashire, and Cumbria. METHOD: Participants were bereaved family carers who had provided care at the end of life for patients dying at home. Semi-structured interviews were conducted 6-24 months after the death. RESULTS: Fifty-nine bereaved family carers were interviewed (54% response rate; 69% female). Two-thirds of the patients died from cancer with median time of home care being 5 months and for non-cancer patients the median time for home care was 30 months. An overarching theme was of continuity of care that divided into personal, organisational, and informational continuity. Large numbers and changes in care staff diluted personal continuity and failure of the GPs to visit was viewed negatively. Family carers had low expectations of informational continuity, finding information often did not transfer between secondary and primary care and other care agencies. Organisational continuity when present provided comfort and reassurance, and a sense of control. CONCLUSION: The requirement for continuity in delivering complex end-of-life care has long been acknowledged. Family carers in this study suggested that minimising the number of carers involved in care, increasing or ensuring personal continuity, and maximising the informational and organisational aspects of care could lead to a more positive experience.

Thoracic Epidural analgesia versus Rectus Sheath Catheters for open midline incisions in major abdominal surgery within an enhanced recovery programme (TERSC): study protocol for a randomised controlled trial.

BACKGROUND: Thoracic epidural analgesia (TEA) is recommended for post-operative pain relief in patients undergoing major abdominal surgery via a midline incision. However, the effectiveness of TEA is variable with high failure rates reported post-operatively. Common side effects such as low blood pressure and motor block can reduce mobility and hinder recovery, and a number of rare but serious complications can also occur following their use.Rectus sheath catheters (RSC) may provide a novel alternative approach to somatic analgesia without the associated adverse effects of TEA. The aim of this study is to compare the efficacy of both techniques in terms of pain relief, patient experience, post-operative functional recovery, safety and cost-effectiveness. METHODS/DESIGN: This is a single-centre randomised controlled non-blinded trial, which also includes a nested qualitative study. Over a two-year period, 132 patients undergoing major abdominal surgery via a midline incision will be randomised to receive either TEA or RSC for post-operative analgesia. The primary outcome measures pain scores on moving from a supine to a sitting position at 24 hours post wound closure, and the patient experience between groups evaluated through in-depth interviews. Secondary outcomes include pain scores at rest and on movement at other time points, opiate consumption, functional recovery, morbidity and cost-effectiveness. DISCUSSION: This will be the first randomised controlled trial comparing thoracic epidurals to ultrasound-guided rectus sheath catheters in adults undergoing elective midline laparotomy. The standardised care provided by an Enhanced Recovery Programme makes this a comparison between two complex pain packages and not simply two analgesic techniques, in order to ascertain if RSC is a viable alternative to TEA. TRIAL REGISTRATION: Current Controlled Trials ISRCTN81223298 (16 January 2014).

Place of death in the Czech Republic and Slovakia: a population based comparative study using death certificates data.

BACKGROUND: Place of death represents an important indicator for end-of-life care policy making and is related to the quality of life of patients and their families. The aim of the paper is to analyse the place of death in the Czech Republic and Slovakia in 2011. Research questions were focused on factors influencing the place of death and specifically the likelihood of dying at home. METHODS: Whole population data from death certificates for all deaths in the Czech Republic and Slovakia in 2011 were used for bivariate and multivariate analyses. Separate analysis using binary logistic regression was conducted for subpopulation of patients who died from chronic conditions. RESULTS: The majority of population in both countries died in hospitals (58.4% the Czech Republic, 54.8% Slovakia), less than one-third died at home. In case of chronic conditions, death at home was significantly associated with underlying cause of death (cancer and heart failure), being male, age (older than 85, Slovakia only) and higher education (the Czech Republic only). Cancer and heart failure patients had higher chances to die at home than other chronic conditions. CONCLUSIONS: Czech and Slovak patients with chronic conditions are more likely to die in hospitals than in some other European Union member countries. This finding should be addressed by policy makers in promoting home hospice care services and education in palliative care for staff in nursing homes and other end-of-life settings.

The effectiveness of acupressure for the control and management of chemotherapy-related acute and delayed nausea: a randomized controlled trial.

CONTEXT: Both positive and negative results have been reported in the literature from the use of acupressure at the P6 point, providing evidence of highly suggestive but not conclusive results. OBJECTIVES: To clarify whether acupressure is effective in the management of chemotherapy-related nausea and vomiting. METHODS: A randomized, three-group, sham-controlled trial was designed. Patients with cancer receiving chemotherapy were randomized to receive standardized antiemetics and acupressure wristbands, sham acupressure wristbands, or antiemetics alone. Primary outcome assessment (nausea) was carried out daily for seven days per chemotherapy cycle over four cycles. Secondary outcomes included vomiting, psychological distress, and quality of life. RESULTS: Five hundred patients were randomized. Primary outcome analysis (nausea in Cycle 1) revealed no statistically significant differences between the three groups, although nausea levels in the proportion of patients using wristbands (both real and sham) were somewhat lower than those in the proportion of patients using antiemetics-only group. Adjusting for gender, age, and emetic risk of chemotherapy, the odds ratio of lower nausea experience was 1.18 and 1.42 for the acupressure and sham acupressure groups, respectively. A gender interaction effect was evident (P = 0.002). No significant differences were detected in relation to vomiting, anxiety, and quality-of-life measures. CONCLUSION: No clear recommendations can be made about the use of acupressure wristbands in the management of chemotherapy-related nausea and vomiting as results did not reach statistical significance. However, the study provided evidence of encouraging signals in relation to improved nausea experience and warrants further consideration in both practice and further clinical trials. TRIAL REGISTRATION: This trial is registered with the ISRCT register, number ISRCTN87604299.

From sedation to continuous sedation until death: how has the conceptual basis of sedation in end-of-life care changed over time?

CONTEXT: Numerous attempts have been made to describe and define sedation in end-of-life care over time. However, confusion and inconsistency in the use of terms and definitions persevere in the literature, making interpretation, comparison, and extrapolation of many studies and case analyses problematic. OBJECTIVES: This evidence review aims to address and account for the conceptual debate over the terminology and definitions ascribed to sedation at the end of life over time. METHODS: Six electronic databases (MEDLINE, PubMed, Embase, AMED, CINAHL, and PsycINFO) and two high-impact journals (New England Journal of Medicine and the British Medical Journal) were searched for indexed materials published between 1945 and 2011. This search resulted in bibliographic data of 328 published outputs. Terms and definitions were manually scanned, coded, and linguistically analyzed by means of term description criteria and discourse analysis. RESULTS: The review shows that terminology has evolved from simple to complex terms with definitions varying in length, comprising different aspects of sedation such as indications for use, pharmacology, patient symptomatology, target population, time of initiation, and ethical considerations, in combinations of a minimum of two or more of these aspects. CONCLUSION: There is a pressing need to resolve the conceptual confusion that currently exists in the literature to bring clarity to the dialogue and build a base of commonality on which to design research and enhance the practice of sedation in end-of-life care.

The impact of chemotherapy-related nausea on patients' nutritional status, psychological distress and quality of life.

PURPOSE: Nausea is a troublesome and distressing symptom for patients receiving chemotherapy. While vomiting is well controlled with current antiemetics, nausea is a more difficult symptom to manage. The aim of this study was to assess the impact of nausea on nutritional status, quality of life and psychological distress. METHODS: This was a prospective observational study over two cycles of chemotherapy. Patients completed the Multinational Association of Supportive Care in Cancer Antiemesis Tool, a measure of nutritional status (Patient-Generated Subjective Global Assessment), the Functional Assessment of Cancer Therapy-General (FACT-G) quality of life scale and the Hospital Anxiety and Depression Scale at the end of each chemotherapy cycle (around day 10 post-chemotherapy). RESULTS: The sample consisted of 104 patients, primarily female, receiving anthracycline-based chemotherapy. While vomiting was minimal (5.2-14.6 % of the patients), high levels of nausea were observed (55.2-72.9 %), and severe nausea (>6 on a 0-10 scale) was reported by 20.5-29.2 % of the participants. Severe nausea had a borderline significant impact in relation to physical functioning (p = 0.025) and a significant impact on nutritional status (severe acute nausea, p = 0.003; severe delayed nausea, p = 0.017). Clinically meaningful changes were observed in relation to the FACT-G total score. CONCLUSION: Chemotherapy-induced nausea does have an impact on nutritional status and physical functioning and can impair anxiety and quality of life. As a key symptom associated with other symptoms, it is imperative that greater attention is given to managing treatment-related nausea through innovative non-pharmacological and nutritional interventions.