End of life management of adult patients in an Australian metropolitan intensive care unit : a retrospective observational study

Background Death in the intensive care unit is often predictable. End of life management is often discussed and initiated when futility of care appears evident. Respect for patients wishes, dignity in death, and family involvement in the decision-making process is optimal. This goal may often be elusive. Purpose Our purpose was to review the end of life processes and family involvement within our Unit. Methods We conducted a chart audit of all deaths in our 10 bed Unit over a 12-month period, reviewing patient demographics, diagnosis on admission, patient acuity, expectation of death and not-for-resuscitation status. Discussions with the family, treatments withheld and withdrawn and extubation practices were documented. The presence of family or next-of-kin at the time of death, the time to death after withdrawal of therapy and family concerns were recorded. Results There were 70 patients with a mean age of 69 years. Death was expected in 60 patients (86%) and not-for-resuscitation was documented in 58 cases (85%). Family discussions were held in 63 cases (90%) and treatment was withdrawn in 34 deaths (49%). After withdrawal of therapies, 31 patients (44%) died within 6 h. Ventilatory support was withdrawn in 24 cases (36%). Family members were present at the time of death in 46 cases (66%). Family concerns were documented about the end of life care in only 1 case (1.4%). Conclusion Our data suggests that death in our Unit was often predictable and that end of life management was a consultative process.

End of life care - the importance of advance care planning

Background: Communication about end of life care may involve difficult conversations for patients, family members and health professionals. However, a lack of understanding of a person's wishes about their future care may result in a loss of dignity for the person, and additional distress for their family members and health professionals and burden to the healthcare system. Objective: This article discusses the barriers to advance care planning and provides some guidance for the general practitioner in undertaking advance care planning with patients and their families. Tips for initiating end of life discussions with patients and families utilising the 'PREPARED' acronym, and ensuring appropriate care delivery are included. Discussion: Involving patients and their family members in advance care planning may be challenging and time consuming for GPs. However, there are a number of resources to support this activity in relation to training, communication support and Medicare item funding.

End of life clinician-family communication in ICU: a retrospective observational study - implications for nursing

Objective: The objective of this study was to identify practice issues that influence end of life communication and care of patients and families in the intensive care unit (ICU).

Design: This study used a retrospective observational approach utilising a medical record review. Setting: An Australian metropolitan mixed medical/surgical ICU. Subjects: There are two parts to this study. The first part related to all of the patients who died in the ICU in one calendar year, a total of 97. The second part of this study related to a random selection of 25% of these patients, a total of 24.

Results: This study showed that death in the ICU was often anticipated, and that whilst communication between family and medical personnel was evident in the medical record, the involvement or occurrence of communication between the nurse and the family was not recorded, and that nurses were included in only 25% of formal family meetings.

Conclusion: Whilst this study confirmed that death is often predicted for critically ill patients, and opportunities for communication with the family or next of kin assists to achieve consensus on end of life decisions, the involvement of nurses, as primary care-givers is not well represented in the medical record, thus undermining the importance of the nurses role in direct patient care that extends to the family in the ICU.

Providing end-of-life care in the intensive care unit : issues that impact on nurse professionalism

With death a frequent event in intensive care units how, people die and the impact on family and staffs is becoming increasingly recognised as an issue requiring significant attention. Caring for a dying patient in these environments challenges the dominant ethos of seeking to cure critically ill patients. Family members require particular care as they keep vigil with their loved one and this forms a major area of work and concern for nurses. Mortality rates are higher in intensive care units than in most other settings and this impacts on staff. This paper builds on a qualitative exploratory study utilising focus groups that was undertaken to describe how nurses support family members during and after a death in the intensive care unit. This study identified issues that challenged the nurses' ability to maintain professionalism and the ways in which nurses ensured self-care. They highlighted organisational constraints, support for families and for their nursing colleagues as important issues for discussion.

Assuaging death anxiety in older overseas-born Australians of culturally and linguistically diverse backgrounds hospitalised for end-of-life care

BACKGROUND: Death anxiety is a known phenomenon in older people of culturally and linguistically diverse backgrounds (CALD) hospitalised for end-of-life (EOL) care . Little is known about how nurses assuage death anxiety in this population. AIMS: To investigate strategies used by nurses to assuage death anxiety and facilitate a good death in older CALD Australians hospitalised for EOL care.

METHODS: Advanced as a qualitative descriptive inquiry, a purposeful sample of 22 nurses was recruited from four Victorian healthcare services. Interviews were transcribed verbatim and analysed using thematic analysis processes.

FINDINGS: Nurses used three key strategies: recognising death anxiety; delineating its dimensions; and initiating conventional nursingcaring behaviours to help contain it. Contrary to expectations, cultural similarities rather than differences were found in the strategies used.

CONCLUSIONS: Nursing strategies for recognising, delineating, and managing death anxiety in older CALD people hospitalised at the EOL is an important component of quality EOL care.

Qualitative observation in a clinical setting: challenges at end of life

This paper explores the methodological challenges associated with undertaking qualitative observation in the clinical setting at end of life. The authors reflect on their experiences of using non-participant observation to explore the nursing care delivered to dying patients in acute hospital wards. The challenges of observation as a method, clearly defining the participant group and involving vulnerable populations, such as the dying patients and their families, will be discussed. Consideration is also given to defining and working within the observational field, the researchers' dual roles, cost versus benefit, impact of culture, religion and ethnicity, and the determination of research limits/boundaries, with reflections from the authors' own experiences used to exemplify the issues.

Use of targeted therapy in cancer patients in the end-of-life period: results from an Australian centre

PURPOSE: Data on the use of targeted therapies at the end of life are scarce. This study reviews the pattern of use of targeted and potentially futile, toxic, or costly therapies at an Australian cancer centre. METHODS: This retrospective single-centre review of data from patients who died within 3 months of having targeted therapy examined demographic characteristics, types of cancers, types of therapy, age, and lines of prior therapy. RESULTS: Over 24 months, two groups were analysed. Firstly, 889 patients died with 107 patients who were prescribed targeted therapy. Secondly, 457 patients were treated with targeted therapies with 52 patients, (11 %) dying within 3 months. To focus on the 52 patients: median age was 69 years, 65 % were men and 35 % were women, 50 % had haematologic cancers and 50 % had solid tumours. Ten therapeutic agents were represented: a higher total number of deaths among those prescribed erlotinib, bevacizumab, and rituximab. There were no deaths within 3 months of treatment with trastuzumab, ipilimumab, or vemurafenib. The targeted therapy was the first-line treatment in 54 %, second in 15 %, and third and beyond in 15 %. The patient's sex and type of cancer had no statistically significant influence on death within 3 months of targeted treatment. CONCLUSIONS: The use of targeted therapy at the end of life in this single-centre descriptive study was lower than documented in other studies. There is a need to prospectively document the factors leading to this prescribing behaviour to guide future protocols.

Barriers, enablers and challenges to initiating end-of-life care in an Australian intensive care unit context.

BACKGROUND: Patients admitted to Australian intensive care units are often critically unwell, and present the challenge of increasing mortality due to an ageing population. Several of these patients have terminal conditions, requiring withdrawal of active treatment and commencement of end-of-life (EOL) care. OBJECTIVES: The aim of the study was to explore the perspectives and experiences of physicians and nurses providing EOL care in the ICU. In particular, perceived barriers, enablers and challenges to providing EOL care were examined. METHODS: An interpretative, qualitative inquiry was selected as the methodological approach, with focus groups as the method for data collection. The study was conducted in Melbourne, Australia in a 24-bed ICU. Following ethics approval intensive care physicians and nurses were recruited to participate. Focus group discussions were discipline specific. All focus groups were audio-recorded then transcribed for thematic data analysis. RESULTS: Five focus groups were conducted with 11 physicians and 17 nurses participating. The themes identified are presented as barriers, enablers and challenges. Barriers include conflict between the ICU physicians and external medical teams, the availability of education and training, and environmental limitations. Enablers include collaboration and leadership during transitions of care. Challenges include communication and decision making, and expectations of the family. CONCLUSIONS: This study emphasised that positive communication, collaboration and culture are vital to achieving safe, high quality care at EOL. Greater use of collaborative discussions between ICU clinicians is important to facilitate improved decisions about EOL care. Such collaborative discussions can assist in preparing patients and their families when transitioning from active treatment to initiation of EOL care. Another major recommendation is to implement EOL care leaders of nursing and medical backgrounds, and patient support coordinators, to encourage clinicians to communicate with other clinicians, and with family members about plans for EOL care.

Caring for people with diabetes at the end of life

End-of-life care planning is assuming global significance. While general end-of-life care guidelines apply to diabetes, there are some diabetes-specific issues that need to be considered. These include the usual long trajectory to end-of-life care that enables clinicians and people with diabetes to proactively discuss when to change the focus of care from preventing diabetes complications (tight control) to a palliative approach. Palliative care aims to promote comfort and quality of life and reduce the unnecessary burden of care on individuals and their families. The aim of this paper is to discuss common disease trajectories and their relationship to diabetes care, outline strategies for proactively discussing these issues and suggest indications that palliative care is warranted.

Quality of life in children with advanced cancer: a report from the PediQUEST study

CONTEXT: Modifiable factors of health-related quality of life (HRQOL) are poorly described among children with advanced cancer. Symptom distress may be an important factor for intervention. OBJECTIVES: We aimed to describe patient-reported HRQOL and its relationship to symptom distress. METHODS: Prospective, longitudinal data from the multicenter Pediatric Quality of Life and Symptoms Technology study included primarily patient-reported symptom distress and HRQOL, measured at most weekly with the Memorial Symptoms Assessment Scale and Pediatric Quality of Life inventory, respectively. Associations were evaluated using linear mixed-effects models adjusting for sex, age, cancer type, intervention arm, treatment intensity, and time since disease progression. RESULTS: Of 104 enrolled patients, 49% were female, 89% were white, and median age was 12.6 years. Nine hundred and twenty surveys were completed over nine months of follow-up (84% by patients). The median total Pediatric Quality of Life score was 74 (interquartile range 63-87) and was "poor/fair" (e.g., <70) 38% of the time. "Poor/fair" categories were highest in physical (53%) and school (48%) compared to emotional (24%) and social (16%) subscores. Thirteen of 24 symptoms were independently associated with reductions in overall or domain-specific HRQOL. Patients commonly reported distress from two or more symptoms, corresponding to larger HRQOL score reductions. Neither cancer type, time since progression, treatment intensity, sex, nor age was associated with HRQOL scores in multivariable models. Among 25 children completing surveys during the last 12 weeks of life, 11 distressing symptoms were associated with reductions in HRQOL. CONCLUSION: Symptom distress is strongly associated with HRQOL. Future research should determine whether alleviating distressing symptoms improves HRQOL in children with advanced cancer.

An integrative review of how families are prepared for, and supported during withdrawal of life-sustaining treatment in intensive care

AIM: To conduct an integrative review on how nurses prepare families for and support families during withdrawal of life-sustaining treatments in intensive care.

BACKGROUND: End-of-life care is widely acknowledged as integral to the practice of intensive care. However, little is known about what happens after the decision to withdraw life-sustaining treatments has been made and how families are prepared for death and the dying process.

DESIGN: Integrative literature review.

DATA SOURCES: MEDLINE, CINAHL Plus, PsychINFO, PUBMED, Scopus, EMBASE and Web of Knowledge were searched for papers published between 2000 - May 2015.

REVIEW METHODS: A five stage review process, informed by Whittemore and Knafl's methodology was conducted. All papers were reviewed and quality assessment performed. Data were extracted, organised and analysed. Convergent qualitative thematic synthesis was used.

RESULTS: From an identified 479 papers, 24 papers were included in this review with a range of research approaches: qualitative (n=15); quantitative (n=4); mixed methods (n=2); case study (n=2); and discourse analysis (n=1). Thematic analysis revealed the nurses: equipped families for end of life through information provision and communication; managed the withdrawal of life-sustaining treatments to meet family need; and continued care to build memories.

CONCLUSION: Greater understanding is needed of the language that can be used with families to describe death and dying in intensive care. Clearer conceptualisation of the relationship between the medically focussed withdrawal of life-sustaining treatments and patient/family centred end-of-life care is required making the nursing contribution at this time more visible.

Quality-of-life measurement in patients undergoing radiation therapy for head and neck cancer: a Hong Kong experience

The aims of this study are (1) to establish a reliable and valid quality-of-life (QOL) questionnaire for Chinese patients with head and neck (H&N) cancer who are treated with radiation therapy and (2) to evaluate the impact of the immediate side effects of treatment on the QOL of these patients. The 39-item "Quality of Life Radiation Therapy Instrument with Head and Neck Companion Module" (QOL-RTI/H&N) was translated into Chinese. In the reliability evaluation phase (study module 1), the questionnaire was administered twice to 56 H&N cancer patients, 7 days apart, during the second and third week of radiation therapy. In the validity evaluation phase (study module 2), 138 patients completed the QOL-RTI/H&N before starting and at the end of radiation therapy. Sixty-nine of these 138 patients also completed the QOL-RTI/H&N during the second week of their radiation therapy, at the same time as completing the Functional Assessment of Cancer Therapy-Head and Neck (FACT-H&N) questionnaire. Cronbach alpha coefficients were 0.88 for the general-tool QOL-RTI and 0.90 for the H&N subscale. Test-retest reliability was satisfactory with intraclass correlation coefficients of 0.89 for the general-tool QOL-RTI and 0.75 for the H&N subscale. The instrument can discriminate between patients with stage I or II disease and those with stage III or IV disease (P < .05). Concurrent validity was established by the good agreement with the FACT-H&N (r = 0.86, P < .001). A highly significant deterioration was in the QOL from the baseline to the end of treatment (mean difference for general tool = 1.95, P < .001; mean difference for H&N subscale = 4.85, P < .001). The Chinese QOL-RTI/H&N is a reliable and valid tool for determining the QOL in H&N cancer patients receiving radiation therapy. The immediate side effects of treatment had a significantly negative impact on the patients' QOL. The impact was relatively large for the functional and treatment-site aspects.

Quality of life amongst people over 65 years of age : does constipation make a difference?

Aims
The aims of this study was to determine whether quality of life for people 65 years and over is affected by constipation and laxative use and to identify dimensions or functions of quality of life that were specifically affected by constipation.

Method
Of the 79 subjects who completed the pre-screening questionnaire to determine their bowel function and laxative use status , 58 agreed to participate in the phase of the study (73%) of which 22 were females and 36 were males. Subjects completed a quality of life questionnaire, comprising of ComQoL questions and SF36 questions during a face to face interview conducted in their own homes.

Results
ComQoL importance and satisfaction scores were compared by bowel health status and gender. The most important dimensions for all subjects were health (mean score 9.4), family (mean score 9.3) and their own happiness (mean score 8.7). The total mean for satisfaction score for the whole group was 69%, fractionally lower that the bottom end of the normative range (70-80%). Constipated subjects scored satisfaction with their health significantly lower than the not constipated group (p =0.02) and subjects who took laxatives once a fortnight or more also had significantly lower satisfaction with their health (p=0.03).

Conclusion
Overall the subjects reported a high level of satisfaction with their lives, constipation and laxative use affected their satisfaction with their health. Further exploration is needed to determine how this will affect lifestyle and health behaviours.

Impact of depression treatment on mental and physical health-related quality of life of cardiac patients : a meta-analysis

PURPOSE: To conduct a meta-analysis evaluating the effectiveness of depression treatment on mental and physical health-related quality of life (HRQOL) of cardiac patients.

METHODS: Studies were identified using medical, health, psychiatry, psychology, and social sciences databases. Inclusion criteria were (1) 1 or more control conditions, (2) random assignment to condition after admission for myocardial infarction (MI)/acute coronary syndrome, after recording positive results on a depression screener, (3) documentation of depression symptoms at baseline, (4) depression management as a component of the rehabilitation/intervention, (5) validated measure of HRQOL as an outcome, at minimum 6-month followup. For meta-analysis, mental and physical HRQOL were the end points studied, using standardized mean differences for continuous outcome measures, with 95% confidence intervals. Heterogeneity was explored by calculating I2 statistic.

RESULTS: Five randomized controlled trials included in the analysis represented 2105 participants (1058 intervention vs 1047 comparator). Compared with a comparator group at 6 months, a test for overall effect demonstrated statistically significant improvements in mental HRQOL in favor of the intervention (standardized mean differences = −0.29 [−0.38 to −0.20], [P < .00001]; I2 = 0%). Depression treatment had a modest yet significant impact on physical HRQOL (standardized mean differences = −0.14 [−0.24 to −0.04] [P = .009]; I2 = 15%).

CONCLUSION: While the impact of post-MI depression interventions on physical HRQOL is modest, treatment can improve mental HRQOL in a significant way. Future research is required to develop and evaluate a program that can achieve vital improvements in overall HRQOL, and potentially cardiovascular outcomes, of cardiac patients.