Vulnerability at the end of life: Australian veterans requiring home-based palliative care

In Australia, veterans are a vulnerable group, because of ageing, and high rates of chronic or life-threatening illnesses and poor mental health .This retrospective pilot study explored the home-based palliative care needs of veterans as they face the end of their life, compared to non-veterans. Medical records of ten deceased veterans and ten non-veterans in a home-based palliative care service were analyzed both for demographic data, and qualitative content. Veterans had significantly more comorbidities and were older at death. Qualitative data indicated common concerns, including the role of families and practical aspects of care. Some differences were found between veterans and non-veterans in their end-of-life care requirements. More awareness of veterans’ status may assist in care more tailored to their specific needs.

End-of-life care in a rehabilitation centre for older people in Australia

Aim
To investigate processes at the end of life for patients who died in a subacute evaluation and management facility for older people.

Methods
A retrospective chart audit for patients (n = 55) who died in the previous 2 years was undertaken, recording a number of significant variables.


Results
Despite diagnosis of comorbid medical conditions, most participants were admitted for improved functioning or assessment for alternative accommodation. Consistent with this focus, the key contact person was most often an allied health team member. Not For Resuscitation order and/or power of attorney documents on admission were uncommon (<30%) as were referrals to palliative care specialist staff (13%), although an end-of-life discussion was recorded (90%) and often included as a new goal of care (71%).

Conclusion
Factors likely to improve end-of-life care include advance care planning, earlier recognition of short prognosis and staff education.

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.

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.

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.

The influence of medical enduring power of attorney and advance directives on decision making by Australian intensive care doctors

OBJECTIVE: Despite government encouragement for patients to make advance plans for medical treatment, and the increasing numbers of patients who have done this, there is little research that examines how doctors regard these plans.
DESIGN: We surveyed Australian intensive care doctors, using a hypothetical clinical scenario, to evaluate how potential end-of-life treatment decisions might be influenced by advance planning - the appointment of a medical enduring power of attorney (MEPA) or an advance care plan (ACP). Using open-ended questions we sought to explore the reasoning behind the doctors' decisions.
RESULTS: 275 surveys were returned (18.3% response rate). We found that opinions expressed by an MEPA and ACP have some influence on treatment decisions, but that intensive care doctors had major reservations. Most did not follow the request for palliation made by the MEPA in the hypothetical scenario.
CONCLUSIONS: Many intensive care doctors believe end-of-life decisions remain medical decisions, and MEPAs and ACPs need only be respected when they accord with the doctor's treatment decision. This study suggests a need for further education of doctors, particularly those working in intensive care, who are responsible for initiating and maintaining life support treatment.

Deficiencies and missed opportunities to formulate clinical guidelines in Australia for withholding or withdrawing life-sustaining treatment in severely disabled and impaired infants

This paper examines the few, but important legal and coronial cases concerning withdrawing or withholding life-sustaining treatment from severely disabled or critically impaired infants in Australia. Although sparse in number, the judgements should influence common clinical practices based on assessment of “best interests” but these have not yet been adopted. In particular, although courts have discounted assessment of “quality of life” as a legitimate component of determination of “best interests,” this remains a prominent component of clinical guidelines. In addition, this paper highlights the lack of uniform clinical guidelines available to medical professionals and parents in Australia when making end-of-life decisions for severely ill infants. Thus, it is argued here that there is a need for an overarching prescriptive uniform framework or set of guidelines in end-of-life decision-making for impaired infants. This would encourage greater transparency, consistency, and some degree of objectivity in an area that often appears subjective.

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.

Gardner; re BWW: Victorian Supreme Court makes landmark Australian ruling on tube feeding

• The Victorian Supreme Court has decided that artificial nutrition and hydration provided through a percutaneous gastrostomy tube to a woman in a persistent vegetative state may be withdrawn.
• The judge ruled, in line with a substantial body of international medical, ethical and legal opinion, that any form of artificial nutrition and hydration is a medical procedure, not part of palliative care, and that it is a procedure to sustain life, not to manage the dying process.
• Thus, the law does not impose a rigid obligation to administer artificial nutrition or hydration to people who are dying, without due regard to their clinical condition. The definition of key terms such as “medical treatment”, “palliative care”, and “reasonable provision of food and water” in this case will serve as guidance for end-of-life decisions in other states and territories.
• The case also reiterates the right of patients, and, when incompetent, their validly appointed agents or guardians, to refuse medical treatment.
• Where an incompetent patient has not executed a binding advance directive and no agent or guardian has been appointed, physicians, in consultation with the family, may decide to withdraw medical treatment, including artificial nutrition or hydration, on the basis that continuation of treatment is inappropriate and not in the patient’s best interests. However, Victoria and other jurisdictions would benefit from clarification of this area of the law