BACKGROUND: The oligometastatic paradigm suggests that some patients with a limited number of metastases might be cured if all lesions are eradicated. Evidence from randomised controlled trials to support this paradigm is scarce. We aimed to assess the effect of stereotactic ablative radiotherapy (SABR) on survival, oncological outcomes, toxicity, and quality of life in patients with a controlled primary tumour and one to five oligometastatic lesions.
METHODS: This randomised, open-label phase 2 study was done at 10 hospitals in Canada, the Netherlands, Scotland, and Australia. Patients aged 18 or older with a controlled primary tumour and one to five metastatic lesions, Eastern Cooperative Oncology Group score of 0-1, and a life expectancy of at least 6 months were eligible. After stratifying by the number of metastases (1-3 vs 4-5), we randomly assigned patients (1:2) to receive either palliative standard of care treatments alone (control group), or standard of care plus SABR to all metastatic lesions (SABR group), using a computer-generated randomisation list with permuted blocks of nine. Neither patients nor physicians were masked to treatment allocation. The primary endpoint was overall survival. We used a randomised phase 2 screening design with a two-sided a of 0·20 (wherein p<0·20 designates a positive trial). All analyses were intention to treat. This study is registered with ClinicalTrials.gov, number NCT01446744.
FINDINGS: 99 patients were randomised between Feb 10, 2012, and Aug 30, 2016. Of 99 patients, 33 (33%) were assigned to the control group and 66 (67%) to the SABR group. Two (3%) patients in the SABR group did not receive allocated treatment and withdrew from the trial; two (6%) patients in the control group also withdrew from the trial. Median follow-up was 25 months (IQR 19-54) in the control group versus 26 months (23-37) in the SABR group. Median overall survival was 28 months (95% CI 19-33) in the control group versus 41 months (26-not reached) in the SABR group (hazard ratio 0·57, 95% CI 0·30-1·10; p=0·090). Adverse events of grade 2 or worse occurred in three (9%) of 33 controls and 19 (29%) of 66 patients in the SABR group (p=0·026), an absolute increase of 20% (95% CI 5-34). Treatment-related deaths occurred in three (4·5%) of 66 patients after SABR, compared with none in the control group.
INTERPRETATION: SABR was associated with an improvement in overall survival, meeting the primary endpoint of this trial, but three (4·5%) of 66 patients in the SABR group had treatment-related death. Phase 3 trials are needed to conclusively show an overall survival benefit, and to determine the maximum number of metastatic lesions wherein SABR provides a benefit.
FUNDING: Ontario Institute for Cancer Research and London Regional Cancer Program Catalyst Grant.
BACKGROUND: Every year, 2.6 million babies are stillborn worldwide. Despite these figures, stillbirth remains a relatively ignored public health issue. The wider literature suggests that this is due to the stigma associated with stillbirth. The stigma of stillbirth is seen as possibly one of the greatest barriers in reducing stagnant stillbirth rates and supporting bereaved parents. However, empirical evidence on the extent, type, and experiences of stillbirth stigma remain scarce.
AIM: This study aimed to explore the stigma experiences of bereaved parents who have endured a stillbirth.
METHODS: An online survey of closed and open-questions with 817 participants (n=796 female; n=17 male) was conducted in high-income countries.
FINDINGS: Based on self-perception, 38% of bereaved parents believed they had been stigmatised due to their stillbirth. Thematic data analysis revealed several themes consistent with Link and Phelan's stigma theory- labelling, stereotyping, status loss and discrimination, separation, and power. One more theme outside of this theory- bereaved parents as agents of change was also discovered.
CONCLUSION: Bereaved parents after stillbirth may experience stigma. Common experiences included feelings of shame, blame, devaluation of motherhood and discrimination. Bereaved parents also reported the silence of stillbirth occurred during their antenatal care with many health care providers not informing them about the possibility of stillbirth. Further research needs to be undertaken to explore further the extent and type of stigma felt by bereaved parents after stillbirth, and how stigma is impacting the health care professional disseminating and distributing resources to pregnant women.
The sudden and unexpected nature of fatal work incidents can leave family members with a strong need to know how and why the worker died. Forty Australian family members were interviewed to identify the information sought following fatal work incidents and explore the factors enhancing or impairing satisfaction with the account of the death. Findings demonstrated that employers tended to divert responsibility to the worker, to mask underlying systemic failures. Satisfaction was enhanced if family members believed a sense of justice was attained and formal investigations were able to expose the truth and those responsible for the death were identified.
OBJECTIVES: Report the implementation, user evaluation and key outcome measures of an educational intervention-the iValidate educational programme-designed to improve engagement in shared decision-making by health professionals caring for patients with life-limiting illness (LLI).
DESIGN: Prospective, descriptive, cohort study.
PARTICIPANTS: Health professionals working in acute care settings caring for patients with an LLI.
MAIN OUTCOMES MEASURED: Participant evaluation of learning outcomes for communication skills and shared decision-making; demographic data of participants attending education workshops; and documentation of patients with LLI goals of management, including patient values and care decision based on area in acute care and seniority of doctor.
RESULTS: The programme was well accepted by participants. Participant evaluations demonstrated self-reported improved confidence in the areas of patient identification, information gathering to ascertain patient values and shared decision-making. There was strong agreement with the course-enhanced knowledge of core communication skills and advanced skills such as discussing mismatched agendas.
CONCLUSIONS: We described the educational pedagogy, implementation and key outcome measures of the iValidate education programme, an intervention designed to improve person-centred care for patients with an LLI. A targeted education programme could produce cultural and institutional change for vulnerable populations within a healthcare institution. A concurrent research programme suggests effectiveness within the current service and the potential for transferability.
An advance care directive (ACD) is a written expression of a person's preferences in relation to health care, which can appoint a trusted substitute decision-maker, describe personal values, and make explicit decisions consenting to, or refusing, certain treatments. When a person with a directive refusing life-sustaining treatments attempts suicide, opinions are divided as to the degree to which health care staff are bound by such a directive. In this section, I will provide an example of a patient who presents to hospital after attempting suicide who has a valid ACD refusing life-sustaining treatment. I will then describe the legislation relevant to ACDs in Victoria, Australia and ethical arguments relating to the application of an ACD in this context. I will present a decision-making algorithm for health care staff faced with the difficult decisions arising from such a presentation.
This paper reports the impact of a major life event-death-on the physical, psychological and social well-being of the deceased's close friends. We utilised data from a large longitudinal survey covering a period of 14 years (2002-2015) consisting a cohort of 26,515 individuals in Australia, of whom 9,586 had experienced the death of at least one close friend. This longitudinal cohort dataset comprises responses to the SF-36 (health related quality of life measure) and allowed for analysis of the short and longer-term impacts of bereavement. In order to manage the heterogeneity of the socio-demographics of respondents who did/not experience a death event, we use a new and robust approach known as the Entropy Balancing method to construct a set of weights applied to the bereaved group and the control group (the group that did not experience death). This approach enables us to match the two groups so that the distribution of socio-demographic variables between the two groups are balanced. These variables included gender, age, marital status, ethnicity, personality traits, religion, relative socio-economic disadvantage, economic resources, and education and occupation and where they resided. The data show, for the first time, a range of negative and enduring consequences experienced by people following the death of a close friend. Significant adverse physical and psychological well-being, poorer mental health and social functioning occur up to four years following bereavement. Bereaved females experienced a sharper fall in vitality, suffered greater deterioration in mental health, impaired emotional and social functioning than the male counterparts up to four years after the death. The data show that the level of social connectedness plays an important role in bereavement outcomes. Specifically, we found that less socially active respondents experienced a longer deterioration in physical and psychological health. Finally, we found evidence that the death of a close friend lowered the respondent's satisfaction with their health. Since death of friends is a universal phenomenon, we conclude the paper by reflecting on the need to recognise the death of a close friend as a substantial experience, and to offer support and services to address this disenfranchised grief. Recognising bereaved friends as a group experiencing adverse outcomes can be used internationally to prompt health and psychological services to assist this specific group, noting that there may be substantial longevity to the negative sequelae of the death of a friend. Facilitating bereaved people's support networks may be a fruitful approach to minimising these negative outcomes.
OBJECTIVE: This article sought to explore ethical issues associated with prioritization decisions in palliative care.
METHODS: As part of a broader series of studies of triage in palliative care, this qualitative substudy was conducted via semi-structured focus groups and individual interviews. Transcripts were subjected to thematic analysis.
SETTING/PARTICIPANTS:: Twenty health professionals working across disciplines (primary, specialist; medicine, nursing, and allied health), service types (inpatient, hospital liaison, and community), and locations (metropolitan and rural) in Victoria, Australia.
RESULTS:: Four themes emerged from the data: (1) Clinicians understood the tension between maintaining service quality with the delivery of a compromised service that sought to respond to demand. (2) They were aware of the influences of relationships and responsibilities upon patient waiting list prioritization, and (3) reported a hierarchy of suffering with certain types of clinical problems viewed as more urgent than others, for example, pain being more urgent than existential distress. (4) Clinicians noted a lack of transparency around waiting lists as they currently exist.
CONCLUSIONS: This study revealed key ethical decision-making issues associated with prioritizing access to palliative care services. Making explicit the processes and influences upon decision-making provides greater transparency of health-care utilization at the end of life.
BACKGROUND: High quality perinatal bereavement care is critical for women and families following stillbirth or newborn death. It is a challenging area of practice and a difficult area for guideline development due to a sparse and disparate evidence base.
AIM: We present an overview of the newly updated Perinatal Society of Australia and New Zealand/Stillbirth Centre of Research Excellence guideline for perinatal bereavement care. The guideline aims to provide clear guidance for maternity health care providers and their services to support the provision of care that meets the needs of bereaved parents.
DISCUSSION: The Guideline for Respectful and Supportive Perinatal Bereavement Care is underpinned by a review of current research combined with extensive stakeholder consultation that included parents and their organisations and clinicians from a variety of disciplines. The Guideline contains 49 recommendations that reflect five fundamental goals of care: good communication; shared decision-making; recognition of parenthood; effective support; and organisational response.
CONCLUSION: Best available research, parents' lived experiences and maternity care providers' insights have contributed to a set of implementable recommendations that address the needs of bereaved parents.
The Voluntary Assisted Dying Act 2017 (Vic) (VAD Act) will become operational on 19 June 2019. A designated 18-month implementation period has seen an Implementation Taskforce appointed, and work is underway on projects including developing clinical guidance, models of care, medication protocols and training for doctors participating in voluntary assisted dying (VAD). While some have written on the scope of, and reaction to, the VAD legislation, there has been very little commentary on its implementation. Yet, important choices must be made about translating these laws into clinical practice. These choices have major implications for doctors and other health professionals (including those who choose not to facilitate VAD), patients, hospitals and other health providers. This article considers some key challenges in implementing Victoria's VAD legislation.
Objective: Adolescent and young adults' (AYAs) involvement in advance care planning and end-of-life discussions may enhance the decision-making process, reduce stress and improve the patient's quality of life. Given the importance of establishing adequate communication and having culturally-appropriate tools to introduce advance care planning, our paper will describe the cross-cultural adaptation of the advance care planning guide, Voicing My CHOiCES™ in Australia and in Brazil.
Methods: In Brazil, the process involved initially translating the document to Portuguese followed by evaluation by a group of providers and patients (aged 18-39) undergoing cancer treatment. The document was revised based on the feedback received, then back-translated to English and discussed with Voicing My CHOiCES™ 'authors to refine the final version in Portuguese. In Australia, a multi-perspective interview-based study was undertaken with AYA cancer patients/survivors (aged 15-25), siblings, parents, and a range of healthcare providers from the oncology setting, to determine the perceived acceptability of the tool within the Australian clinical context.
Results: These interviews pointed to a variety of recommended adaptations ranging from the aesthetic and linguistic, through to the re-structuring of content within the tool. Adaptations for the Australian setting were then revised in an iterative capacity within several focus groups of AYA participants and healthcare providers.
Conclusions: The processes used in both countries highlight ways to engage youth living with a life-limiting illness in conversations about advance care planning and how to develop culturally-appropriate clinical tools.
The care of people with life-limiting illnesses is increasingly moving away from an acute setting into the community. Thus, the caregiver role is growing in significance and complexity. The importance of preparing and supporting family caregivers is well established; however, less is known about the impact of rurality on preparedness and how preparedness shapes the caregiving continuum including bereavement. The aim of this study, conducted in 2017, was to explore how bereaved rural family palliative carers described their preparedness for caregiving. Interpretative phenomenological analysis was employed following semi-structured interviews with four women and six men (N = 10, aged 55-87 years). Participants were recruited voluntarily through past engagement with a Regional Specialist Palliative Care Consultancy Service in Australia. The experiences of caregivers illustrated a lack of preparedness for the role and were characterised by four major themes: Into the unknown, Into the battle, Into the void and Into the good. The unknown was associated with a lack of knowledge and skills, fear, prognostic communication, exclusion, emotional distress and grief experience. Battles were experienced in a number of ways: intrapsychically (existing within the mind), through role conflict and identity; interpersonally with the patient, clinician and family; and systematically (against health, financial and legal systems). The void was felt during isolation in caregiving, in relinquishing the role, in bereavement and in feeling abandoned by service providers. Positive experiences, such as being valued, included and connected to supports, and the fostering of closer relationships and deeper meaning, occurred less frequently but temporarily buffered against negative aspects. Implications from this study for policy and practice centre on the frequent, purposeful and genuine engagement of caregivers. Services and clinicians are encouraged to enhance communication practices, promote meaningful inclusion, address access issues and enhance support at role relinquishment.
In 2016 a Parliamentary Committee in Victoria, Australia, recommended the legalization of physician-assisted suicide and voluntary euthanasia. Its report was deeply flawed. Its treatment of key objections to legalization, both principled and practical, was superficial and selective. The Voluntary Assisted Dying Act, passed by the Victorian Parliament in November 2017, is built on the report's shaky foundations.
Severe chronic breathlessness in advanced chronic obstructive pulmonary disease (COPD) is undertreated and few patients access specialist palliative care in the years before death. This study aimed to determine if symptom palliation or a palliative approach were delivered during the final hospital admission in which death occurred. Retrospective medical record audits were completed at two Australian hospitals, with all patients who died from COPD over 12 years between 1 January 2004 and 31 December 2015 included. Of 343 patients included, 217 (63%) were male with median age 79 years (IQR 71.4–85.0). Median respiratory function: FEV1 0.80L (42% predicted), FVC 2.02L (73% predicted) and DLco 9 (42% predicted). 164 (48%) used domiciliary oxygen. Sixty (18%) patients accessed specialist palliative care and 17 (5%) wrote an advance directive prior to the final admission. In the final admission, 252 (74%) patients had their goal of care changed to aim for comfort (palliation) and 99 (29%) were referred to specialist palliative care. Two hundred and eighty-six (83%) patients received opioids and 226 (66%) received benzodiazepines, within 1 or 2 days respectively after admission to palliate symptoms. Median starting and final opioid doses were 10 mg (IQR = 5–20) and 20 mg (IQR = 7–45) oral morphine equivalent/24 h. Hospital site and year of admission were significantly associated with palliative care provision. Respiratory and general physicians provided a palliative approach to the majority of COPD patients during their terminal admission, however, few patients were referred to specialist palliative care. Similarly, there were missed opportunities to offer symptom palliation and a palliative approach in the years before death.
BACKGROUND: Opioid errors are a leading cause of patient harm and adversely impact palliative care inpatients' pain and symptom management. Yet, the factors contributing to opioid errors in palliative care are poorly understood. Identifying and better understanding the individual and system factors contributing to these errors is required to inform targeted strategies.
OBJECTIVES: To explore palliative care clinicians' perceptions of the factors contributing to opioid errors in Australian inpatient palliative care services.
DESIGN: A qualitative study using focus groups or semi-structured interviews.
SETTINGS: Three specialist palliative care inpatient services in New South Wales, Australia.
PARTICIPANTS: Inpatient palliative care clinicians who are involved with, and/or have oversight of, the services' opioid delivery or quality and safety processes.
METHODS: Deductive thematic content analysis of the qualitative data. The Yorkshire Contributory Factors Framework was applied to identify error-contributing factors.
FINDINGS: A total of 58 clinicians participated in eight focus groups and 20 semi-structured interviews. Nine key error contributory factor domains were identified, including: active failures; task characteristics of opioid preparation; clinician inexperience; sub-optimal skill mix; gaps in support from central functions; the drug preparation environment; and sub-optimal clinical communication.
CONCLUSION:: This study identified multiple system-level factors contributing to opioid errors in inpatient palliative care services. Any quality and safety initiatives targeting safe opioid delivery in specialist palliative care services needs to consider the full range of contributing factors, from individual to systems/latent factors, which promote error-causing conditions.
The objectives of this study were to explore the goodness of fit between the bereaved peoples' needs and the support offered by their social networks; to ascertain whether this support was experienced as helpful or unhelpful by bereaved people; and to explore both the types of social networks that offer effective support and the characteristics of the communities that encourage and nurture such networks. This study was based on qualitative interviews from twenty bereaved people, in Western Australia, interviewed in 2013. A framework analysis of these interviews was undertaken using a deductive approach based on the goodness of fit framework. Much of this support is provided informally in community settings by a range of people already involved in the everyday lives of those recently bereaved; and that support can be helpful or unhelpful depending on its amount, timing, function and structure. Improving the fit between the bereaved person's needs and the support offered may thus involve identifying and enhancing the caring capacity of existing networks. An important strategy for achieving this is to train community members in mapping and developing these naturally occurring networks. Some such networks will include relationships of long standing, others may be circles of care formed during a period of caring. Peer support bereavement networks develop from these existing networks and may also recruit new members who were not part of the caring circle. The findings endorse social models of bereavement care that fit within a public health approach rather than relying solely on professional care. As exemplified by Compassionate Communities policies and practices, establishing collaboration between community networks and professional services is vital for effective and sustainable bereavement care.
Objective: the aim of this study was to map end-of-life care in acute hospital settings against Elements 1-5 of the Australian Commission on Safety and Quality in Health Care's (ACSQHC) Essential Elements for Safe and High-Quality End-of-Life Care.
Methods: A retrospective medical record audit of deceased in-patients was conducted from 2016 at one public (n = 320) and one private (n = 132) hospital in Melbourne, Australia. Ten variables, key to end-of-life care according to the ACSQHC's Elements 1-5 were used to evaluate end-of-life care.
Results: Most patients (87.2%) had a limitation of medical treatment. In 91.97% (P < 0.0001) of cases, a written entry indicating poor prognosis preceded a documented decision to provide end-of-life care, with a documented decision noted in 81.1% of cases (P < 0.0001). Evidence of pastoral care involvement was found in 41.6% of cases (P < 0.0001), with only 33.1% of non-palliative care patients referred to specialist palliative care personnel (P = 0.059). An end-of-life care pathway was used in 51.1% of cases (P < 0.0001).
Conclusion: There is clear scope for improvement in end-of-life care provision. Health services need to mandate and operationalise Elements 1-5 of the ACSQHC's Essential Elements into care systems and processes, and ensure nationally consistent, high-quality end-of-life care.What is known about the topic? Acute care settings provide the majority of end-of-life care. Despite the ACSQHC's Ten Essential Elements, little is known about whether current end-of-life care practices align with recommendations. What does this paper add? There is room for improvement in providing patient-centred care, increasing family involvement and teamwork, describing and enacting goals of care and using triggers to prompt care. Differences between public and private hospitals may be the result of differences in standard practice or policy and differences in cultural diversity.What are the implications for practitioners? The Essential Elements need to be mandated and operationalised into mainstream care systems and processes as a way of ensuring safe and high-quality end-of-life care.
OBJECTIVE: To implement a best-practice intervention offering deceased organ donation, testing whether it increased family consent rates.
DESIGN: A multicentre before-and-after study of a prospective cohort compared with pre-intervention controls.
SETTING: Nine Australian intensive care units.
PARTICIPANTS: Families and health care professionals caring for donor-eligible patients without registered donation preferences or aged = 16 years.
INTERVENTION: A multicomponent intervention including offers of deceased organ donation from specially trained designated requesters using a structured conversation separate to end-of-life discussions.
MAIN OUTCOME MEASURE: Proportion of families consenting to organ donation.
RESULTS: Consent was obtained in 87/164 cases (53%) during the intervention period compared with 14/25 cases (56%) pre-intervention (P = 0.83). The odds ratio (OR) of obtaining consent during the intervention period relative to preintervention was 1.13 (95% CI, 0.48-2.63; P = 0.78). During the intervention period, designated requesters obtained consent in 55/98 cases (56%), compared with 32/66 cases (48%) in which the medical team managing patient care raised donation (P = 0.34). Factors independently associated with increased consent were: family-raised organ donation (OR, 4.34; 95% CI, 1.79-10.52; P = 0.001), presence of an independent designated requester (OR, 3.84; 95% CI, 1.35- 10.98; P = 0.012), and multiple donation conversations per case (OR, 3.35; 95% CI, 1.93-5.81; P < 0.001). Consent decreased when patients were of non-Christian religion (OR, 0.18; 95% CI, 0.04-0.91; P = 0.038) and end-of-life and donation meetings were separate (OR, 0.38; 95% CI, 0.16-0.89; P = 0.026).
CONCLUSION: Implementation of a multicomponent intervention did not increase consent rates for organ donation, although some components of the intervention exerted significant effect.
BACKGROUND: People with intellectual disabilities at the end of life are at risk of receiving inadequate and inequitable end-of-life care. This study explores their unmet needs, opportunities for person-centred care and experiences of health service use.
METHODS: Qualitative interviews with 26 experienced health professionals and carers were used to explore their patients' and residents' unmet needs and end-of-life care options and to outline strategies to support them.
RESULTS: A range of challenges and unmet needs experienced by people with intellectual disabilities are presented in themes: (1) accommodation setting at the end of life: dying 'at home'; (2) personal factors and networks: a circle of support; (3) end-of-life medical care and decision-making. Strategies to facilitate good end-of-life care and a model of care are presented.
CONCLUSIONS: Well-prepared and collaborative disability and health service workforces are needed, together with flexible and adequate end-of-life funding to ensure compassionate and person-centred care.
BACKGROUND: Paramedics may be involved in the care of patients experiencing a health crisis associated with palliative care. However, little is known about the paramedic's role in the care of these patients.
AIM: To describe the incidence and nature of cases attended by paramedics and the care provided where the reason for attendance was associated with a history of palliative care.
DESIGN: This is a retrospective cohort study.
SETTING/PARTICIPANTS: Adult patients (aged >17 years) attended by paramedics in the Australian state of Victoria between 1 July 2015 and 30 June 2016 where terms associated with palliative care or end of life were recorded in the patient care record. Secondary transfers including inter-hospital transport cases were excluded.
RESULTS: A total of 4348 cases met inclusion criteria. Median age was 74 years (interquartile range 64–83). The most common paramedic assessments were ‘respiratory’ (20.1%), ‘pain’ (15.8%) and ‘deceased’ (7.9%); 74.4% (n = 3237) were transported, with the most common destination being a hospital (99.5%, n = 3221). Of those with pain as the primary impression, 359 (53.9%) received an analgesic, morphine, fentanyl or methoxyflurane, and 356 (99.2%) were transported following analgesic administration. Resuscitation was attempted in 98 (29.1%) of the 337 cases coded as cardiac arrest. Among non-transported cases, there were 105 (9.6%) cases where paramedics re-attended the patient within 24 h of the previous attendance.
CONCLUSION: Paramedics have a significant role in caring for patients receiving palliative care. These results should inform the design of integrated systems of care that involve ambulance services in the planning and delivery of community-based palliative care.
BACKGROUND: Life expectancy for persons with intellectual disability has increased dramatically over the past decade, which has seen an associated rise in the need for end-of-life care. However, little is known regarding how end-of-life affects the individual's personal relationships with family, friends and staff.
METHODS: Focus group interviews were undertaken with 35 disability support workers from four rural and two metropolitan locations in NSW and Queensland, Australia. A semi-structured interview guide was used, with a focus on the gaining an understanding of the impact that end-of-life has on personal relationships for persons with intellectual disability.
RESULTS: The thematic analysis identified three key thematic areas: Relationships with Family, Relationships with Friends and Staff Roles. Relationships with Family had three sub-themes of 'Active and Ongoing', 'Active but Limited' and 'After Death'. Relationships with Friends had two sub-themes of 'Positive Experiences' and 'Negative Experiences', and Staff Roles had two sub-themes of 'Loss of Contact' and 'Default Decision Making'.
DISCUSSION: The frequency of family contact was not reported as increasing or decreasing following the diagnosis of a life-ending illness and during an individual's end-of-life. A lack of counselling support was noted as potentially impairing the individual's friends' ability to cope with death. Staff also reported a number of concerns regarding how their relationships with the individual changed, particularly when end-of-life entailed potential movement of the individual with intellectual disability to a new residential setting.