Christine Sanderson

Preference for place of care and place of death in palliative care: are these different questions?

Place of death is at times suggested as an outcome for palliative care services. This study aimed to describe longitudinal preferences for place of care and place of death over time for patients and their caregivers. Longitudinal paired data of patient/caregiver dyads from a prospective unblinded cluster randomised control trial were used. Patients and caregivers were separately asked by the palliative care nurse their preference at that time for place of care and place of death. Longitudinal changes over time for both questions were mapped; patterns of agreement (patient and caregiver; and preference for place of death when last asked and actual placed of death) were analysed with kappa statistics. Seventy-one patient/caregiver dyads were analysed. In longitudinal preferences, preferences for both the place of care (asked a mean of >6 times) and place of death (asked a mean of >4 times) changed for patients (28% and 30% respectively) and caregivers (31% and 30%, respectively). In agreement between patients and caregivers, agreement between preference of place of care and preferred place of death when asked contemporaneously for patients and caregivers was low [56% (κ 0.33) and 36% (κ 0.35) respectively]. In preference versus actual place of death, preferences were met for 37.5% of participants for home death; 62.5% for hospital; 76.9% for hospice and 63.6% for aged care facility. This study suggests that there are two conversations: preference for current place of care and preference for care at the time of death. Place of care is not a euphemism for place of death; and further research is needed to delineate these. Patient and caregiver preferences may not change simultaneously. Implications of any mismatch between actual events and preferences need to be explored.

Delirium prevalence, incidence, and implications for screening in specialist palliative care inpatient settings: A systematic review

Background: Delirium is a serious neuropsychiatric syndrome frequently experienced by palliative care inpatients. This syndrome is under-recognized by clinicians. While screening increases recognition, it is not a routine practice. Aim and design: This systematic review aims to examine methods, quality, and results of delirium prevalence and incidence studies in palliative care inpatient populations and discuss implications for delirium screening. Data sources: A systematic search of the literature identified prospective studies reporting on delirium prevalence and/or incidence in inpatient palliative care adult populations from 1980 to 2012. Papers not in English or those reporting the occurrence of symptoms not specifically identified as delirium were excluded. Results: Of the eight included studies, the majority (98.9%) involved participants (1079) with advanced cancer. Eight different screening and assessment tools were used. Delirium incidence ranged from 3% to 45%, while delirium prevalence varied, with a range of: 13.3%–42.3% at admission, 26%–62% during admission, and increasing to 58.8%–88% in the weeks or hours preceding death. Studies that used the Diagnostic and Statistical Manual–Fourth Edition reported higher prevalence (42%–88%) and incidence (40.2%–45%), while incidence rates were higher in studies that screened participants at least daily (32.8%–45%). Hypoactive delirium was the most prevalent delirium subtype (68%–86% of cases). Conclusion: The prevalence and incidence of delirium in palliative care inpatient settings supports the need for screening. However, there is limited consensus on assessment measures or knowledge of implications of delirium screening for inpatients and families. Further research is required to develop standardized methods of delirium screening, assessment, and management that are acceptable to inpatients and families.

Efficacy of Oral Risperidone, Haloperidol, or Placebo for Symptoms of Delirium Among Patients in Palliative Care: A Randomized Clinical Trial.

Importance Antipsychotics are widely used for distressing symptoms of delirium, but efficacy has not been established in placebo-controlled trials in palliative care. Objective To determine efficacy of risperidone or haloperidol relative to placebo in relieving target symptoms of delirium associated with distress among patients receiving palliative care. Design, Setting, and Participants A double-blind, parallel-arm, dose-titrated randomized clinical trial was conducted at 11 Australian inpatient hospice or hospital palliative care services between August 13, 2008, and April 2, 2014, among participants with life-limiting illness, delirium, and a delirium symptoms score (sum of Nursing Delirium Screening Scale behavioral, communication, and perceptual items) of 1 or more. Interventions Age-adjusted titrated doses of oral risperidone, haloperidol, or placebo solution were administered every 12 hours for 72 hours, based on symptoms of delirium. Patients also received supportive care, individualized treatment of delirium precipitants, and subcutaneous midazolam hydrochloride as required for severe distress or safety. Main Outcome and Measures Improvement in mean group difference of delirium symptom score (severity range, 0-6) between baseline and day 3. Five a priori secondary outcomes: delirium severity, midazolam use, extrapyramidal effects, sedation, and survival. Results Two hundred forty-seven participants (mean [SD] age, 74.9 [9.8] years; 85 women [34.4%]; 218 with cancer [88.3%]) were included in intention-to-treat analysis (82 receiving risperidone, 81 receiving haloperidol, and 84 receiving placebo). In the primary intention-to-treat analysis, participants in the risperidone arm had delirium symptom scores that were significantly higher than those among participants in the placebo arm (on average 0.48 Units higher; 95% CI, 0.09-0.86; P = .02) at study end. Similarly, for those in the haloperidol arm, delirium symptom scores were on average 0.24 Units higher (95% CI, 0.06-0.42; P = .009) than in the placebo arm. Compared with placebo, patients in both active arms had more extrapyramidal effects (risperidone, 0.73; 95% CI, 0.09-1.37; P = .03; and haloperidol, 0.79; 95% CI, 0.17-1.41; P = .01). Participants in the placebo group had better overall survival than those receiving haloperidol (hazard ratio, 1.73; 95% CI, 1.20-2.50; P = .003), but this was not significant for placebo vs risperidone (hazard ratio, 1.29; 95% CI, 0.91-1.84; P = .14). Conclusions and Relevance In patients receiving palliative care, individualized management of delirium precipitants and supportive strategies result in lower scores and shorter duration of target distressing delirium symptoms than when risperidone or haloperidol are added. Trial Registration anzctr.org.au Identifier: ACTRN12607000562471.

Signs of post-traumatic stress disorder in caregivers following an expected death: A qualitative study

Background: Complications of grief are an important area of investigation with potential to improve the well-being of palliative care caregivers. There has been little study of the prevalence or significance of post-traumatic stress disorder for those bereaved after an expected death. Aim: To identify evidence suggestive of post-traumatic stress disorder symptoms in a population of bereaved caregivers of patients who have died of ovarian cancer. Design: Caregivers’ recollections of their end-of-life experiences were coded and analysed, using qualitative data obtained from interviews 6 months after the patient’s death. Setting/participants: Australian Ovarian Cancer Study–Quality of Life Study is a population-based epidemiological study using mixed methods to explore caregivers’ experiences following the expected death of a woman with ovarian cancer. Thirty-two caregivers from the Australian Ovarian Cancer Study–Quality of Life Study participated in semi-structured telephone interviews 6 months post-bereavement. Results: When describing the patient’s death at their 6-month interview, all interviewees used language consistent with some degree of shock and traumatisation. For the majority, there was also evidence suggesting resilience and resolution. However, a number of interviewees describe intrusive memories associated with physical sights and sounds that they witnessed at the deathbed. Conclusions: This exploratory study demonstrates the phenomenon of the ‘shocked caregiver’. If trauma symptoms are present in bereaved carers in palliative care, it has implications for palliative care provision. Given that trauma symptoms may be distinct from prolonged grief disorder, this may also have implications for provision of bereavement counselling. Further research into this phenomenon is required.

Designing and conducting randomized controlled trials in palliative care: A summary of discussions from the 2010 clinical research forum of the Australian Palliative Care Clinical Studies Collaborative

Rigorous clinical research in palliative care is challenging but achievable. Trial participants are likely to have deteriorating performance status, co-morbidities and progressive disease. It is difficult to recruit patients, and attrition unrelated to the intervention being trialled is high. The aim of this paper is to highlight practical considerations from a forum held to discuss these issues by active palliative care clinical researchers. To date, the Australian Palliative Care Clinical Studies Collaborative (PaCCSC) has randomized more than 500 participants across 12 sites in 8 Phase III studies. Insights from the 2010 clinical research forum of the PaCCSC are reported. All active Australian researchers in palliative care were invited to present their current research and address three specific questions: (1) What has worked well? (2) What didn’t work well? and (3) How should the research be done differently next time? Fourteen studies were presented, including six double-blind, randomized, controlled, multi-site trials run by the PaCCSC. Key recommendations are reported, including guidance on design; methodologies; and strategies for maximizing recruitment and retention. These recommendations will help to inform future trial design and conduct in palliative care.

Placebo and Nocebo Effects in Randomized Controlled Trials: The Implications for Research and Practice

Placebo and nocebo effects are known to contribute significantly to the response to symptom control, including analgesia. Clinical trial methodologies using placebo controls are designed to identify the magnitude of these effects in the research context. An adequately powered, randomized, double-blind, placebo-controlled trial of ketamine in cancer pain has recently been reported, which demonstrated no net clinical benefit for ketamine over and above that of placebo. Rates of placebo and nocebo responses were high. The setting of a clinical trial provides an opportunity to quantify the nonpharmacologic aspects of patient responses to analgesia, raising important clinical and ethical issues for practice. The findings of the ketamine study are analyzed in the context of a methodological discussion of placebo and nocebo effects, what is known about the biological and psychological bases for each of these, and their implications for a clinical trial design in the palliative care setting. Along with reviewing the use of ketamine after this negative trial, clinicians need to remain aware of the strength and significance of both placebo and nocebo responses in their own practices and the biopsychosocial complexity of why and how patients actually respond to pain management strategies. The results of this study strongly reinforce the importance of the therapeutic relationship and the context of care.

What is the evidence for conducting palliative care family meetings? A systematic review

Background: Structured family meeting procedures and guidelines suggest that these forums enhance family–patient–team communication in the palliative care inpatient setting. However, the vulnerability of palliative patients and the resources required to implement family meetings in accordance with recommended guidelines make better understanding about the effectiveness of this type of intervention an important priority. Aim and design: This systematic review examines the evidence supporting family meetings as a strategy to address the needs of palliative patients and their families. The review conforms to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. Data sources: Six medical and psychosocial databases and “CareSearch,” a palliative care–specific database, were used to identify studies reporting empirical data, published in English in peer-reviewed journals from 1980 to March 2015. Book chapters, expert opinion, and gray literature were excluded. The Cochrane Collaboration Tool assessed risk of bias. Results: Of the 5051 articles identified, 13 met the inclusion criteria: 10 quantitative and 3 qualitative studies. There was low-level evidence to support family meetings. Only two quantitative pre- and post-studies used a validated palliative care family outcome measure with both studies reporting significant results post-family meetings. Four other quantitative studies reported significant results using non-validated measures. Conclusion: Despite the existence of consensus-based family meeting guidelines, there is a paucity of evidence to support family meetings in the inpatient palliative care setting. Further research using more robust designs, validated outcome measures, and an economic analysis are required to build the family meeting evidence before they are routinely adopted into clinical practice.

Pharmacovigilance in hospice/palliative care: net effect of gabapentin for neuropathic pain

Objective Hospice/palliative care patients may differ from better studied populations, and data from other populations cannot necessarily be extrapolated into hospice/palliative care clinical practice. Pharmacovigilance studies provide opportunities to understand the harms and benefits of medications in routine practice. Gabapentin, a γ-amino butyric acid analogue antiepileptic drug, is commonly prescribed for neuropathic pain in hospice/palliative care. Most of the evidence however relates to non-malignant, chronic pain syndromes (diabetic neuropathy, postherpetic neuralgia, central pain syndromes, fibromyalgia). The aim of this study was to quantify the immediate and short-term clinical benefits and harms of gabapentin in routine hospice/palliative care practice. Design Multisite, prospective, consecutive cohort. Population 127 patients, 114 of whom had cancer, who started gabapentin for neuropathic pain as part of routine clinical care. Settings 42 centres from seven countries. Data were collected at three time points—at baseline, at day 7 (and at any time; immediate and short-term harms) and at day 21 (clinical benefits). Results At day 21, the average dose of gabapentin for those still using it (n=68) was 653 mg/24 h (range 0–1800 mg) and 54 (42%) reported benefits, of whom 7 (6%) experienced complete pain resolution. Harms were reported in 39/127 (30%) patients at day 7, the most frequent of which were cognitive disturbance, somnolence, nausea and dizziness. Ten patients had their medication ceased due to harms. The presence of significant comorbidities, higher dose and increasing age increased the likelihood of harm. Conclusions Overall, 42% of people experienced benefit at a level that resulted in continued use at 21 days.

Never say die: death euphemisms, misunderstandings and their implications for practice

BACKGROUND A Massive Open Online Course (MOOC) on death and dying was conducted to open the dialogue around death and dying. In one activity, participants were asked to engage with language and to think of alternative words (or euphemisms) that are used to describe death. AIM To reflect from a nursing perspective how language enables and sometimes disguises important messages and conversations. METHODS Four hundred and seventy one participants provided 3053 euphemisms. FINDINGS Euphemisms were varied, with many providing commentary on their purpose and use. DISCUSSION As a society we have become quite creative in the use of euphemisms, but need to be mindful of misunderstandings and misinterpretations which can cause embarrassment and distress in clinical situations. CONCLUSION This paper describes some of the euphemisms that were provided, examining why they are used and how their use can be easily misconstrued in daily life and in clinical practice.

An online survey of Australian physicians reported practice with the off-label use of nebulised frusemide

BackgroundOff-label prescribing is common in palliative care. Despite inconsistent reports of the benefit of nebulised frusemide for breathlessness, its use continues to be reported.MethodsAn online survey was emailed to 249 members of the Australian and New Zealand Society of Palliative Medicine to estimate the use of nebulised frusemide for breathlessness by Australian physicians involved in palliative care in the previous 12 months.ResultsThere were 52/249 (21%) respondents to the survey. The majority (44/52; 85%) had not prescribed nebulised frusemide in the previous 12 months. The most common (18/44; 43%) reason for not prescribing nebulised frusemide was a belief that there was not enough evidence to support its use. Whilst only a few respondents (8/52; 15%) reported having used nebulised frusemide, all that had used it thought there was at least some benefit in relieving breathlessness.ConclusionThis report adds to the series of case studies reporting some benefit from nebulised frusemide in relieving breathlessnes.