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1.  Patterns of health care utilization preceding a colorectal cancer diagnosis are strong predictors of dying quickly following diagnosis 
BMC Palliative Care  2015;14:2.
Understanding the predictors of a quick death following diagnosis may improve timely access to palliative care. The objective of this study was to explore whether factors in the 24 months prior to a colorectal cancer (CRC) diagnosis predict a quick death post-diagnosis.
Data were from a longitudinal study of all adult persons diagnosed with CRC in Nova Scotia, Canada, from 01Jan2001-31Dec2005. This study included all persons who died of any cause by 31Dec2010, except those who died within 30 days of CRC surgery (n = 1885 decedents). Classification and regression tree models were used to explore predictors of time from diagnosis to death for the following time intervals: 2, 4, 6, 8, 12, and 26 weeks from diagnosis to death. All models were performed with and without stage at diagnosis as a predictor variable. Clinico-demographic and health service utilization data in the 24 months pre-diagnosis were provided via linked administrative databases.
The strongest, most consistent predictors of dying within 2, 4, 6, and 8 weeks of CRC diagnosis were related to health services utilization in the 24 months prior to diagnosis: i.e., number of specialist visits, number of days spent in hospital, and number of family physician visits. Stage at diagnosis was the strongest predictor of dying within 12 and 26 weeks of diagnosis.
Identifying potential predictors of a short timeframe between cancer diagnosis and death may aid in the development of strategies to facilitate timely and appropriate referral to palliative care upon a cancer diagnosis.
PMCID: PMC4324424
Digestive system neoplasms; Palliative care; Diagnosis; Delivery of health care
2.  Initial development and psychometric testing of an instrument to measure the quality of children’s end-of-life care 
BMC Palliative Care  2015;14:1.
The field of pediatric palliative care is hindered by the lack of a well-defined, reliable, and valid method for measuring the quality of end-of-life care.
The study purpose was to develop and test an instrument to measure mothers’ perspectives on the quality of care received before, at the time of, and following a child’s death. In Phase 1, key components of quality end-of-life care for children were synthesized through a comprehensive review of research literature. These key components were validated in Phase 2 and then extended through focus groups with bereaved parents. In Phase 3, items were developed to assess structures, processes, and outcomes of quality end-of-life care then tested for content and face validity with health professionals. Cognitive testing was conducted through interviews with bereaved parents. In Phase 4, bereaved mothers were recruited through 10 children’s hospitals/hospices in Canada to complete the instrument, and psychometric testing was conducted.
Following review of 67 manuscripts and 3 focus groups with 10 parents, 141 items were initially developed. The overall content validity index for these items was 0.84 as rated by 7 health professionals. Based on feedback from health professionals and cognitive testing with 6 parents, a 144-item instrument was finalized for further testing. In Phase 4, 128 mothers completed the instrument, 31 of whom completed it twice. Test-retest reliability, internal consistency, and construct validity were demonstrated for six subscales: Connect With Families, Involve Parents, Share Information With Parents, Share Information Among Health Professionals, Support Parents, and Provide Care at Death. Additional items with content validity were grouped in four domains: Support the Child, Support Siblings, Provide Bereavement Follow-up, and Structures of Care. Forty-eight items were deleted through psychometric testing, leaving a 95-item instrument.
There is good initial evidence for the reliability and validity of this new quality of end-of-life care instrument as a mechanism for evaluative feedback to health professionals, health systems, and policy makers to improve children’s end-of-life care.
Electronic supplementary material
The online version of this article (doi:10.1186/1472-684X-14-1) contains supplementary material, which is available to authorized users.
PMCID: PMC4305389  PMID: 25620884
End-of-life; Instrument development; Mothers; Pediatrics; Quality care
3.  Attitudes and referral patterns of lung cancer specialists in Europe to Specialized Palliative Care (SPC) and the practice of Early Palliative Care (EPC) 
BMC Palliative Care  2014;13(1):59.
To examine availability of Palliative Care (PC) services and referral patterns of European Lung cancer specialists to PC.
All members of the EORTC Lung Cancer Group (LCG) were asked via email to participate in an on-line survey.
50 out of 170 (29.4%) replied: 24 medical oncologists, 14 radiation/clinical oncologists, 11 pulmonologists and 1 thoracic surgeon. All but two of respondents (96%) had access to at least one component of PC services. In terms of referral of patients to PC almost 75% of respondents would refer most of their patients when there were no treatment options or at the end of life, while only 22% would refer patients at earlier stages of disease. Barriers for referral to PC were negative attitudes of patients to PC (26%), lack of availability of PC services (20%), lack of expertise of PC physicians(18%), the belief that referral to PC signifies abandoning patients (8%), and that PC specialists discourage active oncological therapy (8%). Whilst most of the respondents expressed positive attitudes, 12-22% had overtly negative attitudes towards PC. Seventy-eight (78%) of respondents expressed an interest to participate in a trial of early PC (EPC).
Despite good availability of SPC services at institutions of members of the EORTC LCG, and most respondents expressing positive attitudes towards PC, their practice involved referral of patients to PC late in the disease trajectory, hence Lung Cancer specialists in Europe have not adopted the practice of EPC concurrent with active oncological care.
Electronic supplementary material
The online version of this article (doi:10.1186/1472-684X-13-59) contains supplementary material, which is available to authorized users.
PMCID: PMC4279692  PMID: 25550683
Lung cancer specialists; Referrals; Attitudes; Specialized palliative care
4.  Care planning needs of palliative home care clients: Development of the interRAI palliative care assessment clinical assessment protocols (CAPs) 
BMC Palliative Care  2014;13(1):58.
The interRAI Palliative Care (interRAI PC) assessment instrument provides a standardized, comprehensive means to identify person-specific need and supports clinicians to address important factors such as aspects of function, health, and social support. The interRAI Clinical Assessment Protocols (CAPs) inform clinicians of priority issues requiring further investigation where specific intervention may be warranted and equip clinicians with evidence to better inform development of a person-specific plan of care. This is the first study to describe the interRAI PC CAP development process and provide an overview of distributional properties of the eight interRAI PC CAPs among community dwelling adults receiving palliative home care services.
Secondary data analysis used interRAI PC assessments (N = 6,769) collected as part of regular clinical practice at baseline (N = 6,769) and follow-up (N = 1,000). Clients across six regional jurisdictions in Ontario, Canada, assessed to receive palliative homecare services between 2006 and 2011 were included (mean age 70.0 years; ±13.4 years). Descriptive analyses focused on the eight interRAI PC CAPs: Fatigue, Sleep Disturbance, Nutrition, Pressure Ulcers, Pain, Dyspnea, Mood Disturbance and Delirium.
The majority of clients triggered at least one CAP while two thirds triggered two or more. Triggering rates ranged from 74% for the Fatigue CAP to less than 15% for the Delirium and Pressure Ulcers CAPs. The hierarchical CAP triggering structure suggested Fatigue and Dyspnea CAPs were persistent issues prevalent among the majority of clients while Delirium and Pressure Ulcers CAPs rarely trigger in isolation and most often trigger later in the illness trajectory.
When any of the eight interRAI PC CAPs are triggered, clinicians should take notice. CAPs triggered at high rates such as fatigue, dyspnea, and pain warrant increased attention for the majority of clients. Consideration of triggered CAPs provide evidence to inform a collaborative decision making process on whether or not issues raised by the CAPs should be addressed in the plan of care. Integrating evidence from the interRAI PC CAPs into the clinical decision making process support care planning to address client strengths, preferences and needs with greater acuity.
PMCID: PMC4279598  PMID: 25550682
5.  Death wishes and explicit requests for euthanasia in a palliative care hospital: an analysis of patients files 
BMC Palliative Care  2014;13(1):53.
In the current public debate in France about end-of-life and legalization of euthanasia, palliative care is considered as a suitable answer or an alternative or even a supplement to euthanasia. The debate is based on opinion surveys, partly because there is a lack of objective data about the incidence of euthanasia requests (ER) in palliative care settings. The aim of this study was to collect, classify and quantify the expressions of wishes to die (WD), based on computerized files for patients admitted to an 81-bed palliative care hospital (PCH) in Paris during 2010–2011.
Two researchers analyzed the carers’ notes extracted on the basis of containing the words “wish to die”, “euthanasia” or any expressions relating to death. Notes related to WD and the corresponding patients were then classified in the order: ER, suicidal thought (ST) and other wish to die (OWD). Repeated ER were qualitatively analyzed according to a grid.
We found that 195 of the 2157 patients (9%) expressed a WD: 61 (3%) expressed an ER; 15 (1%) described ST and 119 (6%) expressed an OWD without requiring acting. The WD group was predominantly female, stayed longer in the hospital (median 24 vs. 13 days), and consumed more anxiolytics and antidepressants. None of age, disease or marital status was associated with ER. More women and widows expressed an OWD. Twenty-six ER patients also expressed an OWD and two a ST. Six patients repeated their ER: all had poorly controlled symptoms with repercussions for their mental state.
Our data show the existence of various expressions of WD with a low incidence of ER in a French PCH. The observation of WD including ER is suggestive of good communication between the patients and the care teams. Independent of the changeability of expressions of WD, their very existence should lead to a consideration of the dynamic changes in these WD, and to care staff paying additional attention to the individual, their suffering and the context.
PMCID: PMC4256797  PMID: 25484624
Palliative care; Palliative care hospital; Euthanasia requests; Wish to die; Suicidal thought
6.  Experiences of patients, family and professional caregivers with Integrated Palliative Care in Europe: protocol for an international, multicenter, prospective, mixed method study 
BMC Palliative Care  2014;13(1):52.
The number of people living with advanced cancer and chronic disease has increased worldwide. Many of these patients could benefit from palliative care, focusing on optimising the quality of life of patients and their families facing problems resulting from life-threatening diseases. However, fragmentation and discontinuity of palliative care services often result in suboptimal palliative care. In order to overcome these problems, models using an integrated care approach are increasingly advocated in palliative care services. Although several models and definitions of Integrated Palliative Care (IPC) have been developed, the effects of integrated care are still under-investigated. Knowledge of the key components that constitute successful palliative care integration is still lacking. This mixed methods study will examine the experiences of patients, family caregivers and professional caregivers in order to provide insight into the mechanisms that constitute successful palliative care integration.
Prospective multiple embedded case study. Three to five integrated palliative care initiatives will be selected in Belgium, Germany, Hungary, The Netherlands and the United Kingdom. Data collection will involve Social Network Analysis (SNA), a patient diary, semi-structured interviews, and questionnaires: Palliative care Outcome Scale (POS), Canhelp Lite, Caregiver Reaction Assessment (CRA). Patients and family caregivers will be followed in 4 consecutive contact moments over 3 months. The diary will be kept weekly by patients. One focus group per initiative will be conducted with professional caregivers. Interviews and focus groups will be tape recorded, transcribed and qualitatively analysed using NVivo 10. SPSS Statistics 20 will be used for statistical analysis.
This study will provide valuable knowledge about barriers, opportunities and good practices in palliative care integration in the selected initiatives across countries. This knowledge can be used in the benchmark of integrated palliative care initiatives across Europe. It will add to the scientific evidence for IPC services internationally and will contribute to improvements in the quality of care and the quality of living and dying of severely ill patients and their relatives in Europe.
Electronic supplementary material
The online version of this article (doi:10.1186/1472-684X-13-52) contains supplementary material, which is available to authorized users.
PMCID: PMC4254197  PMID: 25473377
Palliative care; Integrated care; Patient experiences; Mixed method
7.  Use of chemotherapy at the end of life in Turkey 
BMC Palliative Care  2014;13(1):51.
An increasing number of patients receive palliative chemotherapy near the end of life. The aim of this study is to evaluate the aggressiveness of chemotherapy in Turkish individuals near the end of life.
Patients diagnosed with solid tumors and died from 2010 to 2011 in the medical oncology department of Akdeniz University were included in the study. Data about the diagnosis, treatment details and imaging procedures were collected.
Three hundred and seventy-three people with stage IV solid tumors died from 2010 to 2011 in our clinic. Eighty-nine patients (23.9%) patients underwent chemotherapy in the last month of life while 39 patients (10.5%) received chemotherapy in the last 14 days. The probability of undergoing chemotherapy in the last month of life was influenced by: age, ‘newly diagnosed’ patients, and performance status. There was no significant association of chemotherapy in the last month of life with gender and tumor type. Having a PET-CT scan did not alter the chemotherapy decision.
In conclusion, chemotherapy used in the last month of life in a tertiary care center of Turkey is high. Increasing quality of life should be a priority near the end of life and physicians should consider ceasing chemotherapy and direct the patient to early palliative care.
PMCID: PMC4247666  PMID: 25435808
Chemotherapy; End of life; Terminally ill; Cancer
8.  Palliative radiotherapy utilization for cancer patients at end of life in British Columbia: retrospective cohort study 
BMC Palliative Care  2014;13(1):49.
The use of palliative radiotherapy (PRT) is variable in advanced cancer. Little is known about PRT utilization by end-of-life (EOL) cancer patients in Canada. This study examined the PRT utilization rates and factors associated with its use in a cohort of cancer patients who died in British Columbia (BC).
BC residents with invasive cancer who died between April 1, 2010 and March 31, 2011 were included in the study. Their cancer registry and radiotherapy treatment records were extracted from the BC Cancer Agency information systems and linked for the analysis. The PRT utilization rates by age, sex, primary cancer diagnosis, geographic region, survival time and travel time to the cancer centre were examined. Multivariable logistic regression was used to determine the factors that influenced the PRT utilization rates.
Of the 12,300 decedents in the study 2,669 (21.7%) had received at least one course of PRT in their last year of life. The utilization rates dropped to 5.0% and 2.2% in the last 30 and 14 days of life, respectively. PRT utilization varied across diagnosis and was highest for lung cancer (45.7%) and lowest for colorectal cancer (8.9%). The rates also varied by age, survival time and travel time to the nearest radiotherapy centre. There was a greater odds of receiving PRT for those with primary lung cancer, survival time between 1.5-26 months from diagnosis or living within 2 hours from a cancer centre. The 85+ age group was least likely to receive PRT in their last year of life.
This study found PRT utilization rates of EOL cancer decedents to be variable across the province of BC. Age, diagnosis, survival time and travel time to the nearest radiotherapy centre were found to influence the odds of PRT treatment. Further work is still needed to establish the appropriate PRT utilization rates for the EOL cancer population.
Electronic supplementary material
The online version of this article (doi:10.1186/1472-684X-13-49) contains supplementary material, which is available to authorized users.
PMCID: PMC4240806  PMID: 25419181
Palliative radiotherapy; Radiation therapy; End of life care; End-stage cancer
9.  Corticosteroids in palliative care - perspectives of clinicians involved in prescribing: a qualitative study 
BMC Palliative Care  2014;13(1):50.
Corticosteroids are commonly prescribed in palliative care for alleviation of both specific and non-specific symptoms, but relatively little is known of the perspectives of clinicians and what influences their prescribing in this context. The aim of this study was to explore the experiences and perspectives of those involved in the prescribing of corticosteroids in palliative care.
Semi-structured interviews were undertaken with 12 medical practitioners and six senior nurses from a sample of six New Zealand hospices to identify their experiences and attitudes regarding the prescribing of corticosteroids. A general inductive approach was used to thematically analyse data.
Five broad themes were identified: the role of corticosteroids in palliative care; indications for corticosteroids; influences on prescribing; use of guidelines; and perceptions of previous study data on prescribing patterns for their hospice. Interviewees regarded these agents as having an important place in in palliative care but expressed a degree of uncertainty about certain aspects of their use. They were concerned about issues such as prescribing for non-specific indications, methods of stopping, and lack of monitoring and reviewing. Guidelines were used routinely by only one of the sample hospices. Corticosteroids tended to be prescribed experientially or by habit, rather than based on evidence-based guidelines.
This study has highlighted differences in the understanding of the place of corticosteroids in palliative care by the clinicians interviewed in this study and different practices, particularly in the treatment of non-specific symptoms and in the use of guidelines. These findings suggest a need for further research and discussion about the role of corticosteroids in palliative care and the development of evidence-based guidelines to assist prescribers.
PMCID: PMC4247745  PMID: 25435807
Corticosteroids; Palliative care clinicians; Hospices; Prescribing; Qualitative study
10.  Opioid switch from low dose of oral oxycodone to transdermal fentanyl matrix patch for patients with stable thoracic malignancy-related pain 
BMC Palliative Care  2014;13:46.
The effectiveness and safety of switch from oral oxycodone to fentanyl patch is little known. Here, we investigated if early phase opioid switch from low dose of oral oxycodone to transdermal fentanyl matrix patch provided any benefits for patients with thoracic malignancy and stable cancer-related pain.
This open-label two-centered prospective study enrolled patients with thoracic malignancy suffering persistent malignancy-related pain with numeric rating scale of pain intensity ≤ 3 which had been controlled by oral oxycodone ≤ 20 mg/day. Eligible patients switched from oral oxycodone to 12.5 μg/h of transdermal fentanyl matrix patch. The dose was allowed to be titrated upwards every 3 day by 25-50%, except for the first increase from 12.5 μg/hr to 25 μg/hr,until achieving adequate pain control. The data on patients’ global assessment scores measured on a five-step scale, an 11-point numeric rating scale of pain intensity, the severity of adverse effects using a four-point categorical rating scale, and the Epworth sleepiness scale questionnaire were collected for 15 days.
Forty-nine eligible patients were analyzed. Overall patients’ satisfaction score significantly improved from day 1 (2.7 ± 0.9) to day 15 (2.3 ± 0.9) (p < 0.05), and 90% and 78% of patients remained to receive the minimum dose of fentanyl patch on day 8 and 15 from the opioid switch. There was a significant difference in sleepiness throughout the study period, though no difference was detected in pain intensity and other adverse effects.
Transdermal fentanyl matrix patch is an alternative analgesic option for a stable cancer pain in patients with thoracic malignancies.
PMCID: PMC4195703  PMID: 25313295
Transdermal fentanyl matrix patch; Oxycodone; Opioid switch; Pain; Thoracic malignancy
11.  Characteristics of a palliative care consultation service with a focus on pain in a German university hospital 
BMC Palliative Care  2014;13:45.
A minority of patients with incurable and advanced disease receive specialised palliative care. Specialised palliative care services that complement the care of difficult and complex cases ought to be integrated with services that deliver general care for most patients. A typical setting in which this integrative concept takes place is the hospital setting, where patients suffering from incurable and advanced disease are treated in many different departments.
The aim of the study is to investigate the profile and spectrum of a palliative care consultation service (PCCS) at a German university hospital with special reference to pain therapy.
We retrospectively analysed the PCCS documentation of three years.
Most patients were referred from non-surgical departments, 72% were inpatients, and 28% were outpatients. 98% of the patients suffered from cancer. Counselling in pain therapy was one of the key aspects of the consultation: For 76% of all consulted patients, modifications of the analgesic regimen were recommended, which involved opioids in 96%. Recommendations on breakthrough-pain medication were made for 70% of the patients; this was an opioid in most cases (68%). The most commonly used opioid was morphine. For 17% of the patients, additional diagnostic procedures were recommended. Besides pain management palliative care consultation implied a wide range of recommendations and services: In addition to organising home care infrastructure, palliative care services supported patients and their families in understanding the life-limiting diseases. They also coordinated physical therapy and social and legal advice.
This survey clearly shows that for a consultation service to support patients with incurable or advanced disease, a multi-disciplinary approach is necessary to meet the complex requirements of a needs-adapted palliative care in inpatient or outpatient settings. Timely integration of palliative expertise may support symptom control and may give the required advice to patients, their carers, and their families.
PMCID: PMC4177373  PMID: 25276095
12.  The DOMUS study protocol: a randomized clinical trial of accelerated transition from oncological treatment to specialized palliative care at home 
BMC Palliative Care  2014;13:44.
The focus of Specialized Palliative Care (SPC) is to improve care for patients with incurable diseases and their families, which includes the opportunity to make their own choice of place of care and ultimately place of death.
The Danish Palliative Care Trial (DOMUS) aims to investigate whether an accelerated transition process from oncological treatment to continuing SPC at home for patients with incurable cancer results in more patients reaching their preferred place of care and death. The SPC in this trial is enriched with a manualized psychological intervention.
DOMUS is a controlled randomized clinical trial with a balanced parallel-group randomization (1:1). The planned sample size is 340 in- and outpatients treated at the Department of Oncology at Copenhagen University Hospital. Patients are randomly assigned either to: a) standard care plus SPC enriched with a standardized psychological intervention for patients and caregivers at home or b) standard care alone. Inclusion criteria are incurable cancer with no or limited antineoplastic treatment options.
Programs that facilitate transition from hospital treatment to SPC at home for patients with incurable cancer can be a powerful tool to improve patients’ quality of life and support family/caregivers during the disease trajectory. The present study offers a model for achieving optimal delivery of palliative care in the patient’s preferred place of care and attempt to clarify challenges.
Trial registration Identifier: NCT01885637
PMCID: PMC4169691  PMID: 25242890
Cancer; Home care services; Randomized controlled trial; Specialized palliative care; Palliative treatment; Patient care
13.  Qualitative inquiry: a method for validating patient perceptions of palliative care while enrolled on a cancer clinical trial 
BMC Palliative Care  2014;13:43.
Palliative care is a vital component of patient-centered care. It has increasingly become central to the management and care of seriously ill patients by integrating physical, psychosocial, and spiritual supportive services. Through qualitative inquiry, this paper examines cancer patients’ perceptions of the process and outcomes of the pain and palliative care consultative services they received while enrolled in a clinical trial.
A qualitative analysis of open-ended questions was conducted from a sub-sample of patients (n = 34) with advanced cancers enrolled in a randomized controlled trial exploring the efficacy of a palliative care consult service. Two open-ended questions focused on patient perceptions of continued participation on their primary cancer clinical trials and their perceptions of interdisciplinary communication.
Three overarching themes emerged when asked whether receiving pain and palliative care services made them more likely to remain enrolled in their primary cancer clinical trial: patients’ past experiences with care, self-identified personal characteristics and reasons for participation, and the quality of the partnership. Four themes emerged related to interdisciplinary communication including: the importance of developing relationships, facilitating open communication, having quality communication, and uncertainty about communication between the cancer clinical trial and palliative care teams.
Our findings suggest the importance of qualitative inquiry methods to explore patient perceptions regarding the efficacy of palliative care services for cancer patients enrolled in a cancer clinical trial. Validation of patient perceptions through qualitative inquiry regarding their pain and palliative care needs can provide insight into areas for future implementation research.
Trial registration
NIH Office of Human Subjects Research Protection OHSRP5443 and University of Pennsylvania 813365
PMCID: PMC4178548  PMID: 25276094
Palliative care; Cancer clinical trial; Palliative care; Pain; Communication
14.  Clinical evaluation of the efficacy of methylnaltrexone in resolving constipation induced by different opioid subtypes combined with laboratory analysis of immunomodulatory and antiangiogenic effects of methylnaltrexone 
BMC Palliative Care  2014;13:42.
Opioid-induced constipation (OIC) is one of the major symptoms in palliative care with a prevalence of 30-50%. Methylnaltrexone for the treatment of OIC is significantly more effective than placebo, but only in about fifty percent of the patients regardless of dose increase. Dose increases cause increased toxicity without additional efficacy, and are therefore not recommended.
While methylnaltrexone is a μ-receptor antagonist, only a few opioids are solely μ-receptor agonists. Therefore, the response to methylnaltrexone may be determined by the receptor-profile of a specific opioid. In addition, methylnaltrexone may also affect the immune system and angiogenesis as was found in pre-clinical studies. Primary aim of this study is to determine differences in the efficacy of methylnaltrexone prescribed to resolve opioid induced constipation between three commonly used opioid subtypes: morphine sulphate, oxycodone and fentanyl. Secondary aim is to explore potential immunomodulatory and antiangiogenic effects of methylnaltrexone.
In this multi-center, prospective, parallel group trial we will evaluate the efficacy of methylnaltrexone in resolving OIC occurring as a side effect of the most common opioid subtypes: morphine, oxycodone and fentanyl. In total 195 patients with OIC despite prophylactic laxatives will receive methylnaltrexone every other day up to fourteen days. Patients will report its effect in a laxation diary. Group allocation is based on the opioid type the patient is using. At the start and end of the study period patients complete the Bowel Function Index questionnaire. A subgroup of the patients will donate blood for analysis of immunomodulatory- and anti-angiogenic effects of methylnaltrexone.
In this study we aim to determine the efficacy of methylnaltrexone per opioid subtype to reduce constipation. We expect that the outcome of this study will improve the clinical use of methylnaltraxone.
Trial registration
This trial is registered at NCT01955213 and in the Dutch trial register: NTR4272.
PMCID: PMC4145161  PMID: 25165428
Constipation; Palliative care; Opioids; Methylnaltrexone; Immunomodulation; Angiogenesis
15.  Is a good death possible in Australian critical and acute settings?: physician experiences with end-of-life care 
BMC Palliative Care  2014;13:41.
In Australia approximately 70% of all deaths are institutionalised but over 15% of deaths occur in intensive care settings where the ability to provide a “good death” is particularly inhibited. Yet, there is a growing trend for death and dying to be managed in the ICU and physicians are increasingly challenged to meet the new expectations of their specialty. This study examined the unexplored interface between specialised Australian palliative and intensive care and the factors influencing a physician’s ability to manage deaths well.
A qualitative investigation was focused on palliative and critical/acute settings. A thematic analysis was conducted on semi-structured in-depth interviews with 13 specialist physicians. Attention was given to eliciting meanings and experiences in Australian end-of-life care.
Physicians negotiated multiple influences when managing dying patients and their families in the ICU. The way they understood and experienced end-of-life care practices was affected by cultural, institutional and professional considerations, and personal values and beliefs. Interpersonal and intrapsychic aspects highlighted the emotional and psychological relationship physicians have with patients and others. Many physicians were also unaware of what their cross-disciplinary colleagues could or could not do; poor professional recognition and collaboration, and ineffective care goal transition impaired their ability to assist good deaths. Experience was subject to the efficacy of physicians in negotiating complex bedside dynamics.
Regardless of specialty, all physicians identified the problematic nature of providing expert palliation in critical and acute settings. Strategies for integrating specialised palliative and intensive care were offered with corresponding directions for future research and clinical development.
PMCID: PMC4140139  PMID: 25147481
End-of-life care; Intensive care; Palliative care; Good deaths; Qualitative research; Australia
16.  Insomnia among patients with advanced disease during admission in a Palliative Care Unit: a prospective observational study on its frequency and association with psychological, physical and environmental factors 
BMC Palliative Care  2014;13:40.
The aims of this study were: 1) to assess the frequency of insomnia among patients during admission in a Palliative Care Unit (PCU); 2) to study the association between emotional distress and insomnia, taking physical, environmental and other psychological factors into account.
Prospective observational study including patients consecutively admitted to a PCU during eight months, excluding those with severe cognitive problems or too low performance status. Insomnia was assessed by asking a single question and by using the Sleep Disturbance Scale (SDS), and emotional distress using the Hospital Anxiety and Depression Scale (HADS). Physical, environmental and other psychological factors potentially interfering with sleep quality were evaluated. Association between insomnia and the factors evaluated was studied using univariate and multivariate regression analyses.
61 patients were included (mean age 71.5 years; 95% with oncological disease); 38 (62%) answered “yes” to the insomnia single question and 29 (47%) showed moderate to severe insomnia according to the SDS. 65% showed clinically significant emotional distress and 79% had nocturnal rumination. The physical symptoms most often mentioned as interfering with sleep quality were pain (69%) and dyspnoea (36%). 77% reported at least one environmental disturbance. In the univariate analysis, answering “yes” to the insomnia single question was significantly associated with higher HADS score, anxiety, nocturnal rumination, clear knowledge of the diagnosis, higher performance status and dyspnoea; moderate to severe insomnia was significantly associated with nocturnal rumination, higher performance status, environmental disturbances and daytime sleepiness. In the multivariate regression analysis, answering “yes” to the single question was associated with dyspnoea (OR 7.2 [1.65-31.27]; p = 0.009), nocturnal rumination (OR 5.5 [1.05-28.49]; p = 0.04) and higher performance status (OR 14.3 [1.62-125.43]; p = 0.017), and moderate to severe insomnia with nocturnal rumination (OR 5.6 [1.1-29.1]; p = 0.041), and inversely associated with daytime sleepiness (OR 0.25 [0.07-0.9]; p = 0.043).
Insomnia was highly frequent. Several physical, psychological and environmental factors seemed to influence insomnia. Within the multimodal management of insomnia, the assessment of nocturnal rumination may be of particular interest, irrespective of emotional distress. Further studies with larger sample sizes could confirm this result.
PMCID: PMC4135052  PMID: 25136263
Palliative care [MeSH]; Sleep disorders [MeSH]; Insomnia; Rumination; Oncology; Symptom assessment [MeSH]; Sleep Disturbance Scale
17.  A qualitative investigation of the roles and perspectives of older patients with advanced cancer and their family caregivers in managing pain in the home 
BMC Palliative Care  2014;13:39.
Pain in advanced cancer is complex and multifaceted. In older patients comorbidities and age-related functional decline add to the difficulties in managing cancer pain. The current emphasis on care in the community, and preference by patients with life-limiting disease to receive care in the home, has meant that patients and their family caregivers have become increasingly responsible for the day-to-day management of cancer pain. An appreciation of patients’ and caregivers’ roles and perspectives managing pain is, therefore, fundamental to addressing cancer pain in this setting. Consequently, we sought to explore and describe their perspectives and roles.
A qualitative descriptive approach was used. Semi-structured interviews were conducted with a purposeful sample of patient- family caregiver dyads. Participants included 18 patients aged 65 years and over, with advanced cancer, receiving palliative care at home, and 15 family caregivers. The interview data were analysed using thematic analyses. Strategies were used to establish rigour.
Two main themes were identified. The first theme, "Communicating the pain", represented pain assessment and incorporated four subthemes in which participants described: their roles in pain assessment, the identification and expression of pain, and the communication of pain between patients and caregivers. The second theme, "Finding a solution", comprised of four subthemes that reflected participants’ roles and approaches in controlling pain; as well as their beliefs about cancer pain control, experience with side effects, and perspectives on the goals of treatment.
The findings support other studies in identifying knowledge and attitudinal barriers to pain control; while adding to the literature by highlighting practical and relational barriers faced by older patients and their family caregivers. Health care professionals can do much to address the barriers identified by: correcting misconceptions regarding cancer pain, facilitating the communication of pain within dyads, and ensuring that patients and family caregivers have the knowledge, skills, and ability to assess and implement pain treatment strategies. This support needs to be individually tailored to meet the ongoing needs of both members of the dyad so that the shared goals of pain management are accomplished.
PMCID: PMC4137110  PMID: 25140119
Cancer; Pain; Palliative care; Family caregivers; Aging
18.  What a wish to die can mean: reasons, meanings and functions of wishes to die, reported from 30 qualitative case studies of terminally ill cancer patients in palliative care 
BMC Palliative Care  2014;13:38.
Despite research efforts over recent decades to deepen our understanding of why some terminally ill patients express a wish to die (WTD), there is broad consensus that we need more detailed knowledge about the factors that might influence such a wish. The objective of this study is to explore the different possible motivations and explanations of patients who express or experience a WTD.
Thirty terminally ill cancer patients, their caregivers and relatives; from a hospice, a palliative care ward in the oncology department of a general hospital, and an ambulatory palliative care service; 116 semi-structured qualitative interviews analysed using a complementary grounded theory and interpretive phenomenological analysis approach.
Three dimensions were found to be crucial for understanding and analysing WTD statements: intentions, motivations and social interactions. This article analyses the motivations of WTD statements. Motivations can further be differentiated into (1) reasons, (2) meanings and (3) functions. Reasons are the factors that patients understand as causing them to have or accounting for having a WTD. These reasons can be ordered along the bio-psycho-socio-spiritual model. Meanings describe the broader explanatory frameworks, which explain what this wish means to a patient. Meanings are larger narratives that reflect personal values and moral understandings and cannot be reduced to reasons. Functions describe the effects of the WTD on patients themselves or on others, conscious or unconscious, that might be part of the motivation for a WTD. Nine typical ‘meanings’ were identified in the study, including “to let death put an end to severe suffering”, “to move on to another reality”, and – more frequently– “to spare others from the burden of oneself”.
The distinction between reasons, meanings and functions allows for a more detailed understanding of the motivation for the WTD statements of cancer patients in palliative care situations. Better understanding is crucial to support patients and their relatives in end-of-life care and decision making. More research is required to investigate the types of motivations for WTD statements, also among non-cancer patients.
PMCID: PMC4144684  PMID: 25161387
Wish to die; Wish to hasten death; Desire to die; Meaning; Aetiology; Ethics; Palliative care; Cancer; Oncology
19.  What works in ‘real life’ to facilitate home deaths and fewer hospital admissions for those at end of life?: results from a realist evaluation of new palliative care services in two English counties 
BMC Palliative Care  2014;13:37.
We evaluated end of life care services in two English counties including: coordination centres, telephone advice line, ‘Discharge in Reach’ nurses, a specialist community personal care team and community nurse educators. Elsewhere, we published findings detailing high family carer satisfaction and fewer hospital admissions, Accident and Emergency attendances and hospital deaths for service users compared to controls. The aim of this paper is to discuss what contributed to those outcomes.
Using realist evaluation, data collection included documentation (e.g. referral databases), 15 observations of services and interviews with 43 family carers and 105 professionals. Data were analysed using framework analysis, applying realist evaluation concepts. Findings were discussed at successive team meetings and further data was collected until team consensus was reached.
Services ‘worked’ primarily for those with cancer with ‘fast track’ funding who were close to death. Factors contributing to success included services staffed with experienced palliative care professionals with dedicated (and sufficient) time for difficult conversations with family carers, patients and/or clinical colleagues about death and the practicalities of caring for the dying. Using their formal and informal knowledge of the local healthcare system, they accessed community resources to support homecare and delivered excellent services. This engendered confidence and reassurance for staff, family carers and patients, possibly contributing to less hospital admissions and A&E attendances and more home deaths.
With demand for 24-hour end of life care growing and care provision fragmented across health and social care boundaries, services like these that cut across organisational sectors may become more important. They offer an overview to help navigate those desiring a home death through the system.
PMCID: PMC4114793  PMID: 25075202
20.  Feasibility of assessing quality of care at the end of life in two cluster trials using an after-death approach with multiple assessments 
BMC Palliative Care  2014;13:36.
In 2009 two randomised cluster trials took place to assess the introduction of the Italian Version of the Liverpool Care Pathway in hospitals and hospices. Before and after data were gathered. The primary aim of this study is to evaluate the feasibility of using a combination of assessment methods aimed at different proxy respondents to create a means of measuring quality of care at the end of life. We also aim to explore whether there are differences in response to this approach between the hospice and hospital inpatient settings.
A retrospective design was used. Eligible deaths were traced through death registries, and proxies were used to give information. Four procedures of assessment were used to measure different dimensions. Feasibility was assessed through compliance and adherence to the study instruments, and measured against standards derived from previous after-death studies. The proxy caregiver’s rating of the study tools was also measured, to gauge feasibility and effectiveness. All consecutive cancer deaths that occurred in the study period were eligible. In both trials, deaths were excluded if the patient was a relative of hospital/hospice staff. 145 patients were recruited from the Hospital setting, and 127 from Hospice.
A high proportion of non-professional caregivers were interviewed – in both hospital (76.6%) and hospice (74.8%). There was no significant difference in the median number of days in each setting. 89.0% of hospital patients’ GPs and 85.0% of hospice patients’ GPs were interviewed. Care procedures were recorded in all hospice cases, and were missing in only 1 hospital case.52.7% of Hospital patients’ relatives and 64.12% Hospice relatives were assessed to have been caused a low level of distress through the study.
The data shows high levels of compliance and adherence to the study instruments. This suggests that this approach to assessing quality of care is feasible, and this coupled with low levels of distress caused by the study instruments suggest effectiveness. There were no substantial differences between the hospice and hospital settings.
PMCID: PMC4113121  PMID: 25071416
Retrospective study; End of life care; Methodological study; Feasibility study; Quality of health care; Cancer
21.  Predictors of emergency room visits or acute hospital admissions prior to death among hospice palliative care clients in Ontario: a retrospective cohort study 
BMC Palliative Care  2014;13:35.
Hospice palliative care (HPC) is a philosophy of care that aims to relieve suffering and improve the quality of life for clients with life-threatening illnesses or end of life issues. The goals of HPC are not only to ameliorate clients’ symptoms but also to reduce unneeded or unwanted medical interventions such as emergency room visits or hospitalizations (ERVH). Hospitals are considered a setting ill-prepared for end of life issues; therefore, use of such acute care services has to be considered an indicator of poor quality end of life care. This study examines predictors of ERVH prior to death among HPC home care clients.
A retrospective cohort study of a sample of 764 HPC home care clients who received services from a community care access centre (CCAC) in southern Ontario, Canada. All clients were assessed using the Resident Assessment Instrument for Palliative Care (interRAI PC) as part of normal clinical practice between April 2008 and July 2010. The Andersen-Newman framework for health service utilization was used as a conceptual model for the basis of this study. Logistic regression and Cox regression analyses were carried out to identify predictors of ERVH.
Half of the HPC clients had at least one or more ERVH (n = 399, 52.2%). Wish to die at home (OR = 0.54) and advanced care directives (OR = 0.39) were protective against ERVH. Unstable health (OR = 0.70) was also associated with reduced probability, while infections such as prior urinary tract infections (OR = 2.54) increased the likelihood of ERVH. Clients with increased use of formal services had reduced probability of ERVH (OR = 0.55).
Findings of this study suggest that predisposing characteristics are nearly as important as need variables in determining ERVH among HPC clients, which challenges the assumption that need variables are the most important determinants of ERVH. Ongoing assessment of HPC clients is essential in reducing ERVH, as reassessments at specified intervals will allow care and service plans to be adjusted with clients’ changing health needs and end of life preferences.
PMCID: PMC4106206  PMID: 25053920
Hospice palliative care; Emergency room visits; Acute hospital admissions; InterRAI PC
22.  Towards a standardised approach for evaluating guidelines and guidance documents on palliative sedation: study protocol 
BMC Palliative Care  2014;13:34.
Sedation in palliative care has received growing attention in recent years; and so have guidelines, position statements, and related literature that provide recommendations for its practice. Yet little is known collectively about the content, scope and methodological quality of these materials.
According to research, there are large variations in palliative sedation practice, depending on the definition and methodology used. However, a standardised approach to comparing and contrasting related documents, across countries, associations and governmental bodies is lacking. This paper reports on a protocol designed to enable thorough and systematic comparison of guidelines and guidance documents on palliative sedation.
Methods and design
A multidisciplinary and international group of palliative care researchers, identified themes and clinical issues on palliative sedation based on expert consultations and evidence drawn from the EAPC (European Association of Palliative Care) framework for palliative sedation and AGREE II (Appraisal Guideline Research and Evaluation) instrument for guideline assessment. The most relevant themes were selected and built into a comprehensive checklist. This was tested on people working closely with practitioners and patients, for user-friendliness and comprehensibility, and modified where necessary. Next, a systematic search was conducted for guidelines in English, Dutch, Flemish, or Italian. The search was performed in multiple databases (PubMed, CancerLit, CNAHL, Cochrane Library, NHS Evidence and Google Scholar), and via other Internet resources. Hereafter, the final version of the checklist will be used to extract data from selected literature, and the same will be compiled, entered into SPSS, cleaned and analysed systematically for publication.
We have together developed a comprehensive checklist in a scientifically rigorous manner to allow standardised and systematic comparison. The protocol is applicable to all guidelines on palliative sedation, and the approach will contribute to rigorous and systematic comparison of international guidelines on any challenging topic such as this. Results from the study will provide valuable insights into common core elements and differences between the selected guidelines, and the extent to which recommendations are derived from, or match those in the EAPC framework. The outcomes of the study will be disseminated via peer-reviewed journals and directly to appropriate audiences.
PMCID: PMC4099031  PMID: 25028571
Palliative sedation; Practice guidelines; Content analysis; Comparative research; Study protocol
24.  Creating an advance-care-planning decision aid for high-risk surgery: a qualitative study 
BMC Palliative Care  2014;13:32.
High-risk surgery patients may lose decision-making capacity as a result of surgical complications. Advance care planning prior to surgery may be beneficial, but remains controversial and is hindered by a lack of appropriate decision aids. This study sought to examine stakeholders’ views on the appropriateness of using decision aids, in general, to support advance care planning among high-risk surgery populations and the design of such a decision aid.
Key informants were recruited through purposive and snowball sampling. Semi-structured interviews were conducted by phone until data collected reached theoretical saturation. Key informants were asked to discuss their thoughts about advance care planning and interventions to support advance care planning, particularly for this population. Researchers took de-identified notes that were analyzed for emerging concordant, discordant, and recurrent themes using interpretative phenomenological analysis.
Key informants described the importance of initiating advance care planning preoperatively, despite potential challenges present in surgical settings. In general, decision aids were viewed as an appropriate approach to support advance care planning for this population. A recipe emerged from the data that outlines tools, ingredients, and tips for success that are needed to design an advance care planning decision aid for high-risk surgical settings.
Stakeholders supported incorporating advance care planning in high-risk surgical settings and endorsed the appropriateness of using decision aids to do so. Findings will inform the next stages of developing the first advance care planning decision aid for high-risk surgery patients.
PMCID: PMC4110535  PMID: 25067908
Advance care planning; Decision aids; Palliative care; Decision making; Preoperative care
25.  Social capital in a lower socioeconomic palliative care population: a qualitative investigation of individual, community and civic networks and relations 
BMC Palliative Care  2014;13:30.
Lower socioeconomic populations live and die in contexts that render them vulnerable to poorer health and wellbeing. Contexts of care at the end of life are overwhelmingly determined by the capacity and nature of formal and informal networks and relations to support care. To date, studies exploring the nature of networks and relations of support in lower socioeconomic populations at the end of life are absent. This qualitative study sought to identify the nature of individual, community and civic networks and relations that defined the contexts of care for this group.
Semi-structured qualitative interviews were conducted with 16 patients and 6 informal carers who identified that they had social and economic needs and were from a lower socioeconomic area. A social capital questionnaire identifying individual, community and civic networks and relations formed the interview guide. Interviews were audio-taped, transcribed and analysed using framework analysis.
Participants identified that individual and community networks and relations of support were mainly inadequate to meet care needs. Specifically, data revealed: (1) individual (informal caregivers) networks and relations were small and fragile due to the nature of conflict and crisis; (2) community trust and engagement was limited and shifted by illness and caregiving; (3) and formal care services were inconsistent and provided limited practical support. Some transitions in community relations for support were noted. Levels of civic and government engagement and support were overall positive and enabled access to welfare resources.
Networks and relations of support are essential for ensuring quality end of life care is achieved. Lower socioeconomic groups are at a distinct disadvantage where these networks and relations are limited, as they lack the resources necessary to augment these gaps. Understanding of the nature of assets and limitations, in networks and relations of support, is necessary to inform interventions to improve end of life care for lower socioeconomic populations.
PMCID: PMC4067081  PMID: 24959101
Palliative care; End of life care; Lower socioeconomic; Social capital; Networks and relations

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