Objective: The objective of this study was to estimate palliative care needs and to describe the cohort of children with life-limiting illnesses (LLI) dying in hospitals.
Design: This study was a retrospective cohort study. The national hospital admissions database was reviewed and children who had died who had life-limiting illnesses were identified.
Setting: This study was conducted at Ministry of Health hospitals, Malaysia.
Patients: Children aged 18 years and below who had died between January 1, 2012 and December 31, 2014.
Main Outcome Measures: Life-limiting diagnoses based on Hain et al.'s directory of LLI or the ACT/RCPCH categories of life-limiting disease trajectories.
Results: There were 8907 deaths and 3958 (44.4%) were that of children with LLI. The majority, 2531 (63.9%) of children with LLI were neonates, and the most common diagnosis was extreme prematurity <28 weeks with 676 children (26.7%). For the nonneonatal age group, the median age at admission was 42 months (1-216 months). A majority, 456 (32.0%) had diagnoses from the ICD-10 chapter "Neoplasms" followed by 360 (25.3%) who had a diagnoses from "Congenital malformations, deformations, and chromosomal abnormalities" and 139 (9.7%) with diagnoses from "Disease of the nervous system." While a majority of the terminal admissions were to the general ward, there were children from the nonneonatal age group, 202 (14.2%) who died in nonpediatric wards.
Conclusion: Understanding the characteristics of children with LLI who die in hospitals could contribute toward a more efficient pediatric palliative care (PPC) service development. PPC service should include perinatal and neonatal palliative care. Palliative care education needs to extend to nonpediatric healthcare providers who also have to manage children with LLI.
Being diagnosed with and having a life-limiting illness is a stressful experience which is compounded when the patient has dependent children. An important aspect of the patient's psychosocial care should include recognition that their children are also likely to experience severe stress because of the illness. However, children's needs are often overlooked during the illness. These needs include information about the illness. Health care professionals have a significant role in supporting patients to communicate with their children. This study aims to increase our understanding of children's experiences when a parent has a life-limiting illness by exploring bereaved children's experiences of the support they received when their parent had a life-limiting illness, and professionals' perspectives of the support offered to children. 7 children (aged between 9 and 24), and 16 health care professionals were interviewed about communication during parental illness. Children report needing open, clear and age appropriate conversations with parents and health care professionals to help them begin to obtain some meaning from the situation. The importance of communication is discussed, with particular reference to the role health care professionals have in supporting these conversations.
PURPOSE: To determine motives and attitudes towards life-sustaining treatments (LSTs) by clinical and preclinical medical students.
METHODS: This was a scenario-based questionnaire that presented patients with a limited life expectancy. The survey was distributed among 455 medical students in preclinical and clinical years. Students were asked to rate their willingness to perform LSTs and rank the motives for doing so. The effect of medical education was then investigated after adjustment for age, gender, religion, religiosity, country of origin, and marital status.
RESULTS: Preclinical students had a significantly higher willingness to perform LSTs in all cases. This was observed in all treatments offered in cases of a metastatic oncologic patient and an otherwise healthy man after a traumatic brain injury (TBI). In the case of an elderly woman on long-term care, preclinical students had higher willingness to supply vasopressors but not perform an intubation, feed with a nasogastric tube, or treat with a continuous positive air-pressure ventilator. Both preclinical and clinical students had high willingness to perform resuscitation on a twelve-year-old boy with a TBI. Differences in motivation factors were also seen.
DISCUSSION: Preclinical students had a greater willingness to treat compared to clinical students in all cases and with most medical treatments offered. This is attributed mainly to changes along the medical curriculum. Changes in reasons for supplying LSTs were also documented.
Introduction: Emergency department (ED)-initiated palliative care has been shown to improve patient-centred outcomes in older adults with serious, life-limiting illnesses. However, the optimal modality for providing such interventions is unknown. This study aims to compare nurse-led telephonic case management to specialty outpatient palliative care for older adults with serious, life-limiting illness on: (1) quality of life in patients; (2) healthcare utilisation; (3) loneliness and symptom burden and (4) caregiver strain, caregiver quality of life and bereavement.
Methods and analysis: This is a protocol for a pragmatic, multicentre, parallel, two-arm randomised controlled trial in ED patients comparing two established models of palliative care: nurse-led telephonic case management and specialty, outpatient palliative care. We will enrol 1350 patients aged 50+ years and 675 of their caregivers across nine EDs. Eligible patients: (1) have advanced cancer (metastatic solid tumour) or end-stage organ failure (New York Heart Association class III or IV heart failure, end-stage renal disease with glomerular filtration rate <15 mL/min/m2, or global initiative for chronic obstructive lung disease stage III, IV or oxygen-dependent chronic obstructive pulmonary disease); (2) speak English; (3) are scheduled for ED discharge or observation status; (4) reside locally; (5) have a working telephone and (6) are insured. Patients will be excluded if they: (1) have dementia; (2) have received hospice care or two or more palliative care visits in the last 6 months or (3) reside in a long-term care facility. We will use patient-level block randomisation, stratified by ED site and disease. Effectiveness will be compared by measuring the impact of each intervention on the specified outcomes. The primary outcome will measure change in patient quality of life.
Ethics and dissemination Institutional Review Board approval was obtained at all study sites. Trial results will be submitted for publication in a peer-reviewed journal.
OBJECTIVE: Older people approaching the end of life are at high risk for adverse drug reactions. Approaching end of life should change the therapeutic aims, triggering a reduction in the number of drugs. The main aim of this study was to describe the preventive and symptomatic drug treatments prescribed to patients discharged from internal medicine and geriatric wards, with limited life expectancy. The secondary aim was to describe the potentially severe DDIs.
MATERIALS AND METHODS: We analyzed Registry of Polytherapies Societa Italiana di Medicina Interna (REPOSI), a network of internal medicine and geriatric wards, to describe the drug therapy of patients discharged with limited life expectancy.
RESULTS: The study sample comprised 55 patients discharged with limited life expectancy. Patients with at least one preventive medication that could be considered for de-prescription at end-of-life were significantly fewer from admission to discharge (30; 54.5% and 21; 38.2%, p = 0.02). ACE inhibitors, angiotensin II receptor blockers, calcium channel blockers, lipid-lowering drugs and clonidine were the most frequent potentially avoidable medications prescribed at discharge, followed by xanthine oxidase inhibitors and drugs to prevent fractures. Thirty-seven (67.3%) patients were also exposed to at least one potentially severe drug-drug interaction at discharge.
CONCLUSION: Hospital discharge is associated with small reductions in the use of commonly prescribed preventive medications in patients discharged with limited life expectancy. Cardiovascular drugs are the most frequent potentially avoidable preventive medications. A consensus framework, or shared criteria for potentially inappropriate medication in elderly patients with limited life expectancy could be useful to further improve drug prescription.
BACKGROUND: A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%-85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However, structured Perinatal Palliative Care programs are missing in many European countries. In Germany, parents have the right to free psychosocial support from pregnancy counseling services after the prenatal diagnosis of a life-limiting disease.
AIM: We aimed to investigate whether German professional pregnancy counselors perceive the need for structured Perinatal Palliative Care and if so, how it should be conceived.
DESIGN: This is a qualitative interview study with purposeful sampling. The interviews were analyzed with the coding method of Saldaña.
SETTING/PARTICIPANTS: A total of 10 professionals from three different pregnancy counseling services participated in the study.
RESULTS: The main topics raised by the professionals were as follows: (1) counseling and parental support during the decision-making process; (2) fragmented or missing support infrastructure for parents; and (3) challenges, hesitations, and barriers, particularly from the different stakeholders, regarding a Perinatal Palliative Care framework. They highlighted the importance of the integration of Perinatal Palliative Care in existing structures, a multi-professional approach, continuous coordination of care and education for all healthcare providers involved.
CONCLUSION: A structured Perinatal Palliative Care program is considered as necessary by the pregnancy counselors. Future research should focus on (1) needs reported by concerned parents; (2) attitude and role of all healthcare providers involved; (3) strategies to include stakeholders in the development of Perinatal Palliative Care networks; and (4) outcome parameters for evaluation of Perinatal Palliative Care frameworks.
BACKGROUND: Polypharmacy may be particularly burdensome near the end of life, as patients "accumulate" medications to treat and prevent multiple diseases.
OBJECTIVE: To evaluate associations between polypharmacy, symptom burden, and quality of life (QOL) in patients with advanced, life-limiting illness (clinician-estimated, 1 month-1 year).
DESIGN: Secondary analysis of baseline data from a trial of statin discontinuation.
PARTICIPANTS: Adults with advanced, life-limiting illness.
MAIN MEASURES: Polypharmacy was assessed by summing the number of non-statin medications taken regularly or as needed. Symptom burden was assessed using the Edmonton Symptom Assessment Scale (range 0-90; higher scores indicating greater symptom burden) and QOL was assessed using the McGill QOL Questionnaire (range 0-10; higher scores indicating better QOL). Linear regression models assessed associations between polypharmacy, symptom burden, and QOL.
KEY RESULTS: Among 372 participants, 47% were age 75 or older and 35% were enrolled in hospice. The mean symptom score was 27.0 (standard deviation (SD) 16.1) and the mean QOL score was 7.0 (SD 1.3). The average number of non-statin medications was 11.6 (SD 5.0); one-third of participants took = 14 medications. In adjusted models, higher polypharmacy was associated with higher symptom burden (coefficient 0.81; p < .001) and lower QOL (coefficient - .06; p = .001). Adjusting for symptom burden weakened the association between polypharmacy and QOL (coefficient - .03; p = .045) without a significant interaction, suggesting that worse quality of life associated with polypharmacy may be related to medication-associated symptoms.
CONCLUSIONS: Among adults with advanced illness, taking more medications is associated with higher symptom burden and lower QOL. Attention to medication-related symptoms and shared decision-making regarding deprescribing are warranted in this setting.
NIH TRIAL REGISTRY NUMBER: ClinicalTrials.gov Identifier for Parent Study - NCT01415934.
AIM: The purpose of this study was to compare how planning has developed over the 5 years across a range of children's health care services in a single U.K. city.
BACKGROUND: Advanced planning for end of life care (EOLC) is an essential component of care for children with life-limiting and life-threatening (LLLT) conditions. We report the findings of a follow-up study (R2) completed 5 years after the initial review (R1). Documented advanced care planning (ACP) was measured against published children's palliative care standards.
METHOD: We used a manual retrospective review of health care records, using focused data collection. Inclusion criteria were children who died before the age of 18 years, as a consequence of an LLLT condition, over an 18-month period and had lived locally to a regional children's hospital.
RESULTS: The first review (R1) included 48 patients with 114 health care records: median age at death 0 years (range 0 to 18 years). The follow-up review (R2) included 47 patients, with 80 health care records: median age at death 2 years (range 0 to 17 years). The proportion of records containing evidence of a prognostic discussion had risen from 73% (R1) to 91% (R2), p < 0.005. The proportion of health care records with ACP was consistent between R1 and R2 (75% and 72%, respectively). An ACP tool was found to be in regular use in R2 compared with no examples in R1. The acute hospital trust plans were more detailed in R2 than R1. The proportion of cases where preferred location of death matched actual location was stable, around half.
CONCLUSIONS: EOLC conversations increased over the 5 years studied. In the acute hospital trust, there is evidence of a better quality ACP although quantity is stable: enabled by the implementation of an ACP tool and education programme. Challenges remain in engaging children and young people in advanced planning.
Aim of the study: The McGill Quality of Life Questionnaire has been widely used for people with life-threatening illnesses since 1996. In 2016 Cohen et al. revised the McGill Quality of Life Questionnaire and improved its psychometric properties and length. The aim of the present study was to adapt the McGill Quality of Life Questionnaire - Revised (MQOL-R) into Polish. The study assessed the factorial structure, reliability, and validity of the Polish adaptation of the MQOL-R.
Material and methods: The study had a non-randomised, cross-sectional design. The Polish translation of the MQOL-R was administered to 140 people with life-threatening illnesses. Patients were recruited from acute and palliative care units. Data were analysed using confirmatory factor analysis, and correlational and multiple regression analyses.
Results: The results provide support for the measurement structure of the Polish adaptation of the MQOL-R. Both the overall scale and four subscales have satisfactory internal consistency and the construct and concurrent validity.
Conclusions: The Polish MQOL-R is psychometrically sound and may serve as a valuable asset in research on quality of life of people with life-threatening illnesses.
BACKGROUND: Noncancer patients with life-limiting diseases often receive more intensive level of care in their final days of life, with more cardiopulmonary resuscitation performed and less do-not-resuscitate (DNR) orders in place. Nevertheless, death is still often a taboo across Chinese culture, and ethnic disparities could negatively affect DNR directives completion rates.
OBJECTIVES: We aim to explore whether Chinese noncancer patients are willing to sign their own DNR directives in a palliative specialist clinic, under a multidisciplinary team approach.
DESIGN: Retrospective chart review of all noncancer patients with life-limiting diseases referred to palliative specialist clinic at a tertiary hospital in Hong Kong over a 4-year period.
RESULTS: Over the study period, a total of 566 noncancer patients were seen, 119 of them completed their own DNR directives. Patients had a mean age of 74.9. Top 3 diagnoses were chronic renal failure (37%), congestive heart failure (16%), and motor neuron disease (11%). Forty-two percent of patients signed their DNR directives at first clinic attendance. Most Chinese patients (76.5%) invited family caregivers at DNR decision-making, especially for female gender (84.4% vs 69.1%; P = .047) and older (age >75) age group (86.2% vs 66.7%; P = .012). Of the 40 deceased patients, median time from signed directives to death was 5 months. Vast majority (95%) had their DNR directives being honored.
CONCLUSION: Health-care workers should be sensitive toward the cultural influence during advance care planning. Role of family for ethnic Chinese remains crucial and professionals should respect this family oriented decision-making.
Advancing technology in reproductive medicine has led to more frequent perinatal diagnoses of fatal or life-limiting anomaly. For those parents who choose to continue pregnancies while facing such a diagnosis, compassionate and communal perinatal palliative care provides beneficial physical and psycho-socio-emotional support for these families, so that they may preserve and acknowledge the relationship with their child, no matter how brief his/her life.
Background: Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patientsâ€™ experiences with advance care planning might provide clues to optimise its value to patients and improve implementation.
Aim: To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness.
Design: A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11.
Data sources: The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016.
Results: Of the 3555 articles found, 20 were included. We identified three themes in patientsâ€™ experiences with advance care planning. â€˜Ambivalenceâ€™ refers to patients simultaneously experiencing benefits from advance care planning as well as unpleasant feelings. â€˜Readinessâ€™ for advance care planning is a necessary prerequisite for taking up its benefits but can also be promoted by the process of advance care planning itself. â€˜Opennessâ€™ refers to patientsâ€™ need to feel comfortable in being open about their preferences for future care towards relevant others.
Conclusion: Although participation in advance care planning can be accompanied by unpleasant feelings, many patients reported benefits of advance care planning as well. This suggests a need for advance care planning to be personalised in a form which is both feasible and relevant at moments suitable for the individual patient.
Background: Patient empowerment, defined as â€˜a process through which people gain greater control over decisions and actions affecting their healthâ€™ (World Health Organization) is a key theme within global health and social care strategies. The benefits of incorporating empowerment strategies in care are well documented, but little is known about their application or impact for patients with advanced, life-limiting illness(s).
Aim: To identify and synthesise the international evidence on patient empowerment for adults with advanced, life-limiting illness(s).
Design: Systematic review (PROSPERO no. 46113) with critical interpretive synthesis methodology.
Data sources: Five databases (MEDLINE, Embase, CINHAL, PsycINFO and Cochrane) were searched from inception to March 2018. Grey literature and reference list/citation searches of included papers were undertaken. Inclusion criteria: empirical research involving patients with advanced life-limiting illness including descriptions of, or references to, patient empowerment within the study results.
Results: In all, 13 papers met inclusion criteria. Two qualitative studies explored patient empowerment as a study objective. Six papers evaluated interventions, referencing patient empowerment as an incidental outcome. The following themes were identified from the interpretive synthesis: self-identity, personalised knowledge in theory and practice, negotiating personal and healthcare relationships, acknowledgement of terminal illness, and navigating continued losses.
Conclusion: There are features of empowerment, for patients with advanced life-limiting illness distinct to those of other patient groups. Greater efforts should be made to progress the empowerment of patients nearing the end of their lives. We propose that the identified themes may provide a useful starting point to guide the assessment of existing or planned services and inform future research.
Despite an aging population and an increase in the prevalence of chronic severe illness, many patients will not have end-of-life care discussions with their outpatient physicians. This very likely contributes to considerable hospital utilization toward the end of life, without any clear benefit. At our medical center, we noticed a very high rate of floor-to-intensive care unit (ICU) transfers for patients with life-limiting illness and poor prognosis. We initiated a quality assessment and improvement project aimed at increasing goals-of-care conversations for high-risk patients early in their hospital stays. Patients were identified using a risk assessment score combined with presence of life-limiting illness and alerting the inpatient attending physician to the patient's severity of illness. Inpatient attending physicians were encouraged to expeditiously initiate and document goals-of-care discussions with their patients and families or to consult palliative care. Patient data were extracted retrospectively from high-risk patients prior to and during the intervention period. Analysis showed a significant increase in overall goals-of-care discussions and a significant reduction in floor-to-ICU transfers during initial admission. There was no change in mortality at 1 year, but there was a trend toward more in-home deaths for those patients who died within the year. Early inpatient goals-of-care conversations may reduce ICU utilization at index hospitalization and may reduce overall health-care utilization near the end of life.
Hospital readmission rate is a ubiquitous measure of efficiency and quality. Individuals with life-limiting illnesses account heavily for admissions but evaluation is complicated by high-mortality rates. We report a retrospective cohort study examining the association between palliative care (PC) and readmissions while controlling for postdischarge mortality with a competing risks approach. Eligible participants were adult inpatients admitted to an academic, safety-net medical center (2009-2015) with at least one diagnosis of cancer, heart failure, chronic obstructive pulmonary disease, liver failure, kidney failure, AIDS/HIV, and selected neurodegenerative conditions. PC was associated with reduced 30-, 60-, and 90-day readmissions (subhazard ratios = 0.57, 0.53, and 0.52, respectively [all p < .001]). Hospital PC is associated with a reduction in readmissions, and this is not explained by higher mortality among PC patients. Performance measures only counting those alive at a given end point may underestimate systematically the effects of treatments with a high-mortality rate.
Background: A life review is a promising intervention to enhance spiritual well-being in older people. Conventional life review interventions are lengthy and often led by psychologists.
Objectives: This is the first randomised controlled trial study to examine the effectiveness and applicability of a nurse-led short term life-review intervention in people with life limiting diseases, the purpose being to enhance their spiritual well-being and lower their anxiety and depression.
Design: A sequential mixed method approach, randomised controlled trial and qualitative evaluation, was adopted. The intervention group received the short version life review, and the control group attention placebo. Participants were randomly assigned to either intervention or control groups by computerised randomisation. Both participants and outcome assessors were blinded to the group assignment.
Settings: The study was conducted in three publicly funded regional hospitals in Hong Kong.
Participants: The target population were people suffering from life-limiting diseases, and receiving hospitalised, day hospice or outreach home care from the palliative care team.
Methods: Two sets of questionnaires were used: the spiritual sub-scale of the McGill Quality of Life Questionnaire, Hong Kong version and the Hospital Anxiety and Depression Scale, Chinese version. The intervention process was assessed by means of observation log sheets and semi-structured interviews of 12 participants.
Results: A total of 109 participants were recruited (54 in the intervention group, 55 in the control group). The intervention group showed significantly more improvement in spiritual well-being than the control group, with a Cohenâ€™s d-effect size of 0.65. Although there were improvements in both anxiety and depression levels in the intervention group, statistical significance in between-group comparisons was not reached. The process evaluation found that most participants were highly involved (92.6%), interested (77.8 %) and participated in the intervention (79.6%). The participants described the intervention process as â€˜comfortableâ€™, â€˜relaxingâ€™ and â€˜interestingâ€™, and felt enlightened, with raised self-awareness, after it.
Conclusion: The nurse-led short term life-review intervention demonstrated significant improvement effects in spiritual well-being. Participant feedback on nursesâ€™ performance was positive, finding the intervention acceptable and useful. The setting of the intervention has now been extended from bedside to home. It is recommended to incorporate life review into palliative nursing specialty training, empowering more nurses to deliver the intervention in their daily practice.
OBJECTIVE: Compassion fatigue, burnout, and vicarious traumatization are prominent topics in the current literature on the impact of the rewarding but challenging work of healthcare professionals who care for patients with life-limiting illnesses. The positive effects of caregiving constitute a newly emerging outcome that has been relatively unexplored in the pediatric literature, and yet they may play an important role in contributing to the satisfaction and well-being of the healthcare professionals who care for children who have a life-limiting illness.
METHOD: This paper reports the results of a secondary analysis of qualitative interview transcripts that explored the experiences of hospital-based pediatric healthcare providers caring for children with varied life-limiting illnesses. In-depth qualitative interviews were conducted with 25 healthcare professionals (9 social workers, 8 nurses, and 8 physicians). The majority of participants were women (80%), with an age range between 20 and 60 years, and most (84%) had the experience of caring for more than 15 dying children. Thematic analysis was conducted using interpretive description and constant comparison.
RESULTS: Every healthcare professional interviewed experienced personal growth as a result of their providing care for dying children. Three dimensions of personal growth were most consistently reported: (1) new or altered life perspectives, (2) enhanced personal resources, and (3) benevolence.
SIGNIFICANCE OF RESULTS: A deeper understanding of the phenomenon of personal growth could help healthcare organizations to implement innovative approaches that would counterbalance compassion fatigue, and thereby enhance both healthcare provider well-being and child and family outcomes.
CONTEXT: Deaths among incarcerated individuals have steadily increased in the United States, exceeding 5,000 in 2014. Nearly every state has a policy to allow patients with serious life-limiting illness to apply for release from prison or jail to die in the community ("early medical release"). Although studies show these policies are rarely used, patient-level barriers to their use are unknown.
OBJECTIVES: To assess incarcerated patients' knowledge of early medical release policies and to identify patient-level barriers to accessing these policies.
METHODS: A cross-sectional survey of 46 male patients in 2 state prisons and 1 large urban jail who had visited a primary care provider at least three times within three months.
RESULTS: Participants' average age was 64 and 89% had more than one chronic illness. Fewer than half (43%) demonstrated the knowledge needed to apply for early medical release and 22% demonstrated no relevant knowledge. Participants with sufficient knowledge were significantly more likely to endorse anxiety (35% vs 0%, P .003) and loneliness (65% vs. 30%, P .017).
CONCLUSION: Many medically complex incarcerated patients in this study did not demonstrate sufficient knowledge to apply for early medical release suggesting that patient education may help expand access to these policies. Moreover, seriously ill patients with knowledge of early medical release may benefit from enhanced psychosocial support given their disproportionate burdens of anxiety and loneliness. Our findings highlight the pressing need for larger studies to assess whether improved patient education and support can expand access to early medical release.
As the population ages, the corresponding rise in people living with life-limiting illnesses will lead to a greater need for clinician experts in palliative medicine. There are not enough physicians available to care for the growing number of patients, however. We believe that nurse practitioners are well positioned to meet this demand. In this paper, we will use the concept of disruptive innovations to provide support for our belief that nurse practitioners can, and should, take a larger role in palliative medicine. First, we will describe how 2 general types of business models-solution shops and value-adding processes-can be applied to health care in general and palliative medicine specifically. Second, we will describe the concept of disruptive innovations. Finally, we will use these business models to explain how nurse practitioners are particularly well suited to disrupt the current business model of palliative medicine, thereby allowing more patients with life-limiting illness to receive the high-quality care they need.
À l'âge de treize mois, Gaspard est diagnostiqué de la maladie de Sandhoff, maladie neuro-dégénérative rare, incurable.
Dans un témoignage aussi émouvant que salutaire, écrit à quatre mains, ils racontent leur cheminement et la façon dont la maladie a radicalement changé leur regard sur la vie.