Purpose: Balancing medications that are needed and beneficial and avoiding medications that may be harmful is important to prevent drug-related problems, and improve quality of life. The aim of this study is to describe medication use, the prevalence of deprescribing of medications suitable for deprescribing, and the prevalence of new initiation of potentially inappropriate medications (PIMs) in nursing home (NH) residents with life-limiting disease in Flanders.
Methods: NH residents aged = 65, suffering from end stage organ failure, advanced cancer, and/or dementia (n = 296), were included in this cross-sectional study with retrospective analyses of medication use at the time of data collection (t2) and 3 to 6 months before (t1). The appraisal of appropriateness of medications was done using a list of medications documented as suitable for deprescribing, and STOPPFrail criteria.
Results: Residents’ (mean age 86 years, 74% female) mean number of chronic medications increased from 7.4 (t1) to 7.9 (t2). In 31% of those using medications suitable for deprescribing, at least one medication was actually deprescribed. In 30% at least one PIM from the group of selected PIMs was newly initiated. In the subgroup (n = 76) for whom deprescribing was observed, deprescribing was associated with less new initiations of PIMs (r = - 0.234, p = 0.042).
Conclusion: Medication use remained high at the end of life for NH residents with life-limiting disease, and deprescribing was limited. However, in the subgroup of 76 residents for whom deprescribing was observed, less new PIMs were initiated.
Introduction: The aim of our study was to investigate challenges faced by emergency physicians (EPs) who provide prehospital emergency care to patients with advanced incurable diseases and family caregivers in their familiar home environment.
Methods: Qualitative study using semistructured interviews with open-ended questions to collect data from 24 EPs. Data were analyzed using qualitative content analysis.
Results: We identified nine categories of challenges: structural conditions of prehospital emergency care, medical documentation and orders, finding optimal patient-centered therapy, uncertainty about legal consequences, challenges at the individual (EP) level, challenges at the emergency team level, family caregiver's emotions, coping and understanding of patient's illness, patient's wishes, coping and understanding of patient's illness, and social, cultural, and religious background of patients and families. EPs strengthened that the integrations of specialized prehospital palliative care services improved emergency care by providing resources to patients and family caregivers, enhancing the quality and availability of medical documentation and accessibility of aftercare in emergencies. Areas of improvement that were identified were to promote emergency physicians' knowledge and skills in palliative care, communication, and family caregiver support by education and training. Furthermore, structures for better care on-site, thorough medical documentation, and specialized palliative care emergency facilities in hospital and prehospital care were requested.
Conclusion: Prehospital emergency care in patients with advanced incurable diseases in their familiar home environment may be improved by training EPs in palliative care, communication, and caregiver support competences. Results underline the importance of collaborative specialized palliative care and prehospital emergency care.
BACKGROUND: Q3 conditions are progressive, metabolic, neurological or chromosomal childhood conditions without a cure. Children with these conditions face an unknown lifespan as well as unstable and uncomfortable symptoms. Clinicians and other healthcare professionals are challenged by a lack of evidence for symptom management for these conditions.
AIMS: In this scoping review, we systematically identified and mapped the existing literature on symptom management for children with Q3 conditions. We focused on the most common and distressing symptoms, namely alertness, behavioural problems, bowel incontinence, breathing difficulties, constipation, feeding difficulties, sleep disturbance, temperature regulation, tone and motor problems and urinary incontinence. For children with complex health conditions, good symptom management is pertinent to ensure the highest possible quality of life.
METHODS: Scoping review. Electronic database searches in Ovid MEDLINE, Embase and CINAHL and a comprehensive grey literature search.
RESULTS: We included 292 studies in our final synthesis. The most commonly reported conditions in the studies were Rett syndrome (n=69), followed by Cornelia de Lange syndrome (n=25) and tuberous sclerosis (n=16). Tone and motor problems were the most commonly investigated symptom (n=141), followed by behavioural problems (n=82) and sleep disturbance (n=62).
CONCLUSION: The evidence for symptom management in Q3 conditions is concentrated around a few conditions, and these studies may not be applicable to other conditions. The evidence is dispersed in the literature and difficult to access, which further challenges healthcare providers. More research needs to be done in these conditions to provide high-quality evidence for the care of these children.
BACKGROUND: Many palliative care health settings that care for children and young people (CYP) at the end of life use the buccal mucosa as a route of drug administration to manage the sudden onset of symptoms, such as seizures, agitation and dyspnoea, and for breakthrough pain management. The buccal route is a minimally invasive method that delivers fast symptom relief and is useful for those with swallowing impairment or reduced enteral absorption.
AIM: This paper reports on a small retrospective study involving 26 CYP who received end-of-life care between January and December 2017 to review the advantages and disadvantages of using buccal opioids for breakthrough pain relief with a focus on diamorphine as the preferred opioid.
METHOD: A retrospective case note review.
FINDINGS: This paper shares the clinical practice experiences from one UK organisation of care for CYP at the end of their lives and contributes to the growing body of pharmacological evidence.
CONCLUSION: Buccal opioids, specifically buccal diamorphine, are an effective strategy to treat breakthrough pain or dyspnoea in CYP.
OBJECTIVE: This is the first known study which examines the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from the time of providing care to their child through bereavement. This study is informed by earlier findings that when a child is diagnosed with a chronic life-threatening illness, parents are faced with multiple stressors, leaving them with little time to invest in their spousal relationship.
PARTICIPANTS AND SETTING: A constructivist-phenomenological research paradigm was adopted and meaning-oriented interviews were conducted with 20 parental units (i.e., 6 couples, 12 lone mothers and 2 lone fathers) of Chinese, Malay and Indian ethnicities who lost their child to chronic life-threatening illness in Singapore.
RESULTS: Qualitative thematic analysis of the data revealed four themes, which describe the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from caregiving through bereavement. Findings reveal participants' tendency to concentrate on pragmatic, solution-focused communication during the period of caregiving (pragmatic interaction), avoid discussion about their emotional pain as a means of protecting their spouse (partner-oriented self-regulation), respect and acknowledge their spouse's personal coping strategies (empathic responding) and show greater appreciation and emotional expression within the spousal relationship after their child's death (affective appreciation).
CONCLUSION: Engaging in pragmatic discussions, deferring emotion-focused and potentially distressing conversations, and acknowledging their spouse's need for personal space are important coping strategies for Asian couples facing their child's chronic life-threatening illness and in the immediate aftermath of his/her death. Bereaved couples who have processed their grief individually feel ready to share their reflections with their spouse, deriving meaning and greater relational closeness through such disclosure. These findings are discussed from a cultural lens, with recommendations for healthcare professionals working with Asian parents of children with chronic life-threatening illness.
Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care teams. However, teams with specific expertise for children are not available all over the country. Families without this support need to use the hospital to get specialists' assistance.
Objective: To explore how parents of children and adolescents with life-limiting conditions think about the hospital as place of care.
Design: We conducted narrative interviews with parents and analyzed these by using a grounded theory approach.
Setting/Subjects: we interviewed 13 parents (4 fathers and 9 mothers) of 9 children with life-limiting conditions receiving or having received pediatric specialized outpatient palliative care (SOPPC) in Germany.
Results: Parents reported feelings of vulnerability, heteronomy, and disablement associated with hospital care and were afraid that their children's needs were not adequately addressed. These perceptions resulted from hospitals' standardized care structures and over- and undertreatment, a lack of continuity of care, hospital pathogens, a lack of a palliative mindset, insensitive hospital staff, the exclusion of parents from the treatment and parental care of their children, the hospital stay as a permanent state of emergency, and a waste of limited life time.
Conclusion: Pediatric hospital staff needs training in identifying and responding to palliative care needs. SOPPC structures should be expanded all over Germany to meet the needs of families of children with life-limiting conditions.
Background: Parenting a child with a serious life-threatening illness (SLTI) may impact parents' mental health. The protective association of social support with anxiety over time following an acute medical event has not been empirically tested in a sample of parents of children with oncologic and nononcologic serious illnesses.
Objective: To test the potential association of perceived social support with anxiety in parents of children with SLTIs over time.
Design: Prospective cohort study.
Setting/Subjects: Two hundred parents of 158 children in the Decision Making in Serious Pediatric Illness study, conducted at the Children's Hospital of Philadelphia.
Measurements: Parental anxiety and perceived social support were assessed using the Hospital Anxiety and Depression Scale (HADS) and the Social Provisions Scale (SPS). We performed bivariate linear regressions to test cross-sectional and longitudinal associations between the SPS and anxiety scores at baseline, 12 months, and 24 months.
Results: The average SPS total and subscale scores decreased significantly from baseline to 12 months, and increased from 12 to 24 months. The average HADS-Anxiety scores decreased significantly from baseline to 12 months, and remained stable at 24 months. Cross-sectionally, total SPS scores were negatively associated with anxiety scores at each time point. Longitudinally, SPS scores were associated with anxiety scores, although this association weakened in adjusted modeling.
Conclusions: Over a two-year period, higher levels of perceived social support were associated with lower levels of anxiety in parents of seriously ill children. Clinicians and researchers should work to optimize social support for families to improve parental mental health outcomes.
It is estimated that 11.1 million people in the United States are living with serious illness, and most people with serious illness need palliative care. Quality palliative care incorporates culturally sensitive care, and with the increasing diversity in the United States, it has become even more critical that nurses and health care professionals be prepared to meet the unique needs of those living within the diverse and underserved populations of this country. Advocating for access to palliative care for the seriously ill, culturally respectful care at the end of life, and honoring values, practices, and beliefs are essential roles of the nurse. This article presents 4 examples of individuals from diverse and potentially vulnerable US populations who face unique challenges as they deal with their life-limiting diseases and face end of life.
Background: Domains other than those commonly measured (physical, psychological, social, and sometimes existential/spiritual) are important to the quality of life of people with life-threatening illness. The McGill Quality of Life Questionnaire (MQOL) – Revised measures the four common domains. The aim of this study was to create a psychometrically sound instrument, MQOL – Expanded, to comprehensively measure quality of life by adding to MQOL-Revised the domains of cognition, healthcare, environment, (feeling like a) burden, and possibly, finance.
Methods: Confirmatory factor analyses were conducted on three datasets to ascertain whether seven new items belonged with existing MQOL-Revised domains, whether good model fit was obtained with their addition as five separate domains to MQOL-Revised, and whether a second-order factor representing overall quality of life was present. People with life-threatening illnesses (mainly cancer) or aged > 80 were recruited from 15 healthcare sites in seven Canadian provinces. Settings included: palliative home care and inpatient units; acute care units; oncology outpatient clinics.
Results: Good model fit was obtained when adding each of the five domains separately to MQOL-Revised and for the nine correlated domains. Fit was acceptable for a second-order factor model. The financial domain was removed because of low importance. The resulting MQOL-Expanded is a 21-item instrument with eight domains (fit of eight correlated domains: Comparative Fit Index = .96; Root Mean Square Error of Approximation = .033).
Conclusions: MQOL-Expanded builds on MQOL-Revised to more comprehensively measure the quality of life of people with life-threatening illness. Our analyses provide validity evidence for the MQOL-Expanded domain and summary scores; the need for further validation research is discussed. Use of MQOL-Expanded will enable a more holistic understanding of the quality of life of people with a life-threatening illness and the impact of treatments and interventions upon it. It will allow for a better understanding of less commonly assessed but important life domains (cognition, healthcare, environment, feeling like a burden) and their relationship to the more commonly assessed domains (physical, psychological, social, existential/spiritual).
At-homeness, as an aspect of well-being, can be experienced despite living with life-limiting conditions and needs for a palliative approach to care. In nursing homes, older residents with life-limiting conditions face losses and changes which could influence their experience of at-homeness. The aim of this study was to explore how nursing staff enable at-homeness for residents with life-limiting conditions. Interpretive description was employed as the design using data from participant observations and formal and informal interviews related to nursing care situations. The strategies found to be used to enable at-homeness comprising nursing staff presenting themselves as reliable, respecting the resident's integrity, being responsive to the resident's needs, collaborating with the resident in decision-making, and through nurturing comforting relationships. The result on how to enable at-homeness could be used as strategies for a person-centered palliative approach in the care for residents in nursing homes.
Dans le cadre d’une présentation au 8e congrès international du réseau francophone de soins palliatifs pédiatriques à Liège, les auteurs développent une réflexion théorico-clinique sur la fonction du pychologue travaillant auprès d’enfants dont le pronostic vital est menacé. Des entretiens semi-structurés ont été menés auprès des psychologues de liaison de l’Hôpital des Enfants Reine Fabiola à Bruxelles. La réflexion s’articule plus particulièrement autour des difficultés, ressources et besoins des psychologues qui accompagnent les enfants qui risquent de mourir. L’expérience et la formation sont identifiées comme des ressources au même titre que le travail collectif, la solidarité et le lien. Les difficultés concernent certains aspects de la collaboration et de la communication entre soignants. Le cheminement personnel apparaît comme un élément essentiel.
AIM: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions.
METHODS: Paediatricians from six Dutch university hospitals completed a survey during May to September 2017 which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general.
RESULTS: A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n=39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears, and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60% it was stated that ACP has to result in a documented code status.
CONCLUSION: Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment.
Life-limiting conditions in children in specialized pediatric palliative care (PPC) are manifold. The “Together for Short Lives” (TfSL) association established four disease categories, which represent the most common illness trajectories. Better understanding the palliative care needs and symptoms of children within these TfSL groups will result in improved anticipation of clinical problems and tailored care. During this retrospective single-center cohort study, 198 children, adolescents, and young adults (CAYAs) were in PPC. Mean age at referral was 8.7 years (range 0.0–25.0), mean duration of care 355 days (range 1–2754). One hundred six (53.5%) CAYAs died during the study period. Sixty-five (32.8%) CAYAs were assigned to TfSL-1, 13 (6.6%) to TfSL-2, 49 (24.7%) to TfSL-3, and 71 (35.9%) to TfSL-4. Home visits were conducted on average every 9.6 days in TfSL-1, 18.9 days in TfSL-2, 31.7 days in TfSL-3, and 31.8 days in TfSL-4 (p value < 0.01).
Conclusions: Intensity of palliative care significantly differed between the TfSL groups. Neurological and gastrointestinal symptoms were most prominent across all TfSL groups. Symptom cluster analysis showed distinct clusters in TfSL-1 (cluster 1, fatigue/lack of appetite/nausea/somnolence; cluster 2, dyspnea/fear/myoclonus/seizures/spasticity) and TfSL-3/4 (cluster 1, spasticity; cluster 2, all other symptoms).
L’objectif de l’étude était de décrire les pratiques des obstétriciens français face au choix des parents de poursuivre la grossesse après l’annonce d’une pathologie fœtale de particulière gravité, non curable. L’étude était une étude descriptive, transversale et nationale par questionnaires anonymes. La majorité des obstétriciens n’ont pas de formation spécifique en soins palliatifs ou éthique et ne disposent pas d’un protocole encadrant ces prises en charge, mais jugent ce document utile. Les obstétriciens jouent un rôle important dans ces situations.
Background: Polypharmacy is associated with dyspnea in cross-sectional studies, but associations have not been determined in longitudinal analyses. Statins are commonly prescribed but their contribution to dyspnea is unknown. We determined whether polypharmacy was associated with dyspnea trajectory over time in adults with advanced illness enrolled in a statin discontinuation trial, overall, and in models stratified by statin discontinuation.
Methods: Using data from a parallel-group unblinded pragmatic clinical trial (patients on statins =3 months with life expectancy of 1 month to 1 year, enrolled in the parent study between June 3, 2011, and May 2, 2013, n = 308/381 [81%]), we restricted analyses to patients with available baseline medication count and =1 dyspnea score. Polypharmacy was assessed by self-reported chronic medication count. Dyspnea trajectory group, our primary outcome, was determined over 24 weeks using the Edmonton Symptom Assessment System.
Results: The mean age of the patients was 73.8 years (standard deviation [SD]: ±11.0) and the mean medication count was 11.6 (SD: ±5.0). We identified 3 dyspnea trajectory groups: none (n = 108), mild (n = 130), and moderate–severe (n = 70). Statins were discontinued in 51.8%, 48.5%, and 42.9% of patients, respectively. In multivariable models adjusting for age, sex, diagnosis, and statin discontinuation, each additional medication was associated with 8% (odds ratio [OR] = 1.08 [1.01-1.14]) and 16% (OR = 1.16 [1.08-1.25]) increased risk for mild and moderate–severe dyspnea, respectively. In stratified models, polypharmacy was associated with dyspnea in the statin continuation group only (mild OR = 1.12 [1.01-1.24], moderate–severe OR = 1.24 [1.11-1.39]) versus statin discontinuation (mild OR = 1.03 [0.95-1.12], and moderate–severe OR = 1.09 [0.98-1.22]).
Conclusion: Polypharmacy was strongly associated with dyspnea. Prospective interventions to decrease polypharmacy may impact dyspnea symptoms, especially for statins.
Patients at end of life often express a desire to travel, and many have requests that go unfulfilled. Studies show that a majority of patients have a desire to return to their place of birth to die when presented with the option, yet goals-of-care conversations do not routinely include travel desires for numerous reasons. Patients faced with a life-limiting illness are at greater risk of depression, withdrawal, denial, anger, and feelings of helplessness. When palliative care teams assist patients with end-of-life travel, they empower them with a greater sense of control over the dying process. Improving goals-of-care conversations regarding medical travel begins with well-developed communication skills and a knowledge of available options. This article primarily focuses on the recommendation of medical travel as a goals-of-care comfort measure for the palliative care patient.
AIMS: Older patients with life-limiting illness (LLI) and limited life expectancy (LLE) continue to receive potentially inappropriate medicines, consequently deprescribing is often necessary. However, deprescribing in this population can be complex and challenging. Therefore, we aimed to investigate the evidence for outcomes of deprescribing interventions in older patients with LLI and LLE.
METHODS: Studies on deprescribing intervention and their outcomes in age =65 years with LLI and LLE were searched using PubMed, EMBASE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO and Google Scholar. Medication appropriateness was primary outcome, while clinical and cost-related outcomes were secondary. Eligibility, data extraction and quality assessment were followed by a narrative synthesis of data.
RESULTS: Of nine studies (1371 participants), three reported on primary outcome. One study showed a significant reduction in medication inappropriateness by 34.9% (p<0.001) from admission to close-out, the second achieved 29.4% (p<0.001) and 15.1% (p=0.003) reduction at 12 and 24 months respectively. The third reported that their intervention stopped (17.2%) and altered the dose (2.6%) of high risk medications. Commonly reported clinical outcomes were mortality (n=3), quality of life (n=2) and falls (n=2). Outcomes in terms of cost were reported as overall cost (n=2), medication cost (n=1) and health care expenditure (n=1).
CONCLUSIONS: Our findings suggest that deprescribing in older patients with LLI and LLE can improve medication appropriateness, and has potential for enhancement of several clinical outcomes and cost savings, but the evidence needs to be better established.
BACKGROUND: Research is needed to improve care and diminish suffering for children with life-limiting illnesses and their parents. However, there are doubts about whether it is possible to conduct paediatric end of life research safely and ethically, as it may unduly burden or inadvertently harm participants.
AIM: To compare and evaluate responses from participants to the assessments of burdens and benefits that were conducted at two timepoints during a phenomenological study that investigated parents' experiences of having a child with life-limiting cancer participate in a Phase I clinical trial.
DISCUSSION: Parents reported that participating in the study was beneficial and resulted in minimal burden or distress. The assessment of benefits and burdens at the first timepoint appeared sufficient to understand participants' experiences.
CONCLUSION: This study adds to the evidence that research may be safely and effectively conducted with parents of children who are deceased or have life-limiting illnesses. Further research is needed to evaluate the most effective timing of assessments of the burdens and benefits of their participation in research.
IMPLICATIONS FOR PRACTICE: It is important when conducting research with people with life-limiting illnesses or their family members to assess the burdens and benefits of their participation, to understand their experiences and assist in its conduct.
STUDY DESIGN: Retrospective Analysis of a Quality Improvement Program.
PURPOSE: To describe the development, implementation, and outcomes of an inpatient rehabilitation-based Short Stay Family Training (SSFT) program for patients with life-limiting conditions.
BACKGROUND: Patients with terminal illnesses often have functional limitations that prohibit discharge home after hospitalization, but their condition limits their ability to participate in rehabilitation in an inpatient setting.
METHODS AND MEASURES: After a needs assessment, an interdisciplinary team developed an SSFT program to empower patients, caregivers, and family members by giving them the tools to be independent in caring for a patient with a life-limiting condition. Patients qualifying for the program were tracked in terms of acute care physical therapy and occupational therapy discharge recommendations, diagnosis, inpatient rehabilitation unit length of stay (LoS), caregiver involvement, and discharge location. Data were retrospectively analyzed from patients over the first 16 months.
RESULTS: Since program implementation, 30 patients and their family members participated in the program. Overall, these patients experienced decreased LoS, increased discharge to home, and increased palliative care involvement in the plan of care.
CONCLUSION: Short Stay Family Training is a viable alternative to traditional inpatient rehabilitation to allow patients with life-limiting conditions to discharge home safely with caregiver support.
Background: To date, time-use studies in palliative care have been limited to exploration of time commitments of caregivers. Understanding time-use in people with a life-limiting illness might provide insight into disease progression, symptom management and quality of life.
Aim: To determine the feasibility of a repeated-measures, time-use study in people with a life-limiting illness, and their primary caregivers, and to explore associations between time-use and perceived quality of life.
Design: An observational repeated-measures feasibility pilot study. A priori criteria were established for study uptake (70%), retention (80%) and study value/burden (>=7 Numerical Rating Scale 0–10). Burden and value of the study, use of time (Multimedia Activity Recall for Children and Adults with adjunctive accelerometry) and quality of life data (EuroQol-5 Dimension-5-Level Health Questionnaire and Australia-modified Karnofsky Performance Status scale) were assessed at time-points across five consecutive months.
Setting/participants: people living with a life-limiting illness and caregivers recruited from Southern Adelaide Palliative Services outpatient clinics.
Results: A total of 10 participants (2 caregivers and 8 people with a life-limiting illness) enrolled in the study. All but one of the criteria thresholds was met: 66% of participants who consented to be screened were enrolled in the study, 80% of enrolled participants (n = 8) completed all assessments (two participants died during the study) and mean Numerical Rating Scale scores for acceptable burden and value of the study exceeded the criteria thresholds at every time-point.
Conclusion: A repeated-measures time-use study design is feasible and was not unduly burdensome for caregivers and people living with a life-limiting illness.