OBJECTIVE: To measure the associations between newly initiated palliative care in the last six months of life, healthcare use, and location of death in adults dying from non-cancer illness, and to compare these associations with those in adults who die from cancer at a population level.
DESIGN: Population based matched cohort study.
SETTING: Ontario, Canada between 2010 and 2015.
PARTICIPANTS: 113 540 adults dying from cancer and non-cancer illness who were given newly initiated physician delivered palliative care in the last six months of life administered across all healthcare settings. Linked health administrative data were used to directly match patients on cause of death, hospital frailty risk score, presence of metastatic cancer, residential location (according to 1 of 14 local health integration networks that organise all healthcare services in Ontario), and a propensity score to receive palliative care that was derived by using age and sex.
MAIN OUTCOME MEASURES: Rates of emergency department visits, admissions to hospital, and admissions to the intensive care unit, and odds of death at home versus in hospital after first palliative care visit, adjusted for patient characteristics (such as age, sex, and comorbidities).
RESULTS: In patients dying from non-cancer illness related to chronic organ failure (such as heart failure, cirrhosis, and stroke), palliative care was associated with reduced rates of emergency department visits (crude rate 1.9 (standard deviation 6.2) v 2.9 (8.7) per person year; adjusted rate ratio 0.88, 95% confidence interval 0.85 to 0.91), admissions to hospital (crude rate 6.1 (standard deviation 10.2) v 8.7 (12.6) per person year; adjusted rate ratio 0.88, 95% confidence interval 0.86 to 0.91), and admissions to the intensive care unit (crude rate 1.4 (standard deviation 5.9) v 2.9 (8.7) per person year; adjusted rate ratio 0.59, 95% confidence interval 0.56 to 0.62) compared with those who did not receive palliative care. Additionally increased odds of dying at home or in a nursing home compared with dying in hospital were found in these patients (n=6936 (49.5%) v n=9526 (39.6%); adjusted odds ratio 1.67, 95% confidence interval 1.60 to 1.74). Overall, in patients dying from dementia, palliative care was associated with increased rates of emergency department visits (crude rate 1.2 (standard deviation 4.9) v 1.3 (5.5) per person year; adjusted rate ratio 1.06, 95% confidence interval 1.01 to 1.12) and admissions to hospital (crude rate 3.6 (standard deviation 8.2) v 2.8 (7.8) per person year; adjusted rate ratio 1.33, 95% confidence interval 1.27 to 1.39), and reduced odds of dying at home or in a nursing home (n=6667 (72.1%) v n=13 384 (83.5%); adjusted odds ratio 0.68, 95% confidence interval 0.64 to 0.73). However, these rates differed depending on whether patients dying with dementia lived in the community or in a nursing home. No association was found between healthcare use and palliative care for patients dying from dementia who lived in the community, and these patients had increased odds of dying at home.
CONCLUSIONS: These findings highlight the potential benefits of palliative care in some non-cancer illnesses. Increasing access to palliative care through sustained investment in physician training and current models of collaborative palliative care could improve end-of-life care, which might have important implications for health policy.
OBJECTIVE: To measure the effectiveness of a brief intervention aimed at increasing interest in and use of advanced directives (AD) among primary care patients.
METHODS: Randomized controlled trial. In the intervention arm, patients were given brief oral information and a leaflet on AD by General Practitioners (GPs), in the control group were briefly informed about the study's purpose. Outcome variables were the proportion of patients who expressed interest in AD and those who completed one. Covariates were sex, age, education, race, Charlson comorbidity index (CCI), religion, and possession of financial will.
RESULTS: Overall, 332 patients were recruited; 58 in the intervention and 36 in the control group expressed interest in AD (p = 0.033) and 18 (5.4 %) made an AD (nine in each group). Variables associated with interest were Caucasian race (odds ratio [OR], 1.88), the intervention (OR, 1.86), and CCI extreme scores (OR, 0.36). Variables associated with AD completion were primary education/no schooling (OR, 5.69) and fewer children (OR, 0.57).
CONCLUSIONS: A brief oral and written intervention delivered by GP significantly increased interest in AD and achieved a completion rate of 5.4 %, without differences with the control group.
PRACTICE IMPLICATIONS: AD interventions should focus on individuals already likely to be motivated.
INTRODUCTION: Patients with cancer are at high risk of developing pressure ulcers at the end of life as a result of their underlying condition or cancer treatment. There are many guidelines which set out best practice with regard to end-of-life skin care. However, the complexity of palliative cancer care often means that it is challenging for nurses to make the appropriate person-centred decisions about end-of-life skin care. This study seeks to explore the perceived importance that nurses place on different factors in their end-of-life skin care for patients with cancer. The utility, face validity and content validity of a prototype decision-making tool for end-of-life skin care will also be evaluated.
METHODS AND ANALYSIS: A mixed-method design will be used to gather data from primary and secondary care nurses working in different hospitals and local authority areas across Wales. Clinical vignettes will be used to gather qualitative and quantitative data from nurses in individual interviews. Qualitative data will be subject to thematic analysis and quantitative data will be subject to descriptive statistical analysis. Qualitative and quantitative data will then be synthesised, which will enhance the rigour of this study, and pertinently inform the further development of an end-of-life skin care decision-making tool for patients with cancer.
ETHICS AND DISSEMINATION: Ethical approval to undertake the study has been granted by Cardiff University School of Healthcare Sciences Research Governance and Ethics Screening Committee. Informed consent will be obtained in writing from all the participants in this study. The results of this study will be disseminated through journal articles, as well as presentations at national and international conferences. We will also report our findings to patient and public involvement groups with an interest in improving cancer care, palliative care as well as skin care.
Background: The role of cystic fibrosis (CF) care team members in delivering palliative care (PC) remains undefined. We aimed to understand the PC skills of CF care teams.
Methods: CF care team members (“clinicians”), adults with CF (“patients”), and family caregivers (“caregivers”) rated the ability of CF clinicians to provide aspects of PC using a five-point scale (“poor” to “excellent”). Median ratings were compared between groups.
Results: A total of 70 patients, 100 caregivers, and 350 clinicians participated. Clinicians consistently rated their PC skills higher than patients or caregivers rated them, particularly for advanced PC skills. While clinicians, patients, and caregivers rated clinicians as “very good” at basic pain assessment and “good” at discussing prognostic uncertainty, clinicians rated themselves more highly at providing most skills, including simultaneous PC and standard CF care (P < .0001), basic depression assessment (P < .001), and discussing transplant, advance directives, end of life, code status, and hospice (all P < .0001). Respondents affiliated with adult CF care teams rated clinicians more highly than respondents affiliated with pediatric CF care teams at discussing lung transplant (P < .001), end of life (P = .006), advance directives (P < .001), code status (P = .012), and hospice (P = .016). Most patients (69%) and caregivers (60%) felt CF clinicians should receive more PC training.
Conclusions: Discrepancies exist among patient/caregiver and clinician perceptions of PC skills in CF, and skills of adult and pediatric teams may differ. Patients and caregivers feel clinicians’ more advanced PC skills are lacking. CF clinicians may benefit from PC training to enhance skills and to understand how and when to utilize specialty PC services.
My youngest daughter, Ruthie, died abruptly in her sleep at the age of 29. She had married ten years ago and lived far away, in central Mexico, where it was hard to get to her, and therefore all too easy to keep telling myself she was going to be all right, even when things that were happening to her were disturbing. She had been having small, partial-brain seizures for some months, which she had been told were a result of cutting back on alcohol and she was veering somewhat erratically on and off her anti-seizure medication because it often made her too sleepy to function.
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BACKGROUND: Being terminally ill affects not only the life of patients but also that of their loved ones. Dyads of adult children and their parents at the end of life may face specific challenges with regard to their relationship and interactions that need to be further examined.
AIM: The aim was to identify, describe and summarise available evidence on adult child-parent interaction and psychosocial support needs at the end of life. Research gaps in the existing literature are disclosed and recommendations for future research are presented.
DESIGN: A type 4 scoping review according to Arksey and O'Malley's (2005) methodological framework was conducted. The review includes studies regardless of study design and provides a descriptive account of foci of available research.
DATA SOURCES: The PubMed, PsycINFO, CINAHL, Google Scholar and Web of Science databases were searched from inception to 16 August 2018. An additional hand search was conducted. A highly sensitive search strategy was employed to cover all potentially relevant results.
RESULTS: The authors screened 1832 records by title and abstract, retrieved 216 full-text articles and included 15 studies from the database search. One study was identified by way of hand search. The review identified six major themes: (1) adult child-parent relationship, (2) adult child-parent communication, (3) involvement in caregiving, (4) benefit and burden of caregiving, (5) coping strategies and (6) support and information for caregivers.
CONCLUSIONS: The scoping review accentuates the paucity of studies that address both patients' and their parent/adult child caregivers' relationship, interaction and psychosocial support needs.
BACKGROUND/AIM: Palliative care (PC) is associated with increased quality of life for individuals with life-limiting illnesses. Despite growing recognition of the need for public advocacy and involvement, data on public perception of PC is limited. We sought to examine patterns of beliefs, socio-demographic differences, and the impact of information source on perceptions of PC.
METHODS: Data were analyzed from the 2018 Health Information National Trends Survey, a representative sample of public knowledge on cancer-related information. Prevalence of perceptions were estimated among adults who self-identified as knowledgeable about PC; multivariable logistic regression invoking stepwise variable selection was used to determine associations with perceptions.
RESULTS: Overall, 42.5% automatically thought of death when thinking about PC, and 31.7% equate PC with hospice care. Lower proportions perceived PC as incompatible with curative medical therapy: 15.1% believed PC means giving up, and 14.5% believed PC requires the discontinuation of other treatments. Perceptions varied by age, race, education attainment, income, and marital status. In adjusted models, source of PC information was not related to differences in PC perception: PC is giving up (P=0.28), requirement to stop curative therapy (P=0.07), and equation with hospice care (P=0.29).
CONCLUSIONS: Six in every 10 American adults knowledgeable about PC have at least one documented misperception, with differential beliefs by socio-demographic groups. Source of information had little impact on PC beliefs. These findings may help focus future measures to educate the public about the role of PC in healthcare and address gaps in knowledge.
CONTEXT: Individuals with Cystic Fibrosis (CF) frequently survive into adulthood and many have multi-faceted symptoms that impair quality of life.
OBJECTIVE: We conducted a systematic review to investigate opportunities to improve utilization of palliative care among adults with CF.
METHODS: We searched PubMed, Embase, Scopus, Web of Science and CINAHL databases from inception until September 27, 2018, and reviewed references manually. Eligible articles were published in English, involved adults age 18 years and older with CF and contained original data regarding patient outcomes related to presence of advanced care planning (ACP), symptom experience, and preferred and/or received end-of-life care.
RESULTS: We screened 652 article abstracts and 32 full text articles; 12 studies met inclusion criteria. All studies were published between 2000 and 2018. Pertinent findings include that while 43% to 65% of adults with CF had contemplated completing ACP, the majority only completed ACP during their terminal hospital admission. Patients also reported high prevalence of untreated symptoms, with adequate symptom control reported in 45% among those with dyspnea, 22% among those with pain and 51% among those with anxiety and/or depression. Prevalence of in-hospital death ranged from 62% to 100%, with a third dying in the intensive care unit (ICU). The majority received antibiotics and preventative treatments during their terminal hospitalization. Finally, treatment from a palliative care specialist was associated with a higher prevalence of patient completion of advanced directives, decreased likelihood of in-ICU death and decreased use of mechanical ventilation at end-of-life.
CONCLUSION: Adults with CF often have untreated symptoms and many opportunities exist for palliative care specialists to improve ACP completion and quality of end-of-life care.
Objectif: Au Québec, comme ailleurs dans le monde, bien que le soutien aux familles concernées par les soins palliatifs soit jugé prioritaire, peu de recherches ont été publiées sur le maintien de la relation familiale dans un contexte d’hospitalisation, pourtant essentielle au bien-être des patients et de leurs proches. La présente étude vise donc à décrire les perceptions de proches, plus précisément d’enfants d’âge adulte, sur les changements vécus dans la relation avec un parent hospitalisé en soins palliatifs.
Méthode: Six enfants adultes de patients hospitalisés en soins palliatifs ont participé à une entrevue semi-structurée. L’analyse des transcriptions d’entrevues s’inspire de l’analyse phénoménologique interprétative.
Résultats: Les résultats révèlent des changements de communications verbales et non verbales, notamment l’apparition de gestes d’affection et de connexions symboliques. L’adoption de rôles relationnels spécifiques au contexte, des enjeux relatifs aux perceptions d’implication, et l’intensité et l’éloignement de l’expérience affective sont aussi constatés. En outre, certaines croyances sur la mort et les moyens d’obtenir une conclusion à la relation pourraient avoir une influence sur l’expérience relationnelle des proches. Le personnel hospitalier semble aussi pouvoir agir indirectement sur la relation familiale selon les participants.
Conclusion: Cette étude postule l’existence de trajectoires distinctes d’évolution de la relation familiale en contexte d’hospitalisation en soins palliatifs. Elle permet par ailleurs de constater le rôle de la création de sens dans l’expérience des enfants adultes. Elle informe finalement les intervenants sur les aspects à considérer pour soutenir ces enfants adultes.
Palliative care offers patients with a serious illness and their families access to services that can improve quality of life, mood, and symptoms. However, the term palliative care is often confused with end of life or hospice services limiting its application to persons with chronic illnesses who might benefit. Non-hospice palliative care is a term that is emerging to more accurately reflect the broader care model that palliative care represents. The aim of this review was to identify the characteristics of published nonhospice palliative care interventions. We derived our sample predominantly from a recently published systematic review and meta-analysis and selected studies published since the review. Inclusion criteria were: self-described palliative care intervention studies using randomized designs for participants with lifelimiting illnesses aged 18 years or older. These 38 studies fell into 3 broad categories: primary, specialty, and hybrid models. Common challenges among these models include limited education of generalists, limited reimbursement, and limited access in certain areas. However, increasing palliative care usage has also been associated with increased hospice use and appropriate timing of referrals.
Background: Critical care consensus groups recommend providing bereavement support; however, little is known about what cardiac intensive care patients' families would find useful and beneficial in their grieving process.
Aim and objectives: To describe cardiac intensive care unit (ICU) patients' families' opinions on six common components of a bereavement programme.
Design: Qualitative, exploratory and descriptive.
Methods: Families were recruited from a cardiac ICU 13-15 months after their loved one's death. Families were interviewed using a semi-structured questionnaire. The research team analysed interview transcripts to assess and categorize families' opinions on six bereavement components.
RESULTS: Twelve family members were interviewed. Most were female (n = 8, 67%), spouses (n = 10, 83%) and white (n = 10, 83%), with a mean age (SD) of 58.4 years (16.7). Families' overall opinions of the bereavement brochure were positive, stating it was helpful in providing information about the grieving process. Families described the sympathy card as "meaningful" and "touching," although they rated it neutral in providing comfort. Most participants felt that a follow-up telephone call was unnecessary except to answer lingering questions they had. Many participants favoured the unit offering counselling services because they found therapy helpful in their grieving process. Participants had mixed feelings about a memory box; they believed it was an individual preference and should be handled in a sensitive manner. Most would not have attended a memorial service if offered because of traffic, distance, concerns about stressful feelings on returning to the hospital or because they already honoured their loved ones through a personalized memorial service.
Conclusions: Participants varied in their opinions about what bereavement services may be useful; however, this study provides insight about services that cardiac critical care units may consider when adding bereavement support.
Relevance to clinical practice: Family perspectives about bereavement needs can help structure services offered by critical care units.
Background: An essential aspect of palliative care nursing is to conserve the dignity of the patient. A Dignity Care Intervention (DCI) has been developed in Scotland to facilitate this role for nurses. The DCI is now being adapted to a Swedish context (DCI-SWE) and a central step is to identify culturally relevant, dignity-conserving care actions. These care actions will be incorporated into the DCI-SWE. Therefore, the aim of this study was to suggest care actions for conserving dignity in palliative care from the perspectives of the patients, significant others (SOs), and health care professionals (HPs) in municipality care in Sweden.
Methods: This study used a descriptive design with a qualitative approach. Data from 20 participants were collected through semi-structured individual interviews with patients (n = 3), SOs (n = 4), two focus groups with nurses (n = 9) and one focus group with physicians (n = 4) in two Swedish municipalities. These data were deductively analysed using qualitative content analysis with the Chochinov model of dignity as framework.
Results: With the Chochinov model of dignity as a framework, care actions based on suggestions from the participants were identified and presented under three themes: Illness related concerns, Dignity conserving repertoire, and Social dignity inventory. The study found both specific concrete care actions and more general approaches. Such general approaches were found to be relevant for several dignity related issues as all-embracing attitudes and behaviours. However, these general approaches could also be relevant as specific care actions to conserve dignity in relation to certain issues. Care actions were also found to be linked to each other, showing the importance of a holistic perspective in conserving dignity.
Conclusions: As part of the adaption of the DCI from a Scottish to a Swedish context, this study added relevant care actions for collaborative planning of individualised care in mutual dialogues between nurses and those they care for. The adapted intervention, DCI-SWE, has the potential to help the nurses in providing palliative care of evidence-based quality.
Objectives: To present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care.
Methods: Eight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment.
Results: The main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers' training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life.
Conclusions: The ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.
Although suffering in palliative care has received increasing attention over the past decade, the psychological processes that underpin suffering remain relatively unexplored.
Objective: To understand the psychological processes involved in the experiencing of suffering at the end phase of life.
Methods: Semistructured interviews were conducted with 20 palliative care inpatients from an academic medical centre in Kuala Lumpur, Malaysia. The transcripts were thematically analysed with NVIVO9.
Results: 5 themes of psychological processes of suffering were generated: (1) perceptions, (2) cognitive appraisals, (3) hope and the struggles with acceptance, (4) emotions and (5) clinging. A model of suffering formation was constructed.
Conclusion: The findings may inform the development of mechanism-based interventions in the palliation of suffering.
Introduction: To support general practitioners (GPs) in providing early palliative care to patients with cancer, chronic obstructive pulmonary disease or heart failure, the RADboud university medical centre indicators for PAlliative Care needs tool (RADPAC) and a training programme were developed to identify such patients and to facilitate anticipatory palliative care planning. We studied whether GPs, after 1 year of training, identified more palliative patients, and provided multidimensional and multidisciplinary care more often than untrained GPs.
METHODS: We performed a survey 1 year after GPs in the intervention group of an RCT were trained. With the help of a questionnaire, all 134 GPs were asked how many palliative patients they had identified, and whether anticipatory care was provided. We studied number of identified palliative patients, expected lifetime, contact frequency, whether multidimensional care was provided and which other disciplines were involved.
RESULTS: Trained GPs identified more palliative patients than did untrained GPs (median 3 vs 2; p 0.046) and more often provided multidimensional palliative care (p 0.024). In both groups, most identified patients had cancer.
CONCLUSIONS: RADPAC sensitises GPs in the identification of palliative patients. Trained GPs more often provided multidimensional palliative care. Further adaptation and evaluation of the tools and training are necessary to improve early palliative care for patients with organ failure.
In spite of a referral letter as an important document for communicating between physicians, whether it could also be useful as a source of information for patients has not yet established. We included cancer patients in palliative care setting, all of whom completed a standardized questionnaire regarding their opinion concerning the utility of a referral letter as a source of information and its requirements to achieve a better understanding. Completed questionnaires were received from 50 cancer patients. Ninety-four percent of participants agreed that a referral letter could be of great importance for procuring medical information to them. There was only minor divergence among the participants respecting age, gender, or education. Particular requirements were diagnosis, treatment plan, prognosis, list of drugs, and contact data of involved physicians. Additional important topics were laboratory values, alternatives to current therapy, side effects and supportive therapy, and advices regarding lifestyle and naturopathy. The majority of patients also concluded to accept technical terms in doctor's letters if a glossary supported their comprehension. The majority of patients prefer a concise description of medical information in a referral letter. This form of a letter would boost patients' involvement and help them transfer medical information to other therapists or relatives.
INTRODUCTION: Worldwide, an estimated 40 million people are in need of palliative care each year, but only 14% receive it. The incidence of diabetes mellitus (DM) in patients receiving palliative care is higher than in the general population. This association is intended to grow as a result of the rising burden of DM worldwide, ageing populations and the improved overall survival time of several diseases over the last few decades. Recommendations for DM management in the context of palliative care are mainly based on expert opinion as there is a lack of suitable evidence base and randomised clinical trials in palliative care are scarce. The aim of our systematic review is to identify the best DM management practices in order to reduce important DM-related symptoms and acute complications in patients receiving palliative care.
METHODS AND ANALYSIS: The authors will study the DM treatment and management literature, surveying the different approaches employed to treat adult palliative patients. Core health bibliographic databases will be searched from January 1990 to May 2019. Data sources will include Ovid MEDLINE, Embase, PubMed, Web of Sciences, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Scopus, Cumulative Index to Nursing and Allied Health Literature and grey literature. Details regarding diet, oral and injectable glucose-lowering medicines, insulin regimens and blood glucose monitoring strategies will be evaluated. We defined the primary outcomes to compare between DM management approaches as the presence of symptoms (polyuria, polydipsia and polyphagia) and acute complications of DM (hypoglycaemia, hyperglycaemic hyperosmolar state and diabetic ketoacidosis), and secondary outcomes as hospital admissions and deaths due to DM-related complications, health-related quality of life and glycaemic control.
ETHICS AND DISSEMINATION: The systematic review methodology does not require ethics approval due to the nature of the study design. The results of the systematic review will be published in a peer-reviewed journal and will be publicly available.
PROSPERO REGISTRATION NUMBER: CRD42018115772.
I was getting ready to go to work when my sister called from Winnipeg. “Mom is dying,” she said. Our mother was 90 years old and had experienced a stepwise decline over several months after an episode of urosepsis, complicated by recurring episodes of aspiration pneumonia, Clostridium difficile diarrhea, and a pelvic fracture. She became less interactive with each complication. She had been clear in her instructions to us that she did not want to be kept alive if she was unable to interact meaningfully with those around her. We communicated to her clinicians that she was not to be resuscitated in the event of cardiopulmonary arrest. A few weeks after that, we moved her to a skilled nursing facility, understanding that it was inevitable that she would have further episodes of aspiration. A week later, she developed a fever and was given oral antibiotics for several days. A week after completing the course of antibiotics, she developed a fever again, so the antibiotics were restarted.
Dans un contexte de complication aiguë à risque vital immédiat ou de symptôme réfractaire, la mise en œuvre d’une sédation n’est pas une pratique anodine pour les équipes soignantes. La titration est une étape incontournable et essentielle. Zoom sur les aspects pratico-pratiques de la mise en œuvre d’une sédation par midazolam chez l’adulte en situation palliative.
There are more adults than children living with congenital heart disease (CHD) due to improvements in surgical and medical CHD management today. In 2011, though, fewer than 30% of adult CHD patients were following up with specialized providers. An ineffective transition from pediatric to adult-focused medical care can result in lapses in CHD medical care, patient noncompliance, and increased risk of late complications. Early involvement of a palliative care team offers development of autonomy, identification of potential barriers to care, and support for patient and family that may improve transition success and quality of life in CHD patients.