Likelihood of death among hospital inpatients in New Zealand: prevalent cohort study

Objectives: (1) To establish the likelihood of dying within 12 months for a cohort of hospital inpatients in New Zealand (NZ) on a fixed census date; (2) to identify associations between likelihood of death and key sociodemographic, diagnostic and service-related factors and (3) to compare results with, and extend findings of, a Scottish study undertaken for the same time period and census date. National databases of hospitalisations and death registrations were used, linked by unique health identifier. Participants: 6074 patients stayed overnight in NZ hospitals on the census date (10 April 2013), 40.8% of whom were aged ≥65 years; 54.4% were women; 69.1% of patients were NZ European; 15.3% were Maori; 7.6% were Pacific; 6.1% were Asian and 1.9% were ‘other’. Setting: All NZ hospitals. Results: 14.5% patients (n=878) had died within 12 months: 1.6% by 7 days; 4.5% by 30 days; 8.0% by 3 months and 10.9% by 6 months. In logistic regression models, the strongest predictors of death within 12 months were: age ≥80 years (OR=5.52(95% CI 4.31 to 7.07)); a history of cancer (OR=4.20(3.53 to 4.98)); being Māori (OR=1.62(1.25 to 2.10)) and being admitted to a medical specialty, compared with a surgical specialty (OR=3.16(2.66 to 3.76)). Conclusion: While hospitals are an important site of end of life care in NZ, their role is less significant than in Scotland, where 30% of an inpatient cohort recruited using similar methods and undertaken on the same census date had died within 12 months. One reason for this finding may be the extended role of residential long-term care facilities in end of life care provision in NZ

Mastering Treatment for Sleep Apnoea: The Grounded Theory of Bargaining and Balancing Life With Continuous Positive Airway Pressure (CPAP), in the Context of Decisional Conflict and Change Theories

Continuous positive airway pressure (CPAP) treatment for sleep apnoea can be challenging for patients to master. Given limited evidence on this topic, we used constructionist grounded theory methodology to explore experiences of living with CPAP from participants' perspectives. Adults (n=16) were recruited through a main-center respiratory service in New Zealand and participated in semi-structured interviews. Data were analyzed until theoretical saturation was achieved.In this article, we present the newly constructed grounded theory of bargaining and balancing life with CPAP, which explains how participants made a series of personal decisions about whether to use and how to master CPAP. To situate, support and provide explanatory power the new theory is discussed in the context of change and decision theories to illustrate the varying phases of readiness experienced by persons preparing to engage with CPAP and the decision-making process required for effective management of CPAP at home.This study provides valuable CPAP-user centered information for the development of interventions to optimize CPAP use. Acknowledging individuals' abilities to make reasoned healthcare decisions and providing clinical environments that support the active process of bargaining and balancing may increase uptake of CPAP, and potentially other long-term therapies.Im Fall von Schlafapnoe kann das Umgehen mit Continuous Positive Airway Pressure (CPAP) für Patient/innen herausfordernd sein. Da hierzu wenig Forschung erfolgt ist, haben wir die konstruktivistische Grounded-Theory-Methodologie genutzt, um die Erfahrungen aus der Perspektive der Patient/innen zu explorieren. Sechzehn Erwachsene wurden in einem neuseeländischen Gesundheitszentrum für teilstrukturierte Interviews rekrutiert. Die Daten wurden analysiert, bis eine theoretische Sättigung erreicht war. In diesem Beitrag stellen wir unsere Grounded Theory des Aushandelns und Balancierens von CPAP-Beatmung vor, mit deren Hilfe wir erklären, welche individuellen Entscheidungen bei dem Umgang und der Nutzung von CPAP getroffen werden. Um die erklärende Kraft der Theorie zu situieren und zu stützen, diskutieren wir unsere Ergebnisse im Kontext von Entscheidungskonflikt- und Veränderungstheorien. So kann veranschaulicht werden, welche unterschiedlichen Phasen Patient/innen durchlaufen in ihrer Bereitschaft, sich mit CPAP zu befassen bzw. Entscheidungen für einen effektiven Einsatz in ihrer häuslichen Umgebung zu treffen. Mittels unserer Studie werden wichtige Nutzungsinformationen für die Optimierung von CPAP-bezogenen Interventionen verfügbar. Die Anerkennung individuell vernünftigen Gesundheitshandelns und die Bereitstellung klinischer Settings, die den Prozess des aktiven Aushandelns und Balancierens unterstützen, können die Akzeptanz von CPAP und potenziell auch anderer Langzeittherapien verbessern

Gender and palliative care: a call to arms.

There has been a systematic and largely unconscious neglect of gender in palliative care research, practice and policy. This is despite significant, although previously uncollated, evidence that gender influences almost all aspects of end-of-life preferences, experiences and care. The social situations of women, transgender people and men often differ from one another while also intersecting in complex ways with sex differences rooted in biology. If palliative care is to meet its aspiration of providing universal benefit, it urgently needs to address a range of gender inequalities currently (re)produced at the level of the laboratory all the way through to government departments. In this call to arms, we spotlight specific instances where gender inequalities have been documented, for example, regarding end-of-life caregiving, end-of-life intervention and palliative care access and benefit. We highlight how gender inequalities intersect with other social determinants of health including ethnicity and economic status to exacerbate situations of marginality. We conclude by offering some practical steps that can be taken to support the discipline to adopt a more critical gender lens to support more equitable research, policy and practice

How are the vibes? Patient and family experiences of rapport during telehealth calls in palliative care

Interactions with rapport are considered essential to palliative care and beneficial to patient outcomes. With the current interest in telehealth, more knowledge is needed about rapport during telehealth encounters in palliative care from the patient and family viewpoint. The objective of this study was to explore patient and family experiences of rapport with health professionals during telehealth interactions in the community palliative care setting. This was a qualitative Interpretive Description study, with 18 patients and 11 family member participants recruited from four hospice locations in Aotearoa, New Zealand. Semi-structured interviews were conducted, and audio recorded between November 2020 and May 2021. Data was transcribed and analysed using Reflexive thematic analysis. A COREQ checklist was completed. The major theme was “The health professional’s vibe” which developed into two subthemes: 1) Relaxed comfortable encounters, with behaviours that aided developing rapport, and 2) difficult uncomfortable encounters with behaviours detracting from developing rapport. A key finding is that the health professional’s care, presence, and communication skills affected development of rapport more than the telehealth medium used. Participants perceived rapport in telehealth calls depending on how they experienced the health professionals’ “vibe.” Rapport occurred in relaxed, comfortable encounters with health professionals who demonstrated intentional presence and caring. However, patients and families experienced uncomfortable encounters without rapport attributable to a lack of health professional presence and caring. More compelling training options are needed for health professionals regarding the development of rapport in telehealth along with further research into the impact of rapport on telehealth outcomes. Experience Framework This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework (https://theberylinstitute.org/experience-framework/). Access other PXJ articles related to this lens. Access other resources related to this lens

Likelihood of death within one year among a national cohort of hospital inpatients in Scotland

No abstract available

A population-based study of patients in Danish hospitals who are in their last year of life

Introduction: Little is known about the prevalence and distribution in Denmark of hospital inpatients who are in their last year of life. Knowledge about these patients could attract attention towards needs for their identification and for optimisation of end-of-life care initiatives. The aims of this study were to determine the proportion of prevalent in-patients who died during the following 12 months, to present characteristics among deceased and survivors, and to identify in which hospitals, departments or specialities imminently dying patients appear most frequently. Methods: This was a record-linkage cohort study of all patients, who were in public somatic hospitals in Denmark on 10 April 2013. Patients were followed for one year. Results: A total of 13,412 inpatients were resident in 26 Danish hospitals on 10 April 2013 (range: 1,173-106 patients per hospital). 22% died during the one-year follow-up (range: 17-37% per hospital. 24% men, 20% women); 27% in medical, 15% in surgical and 50% in oncological/haematological departments. The median time to death was 59 days (54/66 days for women/men). 61% died in hospital. Deceased patients were older than survivors (76 versus 64 years, median) and had longer hospital index-stays (13 versus six days, median). 25% of the deceased (n = 740) died during the index episode, corresponding to 5.5% of all the prevalent inpatients. Conclusions: More than one in five inpatients in Danish hospitals are imminently dying or in their last year of life. Knowledge of the patients’ uneven distribution in the hospital system can underpin organisational strategies to focus on end-of-life care provision

A population-based study of patients in Danish hospitals who are in their last year of life

Introduction: Little is known about the prevalence and distribution in Denmark of hospital inpatients who are in their last year of life. Knowledge about these patients could attract attention towards needs for their identification and for optimisation of end-of-life care initiatives. The aims of this study were to determine the proportion of prevalent in-patients who died during the following 12 months, to present characteristics among deceased and survivors, and to identify in which hospitals, departments or specialities imminently dying patients appear most frequently. Methods: This was a record-linkage cohort study of all patients, who were in public somatic hospitals in Denmark on 10 April 2013. Patients were followed for one year. Results: A total of 13,412 inpatients were resident in 26 Danish hospitals on 10 April 2013 (range: 1,173-106 patients per hospital). 22% died during the one-year follow-up (range: 17-37% per hospital. 24% men, 20% women); 27% in medical, 15% in surgical and 50% in oncological/haematological departments. The median time to death was 59 days (54/66 days for women/men). 61% died in hospital. Deceased patients were older than survivors (76 versus 64 years, median) and had longer hospital index-stays (13 versus six days, median). 25% of the deceased (n = 740) died during the index episode, corresponding to 5.5% of all the prevalent inpatients. Conclusions: More than one in five inpatients in Danish hospitals are imminently dying or in their last year of life. Knowledge of the patients’ uneven distribution in the hospital system can underpin organisational strategies to focus on end-of-life care provision

Transitions to palliative care in acute hospitals in England: qualitative study

Objective To explore how transitions to a palliative care approach are perceived to be managed in acute hospital settings in England

Hospital care in the last year of life

No abstract available

Dying in the margins: Experiences of dying at home for people living with financial hardship and deprivation

Home dying is a policy indicator of ‘quality dying’ in many high-income countries, but there is evidence that people living in areas of higher deprivation have a reduced likelihood of dying at home. However, there is limited research which centres the views and experiences of people living with both socioeconomic deprivation and serious advanced illness. We deployed visual methods to address this gap in knowledge, focusing on barriers to, and experiences of, home dying for people experiencing poverty and deprivation in the UK. We used photovoice and professional documentary photography between April 2021 and March 2023 with eight participants with serious advanced illness, six of whom had died by the end of the study. We also worked with four bereaved family members to create digital stories. This produced a large volume of multi-modal data which we analysed using a thematic, iterative, interpretive approach. Key findings included the high costs of dying at home, the nature and impact of which were conveyed by images such as a heating thermostat set to low. Images also expressed how for some participants, the environment inside and outside the home was experienced as oppressive and alienating because of cramped, materially poor social housing, as well as urban noise, crime, mould and damp, and a lack of access to outside space. Nevertheless, the home environment was important to all participants, particularly as a site to support the continuation of their identity and autonomy, and some were explicit about wanting to remain at home for as long as possible. This study provides unique insights regarding the significant policy shift needed to improve the extent and experience of home dying for the growing number of people dying in the context of financial hardship and deprivation both in the UK, and elsewhere