Advance care planning (ACP) has been identified as particularly relevant for nursing home residents, but it remains unclear how or under what circumstances ACP works and can best be implemented in ...such settings. We aimed to develop a theory that outlines the hypothetical causal pathway of ACP in nursing homes, i.e. what changes are expected, by means of which processes and under what circumstances.
The Theory of Change approach is a participatory method of programme design and evaluation whose underlying intention is to improve understanding of how and why a programme works. It results in a Theory of Change map that visually represents how, why and under what circumstances ACP is expected to work in nursing home settings in Belgium. Using this approach, we integrated the results of two workshops with stakeholders (n = 27) with the results of a contextual analysis and a systematic literature review.
We identified two long-term outcomes that ACP can achieve: to improve the correspondence between residents’ wishes and the care/treatment they receive and to make sure residents and their family feel involved in planning their future care and are confident their care will be according to their wishes. Besides willingness on the part of nursing home management to implement ACP and act accordingly, other necessary preconditions are identified and put in chronological order. These preconditions serve as precursors to, or requirements for, accomplishing successful ACP. Nine original key intervention components with specific rationales are identified at several levels (resident/family, staff or nursing home) to target the preconditions: selection of a trainer, ensuring engagement by management, training ACP reference persons, in-service education for healthcare staff, information for staff, general practitioners, residents and their family, ACP conversations and documentation, regular reflection sessions, multidisciplinary meetings, and formal monitoring.
The Theory of Change map presented here illustrates a theory of how ACP is expected to work in order to achieve its desired long-term outcomes while highlighting organisational factors that potentially facilitate the implementation and sustainability of ACP. We provide the first comprehensive rationale of how ACP is expected to work in nursing homes, something that has been called for repeatedly.
Introduction
Before referring patients to a palliative care service, oncologists need to inform them about disease stage and discuss prognosis, treatment options and possible advantages of ...specialized palliative care (SPC). They often find this a complex and emotionally difficult task. As a result, they may refer their patients to SPC too late in the disease course or even not at all. This study reports findings from interviews with Belgian medical oncologists identifying the barriers they experience to introduce palliative care to their patients with advanced cancer.
Methods
The interviews were semi-structured with open-ended questions and were supported by a topic list. The transcripts were analysed during an iterative process using the grounded theory principles of open and axial coding until a final coding framework was reached.
Results
The study identified seven heterogeneous categories of barriers which discourage oncologists from discussing palliative care: oncologist-related barriers, patient-related barriers, family-related barriers, barriers relating to the physician referring the patient to the medical oncologist, barriers relating to disease or treatment, institutional/organizational barriers and societal/policy barriers. These categories are further refined into subcategories.
Discussion
These findings provide an explanation for the possible reasons why medical oncologists feel hampered in initiating palliative care and consequently discuss it rather late in the disease trajectory. The exploration and description of these barriers may serve as a starting point for revising the medical education of oncologists. They are also a reminder to hospital management and policy makers to be aware of the impact of these barriers on the daily practice of oncology.
Where people die can influence a number of indicators of the quality of dying. We aimed to describe the place of death of people with cancer and its associations with clinical, socio-demographic and ...healthcare supply characteristics in 14 countries.
Cross-sectional study using death certificate data for all deaths from cancer (ICD-10 codes C00-C97) in 2008 in Belgium, Canada, Czech Republic, England, France, Hungary, Italy, Mexico, the Netherlands, New Zealand, South Korea, Spain (2010), USA (2007) and Wales (N=1,355,910). Multivariable logistic regression analyses evaluated factors associated with home death within countries and differences across countries.
Between 12% (South Korea) and 57% (Mexico) of cancer deaths occurred at home; between 26% (Netherlands, New Zealand) and 87% (South Korea) occurred in hospital. The large between-country differences in home or hospital deaths were partly explained by differences in availability of hospital- and long-term care beds and general practitioners. Haematologic rather than solid cancer (odds ratios (ORs) 1.29-3.17) and being married rather than divorced (ORs 1.17-2.54) were most consistently associated with home death across countries.
A large country variation in the place of death can partly be explained by countries' healthcare resources. Country-specific choices regarding the organisation of end-of-life cancer care likely explain an additional part. These findings indicate the further challenge to evaluate how different specific policies can influence place of death patterns.
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DOBA, EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, IZUM, KILJ, KISLJ, MFDPS, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, SIK, UILJ, UKNU, UL, UM, UPUK, VKSCE, ZAGLJ
Cancer end-of-life care (EoLC) policies assume people want to die at home. We aimed to examine variations in preferences for place of death cross-nationally.
A telephone survey of a random sample of ...individuals aged ≥16 in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We determined where people would prefer to die if they had a serious illness such as advanced cancer, facilitating circumstances, personal values and experiences of illness, death and dying.
Of 9344 participants, between 51% (95% CI: 48% to 54%) in Portugal and 84% (95% CI: 82% to 86%) in the Netherlands would prefer to die at home. Cross-national analysis found there to be an influence of circumstances and values but not of experiences of illness, death and dying. Four factors were associated with a preference for home death in more than one country: younger age up to 70+ (Germany, the Netherlands, Portugal, Spain), increased importance of dying in the preferred place (England, Germany, Portugal, Spain), prioritizing keeping a positive attitude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal).
At least two-thirds of people prefer a home death in all but one country studied. The strong association with personal values suggests keeping home care at the heart of cancer EoLC.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
End‐of‐life sedation, though increasingly prevalent and widespread, remains a highly debated medical practice in the context of palliative medicine. This qualitative study aims to look more ...specifically at how health care workers justify their use of continuous sedation until death and which factors they report as playing a part in the decision‐making process. In‐depth interviews were held with 28 physicians and 22 nurses of 27 cancer patients in Belgium who had received continuous sedation until death in hospitals, palliative care units or at home. Our findings indicate that medical decision‐making for continuous sedation is not only based on clinical indications but also related to morally complex issues such as the social context and the personal characteristics and preferences of individual patient and their relatives. The complex role of non‐clinical factors in palliative sedation decision‐making needs to be further studied to assess which medically or ethically relevant arguments are underlying daily clinical practice. Finally, our findings suggest that in some cases continuous sedation was resorted to as an alternative option at the end of life when euthanasia, a legally regulated option in Belgium, was no longer practically possible.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK
This study examined the proportion of deaths taking place in hospitals in six European countries in relation to demographic, epidemiologic and healthcare factors. Retrospective analyses were ...performed on a database integrating death certificate data of all deaths in 2002 in Sweden and 2003 in Belgium, England, Scotland, the Netherlands and Wales (N = 891,780). Data were linked with regional healthcare statistics. Of all deaths, from 33.9% (the Netherlands) to 62.8% (Wales) occurred in hospital. Large country differences in hospital deaths were partly explained by the availability of care home and hospital beds. Differences between countries were strikingly large in older patients and cancer patients. Older patients had a higher probability of dying in hospital in Sweden, Scotland, England and Wales than in Flanders and, in particular, in the Netherlands. Cancer patients often died in hospitals in Sweden but less frequently so in the Netherlands and England. Country differences in the proportion of patients dying in hospital are only partly the result of differences in health care provision, and are in particular larger for certain patient categories, suggesting country-specific end-of-life practices in these categories. These findings can contribute to rational public health policies aimed at reducing hospital deaths.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
ObjectivesTo examine the rate and characteristics of hospitalisation in the last month of life and place of death among nursing home residents and to identify related care processes, facility factors ...and residents’ characteristics.SettingA cross-sectional study (2015) of deceased residents in 322 nursing homes in six European countries.ParticipantsThe nursing home manager (N=1634), physician (N=1132) and primary nurse (N=1384) completed questionnaires.Outcome measuresHospitalisation and place of death were analysed using generalised linear and logistic mixed models. Multivariate analyses were conducted to determine associated factors.ResultsTwelve to 26% of residents were hospitalised in the last month of life, up to 19% died in-hospital (p<0.001). Belgian residents were more likely to be hospitalised than those in Italy, the Netherlands and Poland. For those dying in-hospital, the main reason for admission was acute change in health status. Residents with a better functional status were more likely to be hospitalised or to die in-hospital. The likelihood of hospitalisation and in-hospital death increased if no conversation on preferred care with a relative was held. Not having an advance directive regarding hospitalisations increased the likelihood of hospitalisation.ConclusionsAlthough participating countries vary in hospitalisation and in-hospital death rates, between 12% (Italy) and 26% (Belgium) of nursing home residents were hospitalised in the last month of life. Close monitoring of acute changes in health status and adequate equipment seem critical to avoiding unnecessary hospitalisations. Strategies to increase discussion of preferences need to be developed. Our findings can be used by policy-makers at governmental and nursing home level.
The purpose of this Consensus Statement is to focus on implantable cardioverter-defibrillator (ICD) deactivation in patients with irreversible or terminal illness. This statement summarizes the ...opinions of the Task Force members, convened by the European Heart Rhythm Association (EHRA) and the Heart Rhythm Society (HRS), based on ethical and legal principles, as well as their own clinical, scientific, and technical experience. It is directed to all healthcare professionals who treat patients with implanted ICDs, nearing end of life, in order to improve the patient dying process. This statement is not intended to recommend or promote device deactivation. Rather, the ultimate judgement regarding this procedure must be made by the patient (or in special conditions by his/her legal representative) after careful communication about the deactivation's consequences, respecting his/her autonomy and clarifying that he/she has a legal and ethical right to refuse it. Obviously, the physician asked to deactivate the ICD and the industry representative asked to assist can conscientiously object to and refuse to perform device deactivation.
During the end of life (EOL) phase of high-grade glioma (HGG) patients, care is primarily aimed at reducing symptom burden while maintaining quality of life as long as possible. In this study, we ...evaluated the prevalence of symptoms and medication management in HGG patients during the EOL phase. We analyzed disease-specific symptoms, general EOL symptoms, symptom frequency, and medication use at 3 months and 1 week before death in a cohort of 178 HGG patients, based on questionnaires completed by physicians responsible for EOL care. In addition, information on patient’s perceived quality of care (QOC) was derived from 87 questionnaires completed by patient’s relatives. Somnolence, focal neurological deficits and cognitive disturbances were the most prevalent symptoms during the EOL phase. Overall, disease-specific symptoms occurred more often than general EOL symptoms at both 3 months and 1 week before death. Somnolence and/or dysphagia were present in 81 % of patients whose medication was withdrawn and 96 % of patients in whom antiepileptic drugs (AEDs) were withdrawn. One week before death, 65.9 % of patients with high symptom frequency experienced good QOC, compared to 87.5 % of patients with low symptom frequency (
p
= 0.032). Disease-specific symptoms are the main concern in EOL care for HGG patients. Somnolence and dysphagia may hamper the regular oral administration of drugs, and particularly AEDs, during the EOL phase. High symptom frequency at 1 week before death negatively affects patient’s perceived QOC.
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EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, KILJ, KISLJ, MFDPS, NLZOH, NUK, OBVAL, OILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UKNU, UL, UM, UPUK, VKSCE, ZAGLJ
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