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Continuity of GP care after the last hospitalization for patients who died from cancer, chronic obstructive pulmonary disease or heart failure: A retrospective cohort study using administrative data
Abstract
Background:
Discharge from hospital to home can be a stressful experience for patients and carers. Contact with the GP is important to ensure continuity of care.
Objectives:
To investigate timing of contact with the GP and locum after the last hospitalization in the last year of life and to investigate patient and care characteristics related to contact with the GP within 2 days after discharge.
Methods:
Health insurance data were combined with data from Statistics Netherlands on patients who mainly received care at home in the last 4 months of life. Patients who died from cancer (n = 3014), chronic obstructive pulmonary disease (COPD, n = 195) or heart failure (n = 171) were compared.
Results:
First contact after hospital discharge was within 2 days for 51.7% of patients and within a week for 77.8% of patients. Patients who died from COPD or heart failure had contact less often than patients with cancer. Characteristics related to having contact within 2 days after discharge were older age, cause of death cancer, home death, timing of last hospitalization closer to death and contact with a locum in the week after discharge.
Conclusion:
Results may indicate that the GP is likely to visit patients with more care needs sooner. This would be in accordance with the finding that contact with the GP was more likely after a hospitalization closer to death and that contact within 2 days was related to contact with a locum within a week after discharge. Proactive care is necessary. This is a joint responsibility of GPs and medical specialists.
... However, although there is limited data on the service use of primary care by patients towards the end of life, existing studies indicate that there are considerable cross-country variations in both the quality and intensity of care, as well as room for improvement [12][13][14][15]. This identifies a need for more country-specific data on the use of primary care services by end of life cancer patients as an essential step to understanding and identifying gaps in service provision. ...
Background:
End of life (EoL) care becomes more complex and increasingly takes place in the community, but there is little data on the use of general practice (GP) services to guide care improvement. This study aims to determine the trends and factors associated with GP consultation, prescribing and referral to other care services amongst cancer patients in the last year of life.
Methods:
A retrospective cohort study of cancer patients who died in 2000-2014, based on routinely collected primary care data (the Clinical Practice Research DataLink, CPRD) covering a representative sample of the population in the United Kingdom. Outcome variables were number of GP consultations (primary), number of prescriptions and referral to other care services (yes vs no) in the last year of life. Explanatory variables included socio-demographics, clinical characteristics and the status of palliative care needs recognised or not. The association between outcome and explanatory variables were evaluated using multiple-adjusted risk ratio (aRR).
Results:
Of 68,523 terminal cancer patients, 70% were aged 70+, 75% had comorbidities and 45.5% had palliative care needs recognised. In the last year of life, a typical cancer patient had 43 GP consultations (Standard deviation (SD): 31.7; total = 3,031,734), 71.5 prescriptions (SD: 68.0; total = 5,074,178), and 21(SD: 13.0) different drugs; 58.0% of patients had at least one referral covering all main clinical specialities. More comorbid conditions, prostate cancer and having palliative care needs recognised were associated with more primary care consultations, more prescriptions and a higher chance of referral (aRRs 1.07-2.03). Increasing age was related to fewer consultations (aRRs 0.77-0.96), less prescriptions (aRR 1.09-1.44), and a higher chance of referral (aRRs 1.08-1.16) but less likely to have palliative care needs recognised (aRRs 0.53-0.89).
Conclusions:
GPs are very involved in end of life care of cancer patients, most of whom having complex care needs, i.e. older age, comorbidity and polypharmacy. This highlights the importance of enhancing primary palliative care skills among GPs and the imperative of greater integration of primary care with other healthcare professionals including oncologists, palliative care specialists, geriatricians and pharmacists. Research into the potential of deprescribing is warranted. Older patients have poorer access to both primary care and palliative care need to be addressed in future practices.
... [15] However, although there is limited data on the service use of primary care by patients towards the end of life, existing studies indicate that there are considerable cross-country variations in both the quality and intensity of care, as well as room for improvement. [11][12][13][14] This identifies a need for more country-specific data on the use of primary care services by end of life cancer patients as an essential step to understanding and identifying gaps in service provision. Furthermore, palliative care is a care provided to seriously ill patients that aims to improve quality of life and reduce suffering. ...
Background End of life(EoL) care becomes more complex and increasingly takes place in the community, but there is little data on the use of general practice(GP) services to guide care improvement. This study aims to determine the trends and factors associated with GP consultation, prescribing and referral to other care services amongst cancer patients in the last year of life.
Methods A retrospective cohort study of cancer patients who died in 2000-2014, based on routinely collected primary care data(the Clinical Practice Research DataLink, CPRD) covering a representative sample of the population in the United Kingdom. Outcome variables were number of GP consultations(primary), number of prescriptions and referral to other care services(yes vs no) in the last year of life. Explanatory variables included socio-demographics, clinical characteristics and the status of palliative care needs recognised or not. The association between outcome and explanatory variables were evaluated using multiple-adjusted risk ratio(aRR).
Results Of 68,523 terminal cancer patients, 70% were aged 70+, 75% had comorbidities and 45.5% had palliative care needs recognised. In the last year of life, a typical cancer patient had 43 GP consultations(Standard deviation(SD): 31.7; total=3,031,734), 71.5 prescriptions(SD: 68.0; total=5,074,178), and 21(SD: 13.0) different drugs; 58.0% of patients had at least one referral covering all main clinical specialities. More comorbid conditions, prostate cancer and having palliative care needs recognised were associated with more primary care consultations, more prescriptions and a higher chance of referral(aRRs 1.07-2.03). Increasing age was related to fewer consultations(aRRs 0.77-0.96), less prescriptions(aRR 1.09-1.44), and a higher chance of referral(aRRs 1.08-1.16) but less likely to have palliative care needs recognised(aRRs 0.53-0.89).
Conclusions GPs are very involved in end of life care of cancer patients, most of whom having complex care needs, i.e. older age, comorbidity and polypharmacy. This highlights the importance of enhancing primary palliative care skills among GPs and the imperative of greater integration of primary care with other healthcare professionals including oncologists, palliative care specialists, geriatricians and pharmacists. Research into the potential of deprescribing is warranted. Older patients have poorer access to both primary care and palliative care need to be addressed in future practices.
Context
Inadequate handovers between hospital and home can lead to adverse health outcomes. A group particularly at risk are patients at the end of life because of complex health problems, frequent care transitions and involvement of many professionals.
Objectives
To investigate healthcare providers’ views and experiences with regard to the transition from hospital to primary care in palliative care.
Methods
This was a descriptive qualitative study. Three focus group discussions were held with 28 nurses and two focus groups with nine physicians. Participants were recruited from primary and hospital care. The focus groups were audio-recorded, transcribed verbatim and analysed thematically.
Results
The following themes emerged from the data: ( 1 ) lack of identification of and communication about the last phase of life; ( 2 ) incomplete and insufficient handover; and ( 3 ) uncertainty about responsibilities. Professionals emphasize the importance of proper handovers and transitional processes in these vulnerable patients. The transition between hospital to primary care is hindered by a lack of identification of the palliative phase and uncertainties about patient awareness. Direct communication between professionals is needed but lacking. The handover itself is currently primarily focussed on physical aspects where psychosocial aspects were also found necessary. Furthermore, uncertainties with regard to physicians’ responsibility for the patient seem to further hinder professionals in the transitional process.
Conclusion
Efforts should be made to enhance knowledge and skills around identification of palliative needs and communication with patients about the end of life, especially in the hospital setting.
Background:
Timely end-of-life (EOL) discussions between patients and physicians are considered essential for high-quality EOL care, but research shows that these discussions frequently do not occur or occur late. In oncology, one barrier for timely EOL discussions is poor collaboration between oncologic specialists and GPs.
Objective:
To explore interprofessional communication and coordination between oncologic specialists and GPs on EOL discussions.
Methods:
We conducted in-depth interviews with 16 GPs and 14 oncologic specialists. Interviews were recorded, transcribed verbatim and analysed using qualitative content analysis.
Results:
EOL discussions were primarily considered the role of the GP, but oncologists' perceptions of their own roles in discussing EOL issues varied. Interprofessional coordination on who discusses what and when was mostly absent. Interprofessional communication of EOL issues usually proceeded using the patient as intermediary. This functioned well but only if three essential conditions were met: the specialist being realistic to patients about limits of treatment, informing the GP adequately and the GP being proactive in initiating EOL issues in time. However, when these conditions were absent, timely EOL discussions did not seem to occur.
Conclusions:
EOL discussions are rarely a subject of direct interprofessional communication and mainly proceed through the patient as intermediary. For implementation of EOL discussions into regular care, earlier interprofessional communication and coordination is needed, particularly if barriers for such discussions occur.
Background: Studying where people die across countries can serve as an evidence base for health policy on end-of-life care. This study describes the place of death of people who died from diseases indicative of palliative care need in 14 countries, the association of place of death with cause of death, sociodemographic and healthcare availability characteristics in each country and the extent to which these characteristics explain country differences in the place of death.
Methods: Death certificate data for all deaths in 2008 (age ≥1 year) in Belgium, Canada, the Czech Republic, England, France, Hungary, Italy, Mexico, the Netherlands, New Zealand, South Korea, Spain (Andalusia), the USA and Wales caused by cancer, heart/renal/liver failure, chronic obstructive pulmonary disease, diseases of the nervous system or HIV/AIDS were linked with national or regional healthcare statistics (N=2 220 997).
Results: 13% (Canada) to 53% (Mexico) of people died at home and 25% (the Netherlands) to 85% (South Korea) died in hospital. The strength and direction of associations between home death and cause of death, sociodemographic and healthcare availability factors differed between countries. Differences between countries in home versus hospital death were only partly explained by differences in these factors.
Conclusions: The large differences between countries in and beyond Europe in the place of death of people in potential need of palliative care are not entirely attributable to sociodemographic characteristics, cause of death or availability of healthcare resources, which suggests that countries’ palliative and end-of-life care policies may influence where people die.
Background:
The use of out-of-hours healthcare services for non-urgent health problems is believed to be related to the organisation of daytime primary care but insight into underlying mechanisms is limited. Our objective was to examine the association between daytime general practice characteristics and the use of out-of-hours care GP cooperatives.
Methods:
A cross-sectional observational study in 100 general practices in the Netherlands, connected to five GP cooperatives. In each GP cooperative, we took a purposeful sample of the 10 general practices with the highest use of out-of-hours care and the 10 practices with the lowest use. Practice and population characteristics were obtained by questionnaires, interviews, data extraction from patient registration systems and telephone accessibility measurements. To examine which aspects of practice organisation were associated with patients' use of out-of-hours care, we performed logistic regression analyses (low versus high out-of-hours care use), correcting for population characteristics.
Results:
The mean out-of-hours care use in the high use group of general practices was 1.8 times higher than in the low use group. Day time primary care practices with more young children and foreigners in their patient populations and with a shorter distance to the GP cooperative had higher out-of-hours primary care use. In addition, longer telephone waiting times and lower personal availability for palliative patients in daily practice were associated with higher use of out-of-hours care. Moreover, out-of-hours care use was higher when practices performed more diagnostic tests and therapeutic procedures and had more assistant employment hours per 1000 patients. Several other aspects of practice management showed some non-significant trends: high utilising general practices tended to have longer waiting times for non-urgent appointments, lower availability of a telephone consulting hour, lower availability for consultations after 5 p.m., and less frequent holiday openings.
Conclusions:
Besides patient population characteristics, organisational characteristics of general practices are associated with lower use of out-of-hours care. Improving accessibility and availability of day time primary day care might be a potential effective way to improve the efficient use of out-of-hours care services.
Since many patients spend most of the time at home at the end of life, this may affect the burden for family carers and constitute a risk factor for the patients' hospitalisation. This study aimed to explore family carers' burden in the final three months of the patient's life, from the perspective of both carers and general practitioners (GPs), and to assess whether family burden, as defined by the GP, is associated with hospitalisation.
A cross-sectional nationwide survey among GPs and family carers was performed. Participants were 194 GPs and 74 family carers of patients who died non-suddenly. Additionally, in-depth interviews were conducted with 18 family carers. For the quantitative analyses descriptive statistics, weighted Kappa and multivariate logistic regression analysis was performed. For the qualitative part thematic analysis was conducted.
The proportion of family carers experiencing a fairly heavy or severe burden increased significantly from 32% (second and third months before death) to 66% (one week before death). Most carers (95%) felt an emotional burden and 29% felt a physical burden in the final week. Three-quarters of carers did not perceive their burden as a problem because caring often felt rewarding. No significant association was found between the characteristics of family caregivers or professional care and the degree of family caregiver burden. Also, there was no significant evidence that patients of family carers for whom the GP assessed a fairly heavy to severe burden, were more likely to be hospitalised.
The different overall assessment of family carers' burden between GPs and family carers and the increasing emotional and physical burden of family carers towards the end constitute relevant information for GPs that will help them understand and anticipate carers' personal needs.
Nowadays, palliative care is considered as a care continuum that may start early in the course of the disease. In order to address the evolving needs of patients for palliative care in time, GPs should be aware in good time of the diagnosis and of the imminence of death. The aim of the study was to gain insight into how long before a non-sudden death the diagnosis of the disease ultimately leading to death is made and on what kind of information the diagnosis is based. In addition, we aimed to explore when, and based on what kind of information, GPs become aware that death of a patient will be in the foreseeable future.
A written questionnaire focusing on the GPs' experiences with their last patient who died non-suddenly was sent to a random representative sample of 850 GPs in the Netherlands.
The data were analysed of the 297 GPs who responded. 76% of the reported cases were cancer patients and 24% were patients with another non-sudden cause of death. The diagnosis was made only in the last week of life for 15% of the non-cancer patients and 1% of the patients with cancer. GPs were most likely to have been informed of the diagnosis by the medical specialist, although particularly in the case of non-cancer patients GPs also relied on their own assessment of the diagnosis or on other information sources.The GP remained unaware that the patient would die in the foreseeable future until the last week of life in 26% of the non-cancer group, while this was the case for only 6% of the cancer patients. GP's awareness was most likely to be based on the GP's own observations of problems and/or symptoms.
The GP often only becomes aware of a fatal diagnosis and of death in the foreseeable future at a late stage in the disease trajectory, particularly in the case of non-cancer patients. It can be assumed that if the diagnosis and the nearing death are only recognised at a late stage, palliative care is either started at a very late stage or not at all.
Background Advocates for quality and safety have called for healthcare that is patient-centred and decision-making that involves patients.
Objective The aim of the paper is to explore the barriers and facilitators to patient-centred care in the hospital discharge process.
Methods A qualitative study using purposive sampling of 192 individual interviews and 26 focus group interviews was conducted in five European Union countries with patients and/or family members, hospital physicians and nurses, and community general practitioners and nurses. A modified Grounded Theory approach was used to analyse the data.
Results The barriers and facilitators were classified into 15 categories from which four themes emerged: (1) healthcare providers do not sufficiently prioritise discharge consultations with patients and family members due to time restraints and competing care obligations; (2) discharge communication varied from instructing patients and family members to shared decision-making; (3) patients often feel unprepared for discharge, and postdischarge care is not tailored to individual patient needs and preferences; and (4) pressure on available hospital beds and community resources affect the discharge process.
Conclusions Our findings suggest that involvement of patients and families in the preparations for discharge is determined by the extent to which care providers are willing and able to accommodate patients’ and families’ capabilities, needs and preferences. Future interventions should be directed at healthcare providers’ attitudes and their organisation's leadership, with a focus on improving communication among care providers, patients and families, and between hospital and community care providers.
Background Handover practices at hospital discharge are relatively under-researched, particularly as regards the specific risks and additional requirements for handovers involving vulnerable patients with limited language, cognitive and social resources.
Objective To explore handover practices at discharge and to focus on the patients’ role in handovers and on the potential additional risks for vulnerable patients.
Methods We conducted qualitative interviews with patients, hospital professionals and primary care professionals in two hospitals and their associated primary care centres in Catalonia, Spain.
Results We identified handover practices at discharge that potentially put patients at risk. Patients did not feel empowered in the handover but were expected to transfer information between care providers. Professionals identified lack of medication reconciliation at discharge, loss of discharge information, and absence of plans for follow-up care in the community as quality and safety problems for discharge handovers. These occurred for all patients, but appeared to be more frequent and have a greater negative effect in patients with limited language comprehension and/or lack of family and social support systems.
Conclusions Discharge handovers are often haphazard. Healthcare professionals do not consider current handover practices safe, with patients expected to transfer information without being empowered to understand and act on it. This can lead to misinformation, omission or duplication of tests or interventions and, potentially, patient harm. Vulnerable patients may be at greater risk given their limited language, cognitive and social resources. Patient safety at discharge could benefit from strategies to enhance patient education and promote empowerment.
In the Netherlands, the increase in of out-of-hours care that is provided by GP co-operatives is challenging the continuity of care for the terminally ill in general practice. Aim of this study is to investigate the views of general practitioners (GPs) on the transfer of information about terminally ill patients to the GP co-operatives. GPs were asked to give their view from two different perspectives: as a GP in their daily practice and as a locum in the GP co-operative.
Retrospective web based questionnaire sent to all 424 GPs in the Amsterdam region.
With a response rate of 42%, 177 physicians completed the questionnaire. Transfer of information to the GP co-operative about most of their terminally ill patients was reported by 82% of the GPs and 5% did not do so for any of their patients. A faster than foreseen deterioration of the patient's situation was the most frequently reported reason for not transferring information. Of those who transferred information to the GP co-operative, more than 95% reported that they provided information about the diagnosis and terminally ill status of the patient. Information about medication, patient wishes regarding treatment, and prognosis was reported by respectively 90%, 87%, and 74% of the GPs. Less than 50% of the GPs reported that they transferred information about the patient's awareness of both the diagnosis and the prognosis, about the psychosocial context, and intolerances. In their role as locum, over 90% of the GPs wanted to receive information about the diagnosis, the terminally ill status of the patient, the medication and the patient's wishes regarding treatment.
Although most GPs reported that they transferred information about their terminally ill patients to the GP co-operative, the content of this information varies considerably. Only 21% of the GPs, working out of hours as a locum, were satisfied with the quality of the information transferred.
Introduction
When people with life threatening illnesses and their carers ask about prognosis (“How long have I got?”), they are often doing more than simply inquiring about life expectancy. Within this question is another, often unspoken, question about likely patterns of decline (“What will happen?”). One aid to answering both questions may be through the use of typical illness trajectories. Thinking in terms of these trajectories provides a broad timeframe and patterns of probable needs and interactions with health and social services that can, conceptually at least, be mapped out towards death.
Such frameworks may help clinicians plan and deliver appropriate care that integrates active and palliative management. If patients and their carers gain a better understanding by considering illness trajectories this may help them feel in greater control of their situation and empower them to cope with its demands. An important implication for service planners is that different models of care will be appropriate for people with different illness trajectories. We review the main currently described illness trajectories at the end of life and draw out key clinical implications.
Methods
We searched our own database of papers, conducted a Medline search, and approached experts for additional published references (further details available from SAM). We also re-examined primary data relating to illness trajectories from our previous studies investigating the palliative care needs of people with advanced lung cancer and heart failure.1
Different trajectories for different diseases
A century ago, death was typically quite sudden, and the leading causes were infections, accidents, and childbirth. Today sudden death is less common, particularly in Western, economically developed, societies. Towards the end of life, most people acquire a serious progressive illness—cardiovascular disease, cancer, and respiratory disorders are the three leading causes—that increasingly interferes with their usual activities until death.
Three distinct illness trajectories have been described so far for people …
Background:
Empirical research suggests that the quality of patient care at the end of life (EOL) is influenced by the effectiveness of the collaboration between the general practitioners (GPs) and hospital physicians (HPs).
Aim:
To identify possible difficulties and barriers to effective collaboration at the EOL between GPs and HPs from the perspective of Swiss GPs.
Design:
Twenty-three qualitative semi-structured interviews with GPs were transcribed and analyzed using Mayring's content analysis. Interdisciplinary clinical-ethical analysis focused on the quality of GP and HP professional collaboration.
Results:
GPs described the quality of collaboration with HPs as poor, in particular the lack of communication. There were two main issues to emerge. First, infrequent communication with HPs could negatively affect the care of the patient. Second, GPs were concerned with the lack of information about hospital care and involvement in medical decision making given their longstanding relationships with their patients.
Conclusions:
The research showed that Swiss GPs were concerned with the quality of their patients' EOL care and the current level of GP/HP collaboration. GPs appealed for greater involvement with EOL care decisions based on their relationship of care and knowledge of patient preferences. These findings require further critical evaluation to explore the potential advantages for patient care. Existing evidence suggests that there are measurable health benefits from successful GP/HP collaborations. A change in the way GPs maintain involvement with their patients during hospitalizations would be warranted if it resulted in a better use of resources, better patient experiences, and better health outcomes.
/st> To investigate the correlation between length of stay (LOS) and patient satisfaction on the level of hospital wards. The underlying hypothesis is that good quality of care leads both to shorter LOS and to patients that are more satisfied.
/st> We used standardized LOS and standardized patient satisfaction data from seven specialisms: internal medicine, cardiology, pulmonology, neurology, general surgery, orthopaedic surgery and obstetrics and gynaecology in the period 2003-2010. All LOS data were derived from the National Medical Registration and patient satisfaction scores were measured by a questionnaire covering six aspects of care. The LOS data were standardized for the year of discharge, age, primary diagnosis and procedure. Patient satisfaction data were standardized for the year, age, education and health status.
/st> One hundred and eighty-eight Dutch hospital wards.
/st> The patient satisfaction data were gathered by questionnaires returned by 102 815 patients.
/st> None.
/st> Pearson correlations and two-tailed significance. between standardized mean LOS and standardized mean patient satisfaction score.
/st> We found no correlation between LOS and patient satisfaction in six out of seven specialties. We only found significantly higher patient satisfaction scores in pulmonology for some specific items on hospitals wards with a shorter LOS. These items concerned the reception on the ward, the information provided by nurses on admission, the expertise of the nursing staff, the way information was transferred from one person to another and respect for patients' privacy such as in conversations, and during physical examinations.
/st> We found no evidence that hospital wards with a relatively short mean LOS had higher, or lower, patient satisfaction than hospital wards with a relatively long LOS, with the exception of pulmonology.
Observational studies performed within routine health care databases have the advantage of their large size and, when the aim is to assess the effect of interventions, can offer a completion to randomized controlled trials with usually small samples from experimental situations. Institutional Health Insurance Databases (HIDs) are attractive for research because of their large size, their longitudinal perspective, and their practice-based information. As they are based on financial reimbursement, the information is generally reliable.
The database of one of the major insurance companies in the Netherlands, the Agis Health Database (AHD), is described in detail. Whether the AHD data sets meet the specific requirements to conduct several types of clinical studies is discussed according to the classification of the four different types of clinical research; that is, diagnostic, etiologic, prognostic, and intervention research. The potential of the AHD for these various types of research is illustrated using examples of studies recently conducted in the AHD.
HIDs such as the AHD offer large potential for several types of clinical research, in particular etiologic and intervention studies, but at present the lack of detailed clinical information is an important limitation.
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