Coordination of care for individuals with advanced progressive conditions: a multi-site ethnographic and serial interview study

Background

Coordination of care for individuals with advanced progressive conditions is frequently poor.

Aim

To identify how care is coordinated in generalist settings for individuals with advanced progressive conditions in the last year of life.

Design and setting

A mixed methods study of three UK generalist clinical settings producing three parallel case studies: an acute admissions unit in a regional hospital, a large general practice, and a respiratory outpatient service.

Method

Ethnographic observations in each setting, followed by serial interviews of patients with advanced progressive conditions and their family carers in the community. A spectrum of clinicians and healthcare workers were also interviewed.

Results

Ethnographic observations were conducted for 22 weeks. A total of 56 patients, 25 family carers and 17 clinicians yielded 198 interviews. Very few participants had been identified for a palliative approach. Rapid throughput of hospital patients and time pressures in primary care hindered identification of palliative care needs. Lack of care coordination was evident during emergency admissions and discharges. Patient, families, and professionals identified multiple problems relating to lack of information, communication, and collaboration at care transitions. Family carers or specialist nurses, where present, usually acted as the main care coordinators.

Conclusion

Care is poorly coordinated in generalist settings for patients in the last year of life, although those with cancer have better coordinated care than other patients. A model to improve coordination of care for all individuals approaching the end of life must ensure that patients are identified in a timely way, so that they can be assessed and their care planned accordingly.     

Are UK primary care teams formally identifying patients for palliative care before they die?

Background

The palliative care approach has the potential to improve care for patients with progressive life-threatening illnesses from the time of diagnosis. Policy and clinical directives in the UK advocate early identification.

Aim

To determine the extent to which practices identify patients for palliative care, including factors influencing early identification and possible effects on place of death.

Design and setting

Qualitative and quantitative data were collected from six general practices from three Scottish NHS boards and analysed.

Method

Records of patients who had died in the previous 6 months were analysed and interviews with practice staff (n = 21) and with patients currently on the practice palliative care register and bereaved relatives (n = 14) were conducted. In addition, a practice meeting was observed.

Results

In total, 29% of patients who died were recorded as being on the practice palliative care register before death. Two-thirds of patients with cancer were recorded on the register, but for those with non-malignant conditions only around 20% had any palliative care documented. This was a result of GPs not finding the current guidelines useful and being reluctant to discuss palliative care overtly with patients early in their illness. Palliative care services and documentation were geared towards patients with cancer. More district nurses than GPs saw the benefits of inclusion on the palliative care register. Only 25% of patients on the register died in hospital.

Conclusion

Most patients with advanced progressive illnesses, especially those with non-malignant disease, are not being formally identified for a palliative care approach before they die. Those identified are more likely to benefit from coordinated care and may be more likely to die at home.     

Advance care planning for cancer patients in primary care: a feasibility study

Background

Advance care planning is being promoted as a central component of end-of-life policies in many developed countries, but there is concern that professionals find its implementation challenging.

Aim

To assess the feasibility of implementing advance care planning in UK primary care.

Design of study

Mixed methods evaluation of a pilot educational intervention.

Setting

Four general practices in south-east Scotland.

Method

Interviews with 20 GPs and eight community nurses before and after a practice-based workshop; this was followed by telephone interviews with nine other GPs with a special interest in palliative care from across the UK.

Results

End-of-life care planning for patients typically starts as an urgent response to clear evidence of a short prognosis, and aims to achieve a ‘good death’. Findings suggest that there were multiple barriers to earlier planning: prognostic uncertainty; limited collaboration with secondary care; a desire to maintain hope; and resistance to any kind of ‘tick-box’ approach. Following the workshop, participants'' knowledge and skills were enhanced but there was little evidence of more proactive planning. GPs from other parts of the UK described confusion over terminology and were concerned about the difficulties of implementing inflexible, policy-driven care.

Conclusion

A clear divide was found between UK policy directives and delivery of end-of-life care in the community that educational interventions targeting primary care professionals are unlikely to address. Advance care planning has the potential to promote autonomy and shared decision making about end-of-life care, but this will require a significant shift in attitudes.     

Early identification of palliative care patients in general practice: development of RADboud indicators for PAlliative Care Needs (RADPAC)

Background

According to the World Health Organization (WHO) definition, palliative care should be initiated in an early phase and not be restricted to terminal care. In the literature, no validated tools predicting the optimal timing for initiating palliative care have been determined.

Aim

The aim of this study was to systematically develop a tool for GPs with which they can identify patients with congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), and cancer respectively, who could benefit from proactive palliative care.

Design

A three-step procedure, including a literature review, focus group interviews with input from the multidisciplinary field of palliative healthcare professionals, and a modified Rand Delphi process with GPs.

Method

The three-step procedure was used to develop sets of indicators for the early identification of CHF, COPD, and cancer patients who could benefit from palliative care.

Results

Three comprehensive sets of indicators were developed to support GPs in identifying patients with CHF, COPD, and cancer in need of palliative care. For CHF, seven indicators were found: for example, frequent hospital admissions. For COPD, six indicators were found: such as, Karnofsky score ≤50%. For cancer, eight indicators were found: for example, worse prognosis of the primary tumour.

Conclusion

The RADboud indicators for PAlliative Care Needs (RADPAC) is the first tool developed from a combination of scientific evidence and practice experience that can help GPs in the identification of patients with CHF, COPD, or cancer, in need of palliative care. Applying the RADPAC facilitates the start of proactive palliative care and aims to improve the quality of palliative care in general practice.     

Opinions of the Dutch public on palliative sedation: a mixed-methods approach

Background

Palliative sedation is defined as deliberately lowering a patient’s consciousness, to relieve intolerable suffering from refractory symptoms at the end of life. Palliative sedation is considered a last resort intervention in end-of-life care that should not be confused with euthanasia.

Aim

To inform healthcare professionals about attitudes of the general public regarding palliative sedation.

Design and setting

A cross-sectional survey among members of the Dutch general public followed by qualitative interviews.

Method

One thousand nine hundred and sixty members of the general public completed the questionnaire, which included a vignette describing palliative sedation (response rate 78%); 16 participants were interviewed.

Results

In total, 22% of the responders indicated knowing the term ‘palliative sedation’. Qualitative data showed a variety of interpretations of the term. Eighty-one per cent of the responders agreed with the provision of sedatives as described in a vignette of a patient with untreatable pain and a life expectancy of <1 week who received sedatives to alleviate his suffering. This percentage was somewhat lower for a patient with a life expectancy of <1 month (74%, P = 0.007) and comparable in the case where the physician gave sedatives with the aim of ending the patient’s life (79%, P = 0.54).

Conclusion

Most of the general public accept the use of palliative sedation at the end of life, regardless of a potential life-shortening effect. However, confusion exists about what palliative sedation represents. This should be taken into account by healthcare professionals when communicating with patients and their relatives on end-of-life care options.     

Operationalising unscheduled care policy: a qualitative study of healthcare professionals’ perspectives

Background

UK health policy aims to reduce the use of unscheduled care, by increasing proactive and preventative management of patients with long-term conditions in primary care.

Aim

The study explored healthcare professionals’ understanding of why patients with long-term conditions use unscheduled care, and the healthcare professionals’ understanding of their role in relation to reducing the use of unscheduled care.

Design and setting

Qualitative study interviewing different types of healthcare professionals providing primary care or unscheduled care services in northwest England.

Method

Semi-structured interviews were conducted with 29 healthcare professionals (six GPs; five out-of-hours GPs; four emergency department doctors; two practice nurses; three specialist nurses; two district nurses; seven active case managers). Data were analysed using framework analysis.

Results

Healthcare professionals viewed the use of unscheduled care as a necessary component of care for patients with long-term conditions. Those whose roles involved working to targets to reduce the use of unscheduled care described a tension between this and delivering optimum patient care. Three approaches to reducing unscheduled care were described: optimising the system; negotiating the system; and optimising the patient.

Conclusion

Current policy to reduce the use of unscheduled care does not take account of the perceptions of the healthcare professionals who are expected to implement them. Lipsky’s theory of street-level bureaucrats provides a framework to understand how healthcare professionals respond to imposed policies. Healthcare professionals did not see the use of unscheduled care as a problem and there was limited commitment to the policy targets. Therefore, policy should aim for whole-system change rather than reliance on individual healthcare professionals to make changes in their practice.     

Effectiveness of eHealth Interventions and Information Needs in Palliative Care: A Systematic Literature Review

Background

One of the key components in palliative care is communication. eHealth technologies can be an effective way to support communications among participants in the process of palliative care. However, it is unclear to what extent information technology has been established in this field.

Objective

Our goal was to systematically identify studies and analyze the effectiveness of eHealth interventions in palliative care and the information needs of people involved in the palliative care process.

Methods

We conducted a systematic literature search using PubMed, Embase, and LILACS according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We collected and analyzed quantitative and qualitative data regarding effectiveness of eHealth interventions and users’ information needs in palliative care.

Results

Our search returned a total of 240 articles, 17 of which met our inclusion criteria. We found no randomized controlled trial studying the effects of eHealth interventions in palliative care. Studies tended to be observational, noncontrolled studies, and a few quasi-experimental studies. Overall there was great heterogeneity in the types of interventions and outcome assessments; some studies reported some improvement on quality of care, documentation effort, cost, and communications. The most frequently reported information need concerned pain management.

Conclusions

There is limited evidence around the effectiveness of eHealth interventions for palliative care patients, caregivers, and health care professionals. Focused research on information needs and high-quality clinical trials to assess their effectiveness are needed.     

Impact of Specialist Home-Based Palliative Care Services in a Tertiary Oncology Set Up: A Prospective Non-Randomized Observational Study

Background:

Home-based specialist palliative care services are developed to meet the needs of the patients in advanced stage of cancer at home with physical symptoms and distress. Specialist home care services are intended to improve symptom control and quality of life, enable patients to stay at home, and avoid unnecessary hospital admission.

Materials and Methods:

Total 690 new cases registered under home-based palliative care service in the year 2012 were prospectively studied to assess the impact of specialist home-based services using Edmonton symptom assessment scale (ESAS) and other parameters.

Results:

Out of the 690 registered cases, 506 patients received home-based palliative care. 50.98% patients were cared for at home, 28.85% patients needed hospice referral and 20.15% patients needed brief period of hospitalization. All patients receiving specialist home care had good relief of physical symptoms (P < 0.005). 83.2% patients received out of hours care (OOH) through liaising with local general practitioners; 42.68% received home based bereavement care and 91.66% had good bereavement outcomes.

Conclusion:

Specialist home-based palliative care improved symptom control, health-related communication and psychosocial support. It promoted increased number of home-based death, appropriate and early hospice referral, and averted needless hospitalization. It improved bereavement outcomes, and caregiver satisfaction.     

Facilitators and barriers for GP�Cpatient communication in palliative care: a qualitative study among GPs, patients, and end-of-life consultants

Background

Effective communication is considered to be essential for the delivery of high-quality care. Communication in palliative care may be particularly difficult, and there is still no accepted set of communication skills for GPs in providing palliative care.

Aim

To obtain detailed information on facilitators and barriers for GP–patient communication in palliative care, with the aim to develop training programmes that enable GPs to improve their palliative care communication skills.

Design of study

Qualitative study with focus groups, interviews, and questionnaires.

Setting

GPs with patients receiving palliative care at home, and end-of-life consultants in the Netherlands.

Method

GP (n = 20) focus groups discussing facilitators and barriers, palliative care patient (n = 6) interviews regarding facilitators, and end-of-life consultant (n = 22) questionnaires concerning barriers.

Results

Facilitators reported by both GPs and patients were accessibility, taking time, commitment, and listening carefully. GPs emphasise respect, while patients want GPs to behave in a friendly way, and to take the initiative to discuss end-of-life issues. Barriers reported by both GPs and end-of-life consultants were: difficulty in dealing with former doctors'' delay and strong demands from patients'' relatives. GPs report difficulty in dealing with strong emotions and troublesome doctor–patient relationships, while consultants report insufficient clarification of patients'' problems, promises that could not be kept, helplessness, too close involvement, and insufficient anticipation of various scenarios.

Conclusion

The study findings suggest that the quality of GP–patient communication in palliative care in the Netherlands can be improved. It is recommended that specific communication training programmes for GPs should be developed and evaluated.     

Comparison of end-of-life care for older people living at home and in residential homes: a mortality follow-back study among GPs in the Netherlands

Background

The proportion of older people is increasing, therefore their place of residence and place of care at the end of life are becoming increasingly important.

Aim

To compare aspects of end-of-life care among older people in residential homes and home settings in the Netherlands.

Design and setting

Nationwide representative mortality follow-back study among GPs in the Netherlands.

Method

The study included patients aged ≥65 years who died non-suddenly, whose longest place of residence in their last year of life was at home or in a residential home (n = 498). Differences were analysed using Pearson’s χ² test, Mann-Whitney U tests, and multivariate logistic regression.

Results

Controlling for the differences between the populations in home settings and residential homes, no differences were found in treatment goals, communication about end-of-life care, or use of specialised palliative care between the two settings. However, people living in a residential home were more likely to have received palliative care from a GP than people living at home (OR 2.84, 95% confidence interval [CI] = 1.41 to 5.07). In residential homes, people more often experienced no transfer between care settings (OR 2.76, 95% CI = 1.35 to 5.63) and no hospitalisations (OR 2.2, 95% CI = 1.04 to 4.67) in the last 3 months of life, and died in hospital less often (OR 0.78, 95% CI = 0.63 to 0.97) than those people living at home.

Conclusion

Despite similar treatment goals, care in residential homes seems more successful in avoiding transfers and hospitalisation at the end of life. Especially since older people are encouraged to stay at home longer, measures should be taken to ensure they are not at higher risk of transfers and hospitalisations in this setting.     

End-of-life care conversations with heart failure patients: a systematic literature review and narrative synthesis

Background

Current models of end-of-life care (EOLC) have been largely developed for cancer and may not meet the needs of heart failure patients.

Aim

To review the literature concerning conversations about EOLC between patients with heart failure and healthcare professionals, with respect to the prevalence of conversations; patients'' and practitioners'' preferences for their timing and content; and the facilitators and blockers to conversations.

Design of study

Systematic literature review and narrative synthesis.

Method

Searches of Medline, PsycINFO and CINAHL databases from January 1987 to April 2010 were conducted, with citation and journal hand searches. Studies of adult patients with heart failure and/or their health professionals concerning discussions of EOLC were included: discussion and opinion pieces were excluded. Extracted data were analysed using NVivo, with a narrative synthesis of emergent themes.

Results

Conversations focus largely on disease management; EOLC is rarely discussed. Some patients would welcome such conversations, but many do not realise the seriousness of their condition or do not wish to discuss end-of-life issues. Clinicians are unsure how to discuss the uncertain prognosis and risk of sudden death; fearing causing premature alarm and destroying hope, they wait for cues from patients before raising EOLC issues. Consequently, the conversations rarely take place.

Conclusion

Prognostic uncertainty and high risk of sudden death lead to EOLC conversations being commonly avoided. The implications for policy and practice are discussed: such conversations can be supportive if expressed as ‘hoping for the best but preparing for the worst’.     

Associations between home death and GP involvement in palliative cancer care

Background

Most cancer patients die at institutions despite their wish for home death. GP-related factors may be crucial in attaining home death.

Aim

To describe cancer patients in palliative care at home and examine associations between home death and GP involvement in the palliative pathway.

Design of study

Population-based, combined register and questionnaire study.

Setting

Aarhus County, Denmark.

Method

Patient-specific questionnaires were sent to GPs of 599 cancer patients who died during a 9-month period in 2006. The 333 cases that were included comprised information on sociodemography and GP-related issues; for example knowledge of the patient, unplanned home visits, GPs providing their private phone number, and contact with relatives. Register data were collected on patients'' age, sex, cancer diagnosis, place of death, and number of GP home visits. Associations with home death were analysed in a multivariable regression model with prevalence ratios (PR) as a measure of association.

Results

There was a strong association between facilitating home death and GPs making home visits (PR = 4.3, 95% confidence interval [CI] = 1.2 to 14.9) and involvement of community nurses (PR = 1.4, 95% CI = 1.0 to 1.9). No other GP-related variables were statistically significantly associated with home death.

Conclusion

Active involvement of GPs providing home visits and the use of home nurses were independently associated with a higher likelihood of facilitating home death for cancer patients. The primary care team may facilitate home death, accommodating patients'' wishes. Future research should examine the precise mechanisms of their involvement.     

Effectiveness of "palliative care information booklet" in enhancing nurses' knowledge

Context:

Patients diagnosed with a disease like cancer require not only physical control of disease but also they need psychological reassurance, social and spiritual support in coming to terms with their disease. Nurses working in the specialized cancer hospitals play a significant role in the care of terminally ill patients. They must be knowledgeable, skilled and sensitive to the needs of these patients and their families in order to provide active, holistic care.

Aims:

In this study, we attempted to assess the level of knowledge about palliative care among nurses working in the oncology department using a self administered structured questionnaire and also to assess the effectiveness of information booklet designed on various aspects of palliative care on their knowledge.

Settings and Design:

Indo American Cancer Hospital, Hyderabad, AP, India. The design adopted for this study was One Group pretest – posttest, pre - experimental design.

Materials and Methods:

Hundred nurses working in Indo American Cancer Hospital, Hyderabad, AP, India were selected by using the non probability purposive sampling technique. A structured self administered questionnaire was prepared and administered as a pretest. An information booklet was developed pertaining to the general concepts of palliative care, care components (physical, social, emotional and spiritual) and role of the nurse in palliative care and it was given to the participants. As a post test, the same questionnaire was re-administered after four days to the same study subjects. Pretest and post test knowledge scores were compared and the findings were analyzed statistically.

Statistical analysis used:

Microsoft Excel and Statistical Package for Social Science package.

Results:

The post test scores were significantly higher than the pretest knowledge scores, which indicate that the developed information booklet regarding palliative care was highly effective in enhancing the knowledge levels of the nurses.

Conclusions:

The information booklet was effective in enriching the knowledge of nurses on palliative care. Enhancing the nurse’s knowledge about palliative care will promote their understanding of the needs of the advanced stage patients and will enable them to provide quality care.     

Living in uncertain times: trajectories to death in residential care homes

Background

Older people living in care homes often have limited life expectancy. Practitioners and policymakers are increasingly questioning the appropriateness of many acute hospital admissions and the quality of end-of-life care provided in care homes.

Aim

To describe care home residents’ trajectories to death and care provision in their final weeks of life.

Design and setting

Prospective study of residents in six residential care homes in three sociodemographically varied English localities: Hertfordshire, Essex, and Cambridgeshire.

Method

Case note reviews and interviews with residents, care home staff, and healthcare professionals.

Results

Twenty-three out of 121 recruited residents died during the study period. Four trajectories to death were identified: ‘anticipated dying’ with an identifiable end-of-life care period and death in the care home (n = 9); ‘unexpected dying’ with death in the care home that was not anticipated and often sudden (n = 3); ‘uncertain dying’ with a period of diagnostic uncertainty or difficult symptom management leading to hospital admission and inpatient death (n = 7); and ‘unpredictable dying’ with an unexpected event leading to hospital admission and inpatient death (n = 4). End-of-life care tools were rarely used. Most residents who had had one or more acute hospital admission were still alive at the end of the study.

Conclusion

For some care home residents there was an identifiable period when they were approaching the end-of-life and planned care was put in place. For others, death came unexpectedly or during a period of considerable uncertainty, with care largely unplanned and reactive to events.     

Quality care provision for older people: an interview study with patients and primary healthcare professionals

Background

In recent years, primary health care for the ageing population has become increasingly complex.

Aim

This study sought to explore the views and needs of healthcare professionals and older patients relating to primary care in order to identify focal areas for improving primary health care for older people.

Design and setting

This research was structured as a mixed interview study with focus groups and individual interviews. Participants were made up of primary healthcare professionals and older patients. Patients were recruited from five elderly care homes in a small city in the southern part of the Netherlands.

Method

All interviews were transcribed verbatim and analysed by two individual researchers applying constant comparative analysis. Data collection proceeded until saturation was reached.

Results

Participants in the study agreed about the need for primary care for older patients, and showed sympathy with one another’s perspectives. They did note, however, a number of obstacles hindering good healthcare provision. The major themes that arose were: ‘autonomy and independence’, ‘organisational barriers’, and ‘professional expertise’. Participants generally noted that it is important to clarify differences in perspectives about good care between patients and healthcare professionals.

Conclusion

Effective primary care intervention for older patients requires mutual understanding of the expectations and goals of all parties involved. There are a number of important requirements, especially accessible patient information in the form of care plans; specialist training for nurses and GPs on complex care and multimorbidity; and training on discussing autonomy, goal setting, and shared care. Further improvement in health care for older people and its evaluation research should focus on these requirements.     

Creation of Minimum Standard Tool for Palliative Care in India and Self-evaluation of Palliative Care Programs Using It

Background:

It is important to ensure that minimum standards for palliative care based on available resources are clearly defined and achieved.

Aims:

(1) Creation of minimum National Standards for Palliative Care for India. (2) Development of a tool for self-evaluation of palliative care organizations. (3) Evaluation of the tool in India. In 2006, Pallium India assembled a working group at the national level to develop minimum standards. The standards were to be evaluated by palliative care services in the country.

Materials and Methods:

The working group prepared a “standards” document, which had two parts – the first composed of eight “essential” components and the second, 22 “desirable” components. The working group sent the document to 86 hospice and palliative care providers nationwide, requesting them to self-evaluate their palliative care services based on the standards document, on a modified Likert scale.

Results:

Forty-nine (57%) palliative care organizations responded, and their self-evaluation of services based on the standards tool was analyzed. The majority of the palliative care providers met most of the standards identified as essential by the working group. A variable percentage of organizations had satisfied the desirable components of the standards.

Conclusions:

We demonstrated that the “standards tool” could be applied effectively in practice for self-evaluation of quality of palliative care services.     

Integrating preconception care for women with diabetes into primary care: a qualitative study

Background

National guidelines emphasise the need to deliver preconception care to women of childbearing age. However, uptake of the services among women with diabetes in the UK is low. Questions arising include how best to deliver preconception care and what the respective roles of primary versus secondary caregivers might be.

Aim

To explore the perspective of GPs and secondary care health professionals on the role of GPs in delivering preconception care to women with diabetes.

Design of study

Qualitative, cross-sectional study.

Setting

A London teaching hospital and GP practices in the hospital catchment area.

Method

Semi-structured interviews with GPs and members of the preconception care team in secondary care. Thematic analysis using the framework approach.

Results

GPs and secondary care professionals differ in their perception of the number of women with diabetes requiring preconception care and the extent to which preconception care should be integrated into GPs'' roles. Health professionals agreed that GPs have a significant role to play and that delivery of preconception care is best shared between primary and secondary care. However, the lack of clear guidelines and shared protocols detailing the GP''s role presents a challenge to implementing ‘shared’ preconception care.

Conclusion

GPs should be more effectively involved in providing preconception care to women with diabetes. Organisational and policy developments are required to support GPs in playing a role in preconception care. This study''s findings stress the importance of providing an integrated approach to ensure continuity of care and optimal pregnancy preparation for women with diabetes.