Julian Abel

What oncologists tell patients about survival benefits of palliative chemotherapy and implications for informed consent: qualitative study

Objective To examine how much oncologists tell patients about the survival benefit of palliative chemotherapy during consultations at which decisions about treatment are made. Design Qualitative study in which consultations were observed and digitally recorded. Setting Teaching hospital and district general hospital in south west England. Participants 37 patients with advanced non-small cell lung cancer (n=12), pancreatic cancer (n=13), and colorectal cancer (n=12); and nine oncologists, including four consultants and five registrars. Main outcome measures All recordings were transcribed completely, anonymised, and electronically coded with ATLAS.ti. Constant comparison was used to identify themes and patterns. The framework method of data management, in which data were charted, was used to aid transparency of interpretation. Results During the consultations, information given to patients about survival benefit included numerical data (“about four weeks”), an idea of timescales (“a few months extra”), vague references (“buy you some time”), or no mention at all. In most consultations (26/37) discussion of survival benefit was vague or non-existent. Conclusions Most patients were not given clear information about the survival gain of palliative chemotherapy. To aid decision making and informed consent, we recommend that oncologists sensitively describe the benefits and limitations of this treatment, including survival gain.

Circles of care: should community development redefine the practice of palliative care?

Specialist palliative care, within hospices in particular, has historically led and set the standard for caring for patients at end of life. The focus of this care has been mostly for patients with cancer. More recently, health and social care services have been developing equality of care for all patients approaching end of life. This has mostly been done in the context of a service delivery approach to care whereby services have become increasingly expert in identifying health and social care need and meeting this need with professional services. This model of patient centred care, with the impeccable assessment and treatment of physical, social, psychological and spiritual need, predominantly worked very well for the latter part of the 20th century. Over the last 13 years, however, there have been several international examples of community development approaches to end of life care. The patient centred model of care has limitations when there is a fundamental lack of integrated community policy, development and resourcing. Within this article, we propose a model of care which identifies a person with an illness at the centre of a network which includes inner and outer networks, communities and service delivery organisations. All of these are underpinned by policy development, supporting the overall structure. Adoption of this model would allow individuals, communities, service delivery organisations and policy makers to work together to provide end of life care that enhances value and meaning for people at end of life, both patients and communities alike.

The impact of advance care planning of place of death, a hospice retrospective cohort study

Objectives There is limited evidence of the impact of advance care planning (ACP) on outcomes. We conducted a retrospective cohort study on deaths of all patients known to a hospice in a 2.5-year period to see if use of ACP affected actual place of death, hospital use and cost of hospital care in the last year. Results 969 patients were included. 550 (57%) people completed ACP. 414 (75%) achieved their choice of place of death. For those who chose home, 34 (11.3%) died in hospital; a care home 2 (1.7%) died in hospital; a hospice 14 (11.2%) died in hospital and 6 (86%) who chose to die in hospital did so. 112 (26.5%) of people without ACP died in hospital. Mean number of days in hospital in the last year of life was 18.1 in the ACP group and 26.5 in the non-ACP group(p<0.001). Mean cost of hospital treatment during the last year of life for those who died in hospital was £11,299, those dying outside of hospital £7,730 (p<0.001). Mean number of emergency admissions for those who died in hospital was 2.2 and who died elsewhere was 1.7 (p<0.001). Conclusions ACP can be used routinely in a hospice setting. Those who used ACP spent less time in hospital in their last year. ACP is associated with a reduction in the number of days in hospital in the last year of life with less hospital costs, supporting the assumptions made in the End of Life Care Strategy 2008.

Compassionate community networks: supporting home dying

How may communities be mobilised to help someone dying at home? This conceptual article outlines the thinking behind an innovative compassionate community project being developed at Weston-super-Mare, UK. In this project, a health professional mentors the dying person and their carer to identify and match: (a) the tasks that need to be done and (b) the members of their social network who might help with these tasks. Network members may subsequently join a local volunteer force to assist others who are network poor. Performing practical tasks may be more acceptable to some family, friends and neighbours than having to engage in a conversation about dying, and provides a familiarity with dying that is often lacking in modern societies, so in this model, behavioural change precedes attitudinal change. The scheme rejects a service delivery model of care in favour of a community development model, but differs from community development schemes in which the mentor is a volunteer rather than a health professional, and also from those approaches that strive to build community capacity before any one individual dying person is helped. The pros and cons of each approach are discussed. There is a need for evaluation of this and similar schemes, and for basic research into naturally occurring resource mobilisation at the end of life.

Palliative care reimagined: a needed shift

Palliative care, since its inception over 60 years ago, has set the standard of how to care for people who are dying. Key features among these standards have been the professional development of clinical specialisms such as palliative medicine and palliative nursing; the essential addition of the multidisciplinary team to these two new specialisms that included social, spiritual and allied health workers—an outgrowth of the recognition that routine work with the dying, their carers, and the bereaved required more than solely clinical skills; and the unique partnership with communities that yielded the volunteer movement within palliative care. Professional, evidence-based symptom management and the importance of supportive care in its widest possible sense were and remain the cornerstones of the modern palliative care approach. However, the majority of people with terminal illnesses do not have access to palliative care teams, whose main focus of care remains patients with cancer. In the context outlined above this paper therefore poses two key questions: how can we provide an equitable level of care for all people irrespective of diagnosis and how can we increase the range and quality of non-medical/nursing supportive care in a context of diminishing resources? We argue that an important opportunity and solution can be found by adopting the principles of a public health approach to end-of-life care.

Crash course in EPaCCS (Electronic Palliative Care Coordination Systems): 8 years of successes and failures in patient data sharing to learn from

Background Electronic Palliative Care Coordination Systems (EPaCCS) are Englands pre-eminent initiative in enabling advance care planning and improved communication and coordination at the end of life. EPaCCS have been under development for 8 years after being proposed, as Locality Registers, in the 2008 End of Life Care Strategy for England. EPaCCS are electronic registers or tools and processes for sharing data which aim to enable access to information about dying patients. Striking outcomes have been reported around EPaCCS, such as 77.8% of ‘Coordinate My Care’ patients dying in their preferred place. EPaCCS have, however, been extremely challenging to develop and implement, with many projects remaining continuously ‘under development’ or folding. They also continue to be suboptimally integrated with other data sharing initiatives. Rigorous research is non-existent. Discussion points We discuss the current EPaCCS landscape and way forward. We summarise key facts concerning the availability, uptake, outcomes and costs of EPaCCS. We outline 5 key challenges (scope of projects, unrealistic expectations set by existing guidance, the discrepancy between IT realities in healthcare and our broader lives, information governance and ‘death register’ associations) and 6 key drivers (robust concept, striking outcomes, national support and strong clinical leadership, clinician commitment, education and funding). Conclusions The priorities for advancing EPaCCS we propose include linking to other work streams and reframing the concept, potentially making it less ‘end of life’, overview of current EPaCCS and lessons learnt, continuing work on information standards, rethinking of national funding and new levels of individual and community involvement.

Palliative care—the new essentials

BACKGROUND If global palliative care is to successfully address challenges of unequal access, continuity of care, and health services reductionism, new practice models to address these issues need to be identified, debated and tested. This paper offers one such practice model based on a public health approach to palliative care that has so far shown promising evidence of effectiveness. METHODS We describe how four essential elements within a public health model can work together to address quality and continuity of care as well as addressing the numerous barriers of access. These elements are: (I) specialist, and (II) generalist palliative care services working with (III) communities and neighbourhoods, working in their turn with their (IV) key civic institutions. RESULTS The positive and negative impact and advantages of each of these elements is described and discussed. CONCLUSIONS A solely clinical model of palliative care is inadequate to addressing the multiple co-morbidities and access issues characteristic of modern palliative care. A public health approach based on a close partnership between clinical services and communities/civic institutions is the optimal practice model.

Recognising the importance of ‘family time-out’ in consultations: an exploratory qualitative study

Objectives Patients are often accompanied by family or companions during consultations, but little is known about how this might influence the process. We explored how the presence of a companion in a consultation contributes to communication and the decision-making process. Design Observational study. Setting A teaching hospital and a district general hospital in south-west England. Participants 31 patients and their physicians were observed during consultations in which decisions to undergo palliative chemotherapy were made. Each patient was accompanied by at least one companion. Outcome measures Communication patterns between physicians, patients and companions. Results In addition to standard patient/physician interactions, patients and companions were often found to discuss medical information and exchange opinions between themselves without the physician actively participating. We called these instances ‘family time-out’. On the occasion of disagreement between patients and companions about preferred treatment options, physicians and patients were able to agree the decision while acknowledging the differences in opinion. Conclusions Instances of ‘family time-out’ may contribute to better consultation outcomes because they are understood and supported by the patients social system. This study highlights the potentially important role of exchanges between patients and companions during consultations and how physicians may benefit from observation of such exchanges. We recommend testing the value of making space for family time-out during consultations. Also, we recommend further study into the medical ethics of family time-out. While the focus here is on palliative chemotherapy, this finding has implications for other consultations, particularly those involving difficult treatment decisions.

Reducing DNACPR complaints to zero: designing and implementing a treatment escalation plan using quality improvement methodology

Introduction Do Not Attempt Resuscitation (DNAR)decisions have traditionally formed the basis of ceiling of care discussions. However, poor quality discussions can lead to high patient and relative dissatisfaction, generating hospital complaints. Treatment escalation plans (TEPs) aim to highlight the wider remit of treatment options with a focus on effective communication. We aimed to improve TEP discussions and documentation at Weston General Hospital by introducing a standardised form. Aims and method We aimed to develop a TEP document to reduce resuscitation-related complaints by improving communication and documentation. Qualitative and quantitative data were collected over 2 years and used to develop plan-do-study-act (PDSA) cycles using quality improvement methodology. Main barriers to improvement included time constraints and clinician’s resistance. Results Analysis of patient liaison services data showed a progressive reduction in complaints regarding resuscitation, with no complaints having been received for the final six months of the project. Through use of a standardised form including treatment prompts, the quality of discussions and plans improved. Qualitative feedback demonstrated increased patient and relative satisfaction. In addition, junior doctors report the plans are helpful when making out-of-hours decisions. Conclusion Development of a user-friendly form to document patient-guided TEPs helped junior doctors to lead advanced care planning discussions. The use of PDSA cycles demonstrated improvement in the quality of forms, which in turn improved communication, documentation and satisfaction. Future developments could include involvement of specialist teams to ensure TEP forms remain relevant to all clinical areas. In addition, with widespread use of the TEP forms, the traditional tick-box DNAR could be replaced to focus on patient-led care planning.