Elsevier

The Lancet Oncology

Volume 19, Issue 11, November 2018, Pages e588-e653
The Lancet Oncology

Lancet Oncology Commission
Integration of oncology and palliative care: a Lancet Oncology Commission

https://doi.org/10.1016/S1470-2045(18)30415-7Get rights and content

Summary

Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.

Introduction

The overall aim of this Commission is to show why and how palliative care can be integrated with oncology for adults with cancer, irrespective of treatment intention, in high-income and middle-income countries. This integration will combine two main paradigms, tumour directed and patient (host) directed, through the use of the most effective and optimal resources from oncology and palliative care in well-planned, patient-centred care pathways.

The two paradigms might be understood to be representing two different cultures. Oncology has roots in mainstream medicine (ie, internal medicine), and is primarily based on the acute care model. From the mid 1960s, hospice and palliative care were established outside the main health-care systems, often financed by charities. At the time, the primary focus of palliative care was end-of-life care, with care provided by multidisciplinary teams working with patients and their families. Now, for the most part, oncological and palliative care cultures are still separate.

Research on integrating oncology and palliative care is heterogeneous. Almost all studies have been done in high-income countries, but the variation across countries, systems, and settings often limits the generalisability of findings. The 2018 Lancet Commission report on palliative care focusing on low-income and middle-income countries stated, “Poor people in all parts of the world live and die with little or no palliative care or pain relief.”1 That Commission gave a series of recommendations, such as how to quantify serious health-related suffering, and proposes an Essential Package of palliative care, which might also be relevant to high-income countries as a basic benchmark of successful implementation at the patient level. Their previous Commission also recommended international and collective action to receive universal coverage of palliative care and pain relief, and better evidence and priority-setting tools to measure the global need for palliative care and implementation policies. Given the empirical basis presented in the 2018 Lancet Commission, the recommendations are primarily focused on high-income countries, but the findings, experiences, and models presented might be highly relevant to other contexts as well.

The WHO definition of palliative care states that the competence, attitudes, and skills of palliative care should be integrated in health care in general and in cancer care, “Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, and is applicable early in the course of the illness, in conjunction with other therapies that are intended to prolong life.”2 The present paper accepts, but builds on this definition, which differs substantially from the common perception of palliative care as being synonymous with end-of-life care.

Hospital-based specialised palliative care alongside tumour-directed and life-prolonging treatment has been shown to contribute to better oncology care for patients and families, in terms of better symptom management, quality of life, satisfaction with care, and less psychological distress; some studies even suggest survival benefits.3, 4, 5 Thus, we think it is timely to rethink and reorganise the delivery of oncology and palliative care to improve treatment and promote collaboration at the appropriate levels of care. We propose models of integration that fit the tasks and responsibilities of the two main hospital categories—ie, university hospitals (tertiary) and local hospitals (secondary), and community health care (primary).

Integration of care is a complex intervention based on organisational structure and patient-centred plans. The use of standardised care pathways (SCPs) is a method or planning tool for the implementation of such complex processes. The European Pathway Association (EPA) defines SCPs as “a complex intervention of the mutual decision making and organisation of care processes for a well-defined group of patients during a well-defined period”. SCPs facilitate transitions within hospitals and between health-care levels, which should be seamless, to ensure the continuity and coordination of care. The present Commission proposes the use of SCPs as a method for the integration of oncology and palliative care.

Supportive care and palliative care focus on the patient—the host of the cancer—whereas the primary focus in oncology is on the tumour. During the past 15 years, semantic discussions have been had regarding definitions and distinctions between supportive and palliative care. The European Society for Medical Oncology (ESMO) states that supportive care should be available at any stage of the disease, whereas palliative care is focused on treatment when cure is no longer possible.6 The American Society of Clinical Oncology (ASCO) does not specify a particular time for delivery of one or the other,7 and neither ESMO nor ASCO differentiate between the content of supportive care and palliative care. Despite a similar focus, the starting points for palliative and supportive care differ; whereas palliative care started as end-of-life care, supportive care initially focused side-effects of anticancer treatment, such as chemotherapy-induced nausea and vomiting, and neutropenia. The overall goal of palliative care is to improve the patient's quality of life congruent with the patient's preferences—ie, the patient (host)-centred perspective. Thus, improvement of function, optimal symptom management, mobilisation of resources and active involvement of patient and family throughout the care process are key components. This improvement can be achieved by an integration of oncology and palliative care guided by the patient's needs

Symptom management is a key element of both supportive and palliative care. Symptoms inform diagnosis and treatment in all parts of medicine, and play a central role throughout the disease trajectory. They are a particular focus in palliative care, in that symptom alleviation is the main target for interventions.2 Symptom assessment is often not done systematically in oncology practice or not routinely incorporated into the clinical decision-making processes.

WHO defines integrated health services as “the organization and management of health services, so that people get the care they need, when they need it, in ways that are user-friendly, achieve the desired results and promote value for money”.8 In oncology, the multidisciplinary team approach that combines competence and skills in the planning of treatment care has become standard.9 This approach is an integration of disciplines at the hospital level of care (eg, among surgeons, oncologists, pathologists, radiologists, and specialist nurses). The multidisciplinary team can include palliative care specialists at any stage of the disease trajectory, irrespective of whether treatment intention is curative, life-prolonging, or palliative. Given the definition of palliative care, interventions provided by palliative care have a broad focus and can therefore not be delivered by a single profession; multiple professions organised in teams are therefore common. The composition of the teams might vary, depending on local resources and traditions, and the internal organisation of the teams might also vary, but multidisciplinarity, which draws on knowledge from different disciplines but stays within their boundaries,10 are probably the most common internal organisation. The term multidisciplinary teams will therefore be used throughout this Commission.

From a societal, ethical, and political perspective, the escalating costs of health care are a major problem. Although spending on cancer care comprises only 5% of the overall health-care budget,11 these costs continue to rise more rapidly than in other health-care areas.12 The escalating costs can be attributed to the ageing of the population, new and expensive diagnostic and treatment options, more prolonged survival of patients with metastatic disease, and a growing public demand for tumour-directed treatment at all stages of the disease. The increased complexity and escalating costs also apply to care at the end of life; about a third of the cost of cancer care is spent during the patient's last year of life.13 Planning and structure of cancer care and palliative care has the potential to reduce costs, especially when the complexity of treatment and care increases.14

Evidence-based medicine is the norm in oncology practice, but evidence as to when to start and stop anticancer treatment near the end of life has been scarce.15 The quality and quantity of research in this area has been questioned.16, 17 This also applies to research on the effects of newly registered targeted therapies and immunotherapies. There is little scientific evidence for the effect of chemotherapy in most areas of symptom management, including the treatment of pain,18 although palliative radiotherapy might be highly effective in that regard.19

It is especially important during the patient's last year of life that the attention given to the effect of tumour-directed treatment is congruent with the individual patient's perception of benefits, in terms of symptom burden and quality of life.20 Few, if any, trials give guidance for such choices. This has led to the recommendation that a set of criteria (eg, disease progression, performance status, nutritional status, weight loss, and symptom burden) should guide the discontinuation of tumour-directed treatment.21, 22 These criteria could also apply to phase 1 trials, which might have therapeutic intent, but for which the likelihood of benefit to the individual patient might be extremely small.23 As the disease progresses, the main outcomes of treatment should be continually assessed and redefined as they vary from tumour response to symptom control, preservation of function, and wellbeing.24

Shared decision-making (SDM) is a key element of cancer care, but the degree to which patients can participate as active partners in the decision-making process has been questioned, when multiple options for tumour-directed treatment are available and when life-prolonging treatment with marginal benefits are offered.25 Some patients want to live as long as possible and are willing to try intensive treatment, even if the likelihood of benefit is extremely small and the risk of side-effects that might impair quality of life and reduce residual time at home is high.26 Active patient participation presupposes sufficient and relevant knowledge of the disease and treatment options. This amount of knowledge can only be reached by the continuous provision of realistic patient-centred information. To provide this information, good communication skills among the oncologists and palliative care specialists are required, and the needs and wishes of patients and families need to be assessed systematically and used in the decision-making processes.27 For decision making for phase 1 trials, fundamental components of communication and information sharing, including discussion of prognosis and options for supportive care, are often missing from interviews.28 A more patient-centred focus might be enhanced by a multidisciplinary team approach, with systematic collaboration among team members from different professions within and across levels of care. This implies an empathic approach by health-care professionals with willingness and skills to assess and understand the patient's needs. Health-care providers need to understand, accept, communicate, and plan for home care because most patients want to spend as much time as possible at home during their last phase of life.

Section snippets

Palliative care and oncology care—development over the past four decades

In this section we briefly outline the developmental and conceptual issues of relevance to the present focus on integration of oncology and palliative care. For years cancer care has been criticised for its disproportionate focus on the tumour, compared with attention to the patient with the cancer. The concept of hospice care, and later palliative care, was introduced partly as a reaction to the absence of a patient-centred focus. Attention to palliative cancer care emerged in the 1970s,

Policy—challenges and frameworks

Demographic data show cancer incidence and prevalence are rapidly increasing, and that the population is ageing with multiple chronic comorbidities. A 2014 study83 presenting various models for extrapolation in high-income countries found that 69–82% of those who die need palliative care. Consequently, an augmented need for palliative care at all health-care levels is expected.

Palliative care has been identified as an integrated part of the cancer care pathways by professional international

Societal challenges

Despite the growing evidence for the benefits of integration of palliative care and oncology for patients and those close to them and to health-care systems, many challenges remain. Some of the challenges can be considered societal; ie, problems in the interactions and structures within society and the normal patterns of practice. Societies are comprised of many different communities, in turn comprised of many different groups of people; any issues associated with these groups can be described

The importance of prognosticating in oncology and palliative care

Prognostication is the skill of predicting future outcomes. The outcome that is most commonly predicted is the duration of patient survival, although one can also prognosticate about other clinically relevant outcomes, such as symptomatic response to palliative treatment, discharge from hospital, or recovery of function. Once patients have received an accurate diagnosis of cancer, the next question is frequently about the likely prognosis.241

Oncologists are routinely required to prognosticate.

Patient-centredness—content, method, and clinical implications

The Institute of Medicine defines patient-centredness as, “care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions”.313 This approach is recommended in all areas of medicine, but its content and methods have been considered particularly appropriate in cancer care.314 Central to this approach is patient-centred communication that aims to foster healing relationships, exchange information,

Models of palliative care integration

The overall aim of integration of health-care services is to coordinate care among providers and across settings, so that patients and their families have access to the care they need when they need it, resulting in improved health outcomes.42 Thus, a key question is: how should integration or collaboration occur between the two disciplines, oncology and palliative care? Internationally, several different organisational models have been developed, some of which have been tested in clinical

The role of education: challenges and recommendations

Several of the previous sections have highlighted the need for education of health-care providers as a key factor for the promotion of integration of oncology and palliative care, both on the clinical and organisational levels. This is in line with recommendations from experts, stakeholders, and professional health organisations.44, 503, 504 At present, the need for basic and specialist competence in palliative care is unmet at all levels of health care, which calls for increased educational

Research

With increasing integration of oncology and palliative care, specialist palliative care is no longer only involved in the last days and weeks of life, but throughout the disease journey—from the time of diagnosis of advanced cancer. Patients are often concurrently managed by the oncology and palliative care teams, creating ample opportunities for collaborative research to improve patient care.

A 2011 systematic review16 that examined the quantity, design, and scope of palliative oncology

Summary and call for action

During the preparation of this Commission, the heterogeneity of the organisations, the content of the models, and the performance in clinical practices have become evident. The heterogeneity goes even further into the content of the education programmes, including the presence of palliative care in oncology training (if present at all), and the structure, content, and (absence of) formalisation of palliative medicine as a specialty in many countries. This heterogeneity together with the absence

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