Authors:

Augusto Caraceni

Barry Laird

Marianne J. Hjermstad

Lisa Heide Koteng

Per Sjøgren

Stein Kaasa

Abstract

Palliative care, a patient-centred approach that addresses the physical, emotional, spiritual, and social needs of individuals with life-limiting illnesses, has become an essential component of modern cancer care. By combining cutting-edge research, compassionate care, and effective symptom management, palliative care has demonstrated its ability to significantly improve the quality of life for patients with cancer. Herein a historical exploration of the evolution of palliative care in Europe is described within the context of cancer care. The origins of palliative care are traced, with a particular focus on the development of the first modern hospice and its impact on the field. The challenges and successes of integrating palliative care into the broader oncology landscape is explored, including the development of specialised palliative care teams and the integration of palliative care principles into routine cancer care. Research in the field of palliative care, including advancements in symptom management, pain control, and end-of-life care is appraised and the emerging trends and challenges in palliative care (e.g. adapting to a changing oncology landscape) are discussed. By understanding the evolution of palliative care in European cancer care, we can gain valuable insights into its current state and future potential. Our aim is to provide a comprehensive overview of the field, highlighting its significance in improving the quality of life for patients with cancer and its ongoing contributions to healthcare.

Introduction

Palliative care in oncology has a clear mandate: to care for patients and their loved ones, improving the cancer journey by optimising symptoms, quality of life, and through this improve outcomes. Born from the compassionate ideals of the hospice movement, palliative care has evolved into a specialised field that integrates into clinical care, addressing the complex physical, emotional, and social needs of patients and families. For decades, researchers and clinicians have recognised the significant gap in symptom control, communication, and support for patients with cancer, leading to sub-optimal care. In response, palliative care has emerged as a beacon, offering a holistic and person-centred approach that prioritises quality of life and alleviates suffering at all stages of cancer. ^[1]

Yet, challenges are ever present and to fully map the future course of palliative care, it is important to appraise its beginnings, key achievements, and identify areas that require ongoing attention. Herein, we present a narrative of the history of palliative care in European cancer care, using this opportunity to reflect but also to assess where the challenges exist now and in the future; thus, from Vision to Reality.

The history of palliative care

The origins of palliative care can be traced back to the pioneering work of individuals such as Dame Cicely Saunders, whose holistic approach emphasised pain management, psychosocial support, and spiritual care – Figure 1. Her significant contribution was to establish a medical discipline focused on the subjective exploration of patients' experiences, making them central to diagnosis, therapy, and care—what is now called patient-centred care. She aimed to address the often-neglected aspect of patients' lives that encompassed the treatment of incurable disease, extending support beyond curative treatment through to the end of life. As she poignantly stated, "You matter because you are you, and you matter until the end of your life."

Contrary to the ideal that individuals such as Cicely Saunders initiated palliative care, it was the patients who were the true pioneers of the modern hospice movement, which ultimately gave rise to palliative care. The first founding patient met by Cicely Saunders in 1947, David Tasma, had inoperable gastric cancer. ^[2]

This early encounter inspired Saunders' work, leading to the establishment of St Christopher’s Hospice in London in 1967, the first modern hospice. Since then, the global evolution of palliative care has shaped the approach to compassionate end-of-life care and symptom management in the oncology arena.

However, reaching this point has been challenging as historically cancer treatment primarily focused on aggressive interventions aimed at curing the disease or prolonging life. This oncological approach was often in stark contrast to the initial palliative care approach which was predominantly end-of-life care. The equipoise of these contrasting approaches was that when tumoricidal treatment was the mainstay of therapy, it resulted in inadequate attention to symptom management and quality of life for patients, particularly those with treatable but not curable cancer.

A milestone in the contribution of palliative care to the field of oncology can be traced back to the 1982 World Health Organisation (WHO) campaign for cancer control, which was based on three mission pillars: prevention, treatment, and pain relief. The WHO Analgesic Ladder for pain control, designed, studied, and implemented worldwide, emerged from the work of an international group of experts in pain management, cancer pain, and hospice care. ^[3] The principles of opioid use and morphine efficacy included in the ladder were largely derived from the hospice experience of Robert Twycross at St Christopher’s Hospice. ^[4]

Contributions also came from Kathleen Foley, a neurologist and cancer pain expert at Memorial Sloan Kettering Cancer Center in New York, and Vittorio Ventafridda, an anaesthesiologist from the National Cancer Institute in Milan.^{[5] [6]}

The dissemination of the WHO Analgesic Ladder ^[7] had an extraordinary impact, initiating the concept of early integration between oncology and palliative care, which was later validated in successful clinical trials – Figure 2. This worldwide implementation programme could be viewed as a pioneering global implementation study. Although no formal evaluation has been conducted on its impact on medical culture, practice, and healthcare delivery, the WHO ladder remains a key reference point in medical education and specialty courses. It is discussed, taught, and critiqued in medical schools, serves as a foundational concept for practice guidelines and continues to be refined. ^[8]

Shortly after its launch in 1982, Jan Stjernswärd, head of the WHO cancer unit, emphasised that the availability of palliative care and continuity of care were essential for effective pain relief. In the same document, the perspective shifted from viewing palliative care solely as end-of-life care to recognizing it as an approach to be integrated throughout the entire cancer journey, as illustrated in Figure 3.

Concurrently with the development and establishment of the WHO Analgesic Ladder in the early 1980s, the founding of the first hospices and palliative care units in Europe marked a significant milestone in the institutionalisation of palliative care and recognition of the importance of holistic care for patients with advanced cancer. Exchange visits between the newly emerging programmes in the U.K. and the U.S., and among those in other parts of the world such as Canada, Australia, Italy and Spain ^[9] , crystallised common approaches, including multi-professional care and a more aggressive approach to assessing, diagnosing, predicting and treating suffering of patients and families. Palliative Medicine emerged as a specialised field dedicated to addressing the physical, psychosocial, and spiritual needs of individuals with life-limiting illnesses, including, but not limited to, cancer.

Palliative care research, although early advocated in the vision of Cicely Saunders, lagged behind during the rapid development of clinical services. In 1987 the first European Congress of Palliative Care was held in Milan. At the next congress, also in Milan, the European Association for Palliative Care (EAPC) was established as a European forum of clinicians and researchers with the contribution of the Floriani Foundation. The EAPC established a Research Network in 1996, that was chaired by Franco De Conno ^[10] .

Four years later, in 2000, the first EAPC Research congress was arranged. Symptom research had the top priority to begin with, supplemented with initial studies in other prevalent symptoms such as fatigue, pain, dyspnoea, and cachexia. However, even today RCTs on symptom control in advanced cancer are sparse and the collaborative studies between oncology and palliative care supported by scientific associations seldom occur. ^[11]

Therefore, many symptoms are still left unrecognised, undertreated and poorly researched. ^{[11] [12] [13]}

Over time, palliative care policies in European countries evolved from being on the periphery of healthcare to becoming integral components of oncology practice. This transformation was driven by a growing recognition of the importance of addressing the multifaceted needs of patients with serious illnesses. EAPC and national palliative care associations played a crucial role in this evolution, advocating for policy reforms, raising awareness about the benefits of palliative care, and promoting interdisciplinary collaboration. This facilitated the sharing of best practices and research, contributing to the development of standardised care protocols and educational programs for healthcare professionals. ^[14]

Integration of palliative care into oncology

Pioneering work by European clinicians and researchers has advocated palliative care as an integral component of cancer care, leading to the development of palliative care services and the integration of palliative care principles into oncology practice across Europe. Palliative medicine in the context of oncology seeks to achieve interdisciplinary collaboration, patient-centred care, and the prioritisation of comfort and dignity for those with cancer. Despite progress, the implementation of palliative care in routine oncology practice remains variable, with local, national, and international differences requiring continued emphasis on education, research, and cultural shifts.

Since the publication of the WHO public health model promoting the implementation of a palliative care approach at the macro (inter/national), meso (institutional), and micro (clinical, caregiver, primary) levels, there has been a remarkable expansion in access to palliative care across European countries, despite national disparities. ^[15]

To move this forward we need to adopt the principle: “the question is how palliative care should be integrated into oncology, not when.” ^[16]

While many European hospitals have established palliative care units in one form or another that are prerequisites for funding and accreditation, it must be asked if simply these units proves integration between the patient-centred aspects of care, i.e., patients’ needs and preferences and the anti-cancer treatment, or if the care is still organised in silos. ^[11]

Everyone working in oncology might claim that their treatment and care are patient-centred, but this is unlikely to be uniformly the case.

The role of the pharmaceutical industry in the development of anticancer drugs that has led to vastly improved cure rates, longer survival, and better symptom control and quality of life (QoL) is indisputable. Whilst these are welcomed, new challenges are posed in the collaboration between oncology and palliative care. These should underline that the close integration of services and multidisciplinary skills is even more necessary nowadays. Particularly to face the degree of uncertainty belonging to experimental options of clinical trials and routine clinical decision-making in face of patients‘ trajectories that can change from decline to improvement and stability or vice versa enter an end-of life pathway; all within a short space of time. ^{[17] [18]}

Currently, integration of palliative care and oncology care remains aspirational. To change this and be synchronous with the progressive and dynamic oncology ecosystem, palliative care and oncology need to adapt to reduce the abyss between tumour-centred and patient-centred care. As it is currently, palliative care may be seen as being negative and this has consequences for recruitment of competent staff at all care levels, academic activities, and resource allocation. These represent real obstacles for palliative care integration into mainstream oncology. However, just as palliative care has evolved from a concept, from just end of life care, from a niche practice to a defined specialty, the barriers to full integration in oncology could and should be overcome through various initiatives including the patient driven digital care pathways currently being developed.

Education and research in palliative cancer care

By simply leafing through the various reference textbooks of palliative medicine, one gets an insight into the great variety of themes with which specialists should be familiar with, both in theory and clinical practice, and which should be subjected to research. These themes include pain and symptom management, pharmacology of opioids and other essential drugs, psychosocial issues, ethical issues, communication, teamwork, organisational issues of care delivery, end-of-life care, normative and legal issues, oncology, non-malignant diseases, collaboration with other medical specialties and community palliative care, culture, language and religion, grief and bereavement, and family. As a result, in the hospital setting, multidisciplinary teams consist of various providers, including specialised palliative care physicians, nurses, social workers, spiritual care providers, occupational and physical therapists, and pharmacists, among others. In 1995, a pioneering palliative care programme developed by Neil MacDonald and Eduardo Bruera including education and research initiatives was reported from Edmonton, Canada, which consisted of a hospital-based inpatient palliative care unit as well as a consultation service and an outpatient clinic integrating with family physicians to enhance primary palliative care provision ^[19] . Over the past decades, several studies and models of treatment and care have addressed how the focus of palliative care can be shifted from exclusively end-of-life to early integration within the cancer care trajectory ^[20] .

Education

Currently the need for basic and specialist competence in palliative care is unmet at all levels of health care, which calls for increased educational efforts. ^[21]

Physicians specialising in palliative care must be properly trained in managing complex symptoms and challenges throughout the disease trajectory, including during bereavement. Additionally, the expertise of these specialists is crucial for educating and enhancing the skills of primary palliative care providers. ^[22]

Palliative care education should be integrated across all levels of care, from primary to tertiary, by specialised palliative medicine teams. In a historical perspective, palliative medicine obtained specialty or subspecialty status in the UK in 1987, the USA in 2006, and Canada in 2016. Palliative care is now recognized as a medical specialty or subspecialty depending on the postgraduate educational system across more than 20 European countries as well as the USA, Canada, and Australia. Palliative medicine has also been established as a specialty in multiple countries in the Asia-Pacific region, including Australia, New Zealand, China, Japan, Taiwan, Malaysia, Singapore, and India. World-wide, other countries are actively working toward accreditation.

Focusing on medical education, the principles and content of this should be tailored to educate other healthcare providers who are integral members of the palliative care team.(11) Palliative medicine may still be one of the fastest growing medical specialties worldwide, which involves challenges with regard to limited numbers of academics in research and education at universities leading to insufficient numbers of health-care providers with adequate competences and practical skills. Education programs are generally highly heterogeneous at all levels of health care, which may constitute a substantial barrier for further integration of oncology and palliative care.

A significant milestone in the professional education of palliative medicine as an evidence-based discipline was Oxford University Press series of textbooks of Palliative Medicine. First published in 1993 by Derek Doyle, Geoffrey Hanks, and Neil MacDonald, this initiative was led by Geoffrey Hanks, the first palliative medicine chair in Europe at Guy’s and St Thomas’ hospitals, University of London. He consistently underscored that evidence-based palliative medicine complements, rather than contrasts, compassionate care. The 6th edition, published in 2021, offers a global perspective on palliative care, drawing insights from over 200 experts. ^[23]

Research

Many symptoms, such as fatigue, pain, dyspnoea, and cachexia are highly prevalent throughout the cancer disease trajectory. The adoption of regular screening and monitoring of patient-reported outcomes (PROMs) is still erratic. Several randomised controlled trials have provided evidence that the integration of patient-centred care in standard oncology care results in better patient and caregiver outcomes. However, these findings have not translated into clinical routine and many symptoms are still left untreated.(11-13) Today, electronic patient-centred care pathways are explored in large research projects comprising the entire treatment and care trajectory using implementation research methodologies (MyPath)^[24]. As cancer treatment evolves rapidly, new therapies, such as targeted immune therapies, have dramatically modified the risk-benefit ratio, adding another layer of complexity to symptom management. Place of care and death, access to palliative care, circumstances of dying, and end-of-life decisions are strongly related to the health-care system, legal context, and types and models of palliative care available within a country. Therefore, implementation research seems to be instrumental regarding integration of palliative care and oncology. To increase the amount of evidence concerning implementation of early palliative care in oncology more research is warranted but funding opportunities are needed to train more palliative care clinicians at all levels in research. However, research in this area is underfunded compared with funding of studies into the prevention and cure. Less than 1% spent on cancer research is allocated to palliative care. ^[25]

The future of palliative care

Palliative care is at a crossroads. It can continue down the traditional path of end-of-life care (predominantly in cancer) or expand to embrace the evolving healthcare ecosystem in cancer and non-malignant disease. While end-of-life care is, and should remain, a cornerstone of palliative care, the specialty must also adapt. Our primary stakeholder, patients with cancer, are experiencing a revolution with advances in immunotherapy, biological therapy, precision oncology, cancer vaccines, and stereotactic ablative radiotherapy, leading to increased survival rates. ^[18]

Even those with incurable cancers are living for years, necessitating palliative care that is adaptable to meet the needs of this population and be inclusive of long-term management. Terms such as “metastatic cancer survivorship” and “late effects” would have been unfamiliar even ten years ago, but these terms are now part of our vocabulary.
The hard truth is that the traditional palliative care approach no longer fully serves the needs of the cancer population. The world around palliative care has changed. Palliative care, still rooted in end-of-life care, does not have the resource, training or skill mix to manage the tidal wave of people who are now going to be living with their cancer for many years as a chronic condition or a cured condition with residual treatment-related symptoms.

Palliative care developed in response to a pre-existing clinical need, initially prompted by a paradigm shift in how we manage terminal illness. The need for what is becoming known as “supportive care” (or more recently “supportive oncology”) – which encompasses the entire cancer spectrum - has developed in response to a changing patient demographic and rise in people living for years with incurable cancer. ^[26]

Optimal supportive oncology requires input from a broad range of medical and non-medical specialties working in an integrated way across the whole cancer pathway. Palliative care, with some adaptations, has a part in this, but can no longer be regarded as the sole provider. Alongside this, the research base to help guide our clinical practice in these groups is distinctly lacking. For instance, managing pain at the end of life differs significantly from managing pain in individuals living with the disease for many years or in those who have survived it. How we manage sickness at the end of life is very different from how we prevent/manage sickness induced by chemotherapy. ^[1]

To remain relevant in oncology, palliative care must develop the research- and skill-base to manage emerging problems associated with the disease and novel treatments. To achieve this, integration with oncology is essential, should start early and be dynamic, with palliative care input varying throughout the cancer journey. Palliative care needs to be bespoke, recognising that needs differ among individuals, cancer types, and treatments. The last 30 years have seen advancements in symptom science research, yet there is a gap with research not being adequately integrated into clinical practice. This must change, as neglecting to implement these evidence-based practices goes against the principles of medical research.

The relative lack of academic healthcare professionals in palliative care contributes to this gap. To align with other medical specialties, we must transition to a field where academia is a core component of palliative care, driven by academic professionals leading healthcare improvements. We are on the cusp of a significant opportunity to build on the strong foundations of palliative care and prepare it for the future. Expanding our target population, supporting sequalae of long-term cancer and cancer treatment, and reaching out to non-cancer populations is paramount. To succeed, we must build academic capacity and implement research into practice as central pillars to allow palliative care to reach all who could benefit from it. This is an urgent call to action that must be seized.

Conclusions

Palliative care has come a long way since its humble beginnings in the hospice movement. The pillars of pain management, psychosocial support, and spiritual care served to revolutionise end-of-life care evolving palliative care into a specialised field and a medical specialty in over 20 European countries and beyond. Despite progress, there is still much work to be done to overcome the barriers to integrate with oncology, improve education and research, and adapt to the changing healthcare landscape and address the complex needs of patients and families. Moving forward we need to reflect on the principles of patient-centred care, at the genesis of palliative care, and reinforce these throughout all aspects of the cancer journey. The principles remain steadfast, but the challenge is implementing these in the fast-paced, complex, and multifaceted healthcare terrain. As we look ahead, collaboration, innovation, and advocacy will be essential in ensuring equitable access to high-quality palliative care for all cancer patients. In European Oncology, the vision for palliative care remains robust, but the reality requires ongoing refinement and effort.

Figure 1 - Timeline of Modern Palliative Care

Figure 2 - The World Health Organization Analgesic Ladder for Cancer Pain Relief ^[7]

Figure 3 - Traditional Palliative Care versus Early Palliative Care ^[27]