1.4 Policy in palliative care

Hospice and palliative care services have developed in very different ways around the world due to local experts (and their networks of colleagues), differing health and social systems, differing sources of funding, and different perceptions of needs by the communities served by these services. In the 1950s, 1960s, and 1970s much of the developmental stage of hospice and palliative care around the world was as a counterculture, explicitly outside the normal health system policy and planning processes (Clark, 2000). It is doubtful that any country in the world has commenced hospice or palliative care services in response to well-formed national policies with an adequately funded planning and development phase. Instead, most settings have built hospice/palliative care on the momentum of visionary clinicians and funders who have responded to perceived needs from health-care providers, patients, families, and the communities in which they live. This background is important, because it places in context the work that is being done at pan-national, national, and sub-national levels to create effective policies that can further the key work of hospice/palliative care long after services have commenced and, often, after a large number of apparently unconnected local services have been well established.

National policy initiatives reflect the breadth of service provision, the diversity of service delivery models (in response to local funding and broader health service provision models in health and social services), and the basic philosophies about life, death, and care in the communities in which the services have been built. In some specific cases, policy generation (and any accompanying legislation or regulation) may also reflect specific political imperatives at particular time points in a jurisdictional environment.

A fundamental aim of good government is to develop and implement policy that optimizes the well-being of its citizens. Given the universal nature of death, and the increasing prevalence of ‘expected’ death from chronic, progressive conditions, it should be expected that there are policies and even legislation that ensure good care is given to people at the end of life. Such policy must be informed by the best possible data, and seek to understand explicitly the needs of people at the end of life and their caregivers in order to generate the best possible frameworks for care delivery and support.

Policy in health and social services reflects the complex political processes that underpin priorities and the subsequent responses that may or may not include budgetary allocation and changes to legislation, regulations, or both. In most settings around the world, formulation of health policy is variously shared between politicians, professional organizations (such as medical and nursing societies), patient organizations, public servants, and the general society. In some cases, policy is driven by a political imperative and at other times by public servants or other bodies presenting key issues to their government, with proposals to prioritize a particular issue and on how best to prosecute the issue in public policy. In most settings, this makes for a dynamic process of tacit or overt negotiation between the political and operational arms of government.

Any policy is a series of compromises: there are always competing interests that will help shape the final results. The factors that influence policy are not always explicit and may relate, at times, to policy initiatives that are seemingly unrelated. Tracing such processes is almost impossible. Changes in health-care policy will often take time, and consistent work is often needed to generate and sustain any change in direction.

At times, there may also be differences in the approach between various levels of government and public administration within the same country. This may lead to differences in policies and documents that may be difficult to reconcile. Vested interests abound in bringing together the wide variety of opinions that help to inform any societal policy, given the increasing plurality seen in many communities around the world.

Policy that relates to health service delivery will have significant pressure exerted on it, depending on the funding models that are used to pay for health care. Private practitioners operating on a fee-for-service basis may bring very different pressures to negotiations than a health system where payment is primarily through capitation. Financial gains and losses are powerful factors in influencing policy and hence referral from one clinical service to another.

There are particular challenges in forming public policy on hospice/palliative care, and especially the end-of-life component. In so many ways, such conversations go to the very heart of existential beliefs and how these beliefs are manifest in the day-to-day lives of individuals and of whole communities. How individuals and groups within communities view death will have influence on the policies that are put in place for hospice/palliative care.

Accommodating widely varying and, at times, diametrically opposed views is a key challenge in the development of any relevant public policy that will actually have meaning in helping to shape the care provided in such communities. The spectrum of beliefs is wide: at one extreme there may be a belief that any life is sacred in and of itself, even in a vegetative state; the other extreme is that life can only be enjoyed if there is little or no compromise to physical and psychological well-being. The number of variations along this spectrum makes any public policy in this area incredibly difficult to generate in a way that all people are satisfied. First and foremost, good public policy is about ensuring that the well-being of all people, including the weak and voiceless, is respected and protected. This often does not, in itself, deliver policy that will necessarily please every lobby group, but it is a crucial tenet around which to build strong public policy. Depending upon the society, the basic values held by the community, the economic strength of that community, and the health-care system in which hospice/palliative care services are being built are among other intrinsic factors which influence priorities between treatments: cure, life prolongation, or relief of symptoms at the end-of-life care. Such priorities may be challenging for developing good end-of-life care. For example, in many health systems, the drivers to invest in marginal life prolongations seem to be many with economic, marketing, and professional pressures all influencing the ultimate policy decision.

The voice of the community in democratic societies helps to inform health policies including end-of-life care. A key challenge in hospice/palliative care is the lack of an effective patient voice. People at the end of life can rarely find the sustained voice needed to truly influence public policy. Caregivers for people at the end of life are working tirelessly to provide care for the person with the life-limiting illness. After the care recipient dies, many caregivers are unable to devote significant time and energy to advocacy. Often this leaves professional bodies in the role of social advocates, with the inherent concern that there may be an element of self-interest in the requests being made by health professionals, seemingly on behalf of their patients.

The almost absent voice of consumers in service development means that in the public discourse of policy development, it is easy to drown out key views and values that are important to people with life-limiting illnesses and their caregivers. Simply asking the well population what they would like at the end of life is unlikely to be sufficient, and may lead to policy that is not congruent with the wishes of people actually facing an advanced, progressive, life-limiting illness. By definition, such a lack of advocacy is likely to continue to be there, and finding ways of respectfully but adequately consulting people at the end of life about such policy remains an ongoing challenge.

Several key initiatives are underway around the world to improve the quality of care and to provide stronger data to inform policy. Initiatives across the globe are each seeking to have a stronger framework to reflect the feedback of the actual experience of patients and caregivers (Barbera et al., 2010; Bausewein et al., 2010; Eagar et al., 2010; Payne and the EAPC Task Force on Family Carers, 2010a, 2010b; Kamal et al., 2011; Casarett et al., 2012; Centeno et al., 2013).

Evidence-based public policy is as important as evidence-based clinical practice, and where sufficient evidence is not available, it is imperative that adequate research is done to understand the net effects (benefits and harms) not just with highly motivated clinicians who are willing to participate in such studies, but in ‘greenfield’ hospice/palliative care sites that are not particularly invested in the process. Further, after implementation, sufficient resources need to be invested in the ongoing evaluation of the training required, the uptake, and the outcomes using prospectively collected data with specific questions about the performance of the programme as well as seeking signals of any untoward or unintended consequences, as part of a learning health-care system (Basch and Abernethy, 2011).

Ideally good public policy is informed by the best available evidence, not simply political expediency (Loman, 2000; Alliance for Health Policy and Systems Research, 2007; Head, 2007; Banks, 2009; Brownson et al., 2009; Gluckman, 2011) A formal structure applied in several areas of medicine may also be applied in palliative care (Table 1.4.1). Step II and step III should ideally be endorsed by national or regional health-care authorities in order to assure the allocation of sufficient resources to implement the pathways and evaluate the pathways’ impacts on health outcomes. This assessment must include the effectiveness of introducing these measures, levels of adherence to the pathways, and reasons for non-adherence or poor uptake. Ideally the effect/outcomes on patient care before and after the introduction of a pathway should be prospectively assessed. This assessment can be conducted at patient level but also through pre-defined quality indicators at institutional, regional, and/or national level.

For example, the wide uptake into health policy of the Liverpool Care Pathway (LCP) with all of its strengths and weaknesses deserves careful exploration (Currow and Abernethy, 2014). What was the level of evidence that was available to policymakers as they mandated uptake of the LCP across the health system in the United Kingdom? It could be argued that there was no level II or level I evidence, and the generalizability from the studies which had been reported by the time of the initial decision to mandate widespread uptake were not sufficient to ensure that the net effects of the LCP were known (Costantini et al., 2014). The UK government has subsequently taken the step not to recommend the use of the LCP in the United Kingdom at this time. This decision itself has sparked debate (The Lancet Oncology, 2013).

Policy documents reveal the wide range of responsibilities and mandates of health and social services around the world. This section presents an overview of a sample of international and national policy documents that relate to hospice/palliative care. The list is not exhaustive, but serves to illustrate the issues frequently seen in health policy relating to end-of-life care.

The WHO most recently published its ‘Knowledge into Action: WHO Guide for Effective Programmes’ modules in which palliative care sits under ‘Cancer Control’ (WHO, 2007). The overarching aim of the document is to ‘reduce unnecessary suffering of patients and their families’. In this, palliative care is embedded as one key aspect of cancer control although the palliative care aspects of the document are not limited to people with the diagnosis of cancer. The palliative care module contains three steps for planning strategically to improve hospice/palliative care:

In policy terms, the WHO document frames hospice/palliative care in the context of the humanitarian needs that must be met. Internationally, this then defines the greatest needs as those of low- and medium-resource level countries where the highest proportion of patients present with advanced disease, and hence where little can be done to modify the course of the life-limiting illness. Emphasis is placed on the integration of hospice/palliative care into the existing health system whether in the public or private sector, rather than creating a parallel system of care, with an understandable focus on community and home-based care. Explicitly, the document outlines the need to adapt these three principles in ways that respect the cultural, social, and economic settings in which the care is being delivered. The document also reflects the need to cover all age groups including children. Interestingly, one key message from the document is that palliation should be linked to other aspects of the continuum of cancer control: prevention, early detection, and treatment services. The WHO document also clearly states that hospice/palliative care services should be able to work alongside therapies that may improve prognosis, such as chemotherapy or radiotherapy in the case of cancer.

Adopting a public health approach to palliative care was the framework deliberately chosen by the WHO as far back as 1996 (Stjernswärd et al., 1996). The three key elements outlined in a public health approach were:

These key elements are based on work defining the greatest perceived needs of people at the end of life from work done by the WHO: pain relief, accessible and affordable medications, and financial support. The WHO guide also outlines the aspirational goal of having 80% of all people who die from cancer seen by a palliative care service (and 60–80% of people dying from AIDS). Of note, the WHO guide includes an outline of the need for adequate information systems to complement physical, human, and financial resources for a comprehensive programme. The need for protocols, guidelines, and standards are also integral to successful programmes.

Accompanying the principles just outlined, the WHO guide provides a step-by-step process of planning, implementing, and evaluating a hospice/palliative care programme at a national level. This guidance encourages national policies explicitly to take into account the financial, cultural, and ethical context in which the programme is going to exist.

The WHO has in place an important framework that can influence policy at national and sub-national levels but there is no direct effector arm. The care of people at the end of life and the way that care is delivered through policy, associated funding models, and the other resources made available are beyond the jurisdiction of the WHO/United Nations. Although the WHO guide is a seminal document, it has no direct mandate in jurisdictions that choose to ignore it.

The following subsections do not exhaustively outline every national policy document that has been published, but seek instead to reflect on aspects of several national policy documents or legislation in order to highlight key aspects that illustrate the breadth and complexity of public policy in any setting.

Most have themes that fit broadly with the year 2000 Australian National Palliative Care Strategy: A National Framework for Palliative Care Service Development which include:

By way of integration of policy, these principles are then reflected in other key national strategy documents: the National Chronic Disease Strategy; the National Service Improvement Framework for Cancer; and the National Service Improvement Framework for Heart, Stroke and Vascular Disease (Dowrick, 2006).

Internationally, a watershed moment was in the early 1980s when the United States passed legislation to include an explicit payment provision for hospice care in the 1982 Tax Equity and Fiscal Responsibility Act. This allowed for a per diem payment for people who had limited prognosis and were eligible for Medicare payments. An act by any legislature is the mechanism that enshrines policy in the most overt way. As this Act had a sunset clause of 1986, the Congress replaced it permanently with a Medicare Hospice Benefit that year (Miller and Mike, 1995). This was a world-first legislation in recognizing the needs of people at the end of life and the care they required.

There were arguably two effects from this landmark legislation by the United States: it enshrined hospice/palliative care in law which was a positive outcome; but because it was a legislated per diem payment that was limited to the last 6 months of life, it may have limited referral to hospice services to later in the disease trajectory than intended (Christakis and Iwashyna, 2003). The legislation did not index the payment, thereby also potentially subsequently limiting the care that could be purchased in later years.

The development of palliative care in Norway, as in many other countries has an evolutionary pattern. It started from the late 1970s with the establishment of informal palliative care groups in most health regions in the country. The primary goal of these groups was to inform, promote, and teach about palliative care at a local level. The needs were seen from the patients’ and health-care pioneers’ points of view. This first phase can be categorized as an ‘information and policymaking phase’. Key politicians locally and nationally were approached with the aim to build a more formal platform for palliative care.

This process culminated in a national governmental report on care for dying patients in 1984 (Official Norwegian Reports, 1984). This report recommended establishing institutional sites. The governmental report from 1984 was used actively by the health-care providers in the field of palliative care to promote the need for establishing the combined academic and clinical units. It took almost 10 years (1993) to establish the first academic palliative care unit in Trondheim. It was established within the Department of Oncology at the Trondheim University Hospital with a full-time professor. Simultaneously, patient care was established in the Oslo region and in Bergen. In this process a non-governmental organization (NGO)—the Norwegian Cancer Society—was involved and, through a major grant to the Trondheim University Hospital, the professorial chair was funded for 5 years with an agreement that the university (the public health-care system) should continue to pay for this position after this time. The Norwegian Cancer Society also paid for the establishment of an inpatient unit at the Trondheim University Hospital at the same time.

This is an example of the use of a government report, involvement by an NGO and consistent policy work by health-care providers succeeding in developing palliative care in the country. Such an investment provided impetus for a second national government report in the form of a national cancer plan (Official Norwegian Reports, 1997) which included recommendations on the future development of palliative care and a report on care for the dying which was released in 1999 (Official Norwegian Reports, 1999).

Public health-care in Norway is fully paid for by the government. The financial system is based upon a basic payment of approximately 50% and a diagnosed-related group (DRG) by the remaining 50%. In order to further develop palliative care, a special DRG was established to make it economically feasible for health-care institutions to establish palliative care teams in hospitals and also community outreach teams. The DRG was followed by national standards on how to organize palliative care in teaching and local hospitals, as well as in community care. This combination of an official national policy on how to organize palliative care matched by DRG-based funding mechanisms had a catalytic effect on the development of clinical palliative care across Norway.

In Germany, palliative care has developed rapidly since the establishment of the first palliative care unit in 1983 and the first inpatient hospice in 1986, using a two-pronged approach. Palliative care pioneers worked within the health-care system, while hospice care was established as a community-based citizens’ movement, with a major focus on volunteers. Despite some conflicts between these two tiers (e.g. warning against a medicalization of palliative care), both approaches now collaborate and have succeeded in integrating palliative and hospice care in the health-care system. This is evident not only from the large and still increasing number of specialist inpatient and outpatient services (195 inpatient hospices and 231 palliative care units in hospitals in 2011, 1500 home care services with volunteers), but also from the establishment of academic palliative care departments across the country (Aachen, Bonn, Cologne, Erlangen, Freiburg, Göttingen, Mainz, München, and Münster).

Recently, medical education in palliative medicine has been incorporated as an integral part of medical studies at German universities. As part of national policy, starting in 2014, physicians applying for a licence to practise medicine will have to provide a certificate of basic training in palliative medicine—a world first. A challenge in upcoming years will be establishing and enhancing comprehensive, standardized, and quality-controlled education within universities.

Only minimal requirements are legislatively specified for education of nurses in palliative care. However, standardized and quality-controlled advanced training courses are available. This training is more frequently being requested as a prerequisite for nurses working in palliative care.

Changes in the legislation have influenced the situation for home care enormously in the last 5 years, also making it more complex. With the Law for the Consolidation of the Competition in Compulsory Health Insurance (Gesetz zur Stärkung des Wettbewerbs in der gesetzlichen Krankenversicherung), a legal claim for palliative home care has been implemented in the fifth book of the social law in 2007. The ambitious goal of full coverage with comprehensive palliative home care has still not been achieved in most locations. However, after initial negotiation difficulties between palliative care providers and health insurance funds, an increasing number of contracts have been signed. As a consequence, more than 100 palliative care teams have begun work in the field of specialized palliative home care. Legal regulations for the supply of opioids and other medications for the treatment of patients at home have been adapted recently, thus, facilitating faster and more comprehensive medical treatment in emergency situations. Volunteer hospice services receive reimbursements for payment of the coordinators from the sickness funds. Overall, the legislation has been adapted significantly, contributing to improvements for patients requiring palliative care.

Even though hospice and palliative care is gaining increasing acknowledgement from political stakeholders, a national strategy on palliative and hospice care is still lacking. The German Association for Palliative Care in collaboration with the German Hospice Association and the German Medical Association has produced the ‘Charter for the Care of Severely Ill and Dying Patients in Germany’ as the German contribution to the Budapest Commitments, and is currently using this charter as the basis for the development of a national strategy. A research agenda for palliative care has also been commissioned by the Leopoldina German Academy of Science and will be published in 2014.

Canada continues to be a leader in hospice/palliative care, in part because of a strong policy framework that has underpinned the development of services and the environment within which those services operate. Canada has not only set up a national strategy on palliative and end-of-life care, but has also publically evaluated it in a way that allows others to learn from it (Anonymous, 2007). In the life of that strategy, five working groups were established and each took forward a work programme which was coordinated with the other groups. They were:

These groups cover the full spectrum of hospice/palliative care public policy. Of particular note, the last group was charged with the role of developing a system for collecting and utilizing information about palliative and end-of-life care. The two key foci were who used services and how the quality of those services could be systematically measured. A whole-of-government approach utilizing existing organizations charged with understanding the measurement and reporting of the health system were engaged in the process. A key outcome of such far-reaching policy work was an inventory of performance measures in palliative and end-of-life care. The outputs also included a standard dataset to be collected on palliative care patients across participating services, complementing the work done by the Best practices and quality care working group.

The importance of a public awareness arm of any policy should not be overlooked. The programme of this working group encompassed the processes of both understanding what Canadians knew and thought about palliative and end-of-life care and, from that, what key messages needed to be more widely understood. This group also took explicit responsibility for the informational needs for family and friends as caregivers.

New Zealand published a review of its government’s policies regarding palliative and end-of-life care (Anonymous, 2010). It highlights many of the fundamental challenges of any policy: how was it implemented and how have outcomes been measured? Although there are no issues that are unique to any one jurisdiction, the challenges faced by New Zealand bring into sharp focus the issues of the social determinants of health and the impact that socioeconomic status still manifests at the end of life (Currow, 2009). In public policy, such recognition is crucial as, reproducibly across the globe, people from rural areas, the socioeconomically disadvantaged, people from first nations, and those whose birth place was not their country of residence, especially if the language is different, have poorer health outcomes, even at the end of life. Principles espoused in the policy include universal access to hospice/palliative care services irrespective of diagnosis and geography. Importantly, documents from New Zealand also do not limit access by prognosis.

The document highlights that, despite substantial investments by governments, measures have not been agreed universally for the evaluation of the impact of hospice/palliative care services. As such, data to evaluate the impact of a national approach are not available and become a key priority for the next iteration of a national approach to improving access and uptake of hospice/palliative care by moving towards ‘an outcomes focused monitoring and evaluation framework’. The stated aim of ‘a systematic and informed approach to the provision and funding of palliative care services’ is challenging to achieve without measures being routinely collected and analysed. Without a specific investment in measuring performance, it will continue to be difficult to understand fully the benefits of the national policy.

The first national strategy was put in place in 2001 in New Zealand (Anonymous, 2001). A long-term commitment by funders and policymakers is required if the benefits of a more systematic approach to the availability and uptake of hospice/palliative care is going to be taken. Such a lead time should ideally see greater uptake into policy documents in areas that interface with hospice/palliative care and, arguably, is a key measure for the evaluation of the success of policy at the level of policymakers.

In Romania, hospice/palliative care services are potentially in a position not encountered in some more resource-advantaged countries—the ability to build hospice/palliative care services strategically as an integral part of a rapidly evolving health system. Such services are a mixture of public, charitable, and for-profit services arising where key opinion leaders and communities have sought and developed local solutions. Payment models include per diem payments for inpatients and fee-for-service for community-based care.

The national strategy is refreshingly honest—each service develops relationship with referring services according to the local service’s own strategy (Mosoiu, 2009). Although this happens right around the world, few policy documents reflect the status quo with such accuracy. Given resource constraints, the national strategy has limited itself to people ‘whose disease is not responsive to curative treatment’ (WHO, 1990) thus temporarily rejecting the broader definition adopted by the international agency in 2002 which included a broader timeframe across the disease trajectory. The timeframe for review of this Romania stance is set for 2020.

The principles around which the Romanian National Strategy document has been built have universal application:

The implementation of such principles in any national or state/provincial setting is likely to lead to significantly improved services.

The document also candidly addresses the challenge of the interface between specialist and generalist services as more health professional devote themselves full time to palliative care practice. This leads to the challenges in continuity of care especially at times of transition between physical locations of care. In any health system this creates difficulties, but at the end of life such fractured service delivery is arguably even more counter-productive. Given the small number of services for a large population, the other challenge is to ensure that additional services are created in geographic areas where currently there is no coverage.

Kerala, in India’s south west, is a populous state with excellent levels of education and infrastructure. Its palliative care services are examples of what can be achieved with high levels of commitment to local service delivery that is relevant, affordable, and patient centred. The programme of work, underpinned by a strong policy document, delivers a level of support that few would have thought possible three decades ago (Anonymous, 2008). The programme seeks to embrace both those who are dying and those with chronic conditions that would benefit from a palliative approach. Such population coverage requires the programme to be predominantly delivered by primary care. As such, palliative care was accorded ‘priority status in public health and disease control programmes’. This enshrines the need to grow palliative care as an integral part of the health system and, unlike many countries with greater resources where palliative care will only be funded when everything else has been developed, it allows genuine integration of palliative care right across the spectrum of health service provision.

Ultimately the policies in Kerala set out a clear manifesto—good palliative care is everybody’s business—from the most junior and least skilled health worker to the most highly trained specialist in any field of clinical endeavour. Care must be based around a person’s home with their family and community providing care, supported by health professionals that are also locally based.

The policy also draws strongly on trained volunteers to achieve the immediate, medium-, and long-term aims of improving the well-being of people in the state by systematically decreasing suffering. Volunteers may not be paid, but their training and ongoing supervision requires explicit resources.

In policy, good palliative care delivery in the community also relies heavily on cross-sectoral support and cooperation. This requires governments, health services, professionals and their associated professional bodies, and community organizations to work closely together for a common goal. Each has a role not only in coordinating service delivery but also in building the capacity of the whole community, not just health professionals, to provide such care. This also requires close integration with other key policies in terms of cross-referencing and in prioritizing the available resources.

There was a community imperative to improve community-based care in Australia. One key aspect of this was the availability of key symptom control medications in the community. At a policy level, such a process had to be completed within current legislative and regulatory frameworks (Rowett et al., 2009). A true whole-of-government, whole-of-community working party was established in 2002 to address this issue in the context of a national policy commitment to improve end-of-life care systematically.

The work was underpinned by a national survey to define medications essential to good palliation, the level of evidence underpinning such processes, and the current (subsidized) availability of the medication (Good et al., 2006). The survey identified many medications, most of which did not have sufficient evidence to support registration nor subsidy (comparative cost-effectiveness) applications. For those medications that were considered essential and did have sufficient evidence, a new section of the national subsidized formulary was created for palliative care patients. (In policy terms, this was the first patient-defined section of the formulary. Until that time it had always been defined in terms of the medications that different practitioners could prescribe. The process has since been replicated in paediatrics and Aboriginal and Torres Strait Islander populations, demonstrating that good palliative care policy can positively influence policy in other parts of health.)

A work programme to improve systematically the evidence to inform prescribing has grown out of this work, with studies designed in consultation with regulatory and funding bodies to ensure the quality of the evidence will satisfy them if the studies are positive. Such national policy has collateral benefits around the world, given that phase III data are somewhat limited in their availability in hospice/palliative care. A national policy that community-based medications become more available has led to a number of benefits to patients including better evidence for how to use key medications in helping to relieve suffering in people with life-limiting illnesses.

Ultimately, successfully developing hospice/palliative care services requires every level of government, funders, and the community to develop and support policies that can ensure the widest reach of services, and the most equitable distribution of limited resources. This requires the development and maintenance of close ties with existing health and social policymakers and funders. Building on international, national, and sub-national initiatives is delivering improved access to hospice/palliative care services around the globe.