The need for more palliative care

by Piotr Mierzewski

In ageing European societies a 20% increase in the need for palliative care is to be expected, both for cancer and for non-cancer patients in the next ten to fifteen years. This poses great challenges, both quantitative and qualitative, for all European countries: it requires the development of coherent policies on palliative care, integrated into existing health care systems. It raises the important political question to what extent societies feel responsible for the quality of the last phase of their citizens’ lives.

The time is ripe

The modern history of palliative care began in 1967, when Dame Cicely Saunders founded St Christopher’s Hospice in London, a pioneer in this area. Since then palliative care has spread all over Europe, despite the challenges, which include scarce resources, poor availability of medical drugs and lack of understanding among the public and health professionals. The idea of palliative care may be new to many people, but it is perhaps one of the oldest medical specialities – the care of the vulnerable was a primary task of medieval hospices, when treatment was not available. The evidence base has grown and good practice models have been developed – the time has come to consolidate the best experience available in Europe.

European Health Committee (CDSP): bridging principles and practice

One of the goals of the Council of Europe is to assist member states to create a harmonious “ethical framework” for their health systems, promoting the same ethical and human rights principles across the entire continent.

The value framework and legal provisions have to be translated into practical policy developments. The CDSP, supported by a secretariat – the Health Division in Directorate General III (Social Cohesion) – undertakes this work.

The role of the CDSP is to prepare practical guidelines on health policy in the form of recommendations for adoption by the Committee of Ministers, the Council’s executive body. These recommendations are non-binding in a legal sense, but as a sign of consensus and political commitment they have the advantage of influencing health policies without subjecting implementation to precise conditions and time-limits. They are often used by professionals and non-governmental organisations as vehicles for advocating change.

For years the recommendations, within the health sector, dealt with different categories of vulnerable populations: prisoners, the elderly, the chronically ill and the socially excluded. People towards the end of their life are particularly vulnerable and in need of special protection. This recognition led to a recommendation on the organisation of palliative care, drafted by an expert committee after two years’ work, which was adopted by the Committee of Ministers in November 2003. The committee was chaired by Tony O’Brien who gave an overview of the issue in the first volume of this book. The work of the expert committee was supported by representatives from the WHO, the European Association of Palliative Care and the Palliative Care in Eastern Europe (EAPC) Project.

The selection of palliative care as an important topic was also inspired by Parliamentary Assembly Recommendation 1418 (1999) on the protection of the human rights and dignity of the terminally ill and the dying, by earlier Assembly texts (Resolution 613 (1976) and Recommendation 779 (1976)) and by the 1980 report of the CDSP on “Problems related to death: care for the dying”. These documents called for integrated support for patients and their families and comprehensive management of their suffering.

Holistic scope of the recommendation

The task of the committee was to prepare a recommendation on the basis of the current state of the art of palliative care in member countries, and in particular on:

– the legislative framework needed for the development of palliative care;

– the development of structures for the practice of palliative care in the widest sense and for the wide family circle;

– the reform of medical practice with regard to terminally ill persons, and particularly in cases of excessively prolonged treatment;

– innovative approaches such as palliative day care and home care;

– improving training for health professionals on their role in the proper use of palliative care.

One should remember that in Latin the word “patient” meant both a sufferer and somebody with a lot of patience. Nowadays, everybody becomes a patient one day. The journey of life is intertwined with a journey of care – from birth to death, we rely on health care institutions. For many, the final station of the journey of life is that of the journey of care: in palliative care institutions. The approach to palliative care should therefore be based on a global vision of therapeutic activity, not limited to symptom control but focusing on the continuity of care until death.

Past, present, and future challenges

Past challenges	Present challenges	Future challenges
· Establishing a service · Building a scientific foundation for palliative care · Integrating hospices into the mainstream health care system · Putting emphasis on cancer patients	· Building institutional infrastructure · Obtaining secure financing · Building a solid base of evidence with proven research findings · Teaching and training new professionals	· Extending care to patients nearing the end of life with non-malignant conditions · Promoting palliative care Europe-wide · Creating a positive image of palliative care

The integrated approach – Cure, care, communication, companionship and compassion brought together.

These five “C” words put in a nutshell the vocation of modern palliative care. Although it cannot add days to the patient’s life, it certainly adds life to the patient’s days.

The recommendation declares in the preamble that:

– palliative care is the active, total care of patients with advanced, progressive diseases, aiming at the control of pain and other symptoms, and offering psychological, social and spiritual support;

– the goal of palliative care is the achievement of the best possible quality of life for patients and their families;

– palliative care aims to help men, women and children with advanced, progressive diseases to enjoy the best possible quality of life until the end, and intends neither to hasten nor postpone death;

– palliative care affirms life and regards dying as a normal process, and is not guided by hopelessness or fatalism;

– all people near the end of life desire to be treated as valued persons by health care professionals and to have skilled attention directed at maintaining dignity and fostering independence, relieving symptoms and maximising comfort;

– palliative care, like all medical care, should be patient-oriented, guided by the needs of the patient, taking into account his or her values and preferences, and that dignity and autonomy are central issues for patients in need of palliative care;

– the differences in the availability and quality of palliative care throughout Europe need to be addressed through increased co-operation between countries;

– palliative care is an integral part of the health care system and an inalienable element of a citizen’s right to health care, and that therefore it is a responsibility of the government to guarantee that palliative care is available to all who need it;

The Committee of Ministers therefore recommends that the governments of member states adopt policies, legislative and other measures necessary for a coherent and comprehensive national policy framework for palliative care.

Core elements of a national policy framework for palliative care

Guiding principles

The well-known value framework of the Council of Europe helped to develop the principles underpinning the recommendation, many of which were mentioned previously as part of the preamble (integration, quality of life, patient-oriented). Other important ones are:

– incorporation into national health strategies;

– equity in access according to needs, without undue delay, in a setting which is consistent with patients’ needs and preferences;

– addressing physical, psychological and spiritual issues associated with advanced disease;

– the right to treatment of intervening problems if the patient so wishes, linked with the right to refuse it, while receiving the best palliative care, if the patient prefers;

– an adequate and equitable level of funding.

It is clear from the above that palliative care does not address a specific disease and spans the period from the diagnosis of advanced disease until the end of bereavement and is not identical with terminal care, but encompasses it. Palliative care affirms life and regards dying as a normal process. Patients’ death is not seen as a professional failure – professionals should recognise the limits of medicine and refrain from over treatment.

Relationship towards euthanasia

It important to note that euthanasia and physician-assisted suicide are not included in any definition of palliative care; for that reason, the recommendation does not take a stand on these issues. Palliative care intends neither to hasten nor postpone death. Palliative care interventions are not and should not be designed to end life prematurely. Equally, it is important that the technologies available in modern medical practice are not applied to prolonging life unnaturally. Doctors are not obliged to continue forms of treatment that are patently futile and excessively burdensome to the patient. Equally, patients are entitled to refuse medical treatment. In palliative care, the objective is to ensure that patients have the highest possible quality of life. At the point when the disease process is bringing that life to a natural end, patients must be able to receive every possible measure of physical, emotional and spiritual comfort.

Settings and services

The emphasis is on:

– the interdisciplinarity (a whole team’s responsibility) and multiprofessonality (hierarchy retained) approaches to palliative care;

– a wide range of resources, such as home care, in-patient care in specific or conventional units, day hospitals and out-patient clinics, emergency call-out, and respite care facilities;

– support for informal caregivers;

– availability of specialist palliative care for all patients when they need it, at any time and in any situation;

– availability of sufficient respite care facilities to offer temporary relief for caregivers.

By far the largest proportion of palliative care is given in the home and by non-specialist services. Specialised services are fully devoted to palliative care, whose teams are specially trained in this area of care. Such services do not take the place of care provided by front-line professionals, but support and complement such care according to the needs identified and the complexity of the situation. A rough estimate of the need of palliative care beds is 50-100 per million inhabitants.

Policy and organisation

Policy development should start with a needs assessment study, leading to palliative care strategies. Legal, social, economic, cultural, administrative and/or physical barriers in access to palliative care services should be identified

The availability of narcotic drugs is a specific concern since their availability is often insufficient owing to legal restrictions, both in terms of the variety of opioids available and different dose regimens. It is proposed that legislation should make opioids and other drugs accessible in a range of formulations and dosages for medical use. The fear of abuse should not hinder access to necessary and effective medication.

Special attention should be paid to palliative care for underprivileged groups and to cultural and ethnic differences related to the needs of patients. Equally importantly, special attention should be paid to palliative care for children.

Authorities are encouraged to publish a national annual report on the organisation and functioning of palliative care.

Quality improvement and research

In general, quality improvement in palliative care is no different from quality improvement in health care as described in Council of Europe Parliamentary Assembly Recommendation (97) 17. However, there are some specific dimensions of palliative care (the overriding importance of patient preferences, the family as the unit of care, the importance of spiritual and existential issues, and the involvement of non-professionals).

There is still a need to develop indicators of good palliative care and performance, and clinical practice guidelines developed with the participation of patients, leading to a coherent national monitoring strategy.

Recognising gaps in the base of evidence, the recommendation calls for collaborative research, both at national and at European level, and advises governments to establish an observatory to collect, process and disseminate reliable information on developments in and the quality of palliative care.

Education and training

Education of professionals and of the public is regarded as the key to the development of palliative care everywhere. In all countries there should be three levels of (continuing) education for professionals: basic, intermediary and advanced. Some countries recognise specialisation in palliative care.

The greatest emphasis should be on communication skills (breaking bad news), changing the unjustified negative images concerning opioids and devoting attention to spiritual and cultural aspects.

Special attention should be given to educating the general public, in order to change the negative, fatalistic image of palliative care.

The family

The family is defined in broad terms as those close to patients. It needs assistance and support in developing the ability to give emotional and practical support to patients, to adapt to the process, and to cope with grief and loss.

Communicating with patient and family

This is a cornerstone of palliative care. Openness, the exchange of information, mutual understanding, support and commitment, addressing difficult and sometimes painful issues and dealing with emotional distress, and a genuine wish to hear and understand the concerns of another are the guiding principles.

A special issue is the extent to which patients wish to be informed about their situation; in this regard, attention should be paid to cultural differences and the wishes of patients. Providing information at sufficiently wide intervals and giving patients and families the time to take in the bad news has proven to be essential.

Where there are no good answers, it is important to stay with the person and try to empathise with their sufferings.

Teams, teamwork and care planning

Palliative care by its very nature is an interdisciplinary and multiprofessional undertaking, which should be shared between the patient, the family and the team, whenever this is appropriate and would comply fully with the patients’ wishes.

Volunteers play a special role, not taking over the work of professionals, but bringing their own contribution and expertise. Governments are requested to facilitate the setting-up of volunteer services. To be credible partners, voluntary helpers must be trained, closely monitored and approved by an association. Training is essential and must be preceded by careful selection. Willingness to help is not enough. In an age when the subject of death is taboo, the presence of voluntary helpers alongside professional caregivers also has an important symbolic value. They “resocialise” death and show that it is not only a matter for health professionals, but also a problem for society as a whole.

Voluntary helpers form a team working under the responsibility of a co-ordinator, who serves as a link between the voluntary helpers and the carers, and between the hospital and the association.

The recommendation makes a distinction between interdisciplinary and multidisciplinary teams. Leadership of the interdisciplinary team is dependent on the task at hand, not on professional hierarchy, as is the case with multidisciplinary teams. It is required that at least the lead person in each professional group should be a trained and acknowledged specialist in palliative care.

A leading co-ordinator, preferably the primary physician, should guarantee the coherence of messages from different care providers. All communication between professionals concerning patients and families is subject to professional secrecy, fully respecting the patient’s right to medical secrecy and the families’ right to privacy.

Palliative care is usually very rewarding, but caring for the caregivers is needed to avoid a “burnout” syndrome.

Care planning and advance directives

Care planning and advance directives are not within the remit of the expert committee and are not tackled in the recommendation. However, being closely related to palliative care, they are discussed in the explanatory memorandum.

Even though the ethical assessment of decisions during the final period of a person’s life varies among physicians, there is a common view that professional caregivers need to be capable of open discussion with their patients.

Ethical dilemmas may notably occur when a patient persistently wishes to die, even if there are further palliative options available. Depending on the extent to which patients bring up the issue, physicians should be prepared to explain their views on physician-assisted death (assisted suicide and euthanasia).

Bereavement

The recommendation recognises that bereavement support is regarded as an essential part of palliative care programmes, a view not shared by all. The rationale is that bereavement usually starts before the actual demise of the patient, because the palliative phase of disease is essentially a period of increasing loss, both to the patient and the family. Moreover, the family (not necessarily consisting of blood relatives) is regarded as the “unit of care”. This makes it logical to continue, as far as necessary, the caring relationship with the family after the death of the patient.

Preparation for loss is already part of the grieving process. Bereavement support can therefore be provided before, during and after the loved one’s death.

[filet]

Cure, care, communication, companionship and compassion brought together

The Council of Europe’s recommendations are not binding but entail a moral obligation. Increasingly, equal access to palliative care is perceived as the moral obligation of societies and governments. An active and proactive approach to palliative care can bring about, if not a revolution, then at least a radical evolution in member states.

The recommendation, being addressed to 45 member states and 800 million people from Gibraltar to Vladivostok, cannot be a panacea. It can, however, become an agent of change, a vehicle for including palliative care in ongoing health care reforms.

It may be particularly useful for the countries which have neglected this issue; but even for the most advanced countries a review of “policies, legislative and other measures necessary for a coherent and comprehensive national policy framework for palliative care” might prove useful.

It goes without saying that palliative care services should first be in place before there can be a meaningful public debate about euthanasia. Where they are in operation, palliative care certainly decreases the demand for doctor-assisted suicide, but does not solve all the problems. There is need for an open public debate, even though the chances of reaching a consensus among all forty-five member states seem to be negligible.