Explanatory Memorandum - Recommendation Rec(2003)24

1. Since the beginnings of time, societies have attempted to offer support and comfort to their ill and dying. Commonly, a tremendous reverence and mystique surrounds the dying person. The period following the death is usually characterised by strict adherence to established protocols and ritual. The need to grieve the loss of a loved one is recognised by most societies, although the manifestations of grief and the formal period of mourning will vary from one culture to another.

2. Illness and death are now, and always will be an inevitable and integral part of the human experience. The manner in which we seek to identify and respond to the unique and individual needs of the dying and their families as they cope with progressive loss is a sensitive index of our maturity as a society. Whenever possible, we must prevent illness. When illness develops, we must try to eradicate it or at least retard its progression. In parallel with these efforts, we must offer all patients an optimal level of pain and symptom control, in conjunction with psychological, emotional and spiritual support.

3. The last 2-3 decades, care at the end of life has started to receive the attention it deserves. Specific scientific journals have been started, organisations for both professionals and non-professionals have been set up (such as the European Association for Palliative Care), and national policy recommendations have been published, for instance by the Irish government(National Advisory Committee on Palliative Care 2001) and by the Institute of Medicine in the US (Field and Cassell 1997).

Brief Historical Overview

4. The interface between living and dying is a continuum that exists from birth to death. In living, we are dying; in dying, we have the opportunity for living. Health and social care programmes throughout the world are designed to support individuals, families and communities in achieving and maintaining an optimal quality of life. In the context of palliative care, where life expectancy is evidently limited, the issues become more urgent and immediate as we strive to make the best possible use of all available time.

5. Since the beginnings of time, societies have attempted to offer an appropriate level of care and support to their ill and dying members. However, until the middle of the last century, medical science had little to offer in terms of effective pain management and symptom control. Developments in drug therapies in the 1950s, combined with a greater understanding of the psychosocial and spiritual needs of dying patients, paved the way for the development of palliative care services. The principles of palliative care have become more widely understood and applied during the latter half of the 1900s.

6. In medieval times, the term "hospice" was used to describe a place of shelter for pilgrims and travellers. In Europe, the association between `hospice' and the care offered to dying patients dates back to work of Mme. Jeanne Garnier in Lyon, France in 1842. In Ireland, the Irish Sisters of Charity, founded by Mother Mary Aikenhead, opened hospices in Dublin and Cork in the 1870's and subsequently in London in 1905. These institutions were closely associated with the care of patients suffering from advanced and incurable disease. However, efforts to control pain and other symptoms were hampered by a lack of understanding of the nature of these symptoms and further compounded by a lack of effective medications.

7. The 1950's witnessed the introduction of a range of important drugs including psychotropic agents,phenothiazines, antidepressants and non-steroidal anti-inflammatory drugs. Around this time, there was a better understanding of the nature of cancer pain and of the role of opioids in controlling cancer pain. The availability of these new drugs created an opportunity to offer more effective pain and symptom management.

8. In terms of opioid use, there was enormous resistance arising from ill informed and unfounded fears concerning their use. Exaggerated concerns regarding such issues as dependence, addiction, tolerance and respiratory depression hampered their appropriate introduction to medical practice. These fears were shared equally between many members of the medical community and the general public. At governmental level, there often existed significant confusion between the beneficial therapeutical role of these agents and their potential for abuse. In some countries, opioid use was prohibited by legislation. In other countries, opioid use was legalised but their availability was hampered by excessive bureaucracy governing their prescription, storage and dispensing. It is vitally important that we learn from the mistakes of history. There must be no confusion between the appropriate, clinical use of opioid medications and their potential for abuse.

9. The evolution of modern hospice and palliative care owes much to the vision, courage and commitment of Dame Cicely Saunders. A nurse, social worker and physician, she is regarded and acclaimed as the pioneer of the modern hospice movement. Having worked for some years at St. Joseph's Hospice, Hackney, London, Dame Cicely opened St. Christopher's Hospice in London in 1967. This was the first of the modern teaching and research hospice units. Dame Cicely has devoted her professional and personal life to the care and study of patients suffering from advanced and progressive disease. She identified and responded to an appalling deficit in terms of how we address the needs of dying patients and their families. She has always remained focused on the specific and unique needs of each individual patient and family. Dame Cicely Saunders has taught us about total patient care, family care, bereavement care and the need for true interdisciplinary teamwork. In a remarkably short period of time, she has transformed this area of health care and has challenged many of the established negative attitudes and biases. In brief, she has revolutionised the way in which we address the varied needs of dying patients and their families.

10. St. Christopher's Hospice has always sought to promote the principles of palliative care in all health care settings. This enthusiasm to disseminate knowledge and skills was not confined to the United Kingdom, but was also applied throughout the world. Health care professionals from all continents have studied at St. Christopher's and have applied their newly acquired knowledge and skills in their own countries. There is no one model of palliative care provision that is applicable in all situations. However, the core principles of palliative care, with emphasis on addressing the unique needs of each individual patient and family, are universal. The manner in which these objectives are met will vary from one country to another and even from one region to another.

11. When we examine the development of palliative care in various countries throughout the world, it is remarkable to see the impact that even one motivated person can have on affecting change. Typically, one individual who recognises that there is a better way to offer care, drives the initial stimulus for change. Often, because of recent personal experience, this individual acts as a catalyst and inspires others to help bring about change. It is not possible or appropriate to catalogue the development of palliative care in each country. Suffice to say that palliative care services are now developing, albeit at different rates and to different degrees of sophistication, in all continents.

12. Palliative care does not just refer to institutional care. Rather, it is a philosophy of care that is applicable in all care settings. Commonly, we see the establishment of community-based teams, where care is brought to the patient's own home or to a nursing home. Equally, we see different models of palliative care provision within general hospitals. Ideally, patients will have a choice in respect of their preferred place of care i.e. home, hospice, and hospital. Where possible, patients should be able to avail of care in a range of settings, depending on their clinical needs and personal preferences.

13. Over time, the particular needs of hospice patients and their families are attracting increasing attention and discussion in health care programmes across all continents. Whilst the core principles underpinning palliative care provision are universally applicable, the methods necessary to achieve agreed objectives will vary from one country to another. It is the responsibility of health care planners in each country to assess their specific needs and to plan accordingly. In terms of planning palliative care services for the future, we can learn a very important lesson from the past. The focus of all efforts must remain directed towards achieving and maintaining an optimal quality of life for each individual patient and their family. Individual, institutional and group agendas must be subordinated to the needs of patients and families.

14. Recently, a number of studies have provided data on similarities and differences in the development of palliative care in Europe. In a study of 28 countries in Eastern Europe and Central Asia, using an array of quantitative and qualitative methods, it became clear that there are at the same considerable differences in the extent to which palliative care is available to those who need it, and a remarkable similarity in the interest and the energy devoted to setting up comprehensive palliative care services (Clark & Wright 2002).

15. Poland and Russia have the largest number of palliative care services; some of the ex-Soviet republics have no recognisable services. In Eastern Europe, home care is the most common type of palliative care service, followed by in-patient palliative care; hospital teams, day care, and nursing home teams were found to be much less frequent. The study identified five so-called beacons (reference centres) in four countries (Romania, Hungary, Poland (2) and Russia); these are centres that have historically been crucial for the development of palliative care and that usually still play a role as a centre of expertise.

16. The study identified a number of important problems that the Eastern European countries share:

17. The "Pallium" study, funded by the European Commission, reviewed the concepts of palliative care and the related policies in seven Western European countries (Ten Have & Janssens 2002).

18. In the Netherlands, specific projects for palliative care had started from a pioneering nursing home in Rotterdam in the 1970s (comparable to the `beacons' mentioned above); according to this study, the major part of palliative care in the Netherlands is home care, provided by conventional caregivers, and nursing home care. Hospices provide for a small proportion of palliative care; a distinction is made between low-care and high-care hospices, the former predominantly run by volunteers, the latter with a more substantial professional input.

19. In 1998 the government decided for a programme consisting Centres for the Development of Palliative Care in all academic medical centres. Policies in the Netherlands are directed toward the integration of hospices into regular health care system. As a part of this development, there are signs of increasing attention within medical schools: many postgraduate training programmes and programmes for Continuing Medical Education.Increasingly, nursing homes have started opening palliative care units inside their buildings or in specific buildings on their premises.

20. Because of a traditional focus on home care, much of the efforts in The Netherlands are directed toward the training and support of general practitioners. This has lead, among others, to a network of mobile consult teams throughout the country. Since 2000, there is a government programme for support of volunteers, mainly concerning co-ordination and training.

21. The Pallium study found that in Belgium, the government has issued a series of Royal decrees specifying, among others, that every hospital and every rest- or nursing home should have a multi-professional palliative care team, further specifying the professions that need to be represented. On the other hand, professional organisations have worked together with regional and national governments to promote palliative care, with an emphasis on its integration into conventional health care, and with a focus on the home as the locus of care.

22. In Sweden, development in specialised palliative care started with a home-based hospice programme in the south of the country in 1977; this model spread over the country in the next decade. Sweden explicitly rejected, in a 1979 government report, the constitution of stand-alone institutions for the dying (see also Fürst 2000).

23. In Germany, the organisation of palliative care started, after a period of sensibilisation of German society, with the first palliative hospital ward established in 1983, followed by several hospice initiatives and a government initiative to establish 12 palliative care facilities.

24. In Spain, according to the Pallium study, developments in palliative care did not start as a grassroots hospice movement as in most other countries, but have been initiated from the national health care system; pioneering centres were located in tertiary hospitals. A 2000 National Plan for Palliative care mentions a number of 241 institutions for palliative care, half of them home care, caring for 23,000 patients every year. However, these institutions are unequally distributed over the country, no coverage of whole population.

25. The United Kingdom has been, to a large extent, the cradle of specific palliative care services in Europe. The English contributors to this study note that the strong British hospice movement has always remained outside of the National Health System, which has impaired its ability to `evangelise' its approach throughout the system. Palliative medicine has been a recognised medical specialty for a number of years, and its academic status seems robust. However, as in most other countries, the majority of the funding of palliative care still comes from the private sector.

26. In Italy, there has been a development of palliative care since the beginning of the 1970s, leading to a large number of hospices all over the country; recently, the Italian government has given palliative care a prominent place within the "Plano sanitario nazionale".

27. By the end of 1999, the seven countries from the Pallium project showed the following picture:

	Belgium	Germany	Italy	Netherlands	Spain	Sweden	United Kingdom
population (millions)	10,1	81,9	57,4	15,6	40,0	8,8	57,1
In-patient hospice	1	64	3	16	1	69	219
In-patient unit	49	50	0	2	23	69	219
Hospital and nursing home teams	55	1	0	34	45	41	336
Home care	45	582	88	286	75	67	355
Day care	2	9	0	0	0	13	248

28. In Switzerland, the cantons have different accents in health care organisation; the government in French-speaking Switzerland is implied in palliative care, while in the German- or Italian- speaking cantons, palliative care is an area for private initiative. As of 2000, the country had 9 hospital units, 6 hospices, 6 mobile home care teams and 5 mobile hospital teams (2 of which in a university hospital). According to a 2000 report of the Société de Médecine et des Soins Palliatifs palliative care training is very different according to nursing and medical schools; no more than one medical has specific palliative care training lasting a total of 8 hours; it is no examination subject; education is very variable.

29. The abovementioned Swiss report mentions a number of specific obstacles are, firstly, the federal structure of the country with deleterious effects on the distribution and co-ordination of development efforts; secondly, the absence of specialisation because, allegedly, "we all know what palliative care is". Thirdly, budget restrictions prevent the development of a new field of health care such as palliative care.

31. The report mentions a number of points of concern: after an initial period of success, the palliative care movement has blocked in Switzerland, probably because it had remained a personal activity of a few pioneers who have not provided for successors. However, in some cantons (Vaud, especially) palliative care develops on the basis of consensus among all professionals involved, which, although difficult, was crucial. A last point of concern, which clearly is not specific for Switzerland is that up to now, the information of the public has been insufficient.

32. In Hungary, there have recently been important developments in palliative care. In 1997, the Health Care Act was made to contain explicit reference to palliative care, which formally entitles patients to symptom management and to live with their relatives; it states that home care should be offered when possible and that support for relatives and spiritual support of both family and relatives should be available to all.

33. The Ministry of Health Care and Hospice-Palliative Association have published and distributed professional guidelines, a comprehensive version having been published recently.

34. In September 2001, a one-year hospice nurse and coordinator education programme has started. As of 2001, the country disposed of 4 hospice units (a total of 55 beds); 14 home care teams; 2 day care centres; 2 mobile teams (Budapest); and units in 5 nursing homes.

35. Undergraduate training in medical school comprises about 10 hrs devoted to pain & symptom management, about 30 hrs to psychosocial issues. For nursing schools, there is a total of 80 hours of postgraduate nurses training; also postgraduate training for physicians.

36. In Austria, health care policy has taken up palliative care since 3 years and developed a plan specifying the number of palliative beds needed, 3/4 of which should be available by 2005.

37. Austria has no recognised specialty in palliative care and no recognisable specific expertise. There is a total of 8 hospices / units, a total of 100 beds (2001).

38. Training in palliative care is part of the nursing curriculum since 1998, and will be part of the medical curriculum from 2002; in specialist training programmes, very little, but growing attention for palliative care.

39. The financial support for both in-patient units and home care teams is a source of concern, because there is much dependency on relatively uncertain forms of private supplementary financing.

40. As noted in the recommendation, these documents follow the definitions and descriptions of palliative care provided by the WHO in 1991 and 2002 and widely supported by the palliative care field.

41. Before discussing definitions and core principles, it is important to note that palliative care should not be regarded as essentially different from other forms or areas of health care. Such essential differences would make its integration into regular health care difficult if not impossible. Many of the crucial aspects of palliative care apply to curative medicine, as well; on the other hand, the development of palliative care could have a positive influence on other forms of health care by focussing on some underestimated elements such as spiritual problems.

42. The definition of palliative care has evolved over the years, as the field has developed in various countries. Palliative care is defined not by reference to organ, age, disease type or pathology but rather by an assessment of the probable prognosis and with due regard to the specific needs of an individual patient and his/her family. Traditionally, palliative care was regarding as being applicable exclusively at the point when death was imminent. It is now accepted that palliative care has much to offer at a much earlier stage in the course of progressive disease.

43. The term palliative derives from the Latin pallium meaning 'mask' or `cloak.' This etymology indicates what palliative care essentially is about: masking the effects of incurable disease, or providing a cloak for those who are left in the cold, because they cannot be helped by curative medicine.

44. Palliative care involves the use of all appropriate palliative interventions, which may include disease-modifying therapies such as surgery, radiotherapy, chemotherapy, hormonal manipulations etc. The ultimate objective of all of these interventions is to rehabilitate the patient to the greatest possible extent, and to achieve the best possible quality of life. Hence, it is vitally important that palliative care programmes are fully integrated into established health care programmes in hospital and community settings. The relative merits of all approaches to care, both disease-modifying and symptomatic, must be assessed on an individual basis and at frequent intervals, so that appropriate treatment schedules may be implemented.

45. The World Health Organisation has defined palliative care as "the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for patients and their families." (World Health Organisation. 1990)

46. This definition is commendable to the extent that it is patient-focused, emphasises the multi-faceted nature of the human condition and identifies quality of life as its ultimate objective. However, the use of the word "curative" is unhelpful, as many chronic conditions cannot be cured, yet may be compatible with a life expectancy over many decades.

47. Doyle clarified the situation when he wrote `palliative' care focuses on those last years or months of life when death is foreseeable rather than merely a possibility, looking at the pattern of physical, emotional, social and spiritual suffering which may be present, and which should and can be relieved.

48. A more recent WHO definition of palliative care put more emphasis on the prevention of suffering:

"Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual".

49. As an appendix to its most recent definition, WHO set out the following core principle, according to which palliative care:

50. It is useful to further elaborate on these core principles of palliative care.

51. As is evident from the above definitions, palliative care is not defined by any particular illness or disease type. Potentially, it is applicable to patients of all ages, based on an assessment of their likely prognosis and of their particular needs.

52. Terminal care is a continuum of palliative care and describes the management of patients during that period when death is imminent, and likely to occur within a few hours or at most, some days. The use of this term to describe all elements of palliative care is inappropriate and unhelpful.

53. Palliative medicine is the appropriate medical care of patients with active, progressive and advanced disease, for whom the prognosis is limited, and the focus of care is the quality of life. Palliative Medicine includes consideration of the families needs before and after the patient's death.

54. Even when so-called active, disease-modifying treatments are no longer appropriate, palliative care is a very active form of care, which in some instances may be tantamount to intensive care, though different from what is seen in an intensive care unit. Active interventions such as medical treatment of hypercalcaemia, radiation therapy for pain, bleeding or spinal cord compression, chemotherapy for incipient superior vena caval obstruction and surgery for fractures or intestinal obstruction are common. Also, working with patients and families who are experiencing the intense and at times overwhelming suffering associated with progressive loss is an intensely active undertaking. Rehabilitation is generally recognised as an important form of active palliative care.(Doyle, Hanks, and MacDonald 1998)

55. However, palliative care is not only active but also pro-active: it intends to foresee, if possible prevent, but always to take into account possible new problems in the disease process.

56. The core principles underpinning all palliative care services are focused on achieving the best possible quality of life for each patient and their family. This will involve strict attention to symptom control; a holistic approach that takes into account the person's life experience and current situation; care that encompasses both the dying person and those who matter to that person; and an emphasis on open and sensitive communication, which extends to patients, carers and professional colleagues.

57. In Ireland, the Department of Health published a cancer strategy in 1996. this document identified the following principles that should be adopted in developing palliative care services:

58. Palliative care is an area where ethical issues abound; most of them are similar to those that may be raised in other areas of health care. However, some issues, such as end-of-life issues, are clearly more prominent.

59. Consideration of the ethical principles involved in palliative care is based on recognition of the fact that the incurable and/or terminally ill patient is not a biological residue for whom nothing more can be done, a being in need of anaesthesia, whose life must not be prolonged unnecessarily, but a person and, as such, capable to the very end, if integrated into a relationship, of making life an experience of growth and achievement.

60. Professionals should recognise the limits of medicine and refrain from overtreatment. It is important to challenge the illusion that there is only one way of dealing with pain and suffering: eliminating them. It should also be remembered that total pain (fear of death, separation anxiety, loneliness, existential issues, the perception of being a burden on others, etc) cannot be treated by medical means only. It follows that, in the case of total pain, the effectiveness of analgesics is related to the possibility of including medicinal treatment within a significant relationship.

61. Following the four principles determined by Beauchamp and Childress (Beauchamp and Childress 1994) (respect for autonomy, beneficence, non-maleficence, and justice) as in all other areas of medical care, physicians and other caregivers should demonstrate respect for the patient's autonomy by agreeing about priorities and goals of care with the patients and carers, by not withholding information desired by the patient and by respecting the patient's wish not to receive treatment.

62. Caregivers should carefully balance the benefits and burdens of treatment ('beneficence') and assess the risks versus the benefits of each clinical decision ('non-maleficence'), in order to avoid futile treatment, which serves none of purposes of prevention, cure, care, rehabilitation and pain relief. And also to avoid interventions which, although they may achieve partial results, are detrimental to the patient's general well- being.

63. However, the usual rule-based approach to medical ethics as exemplified by the four principles just mentioned, may be insufficient in this area. Recently developed approaches such as the ethics of care (Tronto 1993) and virtue ethics (MacIntyre 1995), seem particularly appropriate for palliative care. The ethics of care stresses the essentially vulnerable and dependent nature of human beings. Therefore, it states that ethics should not only regard decision making, but also the quality of relationships, such as continuity, openness, trust and reliability.

64. Virtue ethics criticises the ethical focus on decisions from the standpoint of character: it stresses the importance of an enduring tendency to act in a virtuous manner.

65. Patients with advanced disease and dying patients have essentially the same rights as other patients, such as a right to receive medical care and personal support (for instance by having a close relative stay by the bed), a right to be informed, but also a right to decline information and/or diagnostic procedures and/ or treatment. Refusal of treatment must be safeguarded especially when appropriate medical treatment will do nothing to forestall death; treatment refusal may in no way influence the quality of palliative care. Most importantly, patients in palliative care have a right to the maximum attainable human dignity, to the best available pain relief and reduction of suffering.

66. As an example, we give the ethical principles of palliative care as formulated by the Hungarian hospice and palliative care association (Hegedüs 2000):

68. By far the largest quantity of palliative care is given in the home; even if patients eventually die in an institution, they usually have spent a large period of palliative care in the home. This has important consequences for palliative care services that will be addressed below.

69. Over the past two decades, a number of reports from the United Kingdom have influenced the development of palliative care services. These reports have identified the following principles of care:

70. It is also recognised that some care settings, although not engaged exclusively in the profession of palliative care services, will attract a higher proportion of patients who require palliative care support. In this regard, it is evident that some nursing homes, elderly care settings and services with a significant oncology workload will have a higher demand for palliative care expertise. At least some health care professionals working in these settings should have the opportunity to pursue additional training and gain additional expertise in palliative care. Also, it is expected that they would develop close professional links with specialised palliative care providers. The overall objective of such stratification is to ensure that patients may engage with a level of expertise consistent with their particular needs at any point in time.

71. A distinction is useful between non-specialist and specialist palliative care services. Non-specialist or conventional services provide palliative care without making this into their core business. They include: district nursing services, general practitioners, home care teams, general internal medicine wards, and nursing homes.

72. The large majority of palliative care is, and will probably always be, provided by non-specialist services. In many cases, non-specialised professionals provide the care without the intervention of specialists; in many other cases, specialised intervention may be needed in the context of non-specialist care, while in a small proportion of the cases, specialists will need to take over the care entirely.

73. Non-specialised services also include services that are involved only incidentally, such as radiology and radiotherapy departments, surgery. Such services sometimes have waiting lists that may be especially detrimental to palliative care patients because of their short remaining life span in which they could benefit from the treatment. Therefore, the concept of a "palliative bus lane", involving preferential access for palliative patients, has been proposed.

74. A specific area where the concept of palliative care has received increased attention over the last years, is the intensive care unit.

75. Non-specialists may build up sufficient experience in relatively uncomplicated palliative care but, due to the limited number of palliative patients they see (in the Netherlands, for example, general practitioners on average see between 2-6 palliative care patients per year), the experience with complex palliative care cannot be acquired. Experiments with easily accessible consultation services show good possibilities of support for non-specialised professionals while the patient can remain within their care.

76. Specialised services denote services fully devoted to palliative care, whose teams are specially trained in this area of care. Such services do not take the place of the care provided by front-line professionals (home care, hospital or rehabilitation facilities), but support and complement such care according to the needs identified and the complexity of the situation. Wherever they are, patients must be able, if necessary, to access such services at all times and without delay.

77. The most common services are specialist in-patient units, hospital palliative care teams, home care teams, day care facilities, hospitalisation at the home, and out patient clinics.

78. There is very little good evidence as to what type of palliative care services are preferred by patients. In a review, Wilkinson et al noticed a trend toward greater satisfaction with specialised services, both in hospitals and in the community, as compared to general hospitals.(Wilkinson et al. 1999). Again, these results should be interpreted with caution.

80. Specialist palliative care services are those services with palliative care as there core activity. They will require a higher level of professional skills from trained staff and a high staff/patient ratio. Such services should be available in all care settings and should be able to support a patient wherever the patient may be: at home, in hospital, in residential care, in nursing home, in day centres, in out-patients or in a specialist palliative care unit. Specialised palliative care services also have an important role in supporting other health care professionals in the delivery of palliative care services at hospital and community level. All health care professionals should be able to access, advise and support from specialised palliative care providers when required.

81. The key characteristics of a specialist palliative care services have been described by the National Council for Hospice and Specialist Palliative Care Services in the United Kingdom and are endorsed by the National Advisory Committee on Palliative Care (Ireland). These are summarised as follows:

82. It is recognised that palliative care is at varying stages of development across Europe. A range of factors, including economic considerations will influence the range and level of staffing that is available. However, all specialist palliative care services should have medical and nursing staff with recognised training and expertise in palliative care.

83. In the UK, the National Council for Hospice and Specialist Palliative Care Services has recommended that the following staff should also be available either full-time, part-time or with regular sessions:

84. Not all specialist palliative care services will be in a position to satisfy all of the above recommendations.

85. Specialist palliative care services should provide care options in a broad range of settings. Services should be structured so that patients may move readily from one care setting to another depending on their clinical needs and personal preference. The following are the various settings in which specialised palliative care may be provided. These are not isolated entities but rather function as a coordinated, integrated and cohesive unit.

86. In this setting, dedicated beds are provided for palliative care purposes. Such units will require a highly trained interdisciplinary team and are designed to care for patients and families with more complex physical, psychosocial and/or spiritual needs. These units will be closely integrated with the range of hospital-based and community-based services. Frequently, they are located on the grounds of or adjacent to a general hospital setting.

87. This term describes a situation whereby a specialist palliative care team functions in an advisory and supportive capacity within a general hospital. The patients' care remains the primary responsibility of the physician or surgeon but they are supported and advised by specialist palliative care personnel. This model serves to disseminate palliative care principles amongst other medical colleagues in the hospital setting.

88. Many patients will express the wish to have their care undertaken in their own home or in a place that has become their home i.e. nursing home, residential care setting etc. The specialist palliative care team will visit patients in this setting and advise on their management. Some patients may require a short admission to the specialist palliative care in-patient unit so that particularly complex problems may be addressed. However, it is anticipated that they will then be in a position to return back to their original home.

89. Day care is may be provided by a palliative care in-patient unit, but also to a nursing home or other institution. Patients may attend on one or more days each week. Services offered may be considered as medical (blood transfusions, review of pain and symptom management etc), social (shower/bath), rehabilitative (physiotherapy/occupational therapy), relaxational (massage) or diversional (art & crafts). Also, they serve to give the main carer an opportunity to have some free time.

90. The provision of an out-patient assessment clinic is a valuable element of a palliative care programme.

91. Specialist in-patient units usually have a capacity of 10 to 15 beds, admit patients whose degree of suffering (physical/psychological/social) calls for specialised interdisciplinary palliative care, either on a temporary basis or until they die. They also have a training and research function. They may be located within a hospital, thus receiving input from other specialists and deriving benefit from the available medical technology, or they may be totally independent. In the latter case, close links with a hospital possessing appropriate technology are desirable.

92. The occupancy rate of a specialist in-patient unit must be such as to permit the admission of patients without delay at all times, particularly those previously cared for at home. Until recently, the need in terms of palliative care beds for cancer patients was estimated at around 50 for every million inhabitants. However, this figure, which takes into account neither the needs of patients suffering for non-oncological diseases nor the increasing prevalence of chronic diseases related to the ageing of the European population, probably underestimates the real need by half. Generally speaking, the number of beds in a given region will depend on the demographic and socio-economic context and on the availability or unavailability of other specialist palliative care services (respite beds, hospitalisation at home, etc).

93. Hospital palliative care teams, which usually comprise at least one physician and one nurse specialising in palliative care, but often include other professionals too (social worker, psychologist, chaplain, etc), act as consultants at the request of care staff, the hospitalised patient and his or her relatives. They co-operate closely with various other specialists (referring doctors, oncologists, radiotherapists, etc) and other health care professionals such as social workers, psychologists and chaplains. They also perform a training function.

94. The functions and mode of operation of home care teams are similar to those of hospital teams. They assist patients living at home, in a nursing home or in any other community setting, at the request of the primary care providers.

95. Several studies have described the many organisational, functional and financial obstacles facing isolated hospital and home care teams. It is essential that these teams be attached, or at least have close links, with an in-patient unit. As well as ensuring that teams receive support and continuing training, such links, whether formal or informal, lead to increased continuity in the care of patients.

96. Day hospitals offer day care, one or more days a week, for patients living at home. Facilities of this kind have so far developed mainly in the United Kingdom. The available data shows a great variety in their functions and modes of operation. The purpose of a day hospital may be to evaluate symptoms; to administer various forms of treatment in a convivial setting; to offer respite to patients, relatives and the primary care team, thus making it easier to keep patients at home and avoid unnecessary hospitalisation; to provide psychological support; and to pursue any other complementary approach (music therapy, etc) aimed at improving quality of life for patients and their relatives.

97. In some countries, France or Finland for instance, a service called "hospitalisation at home" or "home hospital" involves increased provision of medical and nursing care in order to ensure that patients who would otherwise have to be hospitalised are kept at home. It involves more hospital-like care than home care teams usually are prepared to provide. There are different organisational models, ranging from an upgrading of existing resources within the home to the provision of a specialist team attending to all needs.

98. Out-patient clinics tend to be situated in an acute care hospital and consultations are generally performed by the hospital's mobile team, who provide counselling on an ad hoc basis for patients living at home who are able to attend the clinic.

99. A telephone helpline provides advice to professionals on caring for palliative patients and facilitates access to services specialising in palliative care, such as mobile teams or in-patient units. Through the formal links, which it maintains with other professional and voluntary workers, it also offers assistance in the form of advice and referral geared to each specific situation. Helplines of this kind are usually the result of co-operation between several specialised services within the same region.

100. The quality of the care provided in a given region depends not only on the quality of the care provided by each individual service, but also on co-ordination of services and the co-ordination existing between specialised services and primary care providers. The organisation of services into a co-ordinated regional network improves access to palliative care and enhances the quality and continuity of care.(Elsey and McIntyre 1996; Mitchell and Price 2001; Schroder and Seely 1998)

101. The operation of such a network calls for a co-ordinating body or person (this function can be performed by an interdisciplinary group of professionals representing the various services involved in the network, or by the in-patient unit), a range of facilities corresponding to the different levels of care required by patients (in-patient unit, respite beds, home, hospitalisation at home, day hospital, long-stay hospital, acute care hospital), and liaison services (mobile hospital and home teams).(Zalot 1989) A network of this kind serves several different purposes: as well as co-ordinating care, it can evaluate its results (audit) and co-ordinate training and research.

103. Various member states of the COE have developed, in the last decades, comprehensive national plans for the development and maintenance of palliative care as an integral part of the health care system.

104. By way of examples and without suggesting to be complete, we will mention three such states. See also the chapter on general considerations.

105. Spain has developed a palliative care plan, which has been adopted by the interregional council of the national health care system, the Plan Nacional de Cuidados Paliativos; Bases Para Su Desarrollo (18 December 2000). The plan intends to offer palliative care according to need, preferably publicly financed, to encourage the co-ordination of the levels of health care provision, to ensure equity, to stimulate quality, effectiveness and efficiency, and to ensure satisfaction among patients, families and professionals. More specifically, the plan aims to facilitate interdisciplinarity and co-ordination with other (non-health care) sectors involved, to direct the attention to the home as the most appropriate place for palliative care, to ensure the development of guidelines and standards, and to stimulate the education of professionals and families. With regard to education, the plan distinguishes between a basic, an intermediary, and an advanced level of expertise. The Spanish plan contains an elaborate description of the way it will be evaluated.

106. In Hungary, the 1997 Health Care Act contains explicit reference to palliative care, which formally entitles patients to symptom management, to live with their relatives; home care should be offered when possible; support for relatives and spiritual support of both family and relatives is specified in the Act. The Hungarian Ministry of Health Care and Hospice-Palliative Association published and distributed professional guidelines.

107. In Ireland in 1999, to take a last example, the Minister for Health and Children established a National Advisory Committee on Palliative Care, which published an advice encompassing all aspects of palliative care policies, also regarding organisation and financing, in which it was proposed that palliative care should be a separate area of government funding.(National Advisory Committee on Palliative Care 2001)

108. In most documents concerning national and regional policies, great importance is attached to public opinion and the role of governments, professional groups and non-governmental organisations in promoting an adequate image of death and dying and the care for patients with advanced incurable disease. An example of such policies outside Europe has been the "Death in America" project, funded by the Soros Foundation, in which death and dying was put on the public agenda through all kinds of means, ranging from public debate to theatre plays.

109. The basis of palliative care policies, both national and regional, is knowledge about the needs of patients. In order to develop and monitor national strategies concerning palliative care, countries will need the continuous gathering of basic data, a Minimal Data Set (MDS), which will, for example, involve epidemiological data, data about the use of palliative care services, specified according to groups, and data about the availability of such services in different regions; the content of an MDS partly depends on the specific information needs of different countries.

110. Some member states have performed a needs assessment study. In the example of the Netherlands, a government-sponsored study was undertaken in which an attempt is made to establish the actual and future needs of patients with advance disease; on that basis, the types and quantities of necessary care facilities are being established. Experiences with a so-called Minimum Data Set defining the data minimally needed to do and monitor such needs assessments are encouraging.(National Advisory Committee on Palliative Care 2001)

111. Although data on the extent to which underprivileged members of society can access palliative care are scarce, there is a feeling in the committee that homeless people, those with a cognitive handicap, refugees and others may experience difficulties in accessing the palliative care they need. There are indications that people from ethnic minorities are underrepresented among patients receiving palliative care. This may be due to a lack of "feeling" for the culturally specific demands of these patients with regard to end-of-life care.

112. Children with an incurable and life-threatening disease pose particular challenges to the delivery of palliative care, which will most often be delivered in the home; however, the scarce data suggest that palliative care is insufficiently available for children (Clark 2002; Mabrouk 2001). Children require special services, delivered by the personnel with pedagogic training, particularly the nurses. It should be followed by the home care, offering support to children and their family.

113. In many countries, palliative care is either unknown to the general public or suffers from negative connotations such as fatalism. This may lead to a lack of public attention, which, in turn, may lead to insufficient interest, for instance in joining volunteer organisations. A lack of public interest may also lead to a continuing marginalisation of death and dying.

114. There are data suggesting that access to palliative care is dependent upon the type of disease patients have (cancer patients enjoying greater access), and also on socio-economic factors. Furthermore, in some countries the availability of intensive terminal care is restricted to patients having a limited prognosis, for instance 3 months. This restriction almost always causes great problems when patients live beyond their original prognosis, but remain in need of high-quality palliative care.

115. Pharmacological interventions form the basis for symptom control. Other dimensions of suffering such as the social transitions linked to severe disease and dying as well as the spiritual needs are much easier to alleviate if adequate medical treatment has been given. However, in some countries there may be problems concerning production and logistics on the level of the local health care units. Also the economical support that may be needed to give appropriate pharmacological treatment has to be dealt with on a national and local level.

116. The availability of narcotic drugs is a specific concern since availability is often insufficient due to legal restrictions, both in terms of the variety of opioids available and different dose regimens. Morphine is the most commonly used opioid drug. Most cancer related pain is opioid responsive but contrary to most other analgesic drugs the effect is dose related, which means that there cannot be a fixed dosage for everybody but may need to differ between ten and several thousand mg per day.(Foley 1995; Foley 1996) Different opioid drugs have to be available since the individual response in terms of effect and side effects may require a change from one drug to another.(Indelicato and Portenoy 2002)

117. When the opioid drugs are used appropriately for the treatment of pain there is no evidence for drug abuse being any problem. The WHO and the European Association for Palliative Care (EAPC) have published guidelines for the management and treatment of pain.(Hanks et al. 2001; World Health Organisation. 1990)

118. Within federal, national or regional plans, particular attention should be given to minority categories of patients, such as institutionalised disabled persons, children, prisoners, etc. These persons should have immediate access, at all times and on a non-means-tested basis, to the services provided by the various special facilities and receive care tailored to their specific needs.

119. Generally speaking, quality improvement in palliative care is no different from quality improvement in health care as it has been described in Council Of Europe recommendation R(97) 17 and its appendices.

120. However, some of the 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; see chapter 1) make for specific aspects of quality improvement and maintenance in palliative care.

121. In the medical profession as a whole, the development of evidence-based clinical guidelines has been one of the major innovations. Although guidelines for palliative care have been developed in many countries, the relatively weak evidence base of many common interventions in palliative care has been an obstacle to the development of strong guidelines. Fortunately, the Cochrane collaboration, the most important international body promoting evidence-based guidelines, has a section on palliative care.

122. Continuous improvement of the quality of care may be defined as a systematic process of evaluation and improvement of the quality of the services provided.

123. Procedures for evaluating the quality of care are, however, still lacking in many institutions specialising in palliative care. For this reason, the literature on this field still provides incomplete data.

124. There are many reasons for this inadequacy of quality evaluation. Among other things, quality evaluation calls for methodological skills and logistic resources, which are not always available to institutions that are usually small in size. The implementation of an evaluation procedure calls for the prior definition of quality standards, the use of evaluation methods suited to the palliative care context, such as multidisciplinary audits, and appropriate tools for measuring the results.

125. The measurements performed may simply involve collecting demographic, administrative and diagnostic data, which will provide standardised information on the type of patients cared for. They may represent performance indicators such as a service's response time or the proportion of non-cancer patients cared for, which will provide an estimation of the extent to which the goals set have been achieved. They may also be more complex measurements making use of tools for evaluating various quality dimensions. Among those currently available, some have been developed specifically and validated in the field of palliative care, such as the Support Team Assessment Schedule (STAS), the Edmonton Symptom Assessment System (ESAS) or the Palliative Care Outcome Scale (POS), for example.(Bruera et al. 1991; Hearn and Higginson 1999; Higginson and McCarthy 1993)

126. They are useful not only for a quality evaluation process but also in everyday clinical practice. It is advisable to use tools that have been validated rather than to develop new ones.

127. It is essential to develop quality standards and disseminate them among all institutions specialising in palliative care. Many clinical and service evaluation audits depend on the existence of such standards, in the light of which it will be possible to evaluate practice. A standard is the identification of a `good practice' in a specific area of care.

128. Standards may be developed at national and regional/local level. The national level makes for a coherent development and monitoring strategy, as well as saving time and energy

General consideration

Brief Historical Overview