1. General considerations
1. The importance of palliative care as a comprehensive,
holistic approach, with the potential to complete and improve existing
care programmes is now recognised in many of the world’s countries.
2. Initially, palliative care was seen as a way of caring for
people whose death was imminent. It is now recognised that holistic
care offers people with incurable diseases great benefits far earlier
than that. For example, it includes and completes curative therapies,
whose undesirable side-effects can be mitigated by early intervention,
or addresses – with psychosocial or spiritual support – needs which
can be more depressing for patients than physical illness. In practical
respects, too, limiting palliative care to end-of-life patients
is counterproductive, since the idea that they have been “given
up on” frightens them and puts them on the defensive.
3. Extending such care to persons who are not life-threateningly
ill (for example, chronic sufferers) and to the elderly in general
is a major task for the future. The care currently provided for
people in these categories is particularly inadequate, reflecting
the need to make savings in the health care sector. Like people
in the final stage of their lives, chronic sufferers have a multitude
of disorders – including psychosocial disorders – and so palliative
care’s comprehensive approach has much to offer them.
4. The importance attached to patient autonomy, particularly
in the last phase of life, reflects the fact that dying is no longer,
in many cases, a natural occurrence, but is heavily influenced by
medical decisions and usually takes place in medical facilities.
Medically prolonged life can be prolonged suffering, and many people may
seek to avoid it by demanding active euthanasia or making living
wills, in which they specifically forego treatment.
5. Comprehensive, country-wide provision of palliative care programmes
is needed to effectively stem the ever more pressing demand for
active euthanasia in many European countries.
6. The European Region of the World Health Organization (WHO)
comprises 52 states with a total of 879 million inhabitants. In
those states, some 9 million people die every year, 24% of them
from cancer. Given the increasingly high average age, particularly
in western countries, an enormous rise in the number of cancer patients
can be expected. It is widely agreed that demographic growth makes
the need for country-wide, high-quality palliative care even more
urgent.
7. While the European Union’s commitment to providing improved
palliative care programmes has so far been limited, steadily growing
efforts have been made in recent years in a broader European context.
The first reliable and systematic data collected by the European
Association for Palliative Care (EAPC), which was founded in 1988,
show that only a very few states provide no hospice and palliative
care.
8. However, country comparisons show major differences in the
quality of care, and in the speed with which this sector is developing.
In certain states (for example, Germany), the provision of good
care is a problem only at regional level. An essential factor in
successful development seems to be the extent to which palliative
care has been implemented within the existing health care and other
parts of the social security system.
9. In recent years, the World Health Organization (WHO) has made
an intensive study of issues relating to palliative care, and it
published two documents dealing with specific aspects of such care
in 2004.
Its
definition of palliative care (1999, updated in 2002) is internationally
accepted: “Palliative care is an approach aimed at improving the
quality of life of patients and of their families, who are confronted
with problems accompanying a life-threatening disorder, that is,
by preventing and easing suffering as well as by early recognition
and treatment of pain as well as of other physical, psychosocial
and spiritual disorders.”
10. Unlike the EU, the Council of Europe had already started working
intensively on the development of palliative care. Inspired by the
European Health Committee’s 1980 report, “Problems related to death:
care for the dying”, and by Parliamentary Assembly
Recommendation 1418 (1999) on protection of the human rights and dignity of the
terminally ill and the dying, the Committee of Ministers decided,
in 2001, to set up an expert committee. Within two years, this committee
had drawn up European guidelines on the organisation of palliative
medical and nursing care. On 12 November 2003, the Committee of
Ministers adopted Recommendation Rec(2003)24 to the member states
on the organisation of palliative care, which was buttressed by
a comprehensive explanatory document. By the following year, this
text had been translated into 17 European languages, and so had
clearly been noted by most European countries.
11. The report describes palliative care as “an integral part
of the health-care system and an inalienable element of a citizen’s
right to health care” (recommendation). “Palliative care policies
should be based on values propounded by the Council of Europe: human
rights and patients’ rights, human dignity, social cohesion, democracy,
equity, solidarity, equal gender opportunities, participation and
freedom of choice.”
12. Palliative care has the following core dimensions:
- symptom control;
- psychological, spiritual and emotional support;
- support for families;
- support for the bereaved.
13. The report calls on the governments of the member states to
adopt the policies, and the legislative and other measures needed
to provide a coherent and comprehensive national policy framework,
and to promote international networking between organisations, research
institutions and other agencies active in the palliative care field.
14. It notes that “while in many countries the greater part of
health-care budgets is spent on people in their final years of life,
they do not always receive the care that is most appropriate to
their needs”.
15. This cautious wording highlights the central problem of the
highly sophisticated and costly health care provided particularly
in western Europe, which, at ever shorter intervals, produces new
medical techniques and medicines, raising high public expectations
of curative success. At the same time, however, this type of health care
is increasingly – and obviously – failing to meet the basic needs
of people suffering from chronic or rare diseases, or from conditions
certain to prove fatal in the short or longer term.
16. A comprehensive vision of palliative care as an attempt to
rethink the whole concept of medicine emerged, for obvious reasons,
in the 1960s from a civic movement which extended beyond the European cultural
area. In many countries throughout the world, certain sectors of
society are demanding, and providing, patients and sufferers with
various forms of complementary care that are meant to compensate
for the present shortcomings of “modern medicine”.
17. This development is the fruit of parallel efforts by private
individuals and professionals. In some countries (for example, the
United Kingdom), it has achieved remarkable successes within a relatively
short time, in spite of very limited public funding.
18. Since the first palliative care programmes started in the
United Kingdom, approaches to implementing them have changed in
many ways. Specialised centres or hospices are still the commonest
providing institutions, but care units are increasingly being established
in acute patient centres, oncological centres and university hospitals.
In addition to the hospital units and home teams that provide palliative
care, many countries have set up mobile or support teams in general
hospitals to supervise care and treatment of patients. There are
programmes in nursing homes, and also highly specialised teams,
which bring hospital facilities to patients’ homes. Day care centres
are another possibility. Lately, palliative care teams have not
been confined to set locations; in some countries, they now provide
help wherever it is needed – in hospitals, patients’ homes or nursing
homes.
19. One major requirement for the future is indicators that can
be used to determine the effectiveness of the legal framework, and
the quality of care, training and research. Devising such indicators
is not easy, as the example of one suggested indicator, “place of
death”, shows.
20. Continuing expansion of structures that are not focused on
specific diseases (cancer, Aids) is threatened by the serious financial
problems that high unemployment causes for social security systems.
At a time when huge sums are being spent annually on stabilising
and safeguarding the existence of people who are wholly or partly
unable to support themselves and their children unaided, and the
number of employed taxpayers is constantly falling, there is little
scope for investment in the future (education, training, environment)
or in innovative social and health care projects. The extent to
which voters will reward MPs for pursuing longer term political
strategies is doubtful – particularly if these entail benefit cuts
that are instantly felt by the masses.
21. As it is, the level of care in the nursing sector is already
inadequate. Impending demographic changes will considerably aggravate
this problem, unless existing structures are modified sustainably.
Caring for palliative patients in nursing homes will become one
of the main problems of the next decade. The palliative care approach
will be particularly important in caring for the elderly – as indeed
it already is today.
22. Germany is not the only country where the seriously ill and
the dying have no lobby. Political and health care decision makers
do not see palliative patients as lucrative clients. This is a fundamental
problem that needs airing, and politicians must tackle it bravely.
23. Palliative care does not simply meet a cultural and humanitarian
need of the most pressing kind. It also provides an innovative structure
which, if intelligently developed, will not only produce sustainable
change in the health sector, but may also serve as a recipe for
success in other policy areas with serious, systemic and recurrent
problems (drug prevention, education, labour market).
24. Considerable attention must be paid to the concept of autonomy,
and to this principle’s significance in medical decision making.
Playing a really major role in palliative care, patient orientation
is one important indicator of success. Even if the data are hard
to collect, we need to know whether patients feel more autonomous
as a result of palliative care, and what significance they attach
to this increase in their capacity to act (for example, decide where
they want to die). At the present stage of the debate, patient autonomy
is an issue only in relation to medically indicated treatment, for
example, when patients refuse it (they cannot demand procedures
that are not medically indicated). Problems are caused by the various
factors that may affect the medical indication. Nor is it quite
clear how borderline cases are to be assessed. A patient may want to
go home, for example, but relatives refuse to provide care (for
example, because they feel unable to cope). How can a doctor evaluate
free will in an Alzheimer’s patient, who may not understand his
explanations fully?
25. Europe is a prolific source of best practices: next, we shall
look at provisional data from studies carried out by a task force
set up by the European Association of Palliative Care. These studies
set out to evaluate the development of palliative care in Europe.
They are jointly produced by several organisations, including Hospice Information,
the International Association for Hospice and Palliative Care, and
the International Observatory on End-of-Life Care at the University
of Lancaster.
26. The data reveal wide differences in the provision of palliative
care between countries, regions in the same country (for example,
urban and rural areas), a one-sided emphasis on certain patient
groups (cancer patients), inadequate provision for children in comparison
with adults, and insufficient involvement of the care sector. Few
countries have official treatment standards, and even fewer have
standards laid down by governments.
27. Few people would deny that death is still a taboo subject
for scientists and the public. In medicine, this becomes patent
when it turns out that doctors, whose training has given them a
vast amount of specialised knowledge, still have no idea how to
deal with dying people in practice. Against this background, the
successes scored by that new speciality, palliative medicine, are
indeed highly gratifying – but a systematic, scientific look at
the past remains essential. We should, after all, be anxious to
find out how such a vital field for medical skill could simply be
ignored.
2. The problem: a fatal automatism
28. The increasing demand for active euthanasia in the
interest of patient autonomy is another reason why intensive scientific
discussion of the various conceptions of autonomy is needed. Far
from bolstering autonomy, living wills may actually generate a dangerous
illusion of autonomy, tempting doctors to decide against patients’ vital
interests in genuinely borderline situations, and damaging the bond
of trust between doctors and patients.
29. The introduction of living wills, which is now being discussed
in Germany, offers no solution to the problem of properly ascertaining
patients’ wishes, since those wishes give doctors an adequate basis
for decision making only when they are unequivocally expressed.
In practice, they are usually embodied in contradictory statements,
which require clarification or, when this is impossible, skilful
interpretation, to give doctors clear guidance. Indeed, few living
wills are contradiction free.
30. There is a question which, in terms of the doctor’s human
duty to care for despairing patients, is beyond discussion, but
is vital from an ethical standpoint – the specific purpose of ethical
codes. Should they, for example, help doctors to take difficult
decisions of conscience on care of the dying by relaxing ethical
standards (guidelines)? Surely, this very relaxing of standards
makes for confusion in the longer term, since ethics – as a rational
yardstick for action and a pointer to options within definite, clearly
defined limits – gets lost along the way?
31. The genuine ethical importance of successful communication
between doctor and patient does not lie in the latter’s being able,
with the former’s help, to make an (ideally) informed choice between
possible therapeutic options, like a supermarket customer deciding
to buy a certain product. It lies in the patient’s assuming responsibility
for this decision, and being clearly aware of the drawbacks and
side-effects of a therapeutic measure before he/she decides.
32. Questions that affect the life or death of human beings cannot
be left undecided in a liberal legal system. On the other hand,
deciding not to decide them, and leaving them open to a range of
answers or the random preferences of individuals, is in itself a
momentous decision against reason as counsellor. Rational discussion holds
the only key to reducing the many problems and solutions at issue
to basics. Indeed, it offers the only way of gaining an overall
picture of the alternatives available, steering clear of imagined
consensus or specious disagreement, and averting the danger of the
debate’s becoming ideological.
2.1. Utilitarianism: bliss without
sense
33. For a long time, it was blithely assumed that the
health benefits of medical treatment could be objectively and scientifically
proved with sufficient clarity, but the structural shortcomings
of objective methods are now becoming more apparent. Clinical tests
can reliably demonstrate the utility of medicines or treatment only
if:
a. the physical causes
on which the latter are based are genuinely present, and
b. any alternative treatments or absence
of treatment are systematically compared with the new one. Clinical
tests for the approval of medicines are far less strictly regulated
than they ought to be. They require subsequent evaluation, of the
kind carried out for evidence-based medicine by independent scientists.
34. Care should also be studied, broadening the focus to take
in the everyday conditions in which medicines, for example, are
used. Benefits for specific patients should be considered as well.
The hope is that new methods can be used to keep the wildly proliferating
medical possibilities under rational control. Pharmaceutical firms
have no interest in critical research of this kind. Willingness
to invest additional funds in the evaluation of clinical tests and
in research on care depends on public awareness of the difficult
issue of quality of medical treatment, which obviously needs to
be guaranteed, in everyday medical practice, by quality management
as well. The concept of quality has been called the “sleeping giant”
of rational health care,
and the ethical dimension
now confronts science with a serious problem of method.
35. The whole debate on quality, which has been given a new dimension
by the concept – also very important for palliative care – of the
patient’s quality of life, reflects the not immediately obvious
fact that knowledge with a secure and objective clinical basis can
be totally irrelevant to human health. What yardstick to apply,
if objectivity itself is not enough, is, however, a question we
cannot answer definitely at present. In addition to that of effectiveness,
the concept of appropriateness provides extra bearings that can
help us to determine utility. In the present discussion, the use
of several yardsticks makes it harder to reach a clear verdict.
Theoretical method assessment, of the kind possible when ethical
aims are the yardstick, could prove extremely useful in the quality
debate.
36. One genuinely ethical issue in health policy is the fair allocation
of resources. Without a sensible vision of health goals and care
priorities, public debate – which is also needed to secure consensus
– is likely to get bogged down in the battle of conflicting interests
and lobby groups.
Patient autonomy
is a very important concept for health policy in general and palliative
care in particular. Comparison of utilitarian and other social theories,
ethical theories that are purely political and ethical theories
that are based on personal ethics, may be very helpful in trying
to form a first, general idea of its significance. There is no room
for the autonomous individual in purely political ethics, and even
less in pure social theory.
37. Theories that see the state or society as substantial entities
tend to see social processes as automatic, as things that need to
be put on the right track, but can then be left to regulate themselves.
In these theories, there can be no irreconcilable conflict between
the interests and rights of individuals and those of the community
as a whole. In a modern, variant-like system theory, things are
always seen from the standpoint of the existing system, which is
why – given the acute signs of crisis in social insurance systems
– new mechanisms and levers are desperately being sought to repair
the automatic process. The system is to become capable of learning,
and subsystems are to limit themselves and take on responsibilities.
38. Concepts, which are actually meaningful only when applied
to individuals, are thus being applied to systems. In the past,
many people were unwilling to speak of ethics in a social context,
and certainly not of personal ethics. Almost as a matter of course,
people today regard ethics as unnecessary for life in the community,
since social theory supplies an automatism that works, and so makes
ethics a purely private matter. In many contexts, and particularly
in discussion of old age, care and dying, ethics has now been rediscovered
in the social context too, and some of the things that were said
in the past have a very uncomfortable ring.
2.2. Systemic problems: economy
as an end in itself
39. It is becoming apparent that end and means have already
been extensively reversed in the care sector. Instead of the institution’s
serving the people it caters for, those people are shoring up the
institution, and have to adjust to things which – in terms of the
institution – are seen as making economic sense. Money is being spent,
not on carers, but on products and computer software.
40. In general, this insistence on economic aspects encourages
the health system to pursue the wrong goals. It is re-visualised
as another “growth market” or “job machine”, and alienated from
its real purpose, that of serving the sick. The growing tendency
to see society in economic terms generates fatal patterns of dependence,
and makes fear of losing one’s job the mainspring of human action.
An ideologically coloured economy, of the kind analysed in connection
with utilitarian theory, creates psychologically unbearable working conditions,
makes people sick or sicker (more in need of care) than they need
to be, and – as justifying social theory – stifles dissent.
41. “Economisation” is often seen as a lack of willingness to
tackle questions of cost rationally, and rejected on that basis.
Here, we use the term to mean that economic considerations take
precedence when political goals are being determined. It is precisely
this approach that marks the difference between a liberal market position,
which attaches equal importance to economic and other goals, and
a neo-liberal position, which focuses on trade issues.
42. Discussion frequently ignores the fact that serious ethical
conflicts arise in practice – certainly with considerable effects
on health – when financial and competitive pressures make service
providers give customers bad advice, for example, omit to mention
the drawbacks of certain products or services, to ensure their own
economic survival. The problem here is payment on results for counselling.
The negative effects of bad advice often reach the customer a long
way down the line, sometimes giving rise to immense secondary costs,
which the community has to cover, if important questions have previously
been left to the individual’s discretion.
43. Looking at the present state of nursing care in Germany, it
has to be said that the funding of palliative medical services within
the existing health sector structures is a key problem that has
yet to be solved. Palliative care requires a high-person/low-technology
approach, which explains why voluntary work is so important in many
European countries.
44. In Germany, strict demarcation of the various sectors and
trades causes serious interface problems. Increased competition
between service providers for the limited resources available, encouraged
in recent years by politicians for economic reasons, has forced
statutory health insurance bodies to compete more than before for
young, well-paid members. As a result of badly planned fiscal equalisation,
which fails to take account of the real risks of disease and costs
caused by sick members – and although certain services (including
palliative care under the present reform law) must be provided –
these bodies are noticeably reluctant to provide services for the
chronically or terminally ill, for fear of attracting the (economically)
“wrong” customers.
45. In many health care systems worldwide, there is a growing
impression that the structural changes introduced to cut costs (diagnosed-related
groups – DRGs) are not suited to palliative care. Important advances
made in that highly specialised sector are now under threat, since
multimorbid patients with multiple health-related, psychological
and social problems cannot be standardised.
46. The economic sums that have been done for the health system
are wrong – not just morally or in terms of health policy, but economically
too. As a result, the wrong market incentives are themselves becoming
a health problem, one which neither the health system, the welfare
state, nor the labour market can solve. The market, whose laws we
obey, wants tradable products. These are the only ones suited to
the world market, and national governments have, in their neo-liberal
eagerness, made the fatal mistake of overlooking the change in economic
policy that the product/service relationship has brought about.
47. Products are edging services out, and being deployed in the
belief that the latter, which cost far more, will somehow be dragged
along behind – and be covered by their profit margins. With product-pricing competition
becoming ever more aggressive, this is now a total illusion. As
a result, services – by comparison with products – are underpriced.
Doctors receive a pittance for making house calls and looking after
their patients in a human spirit, and are forced to make up the
economic shortfall by prescribing various products.
48. The extent to which the welfare state can make up for this
mistaken economic policy is limited – particularly since transnational
firms notoriously externalise social costs and reap stock exchange
benefits from mass redundancies. The result of globalisation is,
at most, increased prosperity for a few people in the short term.
And it is no longer true, as we can see ever more clearly, that
everyone benefits indirectly via a welfare state, which functions
effectively and assuages social conflicts. The profits go to a few,
who become ever fewer, and systematically evade their social responsibilities.
The longer term result for everyone is, however, environmental and
social dumping, armed and unarmed conflict over resources, and the
problem of mass unemployment, which the world trade system makes
insoluble, even in the rich industrial nations.
49. Consistent and effective sustainability programmes, capable
of counteracting the “dictatorship of the short term” imposed by
the economic system, will thus be vital to survival in the medium
term. To work later, however, they must be implemented now. In political
terms, this means that the increasingly serious constraints and
consequences of globalisation (increasing competitive pressure,
unemployment, declining tax revenue, poor working conditions, energy
waste, and severe environmental damage) must be tackled in the short
term, and new, trendsetting structures established. This challenge
can be met only by promoting policies that generate new synergies
in various fields.
50. Personal ethics should be used to put the welfare state and
medicine on a new tack (this is possible, in model form, in the
sphere of palliative care), and can supply a consistent and practical
concept of autonomy. This concept, as we have seen, is complex,
and it can – if its abstract, guiding function is properly grasped
– both assist legislators and contribute to the meaningful life-planning
and personal development of individuals, who must themselves be
strong and independent to support a strong community and functioning
state system.
3. Bases for change
3.1. Medicine’s essential task:
to serve the whole person
51. A conception of illness that is still largely based
on scientific paradigms cannot allow adequately for its social dimension
– a dimension which is clearly present, for example, in most mental
illnesses and in psychosomatic diseases, which are still not easily
delimited. The effects produced by changes in a person’s way of
life, old age and environmental factors, which underlie chronic
illnesses or multimorbidity, are also beyond the reach of clear
diagnosis and causal therapy.
52. Radical changes in the range of illnesses in the 20th and
21st centuries, demographic trends that make geriatric medicine
and care important, a new self-awareness among patients and, last
but not least, the pressure exerted by powerful expectations that
medicine itself has partly generated together constitute a major challenge.
An idea familiar for many years, which has only recently resurfaced
in public consciousness, is that of the link between health prospects
and poverty. Looking back in the field of primary prevention, many
things, regrettably, were not done; looking ahead, we have no viable
plan for the future.
53. Given the extent of the problems, medicine will not be the
only, or probably even the most important, strategy. At all events,
doctors will also have to realise that resources currently tied
up in curative medicine are needed in other areas with strong relevance
to health, for example, education, social assistance and environment
– and act accordingly. Growth in the health sector is by no means
a good thing for the community, if it makes no difference which
areas are growing. Blind confidence in the market – the belief that
only the economy matters, that growth anywhere is good – is no guarantee
of progress, and the fact that doctors and pharmaceutical firms
are working hand in hand is no indication of health service quality.
54. The problem for patients is not usually dying as such, but
fear of pain. The problem for families is their inability to form
a true picture of the situation. They do not want to assume that
a relative is dying, since this may not be correct. The same uncertainty
affects doctors, whose training has not prepared them adequately for
cases where there is no hope. The situation is a bad one, when doctors
are unable to show patients and their families the path that leads
beyond fear, uncertainty and ignorance. And yet, there is no doubt
who the guide should normally be.
55. The general practitioner’s guiding function – now, after a
period during which general medicine was massively neglected in
favour of specialised medicine, which health systems saw as a way
of avoiding double consultations and saving money – is totally obvious
in the case of dying patients and their needs. General practitioners
(GPs) can protect patients against pain, fear and, above all, pointless
medical intervention, and ensure that they really receive the attention
they require. Admittedly, this depends on their efforts’ being recognised
and properly remunerated, which is not the case at present.
56. The fact that the training given doctors and nursing staff
does not teach them how to deal with people who can no longer be
cured throws an unflattering light on the medical profession’s perception
of itself, and on the society that helped to shape that perception,
or may in the past have wanted it. We shall thus explore the impact
of perceptions of illness and signs of change in that area.
57. This again raises the question of the fairness of the social
system in which we live, and its presumed conception of autonomy
has massive effects on the community and the state, which must ensure
autonomy and participation of everyone, and not just the children
of rich parents who, having been massively sponsored from the start,
have been able to secure the few lucrative jobs the system offers,
and who also – of course – do best out of an economically determined
health system.
58. When illness is seen in a certain light, dying itself can
be a creative process. At the end, people who have given up on life
may succeed in doing something which, in their prime, they had increasingly
failed to do: form new relationships or put old ones on a new footing.
To that extent, the extreme situation of dying can even, in a higher
sense, be qualitatively better than a life paralysed by meaningless
routine.
3.2. Health systems: patient-focused
goal-setting
59. It is very important to explain the basis of palliative
care and make people see what autonomy means and how it functions
as patient autonomy. Only when we cast off certain prejudices will
we be willing to renounce resources that we think beneficial to
ourselves, in favour of those who really need them. The aim of rational
debate is insight. Unless many people have it, democracy ceases
to work.
60. Unlike evidence-based medicine, which concentrates on evaluating
the findings of clinical research, research on care has to consider
questions of appropriateness. Clinical research wants, for example,
absolute proof that a medicine works, but research on care looks
at its effects in everyday conditions. Often, clinical research
systematically ignores relevant everyday factors, or uses too few
test subjects to establish the presence of side-effects that appear
when more people take a medicine. The expert committee itself acknowledges
that the concept of appropriateness has not so far been appropriately
“put to work” in practice.
61. There is another factor with a vital bearing on palliative
care: it is a well-known fact that cost-benefit-quality calculations
are inadequately backed by evaluated research findings, and they
systematically leave out a factor that is, in practice, an important
quality indicator: the time available for each patient. When economic sums
are being done, time is factored in, with other variables, as one
of the things that determine effectiveness. Time is money. The most
time-saving means and methods are the ones that get used. In care
models that give patients the right to decide where they want to
be accommodated, time is uniquely important. There are thus very
good reasons for doubting that combining the various parameters
gives a good picture of the complex requirements of health care.
62. Care as a whole should aim to ensure, using minimum resources,
that patients are able to help themselves and, as far as possible,
lead normal lives. This rational rationing of medical treatment
is not primarily dictated by cost pressures on the system, but by
the desire to spare patients’ medically motivated interventions
and chain-reaction treatment, which can even prove fatal in extreme
cases, but usually make them permanently dependent on further treatment.
If good primary care made sure that patients saw specialists only
when this was medically necessary, everyone would have equal access
to them.
63. Taking the concept of autonomy as a basis and using the above
goals as a yardstick, the reform debate could be redirected. Since
both doctors and patients need to be more aware of quality and cost,
an important part of this would be reviving the cost debate as a
second element, for the purpose of allowing that awareness to develop
and influence their conduct. No additional checks and monetary incentives
are needed when autonomy underlies the process, which is not self-sustaining,
but requires action from both sides. False economic incentives would
be eliminated first, and not second as at present, for the purpose
of again making personal rationality – systemically misdirected
to start with – rational in terms of the system, under pressure
of costs.
64. Doctor-patient communication must be seen, and remunerated,
as an important first step in medical treatment. Care must therefore
be taken to ensure that it is not, in practice, a ritual dispatched
with minimum delay, as a prelude to the “real thing”, ideally based
on scientific findings and aimed at objective effectiveness. Patients
badly need independent counselling, particularly when their complaints
resist clear organic classification, and they have – perhaps – been
wandering for some time within the system. It is true that self-help
has generated some innovative structures in this area, but the extra
information available to patients on the Internet is not necessarily
good for the doctor-patient relationship.
65. No patient can want maximum medical care. But every patient
rightly wants maximum carefulness, and here there are serious problems,
partly owing to lack of time resulting from economic pressure. What
we have here is a vicious circle, and we need to break out of it,
instead of looking for ever new ways of controlling it. General
practitioners/family doctors could play a major part in defusing
numerous problems that are a source of conflicting interests and
huge difficulties for patients within the health system. In this
way, they would stop being gatekeepers, and become health-keepers.
66. Their practice could cover four important fields of action:
- independent health counselling
on possible causes of illness and treatment options, based on empirical quality
research and including information on specialists (out-patient/in-patient),
funding bodies, help available when public health insurers will
not pay, changing insurers, supplementary insurers, care options;
- primary prevention, since GPs are probably the first service
providers in the system to spot problems, for example, drug dependence;
- co-ordination of more complex forms of treatment or of
care required (GPs as case managers).
- medical activity in individual or group practices, for
example, in connection with palliative care.
4. Palliative care: co-operation
based on responsibility
4.1. The concept of care in palliative
care: rational goals
67. Before looking more closely at particularly important
aspects of care, some basic definitions, and types of palliative
care.
68. Home care generally means that patients are looked after at
home. As used in German, however, the term can also denote certain
forms of care provided at home for, for example, cancer patients,
and also food and blood transfusion programmes organised by firms
for home-care patients.
69. Hospice: the term is derived from the Latin
hospitum, meaning shelter, but also
hospitality. The concept dates back to the early stages in the spread
of Christianity in the Roman Empire, when hospices provided accommodation
and assistance for travellers, the poor, the sick and the dying.
In the 4th century, the institution spread beyond the eastern Mediterranean
under the leadership of monastic orders, who looked after pilgrims. It
was first applied solely to the provision of care and comfort for
the dying by Jeanne Garnier, who founded the first hospice in Lyons
in 1842, followed by others in France. Hospices were also founded
in other countries, sometimes a great deal later: Ireland in 1879,
the United States in 1899, England in 1905. Cicely Saunders, who
opened St Christoper’s Hospice in London in 1967, is regarded as
the founder of the modern hospice movement. In Germany, the first
residential hospice was not founded until 1986, in Aachen, although
the country has had a hospice movement since the 1960s.
In addition to the practical
task of looking after the terminally ill and dying, another, and
equally important, aim of the movement is to involve the public
in health care, and promote humane and helpful attitudes to dying.
70. Hospice work, hospice care: the four internationally recognised
criteria for hospice work are: hospice facilities are intended both
for the dying and their families; holistic support is provided by
a multiprofessional team; team members have special symptom-control
skills; and round-the-clock care is provided, nights and weekends
included.
71. Out-patient hospice schemes, various hospice and palliative
services: these look after the dying at home and cover a very wide
range of activities. Their primary task is to educate and inform,
and provide psychosocial support for the dying and their families
with the help of trained volunteers. Out-patient services, which
also have professional staff, can take on additional or specialised
counselling, nursing or medical tasks, and – depending on the extent
of their professional training – provide ongoing home care, which
helps to make hospitalisation unnecessary – even in complicated
cases.
72. In-patient hospice: an institution that lies outside the normal
intensive care circuit, is independently housed, funded and organised,
and has its own staff and approach. Smaller, family-type hospices
take, on average, 16 terminally ill patients, whose deaths are imminent,
who cannot be looked after at home, and who do not require treatment
in a hospital or palliative unit. They are thus seen as complementing
out-patient services and can, in principle, provide longer term
care. The atmosphere is deliberately non-hospital, rooms are bright,
and overnight accommodation and tea-making facilities are available
for families. The main emphasis is on pain relief, symptom control,
palliative nursing care, and psychosocial and spiritual support. This
is why staff should be specially trained and why, in many countries,
funding by public health insurance bodies is required. Medical care
can be provided by general practitioners or via co-operation with
pain treatment centres or doctors specialising in palliative medicine.
73. Day hospice/children’s hospice: many in-patient hospices have
day-care facilities, to relieve pressure on families or provide
medical services for people who basically want to be cared for at
home, but children’s hospices are separate institutions, which are
equipped to meet the special needs of seriously ill children, and also
specialise in supporting siblings. Length of care is one of the
things that distinguish them from adult facilities, since this starts
when the illness is diagnosed. In the case of seriously ill children,
care may extend over several years. This can cause serious financial
problems, in cases where public health insurance schemes refund
only minimum amounts. The data analysed so far suggest that, in
most countries, care provision for seriously ill children is very
much in deficit.
74. Multiprofessional team: terminally ill people can have physical,
psychological, social and spiritual problems, which are often mutually
aggravating. Comprehensive care should thus be able to rely on the expertise
of various professional groups. In palliative medicine, these include
specialised doctors and nurses, as well as voluntary workers and
colleagues from other healing and outside professions, for example,
social workers, physiotherapists, psychologists, clergy, etc.
75. Palliative care: the internationally accepted term, as defined
by WHO in 2002, for a holistic, multiprofessional approach “aimed
at improving the quality of life of patients and of their families,
who are confronted with problems accompanying a life-threatening
disorder, that is, by preventing and easing suffering as well as
by early recognition and treatment of pain as well as of other physical,
psychosocial and spiritual disorders”.
76. Palliative medicine: derived from the Latin pallium, cloak or protection. The
first “Hospital Support Team” was set up at St Louis Hospital, New
York, in 1974. The world’s first palliative unit was opened at the
Royal Victoria Hospital in Montreal (Canada) in 1975, and its founder,
Belfour Mount, was the first user of the term “palliative”. Palliative
medicine is the active, holistic treatment of patients with incurable,
progressive and advanced illnesses, whose life expectation is limited.
It seeks to relieve physical suffering, and also psychological,
social and spiritual problems. Its main aim is improved quality
of life for patients and also their families, who receive continued
support after the patient has died. In German, “palliative medicine”
also covers the English “palliative care”, and thus includes medical,
nursing and psychosocial care. In the strict sense, however, palliative
medicine is the essential contribution made by medical specialists
to palliative care.
77. Palliative therapy: by contrast, this strictly denotes treatment
that is intended to prolong life or improve quality of life, even
when curative effects can no longer be expected. In oncology, it
includes, for example, such cancer-specific forms of treatment as
chemotherapy, radiation therapy, hormone therapy and surgery. In medical
practice, palliative therapy and palliative medicine are not mutually
exclusive, and neither is support therapy, which is designed to
mitigate the side-effects of necessary treatment and minimise the
unpleasant effects of, for example, chemotherapy.
78. Palliative nursing: denotes the specialised nursing skills
and practices deployed in palliative care. Qualified voluntary assistants
are a vital part of the caring team, but benefit greatly from being
led by a specially trained head nurse. Their main tasks are to:
monitor pain relief and symptom control; take palliative nursing measures,
for example, change complicated dressings, operate pump systems,
etc.; direct and advise families on medical/nursing activities;
provide psychosocial support for patients and their families; help
them to cope with sickness and the process of dying; support the
bereaved; and advise on welfare law and help as required.
79. Palliative unit: a department in a hospital/nursing home that
specialises in treatment, care and support for palliative patients
with particularly complex symptoms and ailments. A characteristic
feature is again the presence of a multidisciplinary team, possibly
comprising – in addition to highly specialised medical, nursing and
also psychosocial staff – voluntary hospice assistants. Depending
on the patient’s needs, priority in these units may go to medical,
nursing, psychosocial or spiritual problems. Great importance is
attached to the organisation of co-operation and communication.
They are usually independent units, enjoying maximum autonomy, that
is, doctor and nursing staff are solely responsible for their patients.
Palliative units should be organised and led by specialised doctors,
pledged to inter-disciplinary co-operation. The particularly intensive and
personal care given patients not only makes for successful pain
relief and symptom control in most cases, but also ensures that
patients and their families receive comprehensive support. The aim
is to reduce distress caused by sickness and treatment, and – if
possible – stabilise the care situation to a point where the patient can
leave. Ideally, palliative units are networked with other institutions,
units or outpatient doctors, and sometimes play a co-ordinating
role in setting up networks. They provide an essential basis for
clinical research and for specialised initial and further training.
80. The special methodology of palliative care – the subject-focused
approach, which pain therapy and recent research on dying will be
used to illustrate – is a function of clear goal-setting, based
on close consideration of the patient and his/her environment. Medicine
as a whole still urgently requires evaluation of methods chiefly
focused on qualitative aspects – aspects that medical research is
increasingly acknowledging.
Epistemological
back-linking of qualitative research, of the kind that graded models
of human self-awareness make possible, is something that we shall
thus promote systematically here, particularly since illnesses like
dementia (and accidents too) provoke regression to rudimentary forms
of self-awareness, and since being able to form an accurate picture
of their patients’ level of self-awareness can be vital for those providing
treatment.
81. Pain is subjective. Research on post-operative pain therapy
has shown that patients whose pain has the same physical cause (for
example, an abdominal incision) need painkillers in hugely varying
quantities to achieve satisfactory pain relief.
Since there are no objective criteria for
measuring intensity of pain, assessment is based on the patient’s
description and on the effects of pain-relief measures taken earlier
or just started by the doctor. Numerical and visual analogy scales
can be helpful in recording and documenting subjective pain intensity.
Patients enter their pain on a scale running from 0 (no pain) to
10 (worst pain imaginable).
82. At present, we have only indications and estimates concerning,
for example, frequency of cancer pain. However, these reflect enormous
variations. At the early stage of the illness, some 20% to 50% of
patients report pain, at the advanced stage 60% to 95%.
Using
present techniques, 90% could be treated successfully, but in practice
this often does not happen, either because the expertise is lacking
or because the pain’s intensity is underestimated, and so-called
weak opioids
are prescribed.
Prejudice against painkillers still has strong determining effects,
and pain treatment is time-consuming, since constant monitoring
and communication are needed to get the dose right. Morphine-type
medicines are also relatively expensive.
83. There are various pharmacological ways of influencing pain,
depending on where it originates: intestinal pain must be treated
differently from pain directly or indirectly caused by factors irritating
or otherwise affecting the nerve paths or central nervous system.
Diagnosis of the illness is not enough to determine the type of
pain. This is one of the reasons why specialisation is important,
and indeed necessary.
84. Also responsible for failure to diagnose pain correctly are
prejudices – still widespread even among doctors – concerning the
effect of powerful painkillers. International experience of cancer
pain treatment indicates that morphine-type medicines, if properly
used, will not turn patients into addicts or make them resistant
in ways that will necessitate constant increasing of the dose. Nor
do they accelerate the dying process. Everyone knows that painkillers
are not the only medicines that may do harm if the dose is incorrect. When
used, however, they must be constantly monitored and adjusted by
the doctor until the patient dies. An IAPC task force recently published
a list of 33 medicines for 23 different symptoms, which provides
a very useful basis for further discussion.
85. It is true that Germany is one of the countries where morphine
is increasingly prescribed, but we must assume that care provision
for patients in pain is still extremely inadequate. Consumption
rose from 0.8 kilograms per million inhabitants in 1985 to 17.7
kilograms per million inhabitants in 2002 – but the estimated need
is 80 kilograms per million inhabitants.
Partly owing to powerful prejudice,
real progress can be expected only when the community sends a clear
signal in this area, and when painkillers for patients with chronically
painful conditions are not funded like other medicines, for example,
from budgets, as in Germany. Doctors may still be insufficiently
informed, and there is a danger that reversal of the trend may be
called for.
86. Even medicinal freedom from suffering is not a universal goal.
Coping with pain from early childhood on may itself be part of a
person’s self-image or an upbringing based on endurance, not avoidance.
Levels of tolerance are deducible from this sociology of pain, which
we need to ascertain individual perceptions.
87. A decisive figure for the theory of hospice care (and not
just in Germany) is the American-Swiss doctor, Elisabeth Kübler-Ross,
who did pioneering research on dying. With students of theology,
she interviewed dying patients and formulated a five-stage model,
which must be carefully interpreted when applied in specific cases. The
five stages she distinguishes are: 1. denial; 2. anger; 3. bargaining;
4. depression; and 5. acceptance.
88. Hope remains at these stages, but its focus shifts: from hoping
for a miracle, for discovery of a new treatment, to hoping for a
pain-free death. The central point is her vision of dying as a process,
which takes a different course with each patient. In accompanying
the dying, her model is extremely useful, since it makes the human
emotions involved comprehensible. Helpers should not attempt, however,
to accelerate the dying person’s progress towards the final phase.
They are simply there to offer support. The real work must be done by
the patient.
89. Critics who complain that the five-stage model takes insufficient
account of individual peculiarities are missing its methodological
significance. Idealisation takes individual cases and distils from
them an abstract generalisation, which must then be re-individualised
when applied in practice.
In
their design and use, models like this do not require a basis in
exhaustive empirical data to be generally applicable. Admittedly,
there is one thing the subject-focused approach cannot do: let others,
for example, professional service providers, do the subject’s work
for him/her.
90. Subject-focused research does not aim at comfort medicine.
It requires exceptional communication skills, which users can acquire
only by practising the art of self-scrutiny, for example, by reflecting
on their own values. They cannot really help others to negotiate
complex subjective processes if they themselves start from a reductive
world view.
91. To start with, the significance of communication and its theoretical
foundations was ignored in the basic training provided for palliative
carers. Today, it is on every curriculum. This is definitely not
a skill that is automatically acquired on the job, or constitutes
an “optional extra”. Indeed, most of the problems in palliative care
are due, not to medical/nursing mistakes, but to poor communication.
Communication skills are a necessary and important part of all health
care, and this should ideally be allowed for in palliative carers’
basic training. This is why the team approach works better, and
why it quickly won acceptance in particularly hectic areas of everyday
clinical practice, for example, intensive care.
92. Sensible goal-setting is palliative medicine’s starting point: length
is no adequate indicator of a human life’s quality, since the time
gained by treatment may, under treatment conditions, be a time of
futile suffering. Psychologically, it resembles time spent sitting
in the death-cell, where the prisoner has no idea whether, and when,
the execution will actually take place. Using a purely quantitative
yardstick, length of life may involve a total loss of quality and
become grossly inhuman – leaving the patient indefinitely suspended
between hope and fear. Being treated for something that cannot be
cured is purgatory on earth. Rescue is unlikely, and suffering is
certain, but probably futile, and stops the patient from finding
inner peace – or spiritual “salvation” in the broadest sense of
the term.
93. Deliberately refusing further curative treatment rewards the
patient with living time that he/she can shape meaningfully. Autonomy
brings new scope for action. When symptoms are effectively controlled,
the seriously ill can focus on things that have real meaning for
them. Only when these new possibilities are constructively used,
does quality of life become a reality for them and for their families.
This is why, even in palliative care, quality of life is a doubtful
concept. It is not the service provider, professional or not, who
guarantees success, but the patient alone. The initial benefit –
a new dimension of meaning, in and through medicine itself – is threatened
if quality is ranked above professional requirements, only to be
filled once again with quantitative calculations.
94. Obviously, universal provision can be quantified, and standards
of medical practice are a yardstick for quality of care. If symptoms
cannot be effectively controlled, the necessary scope for action
is not there. As we have shown, however, being taken care of is
not an end in itself; the autonomous subject is the end in itself, and
seeking help is the precondition of the real aim: successful incorporation
of dying within one’s own life-plan. Accompanying the dying is helping
them to live.
95. The distinction between palliative medicine and palliative
or curative therapy is thus very important, but we must not conclude
that one excludes the other. On the contrary, the patient benefits
greatly if the palliative approach is adopted from diagnosis on,
as it usually is in children’s hospices. Medicine’s ability to limit
itself is the source of a potential that takes it far beyond the
boundaries of a specialised discipline. In practice, patients themselves
set the course, and it is only when they stop looking hopefully
to therapy that new meanings can emerge and acquire significance
for them.
96. The practical aims of care should be based on setting sensible
goals to start with – otherwise, ends and means will again be surreptitiously
reversed by professionalisation/specialisation. Aims defined in
merely objective, professional terms are no adequate yardstick for
deciding whether the means employed are the right ones.
4.2. Care with indicators: countries
compared
97. The great variations in the development of palliative
care in individual countries are due to various factors, which must
be carefully distinguished to ensure that thorough assessment does
not miss its mark. Nearly all possible indicators must be based
on a distinction between things said in public discussion and practical
measures taken by governments, for example, in the sphere of health
policy. A vigorous community-based hospice movement certainly says
something about the public’s commitment and awareness, but is no indication
of the quality of the care actually provided.
98. Swedish policy, for example, was consistently geared to out-patient
rather than hospital care from a very early stage, which is why
patients and their families take free nursing care at home for granted.
Families caring
for patients at home are also given financial help with holidays.
Voluntary commitment is insignificant in Sweden and all the Scandinavian
countries, but this does not mean that care is generally seen as
a matter for experts. Similarly, Spain traditionally attaches great
importance to family care, while hospices have a very negative image
as places where people are packed off to die.
99. On the government side, various strategies can be identified:
some, like those of Sweden, the Netherlands and Belgium, may be
aiming at rapid implementation within the existing system: this
policy is consistently pursued only when care is as fully integrated
as possible, and the means used to promote it are not exclusively
focused on specialisation of doctors or hospitals, as the tendency
is in France.
100. This strategy covers rapid implementation and possible funding
via existing structures, as well as the parallel promotion of palliative
care through separate budgets, as in Belgium. It must be distinguished
from legislative strategies with no permanent funding base, which
may be purely inspirational. This is the situation in Spain, following
the government’s whirlwind decentralisation of health policy. Care
is now good only at regional level, and state involvement has ceased.
101. In Switzerland too, the poor state of care is blamed on sweeping
decentralisation. The prevailing attitude among many professionals
is described in a report issued by the Société de Médecine et des
Soins Palliatifs in 2000 as failure to take the new specialism seriously:
“we all know what palliative care is”.
102. An important indicator is whether structures are radically
adjusted, when this is necessary to fund palliative care in the
long term, or whether the changes remain superficial. This is the
situation in Germany, where a legal right to out-patient palliative
care has at least been entered on the social statute book, but complex
forms of care are still not properly remunerated in practice. A
serious problem in Germany is the fact that incentives for integrated
care do not apply to all the funding bodies, but start with the
service providers, while the funding bodies, for example, health
insurance schemes, are expected to compete with one another.
103. These conflicting incentives have a particularly damaging
effect on palliative care, even though state subsidies are now being
provided, for example, for the co-ordination of existing professional
teams. The complexity of mixed funding – by health insurance schemes,
care schemes, state subsidies, donations and patients themselves
– has stopped it from having any ongoing effect on continued development
of care provision.
104. And yet the concept of palliative care is very much in line
with the changes needed to bring more co-ordination and responsibility
into the German health system, described by the expert council in
its current opinion: a new self-image for the various professional
groups, easing of the burden on doctors and elimination of a blinkered
professional mindset, inclusion of care on an equal footing. However,
since consolidation of funding structures and basic reform of care
have both been postponed in Germany, it looks as if comprehensive
health reform will have to wait until after the next election, in
2009.
105. Even though fewer countries in eastern Europe have in general
set out to develop palliative care, there are no signs of an overall
difference due to shortage of resources.
On the contrary, it is impressive how efficiently
a high level of expertise, accompanied by networking, has been achieved
in five skill centres (so-called beacons) in Romania, Hungary, Russia
(one each) and Poland (two). These centres offer excellent care services,
provide training and further training, do research, maintain international
contacts and engage in political lobbying. Palliative medicine and
hospice work in Poland are regarded as exemplary for eastern Europe.
106. Not the least reason for this is the fact that palliative
medicine has been successfully integrated in university courses.
Of the 12 medical schools in Poland, 11 offer courses in palliative
medicine – optional in three, compulsory in the others – though
not always as a separate subject. There are six chairs of palliative medicine,
which is not in itself a specialised branch of medicine. However,
the extensive further training course – open only to doctors who
already have specialised training – had been taken by 55 doctors
up to 2004.
107. Germany has adopted the opposite strategy: there are only
two chairs, but specialised training is available. Since doctors
are poorly paid, there is little demand for further training, although
there is, generally, considerable interest among German GPs. Here
again, we see that great potential can produce very small results,
in spite – or indeed because – of the politicians’ energetic efforts
to keep costs down.
108. A broad range of further training is also available in Poland.
Since 1991, a co-operative scheme, the “British Charity – Polish
Hospices Fund”, has been playing an important role in the further
training of Polish doctors and carers. These can spend time in many
British hospices and receive further training there. Their stays
are subsidised by the fund. The value of its work for palliative
medical care in eastern Europe should not be underestimated. High-level
advanced seminars, organised by the Palliative Care Department in
Poznan and the WHO Centre for Palliative Care in Oxford, are also
on offer in Puszczykowo. The Palliative Care Resource and Training
Centre in Poznan runs theoretical and practical courses for medical
staff (also from other European countries). Even though funding
remains uncertain, it is a further example of effective international co-operation.
109. The main problems reported from eastern Europe make it clear
that the situation there is not entirely different from that in
the countries of the west: “lack of policy recognition, reimbursement
and sustainability; insufficient availability of opioids; recruitment
of workforce; lack of medical and nursing equipment; lack of research
opportunities; negative cultural stereotypes”.
110. Hungary has had a targeted government strategy since 1997.
The Health Care Act refers explicitly to palliative care, and establishes
a right to symptom control and life with one’s family; home care
is to be provided when possible, and support for families is also
specified. The Hungarian Ministry of Health has published professional
guidelines with the Hospice-Palliative Association. The ethical
principles, which explicitly raise the question of allocation, are
notably strict.
111. Co-operation on palliative care in the interest of patients
and their families involves decision makers: patients/families/voluntary
workers/professionals/specialists in structures of all kinds: out-patient/in-patient/comprehensive/networked.
Isolated units have major organisational, financial and functional
problems, and co-ordination is a job in itself. It has been found,
for example, that largely unspecialised services are often unable to
judge when outside expertise is needed. Communication becomes far
more of a challenge as the number of people involved increases.
Structures as complex as this need a long time before they can function
really well.
112. Country-wide care provision can basically be taken as a good
sign, but is no guarantee per se of sufficient professionalisation
or specialisation. Taking another example, care for cancer patients
which is good only at regional level, or is merely specialised,
is no indication that things overall are moving in the right direction.
This is an area where sustainable funding, and ongoing development
and expansion, are always desirable.
113. In many respects, Great Britain is, of course, the country
with the most highly developed structures and, in many areas, exceptionally
well co-ordinated co-operation.
But
funding is largely based on donations and voluntary commitment.
Time will show whether this is sufficient in the long term.
114. The most important indicator of patient autonomy remains place
of death, although this – as we have said – is conclusive only when
we know where the patient wanted to die, where he/she actually died,
and the reasons for this. This kind of data will not be so easily
come by. A decline in demand for euthanasia will also be ascertainable
only via opinion polls – if the empirical, quantitative approach
is adopted. The first, encouraging findings of research on the significance
of doctor-patient communication are now available.
115. Country-wide, permanently funded co-operation between service
providers with varying degrees of need-tailored specialisation,
in the interest of patient autonomy, would be the ideal outcome
(for which an indicator is being sought) of health policy efforts.
Political efforts aimed at continuous growth and development can
be measured by three indicators: Is there a right to palliative
care? Is there data-based analysis of needs? Are there a contradiction-free
political strategy and official standards?
116. A still more basic question is whether health policy ranks
health goals in order of importance, what the order is, and whether
it is broadly accepted by the public. Unless the general goal is
clearly defined, all the more specific sub-goals will not ultimately
survive. On the other hand, a plan based on sensible goals stands a
good chance of also being accepted by most members of the public,
since “generally binding” means binding on all, not just most. In
Germany, it would be an excellent thing if wearing, ideological
squabbles between interest groups gave way without delay to ethical
debate.
117. Possible indicators of the palliative care movement’s vitality
in Europe are: the existence of palliative care associations; printed
or Web-based directories or monographs listing available palliative
care services; articles in scientific journals on the development
of palliative care; professionals taking part in palliative care programmes.
Other indicators include:
- discussion
as to whether implementation in the existing health sector would
be a good thing (preconditions of successful integration);
- funding basis (sustainable concepts);
- saturation health care/broad access/flexible structures
(for example, cross-sectoral co-operation; phased concept; and general
and specialised palliative care);
- patients’ interests/quality of life/autonomy (choice of
place of care and of death);
- quality of care (access to drugs/quality standards/evaluation
or process optimisation/co-operation and communication);
- incorporation in training regulations (multi-step approach;
and inclusion of the nursing sector);
- research.
4.3. Quality of care provision:
appropriateness of aim and means
118. The specific shortcomings which, in widely varying
health systems, have negative effects on the development of complex
forms of care like palliative care are:
- the suppression of death and dying in medical training
and practice, palliative medicine and communication is not covered
in the training given doctors and nursing staff. The subject-oriented approach,
which is really needed, has still not won systematic scientific
recognition. Communication is accordingly seen as a social skill
to be acquired in practice, and not as an approach to treatment
and research requiring systematic cultivation, and having major
importance outside the individual doctor-patient relationship;
- sectoral division of medical provision and funding, and
also a specialisation powerfully encouraged in the past, are responsible
for the fact that, in a climate of increasing competition, networking
and trans-sectoral, interdisciplinary co-operation in the patient’s
interest do not come about. Trans-sectoral forms of care provision
are undoubtedly badly needed, but are not suitably remunerated in
many existing systems. Health policy must accordingly aim at comprehensive
integration, which includes funding bodies, and must not be restricted
to service providers;
- the funding structures of health care provision are strongly
focused on curative and high-tech medicine, with the result that
palliative medicine’s high person/low technology approach, and adequate psychological,
spiritual and emotional support, are insufficiently funded (more
is paid for chemotherapy than for palliative care); another economic
constraint, which tells against palliative care, is the way in which
medicines are budgeted: expensive symptom-control medicines are
not used;
- increasing pressure of time, resulting from extra administrative
outlay (quality assurance) and economically induced staff shortages,
is not seen as a structural problem. Nonetheless, it has direct effects
on the quality of the care provided: no time is left for proper
communication and human support; there are serious mistakes, for
example, in medication which, owing to lack of data can only be
corrected later, and so again increase administrative outlay (see
the current discussion of patient safety indicators).
119. Basically, three levels of qualification can be distinguished
in palliative care (non-specialised basic knowledge; enhanced basic
knowledge; specialised knowledge), which should be made compulsory
in the training and further training of doctors and carers (care
of the sick and the old), and which should in practice (specifically
including support for the bereaved) be available country-wide, as
required.
120. In practice, it should be assumed that, in addition to institutional
facilities of the kind provided by hospitals, nursing homes and
hospices, non-specialised palliative care must be generally available,
if people are to have a basic right to die at home. For a smaller
number of people with more complex symptoms, specialised out-patient
teams, either acting simply as advisers, that is, supporting non-specialist
colleagues, or themselves providing care, will also be required.
For an even smaller number, highly specialised palliative medicine
will be needed, for example, within the context of networked palliative
units based on hospitals. In addition to dealing directly with unusually
complicated cases and acting as co-ordinators, these have the vital task
of providing specialised practical training and undertaking research.
121. Possible indicators of an adequate care structure include:
- number of hospice/palliative
care beds per million inhabitants (approximately 50 per million
in the United Kingdom, which is also the estimated demand in Germany);
- number of out-patient services per million inhabitants
(estimated at approximately 4-8 for Nordrhein-Westfalen, while the
Act on Safeguarding Competition (Wettbewerbssicherungsgesetz) is
based on some 24-32 full-time posts per million inhabitants);
- access to other categories of interdisciplinary and multi-professional
counselling for patients and relatives (for example, by psychologists,
social workers, pastors, etc.);
- integration of voluntary workers into palliative care
on the basis of suitable co-ordination structures (in Germany, posts
for out-patient hospice service co-ordinators are funded under Social
Code V);
- appropriate funding provision for a country-wide system
of out-patient services; funding of co-ordination and networking
also planned;
- quality assurance based on, for example, a minimum data
set, a standardised documentation system or other measures, such
as auditing (as already called for in Committee of Ministers Recommendation Rec(2003)24);
- palliative medicine established as an academic discipline
(university chairs, part of the curriculum for medical students);
- palliative medicine as a separate discipline in medicine
and nursing (specialised doctors and nurses).
4.4. Team care: professionalisation
of society
122. Palliative care’s innovative potential will thus
require careful analysis in this report. The main reason for this
is not the obvious potential it shares with all other specialised
professional sectors, but its holistic approach, drawing on knowledge
from a wide range of disciplines in the patient’s interest, and
its working method, which is based not just on inter- and multi-professionalism,
but also on tapping other community resources.
123. In palliative medicine, for example, treatment is not based
on set objectives, but on goals agreed with the patient. The result
is a flexible approach, involving continuous communication with
patients and their families, which could serve as a pattern for
other types of medical care. Improving the doctor-patient relationship
makes the patient more compliant – which may then have significant
effects on success of the treatment.
124. The patient is seen as a whole person, and his/her family
and social context are also part of the picture. In other words,
he/she is not seen as a body or part of a body, and made the object
of some necessary therapeutic measure, but remains a subject, embedded
in a specific social milieu, which may contribute significantly
to care, or itself require help, because of his/her serious illness.
125. Palliative care is based on a complex vision of health and
disease. In addition to the possibilities of progress offered by
medical technology, which are still foremost in the public mind,
and public health issues (healthy workplaces/poverty and health
risks), which are worked on using mainly quantitative methods, palliative
care introduces a new concept of quality, which also incorporates
the patient’s subjective perceptions.
126. When dementia, which presents the community with a real challenge,
is discussed, the emphasis laid on rational, cognitive skills in
connection with autonomy and self-determination is frequently criticised
– with the inevitable result that people with dementia are devalued,
marginalised and no longer regarded as persons in the full sense.
When this happens, no distinction is made between their taking decisions
and decisions’ being taken for them. Blurring things like this makes
it impossible to distinguish the core area of basic rights – the place
where autonomous decisions are really taken – from the far broader
area of personal rights, which may be age-dependent (like civic
rights), or connected with a profession and implying specifically
professional rights and obligations.
127. One helpful approach might be to regard autonomy, not as a
statistical quantity, but as a potential acquired during life. People
need wide-ranging support to cope with the final phase of life.
In addition to the step-by-step approach currently followed in improving
palliative care structures in various European countries, an effort
must be made – in the medium and long term, and if the available
services are to be extended to people who are not seriously ill
– to develop patients’ personal potential and increase their ability
to act independently.
128. Many studies devoted to the problem of dementia and autonomy
suggest that more attention should be paid to the need for help
and to acceptance of dependence, and less to self-determined rationality,
but this misses the real problem, if the necessary distinction with
so-called “dysfunctional dependence”, which is primarily created
(or at least accentuated) by institutional practices, is ignored.
As a result, abilities still present are systematically overlooked,
and institutional care becomes a threat to dignity, since people
are generally seen as requiring more help than they really need
or want. This is why the whole problem of age and dignity calls,
not for a fresh look at the individual autonomy of people in need
of care, but for more self-scrutiny and communication on the part
of professionals, who must force the existing system to give them
– and those people – more autonomy.
129. Society as a whole has a duty to see that the general conditions
of care are such that the team providing it can reflect on what
they are doing, communicate and spend time on rehabilitation. “Doctors
and carers not infrequently land in situations where they can no
longer make specific ethical principles the central basis of their action.
… When personal integrity is violated by having to ignore ethical
principles, this leads to feelings of guilt, and ultimately profound
self-doubt and an inclination to give up the job. This is why it
is not just a matter of inculcating ethical principles in training,
but also – and above all – of creating working conditions which
allow a ‘morally acting community’ to come into being.”
130. A broad range of help is required to preserve autonomy in
the last phase of life, when the people concerned need complex assistance.
Alongside the present step-by-step approach to improving palliative
care structures in various European countries, it will be necessary
– if care is extended to people who are not seriously ill – to increase
patients’ own responsibility and personal potential in the medium
or long term.
131. The basic idea in palliative care, that is, that revitalisation
and rehabilitation can make a major contribution to the quality
of life of people who are seriously ill, can be expanded to include
specifically preventive measures, and this involves showing people
the direct health benefits that their own efforts may bring. The
Latin root, pallium (coat),
graphically conveys the concept of protection. People must also
be protected from themselves. Empowerment, coaching and co-operation
motivate more effectively than old-style authoritarianism, compulsory
preventive check-ups, the threat of sanctions, or cheap moralising.
132. The report on Committee of Ministers Recommendation Rec(2003)24
rightly emphasises the importance of voluntary helpers, which is
often underestimated. Voluntary helpers are not themselves enough,
but are necessary for the system to work. They reduce costs by saving
specialists’ time. Another important aspect is active solidarity
(the investment of time instead of money), which strengthens the
sense of community and increases personal responsibility.
133. The support given by the working section of the community
was an important and even driving force, both in the pioneering
phase and for the further development of palliative care. In Germany,
the relationship between palliative medicine and the hospice movement
had been tense for many years, but intensive efforts on both sides
have recently led to improved co-operation. In other countries,
too, only a well-balanced system promises success. Co-operation
between a professional, semi-professional and private sector is
urgently needed in the patients’ interest, functions excellently
if carefully planned, and must not be regarded as a stopgap dictated
by lack of resources. On the contrary, it is the life and soul of
the concept.
134. In future, more thought will have to be given to mutual “advantages”
for care-recipients and carers, since voluntary work in its present
form will soon be phased out. In nearly all countries, voluntary
workers are mainly women in their 50s to 70s, who conform to the
traditional role model by giving their children and family priority over
their own professional development. In nursing care, too, people
in this category still bear the brunt without receiving any adequate
support or compensation, for example, in respect of still unpaid
pension contributions. This structural injustice is, of course,
part of the public debate – but hardly any appropriate political
action has been taken so far.
135. Statutory unpaid leave for care-providing relatives, of the
kind that exists, for example, in Sweden, France and Austria, is
highly desirable, but is rarely taken, probably for financial reasons
or because those concerned are afraid of losing their jobs, even
though dismissal is prohibited.
It
is already foreseeable that women will no longer be prepared to
engage in thankless altruism. The birth-rate figures speak clearly.
With a view to guaranteeing care of the old and palliative care
in the long term, we also need to consider the risk that other social
institutions (for example, churches) may scale down their involvement.
Political concepts worked out in the context of voluntary service,
civic commitment and demographic change also play a major part in continuing
implementation of palliative care, and must be further pursued.
136. In the field of palliative care, participation is not just
a label, but a vital element in day-to-day work. In fact, this concept
represents the major cultural challenge for liberal societies pampered
by prosperity, and it is becoming apparent that being entitled to
participate helps us to meet such societal needs as the need to
nurse and care for one another. Excessive professionalisation and
dependence on public funding are thus risks that the German hospice
movement rightly perceives and denounces very clearly.
137. One area to which palliative care might usefully be extended
– apart from nursing and caring for the chronically ill – is addiction
treatment. A drug policy that is not focused on attacking the root
causes, but simply on combating individual addictive substances,
will probably only mean robbing Peter to pay Paul. Stress, inability
to cope with excessive demands and lack of a role in the community
are seminal causes of addiction. Palliative care has paved the way
for sensible handling of addictive drugs and can thus contribute
established expertise and appropriate practical measures to the
treatment of addicts, and to prevention. Former addicts might prove
useful partners for co-operation in this field.
138. Approaching this problem rationally thus holds the key to
solving it. Prohibition and punishment are the irrational reflexes
of impotent lawmakers, and at best provide temporary protection
for people who are not yet addicts, although they have started on
the path to addiction – and they offer no help against the causes.
139. Harnessing the innovative potential of palliative care as
an appropriate approach to treatment and care, while giving basic
rights priority over personal rights, depends on the whole community’s
getting involved, and on making medicine in the narrow sense part
of the process. Medicine and nursing care are important co-operation
partners, but they cannot act in the community’s stead, relying
solely on their specialised skills. Care as a professional service
cannot be totally funded via insurance, and this approach must in
fact be rejected as totally counter-productive, since the “customer”
and “claim” mentality of the insured person undermines solidarity
in a far more basic sense.
140. Individual freedom and autonomy come from exercising responsibility
which is shared with other people. This is why, when the aim is
more responsibility and co-operation in the health system, it does
not matter whether responsibility is exercised in a professional,
voluntary or private capacity. Whatever happens, it is the type
of co-operation involved that determines the individual’s ability
to make his/her contribution in an appropriate manner: autonomy
is possible only in the context of shared responsibility for other
people. Both in theory and practice, palliative care is thus a matter
of shared responsibility and of professional back-up, which is available
as and when the individual needs it.
141. When it comes to modernising structures, to make them more
flexible and tailor them to individual requirements, Germany is
a long way behind. The system’s performance will have to be measurable
by this very yardstick: quality is the product of time made available
by professionals or other people (private individuals/voluntary
workers). Quality is not the product of mere cost-benefit efficiency,
which involves reckoning time in terms of money – as we have seen,
a serious mistake in economic theory, and one that has disastrous
effects, not just on the health system, but also on the whole social
insurance system. Looking ahead, this forces us to ask: can we afford
to go on getting our sums wrong?
4.5. Dementia – The challenge
142. A general pathologisation of old age has, paradoxically,
been the result of increased interest in research on Alzheimer’s,
even though that research has opened the way to sophisticated diagnosis,
making it possible to distinguish a “normal”, age-related decline
in cognitive ability from a typically progressive disease, regarded with
great alarm by the public. This has a lot to do with the inherent
dynamics of science, and with the effects of economic incentives
to develop medicines. This is thus an area where, far more than
in the case of palliative care and in addition to questions of allocation
and the admissibility of active euthanasia, some ethically crucial issues
arise: research on patients unable to give their consent, and legal
restrictions on genetic diagnosis.
143. In hard figures, this means that approximately 1 million people
currently have cognitive impairments that can be ascribed to various
forms of dementia. In 2000, there were 12.2 million over-65s in
Germany (in 1900, the figure was 3.2 million). It is estimated that
the figures for dementia will have doubled by 2030, and that there will
be 16.9 million sufferers in 2050. The figures vary with the risk
scenarios on which they are based. There is thus nothing really
striking in the statement that ageing is the chief risk factor in
dementia. This follows logically from the fact that modern medicine,
though frequently unable to cure them, can keep the sick alive.
144. In short, it can be said that the real figures do not suggest
a frightening scenario, for example, “scourge of the 20th and 21st
centuries”, “exploding patient numbers”, “ticking time bomb”. Nonetheless,
we obviously need to look ahead and decide how to guarantee care
in the future. However high the eventual figures may be, the institutional
solution – homes – is unaffordable, and most of those surveyed do
not want it.
5. Looking ahead: prospects for
a rational Utopia
145. The debate on rationing of care should involve the
whole community and not be reduced and confined to the doctor-patient
relationship. The fact is, however, that early medicinal treatment
of Alzheimer’s is not the only desideratum or option. Care that
stimulates and preserves autonomy is time-consuming and thus costly, and
should be given priority if, in discussing allocation, we argue
from basic rights, which take precedence over more far-reaching
(personal) rights. I regard early diagnosis, like the whole debate
on genetic diagnosis, as highly problematical in the absence of
a preventive strategy or genuine causal therapy.
146. A sensible utopian policy is to make health the focus of co-operative
effort, involve as many people and groups as possible, and together
pursue the goal of maximum autonomy with and for those who are obliged
to live with physical or mental handicaps or incurable diseases.
That life goes on until they die, and we should beware of trying
to decide, for ourselves or for others, what does or does not constitute
a life worth living.
147. Ethics is a theory that is practical in its own terms. The
very concept of applied ethics, for example, bioethics, reflects
a misunderstanding of its nature. We do not need applied ethics
– we need to learn again how to use ethics properly. Ethics are
realised in action, not by being used instrumentally to provide justification,
soothe consciences, lay claim to exalted values, or serve as a fig-leaf.
However, for ethical action or ethically demanding action strategies,
such as palliative care, the basic conditions must be right. Making sure
that they are is a job for the state.
148. Ethics plays a vital part in the setting of sensible goals,
since it ensures, as a philosophical discipline, that the goals
are clearly ranked, without being restricted in their content, which
can vary greatly between cases. Culturally, the same is true of
different peoples: there are various laws, traditions, etc. Setting
goals formally is the only way of making them generally binding.
Not all goals whose content can be determined, and which may even
command majority support, are sensible. The true yardstick of a
goal’s general validity is not majority acceptance, but reason.
That is why ethics is vital for politics, even though decisions
in democracies are taken – for pragmatic reasons – by the majority.
149. Science, on the other hand, wants its research findings to
be objective. Scientific objectivity also attempts to satisfy the
criterion of general validity, but is usually prevented from doing
so by the empirical nature of its procedure, since the necessary
data are lacking. Here again, ethics and epistemology can make a
very useful contribution – provided that the sciences think more
about the methods they employ, and seek real co-operation with other
disciplines, for the purpose of acquiring new knowledge.
150. Alzheimer’s research clearly shows that a mechanistic conception
of causality does
no justice to the complex processes within the human body – quite
apart from the fact that reductionism can give no adequate account
of the whole human being, in his/her physical, mental and spiritual
dimensions. An organism is not a mechanism. Its “functioning” is
based on self-organisation and can be explained only by assuming
that all natural processes are purposive. Human genetics suffers
as a whole from being seen in simplified, mechanistic terms – which
makes it self-limiting. An arrogant faith in one’s own methods is
no guarantee of progress, even when interested groups make huge
sums of money available for research.
151. Political philosophers often quote Kant’s observation that
even a race of demons could establish a state system based on rational
legal principles, if they had enough sense. Perhaps we are on the
way to becoming such a race of demons with – alas – too little sense.
But perhaps we may achieve a new sense of humanity’s influence on
action, and see that the law can now develop in one of two directions
– either eroding the basis it provides, as the current ranking of
personal over human rights is doing, or evolving rationally. We
will get targeted evolutionary development only if we rely on the
ethical principles that gave rise to our law-governed state, instead
of dismissing them as poetic hyperbole – as happen in discussion
of Article 1, paragraph 1, of the German Constitution, which makes
human dignity the supreme legal principle.
152. The automatism we introduced in the name of supposed objectivity
and economic laws, relying on the non-self-fulfilling prophecy of
the greatest possible happiness of the greatest possible number,
is no longer functioning as it was meant to. And it is not making
many people rich and happy – on the contrary, it may well be making
many people poor and sick, and finally robbing them of dignity too.
Indeed, human dignity is an endangered commodity: without citizens
who have a liberating vision of society, who stand up for that vision and
make it a reality through active, collective commitment, that mutual
respect, which is the basis of freely taken decisions and of dignity,
will be lost. Autonomy is not automatism.
____________
Reporting committee: Social, Health and Family Affairs Committee.
Reference to committee: Doc.
10775 and Reference No. 3206 of 17 March 2006.
Draft resolution adopted by the committee on 15 September
2008.
Members of the committee: Mrs Christine McCafferty (Chairperson),
Mr Denis Jacquat (1st Vice-Chairperson) (alternate: Mr Yves Pozzo di Borgo), Mrs Minodora Cliveti
(2nd Vice-Chairperson), Mrs Darinka Stantcheva (3rd
Vice-Chairperson), Mrs María del Rosario Fátima Aburto Baselga,
Mr Francis Agius, Mr Konstantinos Aivaliotis, Mr Farkhad Akhmedov,
Mr Vicenç Alay Ferrer, Mrs Sirpa Asko-Seljavaara, Mr Jorodd Asphjell, Mr Lokman Ayva, Mr Zigmantas Balčytis, Mr
Miguel Barceló Pérez, Mr Andris Berzinš, Mr Roland Blum, Mrs Olena Bondarenko, Mrs Monika Brüning,
Mrs Bożenna Bukiewicz, Mrs Karmela Caparin, Mr José Carracao Gutiérrez,
Mr Igor Chernyshenko, Mr
Imre Czinege, Mr Karl Donabauer, Mrs Daniela Filipiová, Mr Ilija
Filipović, Mr André Flahaut, Mr Paul Flynn, Mrs Pernille Frahm,
Mrs Doris Frommelt, Mr Renato Galeazzi, Mr Henk van Gerven, Mrs
Sophia Giannaka, Mr Stepan Glăvan, Mr Marcel Glesener,
Mr Luc Goutry, Mrs Claude Greff, Mr Michael Hancock, Mrs Olha Herasym’yuk, Mr Ali Huseynov, Mr
Fazail İbrahimli, Mrs Evguenia Jivkova, Mrs Marietta Karamanli,
Mr András Kelemen, Mr Peter Kelly, Baroness Knight of Collingtree,
Mr Haluk Koç, Mr Andrija
Mandić, Mr Michal Marcinkiewicz, Mr Bernard Marquet,
Mr Ruzhdi Matoshi, Mrs Liliane Maury Pasquier, Mr Donato Mosella,
Mr Felix Müri, Mrs Maia Nadiradzé, Mrs Carina Ohlsson, Mr Peter
Omtzigt, Mrs Lajla Pernaska, Mrs Marietta de Pourbaix-Lundin, Mr
Cezar Florin Preda (alternate: Mr Laurentiu Mironescu),
Mrs Vjerica Radeta, Mr Walter Riester, Mr Andrea Rigoni, Mr Ricardo Rodrigues, Mrs Maria de Belém Roseira, Mr Alessandro Rossi, Mrs Marlene Rupprecht (alternate: Mr Wolfgang Wodarg), Mr Indrek Saar, Mr Fidias
Sarikas, Mr Andreas Schieder, Mr Ellert B. Schram Mr Gianpaolo Silvestri,
Mrs Anna Sobecka, Mrs Michaela Šojdrová, Mr Oleg Ţulea, Mr Alexander
Ulrich, Mr Mustafa Ünal, Mr Milan Urbáni, Mrs Nataša Vučković, Mr
Dimitry Vyatkin (alternate: Mrs Tatiana Volozhinskaya),
Mr Victor Yanukovych (alternate: Mr Ivan Popescu),
Mrs Barbara Žgajner-Tavš, Mr Vladimir Zhidkikh,
Ms Naira Zohrabyan.
NB: The names of those members present at the meeting are
printed in bold.
Secretariat of the committee: Mr Mezei, Mrs Meunier