Report | Doc. 14657 | 29 October 2018
The provision of palliative care in Europe
Committee on Social Affairs, Health and Sustainable Development
Summary
Palliative care aims at improving the quality of life of both patients and their families, by addressing not only the physical symptoms associated with the patient’s condition, but also its emotional, psychological, spiritual, social and economic repercussions. Palliative care is thus fundamental to human dignity and should be available to all persons who need it.
In Europe, hundreds of thousands of people do not have access to appropriate palliative care services, including, in particular, access to appropriate pain relief. Consequently, patients and families suffer needlessly, while health-care systems are put under additional strain due to unnecessary and costly hospital admissions and emergency services. Informal caregivers play a crucial role in palliative care provision and should be adequately supported in this role.
With a view to ensuring access to quality palliative care for everyone who needs it, member States should recognise palliative care as a human right and fully integrate it into their health-care system. They should remove all obstacles that restrict access to pain-relieving medication in the context of palliative care, and ensure adequate training on palliative care for health-care professionals. They should also provide comprehensive support for informal caregivers, including respite services.
A. Draft resolution 
(open)B. Explanatory memorandum by Mr Rónán Mullen, rapporteur
(open)“You matter because you are you and you matter until the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”
Dame Cicely Saunders, founder of the modern hospice movement
1. Introduction
Prologue
At the heart of the provision of
palliative care is the concept of dignity. Dignity is inherent to
all human beings, and our human rights flow from our inherent dignity.
Palliative care is an expression of the fact that dignity should
be respected throughout a person’s life until his or her natural
death. The provision of palliative care to all who suffer from chronic,
debilitating and terminal illness is a means by which our society
can vindicate our inherent human dignity by valuing the life of
each individual human being. The values of hope and solidarity drive
us to care for each other, particularly our loved ones, even in
the face of great illness and suffering. “And even if we know that
we cannot always guarantee healing or a cure,” said Pope Francis
recently, “we can and must always care for the living, without ourselves
shortening their life, but also without futilely resisting their death.
This approach is reflected in palliative care … as it opposes what
makes death most terrifying and unwelcome – pain and loneliness.”
1.1. Procedure
1. On 21 April 2016, 24 Parliamentary Assembly members, including
myself, tabled a motion for a resolution on “The provision of elderly
and palliative care in Europe”. Referring to Recommendation Rec(2003)24
of the Committee of Ministers on the organisation of palliative
care, the motion called for an investigation into palliative care
provision in Europe, with particular reference to access and resource allocation.
The motion was referred to the Committee on Social Affairs, Health
and Sustainable Development and I was appointed rapporteur on 10
October 2016. The committee simultaneously decided to change the
title of the report, excluding the term “elderly”, as issues related
to older persons’ health were being covered by a separate report.
2. On 24 January 2018, the committee held a hearing with the
participation of: Mr Philip Larkin, Professor of Clinical Nursing
on Palliative Care at University College Dublin and Our Lady's Hospice
and Care Services; Ms Tiina Saarto, Professor of Palliative Medicine
and Chief Physician at the palliative care centre in Helsinki University
Hospital; and Mr Henri de Rohan-Chabot, Executive Director of the
France Répit Foundation. The experts
stressed that palliative care was a human right. They noted that
it was essential to integrate palliative care into health-care systems
and to ensure good co-ordination among different palliative care
providers, with a view to ensuring access to quality palliative
care for all, across the lifespan. The experts also emphasised that
informal caregivers play a crucial role in palliative care provision
and that it is important to provide appropriate support for these
persons.
3. On 13 and 14 March 2018, I carried out a fact-finding visit
to Madrid and Barcelona (Spain). In Madrid, I met, inter alia, representatives from
the Ministry of Health, members of the Health Committee in the Congress of
Deputies, representatives of the Spanish Association against Cancer
(AECC), the
Spanish Society of Palliative Care (SECPAL) and
the Spanish Medical Colleges Organisation. I also visited
Laguna Hospital Care Centre, a private hospital specialising in
palliative care, where I spoke with patients and family members. This
inspiring visit confirmed me in my conviction that, even as death
approaches, patients and their families can and do experience peace
and positivity when offered appropriate medical, psychosocial and
spiritual support respectful of their dignity and needs. My meetings
in Barcelona were hosted by the World Health Organization (WHO)’s
Collaboration Centre for public health palliative care programmes.
Here, I had the opportunity to gather extensive information about
palliative care provision in Catalonia from professionals working
in the field. I should like to thank all my interlocutors for their
valuable contributions, as well as the delegation of the Spanish
Parliament and its Secretariat for their help in organising my visit.
1.2. Definition and scope
4. WHO provides the most widely used definition of palliative
care, in accordance with which “palliative care is an approach that
improves the quality of life of patients and their families facing
problems associated with life-threatening illness, through the prevention
and relief of suffering by means of early identification and impeccable
assessment and treatment of pain and other problems including physical,
psychosocial and spiritual”. WHO has also developed guidelines which
attempt to encourage a standardised scientific approach to the diagnosis
and treatment of severe acute and chronic pain to inform the work
of policymakers and health-care professionals.
5. Based on the WHO definition, palliative care seeks to improve
patients’ and their families’ quality of life and to uphold their
sense of dignity by focusing on the alleviation of suffering in
all its forms. Palliative care focuses not only on the effective
management of physical symptoms, but also addresses the emotional, psychological,
spiritual, social and economic problems associated with the patient’s
condition, thus helping him/her “to live as well as possible, for
as long as possible”. Consequently,
palliative care is about a holistic approach that meets “the needs
of the whole person, not just their medical condition”.
6. The starting point of this report is the above-mentioned
definition from WHO regarding adult palliative care which
“affirms life, regards dying as a normal process and intends neither
to hasten nor to postpone death”. Children’s
palliative care, while closely related to adult palliative care,
is a specialisation in itself and requires full consideration separately.
For that reason, palliative care for children is mentioned in this
report in context but the full range of relevant issues is not discussed.
Euthanasia and assisted suicide are not part of palliative care
practice and
are therefore not addressed in this report. Also, the appropriate
decision-making structures for medical treatments at the end of
life, involving patients, families, health-care professionals and others,
are dealt with elsewhere and do not feature in significant detail
here.
7. The issue of palliative sedation deserves a mention. “Sedation
seeks, by means of appropriate medication, to reduce awareness to
a degree which may extend to loss of consciousness. Its aim is to
alleviate or remove the patient’s perception of severe pain or suffering
when every available treatment adapted to this situation has been
offered and/or dispensed but which has failed to bring the expected
relief. The aim of sedation is not, therefore, to shorten life”, but it can have this effect. Since
the primary purpose of palliative sedation is to relieve suffering,
it should not be denied to a patient by reason only of fear of hastening
death. However, palliative sedation should not be used as a mask
for euthanasia.
8. The past and present role of hospices operated by charitable, voluntary and faith-based organisations in the provision of palliative care is deserving of particular mention. In many member States, palliative care services are heavily reliant on this sector which is often a leader and innovator in policy and service development. These organisations also make a major contribution to the funding of palliative care within member States through their private fundraising efforts.
9. The work of the European Association for Palliative Care
(EAPC) should be acknowledged. Its Atlas of Palliative Care in Europe
provides invaluable analysis, benchmarks palliative care services
across member States and should inform efforts to improve palliative
care services.
2. Evolution of palliative care
10. Historically, palliative care was geared towards the needs
of a specific population (cancer patients) for a specific time frame
(the end of life). However, it gradually became clear to political
and health-care leaders that this focus was too narrow, that many
other people would stand to benefit from this kind of care and
at a far earlier stage than the period when death was imminent.
In its Resolution 1649
(2009) “Palliative care: a model for innovative health and
social policies”, the Assembly underlined that palliative care should
be available not just to the terminally ill, but to those who are
seriously ill and chronically ill, as well as to all those requiring
high levels of individual care who would benefit from the palliative
care approach.
11. Today, it is widely acknowledged that palliative care
should be provided to different patients, regardless of age, with
a wide variety of life-threatening or life-limiting conditions that
go hand-in-hand with distressing symptoms. Examples are cardiovascular
diseases, diabetes, HIV/AIDS, motor neurone
disease, multiple sclerosis, Parkinson’s disease, dementia, heart,
renal and liver diseases and drug-resistant tuberculosis. WHO clearly
states that palliative care is applicable early in the course of
an illness (that is to say not just at the end of life), in conjunction
with other therapies intended to prolong life such as chemotherapy
or radiation therapy.
12. WHO estimates that each year, 40 million people are in
need of palliative care, the majority of whom have chronic diseases
such as cardiovascular diseases (38.5%), cancer (34%), chronic respiratory
diseases (10.3%), AIDS (5.7%) and diabetes (4.6%). However, as indicated
above, many other conditions may require palliative care and it
is expected that the population requiring palliative care will grow
considerably over the next decades as a result of an ageing population
“living and dying with more complex conditions”.
2.1. Palliative care provision for life-threatening or life-limiting diseases other than cancer
13. Despite these estimates, palliative care services still
largely focus on cancer patients and mostly on end- of-life care.
Consequently, many people living with other life-threatening or
life-limiting conditions do not receive any palliative care or receive
it only in the last phase of their illness. There is a need to move
away from seeing palliative care as mainly reserved for those suffering
from terminal cancer towards providing palliative care services
to patients with other life-threatening or life-limiting conditions.
Moreover, palliative care needs should be identified as early as
possible, in the primary care setting, so as to provide for those
needs in a timely manner, if necessary alongside treatments targeting
the underlying disease. This concept of simultaneous disease targeting
and palliative approaches to care is yet to be established, especially
in areas other than cancer care. Limited
or delayed palliative care provision not only increases suffering
for patients and families but also involves higher costs for the
health system, as it leads to unnecessary hospital admissions and inappropriate
recourse to expensive emergency services and treatments.
14. In Spain, a majority of patients accessing palliative
care services have a cancer diagnosis. However, within the context
of the NECPAL (Necesidades Paliativas;
Palliative Needs) programme, palliative
care researchers have developed a tool to identify non-cancer patients
in need of palliative services. This programme is based on the British
experience of the Gold Standards Framework and consists in the early identification
of chronic patients in need of a palliative care approach in conventional
services.
2.2. Integration of palliative care into health-care systems, with a focus on community and home-based care
15. According to WHO, to be sustainable and accessible, palliative
care should be integrated into all services and settings of the
health-care system, including in particular community and home-based
care, with appropriate support for care providers (see point 5.2
below). In fact, since it is both unsustainable and undesirable
that an ever-increasing number of chronically ill and dying patients
are cared for primarily in a hospital setting, countries should
prioritise the provision of palliative care services in the community
and at home, where such services can be provided at a lower cost
and where people with limited access to medical facilities can be
reached. It
should not be forgotten that most patients want treatment options
which allow them to stay in their homes as long as possible, and
most people would prefer to be at home when they die. Thus, there
are economic, legal, moral and social arguments for investing more
in services in the community and at home.
16. Catalonia in Spain is a good example of how integration
of palliative care into the health-care system can save money. By
2012, 237 palliative care clinical services had been implemented
in Catalonia, including 72 home care support teams, 49 hospital
support teams, 60 units with 742 dedicated beds, 50 outpatient clinics,
and six psychosocial support teams. The yearly costs were around
€52 568 000, down from €69 300 000 (with net savings to the national
health system of €16 32 000).
3. Palliative care: a human right
17. As early as 1976, the Parliamentary Assembly recognised
the need “to ensure that all sick persons, whether in hospital or
in their own homes, receive relief of their suffering …”. In
its Recommendation 1418 (1999) on the protection of the human rights and dignity of
the terminally ill and the dying, the Assembly went further and
encouraged member States to recognise the right to palliative care
as a “legal entitlement”. Similarly, in 2014, the United Nations
acknowledged that access to palliative care is a legal obligation
on the part of governments and health services, when the first WHO
resolution dedicated to palliative care called on governments to
ensure access to palliative care within national health systems.
18. Palliative care advocates consider, however, that palliative care is not simply a legal entitlement but a human right. In 2012, the European Association for Palliative Care, the International Association for Hospice and Palliative Care, the Worldwide Hospice Palliative Care Alliance, Human Rights Watch and the Union for International Cancer Control launched the Prague Charter, “Palliative Care: a human right”, which urged governments worldwide to focus their efforts on developing or improving palliative care by, among other things, widening patient access to pain medication.
19. There are legal arguments to support the human rights
foundation of palliative care. In fact, in its General Comment No.
14 of 2000, the United Nations Committee on Economic, Social and
Cultural Rights, the independent body charged with monitoring compliance
with the International Covenant on Social and Economic Rights, stated
that the right to the highest attainable standard of physical and
mental health is an inclusive right that extends to “preventative,
curative and palliative health services”, thus recognising palliative care
as a component of the human right to health. The Committee also
called for “attention and care for chronically and terminally ill
persons, sparing them avoidable pain and enabling them to die with
dignity”.
20. Moreover, at the international level, it is increasingly
recognised that the denial of palliative care, and in particular
pain relief, can amount to a human rights violation. In fact, in
his 2009 report focused on health care, the United Nations Special
Rapporteur on torture, Manfred Nowak, noted that: “The de facto denial of access to pain
relief, if it causes pain and suffering, constitutes cruel, inhuman
or degrading treatment.” In 2013, his successor, Juan Méndez, emphasised
that when States deny access to pain treatment, they “not only fall
foul of the right to health but may also violate an affirmative
obligation under the prohibition of torture and ill-treatment”. Finally,
in their national law regarding palliative care provision, some
countries refer to palliative care as a human right (see paragraph
25). With a view to advancing palliative care provision in Europe,
it would be important to strengthen recognition among Council of
Europe member States of access to palliative care as a human right.
4. Council of Europe political leadership on palliative care
21. On 12 November 2003, the Committee of Ministers adopted Recommendation Rec(2003)24 on the organisation of palliative care. The recommendation defines palliative care as an “integral part of the health care system and an inalienable element of a citizen’s right to health care”. It therefore considers that “it is a responsibility of the government to guarantee that palliative care is available to all who need it”.
22. The Recommendation urges countries to adopt policies and legislative and other measures with a view to building a comprehensive national policy framework for palliative care. It identifies the following core dimensions for palliative care provision: symptom control, psychological, spiritual and emotional support, support for families and support for the bereaved. Accordingly, access to palliative care, including access to adequate pain medication, should be guaranteed on the basis of need and without undue financial barriers. Informal caregivers should be supported in their caregiving, and should not incur major setbacks, such as job loss, as a consequence of their caring role. There should also be sufficient respite facilities for caregivers. Highlighting the importance of academic recognition of palliative care, the Recommendation says it should be included in all undergraduate training programmes for both doctors and nurses.
23. The Recommendation constitutes a strong political commitment from the Council of Europe member States to the development of palliative care services to the highest possible standards. Following the adoption of this instrument, the European Parliament commissioned a study in 2008 “to establish clear diagnosis on where the European Union as a whole, and every member State in particular, stand in respect to the proper definition, organisation, offering and financing of palliative care; analyse some selected examples of best practices … and finally, present policy options … to improve the present situation”.
24. The study concluded that considerable advances had been
made in the field of palliative care in the previous five to ten
years throughout Europe (for example, in 2008, every European Union
member State had palliative care services), and noted that there
were numerous national initiatives underway to further improve quality
and equitable service coverage in EU member States. However, it
also noted flagrant disparities in the availability and quality
of, and access to, the care provided, not only between member States,
but also between regions, rural and urban areas as well as among
social groups. The study refers to the Committee of Ministers’ recommendation
as an example of how European leadership can stimulate national
advancement in palliative care.
25. A more recent study on national palliative care policies
in 53 European countries within the WHO European Region (including
43 Council of Europe member States) found that 18 countries – all
of which are Council of Europe member States – had a national palliative
care plan or strategy. An additional 13 countries were working towards
publishing national plans. Moreover, 29 countries, including 26
Council of Europe member States, had a national law regarding palliative
care provision. The first countries to establish palliative
care legislation were Hungary (1997), France (1999), Belgium and
Spain (2002), with the last
three including a reference to palliative care as a human right.
26. The study stressed that the Committee of Ministers’ recommendation
had marked a change in the development of palliative care policy
throughout Europe, coinciding with a somewhat sharp increase in
the development of the discipline across the continent. While it
is difficult to attribute quantifiable advances in a given field
to a single set of recommendations, the study noted that the Recommendation
Rec(2003)24 had articulated support for national palliative care
policy at a relatively early stage of European development in the field.
As such, the Council of Europe may have had a tangible influence
in the improvement of the situation.
5. Shortcomings in palliative care provision
27. Although palliative care has long been recognised worldwide
as one of the most important elements in improving the quality of
life of patients approaching the end of life and of those with deteriorating
infirmities, the need for palliative care and pain relief has been
largely ignored in many countries. A recent Lancet Commission report
explains this neglect by referencing several barriers, including
the focus, within medicine, on: curing patients and on extension
of life to the detriment of care-giving and attention to the quality
of life near death; opiophobia,
i.e. prejudice and misinformation about the appropriate medical
use of opioids (e.g. belief that opioids are dangerous
and should be used as little as possible); preventing non-medical
use of internationally controlled substances; limitations on patient
advocacy because of the stress and difficulty of dealing with serious
illness; and the global neglect of non-communicable diseases, which
account for much of the need for palliative care.
28. These considerations also apply to some European countries
and the extent to which people have access to palliative care varies
considerably across the continent. In fact, in his recent human
rights commentary relating to care of older persons, the (former)
Council of Europe Commissioner for Human Rights stressed that access
to palliative care and pain relief remained problematic in Europe.
He noted that many countries on the continent were affected by shortcomings
in relation to palliative care, for example a lack of palliative
care policies, of training in pain management for caregivers, as
well as problems regarding regulation and availability of opioids.
5.1. Symptom control: Access to pain relief
29. Pain is one of the most common and distressing symptoms
experienced by patients with life-threatening or life-limiting conditions.
It has a profound impact on quality of life and can have physical,
psychological and social consequences. It can lead to reduced mobility
and loss of strength, compromise the immune system, and interfere
with a person’s ability to eat, concentrate, sleep and interact
with others. People who live with chronic pain have been found to
be four times more likely to suffer from depression or anxiety than
people who are not in pain. Chronic pain can also negatively influence
the course of disease. Pain
control is thus a crucial component of palliative care.
30. Opioid analgesics play a vital role in the treatment of
pain and other common distressing physical symptoms such as breathlessness,
and WHO defines them as essential medicines. They are effective, inexpensive
and easily administrable. However, in Council of Europe member States,
access to medicine, notably opioids and other pain-relieving treatments,
continues to be a main obstacle to meeting patients’ essential needs
in palliative care. In the European Union, about 1.3 million people
die from cancer each year. Many are in severe pain, even though
effective pain medication is possible. This is probably a conservative estimate
of the unmet need for pain relief, because it neither includes patients
with other chronic diseases requiring palliative care, nor does
it aggregate figures from non-EU member States.
31. Human Rights Watch has reported that about 8 000 people
die from cancer in Armenia every year, many spending their last
days in extreme pain. Often in these cases, when there is no longer
hope of curing the cancer, and treatment is ineffective, patients
are sent home. Fewer than 3% of those who need morphine in Armenia
receive it because of bureaucratic barriers around prescribing and
dispensing morphine (and other strong opioids). Similarly, in Ukraine, tens of thousands
of patients with advanced cancer suffer from severe pain every year
because they cannot access pain-relief medication. The Commissioner
for Human Rights has more recently reported that Armenia and Ukraine
have made progress in this area. Armenia has adopted a national
strategy to introduce palliative care services which focuses on
pain relief and the improvement of quality of life for people with
life-threatening illnesses. It has also registered two forms of
liquid oral morphine, paving the way for their use in the public
health-care system.
32. The “Access To Opioid Medication in Europe” (ATOME) project
investigated why opioid medicines effective in treating moderate
to severe pain as well as opioid dependence itself were not used
adequately in 12 European countries, and developed customised
solutions for improved access to opioid medicines in these countries.
The report found major barriers in the field of legislation (for
example overly strict regulations restricting permission to prescribe
opioids to physicians of certain specialities or who hold a special
licence), national policies, knowledge and societal attitudes, and
economic aspects such as affordability.
33. The key recommendations towards overcoming those barriers
involved the inclusion of treatment with opioids (knowledge, skills,
and attitudes) in undergraduate and postgraduate education for relevant
health-care professionals (primarily physicians, nurses and pharmacists);
raising awareness of treatment with opioids among practising health-care
professionals (for example, via continuing medical education, publications
about the rational and beneficial use of opioids in highly accessed
national medical journals); and raising awareness among the general
public via media or information campaigns and brochures for patients
and their relatives.
5.2. Support for family-based and other informal caregivers
34. Support for informal caregivers with a view to improving
their quality of life and well-being, as well as helping to ensure
that they are able to care for their loved ones, is a core aspect
of palliative care provision. Caregivers need support with the organisation
of care, in dealing with the emotional burden caused by their loved
one’s illness and with the actual work of care, and they will need
bereavement support after the death of the patient.
35. Today, it is estimated that there are more than 100 million
carers within the European Union who provide care to someone with
a chronic illness, disability or other long-lasting health or care
need. These
informal/family caregivers – spouses, partners, relatives and friends
– play a crucial and irreplaceable role in the provision of palliative
care. Against the background of an ageing population and given the
widespread expression of preference for care at home, their role
can only grow in the coming years.
36. During the expert hearing in January 2018, Mr de Rohan-Chabot stressed that home-based palliative care services were often oriented towards the patient without due consideration of the needs of the informal caregivers whose lives were greatly impacted at all levels (professional, social and family life) as a result of their caring activity. This inattention to the needs of caregivers is due to an unrealistic fear that support would lead to an exponential increase in health costs.
5.2.1. Best practices
37. There are many ways to support informal caregivers and there are many examples of such support in Council of Europe member States. In Luxembourg, for example, relatives who provide care are protected against the financial losses resulting from a reduction of their working hours via a special insurance scheme. In Sweden, France and Austria, there is statutory unpaid leave for care-providing relatives and, in Sweden, financial support is available for caregivers. In Ireland, allowances are paid, at various levels and subject to means, to qualifying carers.
38. Measures to offer informal caregivers respite are also important. In Lyons (France), a pilot project called “Caring Metropolis” aimed at offering various services to home-based patients and their carers is currently being conducted. The project, supported by national and regional authorities, includes a “respite house” where patients and families can stay temporarily (30 days a year) and receive medical and other services such as psychosocial support and the possibility of spending time on leisure and well-being activities (for informal caregivers). A mobile team within the respite house – comprising doctors, nurses, psychologists and social workers – assist families before, during and after their stay, including by providing bereavement support. The project also includes information, orientation and individualised support, as well as training and workshops for carers.
39. Other measures which may be implemented at member State level to assist families and carers include: encouraging a shared approach between health-care professionals and family members in relation to the care of the patient; offering clear choices to family members to become involved in the care of their loved one at a level which they feel is appropriate for them; clear lines of decision-making and a flow of information to carers from health-care professionals about the treatment of the patient; clear and frank information about the patient’s prognosis (subject to his or her wishes), particularly towards the end of life, to allow the carer to prepare themselves and to cope with this information; anticipation of the impact which the death of the patient may have on caregivers and family members; and the provision of bereavement support after the death of the patient.
5.2.2. Gender dimension of informal care
40. Across the European Union, a majority of the 100 million
informal carers are women, typically spouses, middle-aged daughters
or daughters-in-law, aged 45 to 75. This disparity between men’s
and women’s participation in caregiving explains some structural
features of female employment, such as its concentration in some
sectors, the gender employment and wage gap and higher temporality
and extent of part-time jobs among women.This
issue should be addressed, not just in terms of financial support
for those who engage in caregiving, but also in the structuring
of workplace arrangements so as to facilitate the task for women
and men who want to take up the role of informal caregiving in their
particular situation. With the increase in the need for caregiving,
the pressures of juggling work and caregiving roles will increase
and the current system will become unsustainable.
41. Decisions on informal caregiving are for individuals and
families to make for themselves, having regard to their particular
personal or family situation, aptitudes, capacities, etc. Labour
legislation and regulations which provide for family-related leave
and flexible working arrangements – which women tend to disproportionally
make use of for obvious reasons – should be accompanied by cultural,
financial and employment measures aimed at removing any other barriers
to women and men engaging in informal caregiving (for example, by
facilitating paid leave for both men and women in such instances).
5.3. Lack of training
42. According to WHO, lack of training and awareness of palliative
care among health professionals is an important barrier to improving
access to this type of care. As indicated above, prejudice and misinformation about
the appropriate medical use of opioids is a major problem, including
among health-care professionals. Many doctors also can’t bring themselves
to mention the term “palliative care” because of possible negative connotations
(see below), leading them to postpone any offer to provide such
care, instead continuing for far too long to prescribe medical treatments
that have become ineffective. Moreover, physicians feel like they are
failing or letting patients down and abandoning them by raising
the subject of palliative care services. Many
still do not understand that palliative care can be provided concurrently
with curative treatments.
43. Consequently, training of health professionals should
include the acquisition of competences in pain management and controlling
other symptoms. They should also learn how to approach and take
into account social, emotional and spiritual needs, how to support
families before and after the patient dies, and how to work in a
team. Palliative care nurses should acquire skills in the early
recognition of signs and symptoms, possess excellent communication
skills and, above all, should be able to deal with the ongoing reality
of caring for dying patients and their distressed families.
44. It has been claimed that early recognition of palliative
medicine as a medical speciality in the United Kingdom has been
a hallmark of the development of palliative care in the country.
Today, there is no European-wide recognition of palliative medicine
as a medical speciality, with it having speciality status in two
European countries only, Ireland and the United Kingdom. Mandatory
undergraduate education in palliative care, as part of a harmonised
public health approach for Europe, would be one of the most effective
measures in the improvement of end-of-life care.
45. Poor public awareness and public misconceptions also constitute barriers to accessing palliative care. Because at the outset palliative care was developed for patients at their end-of-life stage, for many Europeans the prescription of palliative care is therefore perceived as an announcement that death is imminent. Many don’t know what services are available under the heading of palliative care or don’t understand the term at all. This is also one of the main conclusions resulting from the survey which I sent out to my contacts (see section below).
5.4. Psychological, spiritual and emotional support
46. Optimal palliative care includes not only appropriate
medical and therapeutic interventions but also psychological, spiritual
and emotional support. As part of the palliative care team, the
psychologist, social worker, faith leader, minister or counsellor
all play critical roles that extend beyond the management of the psychological
symptoms and syndromes of patients into areas that include existential
issues, family and caregiver support and bereavement. The Vatican
Pontifical Academy for Life has recently stressed the need for such
spiritual care to be provided at local and State level and indeed this
concern for the provision of spiritual care is shared across different
faiths, beliefs and denominations. However, the provision of such support
often remains scarce. In fact, as rapporteur, I sent out a survey
to my contacts, inviting them to share their experiences of palliative
care. Many participants who are based in Ireland and the United
Kingdom regretted a lack of psychological and spiritual support,
as well as the fact that families often have to take the initiative
to ask for spiritual or psychological support rather than these
being offered automatically. This is notwithstanding the fact that
palliative care provision operates to a high standard in each of
these countries.
47. In Spain, this kind of support is offered to patients through different mechanisms, including a public–private collaboration whereby the La Caixa Foundation together with the Ministry of Health is financing and implementing the “Programme for the Comprehensive Care of Patients with Advanced Chronic Conditions and their Families”. This programme aims to address the emotional, social and spiritual needs of patients with advanced diseases and of their families and complements already existing palliative care services. It does this by providing teams of professionals to carry out psychosocial and spiritual interventions for people who are at the end of life as well as for their families. The programme provides psychosocial care teams in 17 autonomous communities in Spain, which operate both in hospitals and at patients’ homes. It provides teams with the necessary training, support and monitoring to enable them to perform their duties. Multidisciplinary teams are composed of psychologists, doctors, nurses, social workers, pastoral workers and volunteers. In Spain, there are also a number of non-governmental organisations (for example the Spanish Association against Cancer) providing psychosocial support for patients and families and helping them with the management of everyday activities.
6. Palliative care for children
48. Although the WHO definition of palliative care for children is similar to that for adults, there
are some very distinct differences. In particular, most children
requiring palliative care have non-cancer conditions and are born
with life-limiting or life-threatening conditions which are often
coupled with chronic and complex disabilities. Many of these life-limiting
conditions in children are extremely rare and specific to childhood,
and the timescales involved in the provision of palliative care
can be much longer than for adults.
49. There are major disparities in the development of children’s
palliative care services within and between the 47 Council of Europe
member States. Several countries, including Ireland, Italy and the
United Kingdom, have undertaken national needs assessments aimed
at identifying the requirements of children with life-limiting conditions
and their families. Most children requiring palliative
care will have their care needs met by their family at home supported
by locally provided services. Parents often take on the role of
primary carer, often impacting on their ability to care for their
other children and to contribute to the financial and practical
running of their household. More so than in adult palliative care,
respite care has been identified as an essential part of enabling
parents to care for their sick child at home.
50. As a speciality, palliative care for children has evolved
from paediatrics rather than through palliative care. This is in
line with the provisions of the United Nation Convention on the
Rights of the Child to the effect that children are best cared for
by those specifically trained and experienced in the care of children . Unfortunately,
such a paediatrics-driven evolution of children’s palliative care
is not reflected in certain countries where there is a lack of resources
and services.
51. To develop palliative care for children, education and
training of health-care professionals is essential at all levels.
A core curriculum for health-care professionals has been developed
by the European Association of Palliative Care, but courses specifically relating
to palliative care for children are not widely available. It is also
vital that the voice of the child is heard in the delivery of health
care and palliative care. Children’s palliative care has been recognised
as a medical speciality in its own right in the United Kingdom and
this is something that should be considered by other member States.
7. Conclusions
52. Palliative care provision is about more than services. It is about respect for human dignity and human rights. The traditional focus of health-care systems on prevention, diagnosis and cure must shift towards a more comprehensive system, to include adequate palliative care services which improve the quality of life of patients with life-threatening and life-limiting conditions, allowing them to live well until they die.
53. Countries cannot meet Goal 3, Target 3.8 of the Sustainable Development Goals, namely “Achieve universal health coverage, including financial risk protection, access to quality essential health-care services and access to safe, effective, quality and affordable essential medicines and vaccines for all”, without including palliative care and pain relief. With a view to providing optimal standards of palliative care, member States should adopt laws that acknowledge and define palliative care as part of national and regional health-care systems, incorporate it directly into national health strategies/programmes, and make it accessible to all patients who need it. Palliative care services still focus on terminal cancer and must urgently be extended to all patients with any kind of chronic condition who could benefit thereof. Adapting palliative care services to serve non-cancer patients with advanced chronic conditions is a challenging but critical exercise for health-care systems and will involve considerable amounts of investment both in terms of infrastructure and personnel, but it has the potential to bring down costs over time, while meeting the needs of the patients concerned and their families and caregivers.
54. Member States should overcome legal, regulatory, educational and attitudinal obstacles that restrict availability and access to pain-relieving medications in a palliative care setting, and provide adequate support for informal caregivers. Considering that comprehensive palliative care provision requires the involvement of multidisciplinary teams of professionals, the provision of education/training (from basic to postgraduate levels) should be prioritised. Member States should review education curricula to ensure that health-care workers such as doctors and nurses receive sufficient training in palliative care and pain management. They should also consider collaboration with the voluntary and private sectors in the provision of palliative care services. Finally, member States should always have regard to the essential role of research in the development and improvement of palliative care services.