International Policy Fellowship
ID 0329
– PBH – LUN - SI
Organizing palliative care
in Slovene health care system
Policy Paper
November 2005
Urska Lunder
Ljubljana, Slovenia
International Policy Fellow 2004
Center for Policy Studies
Open Society Institute
Budapest, Hungary
Outline
Executive summary
1. Introduction
1. 1. Palliative Care definitions
1. 2. What is good death?
2. A gap between evidence and the reality at the patient’s bed
3. Why is palliative care public health priority?
3. 1. Status of palliative care in Europe and some respective other countries
3. 1. 1. Hospice and palliative care in United Kingdom
3. 1. 2. Palliative care in Catalonia in Spain
4. Status of palliative care in Slovenia
4. 1. Reasons for slow implementation of nationally organized palliative care
4. 2. Main issues and obstacles for strategies for the implementation of palliative care into national health system
4. 3. Needs assessment
5. Evidence of effectiveness of palliative care
5. 1. Common protocol
5. 2. Classifying of palliative care – some options
5. 3. What are the specific challenges of implementing the clinical pathway?
6. Discussion
7. Possible strategies for palliative care in Slovenia
8. Recommendations
9. Appendix
Palliative care is an important
public health issue. It is concerned with suffering, dignity, care needs, and
quality of life for people at the end of their lives. It is also concerned with
the care and the support of their families and friends. Palliative care was a
neglected topic in Slovenia: indirect indicators of the status of palliative
care, like opioid consumption, palliative care in education, epidemiological
observations and lists of existing palliative care services can show
insufficient development of palliative care in Slovenia in comparison to many
other countries in Europe.
The most important principles are to
consider palliative care as a right for every person who needs it, and
palliative care services as a generally available service integrated into the
mainstream of the national health care system, with focus on community and home
care, underpinned with specialist care in health care institutions (acute and
non-acute settings in hospitals and nursing homes).
The basic aims of the appropriate
development of palliative care are to develop palliative care to gradually
achieve populations (for cancer and non-cancer patients) and geographic
coverage, accessibility, equity, quality (effectiveness, efficiency), and
systems for monitoring outcomes.
There are many interventions that
could be used to improve palliative care in the realm of public health. There
should be a specific strategy on the national level to develop and combine
well-planned resources with an emphasis on training and team work in order to
integrate palliative care into the health system. The planning and
implementation of palliative care must be comprehensive, with measures taken in
all health care settings: in hospitals, nursing homes, hospices, or other
health systems, and at the patient's home. This care should be adapted to the
health and social system, and linked from the beginning, to relevant areas,
particularly oncology, primary care, paediatrics, geriatrics, and neurology, in
order to promote maximum integration. A social and political impetus is also
required, entailing changes in attitudes and widespread education of the public
and all professionals involved with patients who have life-threatening illness.
The elements of this policy paper
are the study of the current status of palliative care and the assessment of
needs in Slovene health care system and two EU countries (United Kingdom and
Catalonia, Spain); alternatives of possible implementation of specific
services, measures in general services; education and training; a discussion on
the development of quality standards, guidelines and clinical pathways, with
some implications about financing. These are the necessary elements to propose
policy recommendations to the Ministry of Health and provide a practical model
of organized palliative care for all settings.
1. Introduction
Until the last few decades, most
people died quickly, following an infection or injury, or soon after the
initial symptoms of an advanced an untreatable condition like cancer, diabetes,
or heart disease. Modern living conditions and advances in health care have
ensured that most will die slowly, and mostly in old age[1].
Three quarters of us will experience cancer, stroke, heart disease, obstructive
lung disease, or dementia during our last year of life[2].
While medical advances have transformed many illnesses that once proved rapidly
fatal into chronic conditions, improving the quality of this resulting longer
life has been much more difficult to achieve[3].
The modern hospice movement was
established in response to the poor quality of care of the dying patients in
health systems[4]. The hospice
model of care is now espoused as a model of excellence and has led to a
worldwide movement aspiring to deliver high quality palliative care to dying
patients in health systems. The aim of the introduction of palliative care
services into the health care system is the improvement of the quality of care
for patients with advanced non-curable disease. Palliative care services
directly influence patient care and also have an advisory and educational role
to influence the quality of care in the community and hospitals.
It
is society’s responsibility through government, health care planners,
professional organizations, and health professions to provide the resources to
ensure a system of intensive care for dying patients and their families. This
necessitates the development of the field of palliative care to ensure that the
appropriate expertise is widely and readily available as well as accessible to
all. Health care systems will therefore be challenged to provide effective and
compassionate care for larger numbers of people at the end of life.
Public
health aims include coverage, equity, quality, comparability, and the
introduction of changes into the organization of health care services.
This paper suggests to enhance new
opportunities to improve the delivery of palliative care;
an overview of these initiatives and
accomplishments thus far; the challenges in developing and implementing a
national strategy on palliative and end-of life care; and, future directions
for this collaborative initiative.
1.
1.
Palliative Care Definitions
The European Association for
Palliative Care defines palliative care as[5]:
“Palliative medicine is the appropriate medical care of patients with
advanced and progressive disease for whom the focus of care is the quality of
life and in whom the prognosis is limited (though sometimes may be several
years). Palliative medicine includes consideration of the family's needs before
and after the patient's death.”
There might be problems in defining
the patient's condition. Even though the basic principles may be agreed upon,
there are frequent differences of interpretation regarding the clinical status.
The core of palliative care is well understood, but because of the complexity
of palliative care there are various definitions used around the world.
World Health Organization's
definition of palliative care[6] recommends:
“Palliative care is an approach that improves the quality of life of
patients and their families facing the problems associated with
life-threatening illness, through the prevention and relief of suffering by
means of early identification and impeccable assessment and treatment of pain
and other problems, physical, psychological and spiritual.”
Palliative care[7] :
· provides relief from pain and other distressing symptoms,
· affirms life and regards dying as a normal process,
· intends neither to hasten or postpone death,
· integrates the psychological and spiritual aspects of patients care,
· offers a support system to help patients to live as actively as possible until death,
· offers a support system to help the family cope during the patient’s illness and their own bereavement,
· uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated,
· will enhance quality of life, and may also positively influence the course of illness,
· is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
Palliative Care
Program aims to achieve an integrated service across all aspects of care. This
is supported by the underlying principles of Palliative Care Program, which
are:
- Care is holistic, multidisciplinary and client-centered;
- Care includes medical, nursing, allied health and volunteer services;
- Support is provided for families and friends, including grief and bereavement support;
- Patients can make informed choices about their care including the type of care and where the care is delivered;
- Service delivery is seamless between the locations where care is delivered, whether that be in the community or in a health care facility.
Palliative
care services can be provided in the home, in community-based settings like
nursing homes, palliative care units, and in hospitals. People who are dying
need to be able to move freely between these places, in response to their
medical care and support needs.
In general, palliative care is best
provided within close proximity to the person's home and community.
People involved in
palliative care may include:
- medical practitioners, including general practitioners, palliative care specialists, and other specialist physicians with a related interest
- nurses, including generalist and specialist nurses in the community, hospital and inpatient palliative care settings, and independent nurse practitioners
- allied health professionals, including social workers, physiotherapists, occupational therapists, psychologists, pharmacists, dietitians and speech pathologists
- volunteers
- support workers, including nurse assistants, personal care attendants
- bereavement counselors
- spiritual carers from a range of pastoral, spiritual and cultural backgrounds.
Administrators or business managers provide essential support to the team.
Families, also receive
care from the palliative care team, and are critical members of the team. In
particular, when a person is cared for at home, the family usually provides a
large proportion of the hands-on care.
1. 2. What is a good death?
No one can answer that question with
confidence. We have reliable and detailed statistics on life expectancy, age at
death, and place and cause of death, but we know little about the experience of
death. We don’t have data on how many died in pain, anxiety, disturbed by many
other symptoms, “hooked up” to life support they didn’t want, or alone.
Although the oldest health statistics are based on death certificates, one of
the weakest areas of health information is on how we die[8].
In the absence of systematic information and monitoring of end of life care and
comparisons across health regions (or health care organizations) there is no
opportunity to learn what is possible (those regions with the highest ratings),
or tracking whether improvements are occurring. For the minority who die under
the care of palliative care teams the experience is probably good, but there is
a suspicion that for the majority, who die in acute hospitals or nursing homes
or at their homes, the experience is bad.
A good death is clearly more than
being free of pain and three issues emerged repeatedly; control, autonomy, and
independence. The authors of the final report on The Future of Health and Care of Older People have identified 12
core principles of a good death[9]:
Core Principles of Good Death
1 to know when death is coming, and to
understand what can be expected
2 to be able to retain control of what happens
3 to be afforded dignity and privacy
4 to have control over pain relief and other
symptom control
5 to have choice and control over where death
occurs (at home or elsewhere)
6 to have access to information and expertise
of whatever kind is necessary
7 to have access to any spiritual and
emotional support required
8 to have access to hospice care in any
location, not only in hospital
9 to have control over who is present and who
shares the end
10 to be able to issue advance directives which
ensure wishes are respected
11 to have time to say goodbye, and control over
other aspects of timing
12 to be able to leave when it is time to go, and
not to have life prolonged pointlessly
A good death is an important aim for
health services and for us all[10].
These core principles of a good death should be incorporated into the plans of
individuals, professional codes, and the aims of institutions and whole health
services.
2. A gap between evidence and the reality at the patient’s bedside
Advances in diagnosis and
therapeutics have redefined the field of palliative care in the last decades.
But why is there a gap between evidence based palliative care, or knowledge
acquired during training and the reality at the patient’s bedside? And why is
it so difficult and frustrating, for those seeking to improve the quality of
end-of-life care [11]?
If we look at pain relief, where the
majority of advances have been made in research, but studies consistently
demonstrate that pain relief in various patient populations is inadequate,
despite the fact that we have known the principles of pain relief for over a
generation.[12],[13],[14],[15], [16]
There is much evidence
that people do not die in the place they wish, or with the peace they desire.
Furthermore, too many die alone, in pain, terrified, mentally unaware, without
dignity, and feeling alienated. Modern dying involves a struggle for control:
some doctors fear failure they can not keep their patients alive. Patients with
life threatening diseases, especially those with cancer, are often subjected to
aggressive attempts to cure even when they are likely to be futile.[17]
Singer and colleagues recently showed that fear about the unwanted application
of technology to prolong life was the most prevalent concern voiced by patients
on dialysis, with AIDS, or receiving long-term care.[18]
All too frequently, patient care was portrayed as a war to be won or lost. On
such a battlefield, patients in the process of dying could only be seen as the
ultimate losers. The issue is not whether, but how, to apply palliative care
which includes modern technology together with humanistic approaches to
patient/family needs.
Data suggests that
hospitals and health care professionals are not equipped or trained to handle
the medical and psychosocial problems that face those who are chronically ill
or dying[19],[20].
Although the barriers to achieving a peaceful death are many, they can be
grouped into three broad categories [21:
- professional knowledge of and skills in palliative care,
- professional and public attitudes about the goals of medicine,
- financial and structural aspects of the health care system;
3. Why is palliative care
public health priority?
The impact of death on our society
is easily underestimated. Palliative care is delivered to patients with
progressive illness where the prognosis of dying is less than one year and also
to all chronically ill patients with proponent symptoms and a high burden of
disease. This period can vary from a
short time to many years. Because it is very difficult to predict the course of
many chronic diseases, palliative care should be based on patient and family
needs and not on prognosis[22].
The examples of the trajectory of cancer, heart failure and dementia illustrate
this point[23].
Cancer
Depending on the site of the body affected
there are many cancers, where the prognosis for any individual depends on the
extent of the growth at presentation and the response of the tumor to
treatment, which may include surgery, radiotherapy and/or chemotherapy.
Patients are not usually severely restricted in their activity until the final
stages of the illness when there is no further response to the treatment (Fig.
1).
Fig. 1
Fig. 1
Model of a trajectory of an illness due to cancer.
Heart failure
Fig. 2
Model of an illness trajectory for organ failure such as heart failure.
Dementia
Fig. 3
Model of an illness trajectory for dementia or frailty
Quality of care at the end of life
is a global public health problem because of the large number people affected.
For example, in Slovenia 20,000 patients die each year. If each death affects
five other people in terms of giving informal care and grieving relatives and
friends [24], the number
of people affected each year in Slovenia is about 100 000 people or 5% of
population.
Palliative care can prevent needless
suffering, and could have a potential to prevent morbidity in the bereaved. It
provides patient centered care, and it incorporates self-management programs.
In the process of organized palliative care peer education and change in
clinical behaviour can be stimulated. In the majority of Western countries more
than half the people die in hospitals and other institutions[25],
and this is further proof that palliative care is a public health matter.
By recognizing that palliative care
is a public health topic, rational planning, implementation and evaluation
become priorities and require political commitment. Health administration has
to be involved from the beginning in order to promote quality and equity in the
provision of palliative care, and to finance it as a part of the overall health
care system[26]. There are
several international initiatives attempting to educate national policymakers
towards a better understanding of the importance of palliative care in national
health systems, for example,
- Council of Europe, Report of the Committee of
Experts on the Organisation of Palliative Care, adopted by the Committee of
Ministers, June 2003, with the key recommendations:
Key recommendation 1:
Adopt policies,
legislative and other necessary for a coherent and comprehensive national
policy framework for palliative care.
Key recommendation 2:
Take to this end,
whenever feasible, the measures presented in the appendix to the
recommendation, taking account of their respective national circumstances.
Key recommendation 3:
Promote international networking
between organizations, research institutions and other agencies that are active
in the palliative care field.
Key recommendation 4:
Support an active,
targeted dissemination of these recommendations and its explanatory memorandum.
In the appendices
guiding principles, settings and services, policy with organization and quality
improvement with research are recommended. This implies that adequate resources and funds must be made
available to promote the development and integration of palliative medicine
and care into healthcare services.
- World Health Organization
(WHO), Cancer Unit supports the development of palliative care services as basic
elements of any national or regional cancer comprehensive program. In 2004
the World Health Organization has published two booklets: “The solid
facts – Palliative care” and “Better Palliative Care for
Older People” to ensure the widest possible availability of
authoritative information and guidance on palliative care. The purpose of
both booklets is to provide a concise overview of the best available
evidence on the concept of palliative care. See Figure 4.
Fig. 4
WHO policy implications:
-
Policy makers must begin to plan now to meet the needs
of ageing populations for care at the end of life
-
Health care systems must change their focus from acute
care to the care of people living with and dying from a range of serious
chronic diseases
-
Policy makers must invest in providing publicly funded
palliative care services as a core part of health care and not as an “add on
extra”
-
Policy makers must take steps nationally to ensure
that unmet needs for end of life care are identified for all common diseases,
including cancer, ischaemic heart and cerebrovascular disease, chronic
obstructive respiratory disease, end stage liver and kidney disease, infectious
diseases and dementia
-
Policies need to identify people living with serious
chronic illnesses in widely different settings including the community, nursing
homes and hospitals including intensive care
-
Policies must also recognise the work of families and
caregivers and support them to help care for the patient and to cope with the
loss the illness brings for them
-
Public health policy must acknowledge peoples’ right
to high quality care at the end of life and to make decisions about their care
whatever the nature of the disease they suffer from
-
Policy makers should monitor where people who are
seriously ill wish to be cared for and to die
-
Policy makers need to promote the development of
palliative care skills in staff working across all settings, especially in pain
control and communication
-
Palliative care services must be co-ordinated to work across different settings of home,
hospital, in-patient hospice and other institutions
-
Policy makers need to invest in the funding of the
full range of effective palliative care services including specialist teams to
ensure that patients and their families have access to the services they need
-
Health policy makers need to ensure that national
systems are in place to monitor access for all groups in society to palliative
care
-
Health care organisations need to invest in local
systems for identifying vulnerable groups and for monitoring and improving the
quality of services they provide for their populations
-
Policy makers need to promote dissemination of good
practice in reaching vulnerable groups
-
Policy makers and decision-makers should reward health
care organisations that engage in audit and quality improvement schemes in
palliative care
-
Policy makers should encourage the dissemination of
examples of good practice and constantly review the success of these methods in
palliative care
-
Health care organisations need to develop and maintain
cultures that support health professionals to work well in teams to identify
areas of end of life care that might be developed or improved
-
Demonstration of innovative approaches and evaluation
of their merit in palliative care need to be widespread and encouraged
-
Health care organisations need to develop cultures and
working practices that allow the best use of the palliative care skills of
health professionals
(Publication requests on e-mail address: publicationrequests@euro.who.it
)
- European
Federation of Older Persons (EURAG) published “Making
Palliative Care a Priority Topic
on the European Health Agenda” – Promoting Campaign at EU Level,
January 2004.
EURAG
proposes to make palliative care a priority topic on the European Health
Agenda, which would best be achieved by a decision of the European Union. The
proposed draft of such a decision takes into account the roe log European Union
in the field of heath care and proposes the adherence to other recent summaries
of recommendations delivered by the Council of Europe’s Committee of ministers
to member states on the organization of palliative care.
(
www.eurag-europe.org/EURAG_PalliativecareProject_2004.pdf
)
- National
Hospice and Palliative Associations on the 2nd
Global Summit in March 2005 prepared
Korea Declaration on Hospice and Palliative Care, with clear
agreement on different activities in realm of palliative care national governments
should perform.
(Appendix 1)
Effective
measures in all relevant political fields in the national health care system
have to be supported to raise awareness about the needs of terminally ill and
the knowledge of possible solutions. The main factors involved in achieving
political commitment are as follows[27]:
- Identification of the importance of clinical improvement related to
widespread and common problems within the health care system; Pain is the
paramount example.
- High
levels of satisfaction on the part of patients and families.
This can have a major
impact at the managerial level. In a context where health care managers are
faced with problems of provider competition, low satisfaction with services and
conflicts over resource allocation, the introduction of high quality services
at moderate costs and high user satisfaction provides an important element of
recognition for policymakers.
- Highlighting
the efficiency and cost-effectiveness of palliative care within a
strategic approach.
The Catalonian model
shows a reduction in the use of emergency rooms, length of stay and the
increased prevalence of home deaths, together with a reduction in inpatient
care.
- New
values are added to the health care system, accompanied by wide
recognition and improved work satisfaction on the part of the
professionals; For example, the impact of new professional roles
associated with multidisciplinary teams, the perceived value of a
comprehensive approach, or the reduction of burnout.
- High
level of social and cultural regard;
This is associated with
a clear improvement in the quality of care, with broader discussion on the
ethical issues with better knowledge and insight, with the humanitarian values
associated with palliative care as well as with deeper and more personal
issues, for example, relating to individuals’ fear of suffering, pain,
isolation, and death in society.
As Gomez-Batiste et al who has
integrated palliative care into Catalonian health system has observed to obtain
political commitment to palliative care there has been often a lack of
consensus between individual health care divisions, for example, oncology
versus primary care versus a pain clinic. There has also been a lack of a
public health approach and adequate training. He suggests that all of these
issues must be addressed if coherent plans and broad agreement are to be
achieved.
3. 1. Status of palliative care in Europe and some respective other
countries
The development of hospice and
palliative care units in Europe has had an increasing impact on nearly every
country although each has had to address different challenges. Cultures,
economic, social and historical conditions vary across the Europe, but
palliative care has been adapted to meet these different needs and
circumstances.
The European Association of
Palliative Care is a well established major leader in drawing together health
care professionals of all the main disciplines involved in palliative care.
In the following paragraphs are two
brief presentations described about national palliative care in the United
Kingdom and in Catalonia, Spain to illustrate palliative care development in
its diversity.
3. 1. 1. Hospice and palliative care in United Kingdom
The modern hospice approach was
developed in the United Kingdom in the late sixties, as a new type of service:
an inpatient unit initially based within an independent facility and called a
hospice that also provided home care services, and was organized as
non-governmental, charitable organization. The early hospice movement was very
strongly connected with the community it served. It brought a new philosophy with values that directly addressed
patients and families needs in the last stages of life threatening diseases.
In the United Kingdom with a 52
million population, a total of 540,000 deaths occur every year. Like the
majority of European countries, diseases of the circulatory system are the
number one cause (42%) of deaths, and cancer is second (25%) [28].
Since the mid-1960s the hospice
movement in the United Kingdom has had a considerable impact on the care of
dying people. A very strong and wide spread hospice movement laid the
foundation for the concept of hospice care, named “palliative care”, which was
introduced also in hospitals and home support teams in health systems not only
in the UK but internationally[29].
Palliative medicine was recognized as a specialty by the Royal College of
Physicians (London) in 1987.[30]
From the National Survey 2003 – 2004[31]
on hospice care (children hospices and palliative care services are not
included in this report) there are 186 specialist units, all together with 2730
beds and a mean length of stay of 12.8 days. Each year around 38,000 new
patient admissions are recorded and 27,000 deaths in these units.
There were 417,064 home care visits from 354 home care teams, mostly
by community nurses (79%) and 427,766 phone calls (average 8 calls per
patient). Average care at a patient home was 111 days. Of patients cared by
home care services, only 28% died in hospital. All together 1200 full time
nurses are involved in home care services in the United Kingdom. The most
prominent data for home care palliative care suggest that about 96,000 new
patients are cared for each year, which is approximately 69% of the number of
patients dying from cancer.
In 228 day care units 32,500
patients received services in 2004.
There are 273 bereavement services
in United Kingdom with approximately 27,000 clients yearly and an average of
3.2 contacts per client, most of the time with a social worker.
Pain and symptom control were the
presenting complaints in over 50% of referrals and 40% required psychological
support. Social and financial problems were present in 7% of referrals. For 14%
of the referrals, carer support was one of the reasons for referral.
Places of death of patients cared
for by palliative care services in United Kingdom:
Home 27%
Palliative care unit 32%
Hospital 36%
Other
5%
By 1996, there were eleven hospice
units for children in the UK (St Christopher’s Information Service). Many of
the admissions into children’s hospice units are for respite care with a wide
range of complex and often rare life-limiting illnesses rather than for cancer.
Many children’s hospices are non-institutional with no resident doctor. The
care is family driven with a great emphasis on “respite care”. Some adult
hospices admit children (with employed pediatric nurses to care for children).
From 1994-2004 a slight rise in the
number of specialist units was recorded In the United Kingdom there is probably
a plateau reached for the overall specialist units within the existing
financial model at the moment. It is estimated that coverage is around 42% of
patients who would need palliative care in any form. Palliative care services
in United Kingdom cover mostly cancer patients (94% of all patients in
palliative care have cancer).
Until recently funding for hospice
units has been on an ad-hoc basis
(19). A few units have been totally self-funded using fund-raising initiatives
and charities to help support them, other units have been partially funded by
the government, and still others are fully funded and run as NHS hospice units.
In the mid-1980s the government, in acknowledgement of the success of the
hospice movement with its enormous support from the public, decided to fund the
work 50:50.This meant that for every Pound raised by hospice fund-raisers, the
government would match it “pound for pound”. More recently a special allocation
of Department of Health funds has been available to independent hospices. In
the literature there is data available for 1993 of a figure of 43 million
pounds.
In a long tradition of hospice and
palliative care service in the United Kingdom, an important knowledge and
research resource evolved for global use in the new evolving palliative care
systems worldwide.
Although the re has been great
success in the hospice and palliative care movement in the UK, there were some
difficulties in the aspects of:
-
standard
of care (in different parts of United Kingdom there are different standard
documents developed),
-
planning,
-
equity;
more than 94% of patients cared for in palliative care services have cancer,
patients with another diagnosis do not have equal access to palliative care,
-
majority
of patients are catholic, proportionally to the population not enough patients
from other religions,
-
accessibility,
-
regimen
of financing;
Only recently the development of
public health palliative care services is supported by the UK government.
3. 1. 2. Palliative Care in
Catalonia, Spain
Catalonia has a total of 6,200,000
inhabitants, with approximately 52,000 deaths per year, with mortality rate for
cancer 13,000 deaths per year (25 %).
In 1989, the Catalonian Ministry of Health and the WHO Cancer Unit initiated a formal co-operation to design and develop a WHO demonstration project on the implementation and development of palliative care in Catalonia[32]. At the beginning there were only two palliative care services present in Catalonia. The project included several measures:
- an improvement in professional and structural resources
- training
- policies to make opioids more easily available
- a revision of accreditation and standards
- a specific financial system
- legislative measures
- evaluation of results
After five years there were 21
departments of palliative care services with 350 palliative specialist beds and
18 palliative care teams in hospitals. There were an additional 44 home care
support teams. This network of palliative care services covered 38.5 % of
cancer patients in need for palliative care. Geographical coverage was 80%. The
use of opioids increased from 3.5 kg/million/year to 11.4 kg/mil/year[33].
As it is showed in Figure 5, by 2003[34]
there were 50 departments of palliative care services, with 523 beds in
Catalonia. There were 52 palliative home care teams achieving “coverage” for
67.1 % of cancer patients, and geographical coverage of 95 %. Opioid
consumption rose to 17 kg/mil/year. Death at a patient’s home occurred in 2003
in 61 % of all deaths (home deaths in 1989: 31 %).
Fig. 5
| Year | 1989 | 1995 | 2003 |
| Palliative care units | 2 | 21 | 50(9,3 units/mil) |
| Palliative care beds | 0 | 350 | 523(87,2 beds/mil) |
| Home care support teams | 0 | 44 | 53 (8,8 teams/mil) |
| Opioid consump. (kg/mil) | 3,5 | 11,4 | 17 |
| % of deaths at home | 31 | 60 | 61 |
Authors also report the dramatic
fall in the use of hospital and emergency resources in the last 5 weeks of
life, and the increasing use of home care and community resources.
The principles of this program were
to consider palliative care as a public health concern, with the aims of
coverage for both cancer and non-cancer patients. The combined measures
included the implementation of a wide range of specific services with a
district wide approach. All these developments were possible because of the
extensive education and training of all levels of the health system and strong leadership of experts with
government support from the public
financing system. With this project community based palliative care was
emphasized and also the national health system promoted the development of
non-acute hospital settings based in socio-health centres, which have
rehabilitation and long-term resources.
The results demonstrate both, effectiveness in pain control, and
strong efficiency in the provision
of care, based on the dramatic change in the pattern of use of resources:
- reduction of the length of hospital stay,
- less frequent use of hospital emergency facilities,
- increase in home care,
- high patient and family satisfaction level,
- cost reduction;
Observing the implementation process
of the Catalonian project is useful for all suggesting newly developed national
policies:
Successful results of
policies of the Catalan model:
-
Achievement
of very high coverage of patients, especially of cancer patients (more than two
thirds of cancer patients are cared for by specialist palliative care teams,
mostly in the last weeks of life);
-
With
extensive training activities good palliative care practice has been achieved
at least when evaluated by indirect indicators and evaluation of satisfaction
of patients and their families;
-
Development
of non-acute settings in socio-health centres with geriatric and chronically
ill patients;
-
The
high geographical coverage;
-
Morphine
widely used in the late stages of life in patients receiving palliative care;
-
Reduction
in the length of stay in acute hospitals, reduction in the use of emergency
facilities;
-
High
involvement of home care support teams;
Areas for
improvements of the Catalonian model at the present time:
-
The
implementation of resources at hospital settings has been slow, and there is
still a need for more palliative care departments in hospitals to care for
complex patients not only with cancer, but also with other chronic diseases;
-
Support
to prevent professional burnout;
-
More
social workers and psychologists are needed;
-
Promotion
of education and training in medical schools, recognition of palliative care as
a specialization;
-
Promotion
of research, with more emphasize on the nursing, social, emotional, spiritual
and ethical aspects in palliative care;
-
Systematic
evaluation of the effectiveness, cost/effectiveness, efficiency, and
satisfaction;
With these results Catalonia is
presently one country in Europe with the most developed network of palliative
care services with accessibility and coverage achieved. The Catalonian model
shows the importance of government involvement in a strategically planned
implementation of palliative care services on all levels of the health care
system. Rational planning with public health based policy, with a systematic
implementation of specific resources and training achieves good palliative care
goals, improves geriatric care, with effectiveness, efficiency, and
satisfaction.
4. Status of palliative
care in Slovenia
Slovenia is a Central
European country with approximately 2 million inhabitants. There are around
19,000 deaths a year. The life expectancy at birth is 73.2 years for men and
80.7 years for women[35].
The three main causes of death in Slovenia are diseases of circulatory system,
neoplasm and diseases of respiratory system[36].
Slovenia is a country with a middle size morbidity and mortality rate caused by
cancer. The leading cancer for the male population is lung (19% out of all
cancer sites) and for the female population is breast (21%). Approximately 52 %
of all deaths occur in hospitals and other institutions, and 48% occur at home
(Figures 4 and 5). The financing of health care is based on a social security
system, which covers practically the entire population.
Fig. 4
Place of death in Slovenia in 2002
Source: Zdravstveni statisticni letopis 2002,
Institut za varovanje zdravja R Slovenije.
Place of death Number of deaths %
Health care institutions 10,993 52.2 %
Home (or other places) 7,595 47.8 %
Fig. 5
Place of death in health care institutions in
2002
Source:* Zdravstveni statisticni letopis 2002,
Institut za varovanje zdravja R Slovenije.
**Skupnost socialnih zavodov R Slovenije
Institution Number of deaths %
Hospitals* 7,781 41.3%
Nursing homes** 3,212 17.2%
The hospice movement,
with home service and education programs, started in the middle of the 1990’s
in Ljubljana, the capital city of Slovenia. It is now present in seven cities
in Slovenia, in three of them, Ljubljana, Maribor and Celje their palliative
care teams offer not just education to the public and volunteers for home
support for the families, but a whole range of palliative home care services.
This includes palliative nursing care, social and psychological care for
patients and their families at their homes. Nurses in each hospice in
Ljubljana, Maribor and Celje are paid by the National Health Insurance Company.
A physician is not yet involved in the hospice care professionaly. Both
hospices together, provide home care for around 500 patients annually. They
organize of workshops, seminars and presentations. There are 104 volunteers
working in the hospice organizations at the moment. New groups of volunteers are
trained every year. Bereavement services are organized in all hospices, and
there is also a traditional bereavement children’s group holiday every summer.
In Ljubljana there is
already a house available for inpatient hospice, but it needs to be renovated
or rebuilt. It is planned to start functioning in late 2006 or early in 2007.
New regional organizations of hospice in different parts of Slovenia are
developing, particularly for education on psychosocial topics for volunteers
and the public. Hospice movement in Slovenia serves as an important model of
hospice and palliative care to be implemented into national health system.
Pain programs, like in other
countries, started much earlier in most hospitals than the palliative care
programs. There are outpatient pain clinics in nearly every hospital in
Slovenia.
The University Clinic of
Respiratory and Allergic Diseases Golnik has established a palliative care unit
within a long-term care department of the hospital. There is a palliative care
team with a physician four nurses, social worker, psychologist and volunteers.
There are three more acute-hospitals with established long-term care
departments where palliative care units with corresponding palliative care
teams are planned.
The major institution for
cancer patients, Oncology Institute Ljubljana, has established a consult team
for palliative care.
General practitioners
and community nurses are not involved in organized palliative care initiatives
yet. A particular concern is that Slovenia lacks around 200 primary care
physicians and even more nurses at the present time. The problem of palliative
care implementation on the primary care level needs to be closely examined, and
solutions wisely proposed together with a sensitive evaluation of the possible
reality.
In co-operation with a
variety health care institutions and Palliative Care Development Institute,
Ljubljana, in the last few years, regular education on different topics related
to palliative care has been organized and become part of the curriculum for
family medicine, public health and oncology offered by the Medical Faculty
Ljubljana. Traditional courses and seminars are also organized for health care
professionals of all disciplines involved in the emergence of palliative care
in Slovenia. Two-weekend experiential workshops on palliative care
communication have been specially developed and health care professionals,
especially physicians, are often sent to study abroad (Salzburg, Stockholm,
Manchester, Sheffield and Poznan).
The Palliative Care
Development Institute was founded in 2000 as a training and resource centre,
education, research and advocacy. The Institute plays a crucial role in the
strategic planning and policy development of palliative care on the national
level. Through co-operation with the Ministry of Health, a National strategic
plan for palliative care has been prepared and is in the process of wide
discussion, confirmation and ratification. The National Committee for
Palliative Care at the Ministry of Health is overseeing and co-ordinating a
pilot study on palliative care implementation in the health care system.
The process of
developing standards of care for patients at the end of life is under way, but
still at an early stage in Slovenia.
Pain is the major symptom for
patients in need of palliative care and therefore drug consumption for pain
treatment is an indirect indicator of the development of palliative care. All
the essential drugs for pain relief are available in Slovenia, with a normal
procedure for prescribing. National guidelines for pain management have been
published in 1999, and have already been updated. The WHO-book on Pain and Symptom Management for Children with
Cancer has been translated into Slovenian. In addition to the guidelines, there
was a successful educational campaign organized to train doctors and nurses all
over the region on the basics of pain management. Fig. 6 shows total morphine
consumption in Slovenia from 1992 - 2003.
There was a sudden increase in
opioid consumption after 1998, most probably due to the activities listed
previously and new pain relief drugs available on the market. The decline in
last three years demonstrates the need
for regular extensive postgraduate education on pain management. As compared to
the rest of Europe, consumption of morphine in Slovenia is at the global mean
level, but under the average European mean level in 2003 (Fig. 7).
_____________________________________________________________________________
Fig. 7
A recent study of
quality of care at the end of life at the Oncology Institute, Ljubljana
presented at the International Conference on Palliative Care in Cancer,
Ljubljana [37], showed a
retrospective record analyses of quality of care for 145 patients in 2002 for
the last 6 months of life. The results suggest, that the documentation among
health care professionals is incomplete and co-ordination often inappropriate.
75% of patients received opioids, with successful treatment to the goal of mean
VAS 3 in 47 % of patients. The major weak points in the care of patients at the
Oncology Institute as compared to the literature were higher rates of
prescriptions for antibiotics, transfusions, and parenteral hydration in the
last days, and lack of evaluation of the common symptoms in palliative care
except pain (e.g. Breathlessness, nausea, vomiting, tiredness,…). No patients
received chemotherapy, albumin or vaso-active support in the last days of life.
In the documentation less data is available on other symptoms and especially
about psychosocial problems of patients and their families. No other symptoms
except pain were evaluated by a scale, so it was impossible to evaluate the
effects of treatment, as documented. From the study, it is more than obvious
how urgent it is to put palliative care standards in place. Extensive
professional training, a better documentation system and co-ordination among
all professionals in the health system is urgently needed.
Slovenia is one of the
few countries with a relatively low infection rate of HIV. Total number of
deaths from HIV/AIDS in period from January 1, 1989 to June 30, 2005 is 75. In
Slovenia there is at list 173 people infected with HIV, from those 43 developed
AIDS. The highest incidence of newly recognized infections with HIV was
12.5/mil inhabitants in 2004. The most affected group are homosexual men.
Prevention measures in the group of i.v. drug users are quite successful mainly
due to a variety of activities organized by different non-governmental
organizations. A decrease is reported in the incidence of AIDS and deaths from
AIDS due to better availability of very high quality anti retroviral therapies.
4. 1. Reasons for slow implementation of nationally organized palliative
care
The
possible reasons for the absence of nationally organized effective palliative
care program in Slovenia could be the historical development of the Slovene
society. There has been long subjugation of the country to another’s rule; our
independence began only in 1991. This situation through the centuries
contributed to the development of a closed national character. People are not
used to discussing and solving their problems publicly. The suicide rate in
Slovenia is one of the highest in Europe.
In
the period of socialism, death was pushed into the sphere of the private, and
the Church, which was competing for the public’s attention, would not enter the
private sphere[38]. There was
no interest in the development of public institutions, like palliative care
units in hospitals or hospices. There was a strict hierarchical organization of
the health care system, and the concept of team work was not developed.
Nursing, which is the most involved in the care of the dying patient, still has
little power because of its subordinate position within the health care system[39].
Medical
doctors, probably because of the lack of palliative care program during their
study and lack of organizational solutions, do not feel comfortable in the area
of palliation and rather emphasize the curative approach.
Finally,
there was a complete absence of financial support from the government for all
non-acute diseases (therefore also for the palliative care programs).
In conclusion:
· The incidence of chronic and progressive diseases in Slovenia compares to central European countries, but not to their level of palliative care development: palliative care is not organized nor sufficiently developed in the Slovene health care system;
· In Slovenia, like in the majority of European countries, the older population is increasing, needs for palliative care will become larger[40], [41];
· Statistical data about evaluation measures and quality of services in palliative care are not available, and therefore not very reliable qualitative and financial estimations of costs for existing initiatives of palliative care are possible;
Now is the appropriate moment for
the introduction of a model of organized palliative care into the health
system. Recently, health care reform is taking place in Slovenia and an
understanding in the health administration about the needs of society for
organized palliative care is present.
4.
2. Main issues and obstacles for
strategies for the implementation of palliative
care into national
health system
The main issues in palliative care for Slovenia are:
1. to develop common vision for palliative care for the people who need it now and for the growing population of elderly, who will need it very soon;
2. to produce common standards in palliative care;
3. to introduce regular undergraduate and postgraduate education;
4. to ensure better teamwork and continuity of care across all settings;
5. to introduce efficient clinical and managerial solutions to ensure better health outcomes and patient satisfaction;
6. to bring better understanding that every clinical decision is also a financial decision and therefore responsibility in the clinical management should be introduced;
The main obstacles for the implementation of organized palliative care are:
1. lack of knowledge and appropriate attitude among health care professionals;
2. lack of organizational motivation to reach better health and satisfaction outcomes;
3. lack of clearly defined common standards in palliative care;
4. lack of understanding of team work and continuity of care;
5. lack of the public understanding what palliative care is;
6. lack of economic analyses on end-of-life care:;
7. lack of governmental understanding of palliative care and its benefits;
8. lack of governmental recognition of the growing needs of patients with chronic and progressive diseases in the past, and therefore lack of financial incentives;
Common examples of attitudes
presenting direct barriers to palliative care development are:
- “We
are already providing this form of care.”
- “We
do not have enough money for this development.”
- “We
only need to train general practitioners.”
- “We
already are starting non-acute departments where nurses are offering care
to patients.”
- “In
tertiary hospitals we should not have this type of patients.”
- “Nursing
homes should provide such services.”
Such remarks are often heard and
illustrate a range of individual and institutional barriers and lack of
understanding of benefits which can be achieved. To respond to this situation a
combination of well trained palliative care teams with clear ideas and vision
on the one hand are needed, along with generic education and a change of
attitudes with the ability to build on earlier successes in order to achieve
worthwhile results.
As Gomez-Batiste et al[42]
observed, individual and institutional resistance might be very strong and it
is vital to understand the reasons that underpin it and work towards achieving
a consensus of views. This can help to distinguish between palliative care
services and for example, pain clinic or oncology services, in a context where
palliative care standards have been clearly defined. This is particularly
important where there is a political dependency of one service on another,
rooted in local power positions. Once a number of good initiatives are
underway, however, and this has been consolidated, local experience is
frequently the most effective rejoinder to criticism. It then becomes possible
to focus more on issues of extension and coverage.
4. 3. Assessment of needs
Baseline studies to assess needs
provide vital information on kinds of services that should be developed.
Objective assessment of needs and analysis of baseline context is also crucial
for effective monitoring of the results of a new initiative. We can use a
simple and pragmatic approach to estimate need in palliative care by Higginson
(www.kcl.ac.uk/palliative). It
has three components:
- epidemiology
- comparison
with services available
- effectiveness
and cost-effectiveness / national and local
Epidemiology
Epidemiology - numbers and causes of
death can give indication of need for palliative care, especially when coupled
with information on symptoms, emotional, social and spiritual problems (Fig.
8). With this approach we have to be aware of data inconsistencies and gaps
(e.g. recorded cause of death is subject of fashion, or can be inaccurate in
older people where there are multiple causes) and different diseases have
different patterns of progression. But this simple approach can provide us with
useful insight for planning and implementation purposes.
Fig. 8
There are roughly 20,000 deaths a
year in Slovenia and 25% are caused by cancer. From the Fig. 8 data we can
estimate the most frequent symptoms in the last year of life based on the work
of Higginson[43] (Fig. 9):
Fig. 9:
Epidemiological estimation of symptoms in the last year of life in Slovenia
Symptom Pts. with cancer Pts. with other terminal
illnesses
Confusion 1 600 5 550
Sleeplessness 2 550 5
400
Depression 1 900 5
250
Pain 4
250 10 050
Loss of appetite 3 600 5 700
Trouble breathing 2 350 7 350
Constipation 2 350 4
950
Vomiting 2 550 3 900
Patient anxiety 2 000 6 000
Family anxiety
2 500 7 500
In this estimation we must be aware
of the fact that patients often have many concurrent symptoms at the last days
of life.
Comparison with services available
Primary health care
Based on epidemiologic estimates, an
“average” general practitioner practice of 2 500 patients will have 24 deaths
per year or 2 per month of whom 20 would have a period of progressive illness.
All
patients in Slovenia have to have a general practitioner. When a person has a
life-threatening disease and wants to be at home during the end of life, that
person will have access to some home care nursing. There are limitations,
because the health care system cannot provide round-the-clock care at home.
Patients who are severely ill have to rely on family members for care in order
to stay at home. Family members can be paid their part time salary for two
weeks in order to take care of a dying father, mother, husband or wife.
Even if we know, that more than half
of deaths occur in hospitals, the mean stay in hospital is short. General
practitioners care for even more terminally ill patients on their way through
progressive illness who are frequently hospitalized only for short periods of
time, and spend most of the time at home.
Hospitals
A hospital serving an area of 25 000
would have 560 deaths each year, 1230 from circulatory diseases, 300 from
respiratory diseases, 60 from other diseases, where patients and carers would
benefit from palliative care.
Hospitals in Slovenia have 47% of
all deaths.
Nursing homes
In Slovenia nursing homes are governed by Ministry of Social Affairs.
Only small proportion of nursing services in each nursing home is governed by
the Ministry of Health. Medical care is most often provided by the regular
visits of family physicians from the regional primary health setting. It seems
that the highest category of nursing includes palliative care services, but no
direct measures of quality of care are available (Fig. 10).
Fig. 11
Nursing home
residents’ categories of nursing (from I to III)
Sourse: Skupnost
socialnih zavodov R Slovenije
In the global view, nursing
homes have a long history of attracting vigorous criticism of the quality of
care they provide[44].
There are no direct data available in Slovene nursing homes about quality of
palliative care. Report on staff shortages, coupled with widely reported
nursing home incident in October 2003
in a resident home Crni les (inappropriate measures of nursing for several
residents), provide some strong evidence that organizational and educational
development in nursing homes for palliative care would be needed.
Fig. 11
Percentage of deaths in nursing homes from all
residents
Source:
Skupnost socialnih zavodov R Slovenije
In planning it is therefore important to emphasize the importance of
connecting or linking palliative care in primary care with specialist
palliative care in hospitals.
5. Evidence of effectiveness
of palliative care
5. 1. Common protocol
The importance of the
quality of clinical care is emphasized lately in new plans of health systems.
The objective of clinical governance is to ensure that the patient receives the
best quality of care throughout their journey and to learn from patient
experiences in order to provide services that better meet patient need.
Clinical pathways (CP) are a tool that can help to meet the requirements of the
clinical governance agenda, providing demonstrable standards and outcomes of
care for patients. CP is defined as “systematically developed statements to
assist both practitioner and patient decisions about appropriate care for
specific clinical circumstances[45].
The development of
clinical guidelines has been driven by concerns over the rapid escalation of
care costs and quality of care. Many attempts and a lot of energy have been put
into all kinds of different guidelines for better quality of clinical practice
but have been only moderately successful or not at all.
The Liverpool Clinical
Pathway (LCP) is currently incorporated in the Cancer Collaborative project in
the Merseyside and North Chesire Cancer Network. Outside England it is being
implemented in different hospitals and home care system in Netherlands, New
Zealand and recently also in Sweden.
LCP -
· offers clear criteria when palliative care for the patient can start and end (identification of patients for palliative care)
· brings better outcomes and satisfaction for the patients,
· improves teamwork,
· improves communication between clinicians and patients/their relatives,
· educates clinicians and prevent omissions or duplication of services
· implements evidence based knowledge (or standards) into practice
· keeps patients and their families informed
· offers the same level of standard for the same type of services in all settings
· offers better education opportunity
· improves communication among different professions and among different settings
· offers easily comparable outcomes and quality measures
· supports effective planning
5. 2. Classifying of palliative care – some
options
Some consideration should be given
in determining the potential basis for the classification of palliative care in
the immediate future in Slovenia[46]:
➢
The diagnosis related groups (DRG)
classification is now being used in Slovenia for acute inpatient care. It
defines about 665 types of complete inpatient episodes – that is, it classifies
on a per case basis. Its main weakness is that it was not designed to
categorize palliative care: it relies heavily on diagnosis and surgical
procedures, and neither of these variables is a good discriminator of
palliative care needs or care processes.
➢
Resource Utilization Groups (RUG) were
designed mainly to categorize inpatient days in specialized nursing and
intermediate care facilities in the United States. The main variables are level
of dependence for activities of daily living, broad categories of medical and
nursing care, and the level of provision of general kinds of therapy. Several
versions have evolved: RUG-3, and splits on activity of daily living (ADL) from
4-18, and RUG-3 ADL index. In summary RUG -3 is more relevant to palliative
care than the DRG classification, but it is unable to effectively describe or
capture the specific care needs of palliative care patients, except in terms of
activities of daily living.
➢
The most widely used classification in
Australia is called Sub-acute and non-acute inpatient (SNAP) classification,
which is designed to categorize days of inpatient care rather than complete
inpatient episodes. It took account of work in developing the DRG and RUG-3
classifications, and then extended the basic ideas specifically to palliative
care.
➢
In Catalonia a new classification system is
being developed in connection with national standards of practice and the
specific organization of non-acute inpatient and mobile outpatient services in
palliative care[47].
It is probably that the potential
for a solid basis for further developments in Slovenia with SNAP classification
from Australia and the experiences from Catalonia will occur.
The collection of data for
classifying purposes can also be an efficient information for clinical
management and planning and for measuring health outcomes.
5. 3. What are the specific
challenges of implementing the clinical pathway?
There are many challenges in the process of implementing the clinical
pathway. The most difficult dilemma for clinicians and nurses is to diagnose
dying or when to start using the CP. This is particularly difficult when a
patient is acutely ill, or when the disease trajectory may be unpredictable, or
in a post-operative state. It is also a very unrealistic to expect to achieve a
fixed number of patients in the CP in a short period of time. We have learned
that there can be valid reasons why CP was not used in many patients: in the
case of sudden death, a cardiac arrest, or in case where it was hard to
diagnose dying. Sometimes it was simply that a member of the staff in charge,
or on duty over the weekend was not familiar with the CP tool.
Diagnosing dying (the last hours or days of life) is often a very
complex process. In cancer patients, the following signs[48]
are often associated with the dying phase:
- The
patient becomes bed bound
- The
patient is semicomatose
- The
patient is able to take only sips of fluid
- The
patient is no longer able to take oral drugs
This predictability of the dying phase is not always as clear in other
chronic incurable diseases.
We did not realize how costly and time consuming this project would be.
A careful, sensitive evaluation of every new patient was needed as well as
personal training and involvement with the coaching staff on how to use the
tool. Most of the time staff found it very difficult to accept the idea that
the CP could replace all other forms of documentation, so they decided to
complete both. This meant a lot of additional work for staff and negative
attitudes were encountered occasionally.
6. Discussion
Palliative care is an important
public health issue. The goal of palliative care is the improvement of the
quality of care for patients with advanced non-curable disease and support of
their families. Public health aims include coverage, equity, quality,
comparability, and the introduction of changes into the organization of health
care services. Translating scientific evidence into policy and action is a
complex process.
Standards in palliative care are the
priority in palliative care development and a precondition for identifying best
practice. With the quality indicators from the standards two main purposes will
be met: quality improvement (internal use for monitoring or continuous quality
improvement) and accountability (external use by regulators, health care
purchasers, or consumers). For example for quality indicators of pain, there is
a standard that requires all national health institutions to demonstrate that
they adequately monitor and manage the pain of patients. Similar indicators
should be developed for other common physical, emotional, psychological and
spiritual problems. An important aspect of demonstration and validation is
monitoring for potential unintended consequences (e.g. patients are sedated
contrary to their preferences) to improve accountability statistics.
To apply standards into practice the
clinical pathway is the best tool to change practice for better meeting the
needs of the dying and their families. The process of implementing, the CP
requires education, team work and awareness or even change of attitude toward
dying.
Palliative care reform expert Joanne
Lynn[49]
suggests that the reform in palliative care require changes in regulation,
payment, education, and standards of care at all levels of the health care
system. Especially in the early days of palliative care development within a
country, clear professional leadership is crucial. In most cases the
synergistic combination of well-trained, strongly committed and respected
professional is a key factor and determinant of success. The involvement of
individuals with clinical, educational, planning and managerial abilities is
vital. Political will and leadership is critically important.
7. Possible strategies for
palliative care in Slovenia
Option # 1
No change in the current government policy or strategy;
This would most probably lead to a
variety of very slowly evolving and differently formulated palliative care
services on different levels of the health care system, not being integrated
into a useful network of the path of every patient, without proper quality
standards, coverage, equity, possibilities for quality measures and planning
towards meeting needs. It would definitely be a very unsatisfactory experience
for patients and their families, and health care professionals as well.
It would also be possible to expect
similar events of misuse and exploitation of the circumstances like the events
in Hotel Crni les, in the 2001- 2003, as reported in the media. Inappropriate
care and financial exploitation was discovered in the situation of absence of
organized palliative care on the national level.
Option # 2
Incremental or modest policy change; the development of palliative care
units within nursing departments in every large hospital.
If new governmental policy helps
alleviate some of the aspects of the current problem, like supporting the
development of long-term nursing departments in hospitals only and not acting
strategically on all levels of health care where patients die, very similar
results to the first option can be expected. Public health goals (coverage,
equity, quality standard care, efficiency and efficacy) could not be reached in
this way.
Option # 3
Radical policy alternatives;
By applying bold changes, most if not all of the policy goals could be
achieved. To guide
reforms, many participants in health care should embark on an era of
innovation, evaluation, and learning. Among those are clinicians, educators,
insurance house, provider organizations and government agencies together with
the development of palliative care teams and patient advocacy organizations.
8. Recommendations
Government agencies urgently need to
encourage the implementation of palliative care with funding, and
evidence-based regulation incentives. We propose a step-by-step approach for
the future policy strategy for palliative care across all settings:
Short term strategies:
Building services