Abstract
Abstract
Access to palliative care has been advocated as a human right by international associations, based on the right to the highest attainable standard of physical and mental health. It has been argued that failure to provide palliative care for patients facing severe pain could constitute cruel, inhuman, or degrading treatment.
Yet the governments of many countries throughout the world have still not acknowledged a human right to access palliative care for all those who need it. The European Association for Palliative Care (EAPC), the International Association for Hospice and Palliative Care (IAHPC), and Human Rights Watch (HRW) discussed this at the EAPC congress in 2011 and formulated the Lisbon Challenge: Governments must: (1) put in place health policies that address the needs of patients with life-limiting or terminal illnesses; (2) ensure access to essential medicines, including controlled medications, to all who need them; (3) ensure that health care workers receive adequate training on palliative care and pain management at undergraduate levels; and (4) facilitate and promote the implementation of palliative care services as part of available health services.
Background
Palliative care has been proven to offer effective interventions for these patients3,4 as well as for other patients with end-stage chronic obstructive pulmonary disease (COPD) or renal failure, neurological diseases such as multiple sclerosis or amyotrophic lateral sclerosis (ALS), or even late-stage dementia. 5 The benefits of palliative care are not even restricted to end-of-life care, as an early integration of palliative care has been proven to improve quality of life and reduce the need for burdensome aggressive treatments. 6
For developing countries, HIV/AIDS has been a major cause of death, and even though international aid programs have made antiretroviral therapies widely available, a considerable percentage of patients who receive treatment continue to experience pain and other debilitating symptoms. Some people living with HIV do not respond to treatment or become resistant; others may not be able to follow the rigid compliance required for effective antiretroviral treatment. These patients may suffer from pain, fatigue, and other symptoms caused by the disease; concurrent comorbidities; or complications of the treatment.
In addition, other infectious diseases such as malaria and tuberculosis, though curable in most cases, may progress to incurable stages, and patients then should be referred to palliative care. The World Health Organization (WHO) recently has emphasized the need to offer palliative care for patients with multidrug-resistant tuberculosis who no longer qualify for active treatment. 7 Awareness of palliative care needs is lacking for some other indications such as rabies. 8
The implementation of palliative care services has been shown to make an impact in developing countries, alleviating suffering in patients with HIV/AIDS or other diseases. 9 Systematic reviews of palliative care interventions have shown accumulating evidence of higher quality of life with palliative care interventions and increased satisfaction with care.10,11
In spite of the proven effectiveness, access to palliative care is limited or nonexistent in many countries. It is mostly in developed countries that palliative care is included in health care systems; most developing countries have few or no palliative care services available. 12
Considering the needs of patients with life-threatening disease and the effectiveness of palliative care for alleviating these needs, lack of available palliative care causes unnecessary suffering in millions of patients every year. Suffering from life-threatening disease has been made visible in a recent documentary, Life before Death. 13 In this film, patients from 11 countries give evidence of the burden they face and the despair that unrelieved suffering is causing.
As palliative care can effectively relieve this suffering and can be provided at relative low cost, access to palliative care has to be considered a human right. In cases of particularly severe suffering, failure to provide palliative care may constitute cruel, inhuman, or degrading treatment. 14
Cruel, inhuman, and degrading treatment is prohibited under article 5 of the Universal Declaration of Human Rights proclaimed by the United Nations (UN) in 1948, 15 as well as article 7 of the International Covenant for Civil and Political Rights. 16 Failure to ensure access to palliative care also violates the human right to the enjoyment of the highest attainable standard of physical and mental health, as specified in article 12 of the International Covenant on Economic, Social and Cultural Rights. 17 The UN covenants are mirrored in several regional treaties. 18
Different activities and initiatives for palliative care and pain relief as a human right have been launched in recent years and have raised the awareness for the issue. It has been international organizations that have emphasized palliative care as a human right. National governments or competent health authorities regulating access to essential medicines have not acknowledged the idea yet.
Professional associations have supported the discussion of palliative care and pain relief as a basic human right in a number of declarations. The Worldwide Palliative Care Alliance (WPCA) published a call for access to pain relief as an essential human right, and in 2009 the International Association for Hospice and Palliative Care (IAHPC) produced the Joint Declaration and Statement of Commitment on Palliative Care and Pain Treatment as Human Rights. 20 The Panama Declaration launched by the Federation of Latin American IASP (International Association for the Study of Pain) Chapters proclaimed pain treatment and the application of palliative care as human rights in 2008. 21 An overview of the international covenants and the support from professional associations is available from the Open Society Foundation. 18
Access to palliative care for all, in correlation with human rights, requires a change of palliative care development policy from the development of specialist services to a public health approach. This means that health care professionals working in primary care have to be trained and motivated.
Once this is achieved, however, palliative care offers a unique model for innovative health and social policies as described in a recent report to the Parliamentary Assembly of the Council of Europe. 22 Palliative care offers a nonambiguous focus on patients' preferences together with a holistic approach combining, among others, knowledge (for example, on symptom relief), skills (f.e. on communication), and attitudes (f.e. to encounter each patient as an individual person with a rich history).
Representatives of major international palliative care organizations met at the 12th Congress of the EAPC in Lisbon in June 2011 to discuss the lack of acknowledgement of access to palliative care as a human right and the need for action. In the discussion, four major challenges were noted that need to be addressed (see Box 1).
Box 1: The Lisbon Challenge
Based on international covenants and on the need of suffering patients who are not able to access adequate palliative care, palliative care experts from the European Association for Palliative Care and the International Hospice and Palliative Care Association request national governments to act in order to establish access to adequate palliative care as a human right.
1. Governments must develop health policies that address the needs of patients with life-limiting or terminal illnesses.
– Governments must develop comprehensive health care policies which guarantee that care can be provided throughout the course of a lifetime, from birth to death.
– Governments must ensure that the laws provide support to the relatives of patients during the time of care and after the time of death.
2. Governments must ensure access to essential medicines, including controlled medications, to all who need them.
– Governments must identify and eliminate unduly restrictive barriers which impede access to controlled medications for legitimate medical use.
– Governments must ensure that they develop an appropriate system to develop their estimates to ensure that availability is guaranteed throughout the year
– Governments must ensure that they establish safe and secure distribution and dispensation systems so that patients can access the opioid medications regardless of their prognosis, place of treatment, or geographic location.
3. Governments must ensure that health care workers receive adequate training on palliative care and pain management at undergraduate and subsequent levels.
– Governments must adopt the necessary changes in the curricula of health care careers (medical, nursing, pharmacy, psychology, etc.) at the undergraduate levels to ensure that all health care workers obtain at least basic knowledge about palliative care and are able to provide it to patients regardless of the health care systems level in which they seek care.
– Governments must support the development and implementation of postgraduate and specialty palliative care programs so that patients with complex cases can receive appropriate care.
– Governments should ensure that adequate continuing education courses in palliative care are available to existing health care workers.
4. Governments must ensure the integration of palliative care into health care systems at all levels.
– Governments must design and develop plans to create and implement palliative care units, groups, and programs according to morbidity and mortality indicators, and population dispersion data.
The Lisbon Challenge resolution is based on the Lisbon meeting and carried forward by the European Association for Palliative Care and the International Hospice and Palliative Care Association in collaboration with other organizations.
What to Do
EAPC and IAHPC have formulated the Lisbon Challenge resolution as the basis for joint action. The Lisbon Challenge initiates a medium-term plan. The objective of the action plan is to obtain support for palliative care as a human rights issue from major international organizations and forums such as the Council of Europe, the World Health Assembly, the World Medical Association, and the International Council of Nurses.
This resolution includes a call for action. The Lisbon Challenge defines the starting point for this action plan. The plan for joint action will lead up to the 13th Congress of EAPC in Prague in 2013 which has a major focus of access to palliative care as a human right.
The EAPC will support activities related to the Lisbon Challenge via its website and social media resources (eapcnet.wordpress.com; www.facebook.com/EAPC.Onlus; twitter.com/#!/EAPC.Onlus). A toolkit is available for national work groups and advocates of palliative care who want to introduce change and set up a national action plan. This toolkit includes (1) compilations of background information from the EAPC Task Force on Development of Palliative Care,23,24 the Open Society Foundation, 18 and Human Rights Watch;25,26 (2) WHO guidelines on ensuring balance in access to controlled medicines; 27 and (3) a joint survey of EAPC and the European Society of Medical Oncologists (ESMO) on formulary availability and regulatory barriers in Europe. 28 The WHO guidelines include a checklist that can be used to assess barriers in the national regulations and legislation.
Call for Action
Ensure access
The national palliative care associations are asked to review their national laws and regulations on the use of controlled medications, using the WHO-ATOME (Access to Opioid Medication in Europe) Guidelines (some participants may need the guidelines translated into their own language). They should also establish a working relationship with their national competent authorities in order to bring attention to their governments on this issue. The EAPC/ESMO survey on availability of opioids and the follow-up to this survey currently in progress may be used to support this discussion.
Develop health policies
The national palliative care associations are asked to review their national health care laws and policies, to identify if there are palliative care provisions or specific laws related to palliative care. If possible, they should also check whether funds are earmarked for palliative care, as policies in some countries refer to palliative care rhetorically but do not offer any funds.
Provide training
The national palliative care associations are asked to describe the number of palliative care courses and hours allocated to palliative care at the undergraduate level, as well as the number of postgraduate courses and specialties available in their own countries. A survey on educational activities planned by the Task Forces on Development and on Education of EAPC will provide the background data for this activity.
Project partners can suggest curricula for the different specialties. A white paper on education in palliative care describing core competencies and special requirements for different professions and specialties has been remitted by EAPC and is currently in preparation.
Ensure implementation
The national palliative care associations should identify the number of palliative care units, programs, and professionals in their countries. The EAPC Atlas has described this information for the European countries. 29 More recently a survey from the Worldwide Palliative Care Alliance has compiled similar data worldwide. 12
Conclusion
The Lisbon Challenge calls on national palliative care associations for action. It combines expertise and support from EAPC, IAHPC, and other partners and will provide excellent opportunities for advocacy work, with a patient-centered approach.
The national associations should communicate and contribute to the preparation of the 13th EAPC Congress in Prague in 2013. The activities will be collected in case studies for the different countries. Some countries will be identified as examples, and the stakeholders in these countries will be asked to describe the activities related to the objectives at the Prague congress in 2013. These countries will be used for national and international media activities in preparation for the Prague congress.
Let us join forces in advocating for access to palliative care as a human right in developing and developed countries, in Europe and other continents, in a joint action.