PALLIATIVE CARE AS A HUMAN RIGHT

Diederik Lohman, Duncan Wilson, Joan Marston

Ensuring the availability of palliative care is not just an ethical obligation of health systems or of good medical and public health practice, it is also an obli-gation under international human rights law . Nearly all countries in the world have signed on to one or more treaties that recognize the right to the highest attainable standard of physical and mental health¹ .

The right to health has been authoritatively interpreted to include palliative care . For example, the United Nations Committee on Economic, Social and Cultural Rights, the independent body charged with monitoring compliance with the right to health under the International Covenant on Social and Eco-nomic Rights, has clarified that the right to health is an inclusive right which extends to timely and appropriate “preventative, curative and palliative health services .” The committee has also called for “attention and care for chronically and terminally ill persons, sparing them avoidable pain and enabling them to die with dignity .”²

The right to health requires that countries take steps to the maximum of their available resources to ensure that health facilities, goods and services, including those required for palliative care, are:

• Available: in sufficient quantity, including trained health workers and essential medicines;

• Accessible: on the basis of non-discrimination (including in different regions of the country), economically, physically, and on the basis of access to information for health;

• Acceptable: in that they respect medical ethics and are culturally appro-priate; and sufficient;

• Quality: scientifically and medically appropriate and of good quality, including skilled health workers and approved and unexpired medicines . In recognition that states have different levels of resources, each country must “take steps… to the maximum of its available resources” to progressively achieve the full realization of the right to health (known as progressive

realiza-1 . The right to health is guaranteed in a wide range of international and regional human rights treaties including, for example, the International Covenant on Economic Social and Cultural Ri-ghts, (in Article 12) and the Convention on the Rights of the Child (in Article 24) . The latter treaty has been ratified by every country in the world with the exception of Somalia and the United States . See http://indicators .ohchr .org/

2 . UN Committee on Economic, Social and Cultural Rights, General Comment Number 14, The Right to Health, (2000), UN Doc . E/CC .12/2000/4, para . 34 .

tion)³ . High-income countries will generally have to provide health care services at a higher level than those with limited resources, but all countries are expected to take concrete steps toward increased services .

The UN Committee on Economic, Social and Cultural Rights has identified certain core obligations that are so fundamental that states must immediately prioritize them . These include obligations:

• To ensure the right of access to health facilities, goods and services on a non-discriminatory basis, especially for vulnerable or marginalized groups;

• To provide essential medicines, as by the World Health Organization (WHO) in its Model List of Essential Medicines;

• To ensure equitable distribution of all health facilities, goods and services and;

• To adopt and implement a national public health strategy and plan of action, on the basis of epidemiological evidence, addressing the health concerns of the whole population^{4 .}

The Committee lists the obligation to provide appropriate training for heal-th personnel as “of comparable priority .”⁵

These core obligations correspond closely to the recommendations of the WHO . In its 2014 report to the World Health Assembly (WHA), the WHO recommended that governments formulate and implement a number of specific policies that it considers essential for expanding palliative care, including:

• Health system policies to ensure the integration of palliative care into the structure and financing of national health care systems at all levels of care;

• Policies for strengthening and expanding human resources, including education and training of health professionals, in order to ensure ade-quate responses to palliative care needs, together with training of volun-teers and education of the public;

• A medicines policy in order to ensure the availability of essential medi-cines for the management of symptoms, including pain and psychologi-cal distress and, in particular, opioid analgesics for relief of pain and respiratory distress and;

3 . International Covenant on Economic Social and Cultural Rights, adopted by General Assembly resolution 2200A (XXI) of 16 December 1966, http://www .ohchr .org/EN/ProfessionalInterest/

Pages/CESCR .aspx (accessed August 6, 2013), art . 2(1) .

4 . UN Committee on Economic, Social and Cultural Rights, General Comment No . 14, para . 43 . 5 . Ibid ., para . 44 .

• A policy for research into assessing the needs for palliative care and identifying standards and models of service that work, particularly in limited resource settings .

The WHA resolution on palliative care unanimously adopted on May 23, 2014, closely mirrors these recommendations⁶ .

Apart from proactive steps to meet these core obligations, countries must also “refrain from interfering directly or indirectly with the enjoyment of the right to health .”⁷ In other words, states may not deny or limit equal access for all persons, enforce discriminatory health policies, arbitrarily impede existing health services or limit access to information about health . Applied to pallia-tive care, this obligation means that states may not put in place medicine control regulations that unnecessarily impede the availability and accessibili-ty of essential palliative care medications such as morphine and other opioid analgesics .

It is important to note that a person does not lose their right to health when they receive a poor diagnosis or prognosis . In other words, the fact that someo-ne can no longer be cured does not mean that he or she ceases to have a right to adequate health care services . The Committee on Economic, Social and Cultural Rights has held that people are entitled to a “system of health protection which provides equality of opportunity for people to enjoy the highest attaina-ble level of health,”⁸ including chronic or terminal illness . The Committee has called for an integrated approach to the provision of different types of health services that includes elements of “preventive, curative and rehabilitative health treatment .”⁹ It has also been held that investments should not disproportiona-tely favor expensive curative health services, which are often accessible only to a small, privileged fraction of the population, rather than primary and preven-tive health care benefiting a far larger part of the population¹⁰ .

Similarly, the UN Committee on the Rights of the Child, the UN body responsible for monitoring the Convention on the Rights of the Child, has recognized that “children are entitled to quality health services, including pre-vention, promotion, treatment, rehabilitation and palliative care services . At the primary level, these services must be available in sufficient quantity and quality, functional, within the physical and financial reach of all sections of the

6 . WHA resolution 67 .19, “Strengthening of Palliative Care as a Component of Comprehensive Care throughout the Life Course,” May 14, 2014, http://apps .who .int/gb/ebwha/pdf_files/

WHA67/A67_R19-en .pdf (accessed June 26, 2014) . 7 . Ibid ., para . 33 .

8 . UN Committee on Economic, Social and Cultural Rights, General Comment No . 14, para . 8 . 9 . Ibid ., para . 25 .

10 . Ibid ., para . 19 .

child population, and acceptable to all .”¹¹ Meanwhile the Committee on the Elimination of All Forms of Discrimination against Women recommended that states adopt a comprehensive health care policy aimed at protecting the health needs of older women, “including care that allows for independent living and palliative care .”¹²

The right to health is not the only right that affords protections for people with life-limiting illness . The right to be free from torture, cruel, inhuman, or degrading treatment or punishment does so as well¹³ . Apart from prohibiting the use of cruel, inhuman, or degrading treatment, the right also creates a posi-tive obligation for states to protect persons in their jurisdiction from such treatment¹⁴ . This obligation includes protecting people from unnecessary pain related to a health condition . Manfred Nowak, then UN Special Rapporteur on Torture, Cruel, Inhuman or Degrading Treatment or Punishment (an indepen-dent expert who reports to the UN Human Rights Council on these issues) wrote in a joint letter with the UN Special Rapporteur on the Right to Health to the Commission on Narcotic Drugs in December 2008:

“Governments also have an obligation to take measures to protect people under their jurisdiction from inhuman and degra-ding treatment . Failure of governments to take reasonable mea-sures to ensure accessibility of pain treatment, which leaves millions of people to suffer needlessly from severe and often prolonged pain, raises questions whether they have adequately discharged this obligation .”¹⁵

In a report to the UN Human Rights Council, Nowak later specified that, in his expert opinion, “the de facto denial of access to pain relief, if it causes severe

11 . UN Committee on the Rights of the Child, General Comment Number 15, (2013), UN Doc . CRC/C/GC/15 .

12 . CEDAW General Recommendation No . 27 on older women and the protection of their hu-man rights, CEDAW/C/2010/47/GC .1, 19 October 2010 .

13 . International Covenant on Civil and Political Rights (ICCPR), adopted December 16, 1966, G .A . Res . 2200A (XXI), 21 U .N . GAOR Supp . (No . 16) at 52, U .N . Doc . A/6316 (1966), 999 U .N .T .S . 171, entered into force March 23, 1976, art . 7 (“No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment”); Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (Convention against Torture), adopted Decem-ber 10, 1984, G .A . res . 39/46, annex, 39 U .N . GAOR Supp . (No . 51) at 197, U .N . Doc . A/39/51 (1984), entered into force June 26, 1987, art . 16 .

14 . See, e .g ., the judgment of the European Court of Rights in Z v United Kingdom (2001) 34 EHRR 97 .

15 . A copy of the letter is available at: http://www .ihra .net/Assets/1384/1/SpecialRapporteursLet-tertoCND012009 .pdf (accessed January 16, 2013) .

pain and suffering, constitutes cruel, inhuman or degrading treatment or puni-shment .”¹⁶

Other human rights that are particularly engaged in relation to palliative care include rights to information, autonomy, independent living and access to community-based services, the rights of the child, and the rights of persons with disabilities, among others .

The right to autonomy and self-determination, an integral part of the right to privacy and family life, is highly relevant to palliative care as it grants people a right to make decisions concerning their own health, including at the end of life¹⁷ . The European Court of Human Rights, for example, has affirmed that people have the right to make decisions concerning their own health, including whether to continue with aggressive treatment options, even if such decisions may result in death . As the Court said:

“The freedom to accept or refuse specific medical treatment, or to select an alternative form of treatment, is vital to the princi-ples of self-determination and personal autonomy (…) for this freedom to be meaningful, patients must have the right to make choices that accord with their own views and values, regardless of how irrational, unwise or imprudent such choices may appear to others .”¹⁸

The Court has also found a positive obligation to protect individuals from interference with their legal capacity from others¹⁹; and to take reasonable steps to uncover previously stated wishes²⁰ .

The right to autonomy extends to everyone . For children with life-limiting illness, the general principles of the Convention on the Rights of the Child (CRC) are extremely relevant, particularly those enshrined in Articles 3 and 12 of the CRC . Article 3 refers to the child’s best interest as the determining factor in all actions dealing with him or her, taking precedence over the interests of the adults concerned (e .g ., parents, teachers, guardians) . Article 12 refers to the child’s right

16 . Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Manfred Nowak, A/HRC/10/44, January 14, 2009, http://

daccessdds .un .org/doc/UNDOC/GEN/G09/103/12/PDF/G0910312 .pdf?OpenElement (accessed August 4, 2013), para . 72 .

17 . See for example Evans v UK, Grand Chamber (application 6339/05) judgment of 10 April 2007; Pretty v UK .

18 . European Court of Human Rights, Case of Jehovah’s Witness of Moscow and Others v . Russia, Application no . 302/02, August 2010 .

19 . Storck v Germany, (Application no . 61603/00), judgment of 16 June 2005 . 20 . See for example Glass v UK, Application No 61827/00 . Decision of 9 March 2004 .

to express an opinion and to have that opinion taken into account in any matter affecting him or her . In some cases the child’s wishes or their best interests may conflict with the views of guardians . In such situations, the opinions of the child should be given due weight, based on their age and stage of development .

In relation to people with disabilities the Convention on the Rights of Persons with Disabilities (which applies to people with life-limiting illnesses when they lead to long-term physical, mental, intellectual or sensory impairments), the relevant UN committee has also clarified that the autonomy and capacity of persons with disabilities – including mental or intellectual disabilities as a result of, for example dementia – to make decisions must be respected and supported at all times . Accordingly, states have a positive obligation to provide persons with disabilities with access to support in the exercise of their decision-making capa-city, replacing substitute decision-making regimes by supported decision-making²¹ . The need for palliative care in humanitarian situations is a very neglected area . The issue has come to the foreground due to the major increase in displa-ced persons, migrants, and refugees as a result of recent conflict in the Middle East, instability in Africa, and severe weather due to climate change . Countries such as Jordan, Syria, Lebanon, Turkey, Greece, Italy, and many other European nations are seeing the greatest influx of displaced persons since World War II . Most of these persons are often very young or very old and disproportionately female . Existing chronic conditions are exacerbated and often access to the existing health facilities is very limited or unavailable . There is a strong unmet need to include palliative care into the global response to humanitarian crises as noted below .

Palliative Care for Vulnerable Populations Humanitarian Crises

The United Nations Office for Coordination of Humanitarian Affairs (UNOCHA) in their Global Humanitarian Overview of 2016 identified an estimated 87 million people in 37 countries required humanitarian aid.

At present little is known of the need for palliative care, patient palliative care needs, and provision in humanitarian situations and emergencies. Reports from Medicins sans Frontieres (MSF) identify the need for palliative care but a lack of guidelines, palliative care expertise, and inclusion of palliative care in the Sphere Handbook of minimum standards for humanitarian response. (2). MSF does prioritize the following patients for treatment: HIV, Tuberculosis, complex non-communicable diseases, traumatic injuries, very premature neonates, children with life-threatening illnesses, congenital, genetic and nutritional conditions and those in pain. And as with palliative care, the humanitarian response aims to reduce suffering and improve quality of life. Within the system of triage there are five levels of treatment and T4 (expectant priority) is for those unlikely to survive.

21 . UN Committee on the Rights of Persons with Disabilities, General Comment Number 1 (2014), UN Doc . CRPD/C/GC/1 .

…

Despite the World Health Assembly Resolution 67 of 2014 calling on countries to integrate palliative care into health systems; and recognition of palliative care as a human right 774 palliative care is still omitted from humanitarian relief strategies .

There is a recent movement to correct this situation with palliative care practitioners, academics, ethicists and humanitarian response practitioners collaborating to advocate for the inclusion of palliative care in humanitarian situations. PALCHASE Palliative Care in Humanitarian Aid Situations and Emergencies has been set up to bring together those working in this field;

to carry out research and to advocate for inclusion.

The World Health Organisation has set up a community of practice to develop materials and guidance.

A research survey has been distributed by Mc Master University and pilot projects are being planned by the Worldwide Hospice Palliative Care Alliance and the Glasgow End of Life study group.

Some palliative care services are being provided in a number of countries including Uganda, Germany, Greece, and Jordan. Refuges are being identified and cared for within hospice programmes in Austria and bereavement services are provided in Greece. A project by the University of Warwick and supported by EMMS International has appointed a nurse to provide palliative care in a post-natural disaster in Nepal and preliminary reports are very positive.

With the large numbers and high mobility of refugees and migrants palliative care must be integrated into existing services to reach those in need.

ADVOCACY²²

Palliative care has been defined as care that is person-centered and attentive to physical symptoms and psychological, social, and existential distress in patients with severe or life-threatening illness²³ . The goal of palliative care is to optimize the quality of life of patients and to address the needs of their families or close friends²⁴ . Palliative care can be provided in parallel with curative treatment, but its main purpose is to ease or prevent suffering . The World Health Organization (WHO) has emphasized that palliative care is particularly important in developing countries, where many terminally ill patients first seek medical attention when their illness is so advanced that it is beyond cure, and has urged countries with limited resources to focus on developing home-based palliative care services²⁵ .

22 . This section on advocacy was adapted from an open access article by D Lohman & J Amon,

“Evaluating a human rights based advocacy approach to expanding access to pain medicines and palliative care,” originally published in Health and Human Rights Journal . 2015; 17(2) . http://www . hhrjournal .org/2015/12/evaluating-a-human-rights-based-advocacy-approach-to-expanding-access-to-pain-medicines-and-palliative-care-global-advocacy-and-case-studies-from-in-dia-kenya-and-ukraine/

23 . Ahmedzai S, Costa A, Blengini C, et al . A new international framework for palliative care . Eur J Cancer 2004; 40(15):2192–2200 .

24 . Harding R, Easterbrook P, Dinat N, Higginson I . Pain and symptom control in HIV disease:

Under-researched and poorly managed . Clin Infect Dis 2005;40(3):491–492 .

25 . Hewitt D, McDonald M, Portenoy RK et al . Pain syndromes and etiologies in ambulatory AIDS patients . Pain 1997;70(2–3):117–123 .

…

An important part of palliative care is addressing chronic and severe pain . Chronic pain is one of the most significant causes of suffering and disability worldwide, and is a common symptom of both communicable (for example, HIV and TB) and non-communicable (for example, cancer and diabetes) disea-ses, as well as accidents²⁶ . Pain has a profound impact on quality of life and can have physical, psychological, and social consequences . It can lead to reduced mobility and a consequent loss of strength, compromise the immune system, and interfere with a person’s ability to eat, concentrate, sleep, and interact with others²⁷ . 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 pain²⁸ . The physical and psychological effects of chronic pain can also negatively influence the course of disease and indirectly influence disease outcomes by reducing treatment adherence .

Most pain in palliative care patients can be well controlled . WHO’s “pain relief ladder” recommends the administration of different types of pain medications, depending on the severity of pain, and is the basis of modern pain management²⁹ . For mild pain, WHO calls for basic pain relievers, usually widely available without prescription . For mild to moderate pain, it recommends a combination of basic pain relievers and a weak opioid, such as codeine . For moderate to severe pain,

Dans le document PALLIATIVE CARE PALLIATIVE CHRONIC CONDITIONS CHRONIC DISEASES ADVANCED CHRONIC CARE INTEGRATED (Page 186-196)