palliativecare

How is palliative care a human rights issue?

What is palliative care?

“Palliative care is an approach that seeks to improve the quality of life of patients diagnosed with life-threatening illnesses through prevention and relief of suffering.”1 It also addresses the psychosocial, legal, and spiritual aspects associated with life-threatening illnesses.2

Palliative care is fundamental to health and human dignity and is a basic human right.3 The United Nations Committee on Economic, Social and Cultural Rights asserted that “States are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons . . . to preventive, curative and palliative health services.“4 The United Nations Special Rapporteur on torture and other cruel, inhuman, or degrading treatment or punishment stated that he “is of the opinion that the de facto denial of access to pain relief, if it causes severe pain and suffering, constitutes cruel, inhuman or degrading treatment or punishment.”5

Palliative care should be provided from the time of diagnosis and in tandem with any curative treatment. As the patient’s disease progresses into the terminal phase, palliative care should adapt to the patient’s changing needs. Palliative care must include psychological and spiritual services and other support in preparation for death. Palliative care programs should also tend to the needs of the family throughout the progression of the disease and into bereavement.6 Some programs include legal services to address power of attorney or health care proxy decisions and assistance in executing a will.

Palliative care programs are most effective when integrated into existing health care systems and at all levels of care. Programs can be designed to be provided in hospital or clinic settings, as well as the patient’s home or residential facility (such as a nursing home). Ideally, palliative programs overlap in providing care at all levels. Palliative care programs involve both the public and private sector, and can be adapted to the specific cultural, economic, and social setting.7

World Health Organization Definition of Palliative Care

Palliative care is an approach that improves the quality of life of patients and their families facing the problem 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, psychosocial, and spiritual. Palliative care:

        • provides relief from pain and other distressing symptoms;
        • affirms life and regards dying as a normal process;
        • intends neither to hasten nor postpone death;
        • integrates the psychological and spiritual aspects of patient care;
        • offers a support system to help patients live as actively as possible until death;
        • offers a support system to help the family cope during the patients illness and in 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; and
        • 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.

How is palliative care a human rights issue?

The need for palliative care worldwide is great.Of the 58 million people dying annually, at least 60% will have a prolonged advanced illness and would benefit from palliative care. About 80% of the dying would benefit from palliative care to alleviate pain and suffering in their final days. Unfortunately for many, palliative care programs are either unavailable or are inaccessible. The United Nations Special Rapporteur on the highest attainable standard of mental and physical health (Special Rapporteur on the Right to Health) noted that “[p]atients suffering from severe to moderate pain, where palliative care essentially is unavailable, said they would prefer to die than continue living with untreated, severe pain.”8

Palliative care should be available for anyone suffering from moderate or severe pain, but below we highlight cancer and AIDs patients because of the overwhelming need for palliative care among these populations, as well as older persons and children, for whom palliative care is often an afterthought.

Cancer patients

Cancer patients are one the largest populations in need of palliative care. The World Health Organization (WHO) projects that global cancer deaths will increase from 7.9 million in 2007 to 11.5 million in 2030.9 In addition, new cases of cancer during the same period are estimated to grow to 15.5 million in 2030, up from 11.3 million in 2007.10 Over half of the new cancer cases each year occur in less developed countries.11 And while the WHO has demonstrated that up to 90% of cancer patients can receive adequate therapy for their pain with opioid analgesics, in 2005, 80% of cancer patients did not have access to pain relieving drugs.

Pain associated with cancer can be unbearable. Pain can be caused by the cancer itself, a cause related to the cancer, a consequence caused by or related to the cancer treatment, or by a concurrent disorder.12 To guide policy makers and health care practitioners, the WHO developed the “pain-relief ladder,” a simple three-phase guide on pain relief for people suffering from cancer.13 WHO also recommends treatment for the psychological suffering of cancer patients including for anxiety and depression. WHO writes, “The aim of treatment is to relieve the pain to the patient’s satisfaction, so that he or she can function effectively and eventually die free of pain.”14

People living with HIV and AIDS

There are approximately 34.2 million people living with HIV and an estimated 1.7 million AIDs-related deaths each year.15 Up to 80% of patients in the advanced stages of AIDS suffer great pain, but very few have access to pain relieving drugs or palliative care services. The Special Rapporteur on the Right to Health estimates that around 85% of people living with HIV may have untreated pain.16 Again, less developed countries experience the highest rates of HIV/AIDs infection, but have limited access to opioid medications for pain relief.

Palliative care for people living with AIDS has its own challenges. The progression of AIDS is variable and unpredictable, and people experience a wide range of complications and rates of survival.17 People with AIDS face possible opportunistic infections as well as experience different side effects from treatment for the infections and AIDS itself.18 Providing palliative care for people with AIDS must adjust to the differing needs of patients. People with HIV/AIDs also experience discrimination and stigma, influencing the individual’s access to health care, living experiences, and personal support networks. For example, “Where patients with HIV are also dependent on drugs, they may be denied access to both OST and palliative care.”19 Designers of palliative care programs should be cognizant of the additional social pressures and lack of services that AIDS patients face.

Older persons

The United Nations Committee on Economic, Social and Cultural Rights states that, with regard to the realization of the right to health of older persons, “attention and care for chronically and terminally ill persons [is important], sparing them avoidable pain and enabling them to die with dignity.”20 Older persons experience increased rates of chronic and terminal illnesses, and therefore are a significant portion of the population that requires palliative care. There are about 605 million people aged 60 years and over, and WHO expects that number to increase to 2 billion by 2050, with low- and middle-income countries experiencing the most rapid changes.21 As the older population grows in size, palliative care programs will have to be developed or augmented to address their specific needs.

Palliative care programs must not discriminate against people based on their age. The Special Rapporteur on the Right to Health notes that while barriers to palliative care are not to unique to older persons as a group, they are “disproportionately affected due to the increased incidence of chronic and terminal illness amongst them.”22 The Special Rapporteur also queried whether older persons are less likely to receive palliative care, noting that more research is required to determine whether the distribution of palliative care services are “inequitable or whether the needs of older persons are being met through other services.”23

Children

Children24 with terminal illnesses and debilitating diseases suffer from pain but are often not provided with palliative care. Children’s pain is often underestimated or even neglected because of cultural beliefs or ignorance. The International Children’s Palliative Care Network estimated that 20 million children worldwide can benefit from palliative care.25 Children suffer from terminal illnesses like cancer and AIDS, as well as debilitating disabilities. For example, in 2008, the American Cancer Society estimated that 175,300 new cases of cancer occurred, and 96,400 children died from the disease.26 In 2011, an estimated 3.4 million children were living with HIV/AIDS and 330,000 children were newly infected.27

Palliative care seeks to improve the quality of life for a patient. “For children this also includes support of optimal childhood development, formal education, and developmental stimulation to enable the child, at every age, to live the best life possible.”28 At all times, the best interest of the child must be the primary consideration.

Access to essential medicines

An important component of palliative care is access to essential drugs to alleviate pain. For many with terminal illnesses, pain and suffering caused by the illness is debilitating but can be easily treated with opioid analgesics. The International Narcotics Control Board reported that, in 2009, more than 90% of the global consumption of opioid analgesics occurred in Australia, Canada, New Zealand, the United States of America, and several European countries.29 Consequently, over 80% of the world has insufficient or no access to opioid medications, and therefore have no relief from their pain and suffering.30

Manfred Nowak, UN Special Rapporteur on torture and other cruel, inhuman, or degrading treatment or punishment, and Anand Grover, UN Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, stated:

Governments also have an obligation to take measures to protect people under their jurisdiction from inhuman and degrading treatment. Failure of governments to take reasonable measures 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.31

Essential medicines

WHO has developed two lists of medicines that it considers essential for satisfying the priority health care needs of the population. They are called the Model List of Essential Medicines and the Model List of Essential Medicines for Children,32 and they serve as a guide for national and institutional essential medicines lists.33 The Committee on Economic, Social and Cultural Rights established in General Comment 14 that states are obligated to provide “essential medicines as defined by the WHO Action Programme on Essential Drugs” as part of the minimum core obligations to realize the right to health.34

In 2007, the International Association for Hospice and Palliative Care (IAHPC), in collaboration with 26 palliative care organizations, developed a list of essential medicines for palliative care.35 Of the 34 medications listed, just 14 were included in the WHO Model List (most recently updated in 2011), and morphine is the only strong opioid analgesic on the WHO list. Oral morphine is particularly essential for palliative care because it provides an inexpensive option for pain management. However, especially in low- and middle-low income countries, opioid formulations that are more expensive or more difficult to use, such as injectable morphine, are only available. The high cost of these opioids hinders access to treatment. Meanwhile, the low profit margin from oral morphine is exacerbated by additional costs of unnecessarily burdensome regulatory requirements, which may further deter the pharmaceutical industry from supplying it.36

International drug control conventions

Many essential medicines identified by the WHO are controlled medicines under international drug control conventions, including the Single Convention on Narcotic Drugs (1961) amended by the 1972 Protocol; the Convention on Psychotropic Substances (1971); and the United Nations Convention against Illicit Traffic in Narcotic Drugs and Psychotropic Substances (1988). These medicines are controlled because of their addictive properties and likelihood for misuse.

The International Narcotics Control Board (INCB) oversees the distribution of controlled substances, as designated by the international drug control conventions. The INCB states:

The international drug control treaties recognize that narcotic drugs and psychotropic substances are indispensable for medical and scientific purposes. However, despite numerous efforts by the Board and the World Health Organization (WHO), as well as non-governmental organizations, their availability in much of the world remains very limited, depriving many patients of essential medicines.37

It is the position of the INCB that the international drug control treaties do not prohibit the production and access to controlled substances for medicinal purposes.

Barriers to accessing essential medicines

So what are the barriers to accessing essential medicines in the majority of the world? The INCB surveyed countries, and determined the main factors affecting the availability of opioids for medical needs: concerns about addiction, reluctance to prescribe or stock controlled substances, insufficient training for professionals, law restricting activities, administrative burden, cost, difficulties in distribution, insufficient supply, and absence of policy.38

Attitude and knowledge-related impediments

Health care professionals are worried about patient addiction to or dependence on opioids and therefore under-prescribe opioids for palliative care purposes. However, studies have demonstrated that prescribing opioids for pain relief does not lead to dependence.39 “Many myths exist surrounding the use of controlled drugs: that they lead to addiction, do not treat pain adequately, or that chronic or terminal pain is untreatable.”40In part, under-prescribing is due to insufficient training for health care professionals. Without proper training, health care workers maybe hesitant to prescribe or stock opioids for fear of legal implications, misunderstanding of its efficacy, or fear of addiction.41 The top three factors listed in the survey responses all correspond to knowledge and attitudinal barriers affecting the availability of opioids for medical purposes.

Laws and regulations

National and local laws and regulations can be so burdensome that they impede the distribution of controlled substances or prohibit their use altogether.42 For example, “Regulations [may] also limit the substances a doctor may prescribe, or the amount that can be prescribed. Certain States require health-care workers to obtain special licences to prescribe morphine, in addition to their professional licences.”43 Some countries regulate licensing of controlled medicines to health care institutions, allowing only “Level 1” hospitals to prescribe opioids.44 In order to determine barriers to accessing essential medicines, States should examine all levels of laws and regulations for the “production, procurement, storage, distribution, prescription, dispensing and administration of opioid analgesics (and other controlled medicines).”45

Cost

Palliative care and access to opioids are frequently promoted as a low-cost solution to pain and suffering. However, access to medicines, even if manufactured at low cost, may not be affordable for all individuals suffering from chronic illnesses. The Special Rapporteur to health explains:

Despite this, even medicines that can be manufactured at low cost are not necessarily affordable for consumers, because drug producers incur significant regulatory costs that are passed on to consumers within the market price of the drug. For instance, Cipla, a generic manufacturer in India produces 10 mg morphine tablets sold wholesale for US$ 0.017 each, yet the median cost of a month’s supply of morphine in low- and middle-income countries is $112, as compared to $53 for industrialized countries.46

Notes

1 UN General Assembly, Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/65/255 (Aug. 6, 2010).

2 Open Society Foundations, Palliative Care as a Human Right (2011). www.soros.org/sites/default/files/palliative-care-human-right-20110524.pdf.

3 Ibid.

4 UN Committee on Economic, Social and Cultural Rights, General Comment No. 14, E/C.12/2000/4, para. 34 (Aug. 11, 2000).

5 UN Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, A/HRC/10/44), para. 72 (Jan. 14, 2009).

6 World Health Organization, Cancer Control Knowledge into Action: WHO Guide for Effective Programs (2007). http://whqlibdoc.who.int/publications/2007/9241547345_eng.pdf.

7 Ibid.

8 UN General Assembly, Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/65/255 (Aug. 6, 2010).

9 World Health Organization, Are the number of cancer cases increasing or decreasing in the world (Apr. 1, 2008). www.who.int/features/qa/15/en/index.html.

10 Ibid.

11 World Health Organization, National Cancer Control Programmes: Policies and Managerial Guidelines (2002). http://whqlibdoc.who.int/hq/2002/9241545577.pdf.

12 World Health Organization, Cancer Pain Relief: With a guide to opioid availability (1996): 5. http://whqlibdoc.who.int/publications/9241544821.pdf.

13 World Health Organization, “WHO’s Pain Ladder.” www.who.int/cancer/palliative/painladder/en/. For a more detailed analysis see, WHO, Cancer Pain Relief: With a guide to opioid availability (1996). http://whqlibdoc.who.int/publications/9241544821.pdf.

14 World Health Organization, Cancer Pain Relief: With a guide to opioid availability (1996): 3. http://whqlibdoc.who.int/publications/9241544821.pdf.

15 UNAIDS, Global AIDS epidemic facts and figures, Fact Sheet (July 18, 2012). www.unaids.org/en/media/unaids/contentassets/documents/epidemiology/2012/201207_FactSheet_Global_en.pdf.

16 UN General Assembly, Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/65/255 (Aug. 6, 2010).

17 UNAIDS, AIDS: Palliative Care (Oct. 2000): 3. http://data.unaids.org/Publications/IRC-pub05/JC453-PalliCare-TU_en.pdf.

18 Ibid.

19 UN General Assembly, Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/65/255 (Aug. 6, 2010).

20 UN Committee on Economic, Social and Cultural Rights, General Comment No. 14, E/C.12/2000/4, para. 25 (Aug. 11, 2000).

21 World Health Organization, “Ageing and Life Course: Interesting Facts About Ageing” (Mar. 28, 2010). www.who.int/ageing/about/facts/en/index.html.

22 UN Human Rights Council, Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, Thematic Study, A/HRC/18/37 (July 4, 2011). http://www2.ohchr.org/english/bodies/hrcouncil/docs/18session/A-HRC-18-37_en.pdf.

23 Ibid.

24 For technical guidance on pharmacological treatment of children and policy reform recommendations, please see World Health Organization, WHO guidelines on the pharmacological treatment of persisting pain in children with medical illnesses (2012). http://whqlibdoc.who.int/publications/2012/9789241548120_Guidelines.pdf; World Health Organization, Persisting Pain in Children: Highlights for policy makers (2012). http://whqlibdoc.who.int/publications/2012/9789241548120_%20Policy%20Brochure.pdf; World Health Organization, Persisting Pain in Children: Highlights for physicians and nurses (2012). http://whqlibdoc.who.int/publications/2012/9789241548120_Physicians&Nurses.pdf; World Health Organization, Persisting Pain in Children: Highlights for pharmacists (2012). http://whqlibdoc.who.int/publications/2012/9789241548120_Pharmacists_Brochure.pdf.

25 International Children’s Palliative Care Network, “The need for Children’s Palliative Care.” www.icpcn.org.uk/page.asp?section=0001000100080002.

26 American Cancer Society, Global Cancer Facts and Figures (2008). www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-027766.pdf.

27 UNAIDS, Global AIDS epidemic facts and figures, Fact Sheet (July 18, 2012). www.unaids.org/en/media/unaids/contentassets/documents/epidemiology/2012/201207_FactSheet_Global_en.pdf.

28 Hospice Palliative Care Association of South Africa, “Chapter 8: Legal Rights of Children in Palliative Care,” in Legal Aspects of Palliative Care Manual (2012). www.hpca.co.za/Legal_Resources.html.

29 International Narcotics Control Board, Report of the International Narcotics Control Board on the Availability of Internationally Controlled Drugs: Ensuring Adequate Access for Medical and Scientific Purposes (2010). http://www.unodc.org/documents/southerncone/noticias/2011/03-marco/Jife/Report_of_the_Board_on_the_availability_of_controlled_substances.pdf.

30 Ibid.

31 Joint letter by UN special rapporteur on the prevention of torture and cruel, inhuman or degrading treatment or punishment, Manfred Nowak, and the UN special rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, Anand Grover, to the Commission on Narcotic Drugs (December 2008). http://www.hrw.org/news/2008/12/10/un-human-rights-experts-call-upon-cnd-support-harm-reduction.

32 World Health Organization, Medicines: WHO Model Lists of Essential Medicines (March 2011). www.who.int/medicines/publications/essentialmedicines/en/.

33 World Health Organization, “Medicines: Essential Medicines.” www.who.int/medicines/services/essmedicines_def/en/index.html.

34 UN Committee on Economic, Social and Cultural Rights, General Comment No. 14 (2000), E/C.12/2000/4 (Aug. 11, 2000).

35 International Association for Hospice and Palliative Care, IAHPC List of Essential Medicines for Palliative Care (2007). http://hospicecare.com/resources/palliative-care-essentials/iahpc-essential-medicines-for-palliative-care/.

36 Pallum India, “The Morphine Manifesto” (2012). http://palliumindia.org/manifesto/ .

37 International Narcotics Control Board, Report of the International Narcotics Control Board on the Availability of Internationally Controlled Drugs: Ensuring Adequate Access for Medical and Scientific Purposes (2010). http://www.unodc.org/documents/southerncone/noticias/2011/03-marco/Jife/Report_of_the_Board_on_the_availability_of_controlled_substances.pdf.

38 Ibid.

39 UN General Assembly, Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/65/255 (Aug. 6, 2010).

40 Ibid.

41 International Narcotics Control Board, Report of the International Narcotics Control Board on the Availability of Internationally Controlled Drugs: Ensuring Adequate Access for Medical and Scientific Purposes (2010). http://www.unodc.org/documents/southerncone/noticias/2011/03-marco/Jife/Report_of_the_Board_on_the_availability_of_controlled_substances.pdf; UN General Assembly, Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/65/255 (Aug. 6, 2010).

42 International Narcotics Control Board, Report of the International Narcotics Control Board on the Availability of Internationally Controlled Drugs: Ensuring Adequate Access for Medical and Scientific Purposes (2010). http://www.unodc.org/documents/southerncone/noticias/2011/03-marco/Jife/Report_of_the_Board_on_the_availability_of_controlled_substances.pdf.

43 UN General Assembly, Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/65/255 (Aug. 6, 2010).

44 Ibid.

45 World Health Organization, Persisting Pain in Children: Highlights for policy makers extracted from the guidelines on the pharmacological treatment of persisting pain in children with medical illnesses (2012). http://whqlibdoc.who.int/publications/2012/9789241548120_%20Policy%20Brochure.pdf.

46 UN General Assembly, Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/65/255 (Aug. 6, 2010).