By Ruth Walshe, LLM International Human Rights Law, r.walshe@student.rug.nl

There are currently 68.5 million forcibly displaced persons worldwide,[1] most of whom are dependent on humanitarian aid and assistance.[2] Chronic conditions are evident across the refugee population and become heightened in protracted crisis. However, the healthcare focus is on acute injuries and illnesses,[3] whilst palliative care is absent from relief strategies, and continues to be unavailable in camp settings.[4] WHO has called for an appropriate response to the refugee crisis through the provision of adequate care,[5] which accordingly must include palliative care,[6] but stories from the ground tell of children and adults dying in severe pain, without the care and support they need.[7]

Under the ICESCR, every person has the right to the highest attainable standard of health.[8] States parties are under an obligation to refrain from “denying or limiting equal access for all persons, including prisoners or detainees, minorities, asylum-seekers and illegal immigrants, to preventive, curative and palliative health services”, and to take measures towards “care for chronically and terminally ill persons, sparing them avoidable pain and enabling them to die with dignity.”[9] The Special Rapporteurs on the Right to Health and on Torture have emphasised the importance of palliative care, and States parties’ obligations to provide pain management and end-of-life care.[10] Thus, palliative care is a necessary component of human rights, in particular, the right to health.[11] However, a right in theory does not always translate to a right in practice – especially where economic, social, and cultural rights are concerned, for which progressive realisation allows States parties a margin of appreciation in much of their implementation. This is especially true for States with limited resources – such as the developing nations which host 85% of forcibly displaced persons.[12] This worldwide end-of-life care deficit,[13] within which palliative care has not entered the “practice and culture” of humanitarian responses,[14] means millions continue to suffer without a comprehensive legal and practical framework for end-of-life care.

Chronic pain has a significant impact on a person’s life – it can immobilise someone, interfere with their ability to eat and sleep, cause depression and anxiety, reduce the effectiveness of treatment, and cause social consequences such as an inability to work, care for family, and participate in social activities.[15] This impact is profound in a humanitarian crisis, where a lack of resources, limited availability of healthcare, and poor infrastructure compound the effects of chronic pain.[16] 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”.[17] This is vital in refugee camps, where a high rate of chronic pain,[18] an emphasis on acute conditions, and a lack of healthcare resources leaves many vulnerable people without the care they vitally need.[19]

There are a number of barriers that must be resolved with regards to the provision of palliative care in refugee camps. Namely, a lack of training and research, restrictive opioid policies, limited resources, and a lack of knowledge of pain management.[20] To solve these problems, first action must be taken to eliminate barriers to pain treatment medication. The WHO Model List of Essential Medicines includes morphine, making pain management a core obligation.[21] However, many signatories to the Single Convention on Narcotic Drugs (SCND) choose to place a substantial emphasis on the restrictive articles of the convention,[22] despite it stating that narcotic drugs are “indispensable for the relief of pain and suffering”,[23] and that diversion of medical morphine for illicit purposes is relatively rare.[24] To this end, the International Narcotics Control Board (INCB) does manage simplified procedures for emergency situations, wherein drug control authorities may be bypassed if an emergency occurs which results in a disruption of their functioning.[25] Such a process could be used to ensure the availability of morphine during humanitarian crises. However, it requires that the control authorities must no longer be capable of fulfilling their mandate, which, despite a conflict situation, often may not be the case,[26] especially where refugee camps exist outside of the crisis. Thus, States’ governments and the international community must take steps to reform regulations that unnecessarily impede access to pain medication. Furthermore, States and humanitarian organisations must integrate pain management and palliative care into the training of health workers. Palliative care is inexpensive and can reduce strain on other areas of healthcare, but it requires training to be delivered effectively.[27] A pilot initiative for refugees with cancer in the Za’atari Camp in Jordan showed that a short training course for clinicians allowed palliative care to be integrated into existing health services with relative ease, and greatly improved the quality of life of participants.[28] Such an approach must be considered necessary in healthcare interventions. Finally, the international community must take responsibility for the right to health of refugees – especially where developing nations bear the brunt of the crisis. Article 2 of the ICESCR provides for “international assistance and co-operation”, and such an approach is clearly necessary with regard to healthcare for refugees.[29] Palliative care must be placed at the centre of international aid and healthcare provision, be given prominence in global human rights dialogues, and signatory nations to the ICESCR and the SCND must be challenged on their compliance with core obligations relating to palliative care.

A shift in the global understanding of healthcare priorities in refugee camps is necessary to ensure the right to health, and to reduce needless pain and suffering. This includes the creation and implementation of palliative care policies, the availability of necessary medication, and the integration and provision of palliative care at all levels of healthcare.[30] The existing legal framework, combined with evolving health and humanitarian policy, can go some way to closing this healthcare deficit.

[1] UNHCR, ‘Figures at a Glance’ Available at: <https://www.unhcr.org/figures-at-a-glance.html> Accessed 12/04/2019.

[2] Bart De Bruijn, ‘The Living Conditions and Well-Being of Refugees’ (2009) United Nations Development Programme, Human Development Reports/Research Paper.

[3] Adam Coutts et al., ‘Responding to the Syrian health crisis: the need for data and research’ (2015) The Lancet, 3:3, pp. 8-9.

[4] Joan Marston et al., ‘Palliative Care in Complex Humanitarian Emergencies’ (2015) The Lancet, 386:10007, pp. 1940; Farah Madi et al., ‘Death, Dying, and End-of-Life Experiences Among Refugees: A Scoping Review’ (2019) Journal of Palliative Care, 34:2, pp. 139-144.

[5] Zsuzsanna Jakab, ‘Population movement is a challenge for refugees and migrants as well as for the receiving population’ (2015) Available at: <http://www.euro.who.int/en/health-topics/health-determinants/migration-and-health/news/news/2015/09/population-movement-is-a-challenge-for-refugees-and-migrants-as-well-as-for-the-receiving-population> Accessed 12/04/2019.

[6] World Health Assembly, ‘Strengthening of Palliative Care as a Component of Comprehensive Care throughout the Life Course’ (2014) 67th World Health Assembly, WHA 67.19; WHO, ‘Palliative Care’ Available at: <https://www.who.int/news-room/fact-sheets/detail/palliative-care> Accessed 16/04/2019.

[7] See: World Child Cancer, ‘Neglected suffering: The unmet need for palliative care in Cox’s Bazar’ (2018) Available at: <https://reliefweb.int/report/bangladesh/neglected-suffering-unmet-need-palliative-care-cox-s-bazar> Accessed 12/04/2019; Isabel Pinheiro and Dilshad Jaff, ‘The role of palliative care in addressing the health needs of Syrian refugees in Jordan’ (2018) Medicine, Conflict and Survival, 34:1, pp. 19-38; Human Rights Watch, ‘“Please, do not make us suffer any more…”: Access to Pain Treatment as a Human Right’ (2009) Available at: <https://www.hrw.org/sites/default/files/reports/health0309webwcover_1.pdf> Accessed 16/04/2019.

[8] International Covenant on Economic, Social and Cultural Rights, 16 December 1966, United Nations, Treaty Series, vol. 993, p. 3, art. 12.

[9] UN Committee on Economic, Social and Cultural Rights (CESCR), General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12 of the Covenant), 11 August 2000, UN Doc. E/C.12/2000/4, para. 34, 25.

[10] UN Human Rights Council, Statement by Paul Hunt, Special Rapporteur on the right of everyone to the highest attainable standard of physical and mental health (2009); Special Rapporteurs on the question of torture and the right of everyone to the highest attainable standard of physical and mental health, Letter to Ms. Selma Ashipala-Musavyi, Chairperson of the 52nd Session of the Commission on Narcotic Drugs (2008).

[11] Such a right has also been recognised in regional jurisdictions, for example: “palliative care is…an inalienable element of a citizen’s right to health care” – Council of Europe, Recommendation Rec

(2003)24 of the Committee of Ministers to member states on the organisation of palliative care, pp. 7, Available at: <https://www.coe.int/t/dg3/health/Source/Rec(2003)24_en.pdf> Accessed 12/04/2019.

[12] See UNHCR, supra note 1.

[13] Michael Wright et al., ‘Mapping Levels of Palliative Care Development: A Global View’ (2008) Journal of Pain and Symptom Management, 35:5, pp. 469-485; Stephen R. Connor and Maria C. Sepúlveda Bermedo, ‘Global Atlas of Palliative Care at the End of Life’ (2014) WHO, Available at: <https://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf> Accessed 12/04/2019; Barbara Reville and Anessa M. Foxwell, ‘The global state of palliative care – progress and challenges in cancer care’ (2014) Annals of Palliative Medicine, 3:3, pp. 129-138.

[14] Martin Schneider et al., ‘How do expatriate health workers cope with needs to provide palliative care in humanitarian emergency assistance? A qualitative study with in-depth interviews’ (2018) Palliative Medicine, 32:10, pp. 1567-1574, at 1568.

[15] Frank Brennan et al., ‘Pain Management: A Fundamental Human Right’ (2007) Anesthesia & Analgesia, 105:1, pp. 205-221; Oye Gureje et al., ‘Persistent Pain and Well-Being: A World Health Organization Study in Primary Care’ (1998) Journal of the American Medical Association, 280:2, pp. 147-151; Barry Rosenfeld et al., ‘Pain in Ambulatory AIDS Patients. II: Impact of Pain on Psychological Functioning and Quality of Life’ (1996) Pain, 68:2-3, pp. 323–328; Randall L. Daut et al., ‘Development of the Wisconsin Brief Pain Questionnaire to Assess Pain in Cancer and Other Diseases’ (1983) Pain, 17:2, pp. 197–210.

[16] See Madi et al., supra note 4; Pinheiro and Jaff, supra note 7.

[17] WHO, WHO Definition of Palliative Care, Available at: <https://www.who.int/cancer/palliative/definition/en/> Accessed 12/04/2019.

[18] See Coutts et al., supra note 3.

[19] See Madi et al., supra note 4.

[20] Mohammad Al-Qadire et al., ‘Palliative Care in Jordan: Accomplishments and Challenges’, in Michael Silbermann (ed), Palliative Care to the Cancer Patient (Nova Science Publishers, Inc., 2014); Connor and Sepúlveda Bermedo, supra note 13; Marjolein Gysels et al., ‘End of Life Care in sub-Saharan Africa: A Systematic Review of the Qualitative Literature’ (2011) BMC Palliative Care, 10:6; Elysée Nouvet et al., ‘Palliative care in humanitarian crises: a review of the literature’ (2018) Journal of International Humanitarian Action, 3:5.

[21] WHO Model List of Essential Medicines, 20th List (March 2017, amended August 2017), Available at: <https://apps.who.int/iris/bitstream/handle/10665/273826/EML-20-eng.pdf?ua=1> Accessed 12/04/2019.

[22] See Schneider et al., supra note 14; Snezana Bosnjak et al., ‘Improving the availability and accessibility of opioids for the treatment of pain: The International Pain Policy Fellowship’ (2011) Support Care Cancer, 19:8, pp. 1239-1247; Stefano Berterame et al., ‘Use of and barriers to access to opioid analgesics: a worldwide, regional, and national study’ (2016) The Lancet, 387:10028, pp. 1644–1656.

[23] Single Convention on Narcotic Drugs, 30 March 1961, United Nations, Treaty Series, vol. 520, p. 151, preamble.

[24] INCB, ‘Report of the International Narcotic Control Board for 2008’ (2009) UN Doc. E/INCB/2008/1.

[25] WHO, ‘Model Guidelines for the International Provision of Controlled Medicines for Emergency Care’ (1996) WHO/PSA/96.17.

[26] Brianne McGonigle Leyh and Marie Elske Gispen, ‘Access to Medicines in Times of Conflict: Overlapping Compliance and Accountability Frameworks for Syria’ (2018) Health and Human Rights, 20:1, pp. 237-250, at 243.

[27] Michael Silbermann et al., ‘Promoting New Approaches for Cancer Care in the Middle East’ (2013) Annals of Oncology, 24:7, pp. 5–10; Corinne Hodgson, ‘Cost-effectiveness of Palliative Care: A Review of the Literature’ (2013) Canadian Hospice Palliative Care Association.

[28] See Pinheiro and Jaff, supra note 7.

[29] See ICESCR, supra note 8, art. 2.

[30] Such recommendations are backed by the international palliative care community, see: Lydia Mpanga-Sebuyira et al., ‘The Cape Town Palliative Care Declaration: home-grown solutions for sub-Saharan Africa’ (2003) Journal of Palliative Medicine, 6:3, pp. 341-343; National Hospice and Palliative Care Associations, ‘The Korea declaration. Report of the second global summit of National Hospice and Palliative Care Associations’ (2005); European Association for Palliative Care, ‘The Budapest Commitments’ (2007).