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Law and Ethics of End-of-Life Care in Humanitarian Crises 

Law and Ethics of End-of-Life Care in Humanitarian Crises
Chapter:
Law and Ethics of End-of-Life Care in Humanitarian Crises
Author(s):

Natasha Yacoub

, Lisa Schwartz

, and Kevin Bezanson

DOI:
10.1093/med/9780190066529.003.0015
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date: 27 September 2020

Introduction

Patients are often unable to access the end-of-life assistance they need during humanitarian crises. Where humanitarian access may be limited and resources finite, complex ethical issues arise for humanitarian actors in prioritizing palliative care. Saving lives may take precedence over medical care for individuals who cannot be cured or support for their families. However, this also raises serious ethical and legal questions for humanitarian actors. This chapter explores the right of patients to palliative care during emergencies, whether owing to conflict or natural disaster. It argues that there is a legal obligation, primarily of governments, to provide access to palliative care to relieve suffering and respect human dignity in these scenarios, and that the ethics of humanitarian action demands it.

In the context of end-of-life care in humanitarian crises, ethical and legal concerns draw from an important distinction between what palliative care is and what it is not. Palliative care is not abandoning patients to “no care or treatment,” nor is it intentionally ending a patient’s life (euthanasia). In reality, palliative care is the opposite of each of these. Rather, it is actively caring for people for whom curative treatment is no longer viable, and it concerns non-abandonment, comfort measures, and attention to psychosocial issues. Moreover, it is intended to be patient centered and family engaged.

The Law

In designing humanitarian interventions, there is a sound legal basis for integrating palliative care into a response targeting multiple rights.

International Human Rights Law

Definition

International human rights law applies in all humanitarian crises, with limited exceptions in a state of emergency. It is often reflected in regional and national laws. This area of law enables advocacy for the inclusion of palliative care in humanitarian settings; sets out the obligations of state and non-state actors; and provides the framework to document and seek legal recourse for violations of palliative care rights. The foundation of international human rights law, the International Bill of Rights, is the Universal Declaration of Human Rights 1948 (UDHR) as well as two binding treaties, the International Covenant on Civil and Political Rights 1966 (ICCPR)1 and International Covenant on Economic, Social and Cultural Rights 1966 (ICESCR),2 signed by almost all states.

Right to Health

Article 12.1 of the ICESCR2 requires that governments “recognise the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.” This right can be interpreted to include a right of patients to receive palliative care as well as an obligation of governments to provide this care.3 Acknowledging the difficulties of resource-poor nations, the law requires that the right is progressively realized. However, certain aspects are compulsory, including access to minimum essential food, basic shelter, housing, and sanitation; an adequate supply of safe and potable water; and the provision of essential drugs.4 The essential drugs, defined under the World Health Organization (WHO) Action Program on Essential Drugs, includes medications for common symptoms used in palliative care provision.5 (Please see Chapter 13 for essential medications and dosing.)

Special Needs

The right to health under international law requires that access to healthcare, which may include palliative care, should be provided during humanitarian crises for groups of people in a non-discriminatory manner and with particular attention to individuals with special needs, including:

  • Ethnic minorities (Article 5(e)(iv) of the International Convention on the Elimination of All Forms of Racial Discrimination, 1965)

  • Women (Articles 11(1)(f), 12, and 14(2)(b) Convention on the Elimination of All Forms of Discrimination against Women, 1979)

  • Children (Article 24 of the Convention on the Rights of the Child, 1989)

  • Persons with disabilities (Article 25 of the Convention on the Rights of Persons with Disabilities, 2006)

Prohibition of Torture and Cruel, Inhuman, and Degrading Treatment

Article 7.1 of the ICCPR1 states that “no one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment . . . .” The denial by a government of palliative care may comprise cruel and inhuman treatment or even torture if the elements of the law are met. An example of a breach of this law could be the prohibition by a state of the use of opioids for medical purposes.3

Cultural Relativism

A common challenge in the provision of palliative care in humanitarian settings is the cultural and religious beliefs about death and dying that may inhibit services such as pain relief or psychological interventions. While humanitarians have a duty to understand and respect local customs and beliefs, culture cannot override fundamental human rights.6 Respect for human dignity is a common principle of international human rights law that should include the right to die in dignity, recognizing the cultural differences in how dignity is defined.

Remedies

Violations of international human rights law are usually overseen by independent human rights monitors, including non-governmental organizations (NGOs). The United Nations has rapporteurs on particular rights who prepare specialized reports. The legal breaches will be raised with the government concerned, either confidentially or through public reporting. In addition, international human rights treaties have periodic reporting requirements, whereby states report on compliance with the law to a treaty body. Civil society actors may raise concerns about a lack of palliative care to the treaty body through a confidential or public communication with this treaty body. Moreover, there is a procedure to make complaints under some international human rights treaties to specialized bodies, but the recommendations are non-compellable. If international human rights norms are incorporated into regional and domestic laws, then binding decisions may be available through regional or domestic courts.

International Humanitarian Law

Definition

International humanitarian law (IHL), or the law of war, applies during international and non-international armed conflict. It binds both states and parties to a conflict. The principle IHL texts are the four Geneva Conventions of August 12, 1949 and their two Additional Protocols of 1977 relating to the protection of victims in armed conflict.7 These instruments serve to limit the effects of war by protecting persons who are no longer participating in hostilities, including wounded or sick military and naval personnel and prisoners of war; protecting civilians, including health workers; and restricting the means and methods of warfare. The instruments are principally overseen by the International Committee of the Red Cross (ICRC).7

Access to Healthcare

IHL complements international human rights law. It provides specific rules protecting access to healthcare during conflict, which can be interpreted to include end-of-life assistance. For example, Article 12 of the Geneva Convention for the Amelioration of the Condition of the Wounded and Sick in Armed Forces in the Field 1949 requires that the parties to a conflict protect wounded and sick persons from ill treatment, which includes a prohibition on torture. It requires that they they shall not wilfully be left without medical assistance and care. Depriving the sick and wounded of palliative care could be interpreted to violate this provision. The most significant IHL treaties relating to healthcare provision in emergencies are summarized in: https://www.icrc.org/en/document/respecting-and-protecting-health-care-armed-conflicts-and-situations-not-covered.

Remedies for Violations

The ICRC monitors humanitarian crises situations and communicates confidentially with governments and armed actors to remedy breaches of IHL. Where stronger measures are required, there may be diplomatic pressure on the state or armed actors by intergovernmental organizations or interested states. For very serious breaches of the law, criminal justice through specialized tribunals or the International Criminal Court may be available.

Other Laws Applicable in Humanitarian Emergencies

Relevant areas of international law, many reflected in regional and national laws, include refugee law, privileges and immunities law, customs law, and transport law. Duty-of-care obligations may arise under tort law in many national jurisdictions.8 For more information, see: https://ifrc-media.org/interactive/wp-content/uploads/2015/12/FP-brochure-2015.pdf.

Ethics

Key Ethical Approaches

The key ethical issues guiding palliative care in humanitarian responses may be viewed from a principlist approach, namely based on bioethical principles of autonomy, beneficence, nonmaleficence, and justice, or virtue ethics approach, applying the principles of virtuous health professionals.3 The key principles have been described by the WHO as6:

  • Respect for persons—dignity and human rights are respected, patients have access to information, confidentiality is respected.

  • Nonmaleficence—do no harm.

  • Beneficence—work for the good of patients and protect them from harm; exercise good judgement in situations where the good of the patient or family conflicts with public health concerns (e.g., restrictions on burial rituals during infectious disease outbreak).

  • Justice—equal medical treatment is provided for patients with similar conditions or symptoms, not restricting patient autonomy except to protect public health.8

  • Solidarity—communities stand together to face common threats and overcome pathogenic inequalities.

  • Non-abandonment—no person in need of medical care should be abandoned, ignored, or neglected, and expectant patients much be provided with palliative care and symptom control as essential parts of all humanitarian crises.

  • Double effect—an action with a possible good effect and possible bad effects is morally permitted if the action if not immoral, is undertaken with the intention of achieving the possible good effect, does not bring about the possible good effect by means of a possible bad effect, and is undertaken for a proportionately grave reason.

  • Ethics and culture—humanitarian actors must seek to understand local ethical norms and adapt them to a patient’s religious, cultural, and personal values, noting that culture does not override human rights.

If a conflict between ethical principles arises, the WHO proposes that the ways to resolve these include seeking input from those affected, ensuring two-way communication with all affected people, transparency in explaining decisions, providing a mechanism to challenge decisions, ensuring consistency in allocation, and ensuring that palliative care is accessible for patients who cannot be saved with existing resources.6

Humanitarian Principles

Authors, such as Hugo Slim,9 propose that the first four of the Seven Humanitarian Principles10 help to define humanitarianism.9 Taken together, these four principles support an ethical imperative to provide palliative care in crisis situations:

  1. 1. Humanity—preventing and alleviating suffering wherever it is found, protecting life and health, ensuring respect for the human being

  2. 2. Impartiality—non-discrimination in delivering assistance, endeavoring only to relieve suffering and giving priority to the most urgent cases

  3. 3. Neutrality—taking no sides in hostilities

  4. 4. Independence—maintaining autonomy so as to be able to act in accordance with the other principles

Thus, the Humanitarian Principles can be understood to require the humane treatment of people who are unable to be cured or whose lives cannot be saved. The principles of humanity and impartiality in particular mean that “all patients receive care and should never be abandoned for any reason, even if they are dying.”6

Humanitarian actors may also be bound by codes of conduct, which may be enforceable by law.

Obstacles and Moral Experiences

Obstacles

In humanitarian healthcare settings, numerous obstacles to provision of palliative care have been identified. Nevertheless, as Smith and Aloudat11 have pointed out, there is no need for a false dichotomy between palliative interventions and what humanitarian healthcare has to offer. On the contrary, palliative care can easily harmonize with a stated principle of humanitarian action: to help ease suffering.11,12,13,14,15,16

The following obstacles to palliative care in humanitarian settings have been identified17:

  1. 1. Ethos: the rush to rescue and the emphasis on saving as many lives as possible sometimes leads to feelings of complicity when only end-of-life care can be provided.

  2. 2. Priorities: there is an explicit need for triage in many circumstances and ensuing dilemmas about how limited time and resources should best be allocated.

  3. 3. Funder expectations: saving lives is believed to be a higher priority and the essence of public engagement for funders, rather than providing palliation for those whose lives cannot be saved.

  4. 4. Lack of expertise, training, and guidance for field practitioners to situate palliative care in crisis settings: sometimes this leads to either abandonment or futile invasive interventions for patients who will only experience them as burdensome and not beneficial.

  5. 5. Poor access to adequate pain medications: this can be due to scarcity, or more often to these medications not being authorized or legally obtainable inside an affected country.

  6. 6. Apprehension about cultural specificity: understanding how to deliver culturally appropriate care is complicated and will take time and engagement to accomplish.

  7. 7. Lack of shared language: about palliation, end-of-life care, and other concepts can lead to misunderstandings and breakdowns in trust among providers and within organizations.

  8. 8. Worries about security risks: these are associated with a) being misperceived as providing no care or actively ending lives, and b) concerns about theft of scarce, potentially valuable, pain medications such as opiates.

  9. 9. Host community relationships: this is related to cultural sensitivity, but also that inequities may arise in the health system does not, or is unable to provide palliative care services, while an NGO offers it only to the population it is designated to serve, such as refugees. It is also important to recognize that in crisis settings, local healthcare providers and volunteers may be experiencing their own trauma and bereavement.

  10. 10. Continuity of care: continuity is a special concern in fragile states or when a field program is intended to be short term. Patients started on palliative care may be unable to access it when the NGO is out of range.

This list may not be exhaustive, but it represent the concerns shared by field practitioners in an empirical study.17

Moral Experiences

Confronting the obstacles in the course of disaster relief or in conflict settings can lead to moral distress, where a sense of wanting to do what is best for the patient or community is thwarted by the realities of the context. An examination of the moral experiences of humanitarian healthcare providers providing care for patients with life-limiting illness indicates that values of compassion and justice are at the heart of their efforts.17 While healthcare providers recognize their duty of care to all patients, they wrestle with being able to manage priorities fairly within emergency settings made worse by scarce resources, leading to the perception that there is no time or capacity for patients with life-limiting illness. Healthcare providers in humanitarian settings identify inequities where patients are excluded from accessing care when there is little availability of healthcare providers trained in palliative approaches to healthcare and/or where internal or external policies limit or exclude access to essential medicines for adequate pain and symptom management. This unfairness has led many to describe frustrations, moral and psychological distress, and residue eventually leading to burnout.18

An additional and significant experience is one of the “wounded healer,” recognizing that first responders in humanitarian crises are most likely to be people who are members of the effected population. Findings by Yantzi et al.19 indicate that this will mean that care providers may themselves be injured, traumatized, and managing shock and loss while trying to help others through the same experiences. Those who follow on the scene need to be attentive to the realities and limitations involved, while also respecting the dignity, autonomy, and sovereignty of the first responders in a crisis. These conditions may make it easier or harder for some to accept the limitations of treatment and offer palliative care.

Evidence indicates humanitarian actors are committed to mutual recognition of humanity. They draw on compassion for the people they encounter, provoking a strong desire to meet patients on an equal footing in order to preserve the dignity of patients while they are dying, and to provide palliative care where needed if at all possible.

Recommendations

In any humanitarian setting, some patients will die because of the event, such as disaster, conflict, outbreak of disease, while others will have been dying and in need of palliation even before the event. The professional duty of care extends to all patients, not just those whose lives can be saved or extended. Leaving a dying patient with no care is abandonment and a breach of fiduciary duty. Palliative care has been identified as a right.3,7,20,21 It is consistent with the commitment of humanitarian actors to attend to those in need and ease suffering. Consequently, palliative care should be integrated into humanitarian response efforts and not be treated as an added option or an unnecessary luxury that distracts from the “real” work of humanitarian response. The following should therefore be considered:

  • Training and guidance for field healthcare providers, whether local or expatriate22,23

  • Fair triage practices that recognize the needs of the dying without triaging-out patients who can benefit from palliative care17

  • Better understanding of the needs of patients and families with respect to culturally relevant palliative treatment

  • Availability of a kit of palliative care resources, including appropriate pain management treatments8

  • Recognition that the principles and practices of palliative care can extend across the illness trajectory and improve treatment of many other patients

  • Acknowledgment that palliative interventions need not be resource intensive. They can include many interventions, from surgery and medicines, to simply arranging for the patient to contact a family member they have be separated from because of the crisis, or finding a volunteer to sit by a patient, hold a hand, and listen to their stories12,15

  • Inclusion of palliative care in humanitarian response guidance, such as the Sphere Standards24

  • Research is needed to provide data that can improve understanding of the need for palliative care and its impact in humanitarian settings.11,14,22

Healthcare providers indicate feeling moral distress at the absence of palliative interventions and guidance. Such interventions will help provide more appropriate and compassionate care for patients living with life-limiting illness or injury and help support families through care and bereavement. An expanded ethos of humanitarian care that integrates palliative approaches will benefit patients, families, and care providers. There is both an ethical and legal imperative to do so.

References

1. UN General Assembly. International Covenant on Civil and Political Rights. December 16, 1966. United Nations Treaty Series, Vol. 999, p. 171. https://www.ohchr.org/en/professionalinterest/pages/ccpr.aspx. Accessed June 30, 2019.

2. UN General Assembly. International Covenant on Economic, Social and Cultural Rights. December 16, 1966. United Nations Treaty Series, Vol. 993, p. 3. https://www.ohchr.org/en/professionalinterest/pages/cescr.aspx.https://www.ohchr.org/EN/Issues/Education/Training/Compilation/Pages/e)GeneralCommentNo14Therighttothehighestattainablestandardofhealth(article12)(2000).aspx. Accessed June 30, 2019.

3. Brennan F, Gwyther L, Harding R. Palliative Care as a Human Right. Open Society Institute, Law and Health Initiative on Palliative Care and Human Rights; January 2008. https://www.opensocietyfoundations.org/publications/palliative-care-human-right. Accessed June 30, 2019.

4. Office of the High Commissioner for Human Rights. UN Committee on Economic, Social and Cultural Rights (CESCR), General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12). E/C.12/2000/4. August 11, 2000. https://www.refworld.org/pdfid/4538838d0.pdf. Accessed June 30, 2019.

5. World Health Organization (WHO). WHO Model List of Essential Medicines. 20th ed. Geneva: World Health Organization; 2017. https://apps.who.int/iris/bitstream/handle/10665/273826/EML-20-eng.pdf?ua=1. Accessed June 30, 2019.Find this resource:

6. World Health Organization (WHO). Integrating Palliative Care and Symptom Relief into Responses to Humanitarian Emergencies and Crises: A WHO Guide. Geneva: World Health Organization; 2018. Licence: CC BY-NC-SA 3.0 IGO. https://apps.who.int/iris/handle/10665/274565. Accessed June 30, 2019.Find this resource:

7. International Committee of the Red Cross (ICRC) Advisory Service on International Humanitarian Law. Respecting and Protecting Health Care in Armed Conflict and Situations Not Covered by International Humanitarian Law. Geneva: ICRC; 2012. https://www.icrc.org/en/document/respecting-and-protecting-health-care-armed-conflicts-and-situations-not-covered. Accessed June 30, 2019.Find this resource:

8. Nortjé N, Gwyther L, Kleinschmidt A, Ezer T. Ethical issues. In: Legal Aspects of Palliative Care. Cape Town, South Africa: Hospice Palliative Care Association of South Africa and Open Society Institute; 2009. www.hospicepalliativecaresa.co.za/legal resources. Accessed June 30, 2019.Find this resource:

9. Slim H. Humanitarian Ethics: A Guide to the Morality of Aid in War and Disaster. London: C. Hurst & Co. Publishers Ltd; 2012.Find this resource:

10. International Federation of Red Cross and Red Crescent Societies (IFRC), International Committee of the Red Cross (ICRC). The Fundamental Principles of the International Red Cross and Red Crescent Movement: Ethics and Tools for Humanitarian Action. Geneva: IFRC and ICRC; 2015.Find this resource:

11. Smith J, Aloudat T. Palliative care in humanitarian medicine. Palliat Med. 2017;31:99–101. https://doi.org/10.1177/0269216316686258Find this resource:

12. Frahm KA, Brown LM, Gibson M. The importance of end-of-life care in nursing home settings is not diminished by a disaster. Omega (Westport). 2011;64:143–155.Find this resource:

13. Marston J, Lima LD, Powell RA. Palliative care in complex humanitarian crisis responses. Lancet. 2015;386(10007):1940. https://doi.org/10.1016/S01406736(15)00825-9Find this resource:

14. Powell RA, Schwartz L, Nouvet E, et al. Palliative care in humanitarian crises: always something to offer. Lancet 2017;389:1498–1499. https://doi.org/10.1016/S0140-6736(17)30978-9Find this resource:

15. Rosoff PM. Should palliative care be a necessity or a luxury during an overwhelming health catastrophe? J Clin Ethics. 2010;21:312–320.Find this resource:

16. Rosoff PM. Caring for the suffering: meeting the Ebola crisis responsibly. Am J Bioeth. 2015;15:26–32. https://doi.org/10.1080/15265161.2015.1010995Find this resource:

17. Hunt M, Chénier A, Bezanson K, et al. Moral experiences of humanitarian health professionals caring for patients who are dying or likely to die in a humanitarian crisis. J Int Humanit Action. 2018;3(1):12.Find this resource:

18. Webster GC, Baylis FE. Moral residue. In: Rubin SB, Zoloth L, eds. Margin of Error: The Ethics of Mistakes in the Practice of Medicine. Hagerstown, PA: University Publishing Group; 2000:217–230.Find this resource:

19. Yantzi R, et al. Nothing in the world can serve those people like palliative care: qualitative analysis of refugee and provider experiences in Jordan, Rwanda, and Bangladesh. Presentation at MSF Scientific Days; London; May 8–10, 2019.Find this resource:

20. Fowler-Kerry S, Cunningham C. Thinking about the effects of a natural disaster on existing palliative needs. Int J Palliat Nurs. 2013;16:255. https://doi.org/10.12968/ijpn.2010.16.5.48147Find this resource:

21. Médecin San Frontières (MSF). Adapting our practices to respect dignity. 2009. http://www.msf.ca/en/article/adapting-our-practices-respect-dignity. Accessed February 16, 2017.

22. Matzo M, Wilkinson A, Lynn J, Gatto M, Phillips S. Palliative care considerations in mass casualty events with scarce resources. Biosecur Bioterror. 2009;7:199–210. https://doi.org/10.1089/bsp.2009.0017Find this resource:

23. Nouvet E, Sivaram M, Bezanson K, et al. Palliative care in humanitarian crises: a review of the literature. J Int Humanitar Action. 2018;3(1):5.Find this resource:

24. Sphere Association. The Sphere Handbook: Humanitarian Charter and Minimum Standards in Humanitarian Response. 4th ed. Geneva: Sphere Association; 2018. https://www.spherestandards.org/handbook. Accessed June 30, 2019.Find this resource:

Notes:

* The views expressed herein are those of the author and do not necessarily reflect the views of the United Nations.