Founded upon a firm belief in compassion and the dignity of the human person, palliative care aligns closely with the principles of human rights in patient care. Palliative care improves the quality of life of patients and is defined as the holistic management of physical, psychological, legal, and spiritual problems faced by patients with life-threatening illness and by their families. In terms of managing physical problems faced by patients, it provides relief from distressing symptoms including pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, problems with sleep, and many other symptoms [2, 3].
The World Health Organization (WHO) indicates that only 14% of people who need palliative care worldwide currently receive it . An important part of palliative care is addressing chronic and severe pain. Every year, tens of millions of people suffer from moderate to severe pain without access to appropriate medicine for pain, including 5.5 million terminal cancer patients, 1 million end-stage HIV/AIDS patients, and 800,000 patients suffering injuries caused by accidents or violence . With the older population, one of the most rapidly growing age groups in the world , and the increasing prevalence of non-communicable diseases,  the need for palliative care is only expected to rise . The Worldwide Palliative Care Alliance recommends that all governments integrate palliative care into their country’s health system alongside curative care . The patient focus in palliative care means it can be delivered in a variety of settings, including in hospitals, outpatient clinics, residential hospices, nursing homes, community health centers, and patients’ homes.
The WHO currently lists 20 palliative care medications in its essential medicines list . These medicines, which include morphine and other opioid analgesics, are indispensable for treating the various symptoms, particularly pain, and other symptoms associated with many life-limiting conditions . The importance of ensuring access to pain medicines was also affirmed by the World Health Assembly in its first global resolution on palliative care in 2014, which acknowledges that palliative care is a core component of health systems and calls upon the WHO and Member States to ensure the availability of narcotic medicines for symptom management (also referred to as “controlled medicines,” which are those medicines that have manufacture, possession, or use regulated by a government) . Morphine, in particular, is not protected by patent and can cost as little as a few US cents per unit . Yet, approximately 80% of the world’s population still has no access to it . This figure reflects gross inequalities in access to controlled medicines for pain treatment: 92% of the world’s morphine is consumed by 17% of the world’s population, primarily in North America, Oceania, and Western Europe .
International human rights law has long considered palliative care integral to the right to health and the availability of essential pain medicines as one of the right’s core components (see also [14, 15]). Palliative care is recognized in the UN Committee on Economic Social and Cultural Rights’ (CESCR) authoritative interpretation of the right to the highest attainable standard of health (General Comment 14), whereby it provides that states are obliged 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 . The CESCR also provides that states cannot, under any circumstance whatsoever, justify non-compliance with the obligation to provide access to essential medicines, as defined by the WHO essential medicines list [10, 16]. It has also affirmed the importance of providing care for chronically and terminally ill persons, “sparing them avoidable pain and enabling them to die with dignity” .
The Inter-American Convention on Protecting the Human Rights of Older Persons, adopted in June 2015, is the first treaty to explicitly articulate a right to palliative care. It draws on a number of rights to lay out a package of essential safeguards and guarantees that are critical to the right to palliative care. Under the Inter-American Convention, states are required to provide access to palliative care without discrimination, prevent unnecessary suffering and futile procedures, and enable older persons to expressly indicate in advance their will and instructions with regard to health care interventions, including palliative care .
This paper will discuss rights relevant to patients in the context of palliative care beyond the right to health; to freedom from torture and cruel, inhuman, and degrading treatment; [18,19,20,21,22] to non-discrimination and equality; [18, 20, 21, 23,24,25,26] to bodily integrity; [20, 24,25,26,27] to information; [18, 24,25,26] to privacy and confidentiality; [18, 21, 27] and to a remedy [18, 21, 24, 28]. Additionally, it will examine the rights relevant to palliative care providers, to decent working conditions, [23, 24] to freedom of association, [14, 18, 21], and to due process [18, 21, 24].
Palliative care patients’ rights
International conventions speak specifically on the issue of the right to be free from torture and cruel, inhuman, and degrading treatment. Access to adequate pain treatment has been considered a requirement under this right. Two consecutive UN Special Rapporteurs on Torture and the UN Special Rapporteurs on Health have stated that the denial of access to controlled pain relief medicines, if it causes severe pain and suffering, may amount to cruel, inhuman, or degrading treatment or punishment: “The failure to ensure access to controlled medicines for the relief of pain and suffering threatens fundamental rights to health and to protection against cruel inhuman and degrading treatment… [Governments] 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” [29,30,31].
The right to non-discrimination and equality, part of many human rights treaties, is also particularly relevant to palliative care patients. General Comment 14 provides that health facilities, goods, and services must be accessible to all, especially the most vulnerable or marginalized sections of the population, without discrimination on any of the prohibited grounds of “race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status” . This means people living with HIV/AIDS, people who use drugs, sex workers, and ethnic minorities cannot be denied palliative treatment or care and must be provided with the same level of care, in the same conditions, as other patients .
The right to bodily integrity and the right to information are also relevant in the context of patient rights and palliative care and are often interconnected. The right to bodily integrity refers to a patient’s autonomy and self-determination over his/her own body, and deems any unconsented intrusion—physical or non-physical—to be a violation of this right, including medical treatment performed without a patient’s informed consent or ignoring patient wishes regarding treatment.
The right to information requires that, prior to consent, information be provided about the likely benefits and risks of proposed treatment and non-treatment . In the context of palliative care, the right to information may include persons receiving all relevant information about their prognoses, treatment options, and the side effects of medication available to treat their conditions or symptoms.
Key international human rights instruments provide that medical information must be provided to the patient in an accessible and easily understood manner which is commensurate with cultural identity, level of education, and communication needs, and which respects the right to give and receive instructions in advance with regard to health care interventions. Importantly, persons receiving palliative care are also entitled to the right to privacy and confidentiality [17, 18, 23]. This means that patients have the right to have their health information and data kept confidential. Patients must always be given access to their own health information and be able to authorize the disclosure of such information .
The application of a human rights framework to patient care requires a range of measures, such as adequate laws and policies, documentation of abuses within healthcare service delivery, and—notably—legal remedies to address them . When the state takes no effective action to address the violations of the human rights relevant to patient care, the patient’s right to a remedy is also violated (for more rights engaged in this context see [1, 32]).
Palliative care providers’ rights
The human rights of palliative care providers (doctors, nurses, social workers, and professional caregivers) are inherently connected to the rights of patients. A framework of rights protecting providers means providers are more likely to be supported and motivated to provide palliative care in a manner that upholds the rights and dignity of patients and may mean greater state commitment to resourcing healthcare systems .
Providers of palliative care have the right to decent working conditions. They are entitled to enjoy just and favorable conditions which ensure fair wages, safe and healthy working conditions, and reasonable limitation of working hours. Examples of violations of this right include palliative care nurses being paid less than the national minimum wage, being required to work for excessive periods of time, or medical staff being exposed to high levels of radiation in the treatment of cancer patients .
Likewise, palliative care providers must have the right to freedom of association so that they may join professional associations where they can negotiate their working conditions, have access to continued training opportunities, and have the tools to challenge laws and practices that impose obstacles to their work . It is equally important that palliative care providers have the right to due process if faced with any concerns related to their employment or medical practice . For example, if a nurse facing disciplinary proceedings is unable to obtain access to all the evidence presented against her in advance of the hearing, or a doctor facing a medical negligence suit has still not been given a hearing date 5 years after commencement of the proceedings, both are situations that violate due process and may have a direct impact on whether or not the palliative care provider is able to continue providing care.