This document has four parts: the first provides an introduction to the subject; the second develops the concepts of dignified death, palliative and relative care; the third provides a brief analysis from the perspective of human rights at a national and international level, and concludes with a fourth on considerations for companies in the health sector.
I. Introduction
The Mexican researcher, José Rubén Herrera Ocegueda, considers that the right to arrange one’s own life in Mexico is a constitutional right based on human dignity, as well as in the right to life, to the free development of personality, to freedom of thought, and in the prohibition of cruel, inhuman and degrading treatment, by asserting that “when life loses all sense of dignity, its disposal arises as a right of every human person.”[1].
The right to life, being the essential prerequisite for the exercise of other rights, necessarily implies the State’s obligation to protect life, guaranteeing the creation of the necessary conditions to prevent violations and to inhibit its agents from infringing said right, and in consequence, this obligation is extended to the rest of the citizenry, penalizing anyone who deprives another of life[2]. However, although the development of this right has been the foundation of a state apparatus aimed to safeguard the rule of law, it should be noted that this narrative has omitted the right to a dignified death, to the end of life, or the quality of death, as well as the possibility that a person autonomously decides to end its life.
Consequently, the discussion on the right to life seen from the perspective of the progressivity of human rights requires a new reflection that addresses what is colloquially known as the “good death”, that is, the implementation of palliative care in the last stage of life that guarantees that it develops in a dignified way and free from suffering.
In this sense, the “good death” or quality of death, becomes a determining concept of analysis as a means that guarantees safeguarding human dignity until the end of life, defined by experts in thanatology as “the quality of life that a sick person experiences in the last three days of his/her existence”[3].
The efforts to evaluate the quality of death of a human being, take the following into consideration[4]: a) that the patient is in the place chosen for its death; b) that the dying person is physically capable of doing what it wishes; c) without suffering pain; d) feeling at peace with God or with any religious entity in which the patient has faith, and with itself and its environment; e) its participation in normal daily activities; f) being able to stay at home as long as desired; g) the possibility of dying asleep, without consciousness; h) feeling in full use of its capacities; i) being able to complete any task considered important; j) being able to accept death and; k) live until an event considered crucial occurs. Likewise, to determine the degree of quality of death in the last three days of the patient, there are eight analog-visual scales, determined based on the evaluation of the following conditions: pain, nausea, depression, anxiety, drowsiness, appetite, well-being and suffocation[5].
II. Dignified Death, Palliative Care and Other Concepts.
From a legal perspective, dignified death can be defined as the death that, desired by a person, occurs assisted by all the appropriate medical palliative reliefs and care, as well as with all possible human consolations. That is, it is the event and the right to end life voluntarily without suffering, whether one’s own or that of others, in case there is nothing that can be done in terms of medical science to cure a fatal disease[6].
According to the World Health Organization (“WHO”), the so-called palliative care, is the set of practices and resources aimed at improving the quality of life of patients, regardless of their condition, and their circle in case they face problems inherent to a life-threatening disease. Its purpose is to prevent and alleviate suffering through the early identification, evaluation and correct treatment of pain and other problems, be they of a physical, psychosocial or spiritual nature.
Consequently, dignified death is a right based on the protection of the dignity of all human beings and the rights that arise from it, while palliative care are the means intended to guarantee the effective enjoyment of said right, since they are expressly recognized in the context of the human right to health.
It is important not to confuse these concepts with others that, although closely related, have substantial differences with those previously described, such as euthanasia or assisted suicide.
With respect to euthanasia, this consists of bringing forward the time of death in the event of an incurable disease, and can be direct or indirect. The first is to cause painless death at the request of the person victim of progressive incurable diseases (direct active euthanasia), or in hasting death by refraining from carrying out medical acts necessary for the continuation of life (direct passive euthanasia). While indirect euthanasia does not seek to shorten life but to alleviate suffering, through therapeutic procedures that usually have death as a side effect.
Likewise, dignified death, suicide and assisted suicide are often confused. And it must be emphasized that suicide is not the simple act, or voluntary omission, of immediately putting an end to one’s life, but consists of the “will not to live” and not the “will to die”, since the “will to die” implies that it derives from having lived and want to end the life cycle with dignity out of respect for that life, while the “will not to live” is a final decision to end life because it is despised or not tolerated.
Finally, dignified death, assisted suicide and euthanasia are not synonyms. The difference is that, in assisted suicide, the means or procedures to commit suicide are provided by a third party, intentionally and with authorization, however, this provider or facilitator is not medical or medical personnel. On the contrary, in euthanasia, professional help is provided, due to the existence of a previous illness or condition of the person seeking to die through active help in the imminent death, by someone willing to assist. In suicide, both generic and assisted, there is no terminal illness or chronic condition.
III. National and International Regulation
Internationally, regulation on dignified death and palliative care has increased in the last decade. Although it is a topic that has generated controversy, international and human rights organizations have not been indifferent to the discussion.
It has been the WHO, who has contributed the most to the development of the subject, due to the indissoluble link that exists between dignified death and palliative care with the right to health. In this regard, it has stated that “health care providers must assess and alleviate the physical, psychological and social suffering” of the patient. It has also established that for palliative care to be effective, it is necessary to apply a comprehensive multidisciplinary approach that includes the family and uses the resources available in the community, and can be effectively implemented even if resources are limited, being provided through tertiary care centers, community health centers and even in the home itself[7].
It should be mentioned that according to figures of the WHO, annually 40 million people approximately need palliative care worldwide, of which 78% of them live in low- and middle-income countries, and only 14% of people who need palliative assistance receive it[8].
The European Union has provided relevant criteria and regulations in this matter. Since 1976, it has provided relevant precedents, such as Resolution 613/1976 and Recommendation 779/2016 of the Parliamentary Assembly of the Council of Europe, in which it established that “the terminally ill wanted, mainly, to die in peace and dignity, with the support and company, if possible, of family and friends“, and that “prolonging life should not be, in itself, the sole purpose of medical practice, which should equally concerned with the alleviation of suffering“.
However, it was until 1999, when the Council of Europe recognized the right to a dignified death in its Recommendation 1498 on the Protection of Human Rights and Dignity of Terminally Ill and Dying, where it established that the protection of said right was divided into six aspects, namely: (i) providing truthful and complete information and respecting, where appropriate, the patient’s right to be informed, (ii) guarantying that no terminally ill patient is medically treated against their will, (iii) ensuring that the rejection of a certain medical treatment will be respected in the event that a living will, previous directives or advance directives have been formulated, (iv) receiving the necessary care to experience the illness and death process in the most comfortable way, (v) receiving treatment to mitigate physical pain, even if it shortens life, and (vi) receiving psychological support to alleviate mental suffering.
Another international instrument of reference is the Declaration of Venice on Terminal Illness of the of the World Medical Association (“WMA”), adopted by the 35th World Medical Assembly, at Venice, Italy, on October 1983, which was revised and updated by the 57th WMA General Assembly, in Pilanesaberg, South Africa, on October 2006[9]. Said instrument precisely addresses, several principles to consider for the provision of palliative care, among which the following stand out:
“I. The physician’s duty is to heal when possible, to alleviate suffering, and to protect the interests of his patients. There will be no exception to this principle, even in the case of an incurable disease.
II. In the care of terminally ill patients, the physician’s main responsibilities are to help the patient to maintain an optimal quality of life by managing symptoms, meeting psychological needs and allowing the patient to die with dignity and tranquility. Physicians should inform patients about the availability, benefits, and other potential effects of palliative care.
III. The patient’s right to autonomously decide must be respected regarding decisions in the terminal phase of life. This includes the right to refuse treatment and to request palliative measures to alleviate suffering, but which may have the additional effect of accelerating the death process.
It is worth mentioning that, contrary to the opinions of human rights organizations, the WMA has made clear in this and other international instruments its position on euthanasia and assisted suicide.
Finally, it is worth mentioning that in the Inter-American Human Rights System, neither the Commission nor the Interamerican Court (“IACHR”) have specifically ruled on this right. However, there has been extensive development on the scope and protection of the right to life. In this sense, in the framework of the obligation to guarantee a dignified life, the IACHR has recognized the connection between this right and the obligation of progressive development recognized in the American Convention on Human Rights.
In this regard, in the case of the Yakye Axa Indigenous Community vs. Paraguay, the IACHR stated that:
One of the obligations that the State must inescapably assume in its position as guarantor, in order to protect and guarantee the right to life, is to generate the minimum living conditions compatible with the dignity of the human person and not to produce conditions obstructing or impeding it. In this sense, the State has the duty to adopt positive, concrete measures aimed at satisfying the right to a dignified life, especially concerning people in vulnerable and risk situations, whose attention becomes a priority[10].
In the aforementioned case, the right to a dignified life was connected to article 26 of the Convention, extending the protection of this right, including within its scope the realization of the economic, social and cultural rights, expressly recognized in the Protocol of San Salvador, such as the right to health.
In Mexico, the precedent which regulates dignified death to a certain extent, is the Advanced Directive Law for the then Federal District, issued on 2008, whose purpose according to its article one, was to establish the provisions to regulate the granting of an advanced directive by a person capable under the law, to express its decision to be submitted or not to medical means, treatments or procedures seeking to prolong life, in case being at a terminal stage and when due to medical reasons, it is impossible maintain it in a natural way, protecting the human dignity at all times.
In order to exercise an advance directive, there are two modalities, (i) by a document, processed under oath with a notary public, and (ii) by a format granted in public, private and social health institutions.
The advance directive document is an “instrument, granted under oath with a Notary Public, in which a person capable under the law and in full use of his mental faculties, states the free, informed, serious, unequivocal and repeated request to be submitted or not to medical means, treatments or procedures which promote Therapeutic Obstinacy”[11].
Likewise, the format is a “Palliative Care Instructions” document previously authorized by the Ministry of Health, signed by the terminally ill patient, in presence of the corresponding health personnel and two witnesses, which expresses the will to continue with the treatments which aim to extend life or to suspend curative treatment and start palliative care, preserving the dignity of the person at all times.”[12].
On January 5, 2009, was published in the Federal Official Gazette the reform to article 184 of the General Health Law, which adds article 166 Bis, concerning the dignity of patients in terminal situation, to guarantee life quality, as well as dignified death, in addition to publicizing curative and palliative treatments.
Likewise, the General Health Council issued a master catalog guide of palliative care[13], whose purpose is to improve the quality of health care, for patients with advanced, progressive and incurable conditions with a limited life prognostic estimate in the three levels of health care.
Palliative care is part of medical care at the end of life for a dignified death, however, the amendments required to constitutionally guarantee them are still pending, due to the absence of a reform to the right to health contained in article 4 of the Political Constitution of the United Mexican States; its only current express regulation is the Advanced Directive Law of the Federal District of 2008, followed by the reform of the General Health Law in 2009 with a new title related to palliative care, the criteria issued by the Ministry of Health in 2014 and the guides published by the General Health Council in the same year establishing the mandatory nature of palliative care.
The Constitution of Mexico City was established as the first legal instrument in the country to recognize dignified death as a fundamental right, as it was explicitly included in the local constitution. In this regard, Article 6, section A, referring to the right to personal self-determination, states that said right should enable all people to fully exercise their abilities to live with dignity, further asserting that a dignified life implicitly contains the right to a dignified death.
The aforementioned instrument, in its article 11, which addresses the guarantee of an inclusive city, in its section F, on the rights of the elderly, recognizes as a right to be guaranteed to this vulnerable group, specialized health services and palliative care, once again recognizing their instrumental nature as an effective guarantee mechanism for human dignity.
Finally, it is worth mentioning that this right to a dignified death, although it has not been recognized per se in the federal constitutional text, its existence is supported in the domestic regulatory framework of different rights, values and principles that the Political Constitution of the United Mexican States recognizes and safeguards in its first article, such as the right to life, at a dignified level of life, to the free development of personality and personal integrity, as well as in the principles pro personae, and of autonomy and solidarity, in connection with the development of the jurisprudence of the Supreme Court of Justice of the Nation (SCJN) regarding human dignity, which indicates that this is the basis and condition for the enjoyment of other rights, and for the integral development of personality, since this corresponds to respecting and protecting the interest inherent to every person, by the mere fact of being one, to be treated as such and not as an object[14].
IV. Considerations for the Health Sector Industry
At the international level, dignified death is implicitly connected to the specific needs of terminally ill patients, as well as with the obligation to respect and protect the dignity of these people. However, the European Human Rights System is the one that has developed this subject-matter the most, standing out its jurisprudence on the following cases Pretty v. United Kingdom (2002), Haas v. Switzerland (2011), Lambert v. France (2015) and Charlie Gard v. United Kingdom (2017).
One of the biggest problems in Mexico, and of the world in general, is the existence of excessively restrictive regulation of essential palliative drugs since, due to this excessive control, people are deprived of access to adequate pain relief and palliative care means.
An area of opportunity for health sector companies in this field is the lack of training and awareness of palliative care by health professionals, since it constitutes a considerable obstacle to programs to improve access to those cares. Consequently, the development of these type of services by this industry may constitute a competitive advantage in the face of the scarcity of said services.
In the Mexican State, human dignity is a constitutional mandate erga omnes, which must be understood as the central nucleus and the interest inherent to every person by the mere fact of being one, to be treated as an end and not as a means, just as the SCJN has already stated in its jurisprudence, as well as in the advanced directive law, the General Health Law with the inclusion of palliative care, and the recognition as a right, that the Constitution of Mexico City made concerning human dignity.
The health emergency due to COVID-19 has caused an increase in deaths in Mexico and the world, which is why the discussion on dignified death and palliative care is especially relevant. Once the pandemic is over, many industries will transform, and the health and burial services will be no exception, as the global need for palliative care will continue to increase as a result of the increasing burden of non-communicable diseases, the aging process of the population, and now, the appearance of new diseases; therefore, new and greater regulation in this regard is expected, with extensive obligations to the business sector in this area.
The inclusion of this right by the capital’s Constitution anticipates the eventual and imminent issuance of specialized regulation in the matter, which will generate a framework of responsibilities for public and private health institutions, their users, and even for industries in related sectors, such as burial and care services providers.
An important challenge for the health personnel will be to mitigate the suffering of patients at the end of their lives, since people have equal rights to be treated in conditions of respect, equality, and dignity at the terminal stage, to achieve the accompaniment of the patient in dignified conditions until his death due to the advance of the COVID-19 pandemic, especially if we consider that early palliative care significantly reduces unnecessary hospitalizations and the use of health services, thus generating greater effectiveness.
ECIJA México, S.C.
[1] Herrera, José., op. Cit., pp.111 and ss.
[2] Frosini, Vittorio. Derechos humanos y bioética, Colombia, Temis, 1997, p.14.
[3] Walston, Kaylor. et all. “Comporting the quality of death for hospice and non-hospice center patients”. En Behar, Daniel., op. Cit, pp-102 and ss.
[4] Ídem.
[5] Bruera. “The Edmonton symptom assessment system (ESAS: a simple method for the assessment of palliative care patients”. En Behar, Daniel., op. Cit. Pp. 104 and 105.
[6] Macía Gómez, Ramón (October 2008); “El concepto legal de muerte digna”, https://derechoamorir.org/wp-content/uploads/2018/09/2008-concepto-legal-muerte-digna.pdf
[7] https://www.who.int/cancer/palliative/es/
[8] World Health Organization, palliative care information site, available at the following link: https://www.who.int/es/news-room/fact-sheets/detail/palliative-care
[9] https://www.wma.net/es/policies-post/declaracion-de-venecia-de-la-amm-sobre-la-enfermedad-terminal/
[10] Interamerican Court H.R. Case of the Yakye Axa Indigenous Community vs. Paraguay. Fondo reparaciones y costas. Judgment of June 17, 2005. Series C No. 125, paras. 162 to 163. I / A Court HR. Case of the Yakye Axa Indigenous Community vs. Paraguay. Fondo reparaciones y costas. Judgment of June 17, 2005. Series C No. 125, paragraphs 162 to 163.
[11] Art. 3, Section III of the Advanced Directive Law for the Federal District (sic).
[12]Art. 3, Section V of the Advanced Directive Law for the Federal District (sic).
[13]http://www.cenetec.salud.gob.mx/descargas/gpc/CatalogoMaestro/445_GPC_Cuidados_paliativos/GER_Cuidados_Paliativosx1x.pdf
[14] Thesis: 1a./J. 37/2016 (10a.), Gaceta del Semanario Judicial de la Federación (Federal Judicial Gazette), Décima Época (Tenth Term), 2012363 Primera Sala (First Chamber) Libro 33 (Book 33), agosto de 2016 (August 2016), Tomo II (Volume II), Pag. 633 (Page 633) Jurisprudencia Constitucional (Constitutional Jurisprudence), DIGNIDAD HUMANA. CONSTITUYE UNA NORMA JURÍDICA QUE CONSAGRA UN DERECHO FUNDAMENTAL A FAVOR DE LAS PERSONAS Y NO UNA SIMPLE DECLARACIÓN ÉTICA. (HUMAN DIGNITY. CONSTITUTES A LEGAL PROVISION THAT CONTEMPLATES A FUNDAMENTAL RIGHT IN FAVOR OF THE PEOPLE AND NOT A SIMPLE ETHICAL STATEMENT).
