In 2009, México enacted a series of amendments to its health law to better address the healthcare needs of people with terminal illnesses. The amendments pursued several objectives, including:
They set out a series of rights of people with terminal illness and their families, as well as powers and obligations of health institutions and healthcare personnel. In 2013, the government issued additional regulations, a reglamento, that clarifies and elaborates on the amendments.[186]
The amendments explicitly only apply to people with a prognosis of less than six months, rather than to all people who require palliative care. In this respect, México’s law falls short of WHO’s recommendation that people with life-limiting illnesses receive palliative care from the time of diagnosis.[187] As a result, as Mexican Supreme Court Justices José Ramon Cossío Díaz and José Fernando Franco González-Salas note in a recent article, people with a diagnosis of more than six months who suffer severe pain are “completely unprotected.”[188] México’s health law does establish that “integral treatment of pain” is a general objective of the health system, irrespective of diagnosis or prognosis and pain is defined broadly as including physical and mental pain.[189] However, the law does not provide any specifics on how this objective should be operationalized.[190]
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Access to Health Services |
Right of Autonomy |
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Receive integral health services. |
Receive clear, opportune and sufficient information about his illness and treatment options. |
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Be admitted to a health institution; Receive outpatient and inpatient attention. |
Give informed consent in writing for the use or non-use of treatment, medicines or palliative care appropriate for his illness, needs and quality of life. |
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To leave voluntarily. |
Assign a legal representative or person of confidence for in case the ability to express his wishes is lost. |
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To receive dignified, respectful and professional treatment that aims to preserve quality of life. |
Formulate advanced directive which must be respected; revoke the advanced directive. |
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To request that the physician administers medicines to relieve pain. |
Renounce, abandon, or refuse at any moment to receive or continue treatment considered extraordinary. |
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To choose to receive palliative care in a private home. |
Voluntarily suspend curative treatment. |
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To receive spiritual care. |
Request that curative care be re-initiated. |
While the legislator left decisions on the specifics of the implementation of the amendments to the health ministry, the law sets out in broad terms a vision for integration of palliative care into the healthcare system, very much in line with México’s international human rights obligations and the recommendations by WHO and WHA. Among others, the following broad obligations flow from the law:
The amendments instructed the health ministry to issue the “regulations and official Mexican norms that are required to guarantee the exercise of the rights contained in this title” within 180 days.[191] As noted, in December 2013, the ministry issued the regulations but the official norm (Norma Oficial Mexicana) has still not been issued. In absence of that norm, as Justices Cossío and Franco note, this is an “obstacle for the standardization of the services because the necessary parameters for clarifying what resources—human and material—a specialized palliative care unit requires are absent.”[192] The publication of the official norm is expected in October 2014.[193]
The rights articulated in the law and regulation (see Table 5) are broad and sweeping enough that they can only be realized if all healthcare institutions in México have personnel that offer palliative care. Indeed, the text of the palliative care chapter of the law suggests strongly that it requires all institutions of México’s national healthcare system to offer this health service.
The law states, for example, that institutions of the national healthcare system “offer appropriate attention to patients with terminal illness” and “provide palliative care corresponding to the type and grade of the illness from the moment the terminal illness is diagnosed until the last moment.”[194] The law does not provide for any exceptions or for mechanisms that would allow institutions that do not have palliative care to refer patients to healthcare institutions that do.
The law, however, is vague on how exactly healthcare institutions should offer palliative care, seeming to suggest a significant level of discretion on the part of the institutions. It states that institutions should “promote the creation of specialized areas that provide attention to patients with terminal illness.”[195] The regulation adds that healthcare institutions “shall have the infrastructure, suitable personnel, adequate material and technological resources for medical attention in palliative care in accordance with the level of complexity, the decision making power, the availability of financial resources, organization and functionality.”[196] In some places, the regulation appears less categorical than the law, referring to “institutions that provide these services.”[197] Both the law and regulation are silent on accountability for implementation of the legal requirements under the law.
The law and regulation furthermore do not address the role of primary care providers in palliative care, referring only to the obligations of specialists at secondary and tertiary care institutions in providing the service.[198] Primary care providers, however, will need to play an essential role in caring for patients who spend their last weeks or months at home. Justices Cossío and Franco comment that the focus in the legislation on secondary and tertiary level institutions is “not the most well-suited for opening access to these services as the patient has to move to these institutions” which normally are located only in major cities. They recommend considering that the legal context should “incentivize the participation of institutions of the primary level…This way, palliative care would be within reach of more people…”[199]
Yes, it is possible to attend to a [dying] patient at home but only with good guidance. This would save the social insurance in care and cost. But they have to provide all that is needed to allow for care at home. – Adriana Lucía Preciado Santana[200]
The law states that patients with terminal illness have the right to “opt to receive palliative care in a private home,” an important right given that many people prefer to die in their own homes surrounded by relatives.[201] The law and regulation, however, are not clear on how exactly home-based palliative care is to be delivered and whether healthcare workers would visit the homes of patients who opt to exercise this right.
The relevant provisions of the law and regulation focus more on healthcare workers facilitating care at home than on actually providing the care. The law, for example, states that healthcare institutions must “[p]rovide services of orientation, advice and follow-up” to patients and their families if palliative care “is realized in a private home.”[202] The 2013 regulation specifies that as part of the palliative care plan, the treating physician must “consider those actions that need to be undertaken in the home of the patient in terminal stage by family members, caregivers or volunteers.”[203] It also instructs members of the multidisciplinary palliative care team to offer “training to family members, caregivers and volunteers who will be in charge of attention and basic home care for the patient in terminal phase.”[204]
The law and regulation also oblige the ministry of health to put in place a free phone line to offer orientation, advice and follow-up to patients in terminal phase of illness, who opt to receive palliative care at home, as well as their family members or confidante.[205] The regulation adds that the health ministry must be “expeditious, attentive and respectful and sufficient to satisfy the needs for information of the person who calls.”[206]
In their article on the palliative care amendments, Justices Cossío and Franco call the right to opt for home-based palliative care “a significant challenge” for health care providers because it “requires realizing various activities outside the facilities where they normally work.” They also note that offering care at home is “an important step” in realizing the legislation’s objective to ensure people with a terminal illness can die in dignified conditions.[207]
The law and regulation clearly determine that health personnel must have adequate training in palliative care. The law holds, for example, that “treating physicians and the health team that offer palliative care…must be adequately trained humanly and technically by institutions authorized to do so.”[208] To ensure such training the law stipulates that healthcare institutions must “guarantee the training and continued education of human resources in healthcare in the area of palliative care and attention to patients in terminal phase."[209] The regulation specifies that healthcare institutions must “seek to ensure that the training and continued education of professionals, technical, and auxiliary health staff in the area of palliative care is conducted at least once per year.”[210] Justice Cossío and Franco call the law’s provisions on training a “great challenge” as they require “availability of trained personnel throughout the republic.”[211]
The law, however, does not provide any guidance on what institutions and individuals are authorized to conduct such trainings, the contents of the trainings, or offer any accountability mechanisms. The law is furthermore silent on the integration of palliative care education into the curricula for students of medicine, nursing, psychology, and social worker—an essential step without which implementation of the law will fail.[212]
México’s health law and the regulation on palliative care clearly require that essential palliative care medicines be available and accessible. The 2013 regulation explicitly states that health institutions “must have a sufficient supply of pharmaceutical and supplies for the management of pain of the patient.”[213] The regulation does not determine what is considered a “sufficient supply.” These kinds of determinations are generally included in México’s official norms.