The Life Esidimeni tragedy: a post-apartheid violation of health and human rights

The Life Healthcare Esidimeni tragedy is one of the most significant violations of health and human rights in post-apartheid South Africa.

The CHESAI collective held a session to engage more deeply with the Life Esidimeni tragedy in order to generate some health systems lessons. In addition to mapping out a timeline of events, we discussed and reviewed some of the transcripts of the 2017/8 hearings. This blog reflects our key collective thoughts.

 

Background
In 2015, the Member of the Executive Committee (MEC) for Health in Gauteng province announced the termination of the contract between the Gauteng Health Department (GHD) and Life Esidimeni. Consequently, around 2000 people, who were receiving highly specialised chronic psychiatric care, were to be moved out of Life Esidimeni to families, NGOs and psychiatric hospitals providing acute care, ostensibly to save money and deinstitutionalise care. After the move, at least 144 people died in these settings from causes including starvation and neglect, and more than 20 are still unaccounted for.

The patients’ fate was the subject of a report by the Health Ombud, Prof. Malegapuru Makgoba. The Ombud’s report outlines the complexity of what happened to the patients and the painful, raw emotions of their families and how they were failed by the state. It also recommended an arbitration process that was presided over by former Deputy Chief Justice Dikgang Moseneke. In March 2018, Moseneke ordered government to compensate 134 claimants with a total of just over R 159 million, after finding that the GHD violated the rights of patients and their families.

 

Key points from our discussion

In our opinion, the Life Esidimeni tragedy reflects a state that failed because of a perfect storm – building on a history of fear, hierarchical systems and lack of disciplinary procedures, as well as the centralisation of power.

The apartheid system was built on fear and hierarchy and much of this continues in how government departments are managed and decisions are made without accountability. The Esidimeni hearings revealed a lack of clarity about who was making decisions, and where. The hearings also revealed an organisational culture of fear where more junior officials were ‘put under pressure to do as directed’. A clear message in the Esidimeni Report is that there was an overwhelming sense of disempowerment from GHD staff below the level of director, as well as the fear-of-decision-making and compliance culture influenced by apartheid history.

The Esidimeni tragedy also illuminates the relationship between the national and provincial departments of health and the fact that health is a concurrent (both national and provincial) competency, which resulted in the national Minister not being formally consulted, advised or informed of the project. He was alerted by Section 27, a civil society advocacy organisation.

From the hearings' transcripts, there seems to be a complicated set of different (mis)understandings: what should have happened, what actually happened and quite a substantial 'did not know'. This resulted in a complete lack of accountability and exposed layers of power and discordant relationships, as well as miscommunication within the GHD and with key stakeholders such as family members and NGOs appointed to care for the mental health care users. A telling finding from the Ombud’s report illuminates some of these dynamics:

“If [the MEC, the GHD head, and Director of Mental Health] did not know how many patients had died by the 29th November 2016 as confirmed in their evidence, in a matter that has caused so much ‘pain and anguish’ in families and has attracted so much national and international interest, then one must wonder what else they do not know in the system they preside over.”

 

The cost containment narrative put forward as the motivation for the deinstitutionalisation also seems without substance. As noted the Ombud’s report:

“The decision to terminate the contract precipitously contradicted the National Mental Health Policy Framework and Strategy, the cost rationale could not be justified above the rights of the mentally ill patients to dignity and the state’s constitutional obligation to accessible health care. This precipitous approach was not supported by available research experience or legislative prescripts.”

 

Patients were transferred rapidly and in large numbers from Life Esidimeni to unstructured and unregulated NGOs that were ill capacitated and prepared to support their specialised needs transfer. The project occurred against widespread professional, expert and civil society stakeholders’ warnings and advice, as well as evidence of the unfolding tragedy in media reports.

From a human rights/legal perspective, the tragedy violated a series of rights set out in international human rights treaties that South Africa has adopted and assented to. These include the International Covenant on Civil and Political Rights; International Covenant of Economic, Social and Cultural Rights; International Covenant on the Rights of People with Disabilities; and the African Charter on Human and Peoples’ Rights.

The rights in question are also contained in the South African Constitution: the rights to life (section 11); dignity (section 10); freedom from torture, cruel, inhuman and degrading treatment (section 12 (1)(e)); and health (section 27), including its underlying rights such as the right to food and water. It also disregarded a series of legal and policy frameworks relevant to mental health, including the National Health Act, Mental Health Care Act, and National Mental Health Policy Framework and Strategic Plan.

Human rights norms and principles also emphasize accountability, participation and transparency at each programmatic stage. The tragedy was characterised by lack of accountability and transparency, including the decision to end the Life Esidimeni contract. Mental health care users were not consulted before the termination and once they became aware, their attempts to dissuade government were ignored.

Bodies set up to ensure accountability, such as the Mental Health Review Board (MHRB), also failed to execute their accountability role to avert the suffering of the mental health care users. The arbitration hearings revealed that the MHRB knew of the massive discharge of the mental health care users, but did nothing. With such egregious rights violations, it is not surprising that, after the arbitration proceedings, government was ordered to pay compensation.

In essence, the Marathon Project, as it was named, trampled on the patients’ fundamental human rights to life, dignity and health and exposed a system that is open to being corrupt and unaccountable for the 144 lives lost in the trauma, one of the biggest since 1994.

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Click here for a more detailed timeline of the Life Esidimeni tragedy and a fuller unpacking of its human rights aspects

 

Reflections and lessons for the health system

The tragedy paints a very sad and painful picture of a system out of tune and disconnected – not only with itself, but with the people it is said to serve; in this case those who are already marginalized and struggling with mental health issues and access to care. It sends a message of mental health care users as disposable, silent and already marginalized, with many dying of hunger, in the most inhumane conditions and without the knowledge of their families.

In our session, we discussed, first, how we could apply human rights and legal instruments in the health system to ensure dignified care.

Second, we reflected that a more systems thinking approach can possibly be used by those working in the health system to foreground contextual social and political factors such as social justice and equity. It would also need understanding of systems issues such as governance, leadership and accountability which seem to be inadequate and could be addressed in capacity building and training initiatives.

Third, we grappled with our roles as activist academics and explored how we could amplify our voices. One idea was to partner with other advocacy organizations such as Section 27.

Fourth, we thought it important to rethink the accountability architecture and mechanisms within the GHD and the MHRB, to outline both the accountability obligations and the consequences of silence, inertia and deferring responsibilities. A central question is how can we ensure that we hold those in power accountable when they violate basic human rights and lack empathy for those they are there to serve? A clearer picture of the accountability architecture and related mechanisms are needed to speak truth to power and prevent future tragedies. This should be the spine of our democratic governance system and accountability at various levels, including the institutional and community.

Fifth, the Life Esidimeni tragedy shows that there is much work to be done across sectors to raise awareness, create platforms for dialogue on mental health issues and empower communities to take back the power for holding government accountable. Mental health is still a stigmatised and often ‘invisible’ issue with patients often at the mercy of systems that should be concerned with providing access to care and recognising their humanity. As stated by the committee representing the family members of the Esidimeni victims:

“There are broader issues that need to be addressed, for the sake of all who are affected by mental health issues. They include ensuring that the Gauteng Department of Health and the Office of the Premier fundamentally improves mental healthcare services in public health facilities year on year, and actively campaigns to break the silence and the stigma around mental health in public health facilities and communities. It must also continue to create awareness and promote the rights of MHCUs – as well as ensuring safe facilities with proper management, adherence to the regulations and the development of proper governance policies.”

 

Much work remains to ensure dignified care and the prioritisation of mental health within government and civil society. As the Ombud recommended, proper deinstitutionalisation requires a focus on community-based primary and specialist multidisciplinary teams, which must be developed before the start of the process and receive appropriate financial and human resources. Also, we need to re-think and reconfigure leadership and management programmes in health, so that officials are not silent and fearful, and can manage up towards their superiors in the hierarchical system when they violate health and human rights.

 

Conclusion
The CHESAI session was incredibly powerful to connect with the traumatic narrative of the families and the unfolding tragedy, where the most vulnerable were being silently violated; meetings were held but no urgency noted; appropriate communication and accountability were starkly absent. The silence and disinterest of those responsible was deafening.

The Life Esidimeni story is a prism through which to see myriad systems challenges. The CHESAI discussion left us unsettled and reminded us to remain vigilant and activist on health issues and ensure accountability at all levels.

We have to take time to listen to the stories of the mental health care users and their families, and transform our emotions and insights into actions where we work, within the health system, and within our democracy more broadly.

Tanya Jacobs, PhD student, School of Public Health, University of the Western Cape; Daphine Kabagambe Agaba, Post-doctoral researcher, School of Public Health, University of the Western Cape; Leanne Brady, Research Fellow, Health Policy and Systems Division, University of Cape Town

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