This Human Rights Day, we examine the connection between palliative care and human rights. We also look at the work that has been done by human rights experts and palliative care advocates to ensure that the human right to palliative care is fulfilled.
Accessing palliative care
Imagine that you have been diagnosed with cancer, and that this is the disease that will kill you. Imagine that you have to process this information for yourself, as well as breaking the news to your family and friends and getting your affairs – both material and spiritual – in order.
Now imagine that these concerns are secondary to the debilitating, excruciating pain that obliterates all other thoughts from your mind. And your government does nothing to make sure that you get the cheap, effective medication that they promised to make available to you.
This is the reality of many millions of people in the world today, even though governments have an obligation under international law to ensure that their citizens have access to palliative care and pain relief. Denying such care violates the right to health and, in some cases, can even amount to “cruel, inhuman and degrading treatment” (OHCHR, 1966).
A focus on people
Addressing palliative care leaders at a seminar this November, Diederik Lohman, associate health director at Human Rights Watch, said: “When we talk about a human rights approach, we are talking about a focus on the people who are affected by human rights violations.
We tell their stories and what they have to say about their difficulties living with a life-limiting illness and accessing the health services they need. We use these stories to push for change.”
The human rights approach to palliative care is about using advocacy – that is, speaking out from the patients’ points of view – to ensure that governments fulfil their obligations to these patients in terms of their right to palliative care.
According to the UN Committee on Economic, Social and Cultural Rights: “States are under the obligation to respect the right to health by… refraining from denying or limiting equal access for all persons… to preventive, curative and palliative health services” (CESCR, 2000).
Article 7 of the International Covenant on Civil and Political Rights recognises that “no one shall be subjected to torture or to cruel, inhuman or degrading treatment” (OHCHR, 1966).
In March 2013, the UN Special Rapporteur on Torture and Other Cruel, Inhuman and Degrading Treatment or Punishment, Juan Mendez, addressed the Human Rights Council in Geneva to present a report which found that the denial of pain treatment and lack of access to essential pain medicines such as oral morphine can, in certain situations, be an example of a violation of Article 7 in a healthcare setting. Significantly the report also stated it is the government’s responsibility to prevent and address this.
The WHO Model Lists of Essential Medicines, specifies that children and adults should have access to the correct medications for palliative care and pain control. This is part of the minimum core content of the right to the highest attainable standard of health (CESCR, 2000).
Holding governments accountable
Countries are quick to sign up to uphold international agreements on human rights. However, although it is easy for them to agree to these treaties, there is no enforcement mechanism (such as a court) to ensure they actually implement their treaty obligations. Often this means that this work is not prioritised.
Currently, access to palliative care – and particularly pain relief – remain out of reach for the majority of those who need these services.
World Health Assembly resolution on palliative care
A major breakthrough for palliative care advocates has been the passing of the World Health Assembly (WHA) resolution: Strengthening of palliative care as a component of comprehensive care throughout the life course in May this year.
The resolution is a document, adopted by the World Health Assembly, the decision making body of the World Health Organization, pledging to strengthen palliative care in their countries and including recommendations on how to do so.
The resolution was adopted unanimously, so every UN member state has signalled their agreement with the recommendations it contains.
Even when governments pass laws that are meant to protect the rights of patients and their families to palliative care, various structural barriers mean that in practice it is difficult or impossible for these rights to be fulfilled.
The success of documents such as the WHA resolution on palliative care will depend on individual countries and what they do with these documents. It is up to citizens to hold their governments accountable and to provide them with guidance and technical assistance wherever possible to help them to implement this comprehensive work plan.
Human rights work
International human rights organisations such as Human Rights Watch are dedicated to ensuring that governments fulfil their obligations under international human rights law. They do this through reports and media work that expose human rights violations in their countries.
Recent work by Human Rights Watch in Mexico highlights the fact that, although the country has progressive laws on palliative care, structural barriers such as the lack of palliative care centres and difficulties in prescribing morphine, mean that patients are not yet able to fulfil their rights.
For example, Remedios Ramírez Facio, a 73 year old woman with pancreatic cancer who worked with Human Rights Watch to share her story, had to travel more than five hours by public transport in order to receive palliative care and pain medication.
“Unless we remind government officials of their obligations and help them to understand what those obligations are, the work may not get done,” said Mr Lohman.
It is up to concerned citizens and civil society organisations to make sure that it is easier for governments to uphold these obligations than it is to ignore them.
Palliative care and human rights resources
See the links below for resources to use in palliative care advocacy in your country: