THE HUMAN RIGHTS IMPLICATIONS OF THE LACK OF PALLIATIVE CARE

Catherine is a 28 year old mother who lost her daughter to advanced leukemia. 

After doctors had informed her that there was nothing they could do about her condition, they were sent back to their home in rural Mayuge District.

The daughter was in excruciating pain and her mother could not afford the best pain-relief medication; but most importantly both mother and daughter did not have the necessary support to prepare themselves psychologically for the looming death.  

Palliative care according to the World Health Organisation is an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illnesses, through the prevention and relief of pain and suffering by means of early identification and impeccable assessment of pain and other problems, physical, psychological and spiritual.

This does not mean that palliative care is only given to patients facing an inevitable death. In many cases, it is provided alongside treatment from the time of diagnosis till recovery.

Palliative care involves a comprehensive approach to health care which includes but is not limited to pain relief, symptom alleviation, counseling for the patient and family to affirm life and regard death as a normal process etc.

Palliative care as a human rights issue is part of the content of the right to health and because of the inter-relatedness of human rights, it also forms a big part of the right to dignity and freedom from cruel, inhuman degrading treatment.  

General Comment 14 by the United Nations Committee on Economic, Social and Cultural Rights elaborates on the right to the Highest Attainable Standard of Health to include access to curative, rehabilitative and palliative care services. It further states that there should be “attention and care for chronically and terminally ill persons, sparing them avoidable pain and enabling them to die with dignity.”

The UN Special Rapporteur on Torture, Juan E Mendez in his report concluded that “[w]hen the failure of States to take positive steps, or to refrain from interfering with health-care services, condemns patients to unnecessary suffering from pain, States not only fall foul of the right to health but may also violate an affirmative obligation under the prohibition of torture and ill-treatment.”

This means that states should as a minimum core obligation on the right to health ensure the accessibility and availability of essential medicines for the relief of pain and suffering in order to fulfill its obligations under the prohibition of torture and cruel inhuman degrading treatment. The WHO Essential Medicines List includes at least 14 palliative care medicines that should be accessed easily in all countries.

The accessibility of inexpensive and easy-to-find pain medication should be made priority by incorporating them into the National Public health policy/plan.

In Uganda, although the right to palliative care is not expressly set out in the constitution, it can be read into as a component of the right to health as well as Uganda’s International Human Rights obligations.

Uganda has made significant strides in ensuring that there is affordable and culturally appropriate palliative care mainly through efforts of Civil Society Organisations, the government is slowly coming on board but more needs to be done to ensure availability of free pain medication in public health facilities, training of staff such as doctors, nurses and counselors in palliative care approaches in order to help families like Catherine’s who cannot afford to get specialised care from private service providers.  

Ms. Daniella Kagina

Litigation Program

Intern at Center for Health, Human rights and Development (CEHURD).

PREVENTION IS BETTER THAN CURE

Last week I read an article in the papers that highlighted the worrying number of teenage mothers in the Busoga kingdom. This comes barely a month after another report indicated that 7000 teen mothers were registered in Kamuli district alone in 2018.

In Uganda today, boys and girls, aged 10-24 transition into adulthood through citizenship, work, marriage or parenthood. For many girls however, adolescence marks an accelerating trajectory into inequality as it exposes them to early or forced child marriages, non-consensual sex, teenage pregnancies, gender based violence, among other challenges. For instance, one in every four girls aged 15 -19 years is already a mother or pregnant with her first child (UBOS 2016). Teenage mothers are also more at risk of pregnancy related complications and disabilities before, during and after child birth. In addition, Stillbirths and newborn deaths are 50% higher among infants born to young mothers than among infants of mothers between the ages of 20 and 29.

For many of these girls, pregnancy and all the challenges they experience have little to do with informed choice. Often, it is a consequence of discrimination, rights violation, inadequate access to age appropriate and accurate sexuality education, sexual coercion, limited access to contraceptive services among other health services.

For these transitions to be successful, and for young people to fully experience their adolescence and youthfulness, they need to be empowered with health information, education, assured safety, accessible health services and opportunities for engagement.

While I appreciate the Busoga Kingdom and their partners, for the great initiative of establishing a rehabilitation shelter for the teen mothers, I think this remedy is rather curative. The kingdom needs to invest in sexual and reproductive health, for young people to have a successful journey through this critical period. The right investments will keep young people, especially girls, in school; help them start productive working lives; prepare them for their responsibilities as citizens; foster healthy relationships between men and women; and encourage young people to delay childbearing, make informed decisions about child spacing and the number of children they can take care of.

I commend the Kingdom for appreciating the contribution of the private sector in solving issues affecting young people in the region. I would like to further recommend, that the Kingdom continues to explore the multi-sectorial approach, through engaging government line ministries, duty bearers, media, civil society and gatekeepers in the communities including parents and teachers, to equally take on this responsibility.

Finally, I call upon all cultural institutions across Uganda, to appreciate the need to promote the sexual reproductive health and well being of young people, and press for the institution and implementation of supportive and responsive policies and guidelines including; the school health policy, the national adolescent and youth policy, the SRHR policy, the national sexuality education framework and the national strategy to end child marriage and teenage pregnancy. The availability of a supportive and responsive sexual reproductive health policy environment will enable Uganda to achieve the national and global aspirations that Uganda has committed to.

Kukundakwe Annah

The writer is a human rights and sexual reproductive health advocate and Program Associate at the Center for Health, Human Rights and Development (CEHURD).

Securing human rights in school health

The Ministry of Education and Sports has drafted a National School Health Policy to guide the design and implementation of interventions to improve health in school settings in Uganda over the period 2018-2023. Basing on results from a review of the latest draft of the policy, this brief highlights areas of the draft policy that the Ministry needs to improve in order to better align the policy with the human rights based approach, enhance its potential to achieve the stated objectives, and maximize its contribution to the achievement of the UN sustainable development goals.

The National School Health Policy 2018-2023 is being developed in response to not only the poor school health indicators but also to the under performance of interventions that have so far been implemented. Interventions implemented by government and other actors in recent years include Uganda school health and reading program (SHRP); school health project (SHEP); school health and nutrition program; adolescent reproductive health, guidance and counselling; school water and sanitation; sexuality education and life skills, the Presidential Initiative on AIDS Strategy for Communication to Youth (PIASCY). There have also been school health programs targeting children above five years for deworming and oral hygiene and girls of reproductive age for vaccination.

In spite of these and other interventions, school health indicators remain appalling. Adolescent pregnancies remain high; UDHS 2016 estimated that one in four adolescent girls aged 15-19 years was either pregnant or already had a child. In a national study of adolescent health risk behavior in Uganda by Ministry of Health, almost 22% of adolescents reported some form of sexual activity. This not only puts their health at risk, but also their education and future wellbeing. A report by the International Center for Research on Women (ICRW) has revealed that pregnancy is responsible for the drop-out of school of 13.1% of girls aged 14-18 years in West Nile.

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Building an SRHR Movement in Uganda: A Conversation

On 1st to 2nd July 2019, CEHURD convened a Conversation on Sexual Reproductive Health and Rights (SRHRs) Movement Building in Entebbe-Uganda. The Conversation attracted a cross range of over 45 SRHR activists, policymakers, funding partners, and other stakeholders – focusing on the need to strengthen a sexual and reproductive health and rights movement in Uganda. The meeting came up with key resolutions and actionable ways forward such as SRHR advocates building consensus on SRHR in Uganda.

The Objectives of the Conversation were:

  1. To draw a map of SRHR initiatives in Uganda, get a clear understanding of who doing what, geographical coverage, issues covered and the constituency;
  2. To analyse how resistance and backlash to SHRH institutional change efforts manifest in different contexts, on different issues, and at three different levels (macro, meso, and micro) and the institutional individual levels, and the forces that are advancing or challenging them;
  3. To understand how SHRH activists and social justice actors are currently addressing resistance and backlash and enable collective strategizing on responses including what kinds of collaborations and partnerships are needed to be effective to lobby and engage;
  4. To discuss new ways of building new relationships between frontline activists/women human rights defenders and academics, institutional change practitioners that enable the re-crafting of strategies to respond to the real-time opportunities and threats to SRHR; and
  5. To determine how we can develop and communicate new ways of working, conceptualize tools, strategies, and actions to a broader audience within the country and around the region.

The conversation employed a cross-range of participatory methodologies to allow for deeper reflection, learning and action planning. Key among these are: debates, plenary discussions, learning and review of strategies by use of case studies of other movements (the Jesus Movement, LGBTIQA and Sex Work Movements), group input, reading, timeline exercise on the SRHR Movement in Uganda and informal networking.