The right to life is enhanced under articles 31 and 34, which provide for the right to family, social care and support. Given a liberal construction, these articles mean that patients have the right to be surrounded by their family, friends and the community whom they need in such circumstances.
In addition, article 28 provides for access to justice, which means that every patient has a right to access legal assistance, fair treatment and quality health care services. Every patient who does not enjoy this right has the right to seek legal intervention if their rights are violated. Unfortunately, this is not common practice in Uganda as a result of ignorance among patients and their families of such rights.
According to Kenya Hospices and Palliative Care Association, there are four basic principles which govern the enjoyment of palliative care; availability, accessibility, acceptability and good quality. Under availability, palliative care services and goods such as opioids should be available including sufficient health personnel of adequate skill.
Accessibility means palliative care services should be physically accessible and economically affordable. This also includes access to any and all information relating to the patient. This right of access to information also includes the right to informed consent on diagnosis and verbal explanation about their condition.
Patients may not be coerced to disclose any information about themselves that they are not comfortable disclosing. Any information that patients share with the medical team is also confidential.
In addition, under acceptability, palliative care services offered should be ethically, culturally and religiously appropriate in order for the different communities to welcome the idea. Lastly, all the goods and services provided should be of good quality.
Ethically, palliative care services are governed by four major ethical principles according to Uganda’s ministry of Health; respect for autonomy, beneficence, non-maleficence and justice. Respect for autonomy acknowledges each patient’s right to self-determination without prejudice.
Beneficence, on the other hand, means acting in the best interests of the patient. However, this must be distinguished from paternalism that is the “doctor knows best” belief.
Non-maleficence means not being malicious. One ought not to inflict harm deliberately. For instance, offering information in an insensitive way, providing unwanted sedation, or withholding or withdrawing treatment without consent.
Last but not least, justice. This entails fairness in the application of palliative care. Palliative care services should not be based on wealth, class, creed or colour of skin but quality care in order to maintain the dignity of the patient, empowerment of the patient’s family to manage their own situation and promotion of respect, equity and accountability to patients.
In order to ensure these, primary care and specialist providers and other health care professionals should adhere to professional and organizational codes of practice and ethics. It is important to note that palliative care involves certain legal issues and health care workers are, therefore, encouraged to assess the legal needs of their patients and offer the necessary support required.
The main legal issues experienced generally include succession planning particularly writing a will and property inheritance, appointment of someone to act on behalf of one who is incapacitated through illness also known as powers of attorney, following up on social security benefits that are due to the patient in their demise, and the custody of their children if any.
In Uganda, the government has not only responded positively to palliative care under the 1995 Constitution but has also included it in the mission statement for Uganda’s National Health Policy.
Through the ministry of Health, the government of Uganda has also made oral morphine the most abundant analgesic opiate found in opium and a potent pain reliever available at no cost for patients experiencing moderate-to-severe pain as a pain relief in advanced cancers with terminal cancer pain and as a pain relief after surgeries.
The government can further work hand in hand with mainstream organizations in order to create awareness of the legal aspects of palliative care as a fundamental human right.
The author is the legal and regulatory advisor at Airtel Uganda.
