Paralegals and health care workers from various parts of the country convened in Nairobi for a training as paralegals to offer legal support to patients and family members having problems associated with life threatening illness.
The three day training for paralegal persons aimed at equipping participants with knowledge and give them an opportunity to respond to legal needs, guaranteeing those in need of palliative care that they have access to legal services and support and encourage them to continue interacting with the legal community.
Kenya Hospices and Palliative Care Association (KEHPCA) in collaboration with hospices, palliative care doctors, lawyers and human rights organizations has come up to address the legal issues which include inheritance, making medical decisions, will writing among others, faced by majority of patients suffering from life limiting illnesses in Kenya.
Opening the seminar, Ann Gathumbi, a programs manager with Open Society Initiative for East Africa (OSIEA) stressed the importance of offering comprehensive palliative care to patients including addressing their legal concerns which can only happen if there are persons trained with the right skills.
KEHPCA’s Executive Director Dr Zipporah Ali, pointed out that health care service providers abandon patients by sending them home often without medication when ‘there is nothing more to do for them’ in hospitals.
“This is a time when patients have critical clinical, psychosocial and spiritual problems and KEHPCA has been involved in advocacy on palliative care and pain relief as a human right as well as empowering patients and health care workers in various parts of the country.” Dr Ali said.
According to Dr Ali, the continued advocacy has achieved the following;
- Palliative care has been included in the Kenya Health Law and Patient Charter
- Training hospice and palliative care workers on legal aspects of palliative care
- Continued training of lawyers/paralegals on palliative care
- Production of information leaflets for patients, families and health care professionals which have been very helpful as per reports from hospices using them
Some of the challenges highlighted by Dr Ali during the session include lack of enough trained health care professionals in palliative care in Kenya hence need for continued advocacy to change attitudes on use of opioids for pain control.
She said that limited access to essential medicines, space for palliative care in hospitals, policies to address palliative care and funding remain challenges that the national association and other stakeholders are struggling to overcome.
Kenya Legal and Ethical Issues Network (KELIN)’s Program officer M/s. Melba Katindi outlined the legal instruments on the rights of the child as the Constitution of Kenya (2010), Convention on the Rights of the Child (1989), African Charter on the Rights and Welfare of the Child and the Children’s Act (2001)
“The value of play, both as a right and a distractive therapy, help children cope with pain and discomfort.” She said.
She further identified interventions that paralegals and health care workers can offer in a child with palliative care needs as follows;
- Recognize and relieve pain, discomfort and suffering in children of all ages
- Ensure early diagnosis and treatment of children for chronic, life-limiting illnesses and conditions
- Identify children at risk of harm and in need of protection from violence, abuse, neglect, exploitation, poverty, stigma
Belice Odamna from KELIN, and an advocate of the high court, addressed the issues with the state having obligations to apply human rights in palliative care, just like in other aspects where the government has a role to respect, protect, fulfill and promote the rights of all citizens.
In her discussion on making a will, she identified the following as the advantages;
- It enables the testator to maintain control over property. This is especially important for a person with a spouse and children.
- It avoids rules of intestacy where the shares of the estate which the next of kin receive are arbitrary.
- It enables the estate to be well administered since the testator personally appoints an executor whom he trusts and believes to be capable of managing the estate
- It allows for immediate administration of the estate following death unlike the position under intestacy where letters of administration have to be granted before one is authorized to deal with the estate. The grant of letters takes time which may expose dependants to inconvenience and hardship.
- Full disclosure of the deceased’s property is enabled by a will, without which undisclosed property could be lost if the family never knew of its existence.
- It gives the family peace of mind and avoids disputes over the sharing of the deceased’s property.
- It benefits persons outside the immediate family circle.
- It enables a parent who has minor children to appoint guardians to take parental responsibility for the children should he/she die while the children are minors.
KEHPCA’s Education and Research Officer Dr. Asaph Kinyanjui defined ethical dilemmas in palliative care as situations arising when equally compelling ethical reasons both for and against a particular course of action are recognized and a decision must be made.
A participant from Kimbilio Hospice was in pain discussing how he was recently caught up in a situation where two patients required oxygen and yet only one machine was working.
The training was a success characterized with knowledge sharing, informative discussions and provided a great opportunity for networking between the participants and advocates.
KELIN coordinated an interactive session on the last day between five pro bono lawyers who offered their time to listen and offer legal support to participants with cases that needed advice and legal representation in court.
KEHPCA and KELIN look forward to greater interactions where paralegals and pro bono lawyers would offer support to many patients in palliative care as a way forward in this project.