When Ann Wachira and Peninah Njagi, both at 50, of Embu-Mbeere Hospice, located in Embu county, Kenya, joined palliative care about five years ago, they did not know that spending time with the dying and their families would turn out to be such a fulfilling affair in their lives. Recently Ann attended a burial ceremony of one her clients and she was deeply impressed at how the deceased family was grateful to her for the care and counseling she had given the deceased and the family in preparing them for the impending death so much so that she was invited to speak at the burial ceremony an opportunity she took to explain her work.
“The reason why we offer palliative care is that it allows the persons diagnosed with life limiting illnesses to die with dignity,” Ann says “Dying with dignity means they are given better care by family members in their homes unlike the hospital set up where the hospital staff may give more attention to those with illnesses that are curable leading to those with the life limiting illnesses feeling neglected. It also empowers the family of the dying by giving them an opportunity to be with their loved ones during last moments of life and prepares the family to the eventuality of death.”
According to the National Palliative Care Guidelines of 2013, palliative care is an “approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illnesses, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” This type of care is normally given to persons suffering from cancer, but can be extended to persons with diseases like diabetes, chronic lung diseases and other conditions that are incurable.
“Palliative care is an ongoing process that begins when a person is diagnosed with a life limiting illness, through treatment and until the terminal phase. It helps these persons and their families understand implications of the illness, expectations of treatment and acknowledge death. This allows them to own the illness, optimize care at every phase and the grieving process after death is less complicated since they were well prepared at what would happen,” Ann says.
“By use of support groups and sharing of stories, it gives the patient an opportunity to interact with those who have battled with cancer for longer. That has a profound effect of giving hope and encouragement to the newly diagnosed and their relatives allowing them to recover psychologically and live more fulfilling lives,” Peninah says.
“The end-of-life care reduces physical pain when sick persons are given pain killer medications. Psychological and spiritual suffering is ameliorated by offering counseling to the persons afflicted by the illnesses and their families. It also allows the family members to know how to tackle the very end phase of life,” Ann says.
Recently there have been numerous stories of wealthy businessmen’s families being engaged in unending court battles after the death of their patron due to lack of proper wealth inheritance mechanisms. Refusal to seek professional advice especially when one is the registered owner of wealth in the family places the family members at discord especially in regard to inheritance issues. Ann says, “Will writing is an integral part of end-of-life care. It has helped families plan what would happen once a person dies reducing conflicts and encouraging disclosure. It also prepares patients’ families in bereavement, burial and encourages them in the terminal phase to write a memory book.”
“A while ago, we used to give the sick persons supplies such as breast prostheses for those with breast cancer and have had their breasts removed and currently we give colostomy bags to those with colostomies.” says Peninah. A colostomy is a deviation of the large intestine to an opening on the abdomen which is created when one has a tumor of large intestine obstructing fecal matter from passing through the anus. Such kind of assistance reduces overall burden of illness especially to those who are not financially capable of seeking treatments.
Despite the increasing role of palliative care to the communities compounded by increasing incidence of cancers and other life limiting illnesses, delivering these services continue to face challenges. There lacks comprehensive national policies which limits the role of health workers in delivering the services. This also means that very little funding is allocated to palliative care limiting the functionality of existing teams.
Kenya lacks adequate resources and infrastructure to manage progressive illnesses such as cancers. There are very few cancer specialists in the country and patients have to travel from very far remote regions to access cancer specialist services to optimize their treatments. Services such as radiotherapy are also very limited and majority of patients get discouraged when they are given a booking of more than a year to undertake their treatment. Such systems’ failure increases stress and diminishes hope of those living with terminal illnesses. The high level of poverty also limits access to treatment for many people especially those living in rural areas. Consequently many persons and their relatives suffer silently in their home.
Cultural factors and taboos also interfere with the delivery of services. In this particular hospice seventy-eight percent of those seeking services are women. That does not mean that men are not suffering. It means that they are simply not willing to disclose their illnesses. “Failure to seek help brings forth unprecedented suffering and the victims and their families bears unnecessary struggles that probably a solution exists somewhere,” Ann says.
Offering end-of-life care at home has been wrongly associated with death. “In one community, when people would see our vehicle, they would start saying that the vehicle of death has arrived. This had a negative impact to the delivery of services leading the sick and their family to decline our services,” says Peninah.
Despite these challenges, Ann and Peninah, who are both nurses by profession, believe that the services have helped tens of people whom they have worked with navigate this challenging phase of life in a stronger and fulfilling manner. They themselves have intense fulfillment from their work especially when they see a sick person and their families relieved of pain and suffering.