Dr. Zipporah Ali is The Chief Executive Director of Kenya Hospices and Palliative Care Association (KEHPCA), which represents and supports hospices and palliative care providers in Kenya. KEHPCA has been involved with the Ministry of Health of Kenya in developing the first National Cancer Control Strategy as well as the first National Guidelines for Cancer Management in Kenya.
“If a cure is not found quickly, the impact of this disease will have disastrous results to all, rich and poor, young and old, sick and well.” (Palliative Care Nurse, Kenya).
Countries across the world are all struggling with the COVID-19 pandemic. These are extremely challenging times for all, especially those in leadership and those working in health care. No doubt this is a situation that cuts across so many sectors within a country. Leaders are struggling to make the right decisions with very little knowledge of a new deadly pandemic. Healthcare workers and other frontline workers are doing the best they can with minimal or no supplies of Personal Protective Equipment (PPE), inadequate knowledge of COVID-19 and poor infrastructure. This is felt even more in countries with weak/broken healthcare systems.
Amid all these challenges, the need for a holistic approach of care for those affected with the virus is important. Thus, those infected, their families, and people living with pre-existing conditions and older people will need comprehensive care that not only addresses physical symptoms of the disease for those with the virus but also psychosocial and spiritual support to the sick, their families, the healthcare workers, and volunteers as well. In fact, since this is affecting everyone, there is a need for psychosocial, spiritual, and grief support for all humankind. We are all, in one way or another, affected.
“We need urgent supplies of protective gear for palliative staff handling COVID-19 patients. Urgent training of palliative care staff in handling COVID-19 patients.” (Hospice Nurse, Kenya).
Fears and concerns highlighted in the hospice and palliative care survey
Kenya Hospices and Palliative Care Association (KEHPCA) conducted a survey of 16 hospices and palliative care units in public, mission, and private hospitals across the country. From the survey, palliative care clinicians have genuine concerns both for themselves and for their clients. These are real fears and concerns that are hindering them from providing care for those in need. Fears of: getting infected; infecting their clients because of lack of appropriate personal protective equipment; not having enough information on COVID-19, among others.
Patients too have fears and concerns for themselves and their loved ones. They are afraid that they may not receive the care they need for their pre-existing conditions; they may not have access to medications, may be affected with COVID-19, that they may spread it to their loved ones, and that they could die alone with no family member with them. Cancer patients on chemotherapy and/or radiotherapy are worried that they will not complete their treatment and that all funds will focus on COVID-19 as a priority.
They have financial fears as well. These include: being able to access or afford their medications; being a burden to their families; breadwinners in the family not being able to earn due to isolation and curfews.
How are we, as the national palliative care organisation, responding to these fears and concerns?
We have strongly advocated for palliative care to be integrated into the COVID-19 response through providing palliative care guidelines for COVID-19 management; working with our Ministry of Health/Mental Health Department to engage palliative care clinicians in providing psychosocial support to those affected (patients, families and healthcare workers). This also includes the rehabilitation of those who have recovered and helping them back into their community by addressing stigma-related issues.
We are also providing: credible information on COVID-19 (brochures, leaflets, posters, online training), PPE to enable palliative care workers to see patients and/or their family members through support by our international partners. We are truly grateful to the True Colours Trust, Global Partners in Care, and Open Society Foundations for the support they have given us to enable us to support hospices and palliative care units in public and mission hospitals. We are encouraging the use of modern technology for communication with patients and families and providing airtime and smartphones to hospices to enable communication, including video communication if need be. We are also working to form systems for psychosocial support to patients/families, as well as palliative care clinicians and volunteers, and developing bereavement support programmes with our other partners like Faraja Cancer Support.