In 2002 AIC Kijabe Hospital began providing specialized palliative care to patients with chronic or life-ending illnesses with funds donated from interested individuals. Over the past decade the demand for palliative services has continued to increase and the hospital has responded by increasing its palliative staff and the scope of its services. The Palliative Care Unit (PCU) has now grown to include five full-time nurses (3 with formal training in palliative care), one part-time counselor, and one part-time medical adviser. It provides inpatient consultations, outpatient care, and home-based care to more than 600 patients. An education and advocacy program has also reached more than 120 health professionals and approximately 150 community volunteers. Late in 2012 Kijabe Hospital opened its new Palliative Care Building, designed to house a full spectrum of palliative care activities and functions in a spacious and comfortable environment.
Palliative clinical services provided at Kijabe Hospital now include inpatient consultations and clinical management, outpatient management, and home visits to patients within 50 km of the hospital who are bed-ridden or have become unable to travel to the hospital. Patients are assessed and resupplied with their medications, wound care is provided, nutritional concerns are addressed, and caregivers are further coached in the provision of home care. Spiritual care and professional counselling services are also provided to any patient who needs them.
Additional activities now also include referral services to other palliative care units for patients from outside our catchment area; referrals for specialist oncology services for those who can afford them; community outreach events for cancer screenings and awareness raising; and fund raising to help provide medications and other hospital services to impoverished patients who cannot afford the palliative services they need.
Training is another important activity of the PCU: training of medical and nursing staff and allied health personnel in palliative services awareness, palliative care concepts, and effective pain management; training of family members to be home-based caregivers for their sick loved ones; and training of pastors, community leaders and volunteers to create awareness of palliative care services and the importance of cancer prevention and early detection.
Beyond this, the PCU also provides day care services twice per month, where patients and their caregivers come together in a supportive environment, share freely about their concerns and receive health messages and focused group counselling on relevant topics. Finally, bereavement counselling is provided on a monthly basis, or more frequently if needed, for families that have lost loved ones.
AIC Kijabe Hospital has now developed plans to complement the Palliative Care services in the near future with basic pediatric oncology services for pediatric patients with highly curable cancers. Plans for developing similar basic adult oncology services are planned for the medium term future. Inpatient hospice facilities for end-of-life care and respite care are also planned for the medium term future.
What is Palliative Care?
The most widely adopted definition of palliative care is that of the World Health Organization (WHO), which states that palliative care is:
“…an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, 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. (Http:// www.who.int/cancer/palliative/definition/en/)
This definition incorporates several important aspects of palliative care:
• Its primary concern is quality of life, not quantity of life.
• Its focus is on symptom anticipation and alleviation, not on the specific diagnosis except insofar as the diagnosis helps to predict symptoms or influence symptom behavior.
• It includes important relationships such as family and friends in its sphere of vision.
• Far from the “benign neglect” assumed by those unfamiliar with the philosophy of palliative care, it requires close attention to and involvement with the client.
• It is holistic in scope, recognizing the importance of addressing not just physical needs but also the psychological, social and spiritual needs of the patient.
Palliative care affirms life, regards dying as a normal process, and seeks to assist patients and their families through the remainder of the patient’s illness. It seeks neither to hasten nor to postpone death, but rather to relieve pain and suffering, to support patients to live as active and engaged a life as possible until death, and to support their families throughout the patient’s illness and through their subsequent bereavement.
Many patients have life-limiting illnesses that are not curable: advanced cancers for instance. People with these kinds of illnesses fear being abandoned by their medical caregivers. They fear being told by their doctor, “There is nothing more we can do. Go home and prepare to die.”
Fortunately, at Kijabe Hospital such fears are unnecessary. We understand that even if an illness is incurable it can still be treated and managed in order to improve and sustain the welfare of the patient. This is Palliative Care. In contrast to curative care, which has the goal of curing disease and thereby extending life, the goal of palliative care is to relieve suffering, to maximize function, and to sustain quality interactions with family and friends for as long as possible. Instead of “adding days to life” we say the goal of palliative care is to “add life to days.”
Palliative medicine utilizes a multidisciplinary approach to patient care, relying on input from physicians, nurses, chaplains, social workers, psychologists, and other allied health professionals in formulating a plan of care to relieve suffering in all areas of a patient’s life. This multidisciplinary approach allows the palliative care team to address physical, emotional, spiritual, and social concerns that arise with advanced illness.
The World Health Organization has highlighted the need for the development of palliative care services in sub-Saharan Africa for the increasing number of cancer and chronic disease patients with end-stage illness. In fact, the WHO has identified access to palliative care as a human right that is seriously lacking in most developing countries.
“The majority of those suffering unrelieved pain are in low- and middle-income countries where there is an increasing burden of chronic diseases such as cancer and HIV/AIDS. Limited health resources should not be allowed to deny sick people and their families the dignity of access to pain relief and palliative care, which are integral to the right to enjoy good health.”
(Dr. Catherine Le Galès-Camus, WHO Assistant Director-General for Non-communicable Diseases and Mental Health.)