When a patient of any age is experiencing severe or complex symptoms due to a serious or limiting illness, he or she needs palliative care to relieve the pains.
Patients with cancer, dementia and other degenerative diseases, advanced lung, heart, kidney or liver disease, stroke and other neurological diseases, muscular dystrophy, HIV/Aids or deteriorating conditions, need palliative care for days, weeks, months or even years.
The aim of palliative care is to improve and maintain quality of life, so that patients can live as actively as possible during illness.
Palliative care is a basic human right and an important component of quality healthcare that should not be saved for the very last days of a patient’s life. It should be available, accessible and affordable.
Clinicians should tell patients and their families about the availability of palliative services and how to access them. They should provide full information on the illness and available options, so that patients can make informed decisions such as opting for palliative care only, without aggressive treatments. The following aspects are essential for the provision of quality care:
Timely communication and updates: The patient and his family need to know the diagnosis, likely disease trajectory and the assistance they can get from the healthcare team. This helps them make crucial decisions regarding the type and level of care they wish to receive. For this reason, family conferences are important. Commonly, patients and their families do not know what to expect after cure is ruled out. Although the patient should be the primary recipient of information regarding their health, involving the family enhances shared decision-making and ensures clear goals on the care provided.
Pain management: Pain is the symptom patients fear most and would like it put under control to minimise distress. Patients and their families should be advised on the cause of pain and the options available for effective and efficient pain management.
Planning for the future: Advance care planning ensures the patient experiences the best quality of life and support throughout illness. These plans could entail where the patient wants to be taken care of, level of care they would like, who they want to make decisions for them when they are not capable of doing so, and the next of kin, among others. With these in place, the patient’s preferences are clear, goals of care are explicit and conflicts on decision-making are avoided.
Confidentiality and independence: A patient’s confidentiality, privacy and independence are threatened when they are limited by illness. As everyone who knows the patient struggles “to do the best” for them, a lot of information regarding the patient may be shared without proper consent or knowledge of the patient or his family. The healthcare team should protect these core tenets and engage the patient and family (especially the next of kin) to ensure they are respected.
Holistic care means taking care of the patient’s emotional, spiritual and social wellbeing. In finding meaning in what they are going through, patients and families are able to cope and accommodate the challenge.
Family, cultural and inter-relation dynamics play a significant role in determining how to navigate this challenge. The emotional distress that patients and families experience when facing life-limiting illnesses calls for quality emotional support, combined with proper care for other carers.
Place of care: Palliative care can be provided at the patient’s home, at a hospital, a hospice or palliative care unit, but homes are becoming the preferred location for palliative care. The advantages of this cannot be overstated; home is the normal environment of the patient, and the family is able to spend more time with the patient thus allowing the crucial role families play. Moreover, more independence is assured to the patient, more attention is paid to the patient rather than to the disease, and the cost of care at home is lower than in hospital. This is why patients usually report that being taken care of at home is the best decision they ever made.
Dr Weru is a consultant in palliative medicine at the Aga Khan University Hospital, Nairobi