Palliative care is increasingly a topic of discussion and concern in the country and also globally but many people are not aware of what it entails, when it is needed and how to access it. Palliative care is recognised as a basic human right and an important component of quality healthcare and is not only for the very last days of a patient’s life.
Depending on their circumstances, a person may access palliative care for years, months, weeks or days. Palliative care is also for people at any age who are experiencing severe or complex symptoms due to any life-limiting, or serious illness. The diseases for which palliative care is needed include, but are not limited to: cancer, dementia, advanced lung, heart, kidney or liver disease, stroke and other neurological diseases, muscular dystrophy ,HIV/AIDs and other degenerative, or deteriorating conditions related to aging.
The aim of palliative care is to improve and maintain quality of life for patients so as to enable them to live as actively as possible as they go through the experience of these illnesses. As such the patient and the family form the core unit of focus in palliative care. To provide quality palliative care, the following are essential:
•Timely, quality patient and family communication and updates. This is key to having the patient know their diagnosis, likely disease trajectory and the assistance they can get from their teams. This also enables the patient and family make crucial decisions regarding the type and level of care that they wish to receive.
More often, palliative care teams hold family conferences for this purpose. The importance of these interactions cannot be ignored as commonly, the patient or families are not aware of what to expect after disease cure is ruled out. Although the patient should be the primary recipient of information regarding their disease, the family knowledge goes a long way in enhancing shared decision making and having clear goals of any care being provided.
• Controlling symptoms such as pain. Experiencing pain and other symptoms when going through a life-limiting illness is very distressing not only to the patient but also to the family. Pain is the most feared reported symptom.
In palliative care, individualistic pain assessment and treatment is offered encompassing multidisciplinary approach to this symptom. Patient and family education on the cause, treatment being given and the options available is key to effective and efficient pain treatment.
• Planning for the future is an important concept that all human beings face. Palliative care allows for planning to ensure the patient and their family experience the best quality of life and support possible throughout the illness trajectory. These plans could entail where the patient wants to be taken care of, what level of care they would wish given to them, who they would wish to make decisions for them when they are not capable of doing so, who is the next of kin etc.
Advance care planning therefore forms an important component of quality palliative care. With these in place, patient’s preferences are clear, goals of care are explicit and conflicts regarding decision making are avoided.
• Ensuring confidentiality, privacy and as much as possible independence of the patient. There is no time in a patient’s life that these three are threatened than when faced with a life-limiting illness. As everyone who knows the patient struggles “to do the best” for them, lots of information regarding the patient may be shared without proper consent or knowledge of the patient/family.
In palliative care, protecting these core tenets around a patient are considered part and parcel of the team’s responsibility. Engaging the patient and the family especially the next of kin significantly enables the teams to meet this core duty.
• Emotional, spiritual and social wellbeing. The holistic approach of care espoused in palliative care is only met if these facets of a human being are taken care of. In finding meaning in what they are going through, patients and families are able to cope and accommodate the new challenge to their interrelationships and social setting.
Family, cultural and inter-relation dynamics play a significant role in determining how to navigate through these aspects. The emotional distress that patients and families experience when facing life-limiting illnesses call for quality emotional support. This needs to be combined with proper caring for other carers.
Palliative care can be provided at the patient’s home, at a hospital, a hospice or a palliative care unit. As the attention in palliative care is the patient and the family, home settings are becoming more and more preferred for provision of palliative care. Patients and families are accepting this as site of care at this crucial point in their lives.
The advantages of this cannot be overstated; home is the normal environment of the patient, the family is able to spend more time with the patient thus allowing the crucial role families play to proceed, 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 compared to a hospital settings. Patients usually report that being taken care of at home is the best decision they ever made on their healthcare.
Patients and families need to be made aware of the availability of palliative care services and how to access them. It is the duty of the clinicians to do so and to give them full information regarding their illnesses and the available options so as to make informed decisions including opting for palliative care only without aggressive treatments. It is also an obligation on all of us to make palliative care available, accessible and affordable- as a basic human right.
By Dr. John Weru, Consultant in Palliative Medicine, Aga Khan University Hospital, Nairobi