Add life to days not just days to life

IN PALLIATIVE CARE, we never say “there is nothing we can do”. It’s care beyond cure, a concept of humanity and a backbone of modern medicine. Patients with life-limiting illnesses have so many problems that health workers feel always overwhelmed and powerless to help. It’s a multidisciplinary team concept focus to care not on disease but for the person; behind the disease there is a person who needs help and feels vulnerable. Health workers tend to focus on physical problems – disease and treatment. But palliative care recognises that people are much more than just bodies – our minds, our spirits and our emotions are part of who we are, the families and communities to which we belong. So the problems facing a sick person and their family are not just physical; they may be psychological, social and spiritual issues, which are just as important as the illness itself. Sometimes problems in one area may worsen others, e.g. pain is often worse when people are anxious or depressed. It is only when we address all these areas that we are helping the whole person. This is called holistic care. The World Health Organisation in 2002 defined palliative care as “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. Sometimes it’s difficult for health providers to explain to families the reality of incurable disease but it’s necessary to help them by discussing the way forward of management. In palliative we are focusing on relieving pain and control symptoms, we are aiming to put the patient in comfortable situation, not necessarily to cure but to give a quality of life focusing on all the aspects of humanity – of the patients and support families which need a very good orientation during this difficult time. At the time when someone first finds out that their disease cannot be cured, they may be active, still busy work, and maybe on treatment, such as ARVs or chemotherapy. Palliative care should begin alongside these other treatments, helping with difficult symptoms and side-effects, and giving emotional and spiritual support to the patient and their family. As time goes by, their needs will change and they may need more symptom control. Other treatments may be stopped if they are no longer helping and holistic palliative care is what will help the most. In palliative care, we recognise a limited option of curable treatment for our patients but are sure that to manage other aspects we will have an opportunity to improve their quality of life during the rest of their days. Some treatment may prolong life, which is helpful for families to spend more days with their loved ones but what is important is not the number of days we are going to add to their life – to manage a person with terminal illness poses psychological, social and financial burden for family – but the quality of life in their final days. As palliative care has become a human right, we need to give the best quality of life to our patients, especially those who are facing terminal illness and their families. “Freedom from pain should be seen as a right of every cancer patient and access to pain therapy as a measure of respect for this right” concluded the WHO Expert Committee on Cancer Pain Relief and Active Support Care. The writer is a medical director at Kibagabaga Hospital in Kigali.