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16 Jan 2022

What do you do as a clinician when a patient is suffering from a serious illness with a high risk of mortality, negatively affecting the daily routine and well-being of the patient, and also is causing extreme stress to the caregivers. That is when palliative care comes into the picture. It focuses on symptoms that the patient is facing, giving mental and emotional support to the patient and caregivers, and through clear communication ensuring that care at the end of the patient’s life aligns with their preferences, values, and goals.

The most common symptoms that patients experience are nausea, vomiting, headache, pain, constipation, delirium, agitation, depression, anxiety, apart from existential distress. The goal is to deal with every symptom in the best possible way so that the well-being of the patient can be improved on a daily basis. A very interesting concept of “double effect” comes into play here. According to this principle, sometimes the primary intention of giving palliative care to relieve the patient of distressing symptoms has the potential to hasten the death of the patient.

The most important bit in palliative care is communication with the patient and caregivers. Once the clinician is sure of the fact that with medical intervention the life of the patient cannot be reasonably prolonged, the clinician must have a proper detailed conversation with everyone involved. With due concern and empathy, the clinician must inform them of the prognosis of the patient and what they can expect in the coming days based on the patient’s condition at that point of time, but also give them the confidence that as clinicians they would give all the support, care, and treatment needed till the last breath of the patient. In this process, it is important for the clinicians to realize that death is not something they have to fight against and they should not let guilt into themselves if they lose patient despite putting in their best honest attempt. The only thing the clinician needs to take care of is relieving symptoms, giving support and care so that the patient makes most of their life.

Clinicians have to follow a 3 step approach. First, treat them for the symptoms that they are facing and also give care and support for the psychological, social, and spiritual distress that the patient is facing. Second, they have to act as catalysts of hope. Even when the situation seems tough and death inevitable, they need to give patients and families the hope that things can definitely change for good and not let them give up. The third is to relieve the patient of the fear of abandonment in the last days of life. Constant reassurance that care and treatment would be given and the best possible efforts are being taken has to be provided. Instead of making the patient focus on death, helping them take every day as it comes and giving them the energy to make every day worthwhile is what the clinicians need to do with the utmost care, empathy, and patience. Care on these lines needs to be provided to the caregivers and family too. As clinicians, we also need to take care of the advance directives that the patient has given stating on what lines care and treatment needs to be given at the end stages of chronic illness when he is not capable of directly communicating. These directives are in line with patients' goals, preferences, and values and such autonomy of well-informed competent individuals should be respected.

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Azra Naseem

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