Palliative Care: Adding life to days

While Medical science has significantly increased our life expectancy and made many diseases treatable, it has made our expectations soar to unreasonabe heights and dimished our capacity to accept death due to diseases that defy current treatment. Widespread cancer, dementia and advanced chronic diseases of the heart, lungs or liver are some examples that cause significant pain and suffering, progress relentlessly and render even the relatives helpless and frustrated.

Palliative Medicine (PM) may sound a paradox in modern times, as “it aims to add life or quality to the remaining days, in terminally ill patients”, says Dr Mhoira Leng, a British doctor presently working in Uganda, and a pioneer in this subspeciality, who was in Lucknow recently. “Providing relief of the  distressing and dehumanising pain to patients with terminal cancer can be one of the greatest boons of medical science that is unfortunately not often adequately utilized”, she added.

Experts in PM have to tackle several problems and at various stages. Their work often starts with breaking the bad news and counseling such patients and relatives, who are often in a state of denial or unrealistic expectation. Relatives of most cancer patients in India do not wish the diagnosis to be disclosed to the patient. As the disease progresses and hospital visits get more frequent, the patient usually starts suspecting the diagnosis, but finds himself surrounded by bluffing relatives, with whom he can no longer discuss with frankness his problems, preferences and last wishes. He often feels lonely and emotionally isolated in his last days.

At stake is the “care” that such patients receive. To most relatives (read well earning sons often staying elsewhere), it means taking the ailing parent from one hospital to another, often to another city, putting him through a battery of expensive re-tests, and hooking him on to machines in ICU setups, and keeping him ignorant of his diagnosis and fate. While all this provide some satisfaction to the relatives that they have done all that they possibly could, and mitigates their sense of guilt, it often adds to the patients misery, pain and suffering. Studies have shown that what he needs most is his own bed, his familiar home, loving relatives, and palliation of hid distressing symptoms that make his last phase of life so agonizing.

Relief of pain is crucial to caring for such patients. A recent study has shown that specialists in tertiary care hospitals are often more obsessed with performing one test after another, and paying much less importance to relieving pain. The recently started Pain Clinic and the Palliative Medicine services at SGPGI hope to change that. After assessing the severity of pain, therapy is tailored to the patient’s requirement. Apart from providing relief to the distressed patient and making him comfortable, it often sooths the nerves of bewildered relatives. The major challenge is to take such therapy to the patient’s bedside at home.

Jade Goody, the British TV star, died recently of advanced cervical cancer. Rather than in an alien atmosphere of a hospital surrounded by machines, she lived her last days with dignity at home, and that is where she preferred to die.