What is Palliative care ? Why it is important
The WHO defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem 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.” It has recognised palliative care as an integral and essential part of comprehensive care for cancer, HIV and other health conditions. It has urged countries to take action in three areas — policy making, education and drug availability.
Most of us still tend to confuse palliative care with tender loving care for someone about to die. This is the reason why we think palliative care is the same as hospice care. But the two are very different concepts. A hospice is a home for the terminally ill in the final stages. Palliative care is about ensuring better quality of life through pain and symptom management and through addressing various emotional, social and spiritual issues.
Palliative care does require passion and commitment. But it is as much a specialised science as any other branch of medicine. The developed world has accepted this and already put it into practice.
For long, it has been our tradition to practise palliative care at home. We believe in the religious care of the dying according to age-old rituals and customs. There was no fear of dying at home because our family ties and bonds were very strong and the family always rallied round to help us tide through difficult situations.
However, times have changed drastically and the “nuclear family” is here to stay. More often than not death happens in hospitals and it is considered as a “failure” of medicine. An aggressive approach towards life preservation with little consideration for the financial and emotional impact on the patient and the family leaves very little scope for palliative care. Perhaps, depending on the diagnosis and the prognosis, it is high time that patients and families started asking for palliative care, possibly along with curative treatment to make things easier for all, especially the patient. Already, some physicians have started recommending palliative care, based on their assessment of the patient and also the overall condition of the family.
Palliative Care respects the fact that every human being is made up of body, mind and soul, and should be treated as a ‘whole person' when disease strikes, as it is not just the disease but also the distress produced by the disease that he (and the family) invariably suffers from.
Palliative Medicine is a specialty which involves the active treatment of patients undergoing chronic and life limiting illnesses. Palliative care is not just terminal care. The main focus is on treating the distressing symptoms caused by these diseases even during treatment of the disease (by the respective specialists). It is much more needed towards the advanced stage. Palliative care also addresses the emotional, psychological, social and spiritual issues which are commonly seen in these patients. The sole aim of palliative medicine is to improve quality of life.
Acknowledging this ‘whole person' concept in treating any patient, the World Health Organisation declared Pain Relief and Palliative Care as the fourth dimension of ‘Total Cancer Care' along with the curative options of surgery, radiotherapy and chemotherapy.
So when can palliative care start? The answer is simple – from the time suffering starts, which could be right from the time the diagnosis of a disease like cancer is made!
Every patient diagnosed to have cancer may not need palliative care; but the care should be available to all those who need it any time during the course of the illness. At the time of diagnosis: How does one feel when a cancer diagnosis is made even if it is curable? The very mention of the word ‘cancer' causes fear and anxiety. With advanced literacy and access to information, even if the treating doctor has explained, people have more and more doubts and uncertainties — “Can it really be cured?”, “Will it come back?”, “Will I suffer in pain?”, “Why did God do this to me?” — Classic examples of emotional, psychological and spiritual pain, besides the physical pain. Palliative medicine addresses these issues which help them cope with the diagnosis and move on.
Early control of pain and other physical problems can help many to get back to their normal life sooner. At a time when ‘Freedom from pain is a human right', it is heart-rending to see patients who have suffered unnecessarily for so long that it is common for them to say, “If you can't take away the pain please just kill me!” They never say this once the pain is taken away!
Pain can also occur during cancer treatment and often patients do not want to continue treatment for this reason. Effective medicine and reassurance of symptom relief help them to resume therapy. Unfounded fears of addiction and misconceptions about pain killers and reserving them for the terminal stage deny the patients the opportunity to lead a pain-free life and improved chances of survival.
Every patient has the right to know about his illness (patient autonomy is an important aspect of medical ethics) but the way to tell them is important – neither telling the diagnosis abruptly nor hiding the truth, but gently breaking the news on a need to know basis. Early and effective communication helps both patient and family ‘digest' and accept the diagnosis and gives them a direction to move in.
Palliative medicine is not meant only for patients with cancer. Those suffering from any prolonged illnesses like HIV/AIDS, diseases of different organs like kidney, liver, lungs, nerves, will also benefit from it. Palliative care is the essence of all good medical practice. Ideally, all doctors should practise the basic principles of pain relief and palliative care. The subject should be incorporated in the basic medical and nursing curriculum because of the impending need to treat the suffering millions in our country. We believe that this day will not be far off.
www.palliativecare.in this site gives a list of institutes offering palliative care in India.
www.lakshmitrust.org is an institute run by Dr. Subathra Muthukumaran, who is a palliative care physician, whom you can contact through e-mail-
lakshmipaincare@gmail.com
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