Palliative care is mistakenly understood to be terminal care to alleviate pain when the treatment itself has failed. Treating the ‘whole person' for relief from distress and pain should be the goal from the beginning of the treatment itself
Medicine is not about conquering disease and death, but about alleviation of suffering, minimizing harm, and smoothing the journey of man.
Mrs. G, aged 56 years, had just completed her treatment for cancer of the stomach. She was pleased with the treatment but was quite dejected that she continued to have pain and nausea throughout the course of her treatment. Actually, Mrs. G need not have gone through this suffering as these symptoms could have very well been treated even while she was undergoing treatment for cancer.
Mrs. S, aged 43 years, underwent radiotherapy and chemotherapy after surgery for breast cancer. She thought that everything was alright. A few months later her arm started swelling, making it increasingly difficult to move, much to her physical and mental agony. She thought that nothing can be done and she has to learn to live with it. Unfortunately Mrs. S did not know that active treatment for this swelling, ‘lymphoedema', is possible and should ideally begin early to get effective relief. In fact, preventive measures are taught soon after surgery.
Palliative Care would have done much to relieve the suffering of both these patients during and after treatment.
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.
Sometimes patients with their families consult us soon after seeing their oncologist, simply to get reassurance for ‘getting better'. They wish to discuss social and financial matters regarding treatment. Many are willing to sell their life savings or stop education of their children, “if they could only be assured of cure”. After listening to all their concerns, we help them to take decisions regarding treatment. We also explain the benefits of cancer therapy and encourage them to undergo the prescribed treatment, assuring our care whenever needed.
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.
Dr. Subathra Muthukumaran is a Palliative Care Physician. Email: firstname.lastname@example.org; www.lakshmitrust.org