There is a need to have a paradigm shift in approach to patients who are terminally ill with incurable ailments. They are in terrible pain and isolation due to cancer, AIDS, paralysis, renal failure or other prolonged, debilitating diseases. Once the doctors/hospitals conclude that the patient is in terminal stages and is not bound to survive for long the efforts to cure the patient through  medicine/surgery should be given a go by. This will limit the role of a doctor to palliative care i e to minimize his pain and misery and not to prolong his life. However ‘it does not mean to leave him alone without support and medical care.’ The need is to give him good food, good nursing care, affection of the kith and kin and to make him pain-free and comfortable. As of now such centres are few in number and lack the spirit of care with compassion and affection. Most physicians have traditionally concentrated on trying to cure patients till the last breath  even when it entails huge cost and there is no hope of recovery. This approach is defective and should give way to palliative care.

What is Palliative care?

Medications and treatments are said to have a palliative effect if they relieve symptoms without having a curative effect on the underlying disease or cause. This can include treating nausea related to chemotherapy or something as simple as morphine to treat the pain of broken leg or ibuprofen to treat aching related to an influenza (flu) infection. However,here we will discuss palliative care in relation to terminal ailments only.

Palliative care treats people suffering from serious and chronic illnesses such as cancer, cardiac disease such as congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), kidney failure, Alzheimer’s, Parkinson’s, Amyotrophic Lateral Sclerosis (ALS) and many more. It is different from care to cure your illness, called curative treatment. Palliative care focuses on improving quality of life—not just in your body, but also in your mind and spirit. You may feel lonely, angry, scared, or sad. You may feel that your treatment is doing more harm than good and your kin has abdicated its responsibility. Palliative care can help reduce pain or side effects. Palliative care may help you and your loved ones better understand your illness, talk more openly about your feelings, or decide what treatment you want or do not want. Palliative care focuses on symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping and depression. It also helps you gain the strength to carry on with daily life.

What is hospice?

Hospice is a centre of care involving palliation without curative intent. Usually, it is used for people with no further options for curing their disease or in people who have decided not to pursue further options that are arduous, likely to cause more symptoms, and not likely to succeed. Hospice care under the Medicare Hospice Benefit requires that two physicians certify that a patient has less than six months to live if the disease follows its usual course. This does not mean, though, that if a patient is still living after six months in hospice he or she will be discharged from the service.

What the terminally ill patients may request?

 “Haven’t slept for months. I can’t lie down in any position. The pain is killing me. I want to sleep for just one day without the pain bothering me. Please do something, doctor.”  “No, you need not suffer any pain. You have every right to feel better,” says the doctor, prescribing injection morphine. Here the doctors’ patience and humane approach, besides energy to bear the patients’ misery is the greatest need. Use of expensive medicines/investigations/surgery is not the need at this stage. In fact national resources should not be wasted on this category of patients. An emotional comfort and confidence in the care-givers is certainly required. Instead of a hospital such patients need services of a good hospice. Putting huge financial burden in the mirage of a cure by treatments that push the already poor family to deep-debt ridden status is a kind of destruction of families in the name of healthcare is cruel and almost criminal. Palliative care is can make a difference to such people, and it will transform healthcare.”

Can you get morphine easily for palliative care?

No, not present. Once the amended Act is implemented, the licensing procedure for obtaining and storing morphine will become simple. The amendment essentially scraps the long list of licenses, which currently varies from state to state, that drug makers and hospitals are required to obtain in order to produce and store morphine. Regulatory barriers are not the only barriers to access to pain relief. I would say attitudes and lack of knowledge among medical professionals is the biggest barrier.”

Government hospitals should have doctors and nurses with training in pain management and the hospitals should have morphine and other essential narcotic drugs. Then there also has to be psycho-social support. A patient expressed the hope, “when I go, I will not be shut up in an intensive care unit, but instead have someone who cares for me sitting beside me, holding my hand. It would be the ultimate cruelty if I have to die in an intensive care unit with tubes in every orifice and masked creatures working around me in impersonal manner. If I were to get disoriented and delirious, my hands and feet may be tied up. I am looking for a world where this kind of cruelty does not happen anymore. I hope for a world where healthcare is delivered with compassion and empathy, even till the last breath.”

 

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