Dr Girish Trivedi is a general practitioner who founded the AIDS Combat International, a non-political, non-sectorial, and non-profit organization working round the clock for HIV/ AIDS patients. He realized the difficulties faced by HIV/ AIDS patients while running his clinic and has been dedicated to their service since 2000. Now, ACI also focuses on women and children, provides free ART therapy to children below 15 years of age, and provides medical support to more than 400 families through their Home-Based Care.
Palliative care is an approach where we try to improve the quality of life of the patient. We try to improve the quality of life of the patient and the caregivers too because they are also under a lot of Stress when they have their loved ones suffering from a life-threatening disease. Palliative care is one of the main aspects of dealing with life-threatening diseases, mainly cancer. Palliative care is recommended when the disease worsens; we then try to reduce the Pain and symptoms.
Emotionally, they will feel that there is somebody with them all the time when we talk to them. They will be emotionally stronger and will feel that there is somebody to listen to them. When we are giving palliative care, we try to train the family members because they are with the patients always and have to listen to their sufferings. The patient should enjoy every moment of his life, and to ensure this, we try to fulfill the patient's desires in whichever way we can.
Caregivers are also under a lot of Stress because they also know that the patient's situation is not very promising. They should also be mentally strong and give 100% to the patient's care. They should be mentally prepared that there might come a time when they can lose their loved ones and see that their patient is relieved from Pain.
The first and foremost misconception is that palliative care is given when the patient is going to die within weeks, but this is not the truth. People think that Pain is a part of dying and palliative care will not help a lot, but this is again a myth. When there is pain, there are a lot of things to be done. We give them a heavy dose of morphine, but most people are reluctant about this because they think it will have a lot of side effects or will provide only temporary relief. One more myth is that palliative care starts when the treatment stops, but this is wrong as we can give care along with the treatment also. People think that it deprives hope, but the fact is that palliative care makes it easy for patients. Many people have the wrong mindset that palliative care can only be given in the hospital, while it can also be provided at the patient's homes.
Hospice care is given when the doctors feel that they have done enough in the hospital. In hospice care, there is a hospital-like set-up at home itself where all the facilities will be available. A professional team of medical doctor and nurses will try to treat the symptoms and the disease, but they will not go into aggressive treatment. The treatment is given according to the symptoms. Hospice care is a collective teamwork by the doctors and nurses to put the patient at ease.
Firstly, a lot of awareness should be created on palliative and hospice care. People think that they would not be able to manage the patient at home. The family members should be taken into confidence before starting palliative or hospice care. We should also explain to the patient what would be done in hospice or palliative care. Our primary purpose in both these cares is that the patient's life should be more comfortable. The most important thing is the acceptance part by the patients and caregivers because it is difficult for the patient to face death and for the caregivers to lose their loved ones.
We should slowly explain to the patients that the doctors have tried their best, but now the doctors want them to be at ease, which is why they are arranging the treatment at home. The patient also has to face that it will happen, but we cannot tell that directly. We should tell them and prepare them to take things as and when they come. We need to support the patients emotionally to make his/her end-journey smooth. Even the caregivers should be counseled for this and should be given emotional support.