Hospice care and in-home nursing in India

My grandmother died last week.   When I heard the news I was profoundly relieved.  Sad, yes, but mostly relieved.  Let me tell you why.

She had spent the last month or more in the hospital, mainly in the ICU at a big name hospital.  A great team of doctors was taking care of her round the clock, as were a great team of caregivers – two sons and three daughters.

The problem, in some ways, was that there was too much care.  There were tubes attached to her neck, and tubes attached to her wrists. She had bed sores.  She had never worn anything but a sari tied in the orthodox “madisaar” in all her ninety three years, now she had to wear a hospital gown, and worse, diapers.  She hated the diapers, and in the initial few days of hospital stay, would insist on walking to the bathroom.  She was not allowed to drink more than a few teaspoons of coffee, even when she begged for it.

There was nothing much wrong with her when she was admitted to hospital.  She had had a fall, and though she did not seem to have suffered anything more than a cut, the doctors found that her sodium levels were low.  So they began injecting sodium.  But hospital stays take a toll on everyone, and more so in the elderly.  Soon she had pneumonia and was on a ventilator, and by the time she recovered from the infection and was off the ventilator, her heart began to weaken.  The doctors would not discharge her until she was perfectly normal, which, for 93 year old, was probably  expecting too much.  They even went to the extent of saying, at times, that they could not guarantee she would even reach home alive if they discharged her (although  there didn’t seem to be anything to justify this statement, she was mainly just under observation, though taking medication.)

Even if she had been discharged, the question was how to take care of her.  The hospital stay was very expensive (Rs 20,000 per day on ICU and medication alone, not including doctors’ fees) and she did not need much except for an oxygen cylinder and a nurse.  But round the clock nursing support was not available in the city, and my grandmother’s children are all themselves in their 60s and 70s and cannot manage 24×7 care without help.  My grandmother was desperate to go home, she was begging every visitor every day to take her home, but that was just not possible.

It is always very difficult, emotionally, for any child to decide to stop treatment for a parent.  It is even more difficult, rather, almost impossible to do so when the doctors treating her are eager to try every possible aggressive intervention.  But at what stage (and what age) should the doctors decide to step back and try palliative care/ hospice care instead of prolonging the agony? Shouldn’t this be either the doctor’s decision, or at least a suggestion by the doctors to the immediate family?  Only the doctors know the exact prognosis and chances if recovery.  They are also the ones who know how much pain a procedure can cause (the family can guess by looking at the patient, but when the patient is in ICU they don’t see him/ her  often).

There are many studies that show that hospice care/ palliative care can actually prolong the life of patients. Here is one study, which states “Prolongation of life and focus on quality of life seem to be at first glance mutually exclusive. However, in daily clinical routine they occasionally do simultaneously occur, when further medical treatment to prolong life is not successful, not appropriate, or simply refused by the patient.”  There are other situations, like end-stage cancer patients, where palliative care has been shown to prolong life.

If nothing else, in my grandmother’s case, it would have allowed her to die surrounded by her family, in familiar surroundings, doing the things she liked (watching tear-jerker serials, drinking coffee).  The question is – why is this facility not available in India?  There are two ways of doing this – one is to have a hospice care center in the hospital itself where the patient could be admitted, and/or have a staff of trained nurses who would be available for in-home care for patients.  The doctors should be able to suggest hospice care rather than aggressive intervention where they feel the situation demands it.

This is going to be an increasingly common issue in India, as the population ages.  Paying for round-the-clock nursing is not the issue here, many people can afford to pay and would be willing to pay. The problem seems to be availability of trained nurses. The ideal situation would be for the hospital itself to provide in-home nurses who would take over the care of the patient.  This way the hospital is not  discharging the patient without continuation of appropriate care.

From my research, it appears that there are a few hospice facilities in India, although these appear to be independent entities that are not affiliated to any hospital.  In-home nursing is a completely different story.  There are a few firms that claim to provide in-home nursing, the credentials of these firms and quality of nursing  is anybody’s guess, and very few hospitals loan out nurses for in-home care.  For a country that provides exports nurses on a regular basis, it is amazing how difficult it is to find a trained nurse in a major city to provide in-home care.

From a hospital’s perspective, I can see that providing hospice care is not as lucrative as more aggressive treatment.  But surely, doctors are not thinking of the hospital’s bottom line when they suggest medical treatments?  I’d rather think they are just showing misguided enthusiasm.  Or perhaps, in the absence of a framework for hospice / palliative care, they are forced to choose between aggressive treatment and no treatment.  In the case of my grandmother, this meant that with the best care in the world, she still ended up suffering so much (despite not having any painful illness) that one could only see her death as a relief from her suffering.

All of which just underscores the urgent need for a better system of hospice/ palliative care in India, and a much better system of in-home nursing assistance.