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.

 

 

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18 Comments

  1. Hi Lekhni,
    Good to see you posting again. Sorry to hear about your grandma’s ordeal (and that of the family too). Agree with you.
    BTW, never realized you’re a TamBram (I’m guessing from the Madisaru reference)
    RajK

    • Lekhni, as you know, is my nom de plume.

      I wish I had more time to blog, I really miss the writing. But right now, what I miss more is being able to get more than 5 hours sleep a day :) Blogging is unfortunately taking a back seat.

    • Definitely no malpractice here, the doctors were great and she had the best care. The issue is more of what is age-appropriate care when one is in one’s nineties.

  2. Fully able to understand what you said – my mother in law also recently had to go through this and we were all stuck in the same dilemma of what the heck we are supposed to do :( The pain she went through with those tubes and ventilators and what else not – I cannot describe :(

    • That’s sad. No one should have to go through that kind of agony. Hope it all turned out well and your mother in law was able to recover and return home.

  3. May her soul rest in peace. And yes this post holds a hell lot of truth and i can completely relate to it because i have had some relatives who faced the same difficulty and dilemma. Anyway keep writing.

    • It’s ironic, because getting hired help is a lot easier in many other areas (cooking, driving, gardening). One could argue that a nurse is different because he/she has to go through nursing school, but an in-home nurse/ caregiver doesn’t necessarily need a nursing degree.

  4. So sorry to hear about your grandmother’s passing, Lekhni. I think that of all the things allopathic medicine imposes on patients, end-of-life protocols are arguably the worst, especially in big city hospitals (in India) where the means to prolong life via expensive medications and ventilatory support exist. Despite those, there are unfortunately no boards of ethics overseeing the care of patients who might benefit from a less aggressive approach to keeping Yama away.
    I have half a notion that your grandmother might have survived some months longer, had she been released to home, with just an occasional visit from a nurse to check her vital signs. She may have faded, but a least in the comfort of her home, as you said so succinctly.

    • Yes, I suspect the same thing (that being at home would have prolonged her life) :( If nothing else, she would not have to suffer the pain that all those tubes caused her, and she would definitely not have contracted pneumonia. She was quite well when she entered the hospital (apart from the usual hypertension etc) and the only reason she was admitted was for observation because she had had a fall.

      She was 93, had led a full life and had no real desire to continue living. But I wish she had died in peace and without pain :(

  5. My mother-in-law and both my parents were fortunate enough to pass away at home. I managed to get decent home nurses, although one did have to keep a watchful eye on them, and managing the team of helpers at any given time was not easy. My mother-in-law had been hospitalised for respiratory problems, underwent several complications, but then recovered enough to come home, and survived for about two months or so after her discharge.This was several years ago.
    My mother had a fracture, then heart problems, was discharged, suffered a stroke after about a month and a half at home, was hospitalised, came home again with a feeding tube inserted in her nostrils as her left side was completely paralysed- speechless and helpless, it was a relief when her suffering came to an end. My father had been hospitalised several times over the last few years of his life, but during his terminal stage he remained at home with 24 hour care, diapers, then later on a catheter, a nebulizer, an oxygen cylinder, an air bed for his bed-sores. It was painful to witness. Nonetheless, I am glad that all of these elders passed away peacefully at home. A hospice still seems like an impossible dream in India, unfortunately.
    It seems a shame that your poor grandmother had to undergo what seems like needless suffering, poor lady. My condolences to you and your family.

    • Sorry to hear about the end-of-life health issues of your parents and mother-in-law. It all sounds very painful, and I can only imagine how hard it must have been for you watching them suffer :( But clearly, you did everything possible to alleviate their suffering and yes, being at home with you (instead of meeting family only an hour or two a day) makes a lot of difference.

  6. Sorry to hear about ur grandmother. My grandmother is also suffering through a same phase..she is being hospitalised gain n again all due to infection probelm, sodium levels and oxygen rate. We are desperately looking for a home nurse so that we can provide her with all good homely atmosphere. I’ll be very thankful to u if u can help me with this……Thanking You

  7. I am a Geriatrics doc in the US. I am also trained in hospice and palliative care. I came across your blog when I was trying to look up hospice care in India. I can tell you that despite having access to hospice and palliative care in the US, it is still a challenge for patients to get this care when they need it. for newer physicians this is now part of medical school curriculum but the older docs still don’t think about this. My own grandma died in the ICU here at age 90 and went through. Lot of suffering towards the end. End of life care is a difficult thing to bring up especially for physicians whose focus is to fix and treat. I hope this will change.

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