Perspectives: Palliative Care Home Visit
– Col. (Dr.) Nikahat Jahan, Secunderabad
After serving twenty years as a specialist in Anaesthesia and Intensive Care Medicine, I started training in the field of Palliative care. As a part of my training I, along with three of my colleagues, had the opportunity to join the palliative care team of a Non-Government Organisation (NGO) that provides home-based care in North India.
On a warm rainy morning in the monsoons, we reached the head office of the NGO and met up the Director who briefed us about their work and introduced us to her wonderfully enthusiastic team including the helpline staff with each of them explaining to us about their jobs. We were split into two groups and teamed up with two Palliative Care teams and we started off for home visits. Each palliative care team consisted of a doctor, a nurse, and a counsellor.
We first visited a new patient in an upper middle-class neighbourhood. The patient’s son told us about his mother’s illness, her clinical and diagnostic workup as he understood it. She seemed to be having an upper abdominal malignancy with metastasis into the liver, bowel, peritoneum, and abdominal lymph nodes. She also had ascites and features of bowel obstruction because of which she was unable to eat or drink for the past three days. She was however, able to take care of her basic needs. We then met the patient and the team spoke to her to found out how much she understood about her illness, what her main concerns were, whether she had pain, if she would like to go to the hospital for treatment, and if she was depressed. The lady patiently answered all the questions and said that she feared going to the hospital and that she would like to be treated at home. She was not in pain, so the team advised the family about her treatment plan which included prokinetic agents, antacids, and to give paracetamol, in case of pain. After this, the son asked the team what the NGO could do for her in terms of providing a hospital type bed and round the clock nurses to take care of his mother. I was a bit surprised by this, since it seemed as if nothing of what his mother or the team had said meant anything to this person. Was he only interested in arranging free bed and nurses for his mother by queuing up early, even though he had the money to arrange those on his own as and when they might be required? The team members politely apprised him about what the NGO could and could not provide. They informed them that the NGO provides free home visits by the palliative care team, consultation, and free analgesics, and that they did not provide nurses or hospital type beds. We then moved to our next patient.
From this upper middle-class neighbourhood, we moved to extremely impoverished slums. I for one, had never been inside a slum. The roads quickly became lanes and got narrower and narrower until it was just about 2 or 3 feet across. There were stinking open drains, mounds of filth taken out of the drains, open gutters, overcrowded lanes with urchins running around and playing, small children taking care of their baby siblings, open doors that revealed the tiny one-room homes which measured not more than 5 or 6 feet in their longest dimension. Even in that cramped slum there was a temple and a mosque in tiny rooms. After walking for about half a kilometre into the slum, we saw our second patient; a case of metastatic ovarian cancer. She was lying on a string mattress with a tiny hair oil-soaked pillow. She got up to greet us and then talked about her abdominal pain. The team checked her clinical condition, asked about her sigmoidoscopy appointment at a neighbouring hospital, checked her medications and refilled her prescription.
Her home was no bigger than half the size of what a washroom in a city apartment would be. There was an attic and a step ladder leading up to it, probably where her sons slept. She had five sons. One had gone to work, and the others were without work at present. We spoke to two of them; they occasionally got jobs as a painter or cab driver. They were extremely poor, and the tiny home hardly had any belongings. I noticed that while the team was examining their mother, two of her sons were keenly observing what was being said or done through the window. Their demeanour clearly showed that they were deeply concerned about their ailing mother and were grateful that someone had come to see her. We left the slum, but it was a sight and a feeling I will never forget. It was clear that no government help ever reached this place. It was as if they just didn’t exist in the government’s eyes; here in the heart of the national capital.
We reached the home of our third patient who was suffering from metastatic liver cancer and had been bed ridden. He had three daughters and had married off all of them; the youngest one very recently. He must have spent a lot on the wedding, as Indians often do, and was left with no savings. He was the sole earning member of the family and had no earnings for the past few months. They stayed in a rented house in a lower middle-class neighbourhood. The wife of the patient was uneducated, and she had therefore called her youngest daughter to help her take care of her husband. The wife appeared a little garrulous and evaded some of our questions. She told us that her husband who was about 6 feet tall and weighed over 80 kgs had to be helped to the washroom several times in a day as he had diarrhoea. She also said it was difficult for them to assist him as her daughter was pregnant. There was no male help available, because of which they wanted us to insert a urinary catheter. She said that her husband was in severe pain and did not sleep at night. When asked about analgesics she said that she gave him analgesics once a day. She was not giving the drugs in the prescribed doses. When questioned, she became very defensive and called her daughter to answer the team’s queries. Her beautiful and shy daughter, possibly in early 20’s, tried to answer us but was confused. I noticed that she wasn’t making eye contact with anyone while talking. For a moment I thought that the mother and daughter were not interested in looking after the patient. However, it soon appeared that they were in serious financial difficulties and were suffering from a feeling of complete helplessness leading to caregiver fatigue.
While we were about to leave, it started raining heavily and the family asked us to wait at their home till the rain stopped. I spoke to the daughter and asked her about her pregnancy. She was seven months pregnant with her first baby. I told her that she should look after herself and if possible, they should find a male attendant for her father. She said, it costs a lot of money, and they didn’t have that kind of money. She then said, “You think we are neglecting my father but that’s not true”, and she just broke down and cried. I told her that we were not judging her or her mother, and that we understood her situation and were trying to help them. The NGO counsellor told us that the family had been offered the option to admit the patient to a free Palliative care hospital, but they refused. They wanted to look after him at home. This is what most Indian families would do, as sending them to a hospice would be considered an abandonment of a loved one. We then gave them some suggestions for keeping a part-time male attendant to look after the patient which they said they would explore. They offered us tea, we talked about the in-laws of the youngest daughter, and by the time the rain stopped, we left. Both the mother and the daughter were smiling, and the patient had slept off after the team nurse gave his swollen feet a nice oil massage.
We then moved to see our last patient in a posh locality. She was a breast cancer survivor but was battling the recurrence of ovarian cancer which was causing ascites and malignant bowel obstruction. Her daughter and son-in-law were extremely concerned and caring, they had also employed trained nurses round the clock for her care. It was clear that she was being looked after very well by her family who also had the resources to do so. This seemed like an ideal situation. We saw the patient and addressed her minor issues. Spoke to the daughter and son-in-law about future treatment plans. Gave them dietary advice and left.
In just five hours we had seen four very different scenarios. A well-to-do family that wasn’t keen to spend time and money on their mother’s care, an extremely poor and helpless family in a slum that wanted to take care of their mother but had no resources, a family crippled by their social and financial circumstances and a family that had both the will and the resources to care for a mother dealing with breast cancer followed by ovarian cancer over the last 24 years. It was an overwhelming experience for a beginner like me. I must mention here, about the amazing skill, compassion, and enthusiasm, which the palliative care team displayed.
India is a country with extreme socio-economic disparity. India is also a resource-poor country where healthcare is not available freely. It is a country that rates very low on the index for both quality of life and quality of death. Cancer treatment is very expensive and unaffordable for a majority of the people; when the economically weaker sections are diagnosed with terminal cancer and are in need of palliative care support, with hardly any resources at hand. I feel that as a start, every doctor and nurse must have basic training in palliative care and must contribute to helping those in need of palliative care. There is a need for much more government funding and NGOs involvement in palliative care. Social support is also extremely important as it requires both money and the family’s resolve to take care of a patient at the end of their life and to help improve the quality of death.
About the Author: Col (Dr) Nikahat Jahan is a Senior Advisor, Anaesthesiology and Critical Care, at the Military Hospital, Secunderabad.