CMC - Day Seventeen

Chettinai is 65 years old with long grey hair in the early matted stages of imminent dreadlocks. I first noticed her huddled in a dark corner, squatting on her calloused and cracked heals in a filthy green silk sari. The carried the strong smell of an infected wound. Without a blouse her sagging wasted breast could be seen hanging near her waist. A woman, a relative perhaps, yelled at her, beckoning for her to move to a proper seat amongst those others waiting for their appointments. Others, employees, tried to do the same. The women shook her head. She had the crazed look of an animal trapped in a corner, one who only wants to find a place to hide.

During my first week of rotations, in an outpatient session for Child Health I, i noticed a sign in the general OPD (outpatient department) building that said Palliative Care Service. I found this surprising, knowing how underdeveloped such services are meant to be in the developing world. From a resources point of view, palliative care is a more efficient way of taking care of people with terminal illnesses but this is a realization that is coming slowly even at home - refer to the unchanging Medicare Hospice benefit. From a care point of view, palliative services are the most efficient at attending to quality of life when life is limited. I should have expected that CMC would have figured that out.

As this is my last week, i have the chance to float around a bit, and i spent the morning with the palliative care service, headquartered in a 10'x10' room in a corner of the OPD. As many of you know, this is a particular interest of mine, and I immediately felt at home amongst this Hamilton, one of two chaplains on the service (the other being his wife) sat me town and introduced me to the service. The three doctors, two nurses, two chaplains, one social worker and one secretary offer outpatient and home based services to (mostly) cancer patients. This is because, Dr. Rina, head of the department is a radiation oncologist and because HIV patients are taken care of by the HIV team at the end of life. Also, those with degenerative neuromuscular disorders ( e.g. ALS, or Lou Gehrig's disease) are taken care of by neurologists. The team sees approximately 30-40 patients per week in the OPD and 30-45 per week on their home rounds. Their catchment area is an approximately 50 kilometer radius from the hospital. On the mondays and wednesdays that they do home visits the might spend the whole day travelling. They only rarely have inpatients, most of whom come for one procedure or another, because most people want to die at home. A Catholic charity nearby is scheduled to open a 50 bed hospice soon, however, and the CMC palliative care service will provide medical care. Hamilton thinks they will have difficulty filling it. Based on what i've seen at home, how desperately the services are needed, i think they'll be full. Istn' it true that "if you build it, they will come."

The soft-spoken and eloquent young chaplain explained that the service has two primary goals, one to provide patient care, the other to educate about palliative care. Since the department opened four years ago they have made great strides in meeting both. Within the hospital they are now a well and increasingly known referral service and their patient rosters continue to grow as a result. As a result of several donations, they are basically able to provide this care for free. It is not preferentially distributed to those who can afford it. On the education front they have institutionalized their efforts in many ways, providing one week of mandatory training to the undergraduate medical students. Proactively, they are currently encouraging the government to make it a mandatory part of medical education in every Indian medical school. Oncology registrars spend one month per year for two years in the service, and they have initiated a one year post-graduate fellowship in palliative care, the first of its kind in India. The team also invites teams of social workers, chaplains, nurses and physicians from smaller hospitals to complete short training courses so that they may start their own services. All of these educational programs will be run from the first floor of the new hospice building, which will also have housing for residents, fellows and visitors from abroad. It sounds an exciting project. Harrison will be renouncing his role as a chaplain and taking over as director of programming, which will add a new dimension to the teaching he does currently on the spiritual aspects of dying and palliative care.

It all sounds great, and yet their optimism about and pride in their service is coupled with a humility that comes from doing a very difficult job. Chettinai is a case in point. The women who yelled at her to be seated in the waiting room is her daughter-in-law, with whom she lives, along with her two granddaughters. Her son, the father of the grandchildren, died some time ago and the daughter-in-law has been left alone to care for her. This is a difficult task. Chettinai has a type of cancer called spindle cell carcinoma, a malignant epithelial cancer that has eroded through the skin under her right axilla (armpit) and grown like a mushroom into a large fungating mass about the size of a small melon. The infected white flesh had a sheen of oozing fluid. The skin that used to cover the mass hangs on if dried pieces. If you think it's unpleasant to read about i can assure you the sight was far far worse. As was the smell. The young, sweet and very competent physicians with whom i worked explained Chettinai's story.

Even when her husband was alive, she was used to being the boss in the family. When he died, not much changed, except there was less money to go around. She, her son's wife, and two daughters were dependent on her son for their welfare. But she was still the boss and, as in many families, expected to be catered to in her old age. When her son died, i'm not sure how, she might have known about this strange growth under her arm, but i'm not sure anyone else did.

Her daughter-in-law looked strung out, her last nerves worn ragged by taking care of a seemingly unappreciative woman as well as her two daughters. Tears fell intermittently from her tired face. Chettinai, ruling the roost, doesn't seem to let her do anything, including change the dressings that she needs to have changed twice daily or work, which she must do to earn money to feed everyone. Her daughter-in-law defies her, working two days a week, leaving her two frightened daughters at home with a women who smells tremendously and acts strangely. She's come home to find Chettinai in the care of her neighbors after this frustrated, pained (because she refuses her pain meds), and increasingly lonely old women laid herself out on the train tracks to end her life. She worries constantly about her daughters and this morning left to chase her mother-in-law - who left for her appointment alone and without warning - leaving them without food for breakfast.

Chettinai mumbles in pain to the nurse who changes her dressing, lifting matted spiderwebs of dirty hair from the unclean and ragged surface: 'No one wants to come near me. They're afraid it's contagious. My granddaughters won't even come close. Why can't you just give me medication to kill me.' And yet she refuses to take the medications and allow the care that might improve these problems. What is worse, the cancer is malignant but hers will likely be a slow death.

They cannot afford their medications, and they are already given concessions. Their is another son, but he remains aloof. He seems to have abandoned them all to their fate. Their is the new hospice, but the mother refuses to move from her children's home. She seems not quite right, like she could use psychiatric care, yet she remains alert, oriented, without delusions. All of this troubles the team and they spend thirty minutes discussing what exactly to do. In the end, there is no conclusion. They will write for new medications, encourage the mother to accept her daughter-in-laws care, and encourage the latter to be patient with her. Caregiver burnout is a common problem in end-of-life care provided by families. Usually there are resources to support these caregivers. In this case their seem to be none. What can be done?

These are the cases that most challenge palliative care services. Fortunately, they seem to be outweighed by those cases in which individuals and families find meaning, find reward, find each other in the process of dying. It is the challenge of assisting families in this way, of finding solutions when none seem to exist, and of caring for people when there is little time but endless space to do so that holds my interest in palliative care.