INPCS Blog: Voices in Neuropalliative Care

Palliative Care Home Visits in Rural India

Stephanie Carmichael, Allison Smith

It is a pleasant morning in late February as we bump along a rural road in Uttar Pradesh, India. We are joining a palliative care home visit to a man with late-stage oral cancer. When we arrive, we find there is little to do medically. The palliative care nurse, Sr. Rajani, checks his nasogastric feeding tube and finds no clogs or nasal breakdown (Figure 1). The family has learned to diligently maintain the tube while creating their own feeding formula: a slurry of diluted rice, lentils, curd and egg.

The patient presented to Kachhwa Christian Hospital (KCH) two years prior with a serious case of oral cancer. He was suffering incredible pain, with his jawbone visible through a weeping, open tumor, and malnutrition had left him in poor condition. Now he is back at home receiving pain management, nasogastric feeds, and caregiver support from medical staff. Weight gain, symptom management, and simple physical therapy techniques have significantly improved his independence and quality of life...

Click here to read more

Talking to Bellybuttons

Cindy Bittker

My sister, Terry, had disabilities that were hard to put neatly into one diagnostic category. She had some health problems from birth, some she acquired along the way, and some were longstanding but unrecognized. Terry's constellation of problems didn't have a diagnosis, didn't fit into an identifiable group, and didn't have a name. But she understood the difficulty I experience living with advancing Parkinson's disease in a world where very few people understand even without having the disease herself.

Terry's medical and health problems were not the greatest challenge in her life. They should have been, but they were not. Her biggest challenge was finding a place she fit in, finding people like her...

Click here to read more

Meaningful Connections: Balancing the Art, Science, and Mystics

Ambereen K. Mehta, MD, MPH, FAAHPM

It was a usual day in ALS clinic – busy and intense, yet full of meaning. Unexpectedly, our clinic’s nurse practitioner asked for my help urgently with one of our patients.

She led me down the hallway to another clinic room where I found my patient lying, pale, barely breathing on the gurney. I had never met him or his wife in person before. The first and last time I spoke with them both was by video for a telemedicine visit. He had been referred to me because he was suffering from severe panic attacks related to shortness of breath that was the result of his progressed ALS. We were trying to find ways to provide him with relief including meditation and medications, and today’s in-person visit was to follow up.

During our first video visit, I was struck by his conviction. Despite being in a constant state of panic, he was so clear about his wishes. He shared he was not afraid of dying and was firm in his beliefs about what lies on the other side. He knew he did not want to prolong his life on machines. When it came time for him to need continuous life support, he wanted to be made comfortable. His peace with these decisions transcended the physical gap between us...

Click here to read more