I’ve spent the last month working at two institutions in the south of India: Karunashraya Hospice and the Institute of Palliative Medicine (IPM). Karunashraya is a 75-bed facility in Bangalore offering free palliative care services for advanced stage cancer patients. IPM considers themselves to be one of the pioneers of the palliative care movement in Southeast Asia. It is a WHO collaborating center, training facility, and an outreach arm of the Pain and Palliative Care Society. Both have given me new insights into palliative care and end-of-life care. Both have, however, also left me questioning the role of and the need for palliative care as a unique specialty.
Karunashraya is hands-down one of the most beautiful hospices I have ever seen. When designing the hospice center over 20 years ago, the Karunashraya founders took great care. Each patient bed is next to a door opening up to the fountains in the middle of the center. The patient beds can be easily wheeled outside and placed next to the fountain, surrounded by lush greenery. Having worked at a hospice center in the United States that provides care at a reduced cost to terminal patients, I prepared myself for the possibility that the free care I saw in Bangalore may also lack some quality. This, however, was not the case.
While nearly 75 patients felt like a lot compared to the 20 beds, and often fewer patients, at Hospice San Camilo, Karunashraya certainly had the medical staff to support it. Four doctors and forty nurses or nursing aides covered the six separate wards daily, ensuring that each patient’s need were met. The mulidisciplinary team also included a physical therapist and several counselors, who worked to ensure the daily happiness of the patients and to meet their emotional and spiritual needs as they neared the end of life. The doctors rounded in the morning to make any necessary changes to medications, and they helped handle outpatient cases in the afternoon. Most of the patient care was managed by the nursing aides, who were usually young women from poorer villages. Karunashraya hosts a free, 6-month nursing aide training program to provide these women with an employable skill set. After the training program, they are free to seek work at another hospital, although most choose to stay at Karunashraya.
During rounds, most patients in the wards I visited seemed relatively comfortable and content. Most patients were also healthier than what I pictured when I heard “advanced-stage cancer patient” ––I came to realize that the condition of the admitted patients was largely a product of Karunashraya’s sprawling home care initiative. The majority of patients in Karunashraya were there for less time than I was. And, this fast turnover of patients was due to discharges rather than deaths. Only symptomatic patients were admitted to Karunashraya. Once their symptoms were controlled, usually with medication, sometimes with physical therapy or counselling, they were discharged. This was so contradictory to my idea of hospice as a place where patients go to die. Instead, most patients came here for symptom relief. Upon discharge, patient care was managed by the home care teams. With three teams based in different parts of the city, Karunashraya has nearly all of Bangalore covered (trust me, it’s a large city). With a population nearly four times that of Quito, I wondered how Karunashraya achieved such greater coverage than what I had seen previously.
It was not until my last day at Karunashraya that I was able to accompany one of the home care teams, and it was during this last day that I had a lot of my questions answered. The home care team was made up of three nurses and one driver––no doctors. Most home visits lasted less than 10 minutes; if they were any longer it was only because the catheter change, bladder wash, or wound dressing required more time. After the thorough and attentive care I witnessed in Karunashraya, I found the rushed delivery of the home care team to be a bit disquieting. To be fair, the majority of the patients did receive adequate care. Most were comfortable, with little pain or new symptoms. A quick check-in really was all that they needed. The first patient we visited, however, an 80-year-old man with an osteogenic sarcoma, appeared to be in quite a bit of discomfort. As we entered the room, he was sitting upright in his chair, eyes closed, arms crossed over his chest, muttering something to himself. The only time he seemed to acknowledge our presence was when he winced as the nurses moved his arm to take his blood pressure. Before leaving, the nurses left him with a mouth wash for oral hygiene and refilled his blood pressure medications. As we left, one of the nurses, despite her limited English, tried to provide me with a little more information: “Fentanyl patch change tomorrow.” I nodded, accepting he would be in pain at least until then. Obviously, these nurses were not authorized to prescribe new medications–I didn’t just expect them to whip out morphine and an IV on the spot, but I thought maybe they would at least call and consult one of the doctors. When the head nurse wrote the same note that she had written for his five previous visits, and subsequently for all other patients, however, I knew there would be no follow-up: Patient alert and comfortable.
This is not to say that nurses are unable to carry out sufficient care on their own, and it is essential that I reiterate that I only attended one home care visit with this team. I feel almost certain that this case must be an exception, but nonetheless, it led me to interrogate the role of nurses in palliative care and question whether palliative care nurses need special training. As I shadowed the nurses, there was nothing missing from the medical procedures they performed; they were clearly well-trained and knowledgeable about the patients and their conditions. With the high-volume demands of the home care team, however, there seemed to be no time for the buzz words of palliative care: compassionate, holistic care. The word Karunashraya literally means, “abode of compassion.” And at Karunashraya, where there are 40 other nurses to support the patients and their needs, this type of care seemed to come easily. Ensuring that this type of care persists outside of the abode of compassion, whether it be in a home or in a hospital, is the real challenge.
As the potential of nurses in delivering palliative care continues to be recognized, I find myself questioning more and more the need of palliative care as a specialty…shouldn’t all health care providers be concerned with the comfort and overall wellbeing of their patients? Why do we have to label someone as a palliative care physician to ensure that a patient lives without pain? I was discussing the need for palliative care as its own specialty with the other Watson fellow currently studying palliative care who just happened to be at the same death and dying conference at Karunashraya (seriously?? Watson magic*). She acutely noted that it is almost as if the goal of palliative care is to put itself out of business. If each physician strived for compassionate, holistic patient care (as they all arguably should), palliative specialists might not be necessary. Yet we have created a system with this necessity, and until we can change the culture of healthcare, patients still need someone to fill the gap.
When I reached IPM, located in Kerala, a socially unique, southwestern state of India, I continued questioning palliative care as a specialty, and who should be involved in the delivery of palliative care. If I thought the nursing-led home care teams at Karunashraya was “decentralized” delivery of palliative care, IPM took it to the next level. Supported by nearly 400 volunteers, most college-age or into retirement, community involvement is integral to IPM’s operation. Not only are the volunteers largely responsible for various fundraising activities, which enable the delivery of palliative care at a drastically reduced cost, they all are trained about how to support a patient receiving palliative care or a health care professional providing palliative care. They are an extra pair of hands when needed on a home care team, organize fundraising events, and even fill the role of gardener, janitor, educator, and driver as needed.
IPM also works in conjunction with several community palliative care centers. There are five centers spread throughout Calicut, each with a demarcated area of palliative care coverage. Together with IPM, these centers cover all of Calicut. The community centers have no in-patient or out-patient facilities––they only provide home care services. There also are no regular physician consultants. Doctors like Dr. Anil Paleri, a palliative care physician who used to be the director at IPM, work with the nurses once or twice a week to visit the patients in need of a physician consult, as decided by the nursing team. I spent one day on home visits with Dr. Anil and one day with just the nursing team. For Dr. Anil’s home visits, the patients and the attention they needed had been triaged by the nursing staff, which led to efficient but thorough visits.
As with the nursing home visits at Karunashraya, the community nurses visited homes mostly to deliver medications and routine procedures such as catheter changes or bed sore attention. Because of the multiple community care teams, however, the nurse I worked with only had a narrow area in Calicut to cover in a day. Less time was spent driving between houses, and as a result, more time was spent with the patients and more individual needs could be met. Sister Jisha was accompanied by one volunteer, Mr. Vinay, who helped with charting and conversed with many of the patient’s families. When I spoke to Mr. Vinay about his motivations to volunteer with the community palliative care teams, his explanation was quite simple: “We’re all going to be old one day. I hope someone will be there for me when I reach that stage.”
After better understanding the roles of volunteers, nurses, and doctors in the delivery of palliative care at Karunashraya and at IPM, I was struck with the realization that the most decentralized or “un-specialized” palliative care I have yet to see was actually back home in the United States. I spent my four years at Davidson College volunteering at the Serenity House, a nurse and volunteer run hospice center near my college. During my four-hour shifts, I would be accompanied only by one other volunteer, who was often another student from Davidson. Together, we were responsible for ensuring the comfort of the home’s two patients (by my senior year, this number had increased to three patients). If we needed assistance, there was always a nurse on-call. Only now do I realize I honestly have no idea what role doctors had, if any, in the delivery of care at the Serenity House. Surely they wrote the patients prescriptions…but I have no idea when or where. At times, I feel quite guilty about having participated in the delivery of this palliative care. The patients and their families were left without any professional support for emotional or spiritual needs. Families grieved either on their own, or with consoling words from a mere 18 to 22-year-old with absolutely zero training on the matter. As for the patients, I did my best to ensure they were comfortable, but changing briefs, positioning, and reading to the patients can only do so much. I did the best I could, but now I must accept the fact that it was not good enough. And that fact reveals the answer to the very question I’ve been asking all of November. Specialized palliative care is needed. That does not mean, however, that the rest of us cannot embrace a palliative care approach.
*If you want to read more about Watson magic and international palliative care, check out my friend’s blog at https://peripateticpalliation.com/. She is an incredibly talented writer whose journey is offering many different insights than my own.
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