“In regions where the knowledge gap is wider than the technology gap, we were able to show that the internet is a readily available tool for the exchange of knowledge that ultimately benefits the patients.”
Pilot project participants
“Happiness has entered my house”
Wife of patient with metastatic lung cancer comment on the care provided by the palliative care team.
Long distance educational support between a Palliative Care physician in Los Angeles and a multidisciplinary Palliative Care Team in Mumbai comprised of interactive sessions over the internet three times a week for two months. Cases were discussed and treatment plans for new patients and new symptoms were formulated. The role of the physician in Los Angeles was not to take over the role of prescribing for the patients but merely to educate the managing physician in Mumbai. Follow up of patients who were already receiving care was discussed as well. When possible, theoretical discussions and lectures on power point were discussed.
The required equipment for this exercise was a computer with a microphone, webcam, speakers and a good Internet connection. The equipment was available at both locations and no additional investment was required. A popular and readily available Internet chat room was used to conduct the sessions. Language was not a barrier since all communication was in English. There is a time difference of twelve and a half hours between Los Angeles and Mumbai, with the Indian time being ahead. Sessions started at 8:00 pm in Los Angeles, which corresponded to 8:30 am the following day in India. In case there was an urgent situation, the team in Mumbai could send a text page, which would initiate a call from the physician in Los Angeles.
The aim was to test this pilot project and to evaluate its effectiveness and benefits.
“This project started a revolution in the community”
Dr. Sanjay Pisharodi, Palliative Care Physician, Mumbai, India
The exercise worked very well from a technical standpoint. The sessions were held with ease. There were minor technical difficulties, which involved the relay of voice. This was easily overcome by reconnecting on the voice mode.
A total of forty-three and a half hours were logged. Each session was projected to last an hour; however, sessions lasted one and a half hours on average. There was a bilateral exchange of thoughts and ideas. In the two months, eighty-one emails were exchanged. The email correspondences included follow-ups, treatment strategies, doubts, and clarifications. In urgent situations, the text messaging system was used. Four text messages were received with each prompting an international call to discuss patient symptom management. The strategy was effective in handling situations that needed prompt attention.
A total of twenty-six patients were cared for over a two-month period. Of the twenty-six, twenty were diagnosed with cancer. Fourteen of the twenty cancer patients were treated for pain. Thirteen of the fourteen patients had severe pain on presentation. The other patient had moderate pain. Opioids were also prescribed for non-cancer conditions such as severe arthritis and symptoms such as dyspnea. One stroke patient was able to resume physical therapy after his pain was controlled. Two patients declined symptom management.Of the cancer patients who were presented with pain, thirteen had previously received treatment for their cancer and pain at a tertiary care cancer center. Four patients requested euthanasia on their first visit due to the severity of their pain. Once treatment was initiated, all patients were pain free within a few hours. Patients requesting euthanasia had a drastic improvement in their quality of life after control of their symptoms. The average duration of care was approximately forty days. All but three patients were cared for at home. The other three were treated in the hospital. All deaths were peaceful and there was no negative feedback regarding treatment rendered from the patients or their family members. Patients were not charged for any of the services provided. They purchased the medications that were prescribed.
One patient was pursuing aggressive care while being followed by the team. Five patients were followed solely for psychological and emotional support, an integral part of palliative care service.
A team approach was used with nurses and spiritual care staff members participating in some of the sessions. Various aspects of care (the physical, social, psychological and emotional aspects) were dealt with and discussed.The second patient was enrolled in the program twenty days after the first patient. During this downtime, the internet sessions were utilized to conduct case-based discussions on pain management. A total of eleven cases were discussed. There were three power point sessions pertaining to symptom management. Discussions based on the EPEC (Education on Palliative and End-of-life-care) curriculum were also held in these sessions.
“I tell my nurses that patients with cancer do not have to die in pain. This is how it should be”
Relative of patient with metastatic cancer. She is a head nurse at a local hospital.
This exercise was very successful in using technology to narrow the knowledge gap and assist in training various palliative care team members. The medical team in India now feels confident in handling the practical aspects of the art and science of palliative care. In addition, the program has found immense support from the local community and has received a letter of appreciation from the local health forum for the services they rendered.
The whole project exceeded our expectations. Most importantly, there were no technical difficulties. We exceeded the target of caring for twenty patients in two months. More importantly, we were able to relieve all of the patients’ symptoms with significant improvement in their quality of life. The impact on the patient’s quality of life and their caregivers was the most important tool in measuring the success of this exercise.
There was measured improvement in both the objective knowledge of the physician in India as well as subjective confidence before and after the project.
At the end of the project, physicians in both locations indicated an improvement in the overall understanding of the situation in the other location and also learned of the challenges, advantages and shortcomings of each system. Cultural differences in dealing with death and pain were appreciated. The physicians in India acknowledge an increase in confidence in managing patients with advanced diseases and treating various symptoms. Growth in confidence was not limited to the physical aspect of the patient’s being but also social, psychological and emotional as well. A deficiency of palliative care services was very apparent through this experience.
“We could not believe that patients with such advanced diseases, especially cancer, could live without pain and die such a peaceful death.” Physician participants in India at the end of the experience.
Impact of project on patients
A young stroke patient was unable to participate in physical therapy due to pain. Once pain was managed, the patient was able to do aggressive physical therapy.
For a patient with severe osteoarthritis, her only wish was to go to a place of worship to pray. She was unable to do so due to pain. Once the pain was controlled, she was able to fulfill her desire.
A patient with metastatic cancer requested euthanasia upon first consultation by the palliative care team due to severe pain. Within a few hours, the pain was controlled with the team being present. The patient requested a meal with family as she had not eaten well for a long time.
We propose such exercises can be used very effectively in the exchange of knowledge. Other fields of medicine may also benefit from such arrangements. Such a set up might be beneficial in education at school and college levels, as well. We hope that our experience will enable a free flow of knowledge and support between various settings, especially in the field of medicine where it can ultimately make a difference at a patient’s bedside.
One can tailor the interactions based on the needs and availability of the participants. This does not require a lifelong commitment…unless you want it to be. Good luck !!
Parag Bharadwaj, MD, Los Angeles, USA
Sanjay Pisharodi, MBBS, Mumbai, India