Authors: Marwa Saleh, MD UCSF Global Health HEAL Fellow; Sabina Khadka, Auxillary Nurse Midwife
In 1982, Eric J. Cassel wrote, “the relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick.” What is suffering? At the surface, this question may seem quite philosophical, but suffering is what drives our patients to seek care in hopes of a relief.
80-year-old Bikram presented to the Charikot Hospital Emergency Room in severe respiratory distress, he felt he was unable to breathe. He suffers from the most advanced type of Chronic Obstructive Pulmonary Disease, and that put so much pressure on his heart leading to its irreversible failure in pumping blood to the rest of his body. This leaves him with symptoms of heavy, uneasy breathing, the sensation that he is drowning as his lungs fill up with fluid, his legs swell up constantly and make it difficult to walk and he is simply, suffering. This is his third admission in the past 4 months at our hospital. The last time he felt he was able to breathe comfortably was over 2 years ago, he forgot what that feels like.
COPD prevalence is estimated to range between 23-43% in the general Nepali population. Also, COPD based on data from 2015 is ranked as the number one cause of death in Nepal and the number three cause of morbidity, a medical term for suffering. When an individual is diagnosed with COPD the goals of treatment are not to cure, as that is not possible, but rather to control the disease and prevent further damage to the lungs, by offering inhalers and reducing exposure to risk factors like smoke (whether smoking or cooking smoke), air pollution, and other occupational exposure. In many cases of COPD, the disease progresses even with medication, and the patient ends up suffering like Mr. Bikram, with severe heart failure causing unbearable symptoms. At this advanced stage of disease, and after we have prescribed the patient every possible inhaler and oral medication to control their COPD we are left with our hands tied, simply treating every worsening episode of COPD by doubling his inhalers, giving higher doses of steroids and offering oxygen in the hospital.
Palliative care, as defined by the World Health Organization (WHO), is “the active total care of the patients and their families by a multi-professional team at a time when cure is not an option and life expectancy is relatively short. It responds to physical, psychological, social and spiritual needs.” As patients live longer thanks to new treatment options, the field of Palliative care has been gaining new momentum across the world, reminding us to address what the patient is truly seeking, relief of suffering. Mr. Bikram wants to breathe, he wants to be able to sleep at night without the sensation of suffocation. He wants to play with his grandchildren, and be at home for whatever time he has remaining in this world. He does not want to spend more days in the hospital. He wants life in his days, and not just days in his life. This is when the concept of palliative care becomes essential, to our patients with severe medical conditions, for which we offer no cure, only temporary treatment.
There are many similar medical conditions that are similar in theory to COPD, advanced cancer, kidney failure and liver failure to name a few. For patients suffering from these diagnoses, here at Charikot Hospital we have started implementing a Palliative care checklist. Every patient that may benefit from having a full physical, psychological, social and spiritual assessment is interviewed by either one of our nurses or staff physicians using the checklist as a guide to discover any suffering symptoms that we may be able to better address using medications or counseling.
Sabina Khadka, one of our nurses at Charikot Hospital interviewed Mr. Bikram using the Palliative care checklist and discovered that he has not had an appetite for months, was suffering from constant nausea, constipation and back pain. All of these are symptoms that we can easily provide some relief for to offer Mr. Bikram more comfortable days. Ms. Sabina reflecting on her experience applying concepts of Palliative care states that, “being nurses we feel that Palliative care is very important, as it is addresses the quality of life for the patient who has chronic diseases, dying patients and their family members as well. I also feel that nursing care is incomplete without palliative care for the needy patient… Most of our patients come to Charikot Hospital from the corner of the district where transportation and health facilities are not available. They suffer from poverty, lack of education and sometimes from natural disasters as well. They come here with all the hope that we can help them, and cannot afford to go to a higher center…Treating only disease conditions will not be enough sometimes for certain cases, with palliative care patients can spend the rest of their remaining life a bit easier and happier.”
Mr. Bikram at the end of our visit stated that, “I am happy that you have listened to me and feel cared for by the team.” Through the simple checklist we have implemented we hope to help relieve more suffering for our patients here at Charikot Hospital, and offer them more comfort as their disease progresses. We hope our work here will inspire other health posts, clinics and hospitals to incorporate the concept of Palliative care in the services they provide, so that we always remember what our patients truly seek, ‘the relief of suffering.’
A Special thank you to the hard work of our MDGPs Dr Binod Dangal and Dr. Tula Gupta and nursing-in-charge Khema Sawar for supporting the Palliative care initiative.
For more information or resources on the Palliative care checklist please email firstname.lastname@example.org