Let the patients chooseIt is time we started to routinely ask patients about their wishes for end-of-life care.
Imagine this scenario: Kopila, a 70-year-old-woman, is rushed to hospital with high fever, cough and difficulty in breathing. She requires supplemental oxygen in the emergency room. She is admitted for further care and tests positive for Covid-19. Both she and her family face an uncertain next couple of weeks. In just a few months, the coronavirus has swept across the world like a wildfire, resulting in an unprecedented global crisis. In addition to overwhelming the healthcare sector, it has paralysed economies and brought the whole world to a standstill.
Available evidence suggests that older people and those with underlying health conditions such as diabetes, obesity, cancer and other immune compromising conditions are at a significantly higher risk of catching the disease. Almost a quarter of the hospitalised patients can require intensive care unit (ICU) level care, including intubation (where a tube is inserted down the throat and into the windpipe) and mechanical ventilation (a machine that helps patients breathe). Despite aggressive care, most patients who need ICU care do poorly—death rates upwards of 60 percent have been seen in patients requiring mechanical ventilation even in the most advanced health systems.
Addressing patient wishes
A 'no code' or 'do-not-resuscitate' (DNR) order refers to the concept of avoiding cardiopulmonary resuscitation (which involves vigorous chest compressions, and possibly electric shock to the heart and intubation) if a patient’s breathing stops or the heart stops beating.
A more recent and nuanced concept in this area is that of physician orders for life-sustaining treatment (POLST), which gives patients more options, and addresses the aggressiveness of care at the end of life in addition to the orders for resuscitation. This is particularly useful when a patient has gradual health decline, for example, due to terminal cancer or chronic lung disease, and there is a question, say of whether to intubate because of a complication such as pneumonia.
Despite encouraging gains in the healthcare field in the past few decades, these end-of-life issues, especially for patients with incurable and terminal sicknesses, remain somewhat alien concepts in Nepal. One can partly blame the for-profit healthcare enterprise: Patients who can afford to pay continue to get aggressive medical care until the very end—even when cure is no longer possible and a shift in focus to symptom control is needed. In many instances, lack of proper training of doctors on how to address these matters in a culturally sensitive manner is also to blame.
In addition, some doctors and hospitals are fearful of talking about end-of-life issues due to the culture of aggression and mistrust towards healthcare professionals. Finally, there is the question of patient autonomy which remains a weak concept in Nepal. In the absence of a clear patient voice, multiple family members often get involved in patient’s decisions, complicating the picture, and making it difficult for the doctors to engage in effective end-of-life conversations.
No matter what the cause, our inability to address end-of-life issues such as DNR and POLST has real consequences for the patients and families—physical (for example, unnecessary tests and procedures), emotional and enormous financial costs. Despite these barriers and challenges, it is time we started to routinely ask our patients about their 'code status'. The importance of addressing the wishes of our patients for these end-of-life scenarios has never been greater—especially given the low survival rates of Covid-19 patients who need intubation.
Although asking for 'code status' is a routine practice in most parts of the Western world, this is not done routinely outside of the ICU in Nepali hospitals. Although the Nepal Medical Council’s code of ethics and professional conduct guidelines clearly define the concept of DNR, the legal framework for its implementation is less clear. The most ideal setting to discuss the code status is when people are in stable health. In many Western countries, this happens when patients visit their primary care physicians. However, this is currently not possible in Nepal as the majority of the population lacks primary care physicians.
Another obvious avenue to address patient wishes for end-of-life care is in the hospital setting. At the time of admission to hospital, doctors should make every effort to discuss the code status—meaning whether or not patients would like to be intubated if their breathing were to stop or revived if their heart were to stop beating. If a patient tests positive for Covid-19, doctors should revisit the code status by emphasising the high death rates and explaining that intubation and aggressive ICU care are likely to cause more harm than benefit. Hospitals and medical colleges should make efforts to train doctors on how to address code status in the most culturally sensitive and appropriate manner.
On a societal level, hospitals and government agencies should collaborate to devise ethical guidelines to tackle potential ventilator shortages, and make it compulsory to document code status with every admission. The Nepal Medical Council and the government should address legal issues regarding the documentation and implementation of code status conversations.
Covid-19 presents itself with an opportunity to accomplish a cultural shift by addressing these end-of-life issues, and potentially start a dialogue around broader goals of care and palliative care in our society. Although there are difficult conversations to have, even during 'non-Covid' times, patients and families should be given a chance to take charge of their outcomes. After all, the purpose of having these tough conversations early on is to empower patients and families to control what happens at the end, and to prevent societies and governments from making those decisions on the patients’ behalf.
As for Kopila, she was able to get out of the hospital and make a full recovery. Had she needed intubation and mechanical ventilation, she knew what she would have chosen—DNR—thanks to the doctors who took the time to explain to her the concept of DNR at the time of admission.