The importance of end-of-life care decisions during Covid-19

In May, my family in Lahore was in a home lockdown by order of the state. There had been a suspected Covid-19 patient in the house who was transferred to a hospital. While that patient was quarantined, the whole family was ordered not to leave the house. The anxiety among my family members and myself increased tremendously as we waited for the Covid-19 test result. Everyone was particularly worried about the wellbeing of my old and frail father. I was particularly worried that we had not discussed his end-of-life care wishes with him. I could not muster the courage to bring myself to raise the topic with him during the long two days of waiting for the results of the suspected Covid-19 patient.

Fortunately, the result was negative. Days later, however, I asked him if he had a plan in case his health suddenly deteriorated. He told me that he would like to stay at home and get medical treatment there. This talk was anxiety provoking and made my family nervous. But as time passed, everyone calmed down, and, as a family, we now know his wishes and feel better prepared.

This sudden, potentially life-threatening situation contrasted with the time two years earlier when we had to make end-of-life care decisions about my mother who was suffering from terminal pancreatic cancer. Family members discussed the best care plan with her and, in accordance with her wishes, we opted for a home palliative care service. The decision was tough and the execution was painful. Many times, as a son, I wanted to extend her life by taking her to the hospital for electrolytic management or for the treatment of infections. We resisted the impulse, made sure she was comfortable, and, as a result, she spent the last few weeks of her life at home surrounded by her family and friends. Now looking back, we are extremely content with the home hospice decision. In my talk with my father, he gave me the feeling that he trusted us to make equally good decisions about him when it came time for his eternal journey,

Palliative care is a relatively nascent concept in Pakistan. This type of service is extremely limited and available only at a few institutions. Seven years ago, in a global survey, Pakistan had one of the worst palliative care services in the world. Approximately one in 90 million people had access to such services. In my personal experience, the situation has improved slightly in the past few years. Even so, medical students, clinicians and physicians do not usually receive information about end-of-life and palliative care issues in their education and training. Clinicians also feel anxiety about discussing end-of-life care issues with their patients. By their very nature, the subjects of death and dying are not easy to talk about. Due to the lack of education, resources, and clinician discomfort, patients and their caregivers are poorly informed regarding the implications of palliative care.

Even during calm times, it is hard to discuss end-of-life care plans with loved ones. We usually leave these discussions for the future. The Covid-19 pandemic, however, has made us realise that for millions, the future has arrived already. This provides the opportunity to use this situation as a way to gently open up end-of-life care issues for discussion. While these discussions are important for all adults, during this Covid-19 pandemic they are particularly important for people with underlying serious medical conditions –such as cancers, diabetes, severe heart and lung disease – as well as for the elderly.

Unfortunately, the concept of an advance directive or living will is not popular or common in Pakistan. Consequently, a person’s end-of-life care wishes may not be known by other family members, leaving them to have to make tough decisions by themselves when the time comes. At a minimum, it would be advisable for persons with medical conditions and older adults to assign another family member(s) to be the medical power of attorney and to discuss with that person such issues as resuscitation efforts or advanced life-saving measures such as being placed on a mechanical ventilator. What would that person like done if he or she has a stroke and loses cognitive ability? What if life-saving surgery might extend life for a year, but entail staying in the hospital for one month? Ideally, these wishes should be recorded in a clear written document.

During Covid-19, these discussions are important for all adults but particularly for people with underlying serious medical conditions such as cancer, diabetes, and severe heart and lung disease, as well as being elderly. Depending on an individual’s physical circumstances, the answer to the questions about end-of-life care could be very different. Palliative care wishes are highly influenced by a variety of different factors. For that reason, there is no one-size-fits-all treatment strategy. The best practice is to discuss these issues when one is safe and healthy.

For the past few months, the Covid-19 pandemic has made me think about my own end-of-life care decisions. I am young, I am healthy and I am working at one of the best medical hospitals in the world. If I contract a coronavirus infection, my plan is to follow medical advice. I would like to live; I have certain personal responsibilities and professional goals I would like to accomplish during my lifetime.

It is never easy to let go of a loved one. But a difficult conversation can help to determine their wishes and be better prepared to help them on their eternal journey. If we do not let someone who cares for us know our wishes, then that person may be forced to make decisions under huge stress and possibly with later regret. We can use this time to start a simple conversation, saying, “If. unfortunately, you get a coronavirus infection, is there anything you would like me to know?” Once you break the ice, that may open the door to further sensitive discussions.