by Stephen P. Wood, MS, ACNP-BC
I stood facing the iPad attached to a rolling stand punching in the phone number of the young granddaughter of my intensive care unit patient. He arrived less than twenty-four hours before. I had taken the call the day before from the outside hospital emergency department and the story was grim. This was a seventy-six-year-old male who had acute myeloid leukemia, hypertension, as well as a history of congestive heart failure. He had been sick for the past two days with a fever, a cough and weakness. He arrived in the emergency department breathing at a rate three-fold the normal, and his oxygen levels were lower than they would be on top of Mount Everest. He was intubated and on a ventilator. His blood pressure was low, his kidneys and liver were failing and all the biomarkers we use to evaluate the severity of COVID infection were high. We weren’t confident that he would be stable enough for transfer to our dedicated COVID intensive care unit.
I punched in the phone number, hit the movie camera icon and the screen came alive. His wife, tearful and gripping a wad of tissues sat in the middle, flanked by her three children. In the back were as many grandkids as they could squeeze in. In a muffled voice through my N-95, a surgical mask, and hard plastic face shield, I asked if they could hear me. After a few adjustments we both had sound and video. I had spoken to the family by phone for our plan of action. They decided that we would extubate first and then the family would watch as their loved one died. No one from his family would be there because of the restrictions on visitors. This technology would be the best we could do. Everyone understood, this was the new norm.
I rolled the iPad over and for the first time since he left the other hospital, his family was able to see him. I asked if I could hold his hand for them and they all nodded in agreement. His breathing was uncomfortably labored. This is one of the worst parts of COVID. It attacks the lungs filling them with fluid. The respiratory distress, the persons struggle to pull air into their lungs, is painful to see. I could not watch their faces. I turned away from the screen as I heard the first howls of despair emanate from the speaker. He died within minutes.
I have attended a lot of deaths and by the nature of my work, many of them unexpected. It is never easy but being there to help comfort a family, to allow them those last few minutes with their loved one, does help. This was just awful. This was as detached as we could possibly get: The last view of their loved one over a grainy video. Many hospitals do the same. Visitors are restricted, even in the setting of end-of-life. It is meant to protect the visitor as well as the staff, in-line with self-quarantine and social distancing measures. Shortages of personal protective equipment (PPE) has meant that it was reserved for healthcare providers and the simple solution of suiting up families may not be feasible.
I thought a great deal about this after my shift had ended. I thought of his wife. They had been together for fifty-four years. I am sure she wanted nothing more than to be there to hold his hand, stroke his head and give him a kiss while he passed. The argument that we were protecting her is valid. Then again, she lived with this man. They shared food, utensils and according to her daughter they still shared a bed. The grim facts were that If she didn’t already have it, she was likely to have it soon. Our hope was that she did not, and if she did, it would be the mild disease we see far more often. Time would tell.
What I have to say will likely be met with a great deal of concern and criticism. It is a controversial stance and one that even as I type, realize I may regret later. PPE is a scarce resource and should be prioritized to providers, including those working in nursing homes, in emergency medical services and other essential jobs. With that in mind, I think that there should be consideration for reserving some PPE for families so that we can offer the same type of empathy and care that we provided before this pandemic.
End-of-life care is an intimate process. From an ethical prospective, there is potential harm in not letting families participate in this care. It took years to convince providers to include families in the process of dying and now we are back again to keeping them out. I have no doubt, these families will feel a void, will have guilt, and may have extended periods of grief because they did not get to be with their loved one as they died. Even during the Ebola epidemic, a disease much more virulent than SARS-COV2, family presence was allowed in certain circumstances, using closely monitored safety measures and protocols.
As healthcare providers, we have a responsibility to provide not just for patients but also their families. There is a need to develop safe, evidence-informed processes to help bring the family back in the room in the setting of end-of-life care. This cannot be an entire family, but certainly could be one member. There will need to be guidelines and, in some cases, it simply won’t be permitted because of risk. An example might be elderly family members or those with co-morbid conditions. It may need to be restricted during shortages of PPE as well. One thing that has emerged from this pandemic however, is that we are resilient and resourceful. For example, there are people who are making N95 level masks with 3D printers. Scientists are looking at safer ways to sterilize and re-use PPE. We can find a way to let families “back in”, when feasible, in a thoughtful, safe and caring way.