While some of us have been celebrating our various winter holidays, weighing travel plans and deciding which gatherings are “worth the risk” others are having a vastly different experience. Others have been struggling with COVID as more than an idea, because they are hospitalized with the disease. Patients on a ventilator can no longer speak, and those interpreting sessions on my video screen become a group meeting, with windows into five or six households and family members wandering on and off screen with questions and tears. Hoping for a miracle from the doctor but hearing hard truths and sometimes confusing euphemisms instead:
I know this is hard but I want you to know that we have used all the tools in our toolbox. And your family member continues to decline. Even in the last few days, his fever is up and his blood pressure is dropping. He would not be able to breathe without the ventilator. We checked to see if he may have developed a new infection but we didn’t find anything so we think it is his – final decline. His health is – declining. Questions so far?
Yes. Why don’t you just poke his lungs again and drain them like you did before so he can breathe easily again? Get the water off the lungs?
Good question! Unfortunately, he does not have any liquid in the lungs, so there is nothing to drain. The reason he cannot breathe on his own is because of the damage to his lungs caused by COVID and that not reversible because it causes scarring and stenosis, or stiffening, of the lung tissue, and that makes it hard to breathe if you cannot expand your lungs.
Let me add that when we say we have used all the tools in our toolbox, I want to assure the family that we have done everything in our power, and you know we chase the numbers – we follow the science and the statistics, and every time there has been an advance in COVID treatment, we are right there and we have implemented it. But when we weigh the risks and benefits of each new treatment option, we find that we have nothing left to offer him that would ultimately benefit him. Do you understand so far? Any questions?
Yes. When you showed us his face for a minute, it was black and blue, and his eyes are swollen shut, it seems. Why is his face so bruised and swollen? How did he get hurt? Did he fall?
Great question! That’s what I was just talking about, how the treatments and techniques we have to help him, like rolling him onto his stomach to ease the breathing, are not working anymore. The pressure on his face when he cannot move at all caused his face to get hurt just by lying there, so we had to turn him over to let his face heal, even if it is harder for him to breathe. Otherwise he will get pressure sores on his face and he can get a new infection. There will be more and more things like that. Here’s another. The medicine to raise his blood pressure, if we up the dose, causes painful twitching and cramping in the fingers and toes, so it doesn’t seem worth doing at this point. Questions or comments?
Yes. We do understand you have done what you could and please know that we are very grateful. We think you have done a great job and your team has tried everything you know of. We understand that sometimes a disease takes over and the patient goes downhill but please know that we are still hoping for a miracle. Because like all the rest of us, he is in God’s hands.
Absolutely. And it is more true than ever because we have honestly given him everything we can, every advanced treatment, using all our equipment and basing our practices on the latest research. But he is in decline, and outside of a miracle, we are asking you to consider that we now presume him to be at the end of his life. Any questions? This is for his brother – sir, this is your first time at our weekly meeting, and you have not said anything yet. I know this is new. Might you have any questions?
Yes. Can’t you just give him a medicine that would make him better?
Sadly, we cannot. There is no medicine that can make the lungs come back – the damage from COVID is permanent. Because it is scar tissue. If you have ever had a scar, you know the scar stays and never changes back to normal tissue. That is why we suggest that we change our focus and simply try to keep him comfortable and avoid as much suffering as possible – for as long as he lives. For example, why keep drawing his blood for studies if we are not going to change the treatment plan? He could have less shots, less blood draws, less studies that are invasive or painful. We can change our focus from curative treatment and can keep him comfortable as he declines. Other questions?
Yes. Does keep him comfortable as he declines means you just watch him – die? You just – take him off the breathing machine and don’t give him any medicines?
Oh, no! Thanks for asking! Not at all! We can keep him on the ventilator and keep giving him pain relief. We can use what we are using now for blood pressure. But we will not increase the blood pressure medicine or add any new treatments, because there aren’t any that would help him. Just like turning him over in bed. That is not helping him any more. But we will support his breathing – we don’t want him to struggle for breath. And we will give him the pain meds – we don’t want him to have to suffer more than he has to. Questions?
Yes. We know he cannot talk because he is on the ventilator. But do you think he is aware, for example, of the people who go in to take care of him? Do you think he can hear and see them? Do you think he is aware?
No. We do not believe he is aware, for two reasons. One, we have to sedate any patient that is on a ventilator so they can stand to have the breathing tube in and don’t struggle. And secondly, he has been so very sick for so very long, that he is not really awake or aware at this stage. Another topic, and this is a hard one: we talked with the two grown children about removing the breathing tube. I want to be clear that if we remove the breathing tube, he will likely die very soon – within minutes. If we do not remove the breathing tube, he will continue to decline for days or even longer, until the next complication arises.
Excuse me, but what kind of complications do you expect? You have watched people with COVID for almost a year now. What complications do you mean, like an infection?
An infection is one likely complication. That is what we suspected when his blood pressure dropped so low and his fever went up, but when we didn’t find any infection, we realized that he was likely reaching end of life decline. And we expect that to continue. But other complications from COVID at this stage could be say a blood clot that can form and travel to heart or brain, causing heart attack or stroke. Lung collapse from being on the ventilator for so long, because the ventilator causes lung damage over time, especially at this high setting. A breakdown of the skin such as we already see on his face, simply from being bedridden, what we call pressure ulcers, can develop and become infected. And of course other organ failure – kidneys, liver, heart… This is a lot of information and we don’t need any answers today about any next steps. You can take time to think it over, talk it over, but we don’t believe, I hate to say it, we too would love a miracle, but we don’t expect that your family member will leave this hospital alive. We cannot predict the day and hour, but we fully expect that he will die here. He will not leave here alive. We are so sorry. Questions?
Can we visit?
We already spoke to the two grown children about this – due to COVID, we have very restricted visits. Even for patients who are – not expected to live very long, or to recover. We can only allow two visitors, one time, for one short visit, to say goodbye. We presume that will be his two children. We are so sorry. Now, this is for the children – you don’t have to make any final decision about – end of life care, or removing the ventilator –
You don’t have to make any decision like that before you can visit. Just so you know.
So we can visit first, see how he is, talk to him, see if he responds, and then decide? And then if we decide to take him off – the machines, we can come back for that?
No. I am sorry. You can only come one time. So you can either come first, or come when we remove the ventilator, if you decide to do so. But you won’t have a good idea or really any idea of when he might pass if he remains on the ventilator. So think it over and we can talk in a couple more days. Of course we will call you if anything changes. But feel free to make your visit at any time, irrespective of making a final decision. You can come when you decide. You may wish to come soon.
We would like to offer your family an opportunity now to visit him with our video remote – we will set up the camera at the bedside and you can all stay on your phones – we will release the interpreter and we will hang up ourselves and the nurse will leave the room and then you can talk and pray freely and have a bit of privacy to visit with your family member. Okay? We are so sorry! We really used all the tools… here he is.
Before they cut me off, I hear the family member voices cross each other as they call out to their sleeping family member through the ether: Oh, dear Uncle! We never thought it would come to this! – Daddy, I am not ready for you to go – Oh brother, my soul is rent asunder. God is indeed mysterious! – The nurse thanks me and reaches for the disconnect button and then there is silence.