Category Archives: MEDICAL – DEATH

ALL THE TOOLS

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 –

No!

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.

HARSH HAND

Thank you for telling me what “palliative care” is. I appreciate your visit. You say you want to treat me like a whole person, not just a patient, and know what my wishes are for how I want to live the rest of my life. And that you can help me work with my care team. You have mentioned a lot of questions you have, like why I came to the US, and what family I have. My biggest concern is my son. You also asked what I hope for from treatment, even though you said it is not called treatment any more, but more like dealing with symptoms. Okay. Let me tell you so you can hopefully understand…

I came here because God had treated me with a harsh hand. I still don’t understand, although I try to humbly submit, that he would give my life over to a violent man when I was really still just a girl. I am a gentle person. I escaped after five years, and I took my baby with me, but his family took me to court, trying to take custody away, making all kinds of claims. The judge believed me and I got full custody, so God was with me then, but his family tried to kidnap my baby, and we had to flee the country.

That’s how I ended up here, working in the fields. And of everything that has been laid in my path, my son is the one good thing. I have had bitter times. Bitter, harsh times. You might not know that this is the third time I am fighting this cancer, and some of my friends have told me a lot of field workers get it. Then it gets into the bones, and the blood, and the brain. Mine is pressing on the spinal column, and I want to be able to walk again. Now they are saying I probably won’t be able to. And now you talk about comfort care.

My son is the light of my life. He still goes to school and studies hard. Neighbors bring him food or invite him to dinner while I am here. He works part time when he can find work without papers. No, no papers. We went to an immigration lawyer, but they said he missed being a dreamer by two months. So he has no path to citizenship. So he cannot go to college. And he is so bright! A local company chose him from his whole high school to give him an internship where he could work during high school and then keep working during college and have their help. But then they found out he doesn’t have a legal Social Security card and they said sorry but they are not allowed to have him work. It is against the law.

There is just me and him. Nobody else. So if I die soon, he is just a minor child without papers and not allowed to be a dreamer. He can get deported, and what will he do then? He cries on the phone and tells me not to leave him alone in the world, and I promise him I will keep fighting. He has been in the US since he was a baby. His father is violent. If my son is going to end up back where we started, then what was all this for? I thought the purpose of my life was to protect him and sacrifice so that he could have opportunities. Was it all given just to be taken away again? My mind is clouded with this.

You ask me what I want. I want you to tell the doctors to please not give up on me. I am literally begging. I am praying. Please hear me. I will humbly take any treatment – no matter how harsh. I will take it as a kindness. I will put up with any symptoms while they try and shrink my tumors. I will be strong and I will persist – just as I have taught my son. With one past treatment, my ears started bleeding. With another, I lost part of my vision. Now, I cannot walk. Okay. And I am in constant pain, but that is okay. Just keep me alive until my son is an adult. If he goes back now, he is ruined. And all my suffering would be in vain. Just keep me alive, if only for a year or two. Let me fledge my son from the nest. Let me see him fly, so I can die in peace. Tell the doctors not to give up on me.

LAUGHING

God doesn’t take people while they’re laughing. I told my husband, I’m not gonna die that easy. You can just quit worrying about it. But he can’t. He’s a serious person. He worries. Lucky for him he married a joker. We gotta laugh. We gotta laugh so we don’t cry, right?

He sat in the patient chair while I changed clothes for the procedure and when I sat back down the chair was so warm it was just crazy. So I told him, I said dang baby you sure have a hot ass, because this chair is crazy warm. He got all embarrassed and said for heaven’s sake, honey, keep your voice down! People can understand us! And I told him, they already know! They’ve got eyes, babe! Hahaha!

But the even funnier thing is it turns out these chairs have heaters. You know, like the seats in a new car? So the chair was actually heated with electricity. But I thought he had heated it for me himself with his body heat, and I was so impressed. Live and learn. You just don’t know. You don’t know a lot of things, and you don’t know what tomorrow will bring. Nobody does. Not even the almighty docs.

Did you know I was hospitalized for a couple weeks at the end of last year? Yeah, they pretty much gave me up. They said a bunch of things about the cancer and how aggressive it is and bla, bla, bla. One guy actually came in without an interpreter and he was like, don’t you want to go home and die comfortably? And I was like oh, hell, no! Are you kidding me? I don’t want to die at all. But if you yourself want to go home and die comfortably, I won’t be the one to stop you. That shut him up. He left the room pretty quick. Got him!

I think that must have been a student or maybe a social worker, I don’t know. Maybe he was in the wrong room. But I asked the older docs, you know, the gray-hairs, and they said they give me 6 to 12 months to live and that’s it. And I was like, wow, that’s very gracious of you, but you guys actually don’t GIVE anyone life, so get off it and get over yourselves. Jeez. Are you kidding me? Really? How arrogant! “I give you six months!” Haha, no you don’t. God gives ME life. And God gives YOU life. So get over yourselves.

Since I wouldn’t go home and die, and they couldn’t seem to kill me, they finally agreed that they would do another round of chemo and I lost my hair this time which I didn’t last time, so this must be better medicine. Which is good. What doesn’t kill you makes you fatter and I am gaining some weight back now. I don’t feel great but I am still kicking. I am looking forward to today’s test results. I have a good feeling about it.

I believe in miracles. I believe in life. I think if I was gonna die soon, I would feel it coming, like labor pains, right? Your body would give you some warning. I am not feeling it. I am not ready. I feel sure that God in His mercy would at least give me some dreams or signs. Would God really just kill me out of the blue? If so, then why give me a husband and kids, if I couldn’t see them through? I don’t believe in that. That’s why I keep fighting, and keep up my cheer.

I wish my husband would quit worrying about losing me. I told him, have you ever seen somebody that was really dying who was so cheerful? Have you seen someone really dying who is laughing and joking, and enjoying life, like I am? Do you think God is going to come take me in the middle of a laugh, in the middle of a good story, with my kids on my lap and you right next to us? No. God isn’t like that, babe, I told him. God doesn’t take people while they’re laughing. He isn’t that cruel. Maybe the devil does, but I’m not his customer. So let’s not worry. And may God’s will be done.

LET ME GO

When the social worker in the cancer service said she wanted a meeting with me, I figured it was about getting more vouchers for parking. Instead, she whipped out this pile of papers and told me straight up, it is time to plan for your funeral. My family was muttering, what the hell! Is she crazy? That was on Friday. All day Saturday, I cursed her and sent her to the devil. But by Sunday, I thought, you know, she’s right.

We all have to go some time. We all have to die of something. The forms had options for having a burial or getting burned, and I was really worried about getting burned, just in case I could still feel it and thinking about how bad it would hurt. And then when my auntie tried to send her husband’s ashes home, and there are all these rules for human remains, and it cost a fortune.  So it wasn’t more convenient that a regular coffin, it seems like.

But then there was a section that says you can have your body burned, you know, cremated, and then they make it into a glass heart instead of just giving you an urn with ashes in it. The ashes themselves are used to make the heart, you see? And I was thinking, nobody is going to stop my daughter if she happens to travel to my home country and has a glass heart in her suitcase. They are not gonna know that it is me.

Of course I mean my body. Because I want my spirit to fly free. I have told my family, don’t try and hold me back. I’m gonna be so ticked off if you try to keep me here.  I am really worried about it, because we have all these things our people do to trap a departing spirit, like burying the loved one’s cross in the yard, and other rituals.  But I don’t think a glass heart could hold me back.  I don’t think it would trap me here.  I don’t want to be caught between worlds.

Yeah, they don’t like me to talk about it like this, I understand.  And hey, of course it’s harder for the ones left behind.  I know. I lost my own mom when I was just eleven years old. But like I told them, I’ll see you on the other side. I’ll be waiting for you there. But like it or not, you have to let me go.  So I am thinking of the glass heart, and if it breaks, oh, well.  At least it was lovely for a while.  That’s all we can ask, right?