Reflections on Patient Care
Shhhhh. Don't disturb the calm. It is lovely and peaceful and I want to hang onto it for just a while longer.
The funny thing about acute dialysis is that it goes in cycles. We are slammed and then it's quiet. This week was a quiet week. I actually had a couple of hours where I had nothing to do and felt bored. I haven't felt bored in something like 10 years. I was on call two days in a row but only had one patient, and it was early in the evening so I was home by 11. I volunteered to take and add-on on my day off, then worked the next two days, including today. Every case was smooth as silk. I set up the machine, hooked up the patient, sat down to read, and suddenly they were done. This is the job I signed on for.
When I first started doing this job I was chatty and friendly with the patients and family. Over time I've had to take on a more aloof and distant personality. If I engage the patient or family too much they wind up talking to me through the whole treatment. It's not just that I can't read my book. They start looking for an emotional connection. I realized I wasn't handling this right when for several weeks in a row a patient or family member was giving me their phone numbers and asking me to call them. I realized I wasn't keeping up a professional boundary.
I usually chat with the patient a bit to pass the time and calm them while I'm getting set up. I also do this to find out where they are in the process, how much they know about their illness and so on. When a person goes into renal failure they are often blind-sided. Even if they had been warned that it's coming, they are usually deep in denial and are just as much in shock as someone who had no idea it was coming. They are given a lot of information at once and have to be told things over and over since it doesn't sink in at first. The doctors don't spend a lot of time with them and the nurses are too busy to really explain things, so I try to make it my job to fill them in and answer their questions. My challenge now is figuring out how to get them the information they need without them feeling that I'm somehow responsible for them.
Denial is a powerful force, and I've known this for years, but I'm still amazed at how powerful it can be. I had a case this week that was profoundly sad.
The patient has colon cancer. They found it in April but most likely it has been fulminating for a year or more. The cancer has spread to his liver, bones and brain and he is on a feeding tube. When people have cancer it's not the cancer per se that kills them, but what the cancer does to the body that does them in. They more or less starve to death, or the tumor gets so large that organs can't function well enough for the person to stay alive. One of those organs is the kidney. So when they called me in to dialyze this patient I was wondering why since often when a patient is dying of cancer, when the kidneys fail that's usually the start of a chain of events that leads to their demise.
When I walked into the room it was filled with family members, merrily chatting, talking, lauging and eating a buffet of food that had been sent to them from concerned friends and other family. As I was setting up the family cleared out and I finally got a good look at the patient. I've seen enough dying patients now that I recognize it. Skinny, frail, all the color drained out, babbling insensibly from a combination of morphine and metabolic waste building up in the brain. I introduced myself and asked questions as a way of figuring out his mental status. He didn't answer questions appropriately - by that I mean he couldn't tell me his name, where he was, his wife's name, and so on. His babbling was punctuated by shouts and cursing. This doesn't bother me. It's pretty common with dialysis patients.
As I got busy hooking him up I could tell he was talking to people that I couldn't see. I recognize this as him talking to people "on the other side". He was talking to his mother. Yeah, he isn't long for this world.
Gradually family members filed back into the room. Their behavior was strange to me. The wife was talking to him as if nothing was wrong. She kept trying to give him hard candy - remember, he's on a feeding tube. I stopped her and said "I know he might like that but I'm concerned that he might choke on it while he's lying down." I realized she had no idea how bad off he was. She didn't notice that this guy is so far gone that there's no way he could eat a piece of candy without it killing him.
The daughter showed a little more concern and seemed more realistic about the state he was in. She sat next to me so I struck up a conversation with her. I started my usual line of questioning; how long has he been on dialysis, why is he in the hospital, how long ago did they find the cancer, what are they doing for it, why is he on a feeding tube? The daughter is getting ready to start nursing school so has a little bit of medical knowledge and seemed a damn sight smarter than her mother.
It turns out that when they found the cancer it was so advanced that they couldn't even get the scope past the tumor in his colon. The doctor immediately put in a feeding tube and started him on chemo. He had just finished his latest round. The daughter told me the doctor told the family that he had "lesions" on his liver, brain and bones. My mind is screaming "OH MY GOD, bony mets, brain mets, liver mets. This guy is a goner" but that the doctor wouldn't call it cancer or metastasis, just lesions.
I asked if they had been referred to hospice and she said "no, they won't send us to hospice until my parents agree to stop chemo altogether. And of course, my Mom refuses. She keeps saying they should do everything they can for as long as possible." In this day and age where people sue doctors at the drop of a hat, the doctors are taking their cue from the family and doing "everything" that can be medically done. Meanwhile the family is looking to the doctor for answers and thinking that the doctor knows what is best and so won't ask questions or look at alternatives.
It made me so sad to see this. This family needs hospice so very badly. They need someone to sit down and have a frank discussion with them about his imminent death, funeral arrangements, grieving, pain control, just everything. I looked at the mother and she is completely oblivious to how bad this guy is. When he dies it will be a complete shock to her and I'm willing to bet it's one from which she will never recover. They need time to look into each others eyes and tell each other how much they mean to one another, how much they love each other and how they will miss each other. Instead what will happen is they will keep going on doing "everything possible" to keep him alive, and when he goes he will go hooked up to resuscitation equipment, and trach tube crammed down his throat and someone on top of him breaking his ribs doing chest compressions.
Wouldn't it be better if they could take him home, get in bed with him and hold him while he dies? Woudn't they feel better comforting him, swabbing his forehead with a cold washcloth, dabbing his cracked lips with lip balm, singing to him, praying with him, looking at photos, crying, holding hands, kissing his cheek, letting him touch the grandbabies one last time? Wouldn't it be better that he could say goodbye to them while he can still talk, while he still knows who is and who they are?
But no. That's not how it will end. My heart breaks for them but I have to maintain a professional, objective distance. I can't say too much because if things go differently than what I say it could, I could get sued.
But you know what? I figured "screw it" and told the daughter that I don't think her Dad is in very good shape. I encouraged her to try and talk to her Mom about some alternatives to this. She said she had been trying to get her Mom to see how bad it is but she refuses to see it. I commended the daughter for being so alert to what is happening and for being an advocate for her father. I said that maybe she could use her cache as a future nurse to move her Mom in a different direction, since Mom kind of sees her as being the medical expert in the family.
I know I crossed a professional boundary, but somehow I think I did the right thing for this family. I know this won't be the last time I will see a situation like this. Over time maybe I'll know better what to say and how to lead them to the help that they need.
The funny thing about acute dialysis is that it goes in cycles. We are slammed and then it's quiet. This week was a quiet week. I actually had a couple of hours where I had nothing to do and felt bored. I haven't felt bored in something like 10 years. I was on call two days in a row but only had one patient, and it was early in the evening so I was home by 11. I volunteered to take and add-on on my day off, then worked the next two days, including today. Every case was smooth as silk. I set up the machine, hooked up the patient, sat down to read, and suddenly they were done. This is the job I signed on for.
When I first started doing this job I was chatty and friendly with the patients and family. Over time I've had to take on a more aloof and distant personality. If I engage the patient or family too much they wind up talking to me through the whole treatment. It's not just that I can't read my book. They start looking for an emotional connection. I realized I wasn't handling this right when for several weeks in a row a patient or family member was giving me their phone numbers and asking me to call them. I realized I wasn't keeping up a professional boundary.
I usually chat with the patient a bit to pass the time and calm them while I'm getting set up. I also do this to find out where they are in the process, how much they know about their illness and so on. When a person goes into renal failure they are often blind-sided. Even if they had been warned that it's coming, they are usually deep in denial and are just as much in shock as someone who had no idea it was coming. They are given a lot of information at once and have to be told things over and over since it doesn't sink in at first. The doctors don't spend a lot of time with them and the nurses are too busy to really explain things, so I try to make it my job to fill them in and answer their questions. My challenge now is figuring out how to get them the information they need without them feeling that I'm somehow responsible for them.
Denial is a powerful force, and I've known this for years, but I'm still amazed at how powerful it can be. I had a case this week that was profoundly sad.
The patient has colon cancer. They found it in April but most likely it has been fulminating for a year or more. The cancer has spread to his liver, bones and brain and he is on a feeding tube. When people have cancer it's not the cancer per se that kills them, but what the cancer does to the body that does them in. They more or less starve to death, or the tumor gets so large that organs can't function well enough for the person to stay alive. One of those organs is the kidney. So when they called me in to dialyze this patient I was wondering why since often when a patient is dying of cancer, when the kidneys fail that's usually the start of a chain of events that leads to their demise.
When I walked into the room it was filled with family members, merrily chatting, talking, lauging and eating a buffet of food that had been sent to them from concerned friends and other family. As I was setting up the family cleared out and I finally got a good look at the patient. I've seen enough dying patients now that I recognize it. Skinny, frail, all the color drained out, babbling insensibly from a combination of morphine and metabolic waste building up in the brain. I introduced myself and asked questions as a way of figuring out his mental status. He didn't answer questions appropriately - by that I mean he couldn't tell me his name, where he was, his wife's name, and so on. His babbling was punctuated by shouts and cursing. This doesn't bother me. It's pretty common with dialysis patients.
As I got busy hooking him up I could tell he was talking to people that I couldn't see. I recognize this as him talking to people "on the other side". He was talking to his mother. Yeah, he isn't long for this world.
Gradually family members filed back into the room. Their behavior was strange to me. The wife was talking to him as if nothing was wrong. She kept trying to give him hard candy - remember, he's on a feeding tube. I stopped her and said "I know he might like that but I'm concerned that he might choke on it while he's lying down." I realized she had no idea how bad off he was. She didn't notice that this guy is so far gone that there's no way he could eat a piece of candy without it killing him.
The daughter showed a little more concern and seemed more realistic about the state he was in. She sat next to me so I struck up a conversation with her. I started my usual line of questioning; how long has he been on dialysis, why is he in the hospital, how long ago did they find the cancer, what are they doing for it, why is he on a feeding tube? The daughter is getting ready to start nursing school so has a little bit of medical knowledge and seemed a damn sight smarter than her mother.
It turns out that when they found the cancer it was so advanced that they couldn't even get the scope past the tumor in his colon. The doctor immediately put in a feeding tube and started him on chemo. He had just finished his latest round. The daughter told me the doctor told the family that he had "lesions" on his liver, brain and bones. My mind is screaming "OH MY GOD, bony mets, brain mets, liver mets. This guy is a goner" but that the doctor wouldn't call it cancer or metastasis, just lesions.
I asked if they had been referred to hospice and she said "no, they won't send us to hospice until my parents agree to stop chemo altogether. And of course, my Mom refuses. She keeps saying they should do everything they can for as long as possible." In this day and age where people sue doctors at the drop of a hat, the doctors are taking their cue from the family and doing "everything" that can be medically done. Meanwhile the family is looking to the doctor for answers and thinking that the doctor knows what is best and so won't ask questions or look at alternatives.
It made me so sad to see this. This family needs hospice so very badly. They need someone to sit down and have a frank discussion with them about his imminent death, funeral arrangements, grieving, pain control, just everything. I looked at the mother and she is completely oblivious to how bad this guy is. When he dies it will be a complete shock to her and I'm willing to bet it's one from which she will never recover. They need time to look into each others eyes and tell each other how much they mean to one another, how much they love each other and how they will miss each other. Instead what will happen is they will keep going on doing "everything possible" to keep him alive, and when he goes he will go hooked up to resuscitation equipment, and trach tube crammed down his throat and someone on top of him breaking his ribs doing chest compressions.
Wouldn't it be better if they could take him home, get in bed with him and hold him while he dies? Woudn't they feel better comforting him, swabbing his forehead with a cold washcloth, dabbing his cracked lips with lip balm, singing to him, praying with him, looking at photos, crying, holding hands, kissing his cheek, letting him touch the grandbabies one last time? Wouldn't it be better that he could say goodbye to them while he can still talk, while he still knows who is and who they are?
But no. That's not how it will end. My heart breaks for them but I have to maintain a professional, objective distance. I can't say too much because if things go differently than what I say it could, I could get sued.
But you know what? I figured "screw it" and told the daughter that I don't think her Dad is in very good shape. I encouraged her to try and talk to her Mom about some alternatives to this. She said she had been trying to get her Mom to see how bad it is but she refuses to see it. I commended the daughter for being so alert to what is happening and for being an advocate for her father. I said that maybe she could use her cache as a future nurse to move her Mom in a different direction, since Mom kind of sees her as being the medical expert in the family.
I know I crossed a professional boundary, but somehow I think I did the right thing for this family. I know this won't be the last time I will see a situation like this. Over time maybe I'll know better what to say and how to lead them to the help that they need.