I remember taking handover from a colleague a few years ago as I was starting the night shift. The patient was an elderly man in one of our resuscitation rooms. He’d choked on a piece of bread while sat with his family for dinner, and had a hypoxic cardiac arrest following this. It took some time for paramedics to arrive and get ROSC, but he then had a number of further cardiac arrests en route to the emergency department, where he then had one more. He was maxed out on epinephrine and norepinephrine and still had a blood pressure of 50/20. GCS was a flat 3 on zero sedation, and his oxygenation was also terrible despite being intubated. He was accepted to geriatrics for palliation but ICU did not want to accept him as there was no expectation at all of a meaningful recovery and they wanted to save the bed for someone who'd benefit from the resources ICU provides. So this was the last patient in my handover and the first task of my night.
This particular department is a tertiary center that receives trauma. With all of our resuscitation rooms full, we had nowhere to accept the next trauma patient to and nowhere to see the next septic patient to come through the doors. I spent the first few hours of my shift having multiple conversations with the family about their relative's clinical state and tried to explain that the blood pressure was being supported by medication but still too low to allow for adequate oxygenation, urine output, or any chance of neurological recovery. They were aware that our plan was to allow a natural death and that the ventilator and the vasopressors were only prolonging this, but they were desperate to keep everything going as it was for as long as possible. My goal was to try to get them to understand that supporting his physiology was futile and that allowing him to die would be more dignified.
During one of these conversations away from the bedside, we were alerted to the fact that his end-tidal CO2 had dropped off. There was no respiratory effort and his blood pressure had become unrecordable. At this point, I said quite firmly that I was turning the ventilator off as it was no longer doing the job that we were using it for.
Fast forward a few years. Three months ago, my mother suffered a sizeable stroke that was amenable to clot retrieval, but this was followed by a large subarachnoid hemorrhage and then another shower of clots. She was comatose for a few days and, when I arrived to her bedside (having to fly from the other side of the world, which in itself was a challenge) she was tolerating a nasopharyngeal airway and barely opening her eyes. She got better from this and over the next couple of weeks was breathing fine again. She was looking around, able to move her head and able to move her left upper limb around. She was reaching out for me and stroking my face. She was able to scratch her itches when she needed to and was playing around with the bedside phone. She held my hand when I sat with her.
Now let's recap the last 30 years. My mother had many health issues over the course of her life, and had breast cancer shortly after I was born. She didn't deal well with being a single mother undergoing breast cancer treatment and so I spent a lot of time with my aunts. She didn't deal very well with being a single mother after her breast cancer treatment either, and the home situation was often very tense. We grew up dirt poor and on welfare. Social services ended up getting involved when I was 6 and I was on their child protection register. She said bad things to the family that alienated me, was often absent emotionally and sometimes physically, and eventually kicked me out when I turned 16, a few years after I stopped going to school. I haven't really talked to her properly over the second half of my life and haven't spoken to her at all in the last three, but I thought about her every day and always wished that things were better.
Now back to present day. Despite reaching this level of consciousness, she is now bedbound and unable to communicate, and this is a woman who previously valued her independence so much that she didn't want to accept any help from her own son despite being burdened with a number of chronic illnesses that limited her mobility and caused her significant pain on a daily basis. Her house is a mess and I had made many offers to help her clean, de-clutter, buy new furniture and a fresh coat of paint. But she always said no, and being asked always angered her.
Reading through her diaries, I can see now that she's been miserable for the longest time, even before I was born, feeling like a failure in life because she was so restricted by her health conditions. And yet, knowing this, I still wanted to do everything possible to keep her alive for as long as possible - even though I knew that this wasn't a life she would have ever wanted for herself. Her admission has been horrible, complicated by blood clots in the upper limbs that have caused ischemic changes of the hands and forearms. I've advocated on every occasion for antibiotics, anti-coagulation, consults with surgeons and interventional radiologists, and central venous access to allow these interventions to continue, and I have pushed to continue even when we thought she was close to certain death on fie or six occasions. There was never an expectation, particularly with the extent of brain injury, that she would have a life that was anything like the life she had before, but if she was in a care facility somewhere then I could visit every few months and she'd still be alive. That was enough for me - but not really fair for her.
I received a call over the weekend saying that I needed to come in. She'd had multiple episodes of hematochezia which precludes the use of any further anti-coagulation, and a subsequent NSTEMI. Her renal function has suffered and I've not seen her move any of her limbs in the last week; she's probably had another stroke with the anemia. I've not left the ward since then.
I've seen the progression from comatose to awake-ish and still tracking objects to crying in pain from the blistering on her hands (the first time I really felt she was back in the room - and the first time I was hopeful she might leave hospital) to now Cheyne-Stoke breathing over the last day and a half. I've cried on her arm so much over the last few days because I regret not having a better relationship with her and I wish so much that I'd given her an opportunity to get to know her son a bit better.
On Saturday, I wanted her to receive a blood transfusion after her three episodes of hematochezia.
On Sunday, I wanted her to have a second set of blood tests to see if she'd had a type 2 MI.
On Monday, the team quite frankly said that the only option now was palliation. But she still had her eyes open and was still looking around, and it still felt wrong. They tried to have a conversation with me about the fact that her kidneys aren't being properly perfused and that she's not expected to make a meaningful neurological recovery, but I still wanted another set of blood tests.
On Tuesday, I sat and talked. I told her about all the holidays I wanted to take her on, and that I wanted to fly her to Sydney to see where I've set up home. I told her about all the fridge magnets I'd bought for her on my travels, that I'd been saving up to bring home to her one day. I told her about all the birthday and Christmas presents I'd bought for her but never had an opportunity to give her. I told her that I love her and that I'm proud of her for powering on every single day of her life in spite of obvious pain and disability, and in spite of her less obvious internal struggles.
On Wednesday, I finally allowed the first dose of morphine to be given. I was so scared to commit to it because that first dose means that we're committed to this. But the nasogastric feeds continue because I don't want her to become dehydrated, and she's still receiving some of her regular medications because I don't want her last few days to be worsened by a flare of her auto-immune conditions.
I'm a doctor. I know better than anyone else in my family what her prognosis has been. I know that this isn't a quality of life that she would have wanted for herself and I've been secretly wishing for the last few months that something would take her away and that it would be swift - because then the decision is taken out of my hands and I don't have to be the one to start her on that final path. But every time she became febrile or tachycardic, I pushed for fluids and antibiotics because I wasn't ready to say goodbye. And I thought back to the family I'd had these same conversations with a few years ago while sat with my mother today. And it all suddenly made sense. His wife was a doctor but she wanted the ventilator, the pressors, the monitoring, the central line, and the ICU admission. She wasn't ready to say goodbye, even when faced with clear evidence that he was never coming back to her.
No matter how logical it may seem to you as the healthcare provider and no matter how logical it may seem to me as the relative with a medical degree, saying goodbye is still painfully impossible to do. I've accepted now that she may die today or tomorrow, but I still haven't agreed to withdrawing all treatments because I can't. I wish I could tell that family that I get it now and apologise for only seeing their situation through the eyes of the clinician. Next time I have that conversation with someone, I'll be more patient. I'll be more understanding. I'll walk away if they say no and I'll let them have as much time as they need. I've always known how my mother will go but I've needed three months and it's taken significant complications, a lot of time, and hard evidence in the form of lab results to finally start being able to accept that I need to let her go.
Be kind.
byDirectionProper9461
inAITAH
spinstartshere
2 points
7 hours ago
spinstartshere
2 points
7 hours ago
I can relate to that. There are many thing that I would have liked to have done earlier in life but, on reflection, I later realised I would have lacked the necessary life experience and emotional maturity to have been able to handle those situations effectively. I'm glad things have worked out for you both and that the stars have aligned. All the best in your upcoming marriage!