It's hard to imagine a worse reality. She had contracted some sort of encephalitis. Absolutely regular 23 year old, living life fully, when suddenly she became ill with headache, sleepiness and fevers. By the time she was admitted to the hospital, most of her organs were failing. Her kidneys shut down, requiring dialysis and her liver began to fail.
Much more troubling than these major organ problems however, was the damage occurring in her brain. After the onslaught to her body was over, she was blind and hearing impaired. Even the typical sensations of touch seemed to be misinterpreted now by her brain.
She was in the hospital for months. Nothing improved.
Can you imagine what reality was to her? I try, and it's horrifying; To not be able to communicate with anyone... to be in constant darkness and if sound does filter in, the brain can't understand what the sound means!
It was in this condition that I met her. Sitting in her room at the hospice house, she'd all of sudden cry out, "Is anyone there? Can you hear me? Help me, please! I'm here, I'm here..." But none of my words or even touch seemed to register. She was in complete isolation. I wasn't surprised then when the crying out turned to, "If no one's out there, I wish I could just have a gun, and let this be over"
I had no gun. But mercifully the family had, after months of this crying out, opted not to continue dialysis or treat new infections. It was only a matter of time then before her wish to no longer be living in such a frightening reality would be over.
For the record: If I am ever blind and deaf and trapped in my brain, please don't try to keep me alive
Saturday, July 4, 2009
Saturday, June 13, 2009
Choices
It was a bittersweet moment. She received her acceptance letter to medical school the same week her pregnancy test read "positive". If there hadn't been 2 previous miscarriages, perhaps there would have been no real decision. But, knowing that motherhood was in her blood, she boldly declined her spot.
As the years went by, her three healthy children granted her an indescribable joy. However, there was always that nagging thought, "Could I have done both?". Her husband heard the regret often and tried his best to encourage her, but it seemed to eat into everything she did. She was convinced she'd made the wrong choice.
Then the unthinkable; she was diagnosed with an incurable cancer. Bravely she fought through the vomiting, weight loss and fatigue. Ironically, it was in the stillness of her illness that she was able to finally announce to her family resolutely, "I did make the right choice".
As the years went by, her three healthy children granted her an indescribable joy. However, there was always that nagging thought, "Could I have done both?". Her husband heard the regret often and tried his best to encourage her, but it seemed to eat into everything she did. She was convinced she'd made the wrong choice.
Then the unthinkable; she was diagnosed with an incurable cancer. Bravely she fought through the vomiting, weight loss and fatigue. Ironically, it was in the stillness of her illness that she was able to finally announce to her family resolutely, "I did make the right choice".
Tuesday, May 12, 2009
The Change
I wonder when things change? At what age do we start using pills for pain? Oh sure, even with little ones we dose out tylenol occasionally- but that's usually for fevers and not primarily pain. When I child whimpers from a fall, or even cries out loudly with an "owie" we reach out our arms naturally to draw them to us. Who hasn't fixed a minor scrape with a magic kiss? For those middle of the night terrors, we snuggle and bring them close. When they get anxious about trying something new, we give them a hug and gently encourage. Always though, we touch, grab them and pull them close.
Somewhere a long the way it changes. We stop touching and start medicating. Here's a pill for the pain, a tablet for your worries... No more hugs, no more snuggles. Wouldn't it be interesting if doctors treated patients like infants? Drew people in, instead of pushing them away with medicines. I wonder if there would be more success treating pain and anxiety if our initial response was to reach out in embrace?
Tuesday, April 7, 2009
The system
The "system" always gets flak. But sometimes, like today, it actually does good.
Candice is here dying of ovarian cancer. Her one and only beloved son has been behind bars for much of her illness. When Candice came to stay with us, and we knew her time was limited, a letter was sent asking permission for a last visit by her son.
And the "system" consented.
Today, dressed in orange, shackles around his wrists, and accompanied by 2 guards, the son arrived for his 2 hour visit. His mother, who has lain with eyes half open in a blank stare without a single word for the last 2 days and blood pressure readings hovering on nonexistent, became suddenly alive when he entered her room. His hand cuffs were removed and he hovered at her bedside holding her hand as she mustered up the strength to say "I love you, I forgive you" all in one breath.
The visit was mostly silent, he crying...she hovering between here and beyond. But he made it, and she waited....just for him, so she could say goodbye. Thank goodness the "system" allowed it to happen.
Candice is here dying of ovarian cancer. Her one and only beloved son has been behind bars for much of her illness. When Candice came to stay with us, and we knew her time was limited, a letter was sent asking permission for a last visit by her son.
And the "system" consented.
Today, dressed in orange, shackles around his wrists, and accompanied by 2 guards, the son arrived for his 2 hour visit. His mother, who has lain with eyes half open in a blank stare without a single word for the last 2 days and blood pressure readings hovering on nonexistent, became suddenly alive when he entered her room. His hand cuffs were removed and he hovered at her bedside holding her hand as she mustered up the strength to say "I love you, I forgive you" all in one breath.
The visit was mostly silent, he crying...she hovering between here and beyond. But he made it, and she waited....just for him, so she could say goodbye. Thank goodness the "system" allowed it to happen.
Monday, March 16, 2009
Back to work: a reminder
The chaplain was just finishing his prayer for the woman who had died. The family was huddled around the bed. Curled up in bed with her was the woman's husband, staring at her face and mouth, reminding me of the way a new mother takes in every detail of her newborn from only inches away. My eyes drifted back to closed as the prayer neared its end, when suddenly a loud moan started. The moan, coming from her husband, quickly escalated to a panicked scream as he began to yell "She's not breathing...she's not breathing", His eyes saucer wide drilling holes into her half open mouth. Although she'd passed away 20 minutes before, the reality was just hitting him.
The room erupted into emotion as someone near the husband grabbed him in a bear hug whispering to "let her go". He seemed in a trance, having an emotional seizure of sorts. Even though I already had tears running down my face it wasn't until he then embraced her saying out loud, "One more, let me hold you one more time" that I lost it. Something cracked in my self-made wall of distance and for a moment I realized what it might feel like to have your very last embrace with someone you love.
Another hard reminder on my first week back to work, how precious our time is with those around us.
The room erupted into emotion as someone near the husband grabbed him in a bear hug whispering to "let her go". He seemed in a trance, having an emotional seizure of sorts. Even though I already had tears running down my face it wasn't until he then embraced her saying out loud, "One more, let me hold you one more time" that I lost it. Something cracked in my self-made wall of distance and for a moment I realized what it might feel like to have your very last embrace with someone you love.
Another hard reminder on my first week back to work, how precious our time is with those around us.
Monday, December 15, 2008
Confession
I wish I could always claim altruism when taking care of dying patients. But the truth is, there are times other priorities in my life try to stake a claim in my work.
This happened last week at work. I had met with a lovely family to discuss our plan for their loved one who was on a ventilator, not responding, and likely permanently stuck like this. He'd had the most aggressive care possible, but it seemed brain damage was irreversible. In the family meeting they told stories of his great accomplishments and were very clear that living a life on a vent with artificial nutrition through a feeding tube in his stomach, in a nursing home somewhere, was not something he would have wanted.
The decision was made then to withdraw the aggressive measures in place. We'd remove the ventilator and antibiotics and support him as his body transitioned to a dying process. We always warn families the process is unpredictable in terms of time frame. He may live minutes or days, something I wouldn't really know until he was off machines.
It was a very peaceful process. The family was all in the room. We removed the breathing tube. Took off all the other tubes and wires, beeps and buzzes, and let them just be with him. It was evident he'd been very sick, because he really made no effort to breath on his own. I prepared the family it would be more in the minutes range and left them to be with him.
Sometimes the monitors out in the nurses station still record the electrical telemetry from the heat. I'm not as used to this, as usually everything is turned off, but in this case I could look at a little computer monitor to see his heart still beating.
Here's the confession. With my husband out of town this month, I'm the one to pick up our daughter from daycare. I'd already stayed in the hospital longer than I usually do, and was keenly aware as I watched the blip of this mans heart, that each blip was time getting later and later. As it began to get slower and slower, I found myself mentally coaxing the heart to stop. "'c'mon, let that be the last beat. I've got to go!"
I know, how callous! When I realized what I was doing I was immediately disappointed in myself. This bleep on the screen signified a person's life...by hoping it would stop soon, I was essentially wishing this man dead. Not for some noble reason, like to end his suffering, but so that I could pick up my daughter on time from day care.
That's my confession. And my apology to this man's soul, who's heart did stop. And to his family, who weeped at his bedside and hugged me in gratitude for helping him die peacefully, not realizing my hidden selfishness.
This happened last week at work. I had met with a lovely family to discuss our plan for their loved one who was on a ventilator, not responding, and likely permanently stuck like this. He'd had the most aggressive care possible, but it seemed brain damage was irreversible. In the family meeting they told stories of his great accomplishments and were very clear that living a life on a vent with artificial nutrition through a feeding tube in his stomach, in a nursing home somewhere, was not something he would have wanted.
The decision was made then to withdraw the aggressive measures in place. We'd remove the ventilator and antibiotics and support him as his body transitioned to a dying process. We always warn families the process is unpredictable in terms of time frame. He may live minutes or days, something I wouldn't really know until he was off machines.
It was a very peaceful process. The family was all in the room. We removed the breathing tube. Took off all the other tubes and wires, beeps and buzzes, and let them just be with him. It was evident he'd been very sick, because he really made no effort to breath on his own. I prepared the family it would be more in the minutes range and left them to be with him.
Sometimes the monitors out in the nurses station still record the electrical telemetry from the heat. I'm not as used to this, as usually everything is turned off, but in this case I could look at a little computer monitor to see his heart still beating.
Here's the confession. With my husband out of town this month, I'm the one to pick up our daughter from daycare. I'd already stayed in the hospital longer than I usually do, and was keenly aware as I watched the blip of this mans heart, that each blip was time getting later and later. As it began to get slower and slower, I found myself mentally coaxing the heart to stop. "'c'mon, let that be the last beat. I've got to go!"
I know, how callous! When I realized what I was doing I was immediately disappointed in myself. This bleep on the screen signified a person's life...by hoping it would stop soon, I was essentially wishing this man dead. Not for some noble reason, like to end his suffering, but so that I could pick up my daughter on time from day care.
That's my confession. And my apology to this man's soul, who's heart did stop. And to his family, who weeped at his bedside and hugged me in gratitude for helping him die peacefully, not realizing my hidden selfishness.
Monday, December 8, 2008
Toddlers at work
I lead a lot of family meetings for my job. This week, I felt like I was mediating a bunch of toddlers at one such meeting. The sad thing is the fighting had little to do with the actual health of my patient.
The background: Mr Jones, 60's, came into the hospital with bad emphysema. The woman with him identified herself as his wife. She then became the primary contact for decisions as he got sicker. "Shall we do this surgery Mrs Jones?" and she directed the doctors on what he'd want. It got to a point that he was on the ventilator and required neurosurgery for extra fluid on his brain. At this time, she decided to call the rest of the family who lives out of town to tell them their loved one was in the ICU and critical.
Chaos ensued. A son flew into town. Two sisters drove in. All entering the ICU with steam whistling through their ears. The family was angry. There was no "Mrs. Jones", they said. This woman had been married to the patient 20 years before for only 4 months. After a restraining order and a loss of a great deal of money they divorced. She arrived at his door a few months ago, needing a place to live, with a certificate showing she was a licensed caregiver, which the patient needed. So she moved in with him.
It was in the fireworks of these two parties meeting that we were asked to intervene. The good news was that the patient was doing better, and able to get off the vent, so I could speak directly to him about his medical decisions. He could also designate who he wanted to be his decision maker in case he got ill again.
The family and ex wife still needed some help and as I met with them, I realized that true issue was not the patient and his wishes but the house he was living in. He was renting it from his out of town sisters. When they arrived in town they found the ex-wife had changed the locks and barred them ,with police force, from entering. I guess because the patient was renting it, he had to give permission for the "landlords" (his family) to enter, and being on the vent his "wife" had that power.
Sadly for this fake wife, as the patient awoke, he was able to give that permission to his family, and her scheming began to crumble. As she began to realize the situation she emotionally started to unravel, pleading with the patient, newly off the vent and still in the ICU, to change his mind. She hysterically begged me to convince him otherwise as she'd soon be homeless. The family, not helping the situation, antagonized the woman, with threats of calling the police.
I tried, in vain, to help them talk as adults, but as they bickered and threw insults and waved different legal documents in front of each other, I began to see them as two-year-olds struggling to both play with the same toy. My reasoning doesn't help with my own two-year-old, so why would it help now. Like with toddlers I finally said, "Enough! Time for both parties to leave. Your fighting is hindering our care of the patient." They did need a bit more coaxing from the hospital security before they finally left.
It's interesting what brings out the worst in people. In this case it was a house. Never mind our sweet patient who almost died, who will need good care at home once he leaves the hospital, and who emotionally is sickened to find that someone he really loved was trying once again to swindle him
The background: Mr Jones, 60's, came into the hospital with bad emphysema. The woman with him identified herself as his wife. She then became the primary contact for decisions as he got sicker. "Shall we do this surgery Mrs Jones?" and she directed the doctors on what he'd want. It got to a point that he was on the ventilator and required neurosurgery for extra fluid on his brain. At this time, she decided to call the rest of the family who lives out of town to tell them their loved one was in the ICU and critical.
Chaos ensued. A son flew into town. Two sisters drove in. All entering the ICU with steam whistling through their ears. The family was angry. There was no "Mrs. Jones", they said. This woman had been married to the patient 20 years before for only 4 months. After a restraining order and a loss of a great deal of money they divorced. She arrived at his door a few months ago, needing a place to live, with a certificate showing she was a licensed caregiver, which the patient needed. So she moved in with him.
It was in the fireworks of these two parties meeting that we were asked to intervene. The good news was that the patient was doing better, and able to get off the vent, so I could speak directly to him about his medical decisions. He could also designate who he wanted to be his decision maker in case he got ill again.
The family and ex wife still needed some help and as I met with them, I realized that true issue was not the patient and his wishes but the house he was living in. He was renting it from his out of town sisters. When they arrived in town they found the ex-wife had changed the locks and barred them ,with police force, from entering. I guess because the patient was renting it, he had to give permission for the "landlords" (his family) to enter, and being on the vent his "wife" had that power.
Sadly for this fake wife, as the patient awoke, he was able to give that permission to his family, and her scheming began to crumble. As she began to realize the situation she emotionally started to unravel, pleading with the patient, newly off the vent and still in the ICU, to change his mind. She hysterically begged me to convince him otherwise as she'd soon be homeless. The family, not helping the situation, antagonized the woman, with threats of calling the police.
I tried, in vain, to help them talk as adults, but as they bickered and threw insults and waved different legal documents in front of each other, I began to see them as two-year-olds struggling to both play with the same toy. My reasoning doesn't help with my own two-year-old, so why would it help now. Like with toddlers I finally said, "Enough! Time for both parties to leave. Your fighting is hindering our care of the patient." They did need a bit more coaxing from the hospital security before they finally left.
It's interesting what brings out the worst in people. In this case it was a house. Never mind our sweet patient who almost died, who will need good care at home once he leaves the hospital, and who emotionally is sickened to find that someone he really loved was trying once again to swindle him
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