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.
Monday, December 15, 2008
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
Saturday, November 22, 2008
Jabba the Hutt
It is very common for people to see deceased relatives in the last hours and days of life. Usually a comfort to families and patients it is unknown what this phenomenon is. Some say it has to do with cultural expectations, and that it's natural for someone close to death to talk about their mother or someone who has gone on. Could it be possible that someone is actually there? How would we prove it?
One of our great social workers told the story of Eddy. He was young and at our house dying of cancer. The day before he died he began to tell others that he'd been visited by his deceased grandmother in the company of a stranger. He told our social worker, "It was great to see my grandmother, but that other one was a bit scary. I don't know who grannie was with, but it looked almost like Jabba the Hutt".
This surely would point to the theory that these visions are delusional; made up dreams in our minds. And this is precisely what our social worker thought as she kindly listened to him tell again about his "visitors".
The next day Eddy was unconscious and no longer able to communicate. Eddy's mom sat by his side when our social worker visited. Eddy's mom had missed the stories of the day before, and our social worker gently retold Eddy's vision, including this account of "jabba the hutt". Instead of chuckling or smiling as our social worker expected, her face turned white and her mouth dropped.
"I don't believe it" she gasped. She went on to tell our social worker that Eddy's grandmother had a dear sister who died years before Eddy was born. The two older woman had been inseparable. This great aunt of Eddy's always struck people for her overweight, bald-headed, eyes larger than life look about her. Though she'd never considered it before, she looked exactly like Jabba the Hutt.
Eddy then was seeing someone he'd never met, not even seen pictures of, and absolutely didn't recognize. Now explain that one
Wednesday, October 15, 2008
Gum Drops
Every day she has bowls of candy in her room at the hospice place. There is always one filled with gum drops, but today there was one with pumpkin candies too. She's not the typical hospice patient, although she came to us 2 months ago appearing to be on death's door, she clearly is not. She's in her 80's, uses a walker to get around, but looks like she's got at least another 6 months to go.
She offers me a gum drop and then says, "I'm trying to cut back, limiting myself to just 3 gumdrops a day. One in the morning, one at lunch and one before bed, 4 a day was just too much" She is very serious but it's hard not to smile. "How did you know 4 was too much?" I ask. "Well" she hesitates "it was the noises my body was making, and someone told me once the noise was from eating too much sugar." I certainly wasn't going to challenge her logic. "You know" she continues, "When I first got here, I really let myself go, eating a couple gumdrops at a time...I should have known better. Life is good now that I'm down to 3" And with that we move on to talk about other things.
Part of me wants to convince her to let loose, eat what she wants, she's on hospice for goodness sake! But I also recognize her joy in self-restraint. Perhaps it is in limiting herself that she relishes the tiny sugar covered jelly candy all the more? When I left the room, I took with me her gift of one gum drop. More as a reminder to me that life's not always about how much more I CAN have, but how much is enough for me. Maybe just 3 gumdrops a day is enough : )
Monday, September 22, 2008
Christmas in September
Not everything is always a perfect ending. One of our patients this last week is a single mom of 3. She was diagnosed with cancer last year, having just turned 40 it was very unwelcome news. The doctors were never able to say where the cancer came from. It was squamous cell, but because it had already spread so far when it was found, it couldn't be called "lung" cancer or "skin" cancer. What they did know was it was in her bones and brain and abdomen and it couldn't be cured.
As a mom, her one wish has been to make it to Christmas. However, everyone at the "house" knew that wasn't going to be likely. Although she was still getting around, eating meals, the chance of her making it 3 more months seemed impossible. Always trying to be creative, we just decided to have Christmas early. An email was sent out to all the volunteers and staff on Friday for a call to arms. There was to be a Christmas tree and lights, presents for all the kids...Christmas music and goodies and even a Santa Claus visiting.
In just 2 days, the office here at the house began to fill up with food and gifts in anticipation for Monday's Christmas in September celebration.
I was surprised then when I entered the office this morning to find people in tears. In a seemingly unfair turn of events, our patient had died overnight, on our "Christmas Eve".
What awful timing. All these good intentions by so many caring people, left now to wonder why? And 3 children who were already dealing with a dying mom, not just wondering, but now screaming, WHY?
As a mom, her one wish has been to make it to Christmas. However, everyone at the "house" knew that wasn't going to be likely. Although she was still getting around, eating meals, the chance of her making it 3 more months seemed impossible. Always trying to be creative, we just decided to have Christmas early. An email was sent out to all the volunteers and staff on Friday for a call to arms. There was to be a Christmas tree and lights, presents for all the kids...Christmas music and goodies and even a Santa Claus visiting.
In just 2 days, the office here at the house began to fill up with food and gifts in anticipation for Monday's Christmas in September celebration.
I was surprised then when I entered the office this morning to find people in tears. In a seemingly unfair turn of events, our patient had died overnight, on our "Christmas Eve".
What awful timing. All these good intentions by so many caring people, left now to wonder why? And 3 children who were already dealing with a dying mom, not just wondering, but now screaming, WHY?
Sunday, August 17, 2008
Finger Nails
You really can't take the mom out of anyone. I saw an example of this very clearly this week. We have a woman in her 30's here with cervical cancer. It's been one of the tougher things for me to come in each day and visit with her about her cancer and about her girls. Ellie is 7 and Zoey is 2. There are pictures plastered all over the walls here at the "house". Sometimes in the afternoons, I hear the girls running around in the halls, being admonished by grandparents to keep quiet.
Kindra, my patient, has really been in and out of it, asleep most of the time. Part of this is to escape the hard reality of dying so young. She talked to me earlier this week in one of her more awake times about the girls. "Zoey isn't going to miss me, I mean she'll miss me in the way people miss the idea of things, the idea of a mother, but not really me. It's Ellie I really worry about. I know she'll miss me so much. I worry their dad will take his grief out on them, won't be patient with them." I thought, as I was scrunched on the corner of her bed listening, how unthinkably hard this must be. What must be harder... knowing your child won't remember you or knowing your child will?
After that talk she spent the next several days in a deep sleep, enough to make everyone concerned that she was getting close to dying. That is until today. Suddenly out of a deep coma she arose, sat up and wanted to spend time with her girls. She got up to a wheelchair and was pushed around for a few minutes. And then, like only a mother could do, she wanted to clip her girls fingernails.
There in her wheel chair, pale with dark circles around her eyes she sat, almost skin and bones. Each girl one at a time climbed into her lap so mom could clip those nails and get them clean. Such a little thing, but spoke volumes.
She went back to sleep later, maybe not to awake again. But for a time, she mustered up her strength to take care of unfinished business. Isn't it those little things moms do each day that make them moms? There's not a more symbolic gesture as that...
Kindra, my patient, has really been in and out of it, asleep most of the time. Part of this is to escape the hard reality of dying so young. She talked to me earlier this week in one of her more awake times about the girls. "Zoey isn't going to miss me, I mean she'll miss me in the way people miss the idea of things, the idea of a mother, but not really me. It's Ellie I really worry about. I know she'll miss me so much. I worry their dad will take his grief out on them, won't be patient with them." I thought, as I was scrunched on the corner of her bed listening, how unthinkably hard this must be. What must be harder... knowing your child won't remember you or knowing your child will?
After that talk she spent the next several days in a deep sleep, enough to make everyone concerned that she was getting close to dying. That is until today. Suddenly out of a deep coma she arose, sat up and wanted to spend time with her girls. She got up to a wheelchair and was pushed around for a few minutes. And then, like only a mother could do, she wanted to clip her girls fingernails.
There in her wheel chair, pale with dark circles around her eyes she sat, almost skin and bones. Each girl one at a time climbed into her lap so mom could clip those nails and get them clean. Such a little thing, but spoke volumes.
She went back to sleep later, maybe not to awake again. But for a time, she mustered up her strength to take care of unfinished business. Isn't it those little things moms do each day that make them moms? There's not a more symbolic gesture as that...
Friday, August 15, 2008
Bathing
I'm constantly in awe of the little things hospice does to help families cope.
Madame Olga was a true diva. A life long voice teacher, her two daughters' sole purpose in life was to cater to their mother's ego. Madame Olga was well known and spent her life dedicated to her craft. She was still giving voice lessons at 97, a week before her stroke. It was obvious to the family that any physical impairment, let alone loosing the ability to sing, would be impossible to live with. She came to the "house" to spend her final days. Although mostly unresponsive, completely unable to communicate, every time the daughters would play their mother's music, her eyes would open and a tear would fall.
After she passed away, the nurse did what she always does; offered the daughters a chance to help the nurse bathe the body. Hesitatingly, both daughters consented.
The experience was life changing. They both later told how that symbolic act of cleaning their mother's body, helped both of them let go. The eldest, Gertrude, though in her late 60's had spent her whole life taking care of her mother, to the neglect of her own life. As she bathed the lifeless body before her, she wept and verbally forgave her mother. The bathing ritual was a way to cleanse her own soul of the harbored resentment at the larger-than-life mother who was never good at being "mom". As both daughters cleaned her wrinkled strong hands, and washed her crooked feet, they were also able to reminisce and say a final good bye.
Cleaning, bathing and preparing a body after death has been a part of cultures for ages. It is only in our modern death denying culture that we've delegated the task to others. It's refreshing for me to hear that hospice at least offers the option. For some, like the daughters I met, it was one of the most meaningful experiences of their lives.
Madame Olga was a true diva. A life long voice teacher, her two daughters' sole purpose in life was to cater to their mother's ego. Madame Olga was well known and spent her life dedicated to her craft. She was still giving voice lessons at 97, a week before her stroke. It was obvious to the family that any physical impairment, let alone loosing the ability to sing, would be impossible to live with. She came to the "house" to spend her final days. Although mostly unresponsive, completely unable to communicate, every time the daughters would play their mother's music, her eyes would open and a tear would fall.
After she passed away, the nurse did what she always does; offered the daughters a chance to help the nurse bathe the body. Hesitatingly, both daughters consented.
The experience was life changing. They both later told how that symbolic act of cleaning their mother's body, helped both of them let go. The eldest, Gertrude, though in her late 60's had spent her whole life taking care of her mother, to the neglect of her own life. As she bathed the lifeless body before her, she wept and verbally forgave her mother. The bathing ritual was a way to cleanse her own soul of the harbored resentment at the larger-than-life mother who was never good at being "mom". As both daughters cleaned her wrinkled strong hands, and washed her crooked feet, they were also able to reminisce and say a final good bye.
Cleaning, bathing and preparing a body after death has been a part of cultures for ages. It is only in our modern death denying culture that we've delegated the task to others. It's refreshing for me to hear that hospice at least offers the option. For some, like the daughters I met, it was one of the most meaningful experiences of their lives.
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