I've started home visits this month. A little different pace than working in the hospital. I like getting to come into people's space. Their homes tell so much about them. A little glimpse that most doctors don't get into their patient's lives.
One of my encounters yesterday stands out, not because of the appearance of the patient's home, but the appearance of the patient himself. He's had squamous cell carcinoma of his sinus for 2 years. The cancer has literally eaten away his face.
When you see him, he has something like a curtain hanging over his right cheek. Some pads are taped up to his eye brow, and then hang down over the area of destruction so you can't see. He's developed a nervous tick over these 2 years, his right hand taps the tape, while his hand conveniently covers the dressing. I assume it started whenever the first lesion appeared, kind of hiding it from people without them noticing. Now this habit is a full blown tick, he can't stop the motion.
I was amazed when the dressing came off. The perspective was something I've never seen. From below his eyebrow down to his lower lip is a large cavern. NO longer any eye, cheekbone, top lip. It's uneven and oozing, as if some creature just took a giant bite out of him. He wears dentures still to help him drink fluid (since his lip is gone). Thus peering down at him, I could see the top of the upper dentures; as he moved his jaw, they moved. The hole is the size of a grape fruit- his nose only half there. He can't take any solid food, and even fluid pours out of the right side, so that only a few ounces get in.
It must be hard for him on many levels. One, he's a prisoner of his house, to embarrassed to leave, even with the dressing, people would stare. He hasn't been out in over a year. The other hard thing is the visibility of the cancer. If there's a blessing in most cancers, it's that it's on the inside...so we don't see it's destruction. To have to feel, watch, and experience the eating away of your body must be torture.
Tuesday, August 28, 2007
Wednesday, August 22, 2007
Communication
You never know what direction a palliative care consult may take. Our team got involved with a 40ish man with a rare condition. He had Berger's disease, which is a disease of blood vessels that can be very painful. In fact his fingertips had auto amputated- basically died- leaving just the nail sticking out by itself. Another problem with this disease can be forming clots. He came in the hospital needing surgery for some clots in the vessels in his legs and ended up having multiple strokes, leaving him in a coma state, unable to wake up, talk, etc. That's when we came on board.
What makes this story unique is the family. We had a family meeting and the patient's son and extended family decided to move to comfort measures- meaning we'd stop all the extra meds we were using to prolong this poor man's life, and let him die naturally. They all talked about how miserable he'd been with this berger's disease- always in pain, and getting worse and worse. They new he'd never recover from these massive strokes, so the best thing was to make him comfortable.
As extraordinary as it might seem, this same son attempted suicide last night at 8 o'clock, and unbeknownst to him, his father died an hour later. Just as his father was leaving our care, the son was being admitted to the very same ICU unit his father was leaving. The ICU team and even the psychiatrist that came to see the son all avoided the news about his father...who wants to tell a suicidal person someone they love just died? That's when I got a page.
"We were wondering if you'd be the one to tell him his dad died...after all you did meet him at the family meeting, and no one else wants to do it"
I guess when you're in a specialty that specialized in communication, people want you to do their dirty work. So at 3 in the afternoon, 18 hours after his dad died, I knocked on his glass ICU door, took a deep breath and jumped in. He actually took it okay, was upset and sad, but had expected it... I think he was just happy someone told him. It might seem unwise to tell a suicidal person about their father's death, but better now while he's safe, being watched like a hawk then finding out later on his own.
What makes this story unique is the family. We had a family meeting and the patient's son and extended family decided to move to comfort measures- meaning we'd stop all the extra meds we were using to prolong this poor man's life, and let him die naturally. They all talked about how miserable he'd been with this berger's disease- always in pain, and getting worse and worse. They new he'd never recover from these massive strokes, so the best thing was to make him comfortable.
As extraordinary as it might seem, this same son attempted suicide last night at 8 o'clock, and unbeknownst to him, his father died an hour later. Just as his father was leaving our care, the son was being admitted to the very same ICU unit his father was leaving. The ICU team and even the psychiatrist that came to see the son all avoided the news about his father...who wants to tell a suicidal person someone they love just died? That's when I got a page.
"We were wondering if you'd be the one to tell him his dad died...after all you did meet him at the family meeting, and no one else wants to do it"
I guess when you're in a specialty that specialized in communication, people want you to do their dirty work. So at 3 in the afternoon, 18 hours after his dad died, I knocked on his glass ICU door, took a deep breath and jumped in. He actually took it okay, was upset and sad, but had expected it... I think he was just happy someone told him. It might seem unwise to tell a suicidal person about their father's death, but better now while he's safe, being watched like a hawk then finding out later on his own.
Saturday, August 18, 2007
The Narrative
Narrative in medicine is a huge part of the human struggle with disease. Another way to say this is, our stories help us cope.
A 70 ish hardworking farmer had a stroke at home and collapsed hitting his head and causing a bleed in his brain. He was rushed to our hospital and placed on life support. The neuro intensivist spent days trying to fix him. He had a drain from his brain to help relieve the pressure, he was on medicines and fluids to correct any imbalances in his electrolytes. Our team came on board to support the family and honor his wishes. They were giving him time to wake up, as sometimes can happen with stokes in the few days after the event. They spoke of his humor, and daily laughter. They said he always told them if he couldn't laugh and be at home he'd rather die. It became clear that the best case scenario would be him living in a skilled hospital on an breathing machine forever. The family made the hard decision to take the breathing tube out, which would mean he would pass away.
The day this was decided, I was in charge of the process. The family didn't want to be in the room when we took the tube out. He was breathing well enough, we assumed he'd probably do okay for a day or two off the machine. The family went to lunch and we got everything ready and pulled out the tube and the drain in the brain. I watched him like a hawk, looking for signs that he was struggling, so I could give medicine to take away the struggle. In minutes from the tube coming out he was making changes that indicated he would not last days, but likely die in minutes. I panicked- THE FAMILY WAS AT LUNCH!
I quickly began paging their names overhead in the hospital, and calling cell phone numbers. Doing this I kept peeking at him in his room, watching his breathing space further apart. Finally I spotted the family down the hall, seeing in their movements they had no idea of the urgency to get here. I met them, and calmly tried to prepare them for the sudden changes, that he was close to death. They now rushed into the room. I could see he had already died. They hovered around him, stroking his face and hands all saying their I love you's. His wife of 60 years bent close to his ear and whispered to him. I knew this was important so I just waited several minutes and then gently said I needed to check him.
I was sure they all knew he had died, but as I put my stethoscope to his chest to confirm it, and then solemnly nodded that he was gone, a new burst of tears issued forth. They hadn't known. Then in the moments of tears and hugs I heard a daughter say, "At least we were here by his side when he died, he needed us to let go, it turned out so perfectly" I had been thinking how unfortunate it was they had missed it, but now I saw they believed they had made it. I kept my mouth shut with the correction and heard other members now voice similar sentiments on the timing.
I realized now that this narrative would be a part of this family's life long story. And the story of being there, saying goodbye and ushering him into the afterlife was more crucial than the actual facts. Some may say truth is more important, but for them, the perception offers more healing.
A 70 ish hardworking farmer had a stroke at home and collapsed hitting his head and causing a bleed in his brain. He was rushed to our hospital and placed on life support. The neuro intensivist spent days trying to fix him. He had a drain from his brain to help relieve the pressure, he was on medicines and fluids to correct any imbalances in his electrolytes. Our team came on board to support the family and honor his wishes. They were giving him time to wake up, as sometimes can happen with stokes in the few days after the event. They spoke of his humor, and daily laughter. They said he always told them if he couldn't laugh and be at home he'd rather die. It became clear that the best case scenario would be him living in a skilled hospital on an breathing machine forever. The family made the hard decision to take the breathing tube out, which would mean he would pass away.
The day this was decided, I was in charge of the process. The family didn't want to be in the room when we took the tube out. He was breathing well enough, we assumed he'd probably do okay for a day or two off the machine. The family went to lunch and we got everything ready and pulled out the tube and the drain in the brain. I watched him like a hawk, looking for signs that he was struggling, so I could give medicine to take away the struggle. In minutes from the tube coming out he was making changes that indicated he would not last days, but likely die in minutes. I panicked- THE FAMILY WAS AT LUNCH!
I quickly began paging their names overhead in the hospital, and calling cell phone numbers. Doing this I kept peeking at him in his room, watching his breathing space further apart. Finally I spotted the family down the hall, seeing in their movements they had no idea of the urgency to get here. I met them, and calmly tried to prepare them for the sudden changes, that he was close to death. They now rushed into the room. I could see he had already died. They hovered around him, stroking his face and hands all saying their I love you's. His wife of 60 years bent close to his ear and whispered to him. I knew this was important so I just waited several minutes and then gently said I needed to check him.
I was sure they all knew he had died, but as I put my stethoscope to his chest to confirm it, and then solemnly nodded that he was gone, a new burst of tears issued forth. They hadn't known. Then in the moments of tears and hugs I heard a daughter say, "At least we were here by his side when he died, he needed us to let go, it turned out so perfectly" I had been thinking how unfortunate it was they had missed it, but now I saw they believed they had made it. I kept my mouth shut with the correction and heard other members now voice similar sentiments on the timing.
I realized now that this narrative would be a part of this family's life long story. And the story of being there, saying goodbye and ushering him into the afterlife was more crucial than the actual facts. Some may say truth is more important, but for them, the perception offers more healing.
Saturday, August 11, 2007
Chance to say goodbye?
We had a very messy family situation on Friday. A 40 something man with HIV, Hep C causing liver failure and lymphoma in his brain had come into the hospital very sick. For years he's told his family that he wouldn't want to be kept alive on machines. He was so sick when he arrived that the ICU team needed to decide quickly whether to intubate him or let him die comfortably. The patient was too confused to give and answer, and the plan was to honor his previous wishes and not put him on machines. However, his youngest son, 17 was panicking and demanded his dad be intubated. It's hard in those situations to know what to do. Usually it's better to intubate and then withdraw care later, as you can't really change once he dies.
We got involved the next day to help the family sort out what to do, now that their dad was where he never wanted to be- living on machines. I went to the ICU to see the patient first. He was the color of a sunflower, his skin full of fluid making him puffy. His feet and hands were already turning blue, like they do when someone's dying. It was clear to me after seeing him, that he was going to die despite all the medical intervention.
We sat down with the family- an ex wife, 3 kids with from different moms, and family friends. We talked about him and his wishes and how sick he was. The family finally grasped the situation and one daughter said, "I guess the only question then is when do we stop the machines, because we also don't know what to do about his other son..." AT this moment she chokes up and everyone in the circle starts crying more. We ask if the other son is out of town? "No, he's here at the hospital" We learn that this 23 year old son was in a car accident the night before, and broke his neck, and looks like he might be paralyzed. He was in the neuro ICU and didn't know his dad was even at our hospital. His mom, different from the ex we were talking to, had told everyone to keep the news from him, as he would be too stressed. Although he'd been asking about his dad since the accident, everyone was lying to him.
We were of course aghast at this. The immediate question was should they tell him about his dad? And the answer was an emphatic YES. The long term ramifications of being lied to about someone dying can be devastating. While done out of protection, the family wasn't thinking about days from now when they'd have to tell the truth. The second question was equally important, could we arrange a way for the son to say goodbye to his dad if possible? I went to work calling the neurosurgeons and trauma surgeons for their input. They all cleared him to go by hospital bed. The hospital is pretty big, so he'd actually be wheeled from one building to another. The ICU room where his father was dying was big enough to accommodate another bed, however because of the son's neck injury he wouldn't be able to turn his head to see his dad. We'd need to lift the head of the bed to almost sitting for him to say goodbye.
All the planning looks to be in vain. We talked with the son's mom, frazzled by having a son who is likely a paraplegic and an ex husband dying on a ventilator, all at the same time. She is angry at the world right now and has decided she won't tell her son about his father. She's in protection mode, and to her, having him even just be told that his father was dying could make him give up on his own recovery. She says she'll think about it, but I believe that while "thinking" the dad will probably die.
This is the hard part about all of medicine. We can give information and have opinions, but ultimately people make their own choices. In this case, I'm glad I won't be around to be a part of the the truth telling later. I can only guess at the son's sense of betrayal and regret for a moment that was possible, but gone forever.
We got involved the next day to help the family sort out what to do, now that their dad was where he never wanted to be- living on machines. I went to the ICU to see the patient first. He was the color of a sunflower, his skin full of fluid making him puffy. His feet and hands were already turning blue, like they do when someone's dying. It was clear to me after seeing him, that he was going to die despite all the medical intervention.
We sat down with the family- an ex wife, 3 kids with from different moms, and family friends. We talked about him and his wishes and how sick he was. The family finally grasped the situation and one daughter said, "I guess the only question then is when do we stop the machines, because we also don't know what to do about his other son..." AT this moment she chokes up and everyone in the circle starts crying more. We ask if the other son is out of town? "No, he's here at the hospital" We learn that this 23 year old son was in a car accident the night before, and broke his neck, and looks like he might be paralyzed. He was in the neuro ICU and didn't know his dad was even at our hospital. His mom, different from the ex we were talking to, had told everyone to keep the news from him, as he would be too stressed. Although he'd been asking about his dad since the accident, everyone was lying to him.
We were of course aghast at this. The immediate question was should they tell him about his dad? And the answer was an emphatic YES. The long term ramifications of being lied to about someone dying can be devastating. While done out of protection, the family wasn't thinking about days from now when they'd have to tell the truth. The second question was equally important, could we arrange a way for the son to say goodbye to his dad if possible? I went to work calling the neurosurgeons and trauma surgeons for their input. They all cleared him to go by hospital bed. The hospital is pretty big, so he'd actually be wheeled from one building to another. The ICU room where his father was dying was big enough to accommodate another bed, however because of the son's neck injury he wouldn't be able to turn his head to see his dad. We'd need to lift the head of the bed to almost sitting for him to say goodbye.
All the planning looks to be in vain. We talked with the son's mom, frazzled by having a son who is likely a paraplegic and an ex husband dying on a ventilator, all at the same time. She is angry at the world right now and has decided she won't tell her son about his father. She's in protection mode, and to her, having him even just be told that his father was dying could make him give up on his own recovery. She says she'll think about it, but I believe that while "thinking" the dad will probably die.
This is the hard part about all of medicine. We can give information and have opinions, but ultimately people make their own choices. In this case, I'm glad I won't be around to be a part of the the truth telling later. I can only guess at the son's sense of betrayal and regret for a moment that was possible, but gone forever.
Friday, August 3, 2007
Visitors
There are unexplainable things that happen near death. Here's a story from this past week. A 40ish female had been in hospice dying of lung cancer. I've had a chance to talk with her everyday, and watch the slow process of dying. She made it clear in the beginning that she didn't believe in God, and thought death was either final or perhaps we'd be reincarnated...but she definitely didn't ascribe to any heavenly afterlife beliefs.
She started making some rapid changes indicating that things were getting closer. Hadn't had any fluids in days, was mostly sleeping, having spells when her breathing would stop for 20 secs. I went in one morning and sat on her bed, as was custom. "How are you doing today Sally?"
With all the energy she had she'd half lift her eyes to see me and then close them to talk. "I'm doing okay" She said weakly. I just waited in silence for her to talk. She started up, "However, there's this man that keeps coming in here." I was surprised, "oh really?" because no one else had been in to see her that day. She continued with a frown, "Yes, he keeps asking me to come with him, to come to the other side" She didn't see my eyes get big. She took a break and then went on, "I just wish he'd answer all the questions I have". "Who sally?" I asked still wondering about this man that was visiting her. Then she really shocked me when she said, "The Lord".
How to explain this medically? I think there is no way. Sally died shortly after that, perhaps finally deciding to go with that man to a better place.
She started making some rapid changes indicating that things were getting closer. Hadn't had any fluids in days, was mostly sleeping, having spells when her breathing would stop for 20 secs. I went in one morning and sat on her bed, as was custom. "How are you doing today Sally?"
With all the energy she had she'd half lift her eyes to see me and then close them to talk. "I'm doing okay" She said weakly. I just waited in silence for her to talk. She started up, "However, there's this man that keeps coming in here." I was surprised, "oh really?" because no one else had been in to see her that day. She continued with a frown, "Yes, he keeps asking me to come with him, to come to the other side" She didn't see my eyes get big. She took a break and then went on, "I just wish he'd answer all the questions I have". "Who sally?" I asked still wondering about this man that was visiting her. Then she really shocked me when she said, "The Lord".
How to explain this medically? I think there is no way. Sally died shortly after that, perhaps finally deciding to go with that man to a better place.
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