I want to talk about hospice . . .
. . . And what it means for families . . .
This is a long thread.
Trauma-informed warning: it may be hard to read.
. . . And what it means for families . . .
This is a long thread.
Trauma-informed warning: it may be hard to read.
1/
In med school, I learned about the benefits of hospice—the focus on quality of life, dying at home in a more peaceful setting, being surrounded by family.
I imagined myself recommending this option to patients, working to help them carry out the wishes of their loved one.
In med school, I learned about the benefits of hospice—the focus on quality of life, dying at home in a more peaceful setting, being surrounded by family.
I imagined myself recommending this option to patients, working to help them carry out the wishes of their loved one.
2/
When several docs/nurses recommended hospice for my Dad (pushed it), I thought about what I’d learned in school & looked at the options. His quality of life at the end was my primary concern.
I called friends who worked in the field. I checked recommended facilities, agencies
When several docs/nurses recommended hospice for my Dad (pushed it), I thought about what I’d learned in school & looked at the options. His quality of life at the end was my primary concern.
I called friends who worked in the field. I checked recommended facilities, agencies
3/
There are different options: in home services, facilities, and hospice within the hospital setting.
My father had a severe rash and rectal foley b/c of an adverse reaction to a med. I knew that caring for him in-home would be complicated, so I tried to find a local facility.
There are different options: in home services, facilities, and hospice within the hospital setting.
My father had a severe rash and rectal foley b/c of an adverse reaction to a med. I knew that caring for him in-home would be complicated, so I tried to find a local facility.
4/
Insurance would not pay for a facility. I couldn’t afford it.
I requested an eval for inpatient hospice services. My Dad was in the ICU, 4/5 people repositioned him b/c his skin tore with movement due to the rash.
I wasn’t certain I could provide the care he needed at home.
Insurance would not pay for a facility. I couldn’t afford it.
I requested an eval for inpatient hospice services. My Dad was in the ICU, 4/5 people repositioned him b/c his skin tore with movement due to the rash.
I wasn’t certain I could provide the care he needed at home.
5/
He was not accepted for inpatient services.
I spoke with the social worker about my concerns. My dad’s physicians told me that he had less than a week. The social worker assured me that given his health, there would be daily support until he passed.
I would be fine.
He was not accepted for inpatient services.
I spoke with the social worker about my concerns. My dad’s physicians told me that he had less than a week. The social worker assured me that given his health, there would be daily support until he passed.
I would be fine.
6/
Assured of support, I set up in-home services. I signed the paperwork to withdraw care. I changed his code status to DNR.
I rearranged the living room. I made up the couch so I could sleep in the same room. I stocked up on medical supplies.
Everything will be fine.
Assured of support, I set up in-home services. I signed the paperwork to withdraw care. I changed his code status to DNR.
I rearranged the living room. I made up the couch so I could sleep in the same room. I stocked up on medical supplies.
Everything will be fine.
7/
He came home Wednesday. Things seemed okay. An intake nurse was there, his hospice nurse came by with an aide, a social worker came & helped me sign up for respite services so that I could have additional support. His meds arrived.
He came home Wednesday. Things seemed okay. An intake nurse was there, his hospice nurse came by with an aide, a social worker came & helped me sign up for respite services so that I could have additional support. His meds arrived.
8/
I looked at the meds, a combo of oral & rectal meds. I wouldn’t be able to give him any of the rectal meds. He no longer had an IV, so everything would need to be by mouth.
Maybe it will be okay
He was clearly in pain from the move. We started with pain meds every 4hrs.
I looked at the meds, a combo of oral & rectal meds. I wouldn’t be able to give him any of the rectal meds. He no longer had an IV, so everything would need to be by mouth.
Maybe it will be okay
He was clearly in pain from the move. We started with pain meds every 4hrs.
9/
His pain didn’t improve. I called the nurse. We tried meds every 3, then 2, then every hour
The nurse & aide came by Thursday. After a quick check-in they were gone. I’d only been able to reposition him once. It was too painful and I was clearly hurting him when I tried.
His pain didn’t improve. I called the nurse. We tried meds every 3, then 2, then every hour
The nurse & aide came by Thursday. After a quick check-in they were gone. I’d only been able to reposition him once. It was too painful and I was clearly hurting him when I tried.
10/
His rash was still itching. We picked up liquid Benadryl, but the dose was huge. He struggled to drink it, never got a full dose.
He still needed meds hourly. I woke up ~8am, went to bed at 3/4am. A friend checked on him from 4-8am. By Friday, I was exhausted.
His rash was still itching. We picked up liquid Benadryl, but the dose was huge. He struggled to drink it, never got a full dose.
He still needed meds hourly. I woke up ~8am, went to bed at 3/4am. A friend checked on him from 4-8am. By Friday, I was exhausted.
11/
He was in pain. He was itching all over. He was uncomfortable, moaning, crying out. He couldn’t tolerate the meds he needed in the form available.
I was not providing him the quality of care I promised. He was suffering.
He was in pain. He was itching all over. He was uncomfortable, moaning, crying out. He couldn’t tolerate the meds he needed in the form available.
I was not providing him the quality of care I promised. He was suffering.
12/
The nurse came Friday. His rectal foley had leaked. The skin on his back was torn. I couldn’t reposition him safely alone.
Hospice decided he was only eligible for care 3x a week. I wouldn’t have daily help until he was a week from death - how that was decided?
The nurse came Friday. His rectal foley had leaked. The skin on his back was torn. I couldn’t reposition him safely alone.
Hospice decided he was only eligible for care 3x a week. I wouldn’t have daily help until he was a week from death - how that was decided?
13/
Respite services weren’t available on short notice.
On Saturday, he lost the ability to use a straw. I had a 1mL syringe. Benadryl dose=20mL.
I gave him meds slowly, but on Sunday he started choking. It didn’t get better. There was a rattle with each breath.
Respite services weren’t available on short notice.
On Saturday, he lost the ability to use a straw. I had a 1mL syringe. Benadryl dose=20mL.
I gave him meds slowly, but on Sunday he started choking. It didn’t get better. There was a rattle with each breath.
14/
It worsened with water or meds. He refused the moist sponges.
He was so clearly suffering.
I called, a nurse came out.
Fever of 103. BP was incredibly low.
I tucked a pill for the secretions in his cheek.
It worsened with water or meds. He refused the moist sponges.
He was so clearly suffering.
I called, a nurse came out.
Fever of 103. BP was incredibly low.
I tucked a pill for the secretions in his cheek.
15/
There was Tylenol in the med kit but I couldn’t use it. We bought liquid Tylenol, dose = 30mL. We never managed16 a full dose.
I asked about a fentanyl patch for the pain. “Not sure if we can do it with the rash. Check in with your regular team on Monday.”
There was Tylenol in the med kit but I couldn’t use it. We bought liquid Tylenol, dose = 30mL. We never managed16 a full dose.
I asked about a fentanyl patch for the pain. “Not sure if we can do it with the rash. Check in with your regular team on Monday.”
16/
We suffered together Sunday night.
I heard everything breath-knowing I couldn’t give him meds to ease his suffering,that if I did he would cough/struggle to breathe. Knowing that I’d signed to withdraw the care that might have helped, that on some level I’d caused this.
We suffered together Sunday night.
I heard everything breath-knowing I couldn’t give him meds to ease his suffering,that if I did he would cough/struggle to breathe. Knowing that I’d signed to withdraw the care that might have helped, that on some level I’d caused this.
17/
Knowing that if I had a real job, I could pay for a facility, that he could receive meds by IV.
Monday, he seemed better. His nurse and aide were there. We bathed him (foley leaked again), dressed his wounds. They’d be back Wednesday. Insurance covered 3x/week for ~30min
Knowing that if I had a real job, I could pay for a facility, that he could receive meds by IV.
Monday, he seemed better. His nurse and aide were there. We bathed him (foley leaked again), dressed his wounds. They’d be back Wednesday. Insurance covered 3x/week for ~30min
18/
Things changed. 2pm called to f/u about fentanyl patch. They couldn’t figure out if it would work before the pharmacy closed.
His breathing worsened. Tucked pill for secretions into his cheek.
I was helpless.
All the meds were there, useless. He suffered, moaned.
Things changed. 2pm called to f/u about fentanyl patch. They couldn’t figure out if it would work before the pharmacy closed.
His breathing worsened. Tucked pill for secretions into his cheek.
I was helpless.
All the meds were there, useless. He suffered, moaned.
19/
We continued to suffer together.
Both helpless.
I was useless.
Words did not comfort him, reading, quiet, hand holding, stroking his head, sitting by him, giving him space. None of these things significantly helped his pain and suffering.
We continued to suffer together.
Both helpless.
I was useless.
Words did not comfort him, reading, quiet, hand holding, stroking his head, sitting by him, giving him space. None of these things significantly helped his pain and suffering.
20/
He moaned, struggled to breathe.
His breath changed. I knew the pattern from class, counted his respiratory rate, tucked in another pill for secretions.
I saw then that none of them had dissolved. His mouth was too dry to dissolve the only meds I could provide.
He moaned, struggled to breathe.
His breath changed. I knew the pattern from class, counted his respiratory rate, tucked in another pill for secretions.
I saw then that none of them had dissolved. His mouth was too dry to dissolve the only meds I could provide.
21/
He died Tuesday. His doctors were right. It was less than a week.
More & more people are requesting to die at home, people want comfort and quality of life at the end.
Although an important option, my approach with future patients about hospice has fundamentally changed.
He died Tuesday. His doctors were right. It was less than a week.
More & more people are requesting to die at home, people want comfort and quality of life at the end.
Although an important option, my approach with future patients about hospice has fundamentally changed.
22/
I will not simply recommend hospice, I will discuss it.
- I will ask the family about support.
- I will consider whether the meds can be taken as provided.
- I will recommend respite care/support services.
- I will try to find the best option for patient & family.
I will not simply recommend hospice, I will discuss it.
- I will ask the family about support.
- I will consider whether the meds can be taken as provided.
- I will recommend respite care/support services.
- I will try to find the best option for patient & family.
23/
I will not simply push hospice assuming that it’s the best option.
Things are never that simple.
Thank you for reading. I want people to know how hard it can be for families & speaking from experience felt like the best way.
Hopefully, this will start needed conversations
I will not simply push hospice assuming that it’s the best option.
Things are never that simple.
Thank you for reading. I want people to know how hard it can be for families & speaking from experience felt like the best way.
Hopefully, this will start needed conversations
