Help with tailbone pressure sores
March 14, 2021 2:38 PM Subscribe
My dad, who is in hospice with metastatic prostate cancer, is suffering terribly with pressure sores on either side of his tailbone. I'm looking for suggestions for topical, pharmaceutical, and behavioral strategies to help relieve his discomfort.
My dad is in hospice for metastatic prostate cancer. He has an L4 spinal compression fracture with severe bone pain. Since he got into hospice a week and a half ago and got on the bigtime opiates (fentanyl/methdone/oxycodone), the bone pain seems to be under better control—but the pressure sores continue to torment him.
The sores are located on either side of his tailbone, where the cancer has metastasized. They are raw, open lesions about 4 cm in diameter. Because they are deep in the butt crack, they rub together when he sits or moves, which is very painful.
Hospice has given us a couple of different ointments, but they have no anesthetic effect and provide only brief relief. Dressings seem to irritate the area worse. We have a variety of cushions to help take pressure off the tailbone, and one of them works fairly well if he sits at the very back and lets his tailbone hang off it.
But a couple of hours into each three-hour dose of oxy he gets uncomfortable and restless and starts asking for a pain pill.
We know that the only real relief for pressure sores is to get the pressure off them. But due to the bone pain—and also because he's a big guy with a big belly and sleep apnea—he is phobic about the bed and resistant to lying down.
Instead, he perches in a chair during the day, and sleeps upright in an upholstered armchair at night—which further exacerbates the pressure sores. And so the cycle of pain and restlessness continues.
Questions:
* We're meeting with the hospice nurse tomorrow and are planning to ask for a consult on the meds with the MD who's supervising his case. We're going to ask for something faster-acting than the oxys, like a syrup or sublingual. Any ideas on what else to try in terms of pain meds?
* Any ideas on anesthetizing topical treatments for open sores? We were told that anything with topical anesthetic would burn and be irritating to the sores. Is that true? Is there anything topical could we ask for or buy?
* Any behavioral tips on getting a stubborn patient who resists lying down to make the transition from chair to bed?
Thank you, MeFriends.
My dad is in hospice for metastatic prostate cancer. He has an L4 spinal compression fracture with severe bone pain. Since he got into hospice a week and a half ago and got on the bigtime opiates (fentanyl/methdone/oxycodone), the bone pain seems to be under better control—but the pressure sores continue to torment him.
The sores are located on either side of his tailbone, where the cancer has metastasized. They are raw, open lesions about 4 cm in diameter. Because they are deep in the butt crack, they rub together when he sits or moves, which is very painful.
Hospice has given us a couple of different ointments, but they have no anesthetic effect and provide only brief relief. Dressings seem to irritate the area worse. We have a variety of cushions to help take pressure off the tailbone, and one of them works fairly well if he sits at the very back and lets his tailbone hang off it.
But a couple of hours into each three-hour dose of oxy he gets uncomfortable and restless and starts asking for a pain pill.
We know that the only real relief for pressure sores is to get the pressure off them. But due to the bone pain—and also because he's a big guy with a big belly and sleep apnea—he is phobic about the bed and resistant to lying down.
Instead, he perches in a chair during the day, and sleeps upright in an upholstered armchair at night—which further exacerbates the pressure sores. And so the cycle of pain and restlessness continues.
Questions:
* We're meeting with the hospice nurse tomorrow and are planning to ask for a consult on the meds with the MD who's supervising his case. We're going to ask for something faster-acting than the oxys, like a syrup or sublingual. Any ideas on what else to try in terms of pain meds?
* Any ideas on anesthetizing topical treatments for open sores? We were told that anything with topical anesthetic would burn and be irritating to the sores. Is that true? Is there anything topical could we ask for or buy?
* Any behavioral tips on getting a stubborn patient who resists lying down to make the transition from chair to bed?
Thank you, MeFriends.
I wondered about hydrocolloid dressings as well.
If you can have a conversation with a wound care specialist, ask about Ammonium bituminosulfonate, which is generally called Ichthyl or ichthammol when you use it on horses or in mild OTC boil drawing salves (and yes, the root word buried in there is bitumen - it is black and tarry and smells like gasoline). Note that I am talking about this kind of drawing salve that is mostly petrolatum and ichthammol and NOT the dangerous quack medicine corrosive "black salve".
I do not think it is generally indicated for large open lesions in humans and I don't know if it maybe would burn in an open sore, but it gives nearly instant relief for unopened boils and skin abcesses, and given that it does tend to "draw" them to come to a head and drain and that doesn't hurt either...it's worth asking an expert.
It's difficult to make anybody do anything; you're going to have to convince and maybe ask for temporary compliance to see if things improve. If you could get him to spend some time on his side during the day in negotiated therapeutic pressure-release periods instead of starting with trying to get him to sleep in bed, that might allow him a little bit of agency and make it easier to try?
posted by Lyn Never at 3:31 PM on March 14, 2021 [1 favorite]
If you can have a conversation with a wound care specialist, ask about Ammonium bituminosulfonate, which is generally called Ichthyl or ichthammol when you use it on horses or in mild OTC boil drawing salves (and yes, the root word buried in there is bitumen - it is black and tarry and smells like gasoline). Note that I am talking about this kind of drawing salve that is mostly petrolatum and ichthammol and NOT the dangerous quack medicine corrosive "black salve".
I do not think it is generally indicated for large open lesions in humans and I don't know if it maybe would burn in an open sore, but it gives nearly instant relief for unopened boils and skin abcesses, and given that it does tend to "draw" them to come to a head and drain and that doesn't hurt either...it's worth asking an expert.
It's difficult to make anybody do anything; you're going to have to convince and maybe ask for temporary compliance to see if things improve. If you could get him to spend some time on his side during the day in negotiated therapeutic pressure-release periods instead of starting with trying to get him to sleep in bed, that might allow him a little bit of agency and make it easier to try?
posted by Lyn Never at 3:31 PM on March 14, 2021 [1 favorite]
I'd ask the team for pain meds that can be delivered via IV drip. They're often just... superior... to their "equivalents" in tablet form.
I'd ask the team about the potential use of lidocaine patches. They come in big sizes.
Perhaps also a sleep aid *that is only "allowed" for patients who are lying down in bed due to safety concerns" would be an angle to try. They also make wider beds that might be more comfortable for him. And any apnea problems would be caught by the monitors he is (and/or could be) on, right?
This may be time for some compassionate fibbing. Maybe even the chair needs to be removed from the room at nights or for a day or two or something. A doctor (or other person with some kind of authority on the ward) should be willing to order such a thing given the suffering your dad is going through.
Wishing you the very best. I am so sorry for what your family is going through.
posted by argonauta at 5:06 PM on March 14, 2021
I'd ask the team about the potential use of lidocaine patches. They come in big sizes.
Perhaps also a sleep aid *that is only "allowed" for patients who are lying down in bed due to safety concerns" would be an angle to try. They also make wider beds that might be more comfortable for him. And any apnea problems would be caught by the monitors he is (and/or could be) on, right?
This may be time for some compassionate fibbing. Maybe even the chair needs to be removed from the room at nights or for a day or two or something. A doctor (or other person with some kind of authority on the ward) should be willing to order such a thing given the suffering your dad is going through.
Wishing you the very best. I am so sorry for what your family is going through.
posted by argonauta at 5:06 PM on March 14, 2021
Best answer: Ask the hospice nurse who their best wound care nurse is - or if necessary call hospice and ask for their medical director, and ask that person to have their wound care specialist see your dad. Be very assertive about this and push for a timeline for when this person will come - should be within a couple days max. Make very clear you want to hear every option for wound care and your top priority is pain relief. And keep calling if there's not adequite pain relief. Hospice aren't magicians, but their main purpose is to increase comfort for your dad and you can be a squeaky wheel about trying all possible creative ideas.
I'm not sure of what specifically to ask for. (Presumably you could use a topical lidocaine at least in the area surrounding the wound bed.)
Also try using a ton of pillows so he can lie in bed in a position between lying on his side and on his belly. Like pillows under right knee, right hip, right shoulder. Getting him off the wounds for as much of the day as possible is really important.
He might try one of those inflatable donut shaped cushions available at drug stores.
posted by latkes at 5:08 PM on March 14, 2021 [1 favorite]
I'm not sure of what specifically to ask for. (Presumably you could use a topical lidocaine at least in the area surrounding the wound bed.)
Also try using a ton of pillows so he can lie in bed in a position between lying on his side and on his belly. Like pillows under right knee, right hip, right shoulder. Getting him off the wounds for as much of the day as possible is really important.
He might try one of those inflatable donut shaped cushions available at drug stores.
posted by latkes at 5:08 PM on March 14, 2021 [1 favorite]
There's something called a ROHO pillow, which is a chambered air-filled pillow you can adjust for comfort. It's often used by people who are wheelchair-bound who are sitting all day. If his doctor mandates he stays off his backside see if they have an airbed or airbed topper for his mattress. The ultimate airbed is a hospital monster called a Clinitron which has tiny pellets constantly buoyed by the bed's fans, topped with a cover and without even a bottom bedsheet (wrinkles can cause sores and in this context would interfere with airflow) so there is absolutely no pressure anywhere. I doubt hospice would have access to a Clinitron; I've not seen them outside a hospital, where they are rented for the patient by the day from a medical bed company.
He should absolutely have the wound-care nurse perform her assessment and suggest treatments and interventions. In my experience if this is hospice care at home you will probably never meet with the doctor, but the nurses, aides, and specialists will assess, order, and perform the interventions at home. It's possible that these sores will qualify him for a stay at an in-patient hospice, so that's something you can ask about.
I wonder if his insistence on being upright in chairs (even to sleep) is connected with difficulty breathing? That's quite often the reason patients with heart disease or lung ailments want to sleep in a near-sitting position, like in a recliner. Perhaps that's something you can ask the nurses about - tey should certainly assess his breathing with a stethoscope and pulse ox.
PS. My aunt was in hospice and insisted on elevating her legs on a stool with pillows. As her condition deteriorated and her nutrition worsened she developed blisters and then sores on her calves. Nothing would convince her to alter her sitting position but the sores eventually caused her terrible pain. And yes, liquid morphine will be supplied to you by the hospice nurses on their first visit. The first goal of hospice is eliminating pain.
posted by citygirl at 5:43 PM on March 14, 2021 [2 favorites]
He should absolutely have the wound-care nurse perform her assessment and suggest treatments and interventions. In my experience if this is hospice care at home you will probably never meet with the doctor, but the nurses, aides, and specialists will assess, order, and perform the interventions at home. It's possible that these sores will qualify him for a stay at an in-patient hospice, so that's something you can ask about.
I wonder if his insistence on being upright in chairs (even to sleep) is connected with difficulty breathing? That's quite often the reason patients with heart disease or lung ailments want to sleep in a near-sitting position, like in a recliner. Perhaps that's something you can ask the nurses about - tey should certainly assess his breathing with a stethoscope and pulse ox.
PS. My aunt was in hospice and insisted on elevating her legs on a stool with pillows. As her condition deteriorated and her nutrition worsened she developed blisters and then sores on her calves. Nothing would convince her to alter her sitting position but the sores eventually caused her terrible pain. And yes, liquid morphine will be supplied to you by the hospice nurses on their first visit. The first goal of hospice is eliminating pain.
posted by citygirl at 5:43 PM on March 14, 2021 [2 favorites]
Ask hospice about a hospital bed with an alternating pressure air mattress. It will have an adjustable head/foot which means he won’t have the anxiety of laying flat, either.
posted by assenav at 5:49 PM on March 14, 2021 [2 favorites]
posted by assenav at 5:49 PM on March 14, 2021 [2 favorites]
Does he have an adjustable hospital bed? That would allow him to set things at the angle that feels most comfortable - he can as upright as in the recliner and he can also adjust the leg/knee setting so that it shifts the way he is sitting on his tail bone. We also bought an alternating air pressure mattress - it plugs into the wall and automatically provides some shifts in the height of the mattress along each column that subtly shifts the patient's position in ways that can ease the pressure.
posted by metahawk at 5:54 PM on March 14, 2021
posted by metahawk at 5:54 PM on March 14, 2021
Isn't there some sort of pillow/cushion that's kinda toilet ring-shaped so the pressure is concentrated on the thighs, not the tailbone? Or is that more likely to be U-shaped?
One idea that he probably will NOT go for is to use a knee-sit chair, once promoted as an "ergonomic" computer chair, where you put most of the pressure on the knees, leaving just a small portion on the buttocks.
posted by kschang at 9:01 PM on March 14, 2021
One idea that he probably will NOT go for is to use a knee-sit chair, once promoted as an "ergonomic" computer chair, where you put most of the pressure on the knees, leaving just a small portion on the buttocks.
posted by kschang at 9:01 PM on March 14, 2021
Found several "hemorrhoid relief cushion" on Amazon for about $30-40 USD, basically donut-shaped pillow with cutouts for the tailbone and the crotch bits. I think the reviews themselves are BS (designed specifically for postpartum comfort? O RLY?) but the listing is at least, reasonable.
posted by kschang at 9:11 PM on March 14, 2021
posted by kschang at 9:11 PM on March 14, 2021
He should be able to sleep in bed comfortably if his sleep apnea is being treated appropriately. I don’t understand why this is an issue for him.
Best of luck to him and to you during this awful time.
posted by SLC Mom at 1:35 AM on March 16, 2021
Best of luck to him and to you during this awful time.
posted by SLC Mom at 1:35 AM on March 16, 2021
This thread is closed to new comments.
posted by 8603 at 2:57 PM on March 14, 2021 [1 favorite]