30 y/o paraplegic dying from decubitus ulcer...

[Jo Dirt]

I'm sorry this is very long but please bear with me...

I was sent out recently to do an admission for HH on a young man who was paraplegic from a car accident. He had orders for catheter care/change and wound care three times weekly.

I went out and changed his catheter and noticed a small amount of blood on the catheter when I pulled it out. The caregiver (his SO) said the catheter hadn't been changed in well over a month and this happened when he went too long between catheter changes, since I didn't notice any further bleeding I just made note of it and went on about my business. She also mentioned he had a fever the previous night but when I checked him he was afebrile.

When I mentioned the dressing changes the cg said they only do wet to dry gauze and that it is a major deal to change the dressings, which she had been doing every three days. She said he would have to put his O2 on for about 45 minutes...at her request to wait until the wound care nurse would come out to help the next day I did not pursue the matter.

When the wound care nurse came out the next day she was horrified to see the decubitus ulcer on this man's lower back and buttocks. He is a big guy and the wound was the size of two large hands, you could easily fit a whole roll of kerlix in the wound with plenty of room left. But what was very disturbing was when she noticed the deep tissue involvement and saw what looked like a rubber tube with a bulb on the end; the bedsore had eaten its way through the intestines and bladder, what she was actually seeing was the catheter and bulb inside his bladder. She told the couple she was going to be frank with them and that he was going to go septic and die soon if he didn't get to the hospital. So they called the ambulance. This was several days ago. We got news from the hospital today that he is in ICU with plans to be sent home under hospice care.

This is so sad, because I remember how the three of us really clicked--we were laughing and cutting up like old friends when I did the admission and I was looking forward to coming out for visits. Now to find out the guy is dying is hard. I even think I'm in some denial...I'm thinking maybe... and if they can just...even though intellectually I know this man is seeing his final days emotionally I don't want to accept it.

How would you approach this situation? What do you do and say as a hospice nurse when you go out for the first visit? The guy was so bright and still full of life and I know he and his SO are taking this hard.

[medsurgnurse, RN]

so did he have another agency prior to admission to you? how did it get so bad?

[DutchgirlRN, ASN, RN]

That was my first thought. how did it get so bad? Where was his Dr in the progression of this monster decubitus? Is he septic? Is there absolutely no hope?

I can't believe the wound care nurse would be so bold to say he's going to be septic and die! She should of been more professional and sensitive to the pt and SO. I would discuss it with her.

I can't advise you how to deal with it personally, that will have to come to you when you see him next. You'll find the strength and compassion. I took care of a young quad for 3 years who died because he was accidently dropped on the floor and broke his brain stem. The horror of it was AWFUL. His parents took no actions against the hosp because they felt like he would not have wanted it and I have to agree. He was a remarkable person.

He's been gone for 5 years now and I think of him very often and still dearly miss him but I am comforted knowing that he is free from his bodily prison. He never complained or felt sorry for himself but his life was not an easy one. One night I was particularly tuned into him, talking to him alone in my room, and I got the sense that he said to me "Knowing what I do now, I wish I had been dropped on my head years ago". Death is sad for those of us left behind. The departed are doing just great! I wish you blessings in dealing with difficult situation.

BTW...when is your baby due?

[Jo Dirt]

They said three other HH agencies had been in before us and they weren't satisfied with any of them.

Apparently, the doctor who agreed to take on his case had not seen him yet and was supposed to see him this week. But I know they said the patient had tried a wound vac and the girlfriend said it was too hard on him. The patient told me the only dressings he would allow were wet to dry. I think someone should have been frank with him a long time before we came into the picture. The wound care nurse is a very kind person and I know she wasn't trying to lord her knowledge over them but knowing they didn't realize how serious the situation was I imagine she felt the need to be bold with them.

I know his condition didn't get this way overnight. It seems there was some kind of neglect along the way. But perhaps when the family is not willing to go with the suggested therapy there isn't much else that can be done.

I can sense a lawsuit coming out of this, though.

[caroladybelle, BSN, RN]

Didn't Christopher Reeves die of sepsis from a decub?

Some patients are not complaint with care guidelines to prevent decubs. And some occasionally are tired of the life that they have as paras. They may dismiss HCWs/agencies that do not tell them what they want to hear. As such, without knowing all the details, it is hard to assess what happened nor who caused what.

Chart carefully.

[muffie, RN]

how sad

[gitterbug]

A tragic but often repeated story. I hope this young man and his family find peace.

[medsurgnurse, RN]

They said three other HH agencies had been in before us and they weren't satisfied with any of them.

Apparently, the doctor who agreed to take on his case had not seen him yet and was supposed to see him this week. But I know they said the patient had tried a wound vac and the girlfriend said it was too hard on him. The patient told me the only dressings he would allow were wet to dry. I think someone should have been frank with him a long time before we came into the picture. The wound care nurse is a very kind person and I know she wasn't trying to lord her knowledge over them but knowing they didn't realize how serious the situation was I imagine she felt the need to be bold with them.

I know his condition didn't get this way overnight. It seems there was some kind of neglect along the way. But perhaps when the family is not willing to go with the suggested therapy there isn't much else that can be done.

I can sense a lawsuit coming out of this, though.

I can't see you agency being sued, after all you had the case for one day. If not for you agency he would have been dead sooner and without the time to say goodbye.

I have a relative who has been a quad for 30 years and has never had a decub. If they never start, they never have a chance to get this bad. No special bed or anything, just a regular firm mattress.

[Jo Dirt]

I can't see you agency being sued, after all you had the case for one day. If not for you agency he would have been dead sooner and without the time to say goodbye.

I have a relative who has been a quad for 30 years and has never had a decub. If they never start, they never have a chance to get this bad. No special bed or anything, just a regular firm mattress.

This man said he could only breath in one position, which was Fowler's. The SO said it took about three people to change him and when he had a BM he had to literally sit in it until she could get help...sometimes hours, sometimes all day. I don't even know the full story, though, and since I've never seen anything quite like it I don't quite know what to think, except that the man should have been in a nursing home. The wound care nurse has documented about how the patient admitted to refusing most all options of wound care, and this may help the other agencies if (I say when) the family decides to sue.

[river1951]

Well, every time I've seen a person this young dying from a decub, the story seems to always start with a tale about what the patient would or would not allow. I agree, it is a sad tale but none of us know how life lived this way felt to this patient.....

Hard times. I've been there, it seems to be hardest on rhe significant others, the patient at least is being freed.

[Jo Dirt]

Well, every time I've seen a person this young dying from a decub, the story seems to always start with a tale about what the patient would or would not allow. I agree, it is a sad tale but none of us know how life lived this way felt to this patient.....

Hard times. I've been there, it seems to be hardest on rhe significant others, the patient at least is being freed.

I can't even imagine the misery this patient lived with. I think there are things worse than death and I would not want to live my life paralyzed.

But I don't think lawsuits will help anything, though.

[a21chdchic]

When you work in Hospice you learn it is necessary to be brutally honest. It sounds like this nurse who was brutally honest did this patient great justice, and it sounds like she is experienced. She got the patient who has very specific ideas about the care he will and will not allow, to agree to go to the hospital. And now, he has been discharged with Hospice to make him as comfortable as possible. This is what we do best. If there were more honest Professionals out there, there would be a lot more people who could die at home with dignity. Most GP's are unskilled in the management of chronic pain, and therefore tend to be stingy with the meds to keep patients comfortable. We are the palliative care experts, it is our primary goal to keep our patients as comfortable as we possible can. If somebody isn't honest with these patients, they are not usually knowledgeable enough to know they are going to die, so someone has to tell them. Experienced professionals, regardless of what is behind their name, know when womeone has a condition that they cannot live with for a very long period of time. So it is their responsibility to be honest with these patients/families. Home Health and Hospice nurse's are used to working with a lot more autonomy than a hospital or LTC nurse, so we tend to be more comfortable being what some consider to be bold or brutally honest. There are times when people don't want to know certain things, though. At those times I will ask them, "how honest and forthcoming do you want me to be?" And you can tell them a little at a time, if there is time. But there are other times, when you have to be honest to get them the care they need.

Ana