head and neck cancer end of life care - advice needed.

[jonga]

I have been caring for a head and neck cancer pt in his home for the past 6 months. He has a trach and a G tube and has had extensive surgery, radiation, chemo etc. The last clinical trial has failed and his tumors are progressing. As well as internally they are now presenting externally on his neck and in his ear canal and he has increased facial swelling d/t lymphedema. He is in his 50's and his wife is his primary crg. She is amazing and dedicated and I am trying to prepare her for the worst case scenario with this type of cancer - a massive hemorrhagic event. I have a suction machine, dark colored sheets on the bed and have instructed her to keep plenty of towels on hand. However, this is my first experience with this type of potential death. I'm hoping that I can be there to spare his wife this trauma but, in reality by the time I get there, no doubt it will all be over. No one in my hospice has had hands on experience of this. Is there anyone who has? If so please let me know your experience and any advice you may have. He is a wonderful, proud and brave man and I want to do everything I can for him to have a "good death".

[tewdles, RN]

These are difficult patients, as you well know.

It sounds like you have taken all of the appropriate steps. Focus on the tools you will need to keep him comfortable...the opiates and sedatives, etc.

Sometimes, in spite of our best efforts these patients will have a sudden event involving copious blood and the family panics, calling 911 before calling hospice. Your psycho and emotional support you are providing now is invaluable...keep prepping them for the worst and hopefully all of you will be spared the horror of a terminal hemorrhage.

[Ginapixi, BSN, RN]

you are a good hospice nurse and doing all the "right things"; having the family prepared for the worst is the best and yes often they do panic when they see a lot of blood; i had been called to a death one morning - similar situation- they had called 911 but even they got there too late and there was blood every where! but i think the EMTs made a bigger mess than it would have been; luckily most of the pts who could bleed out usually don't; so having the pt comfortable and the family prepared is pretty much your best bet BLESS YOU

[leslie :-D]

it sounds like you're doing wonderfully.

is he being sedated atc?

i know not all nurses do...

but i like to keep pt calm at all times...so even when bleeding begins, they're not as panicked as they could be.

fwiw, bleeding is a painless way to go....obviously it's the families who it's painful for.

if applicable, dc all meds that can cause bleeding, i.e., coumadin, aspirin, plavix, nsaids, etc.

and keep us updated.

pt/family in great hands.

leslie

[ErinS, BSN, RN]

The only other thought I have is to have some subQ meds on hand to sedate pt. We had a pt with neck ca and we kept ativan and morphine in the home in prefilled syringes and taught caregivers to give subq shot (which of course is easy and nearly impossible to do wrong). We actually were concerned about the hemorrhage, but also blocked airway. This pt actually died yesterday, and he did not bleed or have respiratory distress.

Good luck with this tough case.

[nerdtonurse?, BSN, RN]

If it's possible, get a plastic cover over the mattress unless he's in a hospital bed. I had a neighbor who's hubby was hospice, died as a result of a massive bleed out, and I remember being there after the heorifice had left (she called mom to see if I was home, and mom and I went tearing over until the hospice nurse could get there so she wouldn't be by herself). She was anguished over what to do with the mattress -- he'd refused a hospital bed -- because it of course had a huge blood stain in it. She didn't want to just put it out into the trash for the neighborhood to see, and couldn't think who to call to take it to the dump (my dad and some of the guys from the VFW came and did this last thing for their "brother"). It was a small thing, but it bothered her a lot. She not only lost her hubby, she couldn't sleep in their room until she got a new mattress.

[jonga]

Thank you to you all for replying and your words of support. Sadly I lost my pt yesterday. I was fortunate to be at his bedside at the time of death and thankful because he did bleed. Not the massive, arterial rupture which sometimes occurs but a slow, steady stream through his mouth. Lots of suctioning, ice packs etc. I had been keeping him very sedated and pain free, so I know he wasn't suffering but I was very sad for the family. No matter how much you prepare them for the worst it's a distressing thing to see.