Family refuses care

[NamasteN]

I am torn and want your take on this situation. I have a resident who fell and has a compound fracture of the ankle. She has dementia. Family doesn't want anything done except comfort care. The resident is also hospice care. Being given Roxanol TID, 0.5 ml, and 0.25 ml PRN Q3H. Last night I noticed her leg is red to the knee. The bone is showing at the ankle, the bruise extends to the foot, the ankle is red bruised and swollen. No temp, BP 108/64, pulse 105. O2 sat 93 on room air. I gave her all the Roxanol I could on my shift but noticed no one else is giving the PRN. She was moaning and restless. I am an agency nurse so probably won't be there again tonight.

My question to all of you is this. Is it ok for a family to allow a resident to die of pain and infection? The supervisor says we are managing her pain so that's it. I guess I mean as a human being, take off your nurse hat for a minute, is this ok? I guess casting and setting makes no sense? I just feel so sad about this. What's your opinions?

[KatieMI, BSN, MSN, RN]

It is ok to let a person die. It is not ok to let him die in pain and discomfort if that might be helped.

If patient has dementia and it is bad enough so medical decision power belongs to family member (s), then it is what it is. The family needs to be educated about what is "comfort care" and "hospice care" and that neither means that measures that may quickly help alleviate sufferings, like antibiotics, must be withdrawn just because they want nothing but "comfort care". Likewise, if prescribed pain meds are not effective enough, the dose must be increased till the patient is comfortable. Casting, or rather lightweight fixation could help if moving causes extreme pain.

If your patient is under hospice as well as LTACH care, get hospice people on the case and into the room. They are AMAZING in dealing with families.

[Sun0408, ASN, RN]

What do you mean the bone is showing at the ankle?? Open fx?? Nothing about this situation is ok

[MunoRN, RN]

There is nothing wrong with declining medical intervention. Not all medical interventions are for curative purposes however, and typically stabilization of a fracture can be appropriate purely for palliative purposes, while avoiding more curative interventions.

There shouldn't be anything preventing adequate pain control, and in many states including mine family cannot legally decline pain control in a comfort care patient.

On the face of it I certainly don't disagree with the families wish to avoid aggressive treatment, putting a dementia patient through a surgery and acute hospitalization is often one of the most unethical options available.

[cagjlg]

Nothing here sounds like comfort care. At the least, the ankle should be stabalized and dressed to avoid infection.

[jdub6]

From a hospice perspective: this is a tough one. Whether/to what extent the ankle should be fixed to maximize comfort is different for each pt. I have seen these situations in hospice before (no intervention for serious fx) and often no one will operate on the person due to risk. Most of them have some sort of cast or stabilizer for comfort, some have traction too. Any open wound should be dressed to keep clean, minimize discomfort and contain drainage. To not treat an infection is not unreasonable in some pts with severe dementia or, say, terminal cancer. But to not control pain in this situation is NOT acceptable, ever. The pt needs meds adjusted and if you cannot do it in your facility due to provider discomfort, policy, etc perhaps this person should be transferred to a hospice facility?

[CryssyD]

If you think the patient's pain is not being adequately treated, you should definitely bring that up. The family may not be aware that splinting or casting the ankle will help with the pain. I think it's OK to refuse surgical intervention, but comfort/pain management is the patient's right; she shouldn't have to suffer. Never be afraid to stick up for your patients, especially when they can't stick up for themselves.