HELP!! What about what the PATIENT WANTS?????

[AtlantaRN, RN]

Marketer calls office, need to eval pt at local hospital-SEE IF SHE MEETS GENERAL INPATIENT CRITERIA,

dtr wants nh placement........

I meet md coming out of patients room, md states "does not want hospice..." dr writes note stating

patient understands she has stage IV ca, has had life threatening reactions to previous treatment, still

wants aggressive treatment, does NOT want to be made comfortable. Note even states patient wishes

to be referred to local "teaching" hospital well known in Georgia for clinical trials.........GI doc who visited just

1 hr prior writes "patient wishes to be followed by oncology for aggressive treatment??" and STILL writes

and order for hospice.....WHAT ABOUT WHAT THE PATIENT WANTS?????? Even if it is futile......

would you insult this pt by going in the room and trying to sell her on hospice, right after she has

emphatically expressed her wishes to the physician?????? I won't.......I read the note to my manager and told

her i would not insult the patient by trying to sell her on something she emphatically does not want.......

now, I will follow up on saturday and sunday with calls to the hospital, but I refuse to insult this patients

intelligence just because the daughter wants nursing home placement.... They have totally removed the

patient wishes out of the picture. even the case manager at the hospital writes what DAUGHTER wants....

but never consulted with the patient. Primary nurse states patient is alert and oriented.

Thank you for your input.

[Leda1st]

I agree with your assessment. Just because a pt meets the PHYSICAL criteria for Hospice does NOT mean that they are appropriate for Hospice. As with any medical treatment/service, a patient has the right to refuse Hospice.

Having said that, however, I will also say this: it is probably not a good thing to just leave the pt alone until she "changes her mind". Sounds like she needs some very sensitive, caring person to provide some gentle education to her about what Hospice can do for her. This can be presented in a very respectful way, making clear to her that you understand that she does NOT want Hospice now, and that you are in no way pressuring her to participate. You can present it as an option, just like Chemo/radiation or the experimental treatments. She sounds like she is very scared (understandably so), and in denial about her disease. She needs to be allowed to BE in denial and to experience all the other phases of grief related to receiving such a devastating diagnosis. Her family may be more realistic about things than she is, but unless she has been declared incompetent, SHE should have the right to make decisions for herself -even if those decisions do not seem at the time to be the "right" ones. I would talk with one of the social workers and/or chaplains in your agency about the possibility of talking with her and with the family. Again, just to PRESENT INFORMATION to her so that she knows "all of her options" or whatever. It needs to be very non-threatening to her, and then left up to her. Most likely, she needs some time to process what is going on with her, and she may even NEED (from a psychological/emotional perspective) to put herself through grueling things like chemo/radiation and/or experimental treatment for awhile before she is able to arrive at a place emotionally/mentally where she is ready to "let go". She may suffer terribly for awhile, and this will no doubt be very difficult for her family, but SHE is the one with cancer. She has been told that something has taken over her body over which she probably has little to no control. In that situation, I can understand the desire to "take control" over the disease, even if it is most likely a futile process.

As a nurse in Hospice, this is why I value my social workers and chaplains SO MUCH. Medically, this girl is appropriate for and would benefit from Hospice. But she is just "not there yet". Perhaps they can/should be the ones to talk to her instead of someone with the title of "nurse" or "marketer".

I hope all my rambling hasn't confused you more. Basically, I wouldn't "sign her up" today or whatever. But, I wouldn't totally leave it alone either. As I said, I would find a way to gently present Hospice as something available to her should she choose to use it.

Just my .

[tencat]

I agree with OP. You can lead a horse to water....etc. If she's flat out refusing hospice, no point in going in there and doing a song and dance sale on the joys of hospice....JMHO. Either one is ready or one is not. If not, then support their wishes and move on. This lady wants everything done. Let her do that if it will make her feel better. It sounds like others have already given her advice and info on hospice, and she's not ready to learn more. But keep tabs on her as she could always change her mind.

[AtlantaRN, RN]

She didn't want to see me today, i called one of our chaplains, she said she would follow up on monday. The problem I had friday was doc just came out of the room and I didn't think it was right to do my "song and dance" when doc wrote in quotes "does not want to be made comfortable....wants aggressive treatment, even clinical trials...." ((Marketing wanted to meet gip so they could get her to a contracted facility on friday because no nursing home responded with a bed on such short notice)).

I just get so frustrated when they NEVER ASKED PATIENT, until that last doctor visited.... At least she asked...............

thanks again, i was just on a rant

[ErinS, BSN, RN]

This is a hard one. My one though would be- even if she wants to continue clinical trials, does she want to be a full code. We often will have patients that were determined not to be on hospice, but once they understood that they could still pursue clinical trials, and that hospice could minimize invasive procedures at end of life and provide support to the family, many have changed their mind, and we build a plan of care around the patients wishes. I have found that often doctors are pretty terrible at really listening to what a patient is saying, and a lot is lost in translation. Another benefit to discussing hospice with this patient would be that she may be able to stay safely at home with hospice help. Again, this is a hard case, and would be very patient dependent.

[caroladybelle, BSN, RN]

The other issue is if she is very sick (in need of NHP), she may very well be declined for clinical trials and "aggressive" treatment.

Many of the teaching facilities that I have worked for that do clinical trials (I used to work in GA and am familiar with at least one well known one there), have strict guidelines and requirements for research pts. And often if they are seriously debilitated, they are not deemed appropriate for research. Many such facilities also have a bit more leeway to say that it may not be ethical to treat a pt. Just because there is a treatment available does not mean that it is right or ethical to give it to pt in many circumstances. It does not matter if the pt "wants" more treatment and will consent, if there is nothing medically and ethically appropriate to offer them.

(A caveat, like some surgeons, some MDs will treat anything, even if it is not appropriate or in the pts best interest. However, many of your teaching facilities are stricter and research often holds them them to stricter ethical standards)

I suspect that the MD may know that there is indeed in all likelihood no further treatment that will be forthcoming because of the pts illness. But No, you cannot force yourself on this pt.

[tewdles, RN]

I would speak to this patient...tell her that the doctor ordered a hospice evaluation and confess to her that you are there to discover what she thinks and feels and to give her information. I would try to meet with her AND her daughter. I would invite the MSW on the case to join the meeting.

There is nothing wrong in providing useful information to the patient and daughter and gathering information about the patient and her personal situation. In fact, I would suggest that you are in the position to do what nurses are trained to do...communicate, educate, advocate...

She may well refuse hospice services...that's okay...at least you will know that she does, in fact, have the information available to her...and you can feel good about your part in it. And then you can write a note in her chart which clarifies her goals.

You, hopefully, will have created good will between yourself and this patient/daughter/MD/hospital...and if she decides for hospice later it will very possibly be because of your efforts, and, will likely be a choice for your hospice provider.

Good luck!

[AtlantaRN, RN]

She came on board 4 days after going home. Her pps is 40%, and apparently she can still participate in clinical trials while on hospice......so the marketer says. I guess if it isn't costing her insurance company any resources.....

[AtlantaRN, RN]

Family called 911 because pt declining, (they didn't notify hospice, the emergency room did), she does meet GIP criteria now. Continues to be a full code. To go to a nursing home today GIP

[tewdles, RN]

thanks for the update...sounds like a very sad case

[caroladybelle, BSN, RN]

She came on board 4 days after going home. Her pps is 40%, and apparently she can still participate in clinical trials while on hospice......so the marketer says. I guess if it isn't costing her insurance company any resources.....

Just because Hospice says that she can participate, does not mean that research would accept her as a candidate.

[blueheaven]

Why not present palliative care to pt? Palliative doesn't necessarily mean terminal (even though in her case it appears to be) That way physical needs and symptoms could be managed and she could still receive aggressive treatment as per her wishes. So many times with issues like this, it's the way the DOCTORS present the information to the patient. They don't take time to listen to what is being said by pts. or families. If she goes to a large teaching hospital, they will have a palliative care team that can help to find solutions to these issues.