How do you assist one who refuses all medications

[weavrvirgorising]

I am working with a client with Abdominal CA who refuses medications based on her faith. Things went well until the realization hit that faith was not keeping symptoms of persistant diarrhea at bay. Now the client and family has c/o but still refuses medications. I have a boatload of options with transdermal to oral/SL and IV but all I get is complaints with what can you do? Thanks for your input on this very difficult issue! I am beginning to be very blunt, describing what I see, what could come but.... not sure if that is helpful considering the circumstances.

[tencat]

Is it the family or the patient who is refusing the meds? If possible, I'd talk with the patient without family present and ask what the patient wants. You might get a different answer, or maybe not, but at least you will know. Then when family keeps begging you to 'do' something, you can point out that you CAN do something if you can use the medications at hand. Otherwise your hands are tied, and there is nothing you can do other than provide support for the family. I would make that very clear, and I would be very honest about what is coming and what to expect. Good luck.

[rn/writer, RN]

Was this discussed during the admission process? What are her wishes regarding pain meds?

When it comes to a person's faith, you have to tread carefully. That said, you do not need to sugarcoat the truth. You can tell the patient and her family what to expect, and we know that some of it isn't pretty. They need accurate information, both to be prepared, and to evaluate whatever options they consider acceptable.

As nurses, we naturally want to aid and comfort our patients. It has to be difficult to stand by and watch someone suffer what seems to be needless pain and aggravation. And yet, you have to take into account the pain and aggravation she might feel spiritually/emotionally if she were to violate her core beliefs during a moment of "weakness."

I would encourage you to strike a balance between painting an accurate picture and working to offer comfort measures within the constraints that this patient has put in place. You may not be able to give her anti-diarrheal meds, but you can keep her clean and be vigilant about her skin integrity. She might not accept analgesics, but you can hold her hand, massage her, keep other sensory stimuli to a minimum, etc.

In some ways, this reminds me of laboring patients who do not want to be offered pain meds because they really don't want to take them, and they fear that repeated invitations will wear them down and tempt them beyond their ability to resist. If I were in your shoes, I would not want to feel that I'd pressed someone, however kindly and well-intentioned, to make a choice that would leave them feeling physically better but spiritually worse. I would not want to encourage my patient to trade temporary physical relief for guilt.

Having "artificial" limits placed on the relief measures you are allowed to offer is a challenge, to be sure, but in the end, the struggle belongs to the patient. Your struggle is not her burden. And yet, her struggle does, in may ways belong to you. That isn't fair, but it does fall well within the boundaries of a therapeutic relationship.

With all this in mind, please, come here, talk to trusted folks in real life, journal--do something to discharge the tension and sadness that go with this kind of assignment. You have to find ways to express your own longing and anxiety so that you don't--even unintentionally--communicate any kind of pressure to your patient or her family. Make a once-and-for-all decision to give her the right to live her last days the way she chooses even if it defies your understanding, and then renew that choice every day by honoring each new request or refusal in light of your commitment.

I commend you for recognizing your dilemma and asking for help. Please, let us know how you and your patient are doing.

[marachne]

Having "artificial" limits placed on the relief measures you are allowed to offer is a challenge, to be sure, but in the end, the struggle belongs to the patient. Your struggle is not her burden. And yet, her struggle does, in may ways belong to you. That isn't fair, but it does fall well within the boundaries of a therapeutic relationship.

Eloquently put!

[leslie :-D]

Is it the family or the patient who is refusing the meds? If possible, I'd talk with the patient without family present and ask what the patient wants. You might get a different answer, or maybe not, but at least you will know. Then when family keeps begging you to 'do' something, you can point out that you CAN do something if you can use the medications at hand. Otherwise your hands are tied, and there is nothing you can do other than provide support for the family. I would make that very clear, and I would be very honest about what is coming and what to expect. Good luck.

this is truly what needs to be done.

i don't know how many times a pt refuses meds, only to find out it is the family's wishes.

if it were up to the pt, most times they would be taking these meds.

do make sure you have a 1:1 w/the pt, w/o family present, and write applicable nsg notes.

the pt needs to know how not taking these meds, will impact any remaining quality of life.

profuse diarrhea will dehydrate her as well as imposing risks for skin breakdown and nutritional deficiencies.

if she still refuses, all you can do is respect her wishes, and support her in any way possible.

but of course, do offer the meds again, and again.

you need to find that balance between offending her and letting her change her mind.

best of everything.

leslie

[rn/writer, RN]

YES! tencat and leslie are right on the mark. You DO need to be certain that the refusal of meds is coming from the patient herself and isn't just a decision that the family has made for her. They may be assuming this is what she wants, or they may, in effect, be telling her that this (refusing meds) is what she WILL do, but just as it isn't healthcare's place to force meds on her, it isn't her family's place to withhold them on her behalf either.

Your responsibility in all this is to help your patient express her own desires and then help her carry out whatever choices she makes. No matter what she decides, she is going to create a conflict in someone. Then your job becomes to help her live with that part of it. Family members may need to back off. Or you may need to vent away from your patient to keep your own frustration in check.

This kind of situation is such a tight rope in some ways. And yet there is also the opportunity to connect in a deep and meaningful way with someone who is staring eternity in the face.

She is fortunate to have a caring nurse like you.

[mc3, ASN, RN]

Ditto to above. Once you determine the patient, and patient alone, is making the decisionin refusing the meds you have to respect their wishes. One other suggestion, though. Has a chaplain been to see the patient? Sometimes, they work wonders as they can often reach a place we sometimes can't. Or they can collaborate with the pt's spiritual adviser on non-traditional ways of pain relief that would be acceptable to the patient.

It's very difficult to watch a patient suffer, and know you can do something for them, but they refuse. But honoring their wishes is what we're all about!

mc3:nurse:

[weavrvirgorising]

Thank you so much for your kind words. Tomorrow our founder will go with me to make sure that enough has been said but also to validate her beliefs and assure her we will be there to help. I am new to hospice but sure this is my niche, so appreciate your wisdom. Maggie

[weavrvirgorising]

Thank you so much...the decision is the patient's based on her strong beliefs; although now that the symptoms are more obvious there are perhaps fears and doubts getting translated from everybody involved. This forum is wonderful and for a new hospice nurse is a godsend. Maggie

[weavrvirgorising]

Thank you yes the whole interdisciplinary team is involved: Social worker, chaplain, music thanatologist, volunteers, CNA's. As our founder has recently told me, there is always more that you can do-discover it.

[marachne]

Just one last thought from my own experience of very religious patients who do not want symptom relief: As the disease progresses and physical distress becomes worse, yes, patients will sometimes revisit their beliefs and change their mind about what approach works best for them. When that happens, the family is often several steps behind in seeing what "makes sense" at that point for their loved one.

None of this really adds anything to what has been said before -- i.e. make sure you're getting the patient's view and not the family's, continue to offer options and explain consequences, but it may help to frame what is unfolding

[weavrvirgorising]

Thank you for your quick reply. This is a very strong of faith and kind-hearted woman of 88yr old. I could communicate more about what may happen in the disease process but she always refuses meds and says "I'm alright, Maggie." Her daughter just wants to respect her wishes also but wants the best for her Mom. Our founder compares the dying process as being as difficult as the birthing process and it may be that people just don't realize how long it takes. Luckily, the mother and one daughter are very close and can talk about what is happening. Thanks again for your kind words. Maggie