Hospice patients who refuse pain meds

lexilou · Apr 2, 2005

I am fairly new to hospice and it seems most patients will gladly accept pain meds. However, I have noticed a few of the patients who are grimacing and appear to be in pain and will refuse pain meds. I would like to "force" these patients to take their pain meds. However, I feel I shouldn't since they are alert and oriented and have the right to make their own decisions. What do you usually do if patients refuse their pain meds? Thanks :)

What I've found is that these patients have already been refusing food and water and want nothing that will prolong their life. They're more lethargic and confused and need to be reassured that the medication is only the help them become more comfortable and nothing else.

letina · Apr 2, 2005

I would like to "force" these patients to take their pain meds.

:nono: Please think about what you say. NEVER even THINK about "force".

Perhaps you could ask the reasons for not wanting to take meds? You say your patients are alert and oriented, so TALK TO THEM!

leslie :-D · Apr 2, 2005

yeah, you can't force anyone to do something against their will nor try to mix it in a drink, ice cream etc.

i've always believed in (1) establishing a trusting relationship w/the pt/family; i make myself available and approachable.

(2) i've had pts who have refused pain meds. i have sat down with them, educated them about the particular med i wanted to give; find out why they didn't want anything (there are sev'l reasons, sheesh) and IF they trust you and feel safe w/you, chances are they'll give it a try if you ask 'won't you try it just this one time to see if it helps your pain?"

again, i can't reiterate enough, is what the impact of a therapeutic relationship can have in making your pt feel safe and cared for.

leslie

allnurses Guide · Apr 2, 2005

Weird - I just posted about this on the Terri thread. I have had one Hospice patient refuse pain meds who died a terrifying death - not in physical pain but emotional pain. She had not made peace with her family, was frightened about what happens after you die, didn't want to die and had not come to terms with dying. She had been diagnosed with CA about two years prior and had done everything to stay alive - including alternative therapies.

It was truly awful.

Another patient who was not hospice but who would not die through sheer force of will because he felt he had done some terrible things in his life which he would not talk about and that he would end up in hell. He fought tooth and nail - looked like a concentration camp victim by the time he did die. The look on his face was terrifying to the staff.

I said this on the other thread, but death, even in Hospice, is not always peaceful and beautiful.

steph

leslie :-D · Apr 2, 2005

but steph, that's my point when i always say that pain comes in many forms.

i've given 50 mg of morphine/hr to a screaming pt....still continued to scream. found out he was afraid of going to hell because he had abandoned his sons years before. so once i tracked down certain family members and got in touch w/one of his sons, his son stated all was forgiven and his brothers had good lives....the pt stopped screaming and died peacefully 2 hrs later.

then i had this other pt who always talked about 'going Home' and would read the bible qd.....yet when her time came, meds given wouldn't touch her and God did she fight it. when it was time for my day off this pt told me that she's not going anywhere. when i returned to work 2 days later, there she was, angry, frightened....i sat w/her and discussed her fears. i had the priest come in: she talked, cried and i told her that God loved and wanted her Home. she finally relented and passed that morning.

so to me, as a hospice nurse, i always address the various forms of fear and pain that people endure. those that die fighting, stick w/me for a long time.

that's why i try to live my life as virtuously and as positively as possible as i don't want to have any regrets when i die.

allnurses Guide · Apr 2, 2005

but steph, that's my point when i always say that pain comes in many forms.
i've given 50 mg of morphine/hr to a screaming pt....still continued to scream. found out he was afraid of going to hell because he had abandoned his sons years before. so once i tracked down certain family members and got in touch w/one of his sons, his son stated all was forgiven and his brothers had good lives....the pt stopped screaming and died peacefully 2 hrs later.
then i had this other pt who always talked about 'going Home' and would read the bible qd.....yet when her time came, meds given wouldn't touch her and God did she fight it. when it was time for my day off this pt told me that she's not going anywhere. when i returned to work 2 days later, there she was, angry, frightened....i sat w/her and discussed her fears. i had the priest come in: she talked, cried and i told her that God loved and wanted her Home. she finally relented and passed that morning.
so to me, as a hospice nurse, i always address the various forms of fear and pain that people endure. those that die fighting, stick w/me for a long time.
that's why i try to live my life as virtuously and as positively as possible as i don't want to have any regrets when i die.

We did try all those interventions with these two particular patients. It helped the patient who wasn't Hospice a little but he just couldn't believe that God would ever forgive whatever it was he had done . . he never was able to share that.

The hospice patient just refused to be helped and believe me we had tried everything . . .some folks just don't want to reach out. She even stopped her family from visiting. It makes me cry to think of it.

steph

aimeee, BSN, RN · Apr 3, 2005

There are many reasons for patient's refusal to take their pain meds. You need to find what it behind the refusal before you can deal with it. For instance, the patient may have a fear of addiction (even if the med is not narcotic!). They may fear that the medication will make them less coherent or groggy. They may fear some other side effect such as nausea. They may equate pain with penance if they feel guilt over things they did in their life. They may equate suffering in silence with virtue. They may feel only weaklings have to take pain medication.

Many people have preconceived notions about morphine that just cannot be dispelled with any amount of teaching or demonstration. Often those folks will readily accept another narcotic, just so long as it isn't the dreaded morphine!

Then there are folks like my Mom. Narcotics just don't agree with her. She feels nauseated and loses her appetite. I'm guessing if she had an antiemitic such as compazine prescribed along with them and allowed herself some time to habituate to them that she would get over that. But it won't ever happen because she has already had too many bad experiences with them and she is not willing to try it again. You also can't give her Tylenol because she had a friend who took Tylenol like candy who ended up dying a nasty death from liver cancer. To her, Tylenol is poison.

Home Health Columnist / Guide · Apr 3, 2005

yeah, you can't force anyone to do something against their will nor try to mix it in a drink, ice cream etc.

i've always believed in (1) establishing a trusting relationship w/the pt/family; i make myself available and approachable.

I said this on the other thread, but death, even in Hospice, is not always peaceful and beautiful.

so to me, as a hospice nurse, i always address the various forms of fear and pain that people endure. those that die fighting, stick w/me for a long time.

There are many reasons for patient's refusal to take their pain meds. You need to find what it behind the refusal before you can deal with it. For instance, the patient may have a fear of addiction (even if the med is not narcotic!). They may fear that the medication will make them less coherent or groggy. They may fear some other side effect such as nausea. They may equate pain with penance if they feel guilt over things they did in their life. They may equate suffering in silence with virtue. They may feel only weaklings have to take pain medication.
Many people have preconceived notions about morphine that just cannot be dispelled with any amount of teaching or demonstration. Often those folks will readily accept another narcotic, just so long as it isn't the dreaded morphine!

Whole hearteadly concur with my colleagues as have seen all of the above in my 20 years in hospice and homecare.

Two additional things to discuss with your patient:

a. fear that "pain will get so bad, no drug will touch it, so I don't want to take medication too early."

Much education about tolerance, titration of meds, various pain meds, co analgesia effect etc. needs to be done.

b. Cost!

Had developed a pain program for one new client who weakly nodded that wife giving him pain meds as prescribed but noticed quick glance to her during conversation. He had Lung cancer and grimaced with movement and cough. As I sat at dining room table to write my notes, noticed bill from pharmacy amongst others on the table. Since family had declined using our pharmacy, wanted to make sure not being fleced on prices: found $750.00 outstanding bill. I gently confronted pt and wife; they were too ashamed to tell anyone and husband didn't want to leave financial burden to family, so was willing to endure pain. Immediately arranged payment of bill and future bills sent to Hospice.

Another client I had with Lung Cancer had survived scrotal CA 20 years prior. So despite a chest wound that drained 2 + cups fluid into ostomy appliance a day, and wearing 3 -125mg duragesic patches, he resisted Hospice despite $1,000/mo narcotic bill which he paid himself-- Medicare Hospice program would have covered pain meds. Even drove his family to Atlantic City for one last time with BP 70/50 despite me telling family high chance of accident. They all survived and enjoyed that last trip. When HE was ready, transfered to Hospice. He died three weeks later with family administering oral morphine hourly OTC to keep him comfortable last 36 hours.

Aimee, your Mom is just like mine! My mother has list of 16 meds that induce anaphylaxis or severe side effects; unable to take Tylenol and refuses to be "addicted" to Roxalox, which is only pain med can tolerate.

Doctor told Mother she was terminal end of October04 due to severe End Stage CHF and O2 dependent COPD. She was eating about 1 1/2 meals max a day past 4 months and sleeping 20+ hours. So in November 04, I had Hospice RN meet with my parents and myself to allay her fears. I listened to 45 minutes of escalating catholic prayers prior to RN's arrival, told I was evil and trying to take over her life against her wishes and force things on her, take all her money--very delusional thinking. My poor father was overwrought emotionally and requesting help bathing Mom weekly, checking her lungs as unable to get to doctors and DAD need advice how to deal with Mom. I brought 3 copies of living will with me since I'm POA, and showed her in black and white how were following HER WISHES. When asked what she'd eaten past 2 days, gave a nice balanced meal speech---all untrue per Dad. Hospice RN allayed many of mothers fears re meds, honoring living will, Medicare paying for Hospice care, etc. Still Mother refused to sign for Hospice. I didn't force the issue as would be too emontionally traumatic to her as would still be deemed competent.

Two weeks before Christmas she rallied, decided she wasn't dying and got up and started cooking light meals, washing dishes and eating 3 meals/day. Was able to write pages of letters to cousins and nieces regarding family history past 3 months. I call my parents 2-3 times a week, maybe once she'll speak with me. She refuses for me to do any hands on care, cleaning in household and rarely allows me to visit as too tired, in pain, sleeping or doesn't want to miss TV show. Despite proving tons of personal care for my Grandparents and Dad's family, I've come to accept what I'm allowed to do for her: provide advice in times of severe health crisis. On my last visit Monday, Dad stated Mom's sleeping alot, delusional at times but was able to have a nice one hour visit with her.

Hope our collective wisdom will help you care for your patients.

Blackcat99 · Apr 3, 2005

Thanks all so very much for your great suggestions :idea: and sharing your personal experiences.

leslie :-D · Apr 3, 2005

blackcat.....

i so agree w/karen and aimee re: education about anything and everything re: drugs, medicare/medicaid benefits..

when it comes to morphine(especially) many pts. equate that w/death.

or fear of addiction; or fear of sedation/not being alert. some pts even think they deserve to be in pain, as a form of punishment.....can't talk them out of it.

it is vital that you tell ea pt the drug, potential se's, why it's being given, how the dose can be titrated to desired effect.

make sure you also have orders for an antiemetic (compazine will make you groggy) and also orders for sennakot/pericolace to prevent constipation.

and most important, no matter how hard you try, there will always be those pts that you can't do a darn thing for, and their autonomy is most important-that they remain in control, however unreasonable it may seem to you.

but i will always, always maintain that the therapeutic relationship is where it all begins, establishing that safety net and trust from the pt.

leslie

Curious1alwys, BSN, RN · Apr 16, 2006

Weird - I just posted about this on the Terri thread. I have had one Hospice patient refuse pain meds who died a terrifying death - not in physical pain but emotional pain. She had not made peace with her family, was frightened about what happens after you die, didn't want to die and had not come to terms with dying. She had been diagnosed with CA about two years prior and had done everything to stay alive - including alternative therapies.
It was truly awful.
Another patient who was not hospice but who would not die through sheer force of will because he felt he had done some terrible things in his life which he would not talk about and that he would end up in hell. He fought tooth and nail - looked like a concentration camp victim by the time he did die. The look on his face was terrifying to the staff.
I said this on the other thread, but death, even in Hospice, is not always peaceful and beautiful.
steph

This totally scares me. I think this is how my father is going to die. They say people usually die as they have lived. How true. :crying2:

I hope when the time comes for me, I can be at peace with it...