accepting death

[beckyjo]

I need advice from experienced hospice nurses. I have a patient that I care for at home. She is an elderly lady with IDDM, Chronic renal failure, Left above the knee amputation the other leg is turning black. the only dialysis access they can get in her is a subclavian. My problem is when I speak to the family they say they know that she is going to die and they just want to keep her comfortable. but thier actions are much different. The daughter refuses to give the pain medication on a regular basis. I have explained to her numerous times the ratioanle for giving it routinely. I questioned her about her mothers acceptance of death. She said that she has had her coffin made for the last 2 years and she has the clothes picked out to be barried in. When i spoke with the son he stated that I was wrong about her wanting to die, he said she still has "zest for life". What am I doing wrong here????? What can I do to help this family? I think they are really going to have a rough time when she dies. This is a Arabic family.

[Agnus]

If memory serves me, they don't not believe a woman shoud have pain relief during childbirth. I suspect the refusal to let the patient have pain meds in your case is probably religious based. You can't resolve the conflet between the family members on their preception of the mother's wishes. If you could, some how connect with people in the Arab community that could explain the culture and beliefs, or perhaps you could find someone, perhaps a social worker who has knowledge and understanding about this. Try calling social services. Perhaps they can help or can put you in touch with someone who can help.

[aimeee, BSN, RN]

Sounds like there might be many issues here and this definitely sounds like a case where a social worker, particularly one with some experience with the arab culture, might be able to make better headway. With this culture perhaps a male social worker might make better headway with the family.

One thought with the pain medicine--are these prn meds that aren't being "regularly given" or are they scheduled? If there is always some pain then a scheduled long acting med would be appropriate. I went to a pain seminar last week and one thing that a speaker (a surgeon who specializes in pain management) said really stuck with me. She said, "Don't make the patient play doctor...tell them when to take it and how much." Many folks are much more compliant if you play on the authority of the doctor saying "Dr X wants her to have one pill at each mealtime."

People sometimes equate taking the pain medication with weakness, or giving in to the disease. When people have these notions it is hard to change them.

Is it possible that you and the son are both right about Mom? I think people can be very accepting of the fact that their health is deteriorating and they are nearing the end of life and yet retain a zest for each day that remains for them. Can you elaborate on just what your question is here? Are you saying that you feel the mother is not wanting any more extraordinary treatment but the family thinks she does?

[SharonHopson]

Many times I see situations like this with my hospice pts and families. I believe that Arabic people associate pain meds with failure or weaknesss. Also, many times I have pts who do not receive needed pain management meds r/t the caregiver worrying about addiction. It takes LOTS of c/g teaching and sometimes MULTIPLE social worker visits. Have you taught the family how to assess for s/sx of pain? Also, many times, if the pt cognitant, the pt will not let the family know they are hurting. Then I show up and the pt tells me how much they are hurting. I find this is especially true when children are caring for a parent. Usually, once the family understands that their loved one NEEDS morphine (or whatever the doc has ordered) they will give it prn.

Good luck,

Sharon

[Mags]

Hi becky.

I would agree with karen. I don't have a lot of experience with arabic community, but know how scared people can be of Morphine. Education is the key!

Mags