Palliative care for spiritual distress along the diasease trajectory

[nurseshanti]

Hi everyone,

I'm putting this question here because I believe it does relate to hospice/palliative care, but if someone feels it is more suited elsewhere, then totally feel free to move it.

My best friend's father has had Hep C for several decades and has just now gone into liver failure and is waiting for a transplant. He is very sick (jaundice, fatigue, some internal bleeding and just now some small cognitive impairment... from the build-up of ammonia I believe) and has been in the hospital for several weeks now. This family is like more like relatives to me and he is very much like my second beloved father. He and his wife have been told several times by the physicians that his prognosis is quite good and that he is on the list for a transplant. However, his wife (my best friend's mother) is having a really really rough time with this. She has a very fatalistic outlook on life and is very convinced that it's God's plan that her husband be on his death bed. She has no hope of him surviving this and strongly believes that he isn't going to leave the hospital again.

He is in a small rural hospital across the country from me, so I only hear of this from my parents who call every couple days and from her who I speak with less often. My parents don't feel like this hospital is very supportive of her needs and concerns. I'm asking here because my understanding of palliative care is that it's offered along a continuum of the disease trajectory and her total lack of hope seems to me to be indication of spiritual distress in need of intervention. Also, I worry about it impacting on her own health and on her husband's health.

What do you do for families when they are in this kind of spiritual distress? She has been to all the meetings with the physicians and my own father feels she doesn't necessarily need education about liver failure and it's symp. I just want to be supportive of her and to help relieve some of her burden and I'm not sure how to do that.

Thanks for getting through this post! I appreciate any suggestions and thoughts you may have.

[Audreyfay]

Hospitals have chaplains. It seems to me that they need to see a chaplain, or even the pastor of their church?

[nurseshanti]

I am aware of the option of seeing a chaplain or her pastor. I am hoping though that there is something that I myself can do to help support her through this. It's hard being far away. Plus, her very fatalistic outlook on life is very influenced by her strong belief in God and that He has a plan for her life and that this plan must be that her husband is meant to pass away at this time. Despite the fact that this seems to go against what all the physicians are saying about his prognosis. I'm not sure how helpful/useful her pastor will be to support her through this, when he shares the same faith and outlook on life.

[leslie :-D]

in spite of the mds sharing their very optimistic prognosis with your friend's mom, she still sees the cup as half empty. if my assessment is correct, then i have one of those mothers, very pessimistic. social services needs to get involved somehow because mom needs to concentrate on getting dad better, and spreading that type of positive energy. if the mom truly is a pessimist, then no one or nothing is going to help. if she's truly not hearing what the doctors are saying, then her anxieties need to be addressed. the mom probably should see her own md and get appropriate referrals.

[hospicenurse]

I'm going to play devil's advocate here and say that maybe she is more realistic than anyone else at this point. Although his prognosis may be good if he gets a transplant, that's a very BIG IF. He sounds like a very sick man. Liver transplant is risky and has many complications. And the older he is the more he is at risk. I doubt that your friend's mother is as uncomfortable with her outlook as all the rest of you are. It could be that all of you are in more spiritual distress than she is. It is very frustrating to try to help loved ones from a long distance. Probably the best thing you can do for them is to to stay in touch regularly by phone and visit if and when you can. Send cards and notes. Let them know that you care and that you have hopes that he will get better. Allow her to express her feelings and gently nudge her to see that there is hope. You can help her best by walking with her on the path she chooses, rather than lead her down your own path.

Gail

[aimeee, BSN, RN]

Gail has said exactly what my thoughts were except I just couldn't seem to phrase them. Nicely put, Gail.