Monday, October 15, 2007

Back again

Chaplaincy is stretching me in ways almost beyond words--and I love it. Obviously I cannot post about patients or families that I see so can only talk in generalities, but I have to say I love the dance of communication with a patient or a family, trying to find a language we can share that may allow me to hear a need or offer a support. All families are unique in what is meaningful to them even though there are common themes. I work in an inpatient setting with patients receiving hospice care and many of the patients are far enough along on their journeys that they are unconscious and not terribly responsive, so the families are often the focus of my visits.

I think everyone in any aspect of health care encounters patients and their families who are dealing with the terminal consequences of long-time abuse of alcohol and drugs, most typically via end stage liver disease. For me this situation is particularly sad and hard to cope with, because the dying persons may be my age or younger, and the families are losing a loved one at what "should" be the prime of life. Even more difficult for the relatives and friends, liver failure progresses so silently for such a long time that the terminal illness appears to be sudden and short, so that there is no time to adjust to the impending loss. And, if the alcohol or drug use is a family secret or even has been kept hidden from the family, there is even more chance of shock and horror when the disease becomes terminal. Some patients and families feel ashamed of the fact that the liver failure is caused by what seems to be a behavioral choice that could have easily been stopped. Every form of denial can come to play.

I hate end stage liver disease; the suffering for the terminal patient, if hospice or palliative care is not elected, can be enormous. The failing liver affects other organs in the body so that they shut down. There is tremendous pain. The brain may be affected, causing seizures and dementia. The skin is tremendously jaundiced and the patient's body may be swollen with fluid buildup, meaning that the family is beholding a greatly disfigured version of their loved one. Add that to the apparent suddenness of the disease onset and the speed with which it progresses, and you have reason for enormous suffering and grief for relatives as well. If the relatives and friends are able to accept the role of alcohol and drug use in the picture, then comes the self-recrimination for being either unaware of the patient's use or unable to stop it, and the rage at the patient for not stopping it, and so on and so on.

God can seem utterly absent from the picture. Individual and corporate sin loom large. Some terminal patients have begun their path of substance use by participating in the kind of party culture that is publicized in advertising--only, for whatever reason, these people have been unable to break free. Others have begun the path using alcohol or drugs to cope with stress or hopelessness that comes from poverty or personal loss or the effects of racism or other pernicious effects of the culture at large. Ours is not an easy culture for a person with a predilection for addiction to maintain sobriety. Sobriety is a daily slog, not a quick fix, and the level of change in a person's life required to maintain it may simply be overwhelming.

Against this amount of suffering, platitudes are hopeless and even insulting. A chaplain may come on the scene only in the last few days or hours of the patient's life. For me, the weight of sadness the family brings touches the weight of sadness in my heart for my mother, who was saved a death from end stage liver disease only because she died even earlier, of post-operative complications. So, in a very personal way, I am aware of the years of suffering for the patient and those who love the patient that have gone ahead of those few days or hours.

What to do? I think the family offers the clues. The terminal stage is not the time for a family's theology or denial or whatever to be confronted. If asked for prayer, I ask God's help for what the family is grieving, whether it be the suddenness of their loss, the suffering of the patient, the hopelessness of having tried to help and been unable, whatever. And I affirm the patient as God's beloved child, and each member of the family likewise. And sometimes, all I can do is lament, give voice from the psalms or my own prayer to the helplessness the family feels, the distance from God, the desperate yearning for God to make Godself known, the agony of the suffering. I read Ps 88 to one family and they were deeply touched--yes, that IS exactly how they felt, for themselves and on behalf of their loved one, and to think it was in the Bible, that God actually knew and cared.

I hate end stage liver disease. If any who are reading is at risk for this and can make any changes to lessen that risk, let me tell you: I think the effort is worth it.


Blogger Mother Laura said...

Terri, thank you for this powerful sharing. You are such a gift to those patients and families.

I too found comfort in Psalm 88 after our car accident and the death of my oldest daughter as a toddler.

4:33 AM  
Blogger Jamie said...

Right now I'm watching my husban die from cirrhosis. He was diagnosed a few months before we got married and I often grieve for the time that we don't have. It's good to know that there will be people there to hold my hand as time gets shorter for us. Thank you for all you for the families that God brings you into contact with.

2:00 AM  

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