Sunday, January 13, 2008

How I Got Here

Over at Nursing Voices is a thread where people are describing things they like to do that other people find distasteful. I posted about enjoying providing postmortem care—removing all lines, washing the body, tiding the room…generally preparing the diseased to be seen by their family/loved ones.

There is a very specific reason I appreciate providing this particular service to patients and their families, and it ties very directly to why I became an RN.

I moved to my present location in 1995. Didn’t know anyone here but my cousin L, who I stayed with. Her partner J was involved with Our House, a place that was for people with “end-stage AIDS,” particularly those with no place to live or people to take care of them. People got to “end stage” pretty fast in those days: the first of the antiretrovirals, the protease inhibitors, were just starting to be used, the “cocktail” or more accurately Highly active antiretroviral therapy (HAART) was still at least a year off. The facility didn’t call itself a hospice because they didn’t want to deal with the Medicaid regulations, but in reality that was what it was. It was/is an amazing place – at that time the facility had 10 rooms and over 300 volunteers, nursing staff who worked for a lot less than they could make elsewhere, and the ability to get amazing donations (such as the custom made table for 20 that a local funiture maker made for them).

I moved not having a job lined up, just knowing I needed to get back to the west coast. I didn’t know anyone other than L & J, and decided to volunteer at Our House. Like most people who commit to a specific shift, I started out working in the kitchen. But shortly after I started to work, a new resident, S, came in who was deaf. I had been a sign language interpreter, and they asked me to spend time with S, and act as an informal interpreter when I was there (they hired working professionals for important things, but for the day-to-day communication, it was nice to have someone around who could facilitate communication). This got me out of the kitchen and a lot more involved with the residents, in particular S.

One of the philosophies of Our House was that no one should die alone. There was a list of volunteers who: 1) were willing to sit vigil; 2) wanted to be informed when someone was actively dying; 3) wanted to be informed when someone had died. I was on the list to sit with S when he became active. I stayed with him his last day and night. One of the odder things was that I sang to him – probably at least partly prompted by the fact that he would regularly talk about how when he died he would go to heaven and he would be able to walk again (he had progressive peripheral neuropathy/paresis) and he would be able to hear. I was with him when he died, helped to provide postmortem care, and was part of the procession to the van when the mortuary came to pick him up. As I continued to volunteer at Our House, I become a member of the “Personal Care Team,” basically someone who has CNA level training and could provide direct care to the residents. I continued to provide care, sit vigil, and provide what comfort and support as I could.

Fast forward to 1999. My father is diagnosed with acute myelogenous leukemia. He decides, despite the fact that he is 83 and has a very poor prognosis, to try an experimental chemotherapy. It does not go well, he is quickly hospitalized, becomes delirious, and begins to decline. No one thinks he is going to live very long. I am now managing a CAM clinic and can only go down to see him on weekends. When I am there, I stay in the hospital with him at night. Six weeks after diagnosis, he dies—his symptoms (especially pain) not well controlled, and having received what I see as indifferent care. I am there when he passes. I put on the call light, the nurse comes in, I tell her I think he has died. She checks a pulse and then disappears. Never says a word to me. A while later a doctor comes by and pronounces his death. Again, never says more than ten words to me. I call my mom and sibs to let them know what has happened. I try to get the nurse to take out the lines before my family shows up, and all she does is disconnect the IV. I bully her into giving me some washcloths and a clean gown so that I can make him as presentable as possible before the others arrive.

I am also furious. From my experiences at Our House, I know what a good death looks like. (The Institute of Medicine describes a good death as one “free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients' families' wishes; and reasonably consistent with clinical, cultural, and ethical standards”), and I know my father didn’t have one. It takes me another two years, but I finally realize that what I want to do is be a nurse, and work with those at end of life: do what I can to help as many people as possible have as good a death as possible.

One final note to this story. When I was finishing up my nursing undergraduate work, my final rotation was in the ICU. One of the patients came in with a subarachnoid bleed. After a while, when it was clear that he would not regain consciousness, the decision was made to withdraw life support. I helped with the process and the titration of pain medication to make sure that he was comfortable, and after he passed I asked his nurse (not my preceptor) if I could help with the postmortem care. It felt like I was somehow paying forward for the treatment my father had received.


Anonymous said...

Thanks for sharing this interesting story. I enjoyed reading and relating to it.

Frances Shani Parker
Hospice and Nursing Homes Blog

Barbara C. Phillips, NP said...

Great story...I can really relate. I was at Our House for about 4 years as the Nursing Director. It was the very best job I ever held. Truly life changing for me. When were you there?

Drew Rosielle MD said...

The patient's body, having died, having become a corpse, ceases to have meaning for the doctor who 'had to' come pronounce him or the nurse who probably looked at his dead body and saw only an empty bed that will soon be filled with a 'real' patient.

All of us who care for the dying have observed that as patients die, our 'patient,' that entity for whom we are caring, becomes less a distinct individual (The Patient) and more a conglomerate of patient - family/loved ones - those at the bedside. We talk with those at the bedside (and not the patient), we attend to the emotions of those at the bedside (and not the patient). Not the patient because the patient's ability to talk, communicate diminishes as death approaches. And after the patient has died, the loved ones at the bedside are still there, with the beloved corpse/beloved's corpse, and the patient, our unit of care, hasn't changed, really, at least in the first moments after death, with the still warm body and a family's desire to clean, groom, and re-dignify the dead now that that struggle is over. And, christ, marachne, to have that denied you is brutal, and I guess even more so that you had seen what it was to do it right.

what is most absurd about this is that what you wanted/needed when your dad died was not the nurse to come in there, emote, hold your hand, let your cry on her shoulder, or the doctor to do the same, but what you needed was 1) the nurse to be responsive to your VERY simple needs and 2) the doctor to acknowledge what had just happened. In my experience, this frequently takes, literally, 2-3 minutes. You sit down, you tell the truth, you name emotion, you express sorrow, you ask a simple question about what the bereaved need (if anything). With rare exception, this takes just a few minutes. This is the absurd tragedy of these situations/interactions - it's not that they are unavoidably hard, difficult for the clinicians - it's that (with proper training) they are very very easy (sad, but what's required of us, is actually quite easy).

alphabitch said...

Your father's story breaks my heart; I'm so sorry. Inadequate pain control just doesn't have to happen, yet it is all too common. And as drew notes above, meeting the actual emotional needs of the patient and the others around the patient at the time of death doesn't actually take very much more time than not doing so.

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