Thursday, January 24, 2008
Recent conversation during a "toxicity check" (assessment of patients ability to continue to receive chemotherapy):
NP: "If something should happen and you were unable to make your own decisions, who would you want to speak for you?"
Patient: "My wife."
NP: "And she knows what you would want? What kind of decisions you would make?"
Patient: "Oh yeah."
Patient's wife: "Oh no I don't!"*
Unfortunately, this is more the norm than the exception. I remember at the annual hospice conference last year there was a presentation of study that involved health care proxies, and the majority of the participants didn't even know they'd been named as the medical durable power of attorney until their loved one was incapacitated and they were being asked to make decisions! (apologies for not being able to cite the study or the presentation, all I can remember is that it was presented by R. Sean Morrison -- if anyone knows the study I'm talking about, please let me know!)
Think of this as a wake-up call: if you have strong thoughts about what kind of care you'd want in a life-threatening situation (and if you don't, you should start thinking about it), talk to the people people who would be making decisions for you if you can't speak for yourself. You owe it to yourself, and to them.
*I can't help but wonder if this sparked a conversation between them about this. I sure hope it did, but I'm not confident that's the case. As it wasn't my visit (I was observing E.) I didn't pursue it.
Sunday, January 13, 2008
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.
Thursday, January 10, 2008
Saturday, January 5, 2008
Some background here is required (bear with me for a minute)
- March 3rd, 2004: Multnomah County, Oregon starts to issue marriage licenses to same sex couples.
- March 5, 2004: my partner and I join the around the block queue in the rain and get married.
- November, 2004: Measure 36 passes 57% to 43%, amending the Oregon State Constitution to state that “only a marriage between one man and one woman shall be valid or legally recognized as a marriage.”
- April 14, 2005: the Oregon State Supreme Court rules that the licenses issued by Multnomah County to same sex couples are void (i.e. I got “unmarried” by the state).
- May 9, 2007: A new domestic partner bill that was passed by the state legislature is signed into law by the governor, making discrimination based on sexual orientation and gender identification illegal, and instituted domestic partnerships, with almost all the rights and responsibilities of marriage, available to same sex couples. Both laws were to go into effect on January 1, 2008.
- An effort is started to get initiatives on the ballot to overturn both these laws. The initiative efforts fail, however the anti-domestic partnership signature drive is only 96 signatures short.
- Friday, December 28, 2007: an out of state group, the Alliance Defense Fund manages to get a U.S. District judge to put a hold on the domestic partnership law (the argument is that the state’s review process was flawed, disenfranchising citizens who had signed petitions). There will be a hearing on February 1.
So what does this have to do with a consult in November? This consult was with “J.” who has a life-threatening terminal illness with an uncertain trajectory and increased frequency of exacerbations (9 ED visits, 7 hospitalizations since July). While he was “well known to the Palliative Care service,” there was a question of capacity. It being right before Thanksgiving, there was only two of us on that day: the N, the PCT MD and me. N. asked me if I knew how to do a mini-mental status exam (MMSE) and when I said “yes” asked if I would do a screening with this patient, as well as anything else that might be helpful in terms of discussion of goals and education about hospice. N. described the patient as a “talker” and it was pretty clear she didn’t want to get caught up in a long involved conversation. I went, and we wound up talking for three hours! It felt like such a gift to be able to give that time to this person who clearly needed company.
Before I went, N. commented that she thought the patient might be gay. Reading through his notes it was pretty clear to me that he was, but figured I’d just go and let the meeting unfold as it would.
As we were talking, I found out that yes, he was gay, and lived with a very supportive partner. As the conversation continued, I tried to help him with some goals clarification. At first he couldn’t think of anything that he wanted to achieve, and he mostly mourned the loss of function he had experienced. But as we were talking, he did come up with one thing: he wanted to make it to January so that he and his partner of 20+ years could register their relationship. It seemed to be a good thing that he was able to come up with something definite to look forward to.
Fast forward to New Year’s Day. I’m talking to some friends at my annual New Year’s Day open house, and I suddenly think of J. On top of my own sorrow and anger about not being able to register my relationship, I feel an overwhelming sadness at the thought that J might not be able to achieve this goal—all because of a few ugly, hateful people.
On Wednesday, January 2nd, there was supposed to be several grand celebrations hosted across Oregon by Basic Rights Oregon to celebrate the new laws. These celebrations were turned into candlelight vigils. My partner met me at the one in town. There were the usual speeches by politicos, but at the end there was a short “open mike” for anyone who wanted to talk about how the situation impacted their lives. I decided to talk about J and his plight—how this delay may be more than just a delay for someone like him with a limited time to live. The story was well received, and several people thanked me for sharing it.
A lot of end-of-life care involves bearing witness, and I've done my share of fulfilling this role. A lot of social activism involves speaking up and not being silenced, and I spend a lot of time trying to meet this aim. I’ve been doing EOL care for about 10 years now, been a social activist for over 30 years. This is the first time I have seen those two parts of my life so clearly , and painfully, linked.