Saturday, January 5, 2008

Intersecting worlds: Bearing Witness

Back in November, I did a very interesting, and personally moving consult. More recently, I had a personal experience that brought that consult back to the foreground, and connected parts of my life in ways I never expected.

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.


Drew Rosielle MD said...

Marachne - happy new year - although yours seemed to be bittersweet given the shameful hold placed on the domestic partnership law. Thanks for sharing your and your patient's stories.

Christian Sinclair, MD said...

I agree with Drew, what a great story. I like the phrase "bear witness." It is a very powerful and appropriate one for so much in palliative medicine. I often talk about it in the context of the efforts of family who are holding vigil and not feeling like they are actually doing 'anything' worthwhile to help the patient.

Initially as I was using that phrase I was struck a favorite quote from the classic movie, "The Princess Bride"


Inigo Montoya: You keep using that word. I do not think it means what you think it means.

When I looked it up it really meant to "provide evidence for" or "prove." But when broken apart I think the word "bear" in the context of hold up or support and witness "to give a first hand account" relates well to family and friends (and staff) working with PC patients.

Christian Sinclair, MD said...

Oh and Happy New Year too, and will you be coming to AAHPM/HPNA?

marachne said...

Thank you both for your kind words and interesting thoughts.

I guess I've always thought a part of my job is to provide presence, and yes, bear witness, both for the patients and their families.

And yes, I'll be at the AAHPM/HPNA conference. Hope we get to have another gathering, that was a highlight of last year! (And if we do, I'll do my best to bring the two MD fellows from my program who are coming as well.

Kim said...

You know, you read this in the newspaper, but until you read a personal story you don't understand the emotional rollercoaster that same-sex couples are put through.

To have been "married" and then have it negated is just cruel, period.

marachne said...

Yeah, after a while you get tired of being (metaphorically) punched in the gut.

When the country sent the check back from the registration fees for our marriage in '04, I didn't have the heart to cash it.