As you might have guessed, the past couple of days have been busy. Something had to go and that something was blogging.
While I have a moment, I wanted to update you on the job search thing. Although I don't know how much closer I am to finding out what I want to do, I have at least been having fascinating conversations with some really interesting people as I do informational interviews.
Here's how that works: I'm talking to a friend and explain in the course of conversation that I'm thinking about such-and-such a field; and that person says, "Oh, I know just the person you should talk to!" It's amazing.
I was having dinner with Lorin and her husband a couple of weeks ago and told them I was thinking about doing work with hospice. And Lorin's husband, Chris, said, "Oh, I know just the person you should talk to!" So the next week, I met Chuck Cole who is a consultant for skilled nursing facilities ("sniffs" I learned they are called).
Chris had been very coy when he introduced us via email and so when Chuck asked me what my story was, I told him I was an Episcopal priest looking to make a career change, possibly into non-profit administration. Chuck just laughed and said, "Well, that changes the direction of our conversation."
Turns out, Chuck had been a Baptist minister. He had been working at a church in Modesto that grew by leaps and bounds in the 1970's when he was outed to his congregation and forced to leave. He moved to San Francisco in 1977 and got involved with the MCC. Then the AIDS crisis hit--what was then called GRID.
Before he was a minister, Chuck had been an RN. With his medical background and connections to the gay community, he was named part of Mayor Dianne Feinstein's task force on AIDS. And as a result of that, he helped establish what we now know as the hospice program in the United States. Not that he was getting paid much for that; he was doing consulting work for AT&T and other companies during the day and doing this work at night. I can't imagine how exhausting that must have been--physically and emotionally. He told me that by 1995, he had held durable power of attorney for something like 80 people and had been the executor of over 60 estates. I cannot imagine.
But these programs became the model for hospice programs throughout the United States. During the 80's, Medicaid came and looked at what they were doing and included it in their coverage; you don't get much more mainstream than that. Of course, it's very mainstream (and well-regulated) status means there is not much of a future in hospice administration as a career. That's all right. It's as good to know what not to pursue as to have new leads to follow.
A few thoughts about this: first of all, I had no idea how much we owed the gay community for the quality of our life and death in contemporary America. It had never occurred to me that hospice came from somewhere. I didn't know that it was in great measure instigated by the AIDS crisis.
Secondly, I was so encouraged by this meeting. I was reminded of the book of Esther, being put in place "for just such a time as this." Or perhaps more appropriately Joseph. Because how would you have guessed, after being kicked out of your church and finding yourself unemployed in San Francisco, that you would be just the right person to help at just the right time. It cannot have felt like that.
Plain and simple, this interview gave me hope that, though I don't know what I will be doing in a year's time, what I have done and who I am will have prepared me for the next thing. Does that make sense? I hope that I too will be able to look back in future years and see that I was just the right person in the right place at the right time to do what God has put me here to do. Whatever that might be.
Thank you, Chuck, for your encouragement. I hope I got the gist of your tale right. It meant a great deal to me to talk to you.
Onward!
7 comments:
The first modern hospice was founded by Dame Cicely Saunders in Britain in 1967. The first hospice in the United States was founded in Connecticut in 1971.
http://www.yaledailynews.com/news/2008/nov/21/hospice-founder-leaves-legacy/
The first case of AIDS remarked by public health officials in the United States was recorded in 1978.
I remember writing about the woman who established the first hospice in the U.S. when she died. http://teabagsinfusion.blogspot.com/2008/11/florence-wald.html
I'm still amazed it's that recent a development.
And if you're wondering, "Well, then why did you say it never occurred to you that hospice came from somewhere?", my dear Art Deco, the truth is, I do not know why I wrote that. But I'm still blown away to think that the AIDS crisis made such a big impact on how hospice is seen today.
Hospice was not, by 1981, a curio in this country. A proximate relation of mine had hospice - type care (provided by a visiting nurse service) during his last months (in 1979). It was not presented to his wife as an odd thing to do, just one of certain options.
Dame Cicely Saunders was not inspired by the problems faced by AIDS patients, as there were no such patients in 1967. It was the plight of cancer patients which inspired her.
The American Cancer Society puts the death toll from cancers at about 570,000 annually as we speak. The number of people in this country who died from AIDS-related ailments during the period running from 1978 to 2005 was about 550,000 (per the Centers for Disease Control). I do not think your thesis is sustainable.
My mom founded the first home hospice in Sonoma County, CA in 1974. I am deeply grateful for the home hospice that came to our aid when it came time for my mom to die. I think you would be very good at hospice work m'dear.
And, I do think the AIDS crisis contributed a great deal to dying with dignity and surrounded by a loving community rather than in a sterile hospital with people working only to try to deny death.... I am still very surprised in circumstances where home hospice or at least hospice is still not considered normal.
Margaret, have a look at this:
http://www.caring.com/local/hospices-in-garden-city-kansas
The section of Kansas in which this hospice is located is about as far as you can get from a metropolitan center in the continental United States.
I am no expert on hospice care or on the AIDS crisis, so I certainly could be wrong about this.
However, in my own defense, and in support of the thesis that those who died in the AIDS crisis had something to do with the way hospice is currently configured today, a couple of things:
The impression I got (and I know I'm on terribly shaky ground relying on impressions) is that the hospice programs that were developed in response to the AIDS crisis built on and improved on the hospice programs that had come before. It's not that they were the first ones, but that (as I wrote in my original post) "these programs became the model for hospice programs throughout the United States." Again, that is just my impression and I very well may be wrong.
The other thing is that it is indeed verifiably true that hospice care became eligible for Medicaid funding in 1982. http://www.nhpco.org/i4a/pages/index.cfm?pageid=3285 The man to whom I spoke was part of that process; the hospices he helped establish were some of the ones reviewed by the department of Health, Education, and Welfare. Ergo, the AIDS crisis had an impact on the current state of hospice care.
I am sure that I overstated the case in the original post. I thank you, Art Deco, for not letting me write carelessly--which I did. I wrote hurriedly and without much thought. But I do have to stand by the proposition that the hospice programs developed in response to the AIDS crisis have helped shape the current state of hospice in the United States.
I mean, you're welcome to disagree with me, but that's my story and I'm sticking to it.
The other thing is that it is indeed verifiably true that hospice care became eligible for Medicaid funding in 1982.
Federal public health officials identified in the summer of 1981 a complex of ailments (most notably Kaposi's Sarcoma) found unexpectedly in a young adult population as being manifestations of an immunodeficiency syndrome. They checked some records and found a handful of cases with similar symptoms in 1979 and one (at that time baffling) case from 1978. If my memory serves me, this was reported in Morbidity and Mortality Weekly Report in Sept. 1981; it did not hit the papers until the summer of 1982. Congress seldom acts with dispatch unless their own perquisites are threatened and the Reagan Administration tended to be resistant to the expansion of means-tested entitlements like Medicaid. I would wager that change in Medicaid eligibility had been percolating for some time 'ere it passed, and had nothing to do with the appearance of AIDS.
Hospice care is not well adapted to the presentation a broad array of ailments that cause death. (Manifestations of atherosclerosis generally cause sudden death, for example). The name of the game in caring for a cancer patient is pain control. A different repertoire one assumes is necessary in caring for AIDS patients, so yes, there would have to be supplementary adaptations to extant models.
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