STOP MEDICAL BIGOTRIES & DISCRIMINATIONS! Please take a moment to email protest to Hospice of CNY (e-mail: email@example.com):
Tonight, Sept. 19, Hospice of Central New York bosses are holding their 25th-anniversary annual fund-raising bash, described as “an evening of music, dinner, dancing, cocktails and FUN!” Tickets are $125 each; tables reportedly $1,000; and corporations and banks sponsor this event.
By making my experience as a patient, and my life partner/spouse’s experience public, we have learned—to our horror, but not our surprise—that we are not the only ones to have suffered while in the “care” of Hospice of CNY. (see below)
I’m not just fighting for my own life—or for longevity at the expense of principle.
I know that bigotries and discriminations in health care—undocumented migrant workers and their families, oppressed nationalities, religions, sexes, self/gender expressions, sexualities; children, youth, elders, and dis/ablities—systematically deny care to those who are fighting for their lives.
Please take a moment to e-mail your demands to end medical bigotries and discriminations: (firstname.lastname@example.org)
If you feel this is important action for your friends, please repost.
Structural changes are required:
—Medical Director Dr. Setla and Dr. Horst, who demonstrated
bigoted behaviors, must be fired
—new CNY Hospice management needs to
publicly apologize to the LGBT and other oppressed communities
—new CNY Hospice management must announce and make
structural remedies to explain how and why no consumers
will ever face these discriminations and bigotries again
Memo of Protest from Leslie Feinberg
& Minnie Bruce Pratt to Hospice of CNY
September 19, 2014
Suffering a sudden, rapid and steep health decline in late Spring 2013, I consulted with Dr. Joel Potash, Founding Director of Hospice of Central New York.
Dr. Potash recommended admission to home hospice in June 2013. I also underwent an official hours-long interview and examination by Dr. Judith Setla, current Director.
In the opening interview with Dr. Setla, the doctor told me she would “fire” me if I improved; I replied that she wouldn’t have to, I would quit and celebrate. When asked by the doctor if I were suicidal, I replied that I am incapable of hurting myself, and pointed out that I had asked to continue taking medications for infectious diseases during hospice, because my quality of life had improved with these treatments and it would feel like hurting myself to stop.
I stated emphatically during both interviews that my goal was to survive hospice, though I was gravely ill. I entered Hospice of CNY, expecting the care promised in Hospice’s own official guidelines and advertising: “Hospice Treat People 3 Ways: Comfort, Love, Respect” http://www.hospicecny.org/hospice-treats-people-3-ways
Our experience with Hospice of CNY was the opposite of “comfort, love and respect”—instead we experienced unnecessary physical agony, prejudice, and disrespect. In addition, Hospice failed to live up to its own standards of care in relation to management of pain, as listed in “Patient Information on Pain and Pain Relief.”
Here are some (though not all) of the details of the failures of Hospice of CNY:
1) Anti-LGBT+ Bigotries
Dr. Potash told Dr. Setla on the phone in our hearing that we were very concerned about LGBT discrimination, and Dr. Setla told him her agency was “the best” on this, in the initial interview Dr. Setla told me she didn’t understand “what” I am. When I said she could tell her staff that I was a butch lesbian and that we were a same-sex couple, the doctor said they were more used to “the other kind.”
During both interviews (and in a later interview with Dr. Horst), Minnie Bruce and I repeatedly emphasized that I as an individually, and we as a couple, had suffered extreme anti-lesbian and anti-trans* prejudice in my attempts to obtain health care during our more than 21 years together. For instance, Minnie Bruce recounted how in 1995, we were turned away by an emergency room doctor who stated that I had a fever of 105 degrees because I was a “troubled person.”
Though Minnie Bruce and I provided many educationals, neither Dr. Setla nor Dr. Horst seemed to have any grasp or any real understanding of the realities, difficulties, dangers, and complexities of LGBT+ lives in relation to health care.
For example, after six weeks in hospice and after hours of education from my spouse about our lesbian lives, Dr. Horst “changed my sex,” in my Hospice CNY records. Horst reveals her own prejudices and unprofessional conduct when she described me and my body in writing, using a declination of the old bigoted “he/she” epithet—a slur both anti-LGBT and anti-intersexual—to describe me, my body and my life.
I was also told that a home aide would be available who would be good for us since this particular aide had “seen everything—there’s nothing she hasn’t seen” during her many years of service. Yet the Hospice apparently never informed the aide that I am female, and that Minnie Bruce and I are a same-sex couple.
As a result, my spouse had to do all the care of my body for six weeks.
These various phrases were uttered with seemingly no understanding of how completely they dehumanized trans* lives in general, and mine in particular.
Our relationship as a lesbian couple was also accorded no serious respect or care. For instance, when we talked at various times in the intake interview of our grief, love and commitment during this difficult stage of our life together, and when I spoke of how beautiful it was to be loved by a partner who would go through hospice with me, Dr. Setla laughed inappropriately.
In the intake interview, during a discussion of late-stage hospice difficulties, Dr. Setla emphasized quite dramatically and at length the possibility of having to separate me from Minnie Bruce by sending me to hospital or to Francis House residential care run by nuns, and described quite graphically how I would be forcibly restrained. I said if I were taken from our home, then Minnie Bruce or a friend would be with me 24 hours a day if I were in an institution.
Dr. Setla expressed great surprise and skepticism at this necessity—another example of the denial of bigotries by this Hospice director.
I pointed to my own experiences of threats of rape and physical/sexual abuse.
In later conversations with acquaintances who also had experience with Hospice of CNY, these acquaintances exclaimed in surprise at the doctor’s emphasis on how we might “have” to be separated, saying their experience with Hospice was just the opposite—that Hospice often went to extreme lengths to “keep together” members of heterosexual families that were extremely troubled and not necessarily loving.
I am a secular Jew, seeking secular care, and I made clear during the initial intake interview. During the conversation above, about my potential forced removal of from the home to restraints and a hospital bed, Dr. Setla emphasized that an alternative was to send me to Francis House, a Catholic institution.
I was clear that I had specific legal instructions to my Powers of Attorney that I seek secular care and described some of the mis-treatment I have experienced over the years in religious health institutions.
Dr. Setla persisted in demanding that I consider Francis House as something I might “have” to do. I restated my own determination to stay out of institutional care, and stated that my health proxies and the people holding my powers of attorney (including Minnie Bruce) were well aware of my wishes and concurred with those wishes.
Dr. Setla grew more insistently adamant, saying, “If you truly were a scientific woman, you have to at least meet with the nuns.” I continued to politely, but equally adamantly, decline this as an option.
3) Failure to Provide Comfort and Pain Relief
The “Patient Information on Pain and Pain Relief” sheet included in the introductory packet to Hospice of CNY has statements such as
“1. You deserve to have your pain believed….” and
“2. Pain management should be a priority….” and
“3. You deserve to be treated with respect….” and
“6. You deserve to have your pain medication explained to you…” and
“7. If you have serve pain, you deserve prompt and immediate attention…”
None of these promises were fulfilled during the 6+ weeks I was in Hospice.
I had told Dr. Potash and Dr. Setla in the initial interview of my non-response to morphine-based drugs, as all my doctors and dentists are aware. I was told this would not be a problem. I was told that appropriate response would be made when I needed pain relief.
But the first time my spouse called to report an unbearable increase in my pain, the nurse handed me a cell phone. It was Dr. Setla who stated: “I’ll never give you my medicines!” She added with seeming mockery, “Why are you so afraid to get better, Leslie?”
Dr. Setla also announced—a week after admission into hospice—that she wanted to draw my blood in order to do unspecified “diagnostic work.”
I told Dr. Setla that such work should have been proposed before hospice admission. If I were going back to diagnostic work, it wouldn’t be with a doctor who demonstrated a shocking lack of knowledge of infectious diseases.
I made the decision not to ask for any more pain relief in an attempt to protect my credibility and my integrity as someone suffering from late-stage tick-borne diseases.
But that is no justification for failure to provide pain relief. I never refused help with pain. I refused to ask again.
I continued to report my pain, my spouse was interviewed for hours each week about my pain. Our neighbors and building management were all alarmed by the weeks of roaring pain from our apartment.
My spouse was told that they would give me pain medication after I was unconscious so that my spouse “wouldn’t suffer.” Why would I need pain relief then? My spouse was already suffering and was traumatized from hearing her loved one screaming in pain.
Since I had been admitted to hospice, I could not turn to any other doctors outside of hospice, no matter how the medical horrors mounted for me and for Minnie Bruce.
I was the one who ordered hospice out of our home and our lives, after more than six weeks of pain, suffering and discriminations.
I packed up all their drugs, including the emergency “Comfort Care” box from the refrigerator.
Dr. Horst told me I could keep the drugs. I told them I didn’t want their drugs.
Hospice of CNY management is caught in a contradiction of their own creation: If they thought I was not dying, they were bound by law to release me immediately. But once admitted, they are bound by their own hospice guidelines and laws.
I had been admitted on June 13, 2013. I was the one who fired hospice, on July 29, 2013.
I am not merely reporting that Hospice of CNY did not meet our needs. I am protesting the fact that Drs. Setla and Horst made our lives much, much worse—they did, and only did, great and irreparable harm.