Hospice care for the transgendered patient

Hospice is beset by many societal obstacles in its care of the transgendered patient.  I saw a most recent example of this in our local community hospice.  An elderly female (MTF) transgendered patient had developed metastatic cancer.  Chemotherapy had failed and had left her profoundly weak and infirmed.  Estranged from her family, she had only a few friends to rely on but then only intermittently so.

Hospice admitted her and, with supportive care, her overall status did improve.  However, now she was in a dilemma.  She was well enough to leave the unit but not well enough to go home.  Too poor to afford a single room, the patient was unable to be placed.  Chronic care facilities viewed her as if she were both male and female.  This  prohibited her placement with a roommate.  As she was physically  female she wished to have a female roommate; the facilities saw her as originally “male” and either could not or would not comply.  In the end, she remained at the hospice center for the remainder of her life.  While the hospice provided her with exemplary care, the obstacle of society’s views on gender prevented her from ever leaving the unit.

The transgendered population confronts a myriad of difficulties which hospice must also address.  Socially, transgendered folk, gentle folk, find themselves relegated to a near-netherworld existence.  Forced to society’s fringes they feel isolated, even abandoned, by family and friends.  They may find their friendships restricted to a “gay-friendly” environment or to other “T-girls.”

Many T-girls succumb to a personal economic collapse with a loss of job, loss of insurance, and even a homeless existence.  Their health can deteriorate with severe depression being a foremost finding.  Impoverished and despondent, they may turn to alcohol or drug abuse.  They may engage in risky behavior for hepatitis and AIDS.  Many transgendered people would shun medical care until their health status has deteriorated to the extreme.  In an era when patients can be nudists, “fuzzies,” or carry tattoos of violent causes (eg. Nazis), why must the transgendered have fear of disfavor from a medical staff corrupted by society?

Their only supposed crime is gender.  In the Virginia Transgender Health Initiative Study almost half of the transgendered patients felt that their doctor had little or no knowledge of transgendered health issues.  Roughly half of patients surveyed felt uncomfortable discussing their transgendered issues with health care providers for reasons like fear of ridicule, hostility, insensitivity amongst personnel, and refusal of treatment.  About a fourth of those surveyed had experienced discrimination by medical providers.  As these patients avoid medical care their acutely treatable conditions may progress to chronic, or more terminal illnesses or be complicated by other maladies.

The transgendered population is often helpless to find support for their health care.  Transgendered people are a ‘minority of minorities’, “society’s most vulnerable population” as per the Reverend Stan Sloan of Chicago House, creator of the TransLife Center.  The center offers a haven to a people who sometimes find themselves unwelcomed at homeless shelters, are  ignored by charitable institutions, and report feeling forgotten by the gay community.  While gay and lesbian awareness progresses, transgendered support appears stagnant.  Hospices need more resources to draw on for the special problems of transgendered patients, perhaps something more than just sources adjunct to the gay and lesbian community.

Robert Killeen is a physician who blogs at GeriPal

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  • Patricia

    It IS sad that a person who needs hospice has to deal with placement issues at the end of her life. But I think you conflate the issues “t-girls” (I don’t understand that term; an elder woman is not a ‘girl’ and girls are not ‘t’ they are still in the stage of identity formation) with end of life hospice care.

    There is a lot of controversy about Transgender Identity. When you describe the poor health and mental concerns of people who identify as ‘trans’ how is it you know which came first? Did the mental issues maybe situate a person to undergo terrible surgeries and hormonal treatment that then worsened their conditions? Especially for M2F transitions, these people don’t really pass for female and that might lead to mental health issues.

    It is not necessarily a societal issue, but a personal one. I think too, it’s a medical one since the medical community has begun to treat “trans identity” as though it was a valid condition and one they can treat. With costly imperfect surgeries, psychiatric care, and drugs. Certainly a financial boon. And then you decry the destitution these people face.

    Also to describe “t-girls” as “gentle folk” is pretty absurd. You should read through some of the blogs and exchanges in this community of people and you will find a LOT of non-gentle folk.

    I think you missed the mark here.

  • DiNovia

    While I applaud your intent, the wording you use is, indeed, off. Transgender people can be both Male to Female transition or Female to Male transition. The label “T-girls” is as inaccurate as it is offensive.

    I work in residency education and we are slowly increasing awareness and educational opportunities in LGBT health issues. This will continue as more and more LGBT people reach out for the health care that they need and stand up for the health care understanding and education that they deserve.

    Education in the needs of LGBT patients should also be included in nursing schools and in CNA training programs to address the long-term health requirements of LGBT people most completely. This will necessitate faculty members who can and will teach these complex courses.

    • Patricia

      I think you should consider the cult of ‘transgender’ when you think about LGBT issues. Not all L&G&B consider that “T” should be part of the overall mix. I am not against “T”; not in the least. But I truly wonder the prevalence of this condition vs the fetishism of youth culture and the mass acceptance of the medical community! My fear is that these things will be taught as if they are true and real because people who are suffering in some way come to them and say it is true. If you consider that it is not ‘true’ then you have to look at what could be causing this and not embracing a dangerous cultural twist.

      • Larry Newman

        Patrica, it appears as if you have a personal agenda here. Surely you are not part of the medical community who treats the trans* population? You have clearly read blogs by transgender people and formed an opinion that they are not “gentle”. You also commented on their suffering. Trans* people are suffering not because of what is happening internally but because of how our culture treats them when they don’t fit into our inaccurate binary system of gender. In that same study that the author mentions, it also presents the statistic that 2% of trans* people indicated they experienced physical violence by health care workers when seeking health care. Physical violence in their providers office. Think about that. That is what they face, so I don’t think “being gentle” keeps them alive. Trans* people are murdered because of their gender differences – and if you think their differences are due to choice, then think back to when you chose your gender. You didn’t, it was assigned to you at birth by someone else. It is not a “cultural twist” for the vast majority. You are ignorant when you write “Especially for M2F transitions, these people don’t really pass for female”. First, that is not always the goal and why should they need to pass? Patricia I say let go of your binary bias and see the rainbow of people who have non-conforming gender. They’re beautiful, if not always gentle.

        • Patricia

          Oh my god…how can you call me biased when you clearly are? You use all the code words included in the new trans (*) narrative.
          Violence in a physicians office? I find that really hard to believe and please point out the study so I can check it out.
          Let me be really clear. I AM biased. And it is not because I reject transgenderism. It is because I fear the affects that this possible fetish and cult has upon young people these days. Because of the internet there are young children considering transitioning! That is ridiculous. A child cannot make that decision because a child cannot distinguish what is affecting him/her.

          Gentle folk? I don’t think so. Some people are by nature gentle but you cannot paint a group of people who might “say” they are trans (*) as gentle. How absurd. SOME of those people are very violent in their words.

          Now why would that be? Violent and abusive upbringing? Personality disorders? Mental health issues? To automatically give credence to the idea of transgender without proper reference to studies is offensive. It’s also ignorant. In the times of the Salem Witch Trials girls testified to the truth of their symptoms of being affected by witchcraft. I see the whole transgender phenom in youth today.

        • Patricia

          Also please consider the hurt these terms and brainwashing have upon the youth in our culture. If someone is gay or lesbian and the family would rather have a trans kid don’t you think this will affect how so many kids think about themselves? Do you realize (you probably do but don’t care) how many children talk about transitioning with hormones and surgery? Do they truly KNOW what all that will involve (both in financial and emotional costs)? I doubt it.
          Don’t accuse me of not ‘loving the rainbow’ because I love the rainbow of human experience and expression. However to encourage young people to change their bodies is not that. THAT is trying to force them INTO a gender binary. It is not allowing them freedom within their own bodies to be who they are.

          • Larry Newman

            I can only speak to the adult experience. I am mostly ignorant of trans* children. I do believe there are children who know from a very young age that they are gender non-conforming – though they would never verbalize it that manner. I also know that studies show that there are a greater number of adolescents who decide they are NOT transgender after they have claimed they are, so I share your concern of moving forward with hormone therapy with children too quickly. Also, I didn’t accuse you of not loving the rainbow, I mean who doesn’t love a rainbow?? I was just encouraging you to see a spectrum of gender as being okay.

          • Patricia

            I think it’s important to understand how adult beliefs and concepts are infiltrating youth culture. It’s very dangerous and since many MDs, psychiatrists, shrinks etc are supporting teens and younger to transition it is up to the adults to put a halt to it. We can accept the spectrum of adult sexuality and identity of course, but it’s selfish to ignore what is happening to young people. Imagine doctors and shrinks encouraging a young person to transition before he/she is even 18. Transgenderism cannot be as prevalent as it appears to be if you check out the internet/youtube/tumblr etc.

  • buzzkillerjsmith

    A short history of hatred in America, a country that always needs someone of something to hate:

    Blacks were hate objects for hundreds of years. They still are to some extend although hating them is no longer generally acceptable.

    In the early to mid-19th century the Irish had their turn.
    We Catholics have performed out role has as hate objects but that kind of faded away, although the Italians 100 years ago took their turn.

    Of course the Jews are right up there with the blacks, especially among the Europeans, but things are now better, at least in America.

    The Germans, the Japanese, the Russians, the Chinese have been there, and Mexicans of course have had a long history of this up to the present day.

    The gays were almost perfect as hate objects. Hell, even those who were hated themselves could hate the gays. But now that’s fading away, although they are still of use as hate objects to many.

    Fortunately for America, it can hate the transgendered for a while, but their existence has to become better know. Them and the Muslims of course. We’ll see how long the transgendered take their turn. I think the Muslims will be hated for a longer time.

  • Patricia

    I understand what those statistics (I have actually read them somewhere else) are saying but my question is: why are so many people identifying this way and why are so many of them children? Listen I do not think that people should be “this” or “that”. At all. But those who do not agree this is a phenomenon to this level of prevalence are not bigots and are not ignorant.

    Let me ask you this…do you look at the tumblr website or youtube and examine the incredible numbers of children deciding they are trans and plan on transitioning as soon as they are 18? Cutting off their genitals? Taking hormones? How could transgenderism possibly in this high of a prevalence?

    Could it be that some of the feminist blogs that decry this F2M transitioning is a form of misogyny are correct? What transitioning does is more firmly take away the ‘rainbow’ and plant people and in this case young kids into what is called the ‘gender straight jacket’. These kids go for hyper-female or hyper-male identities. This doesn’t make sense at all.

    Looking at the surgery involved for F2M~ it’s pretty gruesome leaving permanent scares and possibly non-function genitalia. Wouldn’t we be better serving our kids by helping them to accept who they are, and letting them express themselves without surgery and hormones? Give them real time to sort it out? Doctors should not promote this sort of thing at the level which it seems they do.

    My problem with what you are saying is that it does not dig deeper into the issue; you are treating it as if it is just a matter of acceptance and that I must not know anything about it or I must be bigoted. Why such a surge of children claiming this identity? The lack of scientific study is disturbing.

    • LIS92

      Just because there are lots of videos on youtube doesn’t mean anything statistically. With 300+ million people living on in the US, you would see a lot of videos. With an estimate of 0.25% of the population being transgender, there are 750,000 transgender people in the US. If 1% of of them make a video, there are 7,500 videos.

      Are you basing your opinion of whether a kid is really transgender on the prevalence of youtube videos?

      You post has the undertones of people being recruited to be transgender and what a horrible thing that is. I am surprised you didn’t use the term “transgender lifestyle.” Unless you have scientific studies that say that doctors are promoting gender reassignment surgery, I can assume you just have a problem with those who are transgender.

      • Patricia

        Your assumption that I have a problem with those who are transgender is typical of assumption-making. Completely wrong. So what studies show that there are 0.25% of the population being transgender? From what I have found those studies are quite flawed and based on those who have gone through with transition surgery. That does not actually indicate whether a person was transgender or not.

        What I do have a problem with is doctors and shrinks treating this as if it is something that is *normal*. This does not mean I think it’s NOT normal. It only means that there is a big problem here if medical industry springs up and begins to treat people who may not in fact need that sort of treatment.

        I do not think there is enough if any evidence based information out there. And my worry is for children. You can paint me as ignorant and bigoted all you want; that doesn’t affect me. What does affect me is the thought of children contemplating and being encouraged (by parents, the medical field etc) to do something that is quite reversible and could lead to mental issues later on in life.

        Why do we think we need to treat transgender people with surgery and hormones? Why can’t we accept them as they are? And allow them the kind of personal expression everyone should enjoy.

        • LIS92

          The National Center for Transgender Equality estimates between 1/4 and 1 percent of the population is transgender. I used the low end to show you that a few people could produce a large number of videos. The number of youtube videos you have seen doesn’t have any relevance to the prevalence of transgender youth and children.

          Have you disregarded scientific studies because of youtube?

          Where is your proof that parents and doctors are encouraging surgery and hormones for children. This idea is ridiculous that any parent or doctor would nilly willy make such a determination for a child because it’s popular.

          Since you still haven’t made any arguments on what studies are out there and why they a flawed, I still think you have a problem with those who are transgender.

          • Patricia

            First if you think I care about what you think (as to whether I have a problem with transgender or not) you are mistaken. I care about kids who are being sucked into this cultism and fetishism.

            The study that estimates the number of transgender condition in society is based on the number of people who have had transition surgery. Does that sound like a rigorous scientific study? Not to me. Tell me how you could actually conduct this study anyway.

            Please don’t think I am naive to think that youtube videos indicate prevalence. However, it does indicate what is a trend. And if you have read other studies that show that some behaviors are contagious (e.g. suicide, obesity/overweight) then you too would be concerned by the amount of youtube videos concerning this issue. Not to mention how tightly associated these are with cutting and anorexia and bulimia.

            The concerns I have are not just some lone bigoted voice (which you seem to think I am) but come from many factions, including lesbian and gay people, as well as feminists.

            And do I think doctors would participate in this? Seriously? Seriously. I can tell you many activities doctors participate in that can be considered questionable. All for the big dollars. So yeah. Don’t be blind.
            Critical thinking would dictate that you consider what I am saying might actually be true. And that I have valid reasons for thinking this way.

          • LIS92

            You claim there is a large body of people who are transgender and have not had reassigment surgery that are at risk of being coerced by greedy doctors because they saw video on youtube.

            Then you compare being transgender to committing suicide…that perhaps in a moment of despair after seeing that youtube video, some kid is going to run out and get gender reassignment surgery.

          • Patricia

            Oh god, get a grip! I think you need to familiarize yourself with the whole youth culture. Many of these youth who glamorize the transgender idea, also glamorize cutting and anorexia! Please. They also glamorize getting their genitals removed and using *T*. Without one ounce of understanding of how doing so will impact their future lives.

            I am not comparing transgender to suicide. You are throwing up illogical arguments or are deliberately trying to be misleading. What I CLEARLY said is that suicide among youth has shown to occur in clusters. Is this also possible with transgender identifying? Or anorexia? Or cutting?

            The VERY large body of people who are at risk here are our children. The motivations of doctors are harder to discern and I don’t care to get into that as it’s too intricate. However, you cannot at all deny that certain “conditions” can become medicalized and determined to be something to “treat”. I believe this is true with the vast majority of young people who are beginning to think they are transgender. And how irresponsible of the medical community not to examine this with a critical eye (and irresponsible of you specifically). Someone who is 18 is way too young t make this type of surgical decision; the brain is clearly not developed at this age.

            I am done discussing this with you since you are purposefully misdirecting my comments towards illogical meanings.