DYING, ILLNESS, AND AGING WITH GRACE

• Desperate Families Search for Affordable Home Care (Reed Abelson, The New York Times and KFF Health News, The High Cost of Dying DYING BROKE series, 12-4-23) Facing a severe shortage of aides and high costs, people trying to keep aging loved ones at home often cobble together a patchwork of family and friends to help.
• Dying Can Cost Loved Ones $20,000 Before Lost Wages And Worse Health, New Report Says (Deb Gordon, Forbes, 1-16-23)

"On average, survey respondents reported that they paid $3,584 to the funeral home (lower than the 2021 national median cost of $7,848 reported by the National Funeral Directors Association). Burial plots cost respondents an average of $1,841. Smaller expenses, such as catering, officiants, flowers, music, and invitations can add more than $1,700 combined, making the funeral the single biggest expense associated with a loved one's death.

    "But the costs don't end with the funeral. Survey respondents reported paying an average of $4,384 to deal with financial matters, such as hiring accountants and paying bills.

Respondents spent nearly $5,000 on legal matters, including lawyer fees and costs associated with selling off assets. Disposing of real estate can add another $4,000."

• “The High Cost of Dying”: What Do the Data Show? Anne A Scitovsky, Milbank Quarterly, 12-2005) It is not surprising that “the high cost of dying” has led some people to question whether resources are being “wasted” on the dying (especially if the latter are very elderly) and could (or should) be more productively allocated to other patients, or even to other socially desirable ends such as education or housing. High medical care costs at the end of life become “the high cost of dying” and the source of concern over “wasting” scarce resources on the care of hopelessly ill patients. The policy implications of this interpretation of the data, though rarely stated explicitly, are clear: If we want to stem the rise in medical care costs, medical care expenditures at the end of life provide an excellent target for cost-containment efforts. A consensus has gradually developed about the ethics of forgoing treatment for such patients for whom care is, in some real way, futile. But no such consensus exists for patients who, although very sick, might still be helped by various diagnostic or therapeutic procedures and whose days might be prolonged. Thus, if we ask whether the costs of care for this group are excessive, we face new ethical problems of major proportions.

• The Cost of Dying (Empathy, 2024) Get the report here
• The Cost of Dying: Average Cost of Funerals and Cremation Fees (Self) This detailed piece is about the true cost of dying across the U.S. based on official data. Funerals and cremations are expensive--often surprisingly so. How much do people have to spend to say goodbye to their loved ones (by state). Which states cost the most to die in? Which cost the least? What are the most expensive states for funerals,for cremation? What were costs of burials and cremations in 2020 vs. 2022. What is the average cost of a funeral service? The average cost of dying in the U.S. in 2022 was $7,028 based on a blended average cost of burials and cremation services, calculated by the percentage of these end-of-life services performed across the country. Across all states, funerals cost an average of $8,526, while cremations cost $7,573. Hawaii is the most expensive state for funerals ($13,439) and cremations ($11,212). Mississippi is the most affordable state for funerals ($6,144) but Wyoming has the lowest cost for cremations ($5,219). 

     "Average service fees alone are a staggering $2,195 to start, however, the casket fee is what drives the price of funerals much higher than cremations. The average price of a casket according to the NFDA is $2,500, compared with $295 for an urn for those who choose to be cremated." 

• What to Know About Home Care Services (Reed Abelson, NY Times, 12-4-23) Finding an aide to help an older person stay at home safely takes work. Here’s a guide.
• The Hidden Costs of Dying in America (Kendra Madsen, Tincture, 7-2-19) The National Funeral Director’s Association estimates median funeral costs, such as viewing services and cremation, hover at $7,360. While cremation is generally less expensive than burial, the Consumer Price Index indicates that over the last thirty years, all funeral expenses have risen more than 200%. Being armed with information about costs can help you and your loved ones make the best, most-compassionate decisions for your family. It can also ultimately save you money. In this case, knowledge isn’t only power — it’s also the peace of mind that comes with knowing you won’t leave financial burdens behind.
• The Economics of Dying -- The Illusion of Cost Savings at the End of Life (Ezekiel J. Emanuel, and Linda L. Emanuel, New England Journal of Medicine, 2-24-94) The unlikeliness of substantial savings in health care costs does not mean, however, that there are no good reasons to use advance directives, fund hospice care, and employ less aggressive life-sustaining treatments for dying patients....Our alternatives for achieving substantial savings seem limited to major changes in the financing and delivery of health care, difficult choices in the allocation of services, or both. Whatever we choose, we must stop deluding ourselves that advance directives and less aggressive care at the end of life will solve the financial problems of our health care system.
• Advance Directives: What You Need To Know (Jennifer Lagemann, Forbes, 10-25-22) Only one in three U.S. adults has an official plan in place for end-of-life care. Formalizing these details when you’re able to do so can make a world of difference for you and your loved ones down the line. Research shows advance directives can “get prematurely misinterpreted as a DNR order, and DNR orders can get misinterpreted as do-not-treat orders.” The goal is for the health care team to make decisions that honor what a person says they want. Each type of advance directive serves a unique purpose and is implemented in certain situations.
    POLSTs (aka MOLSTS) are implemented once both the patient and their health care provider agree and sign off on a medical treatment plan as it relates to the person’s current health status.
    Living wills go into effect when the person enters any of the conditions listed in their living will document. At this point, the document becomes operative and is followed by all care team members, explains Dr. Mirarchi.
    Meanwhile, a health care power of attorney can be utilized at any point in a person’s life when they aren’t able to make a health decision for themselves, be it due to an acute health emergency or progression of a chronic illness.
    And DNR orders become active when a person stops breathing or their heart stops beating, at which time the care team isn’t allowed to perform CPR to resuscitate them. See website section on Advance directives and living wills for more information on those options.

 

• Death and Covid
• Statistics about death, mortality, long-term care, hospice care, and palliative care
• Having a "good" death
• Practical aspects of end of life care

In three sections:

Being trans in America (Washington Post/KFF survey and series)

Whistleblower in a small gender clinic

More information, articles

 

TRANS IN AMERICA    

The excellent Washington Post/KFF survey and series (2023)

Contributors: Casey Parks, Emily Guskin, Scott Clement, Annys Shin, Fenit Nirappil, Hannah Natanson, Tara Bahrampour, Laura Meckler, Anne Branigin.

 

• Understanding Trans Identity in the U.S.

  Gender identity differs from sexual orientation.

    Many trans adults don't identify as a man or a woman.

     Most trans adults say transitioning helped them.

  Nearly 8 in 10 trans adults  (78%) say that living as a gender different from the one assigned to them at birth has made them "more satisfied" with their life, including 45% who say they are "a lot more satisfied."
• Most trans adults say transitioning made them more satisfied with their lives 

The Washington Post and KFF surveyed one of the largest randomized samples of U.S. transgender adults to date about their childhoods, feelings and lives 
• Voices of trans people in America: ‘I’ve always known I was different’

     Four trans people share their stories. With photos.

• How historians are documenting the lives of transgender people (Erin Blakemore, National Geographic, 6-24-22) "The term “transgender” wasn’t coined until the 1960s—but people have always challenged the gender binary. Here’s a look at their history, from ancient civilizations to the modern rights movement. "In 1999, trans activist Monica Helms designed a symbol that would come to define a movement: the transgender pride flag. Using blue and pink stripes—colors with deep connections to gender assignment—the flag also featured a white stripe to represent people who are intersex, transitioning, or nonbinary."
•  6 key takeaways from the Post-KFF survey of transgender Americans

      Among them,

        1. Whether a trans person is out to family and friends depends on their age.

        4. Many transgender people knew they were trans from a young age.

        6. Most transgender adults say living as a gender different from the one assigned to them at birth improved their lives.

• For trans people, medical visits can be more traumatizing than healing

        Trans patients share stories of subtle discrimination, outright hostility and ill-informed medical professionals

• School is a ‘nightmare’ for trans and nonbinary kids. Here’s why.

      In a sweeping Washington Post-KFF poll, 45% of trans adults said school made them feel unsafe
• Trans people have never been so visible — or so vulnerable
• Six works that capture the complexity of being trans in America:

     'Both Sides Now' by Peyton Thomas; 'One From the Vaults'; 'Veneno'; 'Femme Queen Chronicles';'Big Dad Energy: A Trans-Masculine Comedy Showcase'; and 'Framing Agnes'
• Most Americans support anti-trans policies favored by GOP

    Most adults say gender is based on sex assigned at birth. Most Americans say trans women and girls should not be allowed to compete in sports with other women and girls. Etc.
• Trans lawmaker Brianna Titone tried not to stand out. Then a gunman killed 5 at Club Q

     This session, she wanted to do more than outvote the Republicans. She wanted to win them over, too.
• Trans kids crave acceptance at school in a nation that often resists it

     They had sensed already that something was different about their own gender identity but didn't know what. "I didn't have the words for 'transgender' or 'nonbinary' or any of this."
• In middle age, they realized they were trans: ‘A lightbulb went off’

     Roughly one-fifth of trans adults 45 and older have not told anyone they are trans, a Washington Post-KFF poll conducted late last year found
• 1 in 4 Transgender Adults Say They’ve Been Physically Attacked, New KFF/Washington Post Partnership Survey Finds

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Whistleblower in a small gender clinic

• How a Small Gender Clinic Landed in a Political Storm (Azeen Ghorayshi, NY Times, 8-23-23) Washington University’s youth gender clinic in St. Louis, like others around the world, was overwhelmed by new patients and struggled to provide them with mental health care. "But as the number of these patients soared, the clinic became overwhelmed — and soon found itself at the center of a political storm. In February, Jamie Reed, a former case manager, went public with explosive allegations, claiming in a whistle-blower complaint that doctors at the clinic had hastily prescribed hormones with lasting effects to adolescents with pressing psychiatric problems."
      "The reality was more complex than what was portrayed by either side of the political battle, according to interviews with dozens of patients, parents, former employees and local health providers, as well as more than 300 pages of documents shared by Ms. Reed.

     "Some of Ms. Reed’s claims could not be confirmed, and at least one included factual inaccuracies. But others were corroborated, offering a rare glimpse into one of the 100 or so clinics in the United States that have been at the center of an intensifying fight over transgender rights.

     "The turmoil in St. Louis underscores one of the most challenging questions in gender care for young people today: How much psychological screening should adolescents receive before they begin gender treatments?"  This story about the controversy came out after The Free Press first broke the news.

• I Thought I Was Saving Trans Kids. Now I’m Blowing the Whistle (Jamie Reed, The Free Press/TFP, 2-9-23)

[In 2018 Reed was a case manager at The Washington University Transgender Center at St. Louis Children's Hospital, which had been established a year earlier.]

      "There are more than 100 pediatric gender clinics across the U.S. I worked at one. What’s happening to children is morally and medically appalling. By the time I departed, I was certain that the way the American medical system is treating these patients is the opposite of the promise we make to “do no harm.”
      "At first, the patient population was tipped toward what used to be the 'traditional' instance of a child with gender dysphoria: a boy, often quite young, who wanted to present as—who wanted to be—a girl. Until 2015 or so, a very small number of these boys comprised the population of pediatric gender dysphoria cases. Then, across the Western world, there began to be a dramatic increase in a new population: Teenage girls, many with no previous history of gender distress, suddenly declared they were transgender and demanded immediate treatment with testosterone.
      "As the center’s website said, 'Left untreated, gender dysphoria has any number of consequences, from self-harm to suicide. But when you take away the gender dysphoria by allowing a child to be who he or she is, we’re noticing that goes away. The studies we have show these kids often wind up functioning psychosocially as well as or better than their peers.'   "There are no reliable studies showing this. Indeed, the experiences of many of the center’s patients prove how false these assertions are."
      "So many critics and media outlets tried to paint not just me but the entire issue of transgender youth as a showdown between the right and left. As a lifelong member of the left, a queer woman married to a transman, I’d clearly been brainwashed or paid off—or probably even both—by conservatives."

     Many of the following articles are linked to in this article.

• Jamie Reed's letter to the Missouri Attorney General (1-26-23) 

• Missouri AG officially probing ‘disturbing’ whistleblower claim that transgender clinic ‘harming hundreds’ of kids (Lee Brown, NY Post, 2-10-23)

• Missouri Anti-trans "Whistleblower" Story Is a Manufactured Controversy - Point By Point (Erin Reed, Erin in the Morning, 2-10-23)

    Disputes Reed's points, one by one, concluding, "In fact, the findings around gender affirming care are so stunningly in favor of proceeding with that care that 29 major medical organizations representing hundreds of thousands of physicians have signed off to that care" (and lists them).

• The Courage to Admit You’re Wrong (Jamie Reed, The Free Press, 12-31-23) Jamie Reed became a lightning rod in TFP after she blew the whistle about the mistreatment of minors at The Washington University Transgender Center at St. Louis Children’s Hospital, where she’d worked as a case manager for four years. Her revelations sparked an investigation of the clinic by the Missouri Attorney General, and this helped lead lawmakers in Missouri and other states to pass bans on gender transition of minors.

    "When I blew the whistle on a transgender clinic, some suggested I had been 'brainwashed by the right.'   "As a lifelong member of the left, a queer woman married to a transman, I'd clearly been brainwashed or paid off—or probably even both—by conservatives. I had a 'clear ideological bias.' No. I'm a progressive who follows science.

• The Bigger Picture Continues – Denver, Colorado (Genspect, 7-11-23) Jamie Reed spoke at the first U.S. conference for Genspect, an organization that discourages gender transitioning of minors. See YouTube videos from that conference here

       

 

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More information, articles
• What do I need to know about transitioning? (AARP fact sheet)
• The Experiences, Challenges and Hopes of Transgender and Nonbinary U.S. Adults (Anna Brown, Juliana Menasce Horowitz, Kim Parker and Rachel Minkinn, Pew Research Center, 6-7-22) Findings from Pew Research Center focus groups.
• Bathroom Bills Are Back — Broader and Stricter — In Several States (Jazmin Orozco Rodriguez, KFF Health News, 2-29-24) State lawmakers — predominantly in conservative, rural states — are resurrecting and expanding efforts to prohibit transgender people from using public restrooms and other spaces that match their gender. Some have sought to ban trans people from “sex-designated spaces,” including domestic violence shelters and crisis centers, which experts say could violate anti-discrimination laws and jeopardize federal funding.
• This is me, as I am’: A photographer documents her own gender transition (Allison Lippy, National Geographic, 6-24-22) In 2015, Allison Lippy realized who she had always been—and turned her camera on herself to understand her journey as a transgender woman. Excellent photographs.
• How historians are documenting the lives of transgender people(Erin Blakemore, National Geographic, 6-24-22)The term “transgender” wasn’t coined until the 1960s—but people have always challenged the gender binary. Here’s a look at their history, from ancient civilizations to the modern rights movement.
• Transgender rights in the United States (Wikipedia entry, full of information and links) Marriage, parental rights, reproductive rights, identity documents (name change, birth certificates, cases, driver's licenses, passports, persons not born in the United States, third gender option, US jurisdictions with "gender X" driver's licences, death certificates), housing, genocide, government list of trans people, physical violence, sexual violence, displacement and sanctuary states, discrimination protections (employment, laws--federal, state and local, chart), cases, education (Main article: Gender identity under Title IX) (local school boards), employment, public factors (social media, politicians, media involvement, grooming conspiracy theory); restroom access (indecent exposure charges for restroom use, schools, workplace); Hate crimes legislation; Healthcare (treatment for adults, treatment for children, bans of gender-affirming healthcare for people under 18--chart, by states ), awareness of providers, discrimination, Catholic hospitals, "trans broken arm syndrome" (common form of discrimination), medical privacy, insurance; Prisoners' rights, V-coding; immigration; military; taxes; sports; Biden administration rule change; references.
• What Is Gender Transitioning? (S. Nicole Lane, VeryWellHealth, 7-2-23) Gender transitioning, known more commonly today as gender affirmation, not only involves aesthetic appearances but may also involve changes in social roles, legal recognitions, or physical aspects of the body. Gender transitioning is often described as a binary (male or female) but can also be non-binary, meaning a person is neither strictly male nor female.
• Transition Roadmap (UCSF Transgender Care)
• Breaking the Silence: The Reality of De-Transitioning (YouTube video, NBCNews Spotlight, 9-11-23)
• 'I regret trusting' the doctors who pushed me to transition gender (YouTube video, Times Radio, 6-4-23)
• Interim Report (The Cass Review, UK, Feb 2022) Children and young people with gender incongruence or dysphoria must receive the same standards of clinical care, assessment and treatment as every other child or young person accessing health services. 
       "The care of this group of children and young people is everyone’s business. Our initial work indicates that clinicians at all levels feel they have the transferable skills and commitment to support these children and young people, but there needs to be agreement and guidance about the appropriate clinical assessment process that should take place at primary, secondary and tertiary level, underpinned by better data and evidence.  At this stage the Review is not able to provide advice on the use of hormone treatments due to gaps in the evidence base. Recommendations will be developed as our research programme progresses."

• Youth Access to Gender Affirming Care: The Federal and State Policy Landscape (Lindsey Dawson, Jennifer Kates, and MaryBeth Musumeci, KFF, 3-24-23)

     "Numerous states have implemented or considered actions aimed at limiting LGBTQ+ youth access to gender affirming health care. Four states (Alabama, Arkansas, Texas, and Arizona) have recently enacted such restrictions (though the AL, AR, and TX laws all have been temporarily blocked by court rulings) and in 2022, 15 states are considering 25 similar pieces of legislation. At the same time, other states have adopted broad nondiscrimination health protections based on gender identity and sexual orientation. Separately, the Biden administration, which has been working to eliminate barriers and expand access to health care for LGBTQ+ people more generally, has come out against restrictive state policies. This analysis explores the current state and federal policy landscape regarding gender affirming services for youth and the implications of restrictive state laws."

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