Hospice and Palliative Care

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STUDENT VOICES | CHYNN PRIZE THIRD-PLACE WINNER

By Maia Lauria

I first stumbled upon the issue of palliative care during a particularly hard time in my life. I was twenty years old, and for the first time having to confront the realities of watching a loved one die. Up until then, death had been a decently abstract concept to me. My grandmother had passed away when I was a child, but I was too young to be exposed to any part of the process. My uncle had also passed away when I was a teenager, but due to the suddenness of the death and geographical distance, I did not play a role in the event. I had never attended a funeral, let alone seen a corpse. The case of Monica was very different. For the first time, I became intimately involved in the dying process; and through this, became aware of the workings of the hospice and palliative care system that has become incredibly common throughout the country.

Monica was my mother’s best friend, and a pseudo-mother to my sister and I. In 2007, doctors found a malignant tumor in her colon, leading to multiple surgeries and the administration of rounds of chemotherapy. After some years of remission, the cancer returned in 2011, spreading to more of her internal organs. Once again, different treatments were administered, with waves of optimism and pessimism. Ultimately, in the summer of 2015, after attempting a failed experimental treatment, she was told that there was no more the doctors could do, and that she probably only had a couple more weeks to live. Receiving this news, she opted for in-home hospice care, to be able to spend her last days comfortably with family and friends.

Hospice care is becoming an increasingly common end of life plan in the United States. In the past decade, the number of hospice patients has more than doubled. In 2009, 42 percent of all deaths were under the care of a hospice program.1 According to the National Hospice and Palliative Care Organization, hospice care “ involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support” to help allow the patient to succumb to death in best way possible.2 The phrase they use is that they are shifting the focus from curing to caring. Typically, this involves a family member serving as the primary caregiver, with members of the hospice staff making regular visits and providing 24 hour on-call assistance.2 Central to hospice care is the idea of palliative care, which makes sure the patient is able to die in the most pain-free and dignified manner.

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Fordham University’s Dr. Celia Fisher Discusses Transgender Healthcare on WFUV

 

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Transgender and gender non-conforming communities face a number of various healthcare challenges, both social and medical, including “stigma, discrimination and lack of access to quality healthcare.”

Fordham Conversations Host Robin Shannon talks with Dr. Celia Fisher, Marie Ward Doty University Chair in Ethics, Professor of Psychology, and founding Director of the Fordham University Center for Ethics Education, about these disparities on WFUV.

Please visit WFUV to listen to the full interview, “The Troubles with Transgender Healthcare.”


For LGBT resources, please visit RELAY (Research and Education for LGBT and Allied Youth). RELAY is a project of Fordham University’s Center for Ethics Education which looks to advance the conversation about health for lesbian, gay, bisexual, and especially trans youth. Please also visit the resource page for creating an LGBTQ-inclusive classroom.

Celia B. Fisher, Ph.D. is the Fordham University Marie Ward Doty University Chair in Ethics and Director of the Center for Ethics Education and the HIV and Drug Abuse Prevention Research Ethics Training InstituteFisher’s  Decoding the Ethics Code: A Practical Guide for Psychologist, is now in its fourth edition from Sage Publications.

Ethics & Society Newsfeed: February 3, 2017

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Politics

Betsy DeVos’s ethics review raises further questions for Democrats and watchdogs
Betsy DeVos, Trump’s nominee to lead the Education Department, promised to divest from more than 100 entities to avoid potential conflicts of interest with her new job. Questions left unanswered.

Donald Trump warned over ‘unprecedented’ plan to appoint cabinet without ethics office checks, emails reveal
Disclosed emails from the head of the ethics office warn President aides staffing a cabinet with robust oversight is a ‘tradition evolved as a result of hard lessons’

South Dakota Governor Signs Measure Reversing Voter Ethics
Governor of South Dakota signed a bill Thursday overturning an anti-corruption measure passed by a majority of voters in November, to the consternation of government watchdog groups.

Trump And His Organization Lawyer Up For The Ethics War Ahead
President Trump and the Trump Organization are beefing up their legal teams against an expected surge of conflict-of-interest allegations.

Teaching Ethics In The Trump Era
Graduate-level professor asks how to tell students ethics is important when “nothing around them feels ethical” re: Trump administration and conflicts of interest.

Bioethics

Human-pig hybrids might be unsettling. But they could save lives.
A new study out of California unsettled a lot of people last week after revealing that scientists had, for the first time, made part-human, part-pig embryos — referred to as “chimeras.” Raises ethical questions.

Could changing the way doctors are paid help narrow health disparities?
A study suggests that changing the way doctors and hospitals are paid could narrow some of the health disparities between poorer and wealthier patients.

Trump’s Supreme Court Pick Could Shape Bioethics for Generations
Neil Gorsuch, nominee for the US Supreme Court, has spent his career weighing matters of life and death. His views on life—that it is sacred and “intrinsically valuable”—are likely to shape court decisions in areas from abortion to assisted suicide for decades to come.

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The National Transgender Study is a Start – But More is Needed to Protect the Sexual Health of Transgender Teens

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On Thursday, December 9th, the largest survey of transgender people ever conducted was published by The National Center for Transgender Equality. The anonymous online survey had nearly 28,000 participants and found transgender people are twice as likely to live in poverty and three times more likely to be unemployed, according to an article in TIME Magazine. Other findings included that one-third of respondents reported issues in finding healthcare and 42%  reported higher rates of mistreatment by health care providers.

Fordham University Center for Ethics Education Director, Celia B. Fisher, Ph.D., lauded the recent national study highlighting the healthcare needs of transgender people in the United States. “More is needed on the health care experiences of transgender adolescents, especially their experiences with family physicians who often do not have the training to provide necessary gender affirming care,” she noted.

Fisher’s research with colleagues from Northwestern University, supported by the National Institute on Minority Health and Health Disparities (NIMHD), has highlighted the critical need for physicians who are trained and open to providing gender minority youth with not only transitioning information, but also gender and sexual orientation specific sexual health information and services to prevent HIV and related STIs.

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Fordham Study Addresses Health Care of Bisexual Adolescent Girls

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For bisexual female adolescents,  proper sexual healthcare is difficult to obtain due to healthcare providers’ judgmental attitudes and assumptions of patient heterosexuality, and lack of opportunities for HIV and sexually transmitted infections (STI) testing. Additionally, youth openness with healthcare providers is restricted due to stigma experienced within families of bisexual teen girls and concerns of confidentiality. These findings were published in LGBT Health, a Mary Ann Liebert, Inc. publication

Principle investigators of this NIH-funded study, Dr. Celia B. Fisher, Director of the Fordham University Center for Ethics Education and Dr. Brian Mustanski, Director of the Institute for Sexual and Gender Minority Health and Wellbeing, along with Drs. Miriam Arbeit and Kathryn Macapagal, describe these health care disparities in the article, Bisexual Invisibility and the Sexual Health Needs of Adolescent GirlsThe study analyzed bisexual female adolescents’ perspectives on their access to health information and services provided by health care professionals.

In addition to attitudes and assumptions of healthcare providers and stigma within families, the findings also included limited school-based sexual health education as an important factor contributing to insufficient health care for bisexual adolescent girls.

“The findings from our study are consistent with the unfortunate fact that sexual health care of adolescent girls has largely been absent or focused primarily on birth control tools that do not prevent risk of HIV and other STI – especially if male partners refuse to use condoms,” notes Fisher, Director of Fordham Center for Ethics Education, “and this problem is exacerbated for bisexual girls who may be unprepared for sexual experiences with male partners or who engage in such experiences to avoid social stigma.”

The researchers concluded that practitioners must improve standard sexual health practices involving female youth by integrating nonjudgmental questions regarding bisexuality. According to Fisher, the study “underscores the need for additional training of family physicians and gynecologists to engage in patient centered discussions that help to overcome bisexual invisibility and fears of medical discrimination that are barriers to bisexual girls sexual health.” In a recent article about the study, William Byne, MD, PhD of LGBT Health, adds, “Knowledge of a patient’s sexuality is essential to the biopsychosocial model of clinical practice.”

According to the study, other forms of support of bisexual health among adolescent girls include addressing stigma, increasing sensitivity to privacy and expansion of school-based sexual health education.

Read more about this research in the News Medical Life Sciences article as well as in LGBT Health.

Ethics & Society Newsfeed: October 14, 2016

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Health Care and Bioethics

DNA database highlights need for new medical privacy protections
Creation of a national repository of genetic information is seen by some as crucial to reducing medical costs and improving people’s healthcare.

‘Big data’ could mean big problems for people’s healthcare privacy
Public and private insurers are spending millions of dollars on systems that can predict people’s future healthcare needs.

Colorado Wrestles With Ethics Of Aid In Dying As Vote Looms
Colorado man says he would like the option to end his life rather than face a painful death and advocates for Colorado’s Proposition 106  or “death with dignity.”

The NIH needs to review the ethics of research on primates
Congress asked the National Institutes of Health to review “its ethical policies and processes” on nonhuman primate research “to ensure it has appropriate justification for animal research protocols.”

Breast Cancer Death Rates Are Down, But Racial Disparities Persist
Women are less likely to die of breast cancer than they were a decade ago, but not all women are benefiting from that trend.

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Medical Training for Transgender Patients Needs to Include Sensitivity to Social Stigmas for both Gender and Sexual Orientation

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The recently published article on doctor’s lack of expertise in treating transgender patients in The Guardian is an important step forward in highlighting current disparities in healthcare services for this population.  The study, based on interviews with sample of 23 physicians and psychologists who chose to work with transgender patients, focused on current challenges in providing gender affirming care for individuals who are seeking medically supported transitioning treatments, such as hormonal replacement therapies (HRT).

A recently completed study by Celia B. Fisher, Ph.D. and her colleagues, funded by the National Institute for Minority Health and Health Disparities (NIMHD) confirms the need for greater medical training, based on the reports of 228 transgender males, females and gender non-conforming youth ages 14 – 21.  “Fear of stigmatization is a significant barrier to healthcare among these youth,” notes Fisher, Director of Fordham University’s Center for Ethics Education, “and in our study, 51% reported they did not discuss their transgender identity with their primary health care providers out of fear that the provider would not be accepting.”

Continue reading “Medical Training for Transgender Patients Needs to Include Sensitivity to Social Stigmas for both Gender and Sexual Orientation”