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I was contacted recently about taking a role in an end of life care case in Indiana, by a colleague in the Midwest who thought my expertise in patient rights might be of assistance.
An 83 year old woman, whom I will call Gail, was living with Alzheimer’s disease. She resided in her own home, with a son and daughter. Gail had told her children that she never wanted to live in an institutional setting; continuing to live in her own home was important to her. Another daughter lived nearby. Her husband of 50 years, who predeceased her, was a United Methodist Minister; Gail became a Diaconal Minister and served at a United Methodist Church. Gail remained good natured, even as her disease advanced she retained a wry sense of humor; she enjoyed listening to NPR and watching birds at her feeders. She largely used a wheelchair for mobility, but would exercise by “walking” to the bathroom when her son supported her beneath her arms, praising her effort. Gail was well cared for, and a valued member of the family.
Her children had heard their mother express her view over the years that she would want medical treatment unless she was a “total vegetable”. These statements guided the children in making medical care decisions for their mother; the siblings conferred about how best to care for Gail. They took her to the hospital when health concerns could not be treated at home.
In the events leading to Gail’s death, her children had taken her to the hospital concerned about possible pneumonia. The family informed the hospital and the attending physician that Gail was to be a ‘full code’ patient, meaning medical treatment to extend her life should be provided.
Notwithstanding this clear direction, the hospital on its own volition, in direct conflict with the expressed wishes of its patient, designated Gail a “No Code/Do Not Resuscitate” (“DNR”) patient, meaning that hospital staff would not attempt to resuscitate her or provide life prolonging treatment. The hospital did not receive approval from any family member to so designate Gail.
Soon after entering the DNR, Gail suffered a heart attack, witnessed by her daughter. The daughter immediately called for help, but despite her pleas, no nurses or doctors began resuscitative efforts. The daughter began mouth to mouth and CPR, while shouting repeatedly: “She’s not DNR”. Finally the providers took Gail to the ICU, and she survived this crisis. A few days later Gail suffered a collapsed lung. Even though, the hospital was aware of the lung it did nothing to treat it. Overwhelming infection and septic shock ensued and Gail ultimately died due to the lack of treatment.
“This is an important issue that demands attention,” said Melissa Keyes, Legal & Advocacy Services Director, Indiana Protection & Advocacy Services.
Whether to accept life prolonging medical treatment at an advanced age, burdened with Alzheimer’s, is a profoundly personal decision. Views on this will vary, based on the values, beliefs and preferences of the individual. Patients are encouraged to think carefully about what medical care would be wanted if they were to enter such a situation and to inform family members and physicians of their preferences. Law, policy and medical ethics are in agreement: Patients’ wishes should be respected. To ignore the wishes of a patient, even though the patient has Alzheimer’s, is a grave affront to personal autonomy and civil liberties.
DRLC is dedicated to the principle that each individual be empowered with information, control and autonomy over his or her body, life and medical decision making. Through its End of Life Liberty Project, launched in 2014, DRLC advocates on behalf of seriously ill and dying patients to protect and expand their rights at end of life.
Kia ora! This is the Māori language greeting which has entered New Zealand English. I am in New Zealand to begin a series of visits to Universities as a Fulbright Specialist, a program of the U.S. Department of State’s Bureau of Educational and Cultural Affairs and the Institute of International Education’s Council for International Exchange of Scholars. I will be sharing scholarship about the evolving landscape in law, policy and medicine in the United States governing end of life care, and the trend toward empowering terminally ill patients with more information, autonomy and control at end of life. I will serve as Visiting Faculty at the University of Auckland, University of Otago and University of Canterbury.
I look forward to learning more about the beautiful country of New Zealand, its people, society, law, government and culture. The outstanding staff at DRLC will continue to champion the rights of people with disabilities while I am away.
Kathryn L. Tucker
Our local NPR station, KPCC, recently ran a story about the ACLU’s challenge to the policies of a public charter school in San Bernardino, the Public Safety Academy, which mandates expulsion if students do not maintain a set grade point average and achieve satisfactory scores from specific standardized tests in English and math. This particular charter school prepares students for careers in law enforcement. ACLU contends these policies violate state law because charter schools are public and must serve all students who wish to attend.
DLRC, with co-counsel, Foley & Lardner, LLP, are currently litigating a similar case in federal court against Public Safety Academy, advancing an argument from a disability rights perspective. We represent a student with a disability threatened with removal from the school as a result of the policy. DRLC asserts that the screening devices employed impermissibly discriminate against students with disabilities who require individualized education plans and additional resources to succeed in school.
These requirements go beyond common policies adapted by charter schools, according to the California Charter Schools Association.
DRLC is proud to stand up for this student, who was humiliated and distressed by the School’s effort to force him out of the program and end his dream of serving the people of California.
Kathryn L. Tucker
It has been an exciting week for DRLC. On Wednesday, the 11th, DRLC filed a case in California state court advocating for a particular community of persons with disabilities-those brought about by advanced and terminal illness--to be empowered to make their own autonomous informed decisions about how much suffering to endure in the face of death.
This case, Brody, et. al v. Harris, seeks to clarify the ability of mentally competent, terminally ill Californians to obtain aid in dying from their physician. The plaintiffs, patients and doctors, are asking the court to declare that physicians who provide a prescription for medication to a mentally competent terminally ill patient should not be subject to criminal prosecution under existing California law, which prohibits “assisting suicide”. The choice of a dying patient for a peaceful death is no sort of “suicide”; what is bringing such individual’s life to an end is the inexorable advance of their illness. The case also asserts that the choice of a mentally competent person of how much suffering to bear before death from terminal illness is a deeply personal one and protected by the California Constitution’s guarantees of privacy and liberty.
The legal arguments in California are similar to those in a case DRLC filed in New York just one week before, and to those advanced in a case I am involved with in New Mexico. In NM the lower court recognized that choosing a peaceful death through aid in dying is a fundamental right deserving of protecting under the State Constitution. Appeal is pending.
In a recent interview on Air Talk, NPR Southern California radio KPCC, callers shared their own end of life stories involving those they loved, reflecting overwhelming support for empowering dying patients with autonomy to choose a peaceful death through aid in dying.
Do you have a story to share with DRLC? Send your stories to DRLC@drlc.lls.edu
We will reprint some of them on this website. Please let us know if you wish your story to remain anonymous.
I am pleased to announce the filing of a case in New York seeking to expand end of life choices available to mentally competent terminally ill patients to include the option of aid in dying (click here to read a copy of the filed complaint). As a national civil rights organization whose mission is to champion the rights of people with disabilities, Disability Rights Legal Center engages in advocacy on behalf of people with all types of disabilities, including patients with advanced stage cancer, ALS, and HIV/AIDS. For patients facing a dying process they find unbearable, we are proud to champion their right to be able to choose a peaceful death, on their own terms, at home, surrounded by loved ones, at a time of their choosing. We know from nearly 20 years of experience in Oregon, and more recently in Washington, Montana, Vermont and New Mexico, that when the option of aid in dying is available to mentally competent terminally ill patients, there is no harm to persons in vulnerable populations, including persons with disabilities. Several years ago I had the privilege to work with the American Public Health Association (APHA), the nation’s oldest and largest organization dedicated to protecting the health of the citizens of this nation, on a policy governing aid in dying. I worked closely with the Disability Section of the APHA, which raised concerns about possible harm to persons with disabilities. After 2 years of careful review of all the data pertinent to the question of whether harm was caused, the APHA concluded there was no evidence of harm and adopted a policy supportive of aid in dying. Click here to read APHA's policy.
This new suit, brought on behalf of a woman with advanced ALS and a man dying of AIDS, along with respected physicians who treat patients with these conditions, advances DRLC’s mission of fighting for people with disabilities in all types of circumstances when their rights are being ignored, obstructed or challenged. DRLC hopes to be a strong advocate for the rights of individuals who find themselves at the very end of life due to terminal illness, empowering them to be able to make informed, autonomous decisions about their own lives and medical care.
Kathryn L. Tucker
DRLC achieved a significant victory on behalf of an HIV+ patient against a medical facility which disclosed the patient’s HIV status in contravention of the patient’s explicit instructions. The unauthorized disclosure caused significant harm to the patient, who was then denied the right to return to the family home and lost both financial and emotional support of the family. DRLC filed suit on behalf of the patient and succeeded in negotiating a settlement favorable to the patient. One component of the settlement, the specific terms of which remain confidential, requires significant improvement in the policies, practices and procedures of the defendant medical facility to ensure that patient confidentiality is not violated in the future. DRLC is proud to be a strong advocate of protecting the confidentiality of medical information and ensuring that patient wishes with regard to their medical information are respected.
Kathryn L. Tucker
Compton is a diverse inner suburb of Los Angeles. Many now- famous professional athletes attended school here, including NBA players DeMar DeRozan, Tayshaun Prince, Tyson Chandler and Brandon Jennings. Yet none of these athletes were forced to sit at the edge of a playground watching other children play with no opportunity to participate. Our client, ST, was.
ST is a ten year old with multiple disabilities, including cerebral palsy and spastic quadriplegia, requiring the use of a wheelchair. Unlike her school friends, ST could not move freely through her school building because it was not built to allow her access: she could get into the library in her wheelchair but once there couldn’t turn, nor could she use the restroom in the cafeteria or access the stage. Her wheelchair would tip over when she used the walkways to her classroom. If she was thirsty, she couldn’t make use of the inaccessible water fountains.
DRLC challenged these violations of ST’s rights by bringing suit under the Americans with Disabilities Act and other related laws. This week a settlement favorable to ST was reached with the Compton school district. As part of the settlement, barriers to access will be removed: there will be guard rails on the walkways to classrooms; all children with mobility impairments will be able to use the library, cafeteria, and play on accessible playground equipment; and the parking lot is being repaved and restriped so there will be no chance of a wheelchair or walker tipping over on the way to car or school bus. And all the students in the school will soon be able to get a drink from a water fountain.
Special thanks to DRLC Managing Attorney Maronel Barajas and Staff Attorney Anna Rivera for achieving educational justice for our client.
Kathryn L. Tucker
Last week, California became the first state in the nation to restrict school suspensions and expulsions for “willful defiance” (AB 420, a bill supported by DRLC). Willful defiance is a vague charge that can be used any time a child appears to be defying authority. The law bans suspensions and expulsions for “willful defiance” for students in grades K-3, and requires that schools use other methods of discipline for students in grades 4-12 before they suspend on this ground.
Statistics show that suspensions and expulsions disproportionately impact students with disabilities, as well as students of color. Students with disabilities are suspended 3 times more often than those without disabilities. In San Bernardino County, 60% of African American male students with a disability and 50% of Native American male students with a disability will be suspended or expelled in a school year. There is also a significant racial disparity, not only in terms of suspension rates but justification for suspension. White students are much more likely to be suspended for conduct involving violence or drugs, whereas Black students are more likely to be suspended for vague charges like “willful defiance.”
DRLC has been in leadership in championing the rights of young students who have been expelled on defiance grounds, recently resolving such a case involving a five year old kindergartener; the settlement requires that the student be reinstated. We are pleased to see AB 420 enacted: it will help protect young children and encourage schools to provide them with the help they need, rather than suspending or expelling them if they have difficulties learning or behaving in school.
This will benefit students in myriad ways, including reducing the likelihood that they will end up in the criminal justice system.
Kathryn L. Tucker
**Case worked on by: H. Joseph Escher III, Dechert LLP; Amanda D. Gossai, Dechert LLP; Laura Faer, Public Counsel; Maronel Barajas, DRLC; Anna Rivera, DRLC; and Andrea Smith, DRLC.
"I want to go home, to my books and my music,” he said, his voice whispery but intense.
All Americans should be outraged by the shocking story on the front page of the NY Times last Friday, September 26th, titled “Fighting to Honor a Father’s Last Wish: To Die at Home.”
That a 91 year old man, approaching the end of a long life and suffering multiple age related impairments, was forced against his will, in violation of his clearly expressed wishes, into institutional care, isolated from his family, segregated from community, is wrong. “I want to go home” Joe Andrey repeatedly told his daughter and everyone involved in his care. Despite this clear desire, and the dedicated advocacy of his daughter to see his wishes respected, Joe was forced into a nursing home far from his daughter and his home, where residents were left sitting in their excrement, falls from bed were common, and pain medication was not provided.
Governmental programs, particularly Medicaid, are required by law to offer alternatives to nursing homes and to enable elderly individuals with medical problems to receive services in their home, instead of being forced into a nursing home. The disability rights movement worked long and hard to combat forced institutionalization of persons with disabilities. It is time for this battle to be taken to the field of forced institutionalization of seniors like Joe Andrey.
To read a copy of the NY Times article, please click here.
Kathryn L. Tucker
I am honored to be the new Executive Director of DRLC and build on the extraordinary legacy left by my predecessor, Paula D. Pearlman.
I am eager to carry out DRLC’s mission of fighting for people with disabilities in all types of circumstances when their rights are being ignored, obstructed or challenged.
I am confident that my expertise in advocacy will strengthen DRLC’s capacity to work for all people with disabilities, and expand its ability to effectively represent clients with terminal illnesses on a host of issues and in a variety of legal areas.
I am looking forward to our upcoming FDR Dinner, DRLC’s 40th anniversary in 2015, and working with the incredible and dedicated staff of our organization.