Who Lives, Who Dies, Who Tells Your Story (May)

In May 2019, the Rights Writers discussed what perspectives have been left out of the major debates on their topics and how including them increase understanding or contribute to progress of the issue.

The pace of medical discovery is so staggering it is easy for even healthcare professionals to completely overlook. Technologies that were unimaginable a decade ago, like devices to artificially oxygenate your blood when your heart gives out, or portable machines that maintain consistent blood pressure powered by battery packs you can wear in a vest, have dramatically extended life expectancy for what were previously fatal conditions. As doctors’ ability to prolong life even in the face of chronic critical conditions increases, our conversations about quality of life tend to lag far behind. Without knowledge of the latest medical advances, how do advance directives affect the provision of medical care and one’s expectations of the quality of life to expect after a life-altering event like a heart attack or stroke? Quality of life conversations must constantly be reevaluated to assess how quality of life may be measured given the outcomes of prolonging life with critical care technologies. Organ transplantations remain some of the most dramatic and effective interventions to prolong life in a critically ill person. New technologies extend the time critically-ill people can wait on an organ transplant list before finding a match, creating a glut of potential organ recipients without a corresponding increase in altruistic organ donations. The problem these new life-prolonging critical care technologies present for medical providers, then, is how to determine who gets an organ and who does not based upon quality of life predictions. Uncertainty and ethical ambiguity cloud all organ matching strategies, but my goal is to present the creative ways some physician-bioethicists have attempted to confront the moral dilemma of how quality of life is measured considering population health disparities, how technologies to extend life impact quality of life, and whether organ transplantation will improve quality of life. Human rights of elders depend upon providing standardized, high quality care regardless of race, class, or location, and the scarcity of available organs presents an interesting challenge for equitable treatment access.

A thriving body of research exists solely to define the elusive concept of quality of life for people on different life-prolonging critical care technologies awaiting transplantation. For example, the American kidney transplant wait list, which contains over 100,000 people (and 3,000 new patients added every month) receives a new patient after individual doctors evaluate end-stage chronic renal disease or dialysis patients with any combination of three quality of life indicator scales. Medical providers subjectively determine which scales are important to consider when prioritizing patients who want kidneys to gain a clearer picture of whose quality of life would improve the most upon moving from dialysis to post-transplant immunosuppressants, which each carry their own list of positive and negative side effects. Attempts to measure quality of life while on dialysis, an exhausting and time-consuming life-prolonging critical care technology, include eleven biopsychosocial factors: effects of kidney disease on daily life, burden of kidney disease, cognitive function, work status, sexual function, quality of social interaction, sleep, social support, patient satisfaction, and dialysis staff encouragement.

Surgery in OR
Courtesy of Piron Guillaume

Interesting efforts to tease apart differences in quality of life post-kidney transplantation have found that kidney recipients have lower quality of life scores than the general US population and African-Americans have worse quality of life than Caucasians. Little research exists on how long-term survivors of organ transplantation, which is becoming increasingly common as the drugs and technologies to facilitate organ matching become more effective, affects quality of life in transplant recipients. Furthermore, the worrying finding that post-organ transplantation quality of life is reduced in African-Americans suggests that health disparities due to racism and systematic socioeconomic marginalization affect quality of life even after patients receive the same treatments at the same hospitals. If one accepts that health is a human right, then health disparities must be eliminated before an equal society can be achieved. Transplantation specialists should prioritize research into quality of life improvement among their organ recipient patients of color to elucidate the population groups experiencing the worst post-transplant outcomes and come up with a strategy to combat this unacceptable disparity. Some disparities are harder to overcome than others, however; the United Network for Organ Sharing, which matches all organ donor and recipient pairs in the Unites States, insists upon social support as a qualifier of transplantation. Those patients without at least three family members or friends who can devote significant time to coordinating their daily medical care will automatically be disqualified from receiving a lung donation, for example. Other organ transplantation programs like that for kidneys prioritize potential recipients who have a family or friend willing to donate to themselves or another potential recipient in what is called a “paired donation.” If due to socioeconomic marginalization, patients of color are less likely to meet these social support indicators, then they have less hope of receiving the life-prolonging benefit of organ transplantation. Doctors have good reason to want the limited supply of donated organs to go to patients willing and able to take good care of themselves, but social support indicators should be given a critical appraisal if they introduce racial health disparities into organ matching.

Pedestrian Stoplight in the UK
Courtesy of Xu Haiwei

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            Life-prolonging technologies have dramatically increased the number of patients on organ matching waiting lists, yet quality of life scales traditionally used to determine the best candidates for organ transplantation fail to keep pace with how changing technologies impact quality of life. The number and type of scale used varies by medical provider, and the scales themselves may be racially biased, indicating the need for further research and activism surrounding equitable organ matching. When need outpaces demand, ethical considerations of quality of life and the right to life-prolonging treatment become increasingly vital. Who gets a donated organ matters because transplantation is so often a few extra years of life, a chance to determine who lives, who dies, and who tells their own story.

Activism and End of Life Choice (April)

In April 2019, the Rights Writers discussed the role of advocacy groups and social movements in promoting human rights and social justice in their area.

Assisted dying is often an uncomfortable topic for the living. Social movements geared towards issues of “aid in dying” or “dying with dignity” have therefore first had to confront the social stigma surrounding talking about quality of life at the end of life. While the United States has made significant strides in tackling elder abuse and medical education on aging, it lags behind other countries in bringing aid in dying laws to a public stage. The story of one New Zealander provides a personal account of issues confronted by many older people across the world. Debra Hall wrote a public letter to New Zealand’s Parliament last month about her family’s brush with three “undignified deaths,”. The first was her aging father Deric, overtaken by terminal liver cancer and unable to even swallow during the last 48 hours of his life. The second was her father-in-law Sid, with persistent pain that brought out the worst in his children as they struggled to alleviate his pain. The third was her mother-in-law, who signed three directives indicating her wish to halt medical treatment if overtaken with dementia, but who still survived for years after losing recognition of her family and friends. Debra’s family’s story, and many others like it, form the foundation of New Zealand’s pro-End of Life Choice activism to reduce social stigma around end of life challenges and highlight the human rights issue of providing older adults the option to die with dignity. At the same time, anti-End of Life Choice activists have competed for media coverage with their own gripping personal narratives and documentaries. Regardless of where American activists fall on the spectrum of end of life human rights concerns, public organizers in the United States could learn from the strategies New Zealanders are employing to wage a battle for public opinion over the right to die with dignity.

            Parliamentary Member David Seymour, in partnership with Life Choice, introduced the End of Life Choice (ELC) bill in New Zealand for its first reading in December 2017. Advocates describe the bill as “giv[ing] people with a terminal illness or a grievous and irremediable medical condition the option of requesting assisted dying.” Just before the time of this blogpost’s publication, the Select Committee of New Zealand’s Parliament submitted its year-long review of public comments by both pro- and anti-ELC parties for a second reading to judge parliamentary support. Committee members further delayed Parliamentary debate of the ELC bill, recommending changes to allow for self-medication during assisted dying and excluding minors from eligibility. Activism has ramped up on both sides in recent weeks as the report is highly anticipated, bringing attention to the issue of patient rights near the end of life frequently overlooked in the United States and elsewhere. The pro-ELC camp has centered its activism efforts primarily upon framing end of life choice as a human rights issue being unmet by current medical options in New Zealand. In order to garner public sympathy, Life Choice has published a website explaining the political, moral, and legal rationale for passing such a contentious bill. Drawing upon the public’s pathos, pro-ELC activists have published a collection of people’s stories about parents, friends, or themselves dying without the option of euthanasia. Their stories are always personal and frequently heart-breaking.

Rose in Dark

While Seymour’s rationale for ELC is logical and compelling, it lacks the emotional punch of everyday citizens’ interactions with end of life medical care. It has been the personal stories, not the cold calculus of parliamentary bill development, that are picked up by the media. Speaking to the emotional, rather than rational, side of voters is not a strategy exclusively employed by ELC advocates, however. Sensationalist media coverage of complex cases where death with dignity becomes ambiguous or negative demonstrate how activists across the political spectrum utilize similar plans to whip up public support for their disparate causes.

            Anti-ELC activists have contributed their own important personal narratives to the debate over how to address the human rights issue of death with dignity, garnering significant media attention and energizing “no” voters with their targeted documentaries. While pro-ELC activists have been successful at framing death with dignity as a human rights issue, anti-ELC activists have been remarkably effective at countering the proposed bill by challenging its own ethical standing, while not proposing any human rights solutions of their own. Claire Freeman, a tetraplegic, shared her own struggles and triumph of coming to terms with her disability after almost taking the advice of her psychologist and medical providers to fly to Switzerland for legal assisted suicide. Doctors and older patients have come forward to caution against a wholehearted embrace of death with dignity laws without considering the social stigma surrounding older people and disabled people being perceived as a burden which might lead those people to feel pressured to accept euthanasia.

End of Life Care

Although some anti-ELC activists have played into unfounded fears of doctors forcefully delivering lethal medications to unwilling patients, in an effort to defeat Seymour’s bill, many others have raised legitimate concerns about patient-family-doctor power dynamics and the ability of cognitively or physically-impaired people to make such an important decision as ending their life. More than ELC advocates, anti-ELC activists have effectively utilized film to garner public support through documentaries which follow those who may have asked for euthanasia at one point in their lives but are grateful for not being given the option.

Whether through film or news articles, advocates on both sides of the death with dignity debate in New Zealand have effectively used the media to raise public awareness of patients considering life-ending options and to garner support for their side. End of life quality care improvement activists in the United States should follow pro-ELC activists’ strategy to use personal narratives to frame their issue as a challenge to human rights, while taking a page out of the anti-ELC activists’ book to produce their own short documentaries offering expert and patient testimonies to support their argument. Just as in New Zealand, the United States has ongoing debates about the right to die, with more and more states legalizing aid in dying in some instances. With increased reliance upon personal stories and the news and film media, activists could bring much-needed public attention to the right to die with dignity.

Tough Choices: End of Life Care in the Media (March)

In March 2019, the Rights Writers explore the role the media has played in covering their issues and what effects it has had — positive and negative.

For most Americans, end of life care does not typically become a topic of discussion until a loved one faces tough decisions about how they would like to spend their final days. As the US population ages and reporters and healthcare workers alike begin to understand the importance of starting end of life education as early as possible, end of life care has received increasing media attention. At last month’s Oscars ceremony, Rod Epstein and Jeffrey Friedman’s End Game, about five terminally-ill patients and their families navigating end of life care in San Francisco, was nominated for best documentary short. Two years prior, another documentary short about end of life care called Extremis (directed by Dan Krauss) was also nominated. The latter followed one Oakland, California palliative care physician in her hospital rounds, placing the thrust of the storytelling upon doctors’ struggle to counsel clients balancing survival odds with exhausting treatments and conflicting patient/family wishes. End Game and Extremis join a small but growing movement of media creations that shine a light on end of life concerns, illustrating powerful, realistic, and gut-wrenching moments of beauty and loss during the dying process while simultaneously demonstrating the need for more diverse end of life perspectives. It is the ethical imperative of journalists and filmmakers to show the complexity of how Americans from various cultures, religions, and regions experience the dying process so that all people may have the right to the end of life care they desire.

Until recently, the conversation surrounding end of life care in the media centered upon doctors debating medical ethics in journals and the popular press. Due to the demand for and prestige attached to prolific publishing in academia, physician-scientists have made their voices well heard in the national conversation surrounding the quality of life near death. In contrast, stigma surrounding discussing death in public has silenced all but a few non-specialists. Family members sharing their own experiences confronting financial, legal, and medical decisions upon the passing of a terminally ill parent or sibling highlight realistic and relatable concerns, relying more on experience than theory. Medical specialists who study end of life care may offer important theoretical critiques and policy recommendations to improve healthcare delivery to terminally ill, institutionalized patients; however, families’ emotional, distinctly human stories of heartbreak, confusion, grief, and acceptance when reflecting on end of life care after a loved one’s passing offer impactful testimonies of navigating challenges in life and healthcare. When doctors dominate the conversation on end of life care, patients and families’ concerns can fall through the cracks and those on the margins of society receive lower quality care. Extremis is a recent example of how the media tends to focus upon doctors’ struggle to provide helpful, balanced advice to their patients, while the media generally fails to center the voices of patients navigating an often confusing and overwhelming medical system.

end of the road
photo credit: Vera Davidova

Serving over 1.4 million Americans annually, hospice providers have become a significant voice in end of life dialogue. Their integrated compassionate care model has won many admirers since the movement developed out of England about half a century ago, yet the dominance of hospice in end of life concerns has led to conflation of both. It is important to distinguish hospice as a medical provision model for terminally ill adults that cannot and does not aspire to encompass the medical care of all dying patients. Hospice cannot singlehandedly address the human rights challenge of providing high-quality healthcare to dying patients. Not every dying patient is eligibile for hospice, not all who are eligibile live close enough to a hospice facility, and many marginalized dying patients do not desire hospice services for religious or cultural reasons. Media profiles of hospice providers, while important to recognize the work of dedicated medical professionals, do not address the end of life issues facing patients, families, and doctors who are concerned with unpredictable disease courses, or those for whom their culture, religion, or location precludes them from seeking hospice care.

hospital room
photo credit: Daan Stevens

A growing death-positive movement marked by the proliferation of “death cafes” and frank conversations about going through a dead parent’s belongings has welcomed more patient perspectives into the end of life national dialogue. Death cafes seek to address the ethical imperative of prioritizing patient rights and provide the general public a platform to discuss best practices for advocating for quality end of life care. By bringing intimate moments death and healing directly to audiences, documentaries are essential educational tools for the public to see how different Americans have died. While unsuccessful in its recent Oscar bid, End Game charged the media with renewed interest in how Americans die, revealing the end of life stories of five San Franciscans from diverse economic and racial backgrounds as they each processed their impending deaths through different medical choices that had profound consequences for their final days. Additionally, Duke Divinity Professor Kate Bowler’s reflection in the New York Times on her evolving end of life concerns throughout an adulthood spent studying the prosperity gospel, raising a young family, and being diagnosed with Stage IV cancer highlights how religion and life stages impact one’s perception of priorities that determine medical treatment and financial planning. If doctors do not understand how patients’ right to religious and cultural expression informs their end of life desires, then patients will not be able to design their healthcare plan to conform to deeply held beliefs and practices. In addition, if the general public does not understand how rural dying adults lack access to healthcare facilities, then attempts to bring equity to end of life care will remain inadequate. While the proliferation of end of life patient-centered narratives in the film and news has made conversations about financial, legal, and medical desires near dying harder for families to ignore, the media can do more to center the stories of diverse cultural, religious, and rural folks who have confronted dying to honor the many ways that Americans have handled the tricky questions that accompany the dying process.

Right (or Wrong) to Die (February)

For February 2019, the Rights Writers discuss their issues in the context of US political discourse (including public opinion), particularly in light of the two-year anniversary of Donald Trump’s presidency.

Like many other wealthy countries, the United States recently reached a critical demographic milestone in which its fertility rate fell below the replacement rate. Practically speaking, people are having living longer and having fewer children. Americans are aging, putting the concerns of the elderly on an unprecedented level of national importance. The right to die, also known by the more antiquated term, “physician-assisted suicide,” has galvanized religious leaders, legal experts, healthcare executives, and older Americans of diverse political persuasions to answer questions of human dignity and the limits of biomedicine’s ability to define the soul. In the privatized, institutionalized, litigious world of American healthcare, older patients frequently face political opposition on moral, religious, and legal grounds when they make the difficult decision to hasten their own death.

The most famous line of the Hippocratic Oath declares “First, do no harm.” In a pluralist society like the United States, doctors recognize that they must respect the sincerely-held religious beliefs of patients, but rarely confront how their own religious or moral beliefs may conflict with the treatments their patients ask of them. As individuals protected by the First Amendment, may doctors refuse treatment based upon their religious tenets? Trump’s first Supreme Court Justice pick, Neil Gorsuch, would say so. The controversial justice made headlines during his confirmation hearing when his 2004 philosophy of law dissertation and 2009 book surfaced, in which he argued that doctors have a right to refuse euthanasia or assisted suicide based upon the medical providers’ constitutionally-guaranteed religious freedom. Gorsuch is not the first conservative political appointee to make such an appeal to religious freedom—George W. Bush’s Attorney General, John Ashcroft, attempted to overturn Oregon’s right to die law by declaring that doctors who prescribed lethal substances were in violation of the federal Controlled Substances Act. His directive was struck down by the Supreme Court, but after two conservative nominees to the Court by President Trump tilted the political favor of its legal rulings, the future of right to die laws is more tenuous than ever.

Choosing to end one’s life is rarely an easy or happy decision, no matter how much pain you are in or how supportive your loved ones might be. Right to die advocacy groups do not insist that doctors or hospital systems violate religious doctrine, but they do ask that patients with chronic illnesses be given the option to choose a quick, painless death. Lack of public awareness and stigma remain major hurdles to overcome if the laws are to reach a greater number of their target population. The suicide rate of white men over the age of 85 is 40 per 100,000, over twice that of any other demographic by age and race. Many use guns to put an end to chronic pain and loneliness. Public health researchers have long advocated that improved case management and right to die laws would increase quality of life near the end of life, both for the patients and their families.



There are myriad reasons why an older patient might want to pass away with medical assistance. Invoking one’s “right to die” means the patient wants to end their life on their own terms, quickly and painlessly. Often, they have suffered a long, debilitating illness that drastically reduced their quality of life without hope of recovery. To date, seven states and the District of Columbia recognize the right of die of chronically ill adults determined to be cognitively sound by two psychologists. Even in those states, the patient must jump through numerous bureaucratic hurdles, find a doctor willing to prescribe the self-administered lethal injection, and obey a mandatory waiting period of several months. Through the political hurdles an interesting paradox emerges: The majority of Americans back the right to die, and support for the measure is growing, yet very few people have taken advantage of the right to die of their own accord.  



Since Oregon became the first state to legalize the right to die in 1997, only three thousand Americans have opted to receive the lethal, painless injection. Many rural Oregonians still do not have access to a physician providing right to die services within one hundred miles of their home. Healthcare systems sometimes hesitate to provide right to die services due to religious, moral, or financial/legal reasons. Several faith-affiliated hospital systems choose to opt out of providing dying with dignity services. For example, the Catholic Church interprets aiding the onset of death as a challenge to its fundamental mandate to preserve life, so Catholic hospitals are prohibited from offering lethal injections. For others, hastening death is anathema to the biomedical ethos of extending life at all costs. Dr. Alan Williamson, vice president of medical affairs of the secular non-profit Eisenhower Medical Center, explains, “[Our] mission recognizes that death is a natural stage of the life journey and Eisenhower will not intentionally hasten it.” Hospital executives worry about grieving family members suing and spreading bad publicity. Concerns surrounding the ethics of right to die laws are valid and require further conversation with all impacted parties, political, religious, moral, and medical. Ultimately, it is up to voters to advocate for or against proposed right to die laws in the balance of preserving life at all costs on the one hand versus empowering older adults to control their time of death on the other.

Extending the right to die painlessly is a human rights issue. With more tough conversations and public education, Americans are increasingly choosing to prioritize the legalization of right to die in all states and celebrate the bravery of older people who choose to end their life on their own terms.

Challenges Facing Elder Rights in the US (January)

For our first month, January 2019, the Rights Writers introduce their topics and give an overview of the main actors and debates.

Navigating a retirement home is confusing. The hallways are long and crooked, bending in odd directions like fingers twisted by rheumatism. After my first visit to Croasdaile Village to visit a hospice patient, I learned that retirement homes’ nonintuitive design is intentional. Closed doors visible down straight halls would too clearly signal dependency, a denial of freedom, a negative punishment that emphasizes residents’ trapped mental, physical, and emotional state. In a clever psychological trick, winding hallways and passcode-protected exits offer residents a sense of agency that gives them the illusion of entering and exiting spaces as they please.

In reality, a certain part of older people’s agency is signed away when they or their family members approve the stack of legal forms that accompanies major life transitions like entering a nursing home. Wandering those halls in circles with the hospice patient week after week, I began wondering how agency factors into important issues facing older people involving the places they walk, pills they take, and demands they make. Are their opinions valued because they are intelligent humans with vast life experience or derided because their age perhaps suggests declining cognitive capacity? More specifically, I was disturbed by the lack of human rights discourse I found when interrogating a problem uniquely encompassed within my blogpost series topic of end of life care, a problem facing the aging worldwide: elder abuse.

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            Elder abuse can take the form of physical, emotional, or sexual abuse, financial exploitation, neglect, or abandonment. The National Center on Elder Abuse estimates that about two million older people are abused each year in the United States, although data collection is flawed due to lack of consensus on how to define elder abuse, underreporting of abuse, and little public awareness of the issue. Throughout this blog series, I will focus on topics pertaining to elder abuse, exploring the challenges the American aging population faces from a human rights perspective. Elder abuse is preventable, but we must listen to our aging friends and relatives to gauge their concerns, educate ourselves on existing elder abuse research, spread awareness, and make sure we consider how personal and cultural expectations influence older adults’ expectations of care. While often less vocal and visible than younger Americans, older people deserve the same amount of respect and compassion.

Elder rights is a human rights issue. Article 25 of the Universal Declaration of Human Rights adopted by the UN in 1948 resolves that “Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including…medical care and necessary social services.” Older people are not explicitly mentioned in the Declaration, so they are often overlooked despite the broad language of the original document. Yet as the population of the United States continues to age, the public must be more vigilant than ever to protect older people’s access to medical care and social services free from abuse. Lack of public awareness of aging-related issues is getting old. It is time to become educated about elder abuse so that we can protect our older neighbors, and eventually ourselves, from mistreatment.

            One of the biggest issues facing elder abuse activists is how to define such abuse. For behavior that qualifies as elder neglect changes depending on the physical, mental, and emotional capacity of the older person in question; as a degenerative disease progresses, the older person loses a capacity for independence and relies upon intensified care. Medical providers of older people may disagree with their patients about deleterious relationships with friends, family, or strangers because the patients cannot view their own declining health with the diagnostic benefits of objectivity and emotional distance. In contrast, cultural differences between older patients and their caretakers may result in older people suffering silently because their cultural expectations of care when aging are not being met. In parts of South and Southeast Asia, spirituality and religion are intertwined into religious life to the extent that many families of patients expect healthcare providers to pray with their charges or provide spiritual counsel when asked. In contrast, American healthcare providers often feel uncomfortable providing any kind of spiritual care, even to religious patients nearing the end of their life and are unequipped to deal with patients of religious backgrounds different from their own. Thus, definitions of elder abuse must be grounded in the lived experiences of older people, incorporating cultural expectations and disease diagnoses into considerations of whether questionable behavior is indeed abusive to older folks.

            The National Council on Aging estimates that as little as one in fourteen elder abuse cases are reported to authorities, and far fewer prosecuted. Almost 60% of perpetrators are family members. Researchers disagree on the most common types of abuse, which are likely co-dependent on the environment and socioeconomic status of the older person. While it may seem common sensical that elder abuse is injurious to health, its effects are staggering. Any type of abuse triples an older person’s risk of death. Premature deaths and exacerbated health concerns caused by elder abuse wreak a heavy cost upon Medicare and private insurance companies; therefore, elder abuse should be a concern of both public and private healthcare. Elder abuse remains underreported, however, because many medical and nursing curricula decline to cover elder abuse identification and prevention. When the survivors or caretakers of survivors go public with their accusations, the path to financial and legal settlements is often unclear, frustrating overworked caretakers and older patients without access to informed advocates.

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            Novel residential models are beginning to pop up in areas like Seattle and the Netherlands where older residents live in cooperatives side-by-side with college students or preschoolers. These alternative nursing homes hope to curb elder abuse by increasing older people’s social access to younger residents who can monitor their quality of care. Advocates in Washington DC are learning from Denmark’s example of diversified home care to empower older people to continue living in their home through subsidized installation of accommodation appliances in the home and senior centers offering social services during the day. While no easy solutions exist to eradicate elder abuse, offering alternative residential options to limit isolation of elders in nursing homes will empower older people to have more say over their home and medical arrangements.

            Lacking prevention education, how do bystanders stop elder abuse from happening? Interest in elder abuse is necessary in the general public to incite widespread reform. The overwhelming majority of elder abuse happens in private confines of homes and institutions, away from public consciousness. Older people may not ask for help preventing their abuse due to shame surrounding the eventual, natural physical and cognitive decline that accompanies aging. Curricula for doctors and nurses who will likely care for many older people in their careers must include bystander intervention training for elder abuse. Younger members of families should educate themselves about elder abuse and common concerns of the elderly available through the CDC, WHO, and other accredited organizations dealing with aging populations. Most importantly, older people are themselves the best resources for reporting concerns about abusive concerns: their objections should be taken seriously and thoroughly investigated as befitting the human dignity they possess.