From The Silver Standard’s Elder Abuse Reform Now Project: RIGHT-TO-DIE LAWS HASTEN EXPENDABLE HUMANITY

By Romona Paden

Fifty years ago, Western society cherished its life-affirming attitudes, but contemporary society has moved a long way from those norms.

In 1975, 21-year-old Karen Ann Quinlan fell into a vegetative state after mixing alcohol and Valium. When Quinlan’s parents requested removal of the life-support respirator administered by doctors, local prosecutors threatened homicide charges against any hospital official who complied.

As the case entered the legal sphere, much centered on the definition and application of “extraordinary means” of life-saving care. Finally, a decision was handed down by the New Jersey Supreme Court allowing for the removal of the respirator. Miss Quinlan, however, continued breathing on her own and lived ten more years in a nursing home nourished through a feeding tube.
“We never wanted her to die,” Quinlan’s mother said of the situation.

The layers of nuance in the Quinlan case spurred a national debate around morals, bioethics, and euthanasia. The progression of the debate to 2019 demonstrates a slippery slide as legislators around the country embrace and promote the death option—especially for society’s most vulnerable populations.

Euthanasia, mercy killing, and assisted suicide target disabled and elderly elements of the population. Regardless of what it’s called, proponents of these legal positions in other countries have wholeheartedly embraced the notion of disposable humanity.

Legislators wrestle with efforts to create an “acceptable” legal definition of characteristics associated with legitimate reasons to permit the withdrawal of a life. Known under a variety of euphemisms, right-to-die legislation—euthanasia, physician-assisted suicide, death with dignity, and so on—embraces the pursuit of death.

Death with Dignity, an organization promoting the “basic idea that it is the terminally ill people, not government...politicians...or religious leaders…who should make their end-of-life decisions” believes that people have the right to decide how much pain and suffering they must endure and determine when death has become the preferable option.

Despite the irony of seeking legislation in order to avoid state and institutional interference, the Death with Dignity statement speaks to a well-meaning position centered on enabling an escape plan for those faced with an unyielding circumstance.

But from a rational perspective, our understandable sympathy begets unintended—and to many, unacceptable—consequences. In countries where assisted suicide is legal, it is also more and more frequent, with proliferating accounts of unrequested doctor-assisted deaths.

In the United States, according to one report, an intensive-care doctor prescribed “excessive” pain medication, far beyond what was needed to provide comfort and at a potentially fatal level, to at least 27 patients between 2015 and 2018. Each of the affected patients was described as having been near death. Each patient’s family members had requested halting life-saving measures.

The story becomes even more egregious considering that pharmacists and nurses assisting with patient care acted in support of the doctor. If prosecutors prove allegations, it demonstrates staffers’ belief in right-do-die propaganda.

In Belgium and the Netherlands, “euthanasia of people with mental illnesses or cognitive disorders, including dementia, is now a common occurrence,” according to The Wall Street Journal. Bureaucrats defend the practice, which includes euthanizing patients in their 20s and 30s who are diagnosed with mental illness, as wholly in keeping within legal guidelines. Of course, this ignores the essential objections: Are the mentally ill less capable of forming a “true will”? Are their intentions intrinsically more difficult for a doctor—or anyone—to establish? Are they capable of evaluating a situation that asks them to make a life-or-death decision? Do we have the right to decide that their intellectual limitations make them so invaluable as human beings that we can simply dispose of them? In some countries the answer is yes. Is that an answer we Americans have come to feel comfortable with?

Too frequently, the establishment demonstrates excessive mission-driven zeal in executing right-to-die actions, and the public as well is beginning to demonstrate a finance-driven philosophy. In a 2013 study of 84 Facebook groups comprised of 20 to 29 year olds, university researchers reported pervasive comments like, “Seniors are burden to society,” “I hate everything about them,” “They don’t contribute to society,” as well as the desire to see “anyone over age 69 immediately be put in front of a firing squad!”

Underscoring this, former President Obama addressed the issue of end-of-life care costs by suggesting, “Maybe you’re better off not having the surgery, but taking the painkiller.” Perhaps it is the pressure of crushing student loan debt and low-wage jobs that contribute to the callousness and animosity of these young people, but would they make the same proclamations if the elderly people in question were their parents or grandparents?

“There is a growing tendency to promote ‘mercy killing’ as a solution to not just suffering, pain, but aging, mental or physical challenges, social ills, and even rising health costs and cost containment,” according to the Euthanasia Prevention Coalition’s (EPC) list of concerns. Other EPC observations include:

• Sanction of euthanasia and assisted suicide as a gateway to euthanasia without consent, circumvention of the law, and abuse of vulnerable citizens
• Threats to hospice and palliative care and pain management advances
• Lack of instruction to medical professionals regarding hospice and palliative care and effective pain control
• Lack of willingness to acknowledge depression as a common factor in right-to-die requests and then to treat the depression

EPC members “believe that euthanasia and assisted suicide should continue to be treated as murder/homicide, irrespective of whether the person killed has consented to be killed.”

Well-intentioned government involvement will invariably develop into mission creep. Oregon is a case in point. The northwestern state spearheaded the right-to-die movement two decades ago. Dubbed Dr. Death in press reports at the time, Jack Kevorkian brought the right-to-die issue to national conversation for his advocacy of physician-assisted suicide.

“Dying is not a crime,” the pathologist said in promoting his pro-death position in the late 1990s.
Included among the individuals Kevorkian assisted in dying were people who were not suffering from any terminal illness as well as some with a history of depression.

Nevertheless, legislators ultimately adopted the Oregon Death with Dignity Act, which went into effect in 1998. In the 21 years since adoption of the “world’s first assisted dying statute,” according to its website’s information, “a total of 2,216 people has received prescriptions under the Act, of whom 1,459, or 65.8 percent, have died from ingesting lethal doses of medications.”

In a January 2019 Euthanasia Prevention Coalition blog entry, Executive Director Alex Schadenberg responded to the information by pointing out that the Oregon Health Authority (OHA) once again achieved their standard year-over-year increase of right-to-die deaths in the state.

OHA information describes victims of these deaths as mostly over age 65 with a diagnosis of cancer. “Similarly, the most frequently reported end-of-life concerns were loss of autonomy (91.7%), decreasing ability to participate in activities that made life enjoyable (90.5%), and loss of dignity (66.7%).”

Despite a history of right-to-die program growth, OHA officials currently seek an expansion of definitions within the law. Under the death-creep move, terminally ill patients include those who refuse medical treatment and “therefore the new definition of terminal has an undefined and nearly unlimited application,” Schadenberg writes. “Many people who are not close to being ‘terminally’ ill have a disease that will, within reasonable medical judgement, produce or substantially contribute to death.” Including the refusal of medical treatment within the definition “enables wide-open assisted suicide.”

Still, the state’s presumptive position serves as a model for other states around the country. Washington adopted its version of the right-to-die law in 2008, and then Vermont followed suit in 2013. Since 2015, legislative bodies in California, Colorado, Hawaii, and Washington D.C. each implemented right-to-die statutes.

In a right-to-die bill under consideration within the New Mexico legislature, which Schadenberg describes as the “most extreme assisted suicide bill I have seen,” assisted suicide allowances extend to patients with psychiatric conditions and undefined “terminal” prognosis with lethal injections administered by non-doctor medical professionals—nurses and physician assistants. The bill even grants assisted suicide approvals via telemedicine.

Current legislative right-to-die debates for 2019 are also on the table for Arizona, Arkansas, Connecticut, Delaware, Indiana, Iowa, Kansas, Maine, Maryland, Massachusetts, Michigan, Minnesota, Nevada, New Jersey, New Mexico, New York, North Carolina, Rhode Island, Utah, and Virginia.

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From The Silver Standard’s Elder Abuse Reform Now Project: RIGHT-TO-DIE LAWS HASTEN EXPENDABLE HUMANITY

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Embracing The Role Of Family Caregivers In The U.S. Health System

One of the clear trends emerging from U.S. health reform is the transition from a provider and procedure focused system to one that puts the patient at the center of care. “Patient-centered care” is defined as “providing care that is respectful of, and responsive to, individual patient preferences, needs and values.”

While most physicians build patient partnerships guided by individual patient needs and values, at the system level, we are just now beginning to embrace patient-centered care. As the health system fully considers the comprehensive needs of each patient, we are starting to recognize the critical role that family caregivers play in patient satisfaction and health outcomes. This is especially true for elderly patients that want to age-in-place at home, and depend on support from family members and loved-ones to manage their care. Common sense and an emerging body of evidence tell us that the integration of informal caregivers into the U.S. health system holds tremendous promise for improving the well being of patients while having the potential to reduce costs associated with hospital readmissions and nursing home care.

As individuals age, their need for both medical and nonmedical services and supports increases. Millions of aging Americans receive help with their activities of daily living (ADLs) — such as getting dressed, bathing, and getting around the house. The number of Americans who need help with ADLs and other activities such as paying bills or taking medications (collectively called “long-term services and supports” or “LTSS”) is expected to rise from 12 million today to over 27 million in 2050. According to the Congressional Budget Office (CBO), 20 percent of individuals over age 65 and 41 percent of individuals over age 85 need assistance with at least one ADL.

We recently published a report at the University of Pittsburgh, Addressing the Needs of Caregivers at Risk: The Policy Landscape. In it we review current policies addressing the needs of family caregivers, evaluate emerging evidence on the effectiveness of these policies, and suggest some potential new policy approaches, which we will discuss in the following blog post.

The Cost of Long-Term Care

Daily help with LTSS can come from paid, formal sources, such as a nursing home or home care agency, or unpaid informal sources, such as family members or friends. According to the Institute of Medicine, there are somewhere between 29 and 52 million unpaid caregivers nationally. Long-term care is costly, and assistance from family caregivers helps to alleviate the financial burden for those in need of care.

However, family caregiving can take a large financial, emotional, and physical toll on the caregiver. According to the AARP, the value of informal caregiving provided to adults was approximately $470 billion in 2013. Additionally, close to one out of 10 Americans over the age of 40 are both providing LTSS assistance to a family member and supporting a child. The emotional, social, physical, and financial burden on this “sandwich generation,” is significant.

Few Americans consider their need for LTSS when planning for their financial future. According to recent survey data, only 53 percent of Americans over age 40 believe that they will eventually need some form of ongoing living assistance. A very small portion of the population—only about 5 to 7 percent over age 45—carries long-term care insurance.

Though most Americans prefer to remain at home as they age, the cost of long-term care is high, and can quickly exceed the retirement savings of the average American. The estimated annual cost of nursing home care is $91,250 for a private room and $45,760 for a home health aide. According to a recent study based on data from the Federal Reserve Survey of Consumer Finances, among working age households with individuals aged 55 to 64, the average savings balance was $104,000 in 2013.

The same study found that 45 percent of American households have no retirement savings.

While Medicare provides health care coverage to seniors, many Americans don’t realize that Medicare coverage of long-term care is extremely limited. Medicare only covers a short duration of “medically necessary” home or nursing facility care following an episode of acute illness — it won’t pay for ongoing nursing home care or home health aide services. Given these limitations, many Americans either pay out of pocket for LTSS services, or turn to their family members for assistance. About 20 percent of LTSS spending in the US is out of pocket spending.

In contrast, the Medicaid program, which covers about 70 million children and adults annually, pays for long-term care services in both the home and institutional settings for the low-income elderly and disabled. Medicaid is the largest payer for LTSS in the United States, encompassing over half of total spending. As the population ages, Medicaid will also fund LTSS for individuals who “spend down” into the program. Because so many Americans do not have a plan in place to meet future long-term care needs, those with income that currently exceeds Medicaid qualification may “spend down” into poverty and enter the Medicaid program when they can no longer afford to pay for a nursing home or other LTSS out of pocket.

Because of the potential for spend down, Medicaid serves as a safety net for the entire population. The Congressional Budget Office (CBO) estimates that spending on LTSS as a percent of the GDP could more than double by 2050. Medicaid is a huge line item in state budgets, and increased Medicaid spending can crowd out other priorities at the state level, such as education and economic development.

For many individuals, the alternative to spending down into poverty is to increase their reliance on family caregivers. This strain does not show up in state or federal budget tables, but does impact the caregiver — depleting personal financial resources, interfering with employment, and exacting an emotional and psychological toll. Creating a comprehensive strategy to support family caregivers could help alleviate the burden felt on all sides — both stabilizing the increasing enrollment in Medicaid, and ensuring that family caregivers and those they care for are able to lead healthy and productive lives.

The Impact of CARE

At both the state and federal level, we are beginning to see encouraging signs that caregiving is becoming more central to post-Affordable Care Act health policymaking in the U.S. With the recent passage of the CARE (Caregiver Advise, Record, Enable) Act in Pennsylvania, Michigan, and Virginia, 25 states now require providers to identify and train caregivers during the hospital discharge planning process.

A recently proposed change to the Medicare conditions of participation for hospitals would require that nearly all caregivers receive specific discharge instructions, such as a list of all medications and warning signs to watch out for relevant to the patient’s condition. Under the proposed discharge planning rule, hospitals must consider the availability of family caregivers, their capacity to provide care, and community supports available to the patient. Ensuring that a family caregiver is well-informed and trained to provide appropriate post-discharge care can help avoid re-hospitalizations as well as prevent a decline in the health and functional status of the patient.

Last year, the National Academy of Medicine formed a committee of the nation’s leading experts to conduct a consensus study and make recommendations for public and private sector policies to support family caregivers. The release of this evidence-based study should be an important step forward in accelerating caregiver policy and practice development. Much like we have begun to do with our acute care system, a comprehensive, all-hands-on deck local, state, and federal strategy is needed to incorporate caregivers into the U.S. health system.

Policy Options Going Forward

Our recent report, Addressing the Needs of Caregivers at Risk: The Policy Landscape, covers three key areas:

Alleviating Financial Hardships

Several states offer tax benefits to family caregivers, to compensate for spending on services such as home modifications. However, these tax credits are small, limited in scope, and many individuals are unaware of their existence. The federal Dependent Care Tax Credit helps families with their child care needs, but its application to adult children caring for aging parents is severely limited. One potential approach to alleviating the financial hardship faced by family caregivers is to allow them to claim Social Security benefits in exchange for the time they spend providing care to loved ones.

Promoting Flexible Employment

The Family and Medical Leave Act (FMLA) allows qualified workers to claim up to 12 weeks of unpaid leave to care for a sick family member. The generosity of this benefit varies by state, with a few states offering paid rather than unpaid leave. Existing research shows that the impact of family and medical leave is positive, and in most cases, does not result in any negative effect on the profitability of a business.

Providing Services and Supports

The National Family Caregiver Support Program and Lifespan Respite Care Act provide funding to states to meet family caregiver needs by increasing the availability of respite care, providing resources for education and training, and offering supplemental services such as support groups, home modifications, and supplies. However, these programs are significantly underfunded. Many Medicaid home and community-based service (HCBS) waivers contain a “self-” or “participant-directed” component which allows the waiver recipient to select and pay their own caregivers, including family caregivers. The ability of Medicaid participants to hire and pay a family caregiver using Medicaid funds varies from state to state.

Early caregiver research indicates that systematically incorporating family caregivers into the U.S health system, for example, into discharge planning, could improve the psychological and physical health outcomes of patients, while reducing readmissions and total health expenditures (Rodakowski, et al., Integrating Caregivers of Older Adult Patients into Discharge Planning: A Systematic Review, in press).

The time has come for practitioners, providers, insurers, employers, and policymakers to consider this emerging body of evidence and develop strategies that fully embrace the critical role caregivers can and will play in our health care system.

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Embracing The Role Of Family Caregivers In The U.S. Health System

A better way to die? California’s end-of-life law launches June 9

Elizabeth Wallner vividly remembers the moment when she knew there had to be a better way to die.

Diagnosed with stage IV colon cancer, Wallner was in the midst of brutal chemotherapy that made her violently sick to her stomach. As she was retching into the toilet, her son, then 16, sat on the bathroom floor, helpless to ease her pain.

“I just remember the look of absolute anguish on his face,” recalled Wallner, a single mom. “I knew then that I would never, ever put him through that again. That moment is seared into my mind.”

When her time comes, Wallner, a 52-year-old education consultant who also cares for her aging parents, wants to spare her family any more agonizing memories and instead take a lethal prescription, prescribed by her doctor.

Starting June 9, that option will be available for the first time in California.

The legislation, signed by Gov. Jerry Brown last October after years of contentious battles over end-of-life options, marks a new era for California patients and physicians. Under a strict set of protocols, terminally ill patients can request a prescription drug to end their lives early, similar to existing practices in Oregon, Vermont and Washington.

For patients such as Wallner, California’s aid-in-dying prescription provides “a sense of peace that I will have a small measure of control in how my life ends.”

For physicians, it’s uncharted territory, applauded by some, unwanted by others. Ahead of next month’s implementation, health care providers are scrambling to train and advise physicians, pharmacists and others in how to handle patient requests.

There’s no telling how many Californians might opt for a lethal prescription. It could be in the hundreds.

“We can’t say with any kind of certainty what the number is going to be, but I don’t think it would be outrageous to say there could be 1,000 people in California who would be getting a prescription in the next year,” said Matt Whitaker, California director of Compassion & Choices, a Denver-based nonprofit that advocates for end-of-life planning, including hospice and palliative care.

Whitaker, who also works with Oregon’s 18-year-old program, said his office has been getting numerous calls from California patients and health care providers with questions about how to implement the new law.

“There are going to be tens of thousands of conversations going around California, as people are talking with their doctors about this new option,” he said.

In all cases, the end-of-life option is voluntary for doctors and individuals. (Continue Reading)

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A better way to die? California’s end-of-life law launches June 9