But what if we were to look at them differently? Despite understandable fear and denial, we may have very good reasons to want to learn more about death and dying. Thinking about and experiencing mortality–our own and that of others–can make us our lives richer, deeper and more valuable to us. Mortality in truth is the intensification of life.
This September, check out the first Melbourne edition of the Festival of Death and Dying. There will be over 20 participatory workshops, performances, talks and ceremonies on different aspects of death and dying over two days. In addition to talks and discussions, you will have experiences, which do justice to the full spectrum of what is at stake in mortality.
Phyllis is the author of the book, Choosing to Die. The book is a personal story about her journey with her late husband Alan and his choice to die by Voluntarily Stopping Eating & Drinking (VSED).
The reason Alan chose to do this was he had been diagnosed with Alzheimer’s and he wanted to end his life as conscious and organically as possible and to reduce his suffering. The Death Hangout hosts talk with Phyllis about the process, how it impacted Alan and her, and how it has changed how she lives now.
His family filed a federal lawsuit based on the following conduct at the hospital. Dr. Sherry Melton, a medical supervisor at UAB Hospital, changed Cummings's code status to Do Not Resuscitate without authorization from Gaines or any other family member and without notifying Gaines and Cummings's family of the decision.
Plaintiffs allege that Dr. Melton relied upon statements from the St. Clair warden to change Cummings's code status to DNR even though Gaines and several other family members were at the hospital. Plaintiffs further allege that “Warden Davenport authorized UAB medical personnel to stop giving Cummings medication and to disconnect the life support machine.” Plaintiffs allege that contrary to Gaines's wishes, and “[b]ased on [the] directive from Warden Davenport, Cummings was taken off of life support....” Cummings passed away just hours after UAB medical personnel removed his life support.
Finding that the warden lacked any authority under Alabama law to make those treatment decisions, the court denied the warden's motion to dismiss the Estate's § 1983 claim based on Warden Davenport's alleged deliberate indifference to Cummings's serious medical need in violation of the Eighth Amendment.
From the Trenches: A Prescription for Change
The Affordable Care Act was a massive piece of legislation. The complexities and moving parts are best understood by people who have very closely followed or implemented the law. I generally think of the ACA as three things:
1. Reform of the private insurance market with the goal of providing greater access to insurance coverage;
2. Changes to Medicare, such as closing the prescription drug donut hole; and
3. Changes to Medicaid.
|Mike Oxford, Executive Director for Policy at the Topeka Independent Living Resource Center and a member of the national chapter of ADAPT, was one of many who protested against the Senate bill to repeal the Affordable Care Act.|
Community Services Optional?
The Medicaid issue that has drawn the most attention is the matter of expanding access, appropriately called “Medicaid expansion.” But the law contains other Medicaid provisions as well. It provides incentives for states to continue to “re-balance” their systems of providing long-term care. “Re-balance” is often mentioned in quotation marks because states were never in balance. Nonetheless, through the ACA, states were provided additional federal matching funds if they would transfer more long-term care to community services and away from institutions, such as nursing homes.
That is the crux of the protest. People with disabilities and older adults do not want to return to the days of being sent to nursing homes as the only way to receive long-term care. The right to live in the community is worth a fight, and even arrest. Under federal law, when a person needs long-term care paid for by Medicaid, federal law guarantees access to a nursing home. Both the House and Senate ACA repeal legislation would reform Medicaid by converting it to a block grant program. States would ultimately manage the entire cost of Medicaid and would come under increasing financial pressure to eliminate optional services. Community services are optional. As are some of the categories of people who receive Medicaid for nursing home care. The end-result of eliminating services and/or categories of people would drastically reshape provision of long-term care.
Voluntary Program Not Viable
We need a public debate about long-term care reform. The ACA was many things but long-term care reform is not among them. Not really. Not as the law has been implemented. This I know. I was squarely in the middle of the sole provision of the ACA that addressed long-term care. That part of the law – Title VIII known as the Community Living Assistance Services and Supports Act (CLASS) – didn’t work. It wasn’t implemented and was eventually repealed.
CLASS created a limited-benefit long-term care insurance program. Advocates for older adults and people with disabilities fought very hard to have CLASS included in the ACA. They had a large and active coalition comprised of individuals and organizations. The principle that unified the spectrum of aging and disability advocates was the goal of providing long-term care in community.
The program, as designed, would have allowed individuals to purchase modest long-term care insurance coverage, administered by the federal government. The benefits would not have been sufficient to cover all long-term care costs, but it would have provided modest financial assistance to help people remain in community as they age and/or live with disability. As designed, it had an insurance benefit equivalent to about one-third of private long-term care insurance.
It didn’t work because it was voluntary. The people for whom the program was designed would have been interested in enrolling. People who currently need long-term care or think they will need it are more likely to purchase limited-benefit coverage. Even with the five-year waiting period required by law, the program would have suffered severe adverse selection. Actuarially the program was not viable.
Worst Day of My Career
Part of the controversy of the ACA is the matter of mandating participation. Only if everyone participates will the risk be spread sufficiently to support affordable premiums. For the private market the ACA mandated enrollment. For CLASS it was voluntary. In this fundamental way, the federal law took opposite approaches to health insurance coverage and long-term care coverage. Because the CLASS program could not be solvent, the Obama administration notified Congress it would not implement that portion of the ACA. In response, the House Energy & Commerce Committee held a public hearing. A federal official had to appear before the committee to explain why the program wouldn’t work and why the administration was not moving forward. That official was me. I spent 18 months serving as the administrator of the CLASS program.
The most difficult thing I have had to do in my career is recommend we not implement the long-term care program that would have helped tens of thousands of people who need long-term assistance and support. My anguish in breaking this news to the stakeholders paled in comparison to their dashed hopes of federal support for this much-needed and hard-fought program. In the wake of our decision to halt implementation, Congress repealed the law.
Time to Start Over
It is time to start over. For stakeholders who focus on long-term care, myself included, the ACA was insufficient. It did not tackle the thorny issues that underlie how we pay for and deliver support to people who need assistance with basic functions such as eating, bathing, dressing, toileting, transferring and maintaining continence. The so-called activities of daily living. These are the elements of long-term care. Most of us will face one or more of these challenges in the future. When we need that type of help, each of us will face the cost. This type of assistance is not covered by Medicare. This type of assistance can be provided either at home or in a congregate setting. This type of assistance is exorbitant. For these multiple reasons, Medicaid is the single largest payer for long-term care. And Medicaid block grants are a threat.
The entitlement programs in this country are a tremendous drain on federal and state budgets. Financial and political pressures will continue to thrust us into the maelstrom of reform. As we tackle changes in the Medicaid program, it is essential we begin by looking at the people it serves. The highest costs in the program are in long-term care. The people driving those costs are older people and people with disabilities. The very people being arrested this past month. I know firsthand these vocal advocates welcome the opportunity to talk about reform. But the conversation they seek is not primarily about Medicaid expansion. They are demanding we confront long-term care.
They are right. In the national campaign to either repair or replace the ACA, it is fundamentally unfair to make sweeping changes to Medicaid long-term care policy without public debate. Let’s give long-term care the forum it deserves. Changing long-term care financing will require laser-like focus on that topic alone. It cannot be adequately reformed by polarized politics reaching for other parts of the law. Long-term care reform is needed. By itself. Alone. Stripped of the distraction of the rest of the law.
Until we decouple long-term care financing from ACA reform we will be under constant threat. Not from the activists willing to lay their bodies on the line. But from the threat of losing the program we may need as our bodies themselves fail. The people who understand this most are those people – my friends – in wheelchairs you are watching on the news.
Kathy Greenlee is the Vice President for Aging and Health Policy at the Center for Practical Bioethics. She previously served as the U.S. Assistant Secretary for Aging and Administrator of the Administration for Community Living from 2009 to 2016.
As the price of health care and uncertainty about health insurance coverage increases, employers are taking more of an interest in their employees’ health. Indeed, this is not a new trend as the United States health insurance system has been employment-based since its creation. However, this trend may seem more justifiable when the federal government also takes an interest in employees’ health. From a public health perspective, monitoring a society’s health is very important but it must be balanced against the individual’s privacy interest as well as the harms and benefits of that monitoring. There is also the issue of who/what is the most appropriate entity to be doing the monitoring.
On June 27, 2017, the United States Department of Labor announced it will officially be monitoring use of opioid prescriptions by workers under the Federal Employees’ Compensation Act, which is the law surrounding the worker’s compensation system. The announcement expressed a safety concern based on overdoses and addiction of opioids in the midst of our current opioid crisis.
When an employee files a worker’s compensation claim, the employer must be notified and the employer has access to the health records included in that claim. The employer’s access to health records is limited to whatever is included in the claim and is justified based on the premise that the employer has an interest in the worker’s compensation claim. However, this new monitoring system means that an employer will now have access to its employees’ opioid prescription history, as this is information the U.S. Department of Labor will be monitoring as part of the worker’s compensation process.
This raises ethical concerns about invasion of an employee’s privacy for the benefit of combating the opioid crisis. Yes, we are in a nationally recognized crisis when it comes to the amount of opioid prescriptions and the number of deaths caused by overdoses, but is it truly appropriate for the U.S. Department of Labor to be the ones monitoring and questioning the practice of medicine? This announcement goes on further to state the following requirements to take effect by August 2017:
This policy will be administered in two phases, the first of which addresses FECA claims with newly prescribed opioid use (i.e. claims where an opioid has not been prescribed within the past 180 days, if ever). This policy for newly prescribed opioid use will be implemented in August of 2017. After an initial 60 day period of opioid medication, if an injured worker still needs opioid medication, the treating physician must complete a Certification/Letter of Medical Necessity (LMN) form in order for OWCP DFEC to authorize any additional opioid medication. All subsequent prescriptions will require that an LMN be received and reviewed by claims staff before opioid medication is authorized and dispensed.
Please be aware that as part of our new policy to address the safety considerations noted above, authorizations for opioid drug prescriptions will be limited to a maximum of 60 days, with initial fills and refills to be issued in no more than 30-day supplies (however physicians are encouraged to prescribe the shortest duration of opioid medication that will provide appropriate pain relief). Providers should utilize "partial fills" for schedule II and schedule III opioids. Please note that no more than two opioids may be authorized at any given time, and concurrent benzodiazepine prescriptions should be avoided to the extent possible.
This part of the announcement sounds like the practice of medicine or guidelines a health agency would issue, in that it is stating what a physician can and can not prescribe. This medical advice is coming from a federal agency, not a physician. It is also a federal agency that focuses on employment issues, not health. It is limiting the amount of opioids that can be prescribed and added administrative barriers for prescription. Controlled substances already have restrictions but these restrictions come from agencies such as the FDA or state agencies that specialized in issues surrounding drugs. The U.S. Department of Labor is looking at this health issue from a perspective that may not be ethically appropriate in terms of patient care, i.e. focusing too much on the cost.
As for the privacy concern, employers already get access to health information through other means besides worker compensation process. For example, some employers require health screens, especially if the potential employee works in health care. There has also been an increase in employer-sponsored wellness programs, which involve the disclosure of one’s weight and heart health. The concern is when the employer uses that information for unethical purposes. Society has already seen the trend of employers choosing not to hire smokers based on their health risk and cost. In 2013, the New England Journal of Medicine reported that 21 states did not have prohibitions against employers from having such restrictions. This article addressed some of the mixed messages a restrictive stance sends to the public when it is a health care institution that has such restrictions.
But when does health monitoring go too far and is it ethically appropriate for one’s employer to have access to this information? Consider the stigma associated with drug abuse in this case. The more pressing question though is whether it is appropriate for the U.S. Department of Labor to be acting in the role of the physician or replacing other agencies that specialize in drugs.
by Craig Klugman, Ph.D.
In the film Gattaca, a couple desiring to have a child visits their neighborhood geneticist:
by Jeremy R. Garrett, Brian S. Carter & John D. Lantos
This editorial is made available on bioethics.net. The editorial along with the target article and open peer commentary is available via tandfonline.com.
Neonatal intensive care is one of the most successful medical innovations of the last half century. Every year, in the United States alone, nearly 500,000 babies are born prematurely. Before neonatal intensive care, most of those babies died, and those who survived often suffered significant life-limiting impairments. Today, most preemies survive without impairments.
In spite of this success, neonatal intensive care unit (NICU) care has always been viewed as ethically problematic.…