"I have spent my life trying to live big and make a difference," Stephens said. "I believe my life is my message: A life with Down syndrome is a life worth living."
The 38-year-old has spent much of the last six weeks quarantined with his parents, watching movies and focusing on "home fun," he said. "My family and I are being very careful."
Stephens hasn't traveled more than two miles from his home in Fairfax, Virginia, since the beginning of the pandemic. He's immune compromised and isn't taking any chances.
He's worried about recent news around triage guidelines for those with disabilities should health care resources become scarce.
"I have heard that some hospitals have plans that would put me at the back of the line," he said.
Not all triage guidelines are created equal
In medical systems around the world overwhelmed by Covid-19, where overburdened hospitals have to choose who lives and who dies, disability advocates worry their lives won't count.
Contemplating the actual value of a life during a pandemic may be abhorrent to some people, but hospitals with more patients than ventilators have to identify which patients get priority.
One system for patient prioritization was developed by Dr. Douglas White, a professor of critical care medicine at the University of Pittsburgh.
"These are inevitably tragic choices with only bad options," White said. "But the only thing worse than developing a clear allocation framework is not developing one, because then decisions made during a crisis will be biased and arbitrary."
When looking at the number of life years a patient may have left, White's point system de-prioritizes patients with medical conditions associated with a life expectancy of less than one year, and then two to five years.
White's triage guidelines don't take into account an individual's disability status: Blindness or handicaps don't have a direct bearing on an individual's expected lifespan.
But in some cases, states use other criteria to determine whether patients might lose access to life-saving health care, including ventilators.
Disability advocates are staying vigilant
Advocacy groups have filed lawsuits against states they say have discriminatory guidelines.
Global Down Syndrome Foundation is part of a coalition of disability-related organizations monitoring state guidelines that could "blatantly discriminate" against certain disability groups, said Michelle Sie Whitten, Global's co-founder and CEO.
During the first wave of coronavirus infections, Whitten acknowledged it's been rare for the emergency triage guidelines to be used in real-life situations. But she said it was important to address any discriminatory procedures now, particularly if a predicted second wave of infections later this year decimates hospital resources again.
That's why The Arc and the Center for Public Representation have filed complaints against a number of states to the US Department of Health and Human Services' Office for Civil Rights.
Whitten said she wasn't surprised that bias was cropping up in these life-or-death situations.
Since time immemorial, disability rights has gotten "buried in times of relative prosperity," she said. But during the pandemic, the contrast between the able-bodied and disability community is in stark relief.
Some in the disability community fear discrimination
"All of these traits are grounded in biases and assumptions of what is 'good' and 'valuable,' leaving people who don't fit as deviant, unworthy and 'lazy,'" she continued.
Wong uses a wheelchair, receives breathing help from a ventilator and has two full-time family members who serve as her caregivers.
She said her needs don't stop her from pursuing a vivid and fulfilled life of purpose, and she sees her own situation as an opportunity to advocate for others facing similar challenges.
Policies that devalue the worth of those with disabilities also devalue the diversity of lived human experiences that can constitute a life well lived, she said.
Thinking of those with disabilities as a drain on health care resources "objectifies disabled people as mere 'consumers' of precious goods and services rather than whole beings who are valued and loved by their communities," Wong said.
She's keeping tabs on some of the public debate and legal battles about how the US prioritizes health resources for able-bodied people over people living with disabilities.
"It's scary how some guidelines make sweeping generalizations based on diagnosis," she said. "Each person with cancer, dementia or a developmental disability has unique needs and must be evaluated on an individual basis when it comes to treatment for Covid-19."
Bioethicists argue against separating patients by disability
Questions of rights and dignity emerge now as triage in hospitals and discrimination suits in courts. But at its root, the value of life is a question founded in thousands of years of philosophical debate.
"We have to do the most good that we can with the resources we have," said Chad Horne, an assistant professor of philosophy at Northwestern University.
In bioethics there are multiple broad ways of going about maximizing the good that health providers and society at large can achieve, he explained.
One way of accomplishing this is through a utilitarian framework, in which a hospital that tries to save the greatest number of patient lives and the highest number of patient life years, similar to White's "Model Hospital Policy."
While hospitals may prioritize ventilators or other resources to "the ones who are likely to recover," that doesn't mean that "your life isn't as worth living as someone without that impairment," Horne said.
Another way of thinking about it, he said, would be through a "prioritarian" framework, he said. From that point of view, rather than saving the greatest number of ultimate life years, providers could seek to prioritize their resources to where there's the greatest amount of need.
Based on those values assumptions, in a triage situation, ventilators would be prioritized for the elderly and the frail, rather than the young and the healthy.
Hospital guidelines are driven by a society's deeper values
In the fog of war against coronavirus, philosophers say our North Star is the innate value of each human life.
Though in crisis situations it's hard to make perfect outcomes, there were ways in which hospitals could help as many people as they could.
"We should never have to make these kinds of decisions between patients," he said. But he cautioned that it's wrong to think of this potential health rationing scenario as "death panels saying that Grandma has to die."
"I think in general we could defend the idea that prognosis matters," Bognar said. "So those patients get the treatment who will live the longest."
Outside of evaluating a patient's prognosis, he argued that it wouldn't be ethically permissible to extend the idea of prognosis any further than life or death.
For instance, the category comprised of individuals with disabilities might include those lacking eyesight or people using wheelchairs to get around. But in many cases, physical or intellectual differences don't have any bearing on life expectancy, and can't therefore be used to decide who would get a ventilator first in a hospital overrun with Covid-19 patients.
Beyond that, Bognar noted that bioethicists don't consider it valid to make determinations that a life lived in poverty or in suffering is any less worth saving than one lived in less trying circumstances. A human life is a human life.
"You don't want to make quality of life judgments about person X having a better life than person Y," he said.
That's been the message that Wong has been pushing for years through her work running the Disability Visibility Project, helping to amplify the voices of those with disabilities so that those human experiences aren't erased especially in periods of heightened risk like our present moment.
"No one should feel ashamed for needing help or feeling vulnerable. Weakness is not a moral deficit," Wong said. "Everyone is interdependent with one another, and we all have the power to support and care for each other."
CNN's Majlie de Puy Kamp, Curt Devine and Drew Griffin contributed to this story.
See the original post:
How hospitals make tough ethical calls about which lives to save during a pandemic - CNN
- How good is fish for your diet? - November 8th, 2009 [November 8th, 2009]
- What foods have both fiber and protein? - November 8th, 2009 [November 8th, 2009]
- Is There Evidence That Acupuncture Works? - November 8th, 2009 [November 8th, 2009]
- What are some good fiber foods? - November 8th, 2009 [November 8th, 2009]
- Can Green Tea fight HIV infection? - November 8th, 2009 [November 8th, 2009]
- Quality of GNC Supplements - November 8th, 2009 [November 8th, 2009]
- The Gene Smart Diet - November 8th, 2009 [November 8th, 2009]
- Tips for eating in a vegetarian lifestyle - November 8th, 2009 [November 8th, 2009]
- Regarding the Starting of a new diet regimen - November 8th, 2009 [November 8th, 2009]
- Thoughts on Dropping Weight - November 8th, 2009 [November 8th, 2009]
- What do doctors think about vitamin E supplements? - November 8th, 2009 [November 8th, 2009]
- What herbs or supplements are commonly used for depression? - November 8th, 2009 [November 8th, 2009]
- Is there a safe way to lose a lot of weight? - November 8th, 2009 [November 8th, 2009]
- Diets that promise you will lose weight - November 8th, 2009 [November 8th, 2009]
- Are Fish Toxins Linked to Diabetes? - November 8th, 2009 [November 8th, 2009]
- Can Plastic Surgery Help Migraines? - November 8th, 2009 [November 8th, 2009]
- Weight Loss Surgery Eradicates Diabetes Symptoms - November 8th, 2009 [November 8th, 2009]
- Found: A Gene That Controls Fat Cells - November 8th, 2009 [November 8th, 2009]
- Sugars and Starches, what's the difference? - November 8th, 2009 [November 8th, 2009]
- Improving your health with a serving of nuts? - November 8th, 2009 [November 8th, 2009]
- Is Your Diet Causing You To Be Depressed? - December 13th, 2009 [December 13th, 2009]
- Placebo Effect: Magnetic Bracelet Therapy - December 13th, 2009 [December 13th, 2009]
- Does serotonin promote sleep? - December 13th, 2009 [December 13th, 2009]
- Decreased energy levels - Overeating, Sleep, Nutrition - February 1st, 2010 [February 1st, 2010]
- When will the body begin to cannibalize muscle tissue? - February 7th, 2010 [February 7th, 2010]
- Foods that are high in antioxidants - February 7th, 2010 [February 7th, 2010]
- Editorial: Reduce health care costs by cutting administrative overhead - April 1st, 2012 [April 1st, 2012]
- Health Care Winners: Centene, Onyxx - April 25th, 2012 [April 25th, 2012]
- Dan Morain: Nurses union puts politics ahead of health - April 25th, 2012 [April 25th, 2012]
- What's next if Obamacare falls? - April 25th, 2012 [April 25th, 2012]
- Global Managed Health Care Services Industry - April 25th, 2012 [April 25th, 2012]
- Immigration Fight Echoes Health-Care Case at High Court - April 25th, 2012 [April 25th, 2012]
- Medical Centers Lead Workplace Wellness Effort - April 25th, 2012 [April 25th, 2012]
- The next health care overhaul? Look to employers - April 25th, 2012 [April 25th, 2012]
- Capital BlueCross Hosts Community Health Care Forums Focused on Managing Costs While Maintaining Quality - April 25th, 2012 [April 25th, 2012]
- County committee to look at area health care - April 25th, 2012 [April 25th, 2012]
- President Obama Calls on Students to Tell Congress: #DontDoubleMyRate - Video - April 25th, 2012 [April 25th, 2012]
- Sen. Coburn: Competition in Health Care to Allocate Resources - Video - April 25th, 2012 [April 25th, 2012]
- Jesse Kelly health care - Video - April 25th, 2012 [April 25th, 2012]
- PHC Vision Statement (short version) - Video - April 30th, 2012 [April 30th, 2012]
- The Bioeconomy Blueprint Panel - Video - April 30th, 2012 [April 30th, 2012]
- Providence Health Care's Vision Statement - Video - April 30th, 2012 [April 30th, 2012]
- Department of Health and Human Services: Minority Health Blogger Townhall - Video - April 30th, 2012 [April 30th, 2012]
- Health care worker accused of stealing identities of brain i - Video - April 30th, 2012 [April 30th, 2012]
- Health Care Reform, Part 1 of 3 | KYVE Insiders Roundtable - Video - April 30th, 2012 [April 30th, 2012]
- Health Care Reform: The ACA and Beyond - Video - April 30th, 2012 [April 30th, 2012]
- Is Broccoli Like Health Insurance? - Video - April 30th, 2012 [April 30th, 2012]
- Did Obama make a mistake on health care? - Video - April 30th, 2012 [April 30th, 2012]
- How Democrats Lie About Health Care - Video - April 30th, 2012 [April 30th, 2012]
- Toobin on Health Care: This was a "judicial hissy-fit" - Video - April 30th, 2012 [April 30th, 2012]
- President Obama says health care law will stand - Video - April 30th, 2012 [April 30th, 2012]
- Obama Defends Health Care Law From 'Judicial Activism' - Video - April 30th, 2012 [April 30th, 2012]
- Obama Healthcare Individual Mandate - Video - April 30th, 2012 [April 30th, 2012]
- President Obama attacks Supreme Court on health care - Video - April 30th, 2012 [April 30th, 2012]
- Raw Audio: High Court Dissects Health Care Act - Video - April 30th, 2012 [April 30th, 2012]
- Health care on trial - Video - April 30th, 2012 [April 30th, 2012]
- Final Day of Health Care Law Arguments Before Supreme Court - Video - April 30th, 2012 [April 30th, 2012]
- Feds to put up $1.9B for Oregon health overhaul - May 4th, 2012 [May 4th, 2012]
- Scuttling health care act will freeze Medicare, White House warns - May 4th, 2012 [May 4th, 2012]
- U.S. Health Care Spending High, But Quality Lags: Report - May 4th, 2012 [May 4th, 2012]
- Yes, the Health-Care Mandate Is About Liberty - May 4th, 2012 [May 4th, 2012]
- Health center gets $1M federal grant - May 4th, 2012 [May 4th, 2012]
- Health-care reform panel considers exchange options for Va. - May 4th, 2012 [May 4th, 2012]
- Hmong health care gap focus of Healthy House dinner - May 4th, 2012 [May 4th, 2012]
- Walsh-led health bill to be unveiled - May 4th, 2012 [May 4th, 2012]
- Ontario health system confusing for ailing seniors, study finds - May 4th, 2012 [May 4th, 2012]
- 'Health Care Deserts' More Common in Black Neighborhoods - May 5th, 2012 [May 5th, 2012]
- With federal money, Oregon kicks health care reform into high gear - May 5th, 2012 [May 5th, 2012]
- Nurse practitioners tackling more 'doctor' tasks - May 5th, 2012 [May 5th, 2012]
- Konza Prairie Health Center Receives $4.5 Million Grant - May 5th, 2012 [May 5th, 2012]
- Alberta wages hurting Sask. health care - May 5th, 2012 [May 5th, 2012]
- House releases plan to cut growth of Massachusetts health spending in half - May 5th, 2012 [May 5th, 2012]
- Mass. House Will Unveil Bill Seeking To Rein In Health Costs - May 5th, 2012 [May 5th, 2012]
- President Obama Welcomes the Kentucky Wildcats - Video - May 5th, 2012 [May 5th, 2012]
- President Obama Speaks on College Affordability - Video - May 5th, 2012 [May 5th, 2012]
- My First Job: Gene Sperling - Video - May 5th, 2012 [May 5th, 2012]
- Health-care costs worry near-retirees - May 7th, 2012 [May 7th, 2012]
- Massachusetts Institutes Health-Care Price Controls. Is America Next? - May 7th, 2012 [May 7th, 2012]
- Massachusetts Moves Toward Health-Care Price Controls. Is America Next? - May 7th, 2012 [May 7th, 2012]
- GOP plan boosts Pentagon, cuts social programs - May 7th, 2012 [May 7th, 2012]