Disability Discrimination
Diane Coleman and Stephen Drake, 07/11/2012

Disability Discrimination

(Medicine) Permanent link

A powerful essay in the July-August Hastings Center Report describes a chilling encounter between a physician and a seriously ill disabled patient.  The author, William J. Peace, who has been paralyzed from the waist down since 1978, was hospitalized two years ago with a large, grossly infected stage four wound. While he had no illusions about the gravity of his condition – he would be bedbound for at least six months, dependent on others, and saddled with staggering unreimbursed medical bills – he was unprepared for what a hospital physician said to him.  “He informed me I had the right to forego any medication, including the lifesaving antibiotics,” Peace writes. “Although not explicitly stated, the message was loud and clear. I can help you die peacefully.”

Peace concludes that his experience was not an isolated case, but instead was evidence of pervasive discrimination against people with disabilities. “Many people – the physician I met that fateful night included – assume disability is a fate worse than death,” he writes.

Was Peace’s experience unique? Is his assessment accurate? We invited commentaries from leaders in disability rights scholarship and advocacy and a physician recognized for exemplary care of patients at the end of life. Commentaries will appear over the next week or so, with response from Peace. We welcome comments and additional posts from readers. Here is the first commentary, by Diane Coleman and Stephen Drake, of Not Dead Yet.


It's difficult for us to believe that Bill Peace's story would really surprise anyone entrenched in bioethics and “end of life” issues. Anyone paying close attention to various news stories and occasional journal articles would be pretty sure there are more stories – some arguably worse – just waiting to be told. For a story, of course, you need a survivor who is able and willing to tell it. And of course, the storyteller needs a venue – we owe Bill Peace and The Hastings Center our thanks for making those elements come together.

The most surprising thing about Bill Peace's article concerning his experience with the hospitalist is that it appeared in a bioethics journal at all. The second surprising aspect of his experience is that we're having a publicly accessible discussion about it. The many ways that medical professionals push disabled people toward death are absent from journals – or masked in jargon and euphemisms. Subjects like Bill Peace's story are certainly absent in venues in which bioethicists engage the public – as though there are discussions that the professional class would prefer we (the public) not be a part of. Recently, however, the wall of silence shows signs of cracking.

Three years ago an online series of articles about dying featured an entry by a young quadriplegic woman who did not die. At age 19, Terrie Lincoln was in a coma from an automobile accident when doctors repeatedly urged her parents to withdraw life support and spare her a future life with serious disability. When she awoke they approached her with the promise that they could make her dying comfortable. She and her family resisted and over a decade later she is now raising her young daughter and living happily using a motorized wheelchair and receiving daily personal care services.

That's only one case but there are indications that it represents a pattern. Prominent neurologist Dr. Joseph Fins, who is also a Hastings Center board member and Fellow, has made some major statements that should have gotten a response from the bioethics community but have not. In a December 2011 New York Times Magazine interview, Dr. Fins stated that the families of people with new brain injuries were too often wrongly urged to withdraw life-support leading to the patient's death before enough time had elapsed to enable a reasonable prognosis about their future recovery. In a March 2012 article in Virtual Mentor, the American Medical Association’s journal of ethics, Dr. Fins stated that he felt he needed to resign from the board of an organ procurement organization because of its aggressive and “predatory” approaches to families of individuals in intensive care units. Families whose relatives survived reported that they had been pressured to withdraw life support and make their relative’s organs available for transplant.

The National Disability Rights Network, an association of organizations charged with safeguarding the rights of disabled people, issued a report in May condemning decisions to withhold life-sustaining treatment from people with disabilities who were neither terminally ill nor diagnosed in a permanent vegetative state, pointing out that these practices violate constitutional and civil rights. One case of this nature occurred in Pennsylvania beginning in 2007 when the parents of a man with developmental disabilities went to court seeking to withdraw life support when he temporarily needed a ventilator due to aspiration pneumonia. When the court denied the parents this option and the man survived and returned to the group home in which he resided, his parents pursued an appeal to the state Supreme Court in case the opportunity to withhold treatment should arise again. Fortunately the state Supreme Court denied the appeal in a 2010 ruling. Not even Art Caplan, who writes columns on bioethics, wrote about this major legal decision in what was then his own backyard.

So against this backdrop, the unusual thing about Bill Peace's story is that it is being discussed in a bioethics journal.

Regarding the story itself one can envision a best-case scenario in which the doctor’s outrageous words and behavior could be explained as innocent and well-meaning. His laundry list of horrors facing Bill, which go far beyond the medical prognosis to include extreme financial and lifestyle losses, could have been informed by actual experiences of his patients. The doctor might also have been aware of the palliative care information law passed in New York, where Bill was treated, in 2010. Though the provisions did not go into effect until 2011, they were on the horizon in 2010 and require doctors to disclose end-of-life care options under circumstances that could reasonably include the kind of life-threatening condition that Bill faced. Perhaps the doctor came to Bill in the middle of the night because for him it was simply the end of a long day at work, with other appointments finished and finally with time to have a more lengthy discussion of an important subject. Best case scenario.

Whatever motivated the doctor, it should be clear that the doctor's words were the last thing that Bill needed to hear at that point. The disability community opposes the type of palliative care information bill that forces doctors, with no discretion as to timing, to discuss so-called "end-of-life" options with people who have just been given a new diagnosis of a potentially terminal or severely disabling condition or are fighting for survival in the midst of a medical crisis with an uncertain outcome. Such laws invite the kinds of mistakes that this doctor made in speaking with Bill in the middle of the night and should be amended with language that allows flexibility in the timing of palliative care disclosures, requires an interdisciplinary team approach to the individual and family, and affirms the core value of providing emotional as well as physical support.

Diane Coleman is the president and CEO and Stephen Drake is a research analyst of Not Dead Yet, a national disability rights organization.

Posted by Susan Gilbert at 07/11/2012 10:01:48 AM | 

I'm a regular person, disabled by illness, who came here via a link from Not Dead Yet, a group that I support. My first observation relates to medical terminology, which Diane Coleman and Stephen Drake allude to, but in other context. I wonder if it's possible to have either a glossary of terms or some additional language, so lay people can understand. I had to figure out from context what "hospitlist" and "bloody 'debridement'" mean, for example.

I think it would be good to have some discussion of neglect of patients, as well. (I understand about jargon. My spouse is a biology lecturer in a college and I often accuse his field of having special terminology to make the field both exclusive and intellectual.)
Posted by: sanda.aronson@ymail.com ( Email | Visit ) at 7/12/2012 9:56 AM

Such phony reproduction evaluation websites, how could you anticipate to obtain the reality concerning the sellers!
Posted by: xiaonan021@gmail.com ( Email | Visit ) at 4/21/2014 2:27 AM

Diet meals for diet and weight loss encourages the actual eating involving not only the best food items though the proper amount involving calories per day. It can help people to learn to calculate just what calorie consumption can be maintain our own weight, free bodyweight, or perhaps boost pounds. It's very important that we understand exactly how the calorie consumption as well as our own caloric melt away make an effort to establish the body weight.
Posted by: eronenisme@gmail.com ( Email | Visit ) at 12/11/2014 6:32 PM

We all want to become healthy, there is no question about this. But wait, how do you attempt in fact residing cook with no quitting all the habits which you carry beloved?
Posted by: amyahlom@gmail.com ( Email | Visit ) at 12/12/2014 3:24 PM

In one in the first methods of training regarding house training which can go onto potty training. Dog crate training is the one other element in case there are issues with house training. From there it is on gnawing and damaging behaviour which results in puppy obedience training which could remedy a number of these troubles via optimistic training.
Posted by: jenn.tenner2@gmail.com ( Email | Visit ) at 1/6/2015 8:38 AM

You don't need to delay until a problem visits an individual before you decide to act upon for you to giving you better memory. When you're conscious of regarding that your brain operates in getting and also storing the knowledge that can from different solutions. It is possible to assess your own brain's capacity to shop info to what sort of computer features.
Posted by: eronenisme@gmail.com ( Email | Visit ) at 1/6/2015 5:21 PM

If you're contemplating changing your living for the far better, you will need to start as soon as possible. The actual faster you really begin, the greater potential for one to make the right modifications that may influence your health for that much better.
Posted by: eronenisme@gmail.com ( Email | Visit ) at 1/14/2015 8:22 AM

Discover a pal to have balanced along with. You can make jointly once in awhile and you will boast regarding your good results. Driving under the influence discouraged you may be there for each and every other. Fellas this is applicable to you at the same time.
Posted by: eronenisme@gmail.com ( Email | Visit ) at 1/22/2015 5:55 AM

You will find that quick, secure strolls will end up an everyday portion of your way of life. A lot of communities with regard to pension (as well as families) happen to be built with going for walks trails and also motorcycle pathways. Consistently the sunshine can make riding a bike a nice way of physical exercise all climates and seasons.
Posted by: janice.merkoward@gmail.com ( Email | Visit ) at 1/22/2015 4:55 PM

You have to be more productive -- move more. Even though your own shape won't allow you to workout vigorously at the very least get out of bed along with stroll or transfer your own arms or legs by some means.
Posted by: boni.experius@gmail.com ( Email | Visit ) at 1/24/2015 6:38 AM

Sometimes those who reduce control of their body weight, reduce control of other parts of their particular lifestyle, like their financial situation or perhaps associations.
Posted by: aryahlom@gmail.com ( Email | Visit ) at 1/27/2015 4:50 PM

Wholesome eaters understand that restricting meals are often unproductive. To get the best benefits, help make eating routine a priority in your lifetime.
Posted by: aryahlom@gmail.com ( Email | Visit ) at 1/27/2015 4:50 PM

People who desire to immediately be ok with them selves will start using their diet regime. The results of your the right diet are a improve for you and people surrounding you. You'll feel good, search good and even distribute in which positivity other folks.
Posted by: aryahlom@gmail.com ( Email | Visit ) at 1/27/2015 4:50 PM

Should you be in college so you continually ended up wanting to outwit the actual instructor you'd find out practically nothing more than you by now knew. The cup would certainly stay complete and your drink would get old. This kind of mug is the thoughts therefore just before I explain to you just what fine art genuinely signifies you need to 1st unfilled your brain of the things you think that you understand art.
Posted by: eronenisme@gmail.com ( Email | Visit ) at 2/13/2015 1:45 PM

Natural and organic products offer the skin together with exterior nutrition in which retains that hunting wholesome and also permits you to age softly. People who make use of healthy skin care goods are less focused on unnatural splendor improvements, while they feel that organic beauty is healthy beauty.
Posted by: janice.merkoward@gmail.com ( Email | Visit ) at 2/18/2015 4:30 PM

A lot of folks are saved to the internet every day hunting for a wholesome way to lose weight quick. Most of them tend to be let down on the way regarding these people don't get the marvelous wholesome technique for losing weight rapidly. The rest may not discover what that they located search for nonetheless they end up getting something which will in the end enable them to carry on how much decline search.
Posted by: jenn.tenner2@gmail.com ( Email | Visit ) at 3/27/2015 3:11 PM

Those addicting soda pops and also fast foods are probably the unhealthiest health possibilities feasible. In addition to the sugars and also salt many consist of in addition they give your body having countless unwanted calories from fat. For the best outcomes listed here are A couple of suggestions to make sure that your healthy eating meals eating habits continues to be to normal.
Posted by: eronenisme@gmail.com ( Email | Visit ) at 3/30/2015 3:15 PM

If you aren't 1 pertaining to going for walks and may also want a fitness center you could attempt as well as get out of bed earlier as well as check out the health club each day. This will likely offer you a great deal more power at work.
Posted by: eronenisme@gmail.com ( Email | Visit ) at 4/7/2015 6:17 AM

The standard of your life will certainly boost as you make a plan in the direction of reducing your tension. Pressure influences a lot of regions of lifestyle*jobs and health, and also partnerships.
Posted by: orkooper@gmail.com ( Email | Visit ) at 5/9/2015 5:39 AM

You may also be surprised to know that lots of the particular 'over the particular kitchen counter drug treatments a person
acquire on a regular basis, simply treat the outward symptoms and not the real ailment.
Posted by: orkooper@gmail.com ( Email | Visit ) at 5/13/2015 4:04 PM

Health care insurance charges and also strategies rely upon a lot of factors, in addition to your individual well being history, where you live, express insurance coverage regulations, your current gender, your actual age, and even your credit score!
Posted by: eronenisme@gmail.com ( Email | Visit ) at 5/24/2015 3:11 AM

On the other hand, health behavior similar to refraining coming from using tobacco or even consuming, and looking after an ordinary fat may meet the requirements your for health care insurance savings.
Posted by: eronenisme@gmail.com ( Email | Visit ) at 5/24/2015 3:11 AM

These types of savings can cut more than 20% from your standard cost. A few insurance companies may well allow these kind of reductions for applicants of any age, but some may cut these off of in a particular get older wedding ring such as 39 as well as Forty nine.
Posted by: eronenisme@gmail.com ( Email | Visit ) at 5/24/2015 3:11 AM

Excellent post.Thanks for sharing this message.Really,Your blog is not only instructive but useful too..!!

buy email leads
Posted by: jamalasjhar34@gmail.com ( Email | Visit ) at 5/25/2015 5:44 AM

When walking on a regular basis you are going to sleep far better, slim down and also improve muscles.
Posted by: jenn.tenner2@gmail.com ( Email | Visit ) at 6/5/2015 10:35 AM

The important benefactor associated with strolling is going to be existing a prolonged balanced lifestyle.
Posted by: jenn.tenner2@gmail.com ( Email | Visit ) at 6/5/2015 10:36 AM

You will discover your self planning to alter your routines similar to eating much better or perhaps to give up smoking. Strolling is definitely an enjoyable, calming way of getting exercise. Whether you're new to going for walks or even have to get healthy a regular program you can get dwelling healthful inside of several weeks.
Posted by: jenn.tenner2@gmail.com ( Email | Visit ) at 6/5/2015 10:36 AM

Roughly Thirty-three thousand dollars are invested in conditioning products annually. Amazing! 3 billion dollars dollars! Not really zillion...however Thousand! Which is shocking.
Posted by: orkooper@gmail.com ( Email | Visit ) at 6/10/2015 2:45 PM

The rights of persons with disabilities should not be administered discrimination. But anyway, people with disabilities are entitled to special treatment in order to get his life decently.
Posted by: milan30mei@gmail.com ( Email | Visit ) at 6/21/2015 7:51 PM

Most important, the public must be led to accept strong government interventions in their private lives..
Rexburg drafting services
Posted by: aarijali100@gmail.com ( Email | Visit ) at 6/23/2015 3:03 AM

He informed me I had the right to forego any medication, including the lifesaving antibiotics,” Peace writes. “Although not explicitly stated, the message was loud and clear. I can help you die peacefully.”
body slim herbal
Posted by: robinjack529@gmail.com ( Email | Visit ) at 6/24/2015 3:35 AM

If you are like many people, you are beginning to sit up right now along with believe a bit tougher regarding your general health along with health and fitness.
Posted by: oyahaloms@gmail.com ( Email | Visit ) at 7/1/2015 4:32 PM

It is no magic formula that will being overweight minute rates are going up -- whatever you have to accomplish can be browse around you together with you will notice just how grossly obese many of our inhabitants are becoming.
Posted by: oyahaloms@gmail.com ( Email | Visit ) at 7/1/2015 4:32 PM

If motion isn't come to help you put a stop to the trend, our health and wellbeing care cost is gonna escalate and all over the place individuals will end up being facing serious wellbeing implications which could virtually take their resides in peril.
Posted by: oyahaloms@gmail.com ( Email | Visit ) at 7/1/2015 4:33 PM

rweight minute rates are going up -- whatever you have to accomplish can be browse around you together with you will notice just how grossly obese m
batteries online
Posted by: robinjack10@gmail.com ( Email | Visit ) at 7/2/2015 2:51 AM

4 On the other hand, Simon and colleagues found that despite the fact that only 69% of adult oncology patients were explicitly told about rando
Posted by: robinjack10@gmail.com ( Email | Visit ) at 7/5/2015 6:04 AM

It could be used for mobile broadband, broadband services in rural areas, new wireless technologies, etc
text your ex back forum
Posted by: robinjack10@gmail.com ( Email | Visit ) at 7/6/2015 5:43 AM

Here is a set of Ten-Important Keys to making a pleased living; if you can get better at any one of them, you would be on the way to some lifetime of pleasure. However, merely considering the tips on a list will alter the way you look at the world -- and the way the world looks again to you.
Posted by: eronenisme@gmail.com ( Email | Visit ) at 7/6/2015 3:31 PM

can teach why the insurance mandate in the Affordable Care Act ought to make sense to us.

Low price Awesome blog comments service
Posted by: robinjack10@gmail.com ( Email | Visit ) at 7/7/2015 4:39 AM

Excellent post.Thanks for sharing this message.Really,Your blog is not only instructive but useful too..!!
blog comments seo
Posted by: lenovodell637@gmail.com ( Email | Visit ) at 7/8/2015 7:17 AM

I needed to much obliged in your time for this sublime read!! I decidedly getting a charge out of every tad bit of it and I have you bookmarked to look at new stuff you weblog post.auto loans calculator....

Posted by: jamalasjhar34@gmail.com ( Email | Visit ) at 7/14/2015 5:40 AM

well, this was a kind of new info for me. Thanks for sharing
Posted by: workts789@gmail.com ( Email | Visit ) at 7/19/2015 2:35 AM

specific subject here and the textual style genuinely isn't joined with all the content
contractors orange county
Posted by: robinjack10@gmail.com ( Email | Visit ) at 7/23/2015 5:39 AM

Instead, behave in ways where you can have the characteristics you need to experience in the romantic relationship together with your Precious. By way of example, in order to experience valued, carry out you are not selected work.
Posted by: orkooper@gmail.com ( Email | Visit ) at 7/27/2015 2:40 PM

Simply wanted to inform you that you have people like me who appreciate your work.
orlando water damage restoration
Posted by: robinjack10@gmail.com ( Email | Visit ) at 7/29/2015 6:46 AM

Should you be set to get a impressive technique that is not the same as precisely what each in addition will be teaching, click 77 Tips for Draw in and Keep Him or her Today. You don't want to miss this particular!
Posted by: boni.experius@gmail.com ( Email | Visit ) at 7/29/2015 2:06 PM

later life is sadly not unusual but with the right approach it need not be life limitin
assisted living westchester ny
Posted by: robinjack10@gmail.com ( Email | Visit ) at 7/30/2015 2:32 AM

This site has lots of advantage.I found many interesting things from this site. It helps me in many ways.Thanks for posting this again
100% High PR unique domains
Posted by: robinjack10@gmail.com ( Email | Visit ) at 7/30/2015 6:21 AM

it's possible to have either a glossary of terms or some additional language, so lay people can understand. I had to figure out from context what "hospitality" and "bloody 'abridgement'" mean, for example....

Fantasy Ball Blogger
Posted by: jamalasjhar34@gmail.com ( Email | Visit ) at 8/2/2015 7:02 AM

Definitely a great post. Hats off to you! The information that you have provided is very helpful
Penis Enlargement Bible Review
Posted by: robinjack10@gmail.com ( Email | Visit ) at 8/3/2015 7:58 AM

been seeking for info about this subject matter for ages and yours is the best I have discovered so fa
Penis Enlargement Bible
Posted by: robinjack10@gmail.com ( Email | Visit ) at 8/3/2015 8:03 AM

Deal with the idea featuring its complete opposite. The mind is only able to have one believed at the same time. Package the negative being a fighter combats! Provide it with the particular ol 1-2. Don't allow that rule a person. Were the property owner home gardeners individuals consciousness. No matter how serious the foundation in the negative, you are going to in the end achieve out.
Posted by: alex.yahaloms@gmail.com ( Email | Visit ) at 8/3/2015 3:56 PM

Always try to push things you need in your home. It is not only going to be cheaper, but it will be much more beneficial to your health and your family.

Posted by: jamalasjhar34@gmail.com ( Email | Visit ) at 8/5/2015 4:07 AM

It is one of the best wine openers in the world. You can very quickly open a bottle
sigaretta elettronica
Posted by: robinjack10@gmail.com ( Email | Visit ) at 8/6/2015 8:30 AM

Amazing insight you have on this, it's nice to find a website that details so much information about different artists.
reliable backlinks
Posted by: robinjack0@gmail.com ( Email | Visit ) at 8/9/2015 2:53 AM

while searching for some related information on blog search...Its a good post..keep posting and update the information.
the venus factor pdf
Posted by: robinjack10@gmail.com ( Email | Visit ) at 8/12/2015 7:41 AM

while searching for some related information on blog search...
buy instagram likes
Posted by: aarijali100@gmail.com ( Email | Visit ) at 8/17/2015 6:34 AM

Leave a comment
Name *
Email *