Terminally-ill patients face shortage of right-to-die drug amid controversy over capital punishment

A spat between a drug manufacturer and states that use the death penalty could soon be impinging upon Washington residents’ right to die”

 

I recently wrote a piece for Real Change on the unintended consequences of European pharmaceutical companies attempts to thwart their drugs’ use in executions in the United States. It is unsurprisingly tragic that as things stand the state’s right to kill trumps the individuals’ right to die.  Hopefully things will change soon?  It was also written about (with numerous factual inaccuracies) in the Willamette Week paper.

 

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Dying to give back to the earth

“Unsurprisingly, she wanted to die just as she had lived: green. So after a life of environmental stewardship, she was met with the daunting task of choosing how to most sustainably return her body to the earth.”

Dying to give back to the earth” is a piece about the environmental impact of the funeral industry and sustainable alternatives to the status quo. It is an article of mine published in Waging Nonviolence, an online “source for original news and analysis about struggles for justice and peace around the globe.” While I would like for you to read my blog, I would love for you to read Waging Nonviolence and discover even more in-depth articles from a variety of voices. So please head over there to read this (and many other) articles!

 

Radical Hat-Burning Nurses Unite!

The linked post was written by blogger/writer/inspiring professor-at(in my opinion)-a-disappointingly-conservative-nursing-school Josephine Ensign on her blog “Medical Margins.”  Josephine’s post touches on current manifestations of radical nursing (e.g. Rebellious Nursing! conference) and reflects on the progress (no more nursing hats!) and lack of progress (pretty much everything else) nurses have made over the past few decades. It is an excellent look at the history and future of what now appears to be a burgeoning movement! Below is the first paragraph, but go check out Josephine’s blog and read the entire post here… Radical Hat-Burning Nurses Unite!

“Radical nurses are back, or perhaps they never left and are just becoming more visible, more organized. The photo here is of my nurse’s cap-wearing trained seal mascot given to me by a friend in nursing school–who promptly dropped out of school because she was too radical for them.”

Let’s talk about death!

“Oh wow.”  – Steve Jobs’ last words.

Of the more than 70% of Americans who state they want to die at home, only 25% actually do. While the reasons for this are multicausal, the fact that a paltry 20% to 30%  of adults in the US have documented their end-of-life wishes in the form of a living will is contributing factor. Put simply, end-of-life conversations are not happening until it is too late, if at all. Consequently, family members are all too frequently forced to make treatment decisions for their loved ones with little insight into the person’s actual wishes.

New research published in JAMA Internal Medicine shows that we frequently error on the side of more treatment, beneficial or not. The study found that nearly 11% of ICU patients received treatments the medical team considered futile. Senior author Dr. Neil S. Wenger attributes this, in part, to a lack of communication. “There has to be far better communication between patients and doctors, families and doctors, patients and families. This ought to be a wake-up call that patients are at times receiving advanced medical treatment that is not benefiting them.” According to Dr. Wenger, patients and families are paying the price of the lack of communication. “It’s costing patients in terms of a prolonged death, and the families in terms of acting on inappropriate hope.”

Fortunately, there has been a surge in initiatives geared towards provoking these crucial conversations and breaking through our collective discomfort with death. Below are a few of my favorite initiatives and ways to get involved.

Let’s Have Dinner and Talk About Death

In a serendipitous conversation with two doctors on a train from Portland to Seattle, Michael Hebb was shocked to learn that while nearly 75% of people wish to die at home, only 25% do. The doctors affirmed Michael’s supposition that, “how we end our lives is the most important and costly conversation America is not having.” Inspired by this experience, Michael started the online multimedia project, “Let’s Have Dinner and Talk About Death” to help spur these conversations. The website allows the dinner host to choose 3 works on death to inspire conversation: one to read, one to watch, and one to listen. They range from a selection from Charolette’s Web, where Charlotte contemplates the cyclical nature of life with Wilbur, to a commencement speech given by Steve Jobs entitled “How to Live Before You Die”. After the 3 pieces are chosen they are sent via email along with an invitation to those attending the dinner.

That the conversations happen over a meal is unsurprising given Michael’s background as a restaurateur, though it confers other benefits as well. According to the website, “The dinner table is the most forgiving place for difficult conversation. The ritual of breaking bread creates warmth and connection, and puts us in touch with our humanity.” Go to deathoverdinner.org to learn more and host your own dinner.

My Gift of Grace

A project of the Action Mill, a group that “designs human-centered solutions for organizations focused on late life and end-of-life care,” My Gift of Grace is a card game designed to provoke thoughtful conversations about the practicalities of dying and our own values surrounding death. Cards feature questions about “end-of-life decision making, advance directives and other issues related to life, death, and dying.” It won the California Healthcare Foundation’s End of Life Challenge, which was designed to find creative solutions to entice more people to “complete advanced directives and document their end-of-life wishes.”

I had the opportunity to play a prototype of the game at the Rebellious Nursing Conference last September. Not only did it provide me with space to reflect on my own death, but it gave me an opportunity to learn from others. This allowed me to consider end-of-life alternatives I hadn’t previously and refine my own end-of-life plans and values.

My favorite part about the game is the alternative way to play where each player writes their answers directly on the cards, creating a permanent record of each players end-of-life ideals that can be referred to later by their loved ones. My Gift of Grace turns the tediously daunting task of creating an advanced directive into a fun, thought-provoking, and shared experience.

Death Cafés

Death Cafés seek to “increase awareness of death with a view to helping people make the most of their (finite) lives’”… all over tea and cake! What makes Death Cafés unique is that rather than a close group of friends or family gathering, it is often strangers who join together to build community and mull over matters of mortality.

As so much of public life revolve around commerce, I personally appreciate the (almost) explicitly anti-capitalist nature of the organization.  It is “on a not for profit basis,” has “no intention of leading people to any conclusion, product, or course of action,” and the website states there will be no association with or sponsorship from large private sector organizations within the death industry.

According to the website, there have been more than 415 Death Cafes in multiple continents with more than 3000 participants. Visit the website to find a Death Café near you.

Hand sanitizer and right-to-work legislation

Nurses love hand sanitizer.  No, really.  We use it to the point where our urine contains traceable amounts of alcohol metabolites.  We use it to the point where it causes false positives on breathalyzers.  We have even used it to the point where it has set both nurses and patients on fire (with the help of static electricity).

Given our prodigious use of hand sanitizer, it is unsurprising that it is one of the staples of health care swag.  So when I saw a bag of promotional materials at a Washington State Nurses’ Association (WSNA) meeting, I thought to myself, “Sweet! I hope they have hand sanitizer.”

During the meeting, the WSNA organizer acknowledged the elephant in the room.  “I know some believe that unionization diminishes the status of nursing as a profession.” Nurses have fought persistently for years to be viewed as professionals. The recent history of being treated disrespectfully (not to mention sexually harassed) by other health care workers (let’s be honest, it was mostly doctors) makes this an issue fraught with emotion. As a result of this history, anything perceived to diminish the status of nursing is viewed with concern. Hence, the hesitancy surrounding union representation. The WSNA organizer’s rebuttal to this apprehension was that WSNA isn’t just a trade union like SEIU; it is a professional organization that represents the profession and plays a large part in expanding the scope of practice for nurses.  Though I already viewed unions as an effective means of addressing workplace issues that impact patient safety, she made me feel that WSNA was an organization for nurses by nurses. After all, the organizer was also a nurse; she spoke our language (something SEIU somehow still hasn’t figured out is really important). And then we were given our swag… 

photo-21

Again, because we can’t get enough hand sanitizer, every nurse took a bottle of WSNA hand sanitizer as they left the meeting. I sprayed my hands (because why not?) and was assaulted with a smell that made my nose hairs curl.  It was something reminiscent of an alcoholic wearing way too much cheap perfume.  I turned the bottle around to read the ingredients label.  “Ethyl alcohol 62%, water, glycerin, fragrance.”  First of all, what kind of ingredient is “fragrance”?  Second, nurses are extremely conscious about being scent free.  Home health nurses make it a common practice to visit patients who smoke at the end of the day so as not to expose other patients to the smell.  For many of my cancer patients, the slightest odor can exacerbate nausea. Many hospitals have even begun to implement fragrance-free policies for these reasons.

So what does this say about WSNA?  One, it provides a tangible, symbolic example of the disconnect between the actions and rhetoric of the organization.  Sure, it may be the professional organization representing nurses.  But can they truly be the voice of nurses if they can’t even get the right type of hand sanitizer?  More importantly, will they ever be able to convince nurses’ who feel negatively towards unions to come onboard? As long as WSNA makes decisions that every practicing nurse finds ridiculous (in this case, giving way hand sanitizer no nurse can use in a clinical setting), the answer is no.

What does this mean? Currently, most hospitals are closed shop, meaning all nurses’ must join the union and pay dues.  If the disconnect between nurses and “their” organization is allowed to persist, what will happen if right-to-work (for poverty wages) legislation is passed in this state as it has been in 23 others?  Would the 45% of nurses who have no opinion or a negative opinion of unions’ impact on the profession continue to pay upward of $800 a year in dues?  Or would they decline union representation and pocket the extra $800? Given the narrow margin of democratic victory in the last gubernatorial election, and the fact that the state senate is now in republican control thanks to two “democrats” choosing to caucus with republicans, this is something to be concerned about.

As the GOP sets its sights on unions, any successful fight against a right-to-work campaign in this state lies in the hands of unionized workers.  Will nurse resistance to such legislation be adequate if 45% of nurses have no opinion or a negative opinion of unions? Given the unprecedented attack on unions, WSNA must reflect on how to encourage nurses to more closely identify with the organization. Once nurses identify with an organization, an attack on the organization is perceived to be an attack on nurses, increasing resistance to as of yet hypothetical right to work legislation. Don’t get me wrong; WSNA has done a marvelous job representing nurses by hiring organizers who are also nurses and advocating for patient safety. But as nurses tirelessly work to improve the quality of care they provide, so should WSNA work to truly be an organization of nurses, by nurses, and for nurses. As we’ve seen in Wisconsin and elsewhere, their survival depends on it.

So the big question. How to get more nurses to identify with the organization? Hand sanitizer is a good place to start.

When hindsight is 20/40, it is time to find a new pharmacy

As the 46% of Americans who take prescription drugs know, pharmacies are boring. You walk in, wait in line, hand over some money, and in turn receive a small orange bottle in a paper bag.  It was no different when I went with my partner to the University Village QFC to pick up her prescription.

After leaving the pharmacy, we ran to her car through oil-slicked puddles in an attempt to avoid the rain (oh Seattle).  Right after we entered the refuge of her car, my partner got out her pill bottle to take the morning dose of her medication.  As I started the car, she opened the bottle and a capsule rolled into her palm.  “That doesn’t look right,” I said.  My partner takes lithium, a drug I am fairly familiar with through my past work in inpatient psychiatry.  This pill looked completely unfamiliar to me.  “I have never seen any lithium like this,” she said in agreement.  She turned the bottle around to reveal a label with a name, birthday, and medication name completely different than her own.

“Clindamycin 150mg”.

My heart began to race and I could feel all the physiologic discomfort of a fight or flight response. (If only they had mistakenly given given my partner propranolol… sigh)  “I’m really sorry,” I said to my partner as a forewarning, “but I may end up being pretty confrontational.”

This was, after all, one of the many medication error scenarios I recently spent discussing, dreading, and anticipating throughout nursing school.  I also knew that these types of situations don’t just happen by mistake.  For every minute dedicated to discussing medication errors in school, many more were spent learning how to avoid such errors.  In pharmacies as in hospitals, there are systems in place designed specifically to prevent such errors from occurring.  Often when errors do happen, it is because health care workers aren’t using these systems properly.  In short, someone wasn’t doing their job.

We walked back to the counter.  The pharmacy technician greeted us with a look of surprise and, likely in response to anger written on our faces, concern. 

“What seems to be the problem?”  The clerk inquired.

“You gave me the wrong medication.” my partner shot back. 

The pharmacist became flustered.  “You didn’t take it did you?  Are you allergic?”  Finally it came out.  “I am so sorry.  Let me get you the right medication.” 

As I heard this I found myself faced with two options.  One, accept the apology, keep my mouth shut, and leave.  Or two, hold the pharmacy accountable for their error and ask what will be done to prevent such errors in the future.  I chose the latter, because like many nurses, I identify as a patient advocate. While nurses sometimes fall short, we ideally should challenge authority and hierarchy for the sake of our patients.  Such moral obligations are even written into our laws.  Nurses are mandatory reporters of neglect and abuse (among other things), not only at work, but in the community as well.  While I had no legal obligation to hold this pharmacy accountable and push them to implement safer practices, I felt an undeniable moral obligation.     

“Listen,” I said making no attempt to hide my frustration.  “This wasn’t a mistake. This was negligence.  There are systems in place to prevent this.  We both know your job is to check to make sure you are giving the right patient the right drug and you didn’t even look at the bottle.  As a nurse, I have patients that use this pharmacy.  I don’t want an apology; I want to know what you are going to change to make sure this doesn’t happen again.”

Either due to my playing the nurse card, or perhaps being a good person (though I’m always skeptical of pharmacists and dentists), the pharmacist conceded that yes, it was negligent and it was not simply a mistake. She explained that there was a system in place that evaluates these events and changes are made to prevent them from happening in the future.  With that, and the right medication (given free of charge), we left.

It was determined that the barcode on the pill bottle was covered by a “Take with food” sticker.  Normally, the pharmacy technician is supposed to scan the barcode on the bottle and the paper insert to make sure they march.  In this case, the bottle couldn’t be scanned due to the sticker.  Feeling rushed by a sizable line at the counter, the pharmacy technician simply handed my partner the prescription rather than taking the time to look at the bottle to make sure it was correct.  Yes, this was negligent, but it was also a system that made doing the right (safest) thing more difficult.  Whether one is in healthcare, designing computer systems, or a factory assembly line, systems should be designed in such a way that makes the right thing to do the easiest thing to do.  An example would be having the sticker with the name and medication also have the “take with food” instructions on it.  With only one sticker, there would be no way to cover the barcode.

I expected, perhaps naively, that next time I came in barcodes would no longer be covered.  Not so.  When I picked my own prescription up a few weeks later, the barcode was covered by another sticker.  I raised this concern a second time, and was brushed off with a “We will work really hard not to put stickers over the barcode.”    

As a result, I now get my medications at Bartell Drugs in University Village.  Unlike QFC, when the prescription label prints out, it has the medication warnings and instructions printed on the same label, completely eliminating the possibility of another sticker covering the barcode.  I sincerely hope QFC implements safer practices.  Until they do, go elsewhere.      

Measles? That is so 1890s

“The right to swing my fist ends where the other man’s nose begins.” – Oliver Wendell Holmes, Jr.

It was recently announced that a child with an active case of measles flew from Amsterdam to Portland, exposing an unknown number of people to the disease.  Measles, a highly contagious disease causing a high fever, cough, runny nose, and rash covering the entire body, isn’t something we hear about frequently. (Though it is known for killing many a traveler in the computer game “Oregon Trail,” proving that the dream of the 1890’s, where people needlessly die from entirely preventable diseases, is alive in Portland.)  And for good reason. There are less than 1000 cases per year in the United States, making it by any measure a rare disease.  In recent years, however, the number of cases has been rising.

What is causing the resurgence of this disease?  Put simply, rejection of the last few hundred years of scientific progress (i.e. forgoing vaccines).  The arguments against vaccines are largely misguided and fueled by suspicions of a profit-driven healthcare system and conflicts of interest rather than grounded in science (i.e. (usually) reality).  Like most all debates in the United States, the rhetoric of the anti-vaccination crowd is largely individualist and ignores negative externalities of the decision to refrain from using vaccines.  “I choose what goes into my child’s body.”  Implicit in this statement is, “I have the right to put my child’s classmates, friends, and neighbors at higher risk for being exposed to communicable diseases.  Ron Paul 2012.”

Whether we like it or not, we are interdependent and our decisions have impacts on those around us.  For the most part, public health policy recognizes this, with public schools (kind of) requiring children to be immunized.  Vaccine “mandates” like this are only being strengthened, where recently in Washington state legislation was passed making it more difficult to opt out of immunizations.  Perhaps in addition to schools, it is time we require people show their immunization record to the TSA before boarding a flight?  I certainly don’t want to be exposed to measles or whooping cough when I travel.  I imagine parents who have immunocompromised children or children who have allergies that require they go unvaccinated feel the same way.  Given that the TSA requires one show their ID, naked body, shoes, belt, liquids, metal objects, etc, all while subjecting yourself to unnecessary radiation, handing over your immunization record doesn’t seem that extreme.  If one is really opposed, there are always covered wagons.