Scatter my ashes here...

Scatter my ashes here...
scatter my ashes in the desert...

Monday, May 21, 2018

Kombucha Lady, Pseudoscience, and What's Missing (caution: seriously snarky & snarkily serious)

One of my pet peeves is the strain of armchair oncologists who seem to proliferate unchecked, spreading their genetic pollution and bullshit among the human species.

Those are the people who have no education, training, license, degree, board certification, or experience in the practice of the medical specialty of oncology, but possess the unabashed confidence that they know what will cure and/or prevent cancer better than anyone. Especially anyone who promotes the conspiratorial discipline of western medicine that is surely out to irradiate, poison, and depilate us all so they can laugh all the way to the bank. (Please, I’m being sarcastic here).

At the risk of sounding like JP Sears I need to release my frustration and exasperation. (I think JP Sears is hysterical and I wish he would do a video on curing cancer, it would be hilarious. And it would benefit me immensely- he could be the one offending people, allowing me a safe harbor for avoidance)

Since I rarely avoid confrontation anymore, I frequently set up a table or booth at health fairs and public events where I can promote my services and interact with people to discuss cancer. My cancer literacy booth contains information about why it’s important to think about cancer even if you’ve never had it, and has a list of common myths vs facts, basic information, and resources.

In these events I find out what people are thinking, seeing, experiencing, and perceiving about cancer. It helps me direct my information more effectively in meeting their needs. I often deliver educational presentations to dispel myths and misinformation about cancer. While I soft sell my book and my services as a survivorship health coach, speaker, educator and writer, one thing I do not do is hard sell products or services. Especially not products.

I frequently get cold calls from hucksters hard selling the latest in nutritional products or supplements who think I’d be willing to spread their crap to my own clients. They find out quickly how mistaken they were in contacting me.

When I set up my booth, it’s always hard at first to get people to come to my table- they see something about cancer and they avoid eye contact, the ambivalence is palpable from across the room. There’s some fear, but they are curious- it’s that morbid curiosity, yet they tend to stay away unless I can make eye contact with them and draw them in.

And there is always one person, who thinks they know what to do about cancer better than anyone else. They’ve never had cancer themselves, of course, but they know. And they come right up, without hesitation, complete with chest-puffing bully bravado and steam coming out of every orifice.

As it was with Kombucha lady.

She ambushed me before I even saw her come up to the table.

“Do you use Kombucha to cure cancer?” were her first words to me, before I could even greet her.

Her question took me by surprise at first- maybe half a second- and then of course I knew what was coming. I said, “No, I don’t.”

She shot back, “DO you know what Kombucha is?” As if I surely didn’t know.

In a covertly snarky but fake validating tone I said, “Yes I do know.”

First, there is nothing in my booth that says I cure cancer. I am not a doctor and I’m not even providing nursing care- what I do is called education. I even have a disclaimer that says all of that.

She gave me the side-eye like she didn’t believe a word I was saying. “Kombucha is better than any of that chemotherapy or radiation or those other cures that just poison you. People who drink Kombucha are completely cured- but the medical profession doesn’t want people to know that. There’s been research too. It’s all been hidden and it’s done in Russia. There’s this one place in Russia where everybody drinks Kombucha and nobody has cancer. You should look it up.”

She almost stopped but before I could reply, she continued, ”I know this goes against your western medicine point of view, but it’s true. You need to look it up. And I know, because I’m a PhD candidate.”

Oh, Lord.

I don’t think she saw my business card that says I have a PhD. I know she didn’t read anything in my display. I didn’t say anything to her that would convince her that my point of view was entirely driven by Western medicine. I scrambled for something to say that would either make her shut up and go away, or disappear. I didn’t have any water to throw on her.

“Well that’s great, with a Ph.D. you will be able to research that and when you have the evidence you can shout it from the rooftops.”

“Oh, it’s already there. They just don’t want you to know.” And she whirled out of there as fast as she arrived.

So...I hope she enjoys her doctoral program at Trump University.

No Ph.D. program can possibly fix stupidity or social ineptitude.

Debriefing for the masses

1.If she were truly a legitimate Ph.D candidate, she would:

• have an understanding of the scientific method. I can only imagine her professors hazing her when it came time to take her comprehensive exams.

• know better than to make assumptions,

• realize that we learn more through observation and listening than we do by asserting our opinion loudly and forcefully with a complete absence of self-awareness,

• have humility instead of arrogance- the more you learn, the less you know. I would have to say if you take nothing else away from a doctoral program, this is it.

2. I didn’t even get a chance to ask her if they did randomized controlled trials. Not that she would have understood what that means. You can do any kind of research you want, but you can’t try to pass it off as more than it actually is. You have to state the limitations. If there was no control group, then you must state that. If subjects are assigned other than randomly to the study groups, or if it is subject to bias or being contaminated by other variables in any way, you must also state that.

3. I did in fact look it up, for my own amusement. I was curious as to where she got this information and what she was reading that made her such an expert.(I didn’t even get a chance to ask her if she’s ever had cancer or anyone close to her has.)

As it turns out, most of the studies done on Kombucha that have been documented in peer reviewed journals are from 10- 20 years ago. Most of them were on green tea, not specifically on Kombucha, and the tea demonstrated certain activities in rats, mice, or in test tubes, but not in humans. It’s quite a stretch to take findings from animal or in vitro (test tube) studies and assume those findings will be duplicated in humans.

There have been more recent studies of the effects of Kombucha tea, but there has been no body of evidence based on repeated studies and similar or consistent findings. Anyone who cites “a study” and tries to generalize from that study’s findings also does not understand science. I’m not saying that they never will find evidence of benefits in the future, but the necessary body of research to draw conclusions has not been done.

The antimicrobial and antiproliferative findings of the tea were in test tubes, not in live subjects, and in Japan, where their culture, diet and just about everything, is different from the U.S.-you can’t generalize across cultures when there are so many confounding variables.

I could not find any human clinical trials of kombucha tea. And also, it’s a fungus- if you are suffering from a cancer that weakens your immune system- such as some blood cancers like leukemia- you might be hurting yourself more than helping by drinking that swill.

4. You can fix ignorant, but, as I said above, you can’t fix stupid, or social ineptitude.

So, like JP Sears would likely say, in his wisdom, yes, you have the right to be offended and to remain ignorant. You have a right to your own beliefs, but remember they are beliefs, not facts until shown to be real with scientific evidence. Furthermore, don’t even try to pass your beliefs off as facts and don’t spew and proselytize them as fact. By sharing your beliefs as facts, that’s deception, and with cancer, it could get someone killed.

5. Videos, documentaries, and advertisements that sell products making claims to cure or prevent cancer that fan the flames of ignorance, paranoia, and conspiracy theories is deception. When you make assumptions that you know better than years of scientific research that has millions of cases of demonstrated benefits and successes, you are acting without compassion, and certainly without empathy, unless you ask someone who has had cancer and been treated for it and find out what their experience and outcome has been after 5, 10, or 20 years.

6. People need to understand the difference between what they know and what they believe.

What's Missing

Most misconceptions behind the misinformation about cancer stem from a few misunderstandings.

We can fix ignorance. We can get people to think more critically and raise their level of understanding and awareness of the world around them. They need to be willing to do some work. They also need to be willing to be challenged in some of their ingrained beliefs.

The most common misconceptions about cancer that I hear from the lay public are:

1. Cancer is one disease that behaves predictably and each person’s cancer is like every other person’s cancer, so there must be one cure. There is no thought given to the differences between individual people, their environment, experiences, or their immune systems.

This is a holdover from the old, old days when we thought cancer was just one disease and we had much less knowledge and understanding about cancer. The lay public has not caught up in their knowledge, so we need to improve cancer literacy and bring it up to date.

What we know is that cancer is a disease of the cells’ genetic material that results in uncontrolled growth of those cells. It manifests in hundreds of different ways and cannot be completely predicted or generalized from one case to the next. It can arise in different organs or parts of the body and be triggered by different chemical signals, proteins, and alterations in genes that cause cells to behave differently than normal.

2. Mistaking “genetic” for “hereditary” and thinking that when we are talking about genetic mutations we mean hereditary mutations that are passed along from one generation to the next. What we know now is that most cancers are caused by somatic mutations in a person’s body- in your DNA- that affects the way your cells in your body function-not anyone else’s- that have nothing to do with the germline passed down through families.

3. They think cancer is caused by something definable outside of our bodies, and that it’s a matter of simply avoiding that thing and you can avoid cancer.

4. They think we can cure cancer with one thing- we just haven’t discovered that thing yet, and when we do, it will be the end for cancer. (See conspiracy theories below)

5. They think that cancer can be cured now. It depends on how you look at it. Since we can eradicate detectable cancer cells in the body, but there could always be a stray cell or more somewhere, we don’t know that for sure even with our most advanced technology, PET scans or blood tests. If the cancer is treated and never comes back, we tend to think that’s a cure. But we use the term “remission” because we never know if it will come charging back one day. We also know that if the person doesn’t have a trace of the cancer for many years, likely they are in permanent remission (or cure, if you wish to call it that). But you can never assume completely. And that is why people who have had cancer always have anxiety about it coming back.

6. This is the thing that peeves me the most: They want nutrition to be the holy grail of health. Because they can control what they put in their mouths, they get this false sense of security and arrogance that they can keep from developing cancer. Some people are like that with exercise. They think that stringent exercise programs will prevent it. They will not.

What we do know, through bodies of evidence, is that the healthier and fitter you are, the less likely you are to die from most chronic diseases. And if you do have cancer, and need treatment, the healthier and fitter you are, the better the outcome is likely to be. Less loss of muscle mass, less fatigue, fewer side effects from medication and treatment, and faster recovery after treatment.

7. Some people think cancer is contagious. It is not. They think death is contagious too, even when the word is spoken. that’s why they are so scared of having the conversations about cancer and advance directives and end of life planning and all of the other things we could do to make our lives so much more comfortable, meaningful, and enjoyable all the way to the end.

8. Medicine has the answers, so if we do get sick someday, we can rely on medicine to cure us, like antibiotics for a cold (being sarcastic, again: What we know is that antibiotics will not help a cold caused by a virus. Antibiotics work to kill bacterial infections.)

The problem with this mentality- thinking medicine will cure it- is that it ignores the responsibility of the person for staying healthy. Too many people live unhealthy lifestyles and have bad habits that lead to chronic disease such as diabetes, cardiovascular disease, obesity and metabolic syndrome, and chronic lung disease. They think medicine will save them. And they think the same way about cancer medicine, but when they are diagnosed with a very aggressive cancer or a very advanced cancer, they expect medicine to save them, when it often cannot.

Yes, we do a good job of advancing medicine and medical interventions, but not on building supportive social skills and services. We follow the money, not the quality of life. You might be able to get the medicine, but you can’t get your life back. So you need to take responsibility for that too. You can’t act like a victim when medical interventions don’t do what you wish they would.

I think we could combat this victim mentality by giving people the skills, tools and knowledge to take better care of themselves, of course that would require they were self-disciplined and motivated enough to use it. It's not that simple of course, but if people would take more responsibility for their own health it would help.

I’m not saying there is no greed or deception in mainstream medicine, quite the contrary. I think the healthcare industry is polluted through and through with greed in this world of mergers and administrative growth on steroids. People with fewer resources, who don’t have access to healthcare, education, income, and opportunities are at a great disadvantage and we should be fixing those inequalities now. The current status of the healthcare industry in our country is shameful and self-serving.

Conspiracy Theories

To the people who say there is a conspiracy around cancer- that “they” already have the cure but “they” won’t tell us because then the pharmaceutical and healthcare industry would stop making money- how is making money on drugs any different than making money on the untested supplements and natural products you are pushing with claims of better health?

While the healthcare industry is far from innocent when it comes to greed, and I think think they are even more subject to political influence than they were in the past- there is no difference in my mind between medical industry greed and the greed of the multi-billion dollar natural medicine/food/supplement industry.

The only difference is that in mainstream western medicine, the science is better established. It adheres more closely to the scientific method, does randomized trials, has far larger numbers of subjects, and has more regulatory oversight and safeguards than the supplement industry. Like anything else, this could change. But show me the bodies of evidence so I know you’re not just selling me what you believe.


I think educating the public is one of the best solutions. We need to get people to understand the importance of having the tools, skills, and knowledge to be able to survive encounters with the healthcare industry.

I wrote a book with lots of solutions in it, for people at all levels of involvement in healthcare. The prevent-prepare-prehab section in the appendix is a rough description of what I'd like to pursue- building cancer literacy among the public. People tend to push the idea of cancer aside, which is understandable. It’s scary, but it’s even scarier when you have no idea what’s ahead of you.

Having a little knowledge and preparation beforehand is not that difficult, and could make a big difference especially for those who have no family members or close social connections who are healthcare professionals. Having someone to advocate for and/or with you when you confront a serious illness is essential. The industry is too complex to go it alone, even if you are a healthcare professional.

The moral of the story is, drink all the Kombucha you want, I harbor no grievance against you. Bathe in it, mainline it, dry it and snort it, just don't tell me to use it to cure cancer.

Sunday, May 6, 2018

Nurses Week Takeaways from DC Part II: Spoken Words

Happy Nurses' Week. Here are some takeaways from my speech in order of appearance. Some of you might not like what I have to say, but I'm speaking my mind.

"I want you to go back to where you came from and convince at least one of your colleagues to get off their butt and do something about safe staffing- grow a pair, say something, step out of their comfort zone and take a risk."

I don't know about you, but one of things I find absolutely maddening and frustrating is the deferential nature of so many nurses when it comes to speaking up to management. For people who can be fierce advocates for their patients, and some of whom are willing to stick a knife in their own colleagues' backs, when it comes to speaking out about things in the workplace, they run and hide under a table and pee on the rug.

And then they sit behind the nurses station when the manager disappears and bitch about it among themselves in whispers. Pathetic.

"Then…I challenge each of you to have three conversations this year, out of your comfort zone. I want you to talk with that nurse colleague, and a physician, and with someone in administration, preferably an executive. I want you to find common ground with them as a human being and have a conversation. Break the ice by asking them, what is the most difficult part of your job… Let them know you’re interested in what they have to say. And then… creatively propose a way to start solving the problem of safe staffing. Together. Follow through. Commit."

We need to start talking with people, to get out of our everyday routine and realize that unless we start to take steps to change our situation, we won't ever make things better. Don't expect things to happen overnight. The point is, all of us, taking little steps as individuals, can create a powerful force. If you're too scared to have these conversations alone, find a teammate to go with you and back you up.

Don't be intimidated by executives. Just because they wear suits and make lots of money does not mean they have some kind of magic powers. Remember that inside that suit is a human being who could just as easily put on a pair of scrubs. Not that they would have a clue what to do next, but the point is, they are people. If you can relate to them as another human being and not some unapproachable authority figure, you'll have a much more relaxed conversation.

Sometimes physicians can be rushed, abrasive or unapproachable. They are always short on time because they are just as swamped with their patient load as we are. But by refusing to take time to interact within the greater community of healthcare, they are missing out too. They isolate themselves and this is not a good thing. I talk extensively about this in my book, Navigating the C. Physicians need to make themselves available and approachable by taking steps to take control of their own working conditions.

"When we have those conversations, there are a few points I want you to take away, remember, and use."

1. "There is a difference between safe staffing to avoid sentinel events and staffing that is adequate to improve a patient’s health after being hospitalized or being treated in a healthcare facility."

When you look at healthcare like any other business, the whole idea is to make money. But we're not just providing gadgets made on an assembly line. People and illnesses are unpredictable, they don't act in a linear, measured way. You can't set safety standards to cover all possible scenarios. There has to be some human judgement involved. It's not a factory setting.

Maybe with one nurse to 6 patients nobody dies on a given shift, but did every one of those 6 patients get their medicine on time? IV tubing changed? Dressings changed? Blood glucose checked on time? Call lights answered? Education completed with time to ask questions including on the day of discharge? Linens changed? Ambulation (walking) around the unit? Baths? Trips to the bathroom if an escort was needed? Did the nurse get all of the charting done and check all the orders within the limits of that 12 hour shift? Report given to oncoming shift without any omissions?

2. "Today’s nursing jobs are not the equivalent of a regular desk job. They shouldn’t be compensated like a desk job. Hour for hour, we put in a lot more work and have a lot more responsibility than your average paper pusher. It beats us up, physically, emotionally, spiritually. 36 ≠ 40! Think about that."

I know a lot of nurses (and laypeople too) think that working three 12 hour shifts a week is great because you get four days off, but you pay a price for that. How do you feel that first day off? Are you just as perky and productive, ready to jump out of bed and take on the day with full energy? Maybe if you're 23 and just out of school, but the longer you work and the older you get, the less resilient your body is going to be. It takes a day or two to recover your energy after working those back to back long shifts.

A 12 hour shift is never just 12 hours. Most nurses don't get paid breaks so they are scheduled for 12.5 hours- usually something like 7 am to 7:30 pm, or 7 pm to 7:30 am. Whether they took that break or not, and it's usually not. Add any time it takes to drive to and from work, find a place to park, walk into the building, get ready for report. For most nurses it's a good 14+ hour day. That leaves little time between shifts for basic self-care- like enough sleep, time to prepare and cook a healthy meal, spend time with your family, take care of pets, doing chores around the house that can't be put off, and so on.

Nurses might be considered full time at 36 hours a week, but they don't get paid any more for the hazards they endure, they don't always get ample vacation time, almost never get sick leave that isn't coming out of their vacation time, they never get compensated for missing lunch, they get in trouble for working unapproved overtime even though they can't finish all the documentation of their day within that 12 hour time frame because they were busy taking care of everything that came up around their patients' needs all day. Some nurses who are represented by unions might get some of these perks, but in most states, especially those deep red, "right-to-work" states, they don't get any extras.

During those long shifts nurses get progressively more tired, they get hungry, they aren't quite as focused and sharp at the end of a shift as they were at the beginning, or at the end of a run of 3 long days. They have to be on the lookout for physical hazards to patients, signs of a patient's conditioning worsening or deteriorating, making sure medication doses they give are correct, checking over the doctor's list of orders to make sure those are correct, tracking down physicians and ancillary staff, taking phone calls, interacting with family members, and things that happen without regard for a nurse's physical needs for food, bathroom, having a moment to clear their mind and think, or even getting off their feet to sit down for a moment.

And did I mention, responsible for the patient's life?

I think nurses should get paid a full-time, fully benefitted comfortable living wage for doing something on the order of three 8-10 hour shifts per week, so they have time to rest and recharge without burning out, so they can come to work able to fully focus on their patients' care. Yes I know this is a utopian dream, but I'm saying it because I mean it. Seriously.

3. "Nurses need to be able to do our jobs without sacrificing our physical or mental well-being. We need to see that we’re not stuck forever with only lateral options for career moves. We need to know that by advancing ourselves, we don’t have to sacrifice our integrity."

Nurses are subject to all of the emotions that any human being has. And we are working around some of the most vulnerable people in the population, as well as the stresses they bring in with them, that likely landed them in the hospital in the first place. Along with their family members and any other dysfunctional behaviors that they harbor in their everyday lives. And we often are on the emotional receiving end of those dysfunctions, when they are paired with fear and misunderstandings in regard to the patient's condition. We are subject to verbal and physical violence from stressed out patients and family members, as well as the internal, lateral and vertical workplace dysfunctional behaviors like bullying.

Nursing is a profession with a wide range of options for work, but within big healthcare organizations, the pyramidal nature of the hierarchy means there are few options for advancement. And more often than not, those with aggressive and less cooperative tendencies tend to move up the ladder, regardless of their leadership and people skills. Once they leave the bedside, managers are bound to serving the aims of the administration and no longer can prioritize their staff's needs.

Management is bound to keep administrative secrets and respond to staff concerns with carefully scripted messages dictated by the highest ranking administrators. Honesty is not always possible if a manager wants to keep the trust of the higher-ups.

4. "Keep your intellectual curiosity alive- don’t rely on dumbed-down, pharmaceutical and hospital industry-funded continuing education for all your career needs. They won’t help you go above and beyond. Strive to grow personally, strive to grow beyond the scripted, measured, limited status quo that keeps us stuck."

Attend any professional nursing conference and you'll see the vendor booths stocked with glossy, full color literature and trinkets from pharmaceutical companies, attractive marketing materials from healthcare organizations looking to recruit employees, and sponsorship logos and banners from industry leaders on every visible surface, screen, and object.

Continuing education is offered as part of the deal for listening to pharmaceutical companies tout their latest drug, so nurses only hear the industry side of things. They might get a nice dinner and a glass of wine too. They tell nurses the message they want them to hear, without any opposing viewpoints, critical questioning, or an explanation of the results of randomized trials that might lead one to question whether the thing they're selling is really as good as the profits they'll make.

Ever since I left the hospital setting, I've had much more energy and curiosity because I'm not so fried, and I read journals and medical and nursing newsletters, the latest research findings, I can seek out good continuing education on my own instead of having it fed to me passively. I've encountered a brick wall with my local chapter of my professional organization- I've offered on multiple occasions to talk with them about the work I've been doing, cancer survivorship topics, social media usage by nurses, and other ideas, and have been either ignored or told we can't afford to do that. Why? Because I'm not a pharmaceutical company with a budget to pay for a catered dinner and wine for a couple of dozen nurses.

Fuurthermore, speaking of professional organizations, nurse entrepreneurs with small businesses simply cannot afford to have vendor booths at these big conferences. The price per vendor booth is something like $3000. A small business cannot recoup that.

"We hear a lot about VALUE-based care these days, it’s one of those favorite buzzwords that the scripted bots of the healthcare industry love to hear rolling off their tongues. But healthcare won’t be successful unless those who deliver the care have human qualities to care. And exhausted, burned out, chronically understaffed nurses can’t care. Let’s start using value and care as verbs instead of nouns. How about if we VALUE nurses so we can CARE?"

I think this is self-explanatory.

"But most important of all- let's get back to value- each of us should think about what we value. We’re here for patient safety. We can’t live our values if we’re not authentic. When we know who we are, what we value, and why, we are grounded, and are less likely to be swept away by the strongest gust."

Hopefully this, above and below, is self-explanatory, too.

"If you take nothing else away from this rally, resolve to define your values around your work. Why did you become a nurse in the first place? What’s your number one priority as a nurse? Live and work in accordance with those values. Encourage your fellow nurses to do the same. Moral distress is not good for your health, or your patients’!"

"Patients and nurses alike, each of us only gets one life for sure. Let’s make sure each of us can live it fully."

Take it away, nurses...

Nurses Week Takeaways from DC Part I: Politics and Nursing

It’s Nurses’ Week again.

I'm going to write two posts of Takeaways from the Nurses Take DC rally in Washington in April. There's so much I want to say, I can't fit it in a single post.

For the first post, I want to go back to Pam Robbins’ presentation in DC, Ascend to Political Nurse Advocacy, because she pointed out so many important considerations for engaging all nurses in our cause. I am paraphrasing many of the statements she made and adding my interpretations here.

I’ve talked about some of these points in my book, Navigating the C, in regard to my experiences in healthcare, in an oncology nursing context, but it applies universally to all nurses, and all of healthcare. In my second post of Takeaways, I am going to incorporate some of what I said in my book along with the points I made in my speech in DC.

First, FEAR
Pam talked about fear being the biggest thing that holds nurses back. Part of it is the antiquated, unenlightened approach to thinking about gender and the roles we have associated with gender in the past. It’s time to discard those ways of thinking and be people. Yes, we have differences and that makes things interesting, but we are all first human beings.

Nurses MUST stop being martyrs and stop shortchanging ourselves with self-deprecation. If we want to be leaders we must overcome these fears, placing more value and believing in ourselves. Too many nurses are terrified they will lose their jobs for speaking up.

And I can tell you from personal experience, they will do everything they can, no matter how ridiculous and petty, to get rid of you do if you do. But if we don’t speak up, it means our patients’ safety is forever compromised. We cannot afford to risk their lives.

Nurses need to articulate our value to the public by getting out there, speaking to journalists, being interviewed, being visible on social media. We need to speak up in our professional organizations, who should also be involved in such matters, as unhappy nurses will not be as productive or influential in their careers.

Every professional specialty organization, such as AACN, ENA, ONS, AORN and so on, needs to take a stand WITH their nurses, instead of siding with those who will take advantage of nurses. The power gradient against nurses increases when our professional organizations do things that don’t truly help us. They may talk a good game but it is important for nurses to look closely at the policies they come up with.

That is why Nurses Take DC has offered similar but better legislation that works in nurses’ best interest. Working nurses should be in control, have more control, and right now, many professional organizations do not want to yield that. They mostly support industry interests and will back the administration’s interest over staff nurses. All you have to do is attend a nursing conference and you will see the disproportionate influence of pharmaceutical and hospital industry funding.

The fear extends beyond the workplace to participating and speaking within these organizations, too. Recently, I found it interesting that when I posted my reply to a post about the nursing shortage on the discussion forum of my professional organization, I only received one public reply. But I received several private replies from people, which tells me the level of fear is pervasive, to the point of not wanting to speak out even on these specialized forums.

If you’re one of the many (maybe majority still?) of nurses who say, I can’t lose my job, my livelihood depends on it, I have a family, a mortgage, my kids, or I’m a single parent, here is what YOU need to do.

  • In the workplace, form a coalition of nurses so you stand together when you approach management with an issue. Don’t leave each other alone- have each other’s backs.
  • You don’t have to necessarily be vocal in your workplace, either- you can be a nurse constituent and contact your legislators with your concern. Your employer won’t know about that.
  • There’s Flo’s Whistle, and anonymous reporting tool for unsafe staffing conditions in an easy to use app.
  • You can also become active in contributing and leading as a nurse in your community.

Here are some other practical interpretations I got from Pam’s presentation at Nurses Take DC.

Nursing Culture and Education
We need to start educating nursing students in both policy and taking political action. That is a tall order and a giant shift in the nursing school curriculum. Unfortunately, the abusive culture of nursing often starts in nursing school. Instructors exert their control over students and show them the ropes of the eat their young culture. Nurses need leadership skills and we need to start learning these early on in our careers.

Nurses can be, and have been, awful to each other. Nurses get so little recognition and expressions of appreciation. When there’s so little to go around, they fight over it, like a scarce resource, like dogs fighting over a bone. They feel constantly abused and taken for granted, and this feels like another reminder of just how insignificant they feel. It sounds like middle school all over again, and in many ways, it is. Stop it. Don’t be nasty. Grow up, act like mature adults. This applies just as much, if not more, to management. Leaders need to set examples, not be part of the problem.

Public Perception
Nurses need to learn how to stand up for themselves, to have a voice in their workplaces and in their communities, to be visible, audible, and persistent. The public does not have a realistic perception of what nurses do, how important we are, and our potential for stepping up our influence in public policy.

The Robert Wood Johnson Foundation published a report in 2010 based on Gallup opinion leaders polls conducted in 2009. Pam discussed some of the findings:

  • While opinion leaders nurses are the most trusted profession, the same opinion leaders perceive nurses as having little influence over healthcare reform in the near future.
  • Nurses are not perceived as important decision makers or revenue generators, and that we do not have a single (unified) voice on national issues.
  • The public views nurses as functional doers rather than thoughtful strategists. We need leadership skills, and we need to start early.

Paternalism in Healthcare
Healthcare is not all about medicine and physicians. Nurses are the ones who keep patients safe and alive, during times when the doctor is not there, which is over 99% of the time. Really. If the doctor is there for 5 minutes a day when the patient is in the hospital, that’s only about 0.3% of the time! So nurses are watching you 99.7% of the time. And nurses check the doctor’s written orders to make sure that everything is appropriate and safe for the patient, and we correct them if they are wrong!

I really think we need to start changing the language around healthcare workplace relationships between physicians and nurses- doctors writing “orders” still sounds so paternalistic, as if they are ordering us around, like we are their handmaidens.

Doctors write a medical treatment plan, and nurses have a nursing care plan, so it should be referred to as something more egalitarian, that can be established mutually in the interest of the patient’s safety. They can’t exist without each other, and they are important, I would even say that without nursing care, patients would be in trouble if they only had the medical treatment. Because nursing care will keep you going even in the absence of medical treatment.

In our politically divisive times, we also need to make the case that this is not about being pro-union or anti-union, Republican or Democrat, red/blue or purple state- but it’s about issues that affect everyone.

One thing that I add is that nurses wouldn’t think of refusing care to someone because they believe differently or have a different political affiliation, we accept everyone as our patients and give them equal care. This issue is beyond political divisions. Every single person is a potential patient.

And every one of us are, also.

Apathy and Democracy are Incompatible
We live in a democracy, but few of us take full advantage of the power it affords us. As citizens, we have the right to vote and make our voices heard, yet only a small percentage of the voting-eligible public votes! Only a miniscule proportion ever get involved in the legislative process.

If you saw something being done to your patient that would cause them harm, you wouldn’t hesitate to stop it and speak up on behalf of the patient. But when it comes to our country, and public health, safety, and well-being, few nurses use their advocacy skills.

If nurses would think of our country as their patient, insist on only the highest quality care being given, and protect the public from harm, we would make great strides.

Takeaways-What we need to do
1. Lose your fear. It’s power in numbers, and by banding together, you can help each other deliver a stronger message. When a colleague expresses a need to change things, don’t treat them as if they were radioactive. Instead, get behind them, support them, and bring others on board.

2. Don’t downplay the achievements of your colleagues, don’t put them or yourself down. When someone is recognized for an achievement, it’s common for backstabbing, envy, and resentment to well up among those who feel even more diminished if one of their colleagues is being publicly honored. When we raise the profile of nursing through one of our colleagues’ work, we lift all nurses’ profiles.

3. Stop making it about political affiliations. This is about everyone, we are all potential patients. This is about the public’s best interest, all of us.

4. Nursing education must start preparing nurses with skills on political advocacy, negotiation, and articulating the value of our profession to the public. If we can get the public to understand what we do, and articulate that clearly, we can show that healthcare is not all about medicine and physicians, the holistic approach to nursing care is what moves patients away from illness and toward wellness.

5. Research by nurses should hold equal status to medical research. You can give all the medicine you want, but unless there is someone there to make sure they are being cared for safely and that medicine is administered properly, all the medicine in the world won’t save a life. It’s not all about medicine and physicians. Nurses are the ones who keep patients safe and alive, during the times when the doctor is not there (which is most of the time).

6. Look at the different nurse staffing bills in front of Congress. Both the ANA and Nurses Take DC bills are based on evidence, but unless you have regulation with staffing ratios in writing that holds the employers accountable, you have nothing. We must hold our employers, as well as our professional organizations, to account and transparency.

While they are similar in many ways, note the ANA’s bills (S. 2446 and H.R. 5052) do not include a mandate for employers to commit to a staffing plan for their employees, in writing. The Nurses Take DC bills (S. 1063 and H.R. 2392) do have such a mandate, with proposed ratios in different clinical areas. Employers would not be able to avoid the staffing plan mandate. This protects both nurses and patients.

For more information about the Nurses Take DC movement, visit

The next post will be about takeaways from my speech at Nurses Take DC.

photo credit: Andrew Lopez

(Note: a variation of this post was recently published in Oncology Nursing News)

Nurses Take DC 2018

photo credit: David Miller

Last week, I attended and spoke at the Nurses Take DC rally for Nurse:Patient Ratios Now in Washington DC April 25-26. The purpose of the event is to bring nurses together to support federal legislation: Senate Bill 1063 and House Bill 2392: The Nurse Staffing Standards for Hospital Patient Safety and Quality Care Act of 2017.

Why do I post about nursing and healthcare on my running blog? Because it is an integral part of my life. Running is what keeps me going, it provides my energy and recharges me for the daily work I do, especially as a solo community figure working directly with people who are going through the trials of the healthcare system.

All of my readers, no matter how fit and healthy, are equally vulnerable to an encounter with the healthcare system, whether through illness, injury, accident, or a family member's experience.

Every person is a potential patient, and it's important to understand what nurses do, the importance of nurses, and why nurses are taking to grassroots advocacy to further our agenda through the legislative process.

For too long, nurses have been deferential to a healthcare system that has treated them as second class and given us less respect when we can not be replaced- the healthcare system would collapse if we were not here. But those in power talk out of both sides of their mouth, while they talk about a nursing shortage, they have not shown the moral or political will to do anything about it.

Nurses' top priority, above all, everything we do, number one on the list, always and forever, is patient safety. You can give all the medicine in the world and use all the technology you want, but nurses are there to ensure that the patient is not harmed in the process of administering that medicine and coming through the healthcare facility where they are treated without harm coming to them.

No matter how sophisticated and cutting-edge the interventions are, no matter how advanced the medications are, there is always, always, always risk involved-potential for adverse effects, mistakes in the form of human, mechanical, or technological error, and someone has to look out for the patient, providing checks on the system from admission to discharge from the facility.

About six months ago I was contacted by one of the organizers, someone I knew only through social media. I was surprised and honored to be asked, as most of my advocacy work has been in the form of writing about nurse working conditions and their impact on the patient experience. I discussed it extensively in my book, Navigating the C, as it applies to cancer care, but the premise is applicable to all of healthcare.

After catching the shuttle to the Denver airport at 2:30 am on Wednesday, I arrived in Washington late in the afternoon, the day before the rally. It was raining. My hotel was the headquarters for the event. That evening I an education offering, called “Ascend to Political Nurse Advocacy”, presented by Pamela Robbins, MSN, RN.

Pam has long been active in political advocacy for nurses and quickly drew the audience in with her explanation of the similarities between the nursing process and the political process, to make it relatable to all of us. It was a useful toolkit all packed into less than two hours. I met many people I've only talked with o social media, including my friend Andrew Lopez, who has been instrumental in encouraging my progress from hospital staff nurse to nurse entrepreneur and advocate.

The first night I was exhausted from traveling and went to bed early. I was still catching up on my sleep from the Palmer Lake 24 Hour, and three hours of sleep before traveling added to my sleep debt. I knew I would see everyone at the rally the next day.

Thursday was a beautiful clear day, perfect for the rally. I shared an Uber with three other nurses to the rally. We were dropped off right smack in front of the Rayburn House Office building- where the House of Representatives offices are. Yes, where the power, money, and influence happens. There was a long line that stretched all the way down the street of mostly white men in suits, with name tags indicating the entity they represented, obviously industry lobbyists waiting to exert influence.

My immediate gut reaction was resentment- I wanted to tell every one of those suits how their money-backed influence was ruining democracy, but I was quickly distracted by my companions who pointed out the capitol building across the street and the fact that we were there on a beautiful spring day that you couldn’t have asked to beat.
I quickly forgot about the lobbyists as we crossed over to Capitol Hill. It was breathtaking, seeing the Washington Monument and the reflecting pool, and the white columns and dome of the legislative seat of power of our country.
There were about two dozen speakers, including legislators themselves- Representatives Jan Schakowsky and Luis Gutierrez from Illinois both made appearances and spoke.
Dr. Laura Gasparis Vonfrolio was the keynote speaker, she's been involved in the movement for more than 20 years and reminded us to raise hell. “If you don’t fight for what you want, don’t complain about your situation!”
As the speakers took the podium, their tone ranged from powerful and inspirational to exhausted and shell-shocked. The stories of some of the nurses who had been fired, harassed, and threatened for speaking out were both maddening and heartbreaking. It still strikes me as beyond the pale that administrators should be so fearful of nurses who choose to speak their minds, but it happens all the time. And that is why we’re here, to support each other so no one has to be fearful.

I felt that my speech went well, I included some takeaways for nurses to go back home for effecting change in their own communities. I will discuss those in the next blogpost. If you want to listen to my speech, it is here.

Nurse staffing ratios are critical, but there needs to be regulation of the hospital industry, because without mandates, they will find workarounds, and nurses will continue to find themselves understaffed and compromising patient safety.

I remember 2012, when some well-staffed hospitals, in the middle of merger mania, experienced notable changes in their attitude toward nursing. Where the independent hospital might have had top-notch staffing and support, as well as respect for nurses, nearly overnight, nurses were told the staffing ratios were changing, their benefits would dwindle, and older nurses started disappearing left and right. Nurses were told point-blank, if you don’t like it, you can leave. I left. Why should I work in a place where I’m not respected or valued?

As time went on, it became apparent to nurses that they were making good on their threats, and no longer valued us for what we brought to the workplace. They only wanted us to fill the staffing matrix, keep our mouths shut, smile, and nod as they nickeled and dimed our benefits and job satisfaction away from us.

And we are always told it’s our fault if we can’t multitask, that we can’t be in two places at once, or remember everything because we are doing the work of two nurses.

Nurses are asking for national legislation to hold decision-makers in the industry accountable, so that our patients are not in harm’s way when we care for them in a facility that is supposed to be helping them.

After the rally was over, Pam and I went to lunch at Union Station, which is an amazing building, where the Amtrak trains come through and the architecture is mind-blowing...we headed back to the hotel via the Metro, which I learned was not a good means of transportation for me. All the lurching and stopping left me seriously nauseated!

Back at the hotel, we had an after party with nurse humorist Terry Foster, who is hilarious. It was a chance to talk further with some of the organizers and discuss future action, as well as relaxing and getting to know a few people better.

Friday it rained again, and I had some time in the morning before I had to catch my flight, so I went to get Starbucks and then walked along the Mt. Vernon bike trail along the Potomac.
I posted a couple of videos on social media about my thoughts and experiences, and said goodbye to the people who were still around in the lobby of the hotel.
I headed back to the airport to fly home with a sense of empowerment, a tool kit, some great advice, and feeling much less alone. For me, the best part of attending the rally was the new friends I made- colleagues who share my passion for making change, ready to work hard and not give up, willing to go back home and spread the word, bring more nurses along next year, and help others lose their fear.

I learned about turning your concerns into political action and how nurses can effect change in our profession. Despite what you might think about political divisions, apathy and fear are truly our biggest enemies. Here is a link to the House Bill 2392 sponsored by Rep. Schakowsky.

We can use technology to our advantage when talking to legislators, because there is new app called Flo's Whistle that helps report unsafe staffing conditions by legislative district. Nurses can show their representatives in Congress what is going on in their districts and they'll have data to back it up.

My next post will be about Takeaways from my speech to the DC rally, to keep nurses motivated and focused forward all year. For more information about the Nurses Take DC movement, visit