Scatter my ashes here...

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

Friday, April 17, 2015

The Pre-Nurses' Week Cancer Rant

Yesterday I had lunch with Wheaties Boy's mother-in-law, Faustine. I admire this woman in so many ways. We have a lot of interests in common, obviously health and fitness, but also cancer and healing. She has been a massage therapist for years, doing medical massage and has worked with many people with cancer.  She is also the epitome of vibrant and healthy aging. And gorgeous, she literally glows. 
We talked about my business ideas and where I'm moving with my online service development. We discussed the important components of empowering people to improve their own well-being after diagnosis and treatment for a serious illness, and moving beyond the sticking points. One of the things that I'm passionate about is getting people the answers to their questions that can't be addressed in a short doctor appointment, but not having to stress themselves financially in order to get the help they need. 

Medicine is becoming more of a product and not a service, and doctors are being squeezed for time and production...getting the patients in and out, and those short appointments don't leave room for explanation, education, or personalized attention. The rushed encounters-yes, they literally are referred to as "encounters" in the popular electronic health records...don't leave docs much time to have meaningful discussions with patients or teach them the finer points to empower them to manage their health.

Nurses can and often do fill many of the gaps in information and explanation, but they are under similar time and documentation constraints and in the rushed corporate health care environment, many of the details slip through the cracks as the robotic expectations of the organization for which they work supercede the desire to sit, educate, and empower.

This patient empowerment is a huge unaddressed need, especially in the time period after they get done with cancer treatment. Patients feel lost and abandoned in that transition from cancer patient to...not sure what they are afterward. Called survivors, they don't always feel like they survived. There are patronizing references made to what they feel after treatment. "The new normal" is one of those that makes me grind my teeth at night. 

Feeling like crap with nowhere to turn is not normal. It's not fair or humane to tell them, "well, we treated you for cancer, we poisoned you, burned you and cut out parts, so now you're supposed to go through life tired, sick and debilitated. Get used to it. It's your new normal." 

Not cool. 

People deserve to get information and help in restoring their health, in terms they can understand, and in ways that they can apply to their own lives. They need to do much of the work themselves, because only they can determine where they want to end up in terms of quality of life. But they need guidance, support, and attention getting there after enduring the rigors of cancer treatment and all of the associated emotional, social, financial, spiritual, psychological, and physical invasions in their lives. 

As Faustine and I discussed our ideas and experiences, I thought about my trip to Arizona, where I'll be talking with my dad and stepmom about what day are going through right now, trying to manage my dad's upheaval with chemo and all the fatigue that has stripped away his normal energetic life. Between naps and blood transfusions, he is able to carry on with some of the activities he enjoys, but I had to explain to him why it was not a good idea for him to call his personal trainer to come over for a workout the day after his blood transfusion...which is exactly what he did before I happened to call and catch him in this error that could have resulted in quite an unfavorable outcome. 

He's being treated at a world-renowned cancer facility yet no one explained to him why being severely anemic is not a good condition from which to exercise. Why? Because in medicine, they often don't think to ask about the daily habits of patients, their lifestyles, or what their normal activities are. And my dad doesn't have an education in exercise physiology or health care. They neither have time, nor the thought process in place to do so. It's just not how medicine thinks. 

Even if by chance someone did explain something to him, there is not adequate time for them to assess his full understanding of what they taught him. There is no time for "teach-back" or a way to ensure that the message they tried to convey was received, absorbed, and understood.

So it's just by chance that my dad as a cancer patient happens to have a daughter who is an oncology nurse and told him that not having enough oxygen in your blood to feed important organs like your heart and brain during exercise could result in you having a heart attack or passing out and falling and injuring yourself. And stopped him before it happened. 

People are not being given the attention they need and doctors are not referring them to appropriate resources for help, for their individual lifestyle needs. It happens during treatment and after completion of treatment. And that is what I want to address in a way that is affordable, accessible, understandable, and useful. 

Yet I can't get doctors to give me the time of day to let me explain them how I can help their patients. They're "too busy". So I go directly to the patients themselves. That's okay, but it would be much better if the doctors were aware of this service and could let their patients know. Sad reflection on the state of health care, isn't it? 

You can't make an addict stop the addictive behavior until they want to. You can't change dysfunction from within the system. So I do it from the outside. Meanwhile the doctors will continue to be unaware of these resources available to their patients. And they will do a disservice to their patients by omitting that important information that makes a difference in their healing and quality of life. 

Which is why I've been saying all along, health care is neither health nor care. 

We can do better. And I am. 

End of rant. 


Robert Dunlop said...


I just discovered your blog via a Twitter "follow" recommendation. Very interesting indeed. I look forward to reading more and pondering your various concerns and points of view.
I'm not a runner, but there are other areas in common beyond nursing and blogging for the public health. In particular, I love Death Valley and know Bad Water well, as well as many other locations in the valley. My long-distance aspirations include repeating my 250 mile hike on the John Muir trail at age 50, back in 2000. If all goes well, it'll be my 66th birthday present next summer...
Bob Dunlop, MSN, RN
NurseBob -

Alene Gone Bad said...

Bob, welcome to Journey to Badwater. Thanks for reading. A fellow Death Valley enthusiast! I am also a graduate of the JMT (1981). Love that area. Best of luck to you on your 66th birthday goal. I look forward to corresponding and sharing our mutual interests in nursing and public health...