WILTW 10/1/16: Lights up to Activism and Bonus Points

[LadyFree28, BSN, LPN, RN]

Hi everyone!

It has been a VERY busy week for me; being a healthcare activist is something I have always though about, but could NEVER imagine being a part of-through union activism.

In my area, by the time I entered heathcare was becoming dormant-there were merging of hospitals and-my favorite made up word I used to throw around on here-corporization of healthcare was firmly in place; there was no way around it, and there was only one hospital standing that had unionized nurses before I became a nurse. Healthcare workers were unionized, and Registered Nurses were "not allowed" to be represented by a union because we are looked to as "leadership" at some area systems; in my travels as an employer some of the benefits and pay were elevated to us based on having a union in place because hospital admin wants to have a happy place to work.

Well.

To have a surge in union membership and to join a union that has a pretty good reputation from word of mouth because the pressure to do more with less-the true corporate models that take state, federal and private money that makes hand over fist while short changing real end users and people who juggle the day-to-day operations of the business was too much for the place I worked (and most places); not to mention power-tripping middle management making my unit almost like an abusive relationship; to sit on the sidelines shell-shocked on how they treated certain individuals, even knowing that they were hiring someone who had experience in leadership and had tutelage of "servant leadership" and to quote that buzzword without the actions was astonishing, and frustrating.

When a flyer appeared in my staff bathroom on New Years Day, there was no doubt in my mind to join the cause. I am from a union family, benefited in places where a union was in place, and knew people who worked in the union hospital where I received my education and how the nurses were activists at the bedside-some may call it fluff, but the Nursing 101 of introductory to nursing, bursting with information, at least in my experience, where the information form nursing educators preaching advocacy and "having a seat at the table" to make decisions and take to task how to be an agency of change IS my reality-and I wanted people who were awesome nurses, some who lived in the community I served, I wanted MORE for them as they have helped me be a better nurse; to educate and help others harness what advocacy and activism can look like while being professionals-we are professionals, we do a lot of critical thinking, along with life coaching and emotional management 3-5 days a week, and clocking in/out has NOTHING to do with professionalism-and seeing the results of peers that have taught me the ropes strengthen and blossom their inner activism and advocacy though the vessel the nursing process is amazing. It doesn't hurt that new leadership that supports nursing and nurses doesn't help either!

Being a newbie at activism, and heavily supported by creating new ideas and informing people though my experiences is a powerful exchange; something that I am in awe of and always humbled everyday.

So, What I Learned This Week (WILTW):

1. Hospital administrators have thin skin against educated nurses, and truly don't understand or like how contract negotiations diminish their power, especially when they have been ineffective and unfair to the communities that they claim to "serve".

2. I learned how difficult it is to get an IV in a kid with an active nephrotic syndrome crisis; with the blood being viscous due to hyperalbuminemia and clotting during the process, it also makes for craftily avoiding the blood clots to ensure all the labs can be performed.

3. That middle management can play nice and continue to support my clinical pathway; and I may be doing another education based on my presentation-which is exciting and terrifying at the same time.

4. That I need a great plan on how to juggle education time as well as overtime-I've snagged more bonus days, and I need to figure out how to juggle the two; sometimes when you have life goals the challenge to rest while you are trying to get closer to a goal makes it all more challenging.

This is has been my theme song all week while working and it has been getting me through the week.

So, what have YOU learned this week?

[TheCommuter, BSN, RN]

I learned that obesity, once established, is never really curable. It can certainly go into remission when one loses enough weight to attain a normal body weight, but it is not cured. The formerly obese person's body is ready to regain at a moment's notice due to a permanently altered biochemistry.

[nursej22, MSN, RN]

I learned why many inpatient rehab stays are 28 days, nothing to do with evidence-based practice, more about someone's best guess and what insurance will pay:

Why Are Most Addiction Rehabilitation Programs 28 Days? : Shots - Health News : NPR

I've doing quite a bit of reading about drug treatment and the poor success rate of AA.

I also learned about Erb's point for assessing heart sounds. I learned about Apt. M when I did my training in the Stone Age, but now apparently the mnemonic is Ape Me. I am working with first quarter nursing students this fall, and they are a hoot!

[nursej22, MSN, RN]

Whoops, that should have been "Ape to Me", I left out the under appreciated tricuspid valve.

[LadyFree28, BSN, LPN, RN]

nursej22 said:

I learned why many inpatient rehab stays are 28 days, nothing to do with evidence-based practice, more about someone's best guess and what insurance will pay:

Why Are Most Addiction Rehabilitation Programs 28 Days? : Shots - Health News : NPR

I've doing quite a bit of reading about drug treatment and the poor success rate of AA.

I also learned about Erb's point for assessing heart sounds. I learned about Apt. M when I did my training in the Stone Age, but now apparently the mnemonic is Ape Me. I am working with first quarter nursing students this fall, and they are a hoot!

I remember the Ape to Man...and that was about 6 years ago they were still teaching that-good to know for my future knowledge!

[LadyFree28, BSN, LPN, RN]

TheCommuter said:

I learned that obesity, once established, is never really curable. It can certainly go into remission when one loses enough weight to attain a normal body weight, but it is not cured. The formerly obese person's body is ready to regain at a moment's notice due to a permanently altered biochemistry.

I hope that the public can realize obesity is not shameful; there were many generations that had obese citizens; there are cultural genealogies that have been studied that have evidence that there a various body types and dispositions, along with statistical public health factors that are raising obesity to something to cease looking at as a "wellness shaming".

[LadyFree28, BSN, LPN, RN]

WKShadowRN said:

I learned that you really should be sure there is no nail polish on before using a bovie (electrocautery) on a subungual hematoma.

I learned that I can suture a frozen but thawing piggy foot.

I learned that when it really counts, my coworkers can come together to support one of our own. A very loved coworker is going through a terrible thing and at least 71 of us working today all wore shirts bought to honor her struggle and journey. We wore them at work and she made a surprise visit. Her reaction was so touched and many of us could not refrain from some sniffles and tears.

I learned that wearing my brand new danskos two 12 hour shifts back to back was a poor judgement call. I'm glad I'm off for the next two days so my legs and feet can recover.

Nothing like helping others in the workplace; against most of the stressful and crazy times, a group can pull together like a family and support one another.

Hipe your legs feel better!

[nutella, MSN, RN]

Activism is important but it is hard to mobilize nurses even when their work conditions are "bad".

Obesity .... it has been my experience that gaining weight is very easy and I probably have to stay on a low carb diet for the rest of my life or I will gain weight back.

What I learned this week:

When I read in the Journal of Palliative Medicine that patients with cancer often do not have end-of-life discussions because they are delayed until it is past being useful I was only able to nod my head. Research has shown that open discussions about a person's illness, wishes, and preferences is connected to treatment that is more congruent with a person's wishes, get less invasive treatment at the end-of-life, and acknowledge the terminal illness.

That points to a big problem we are seeing. When a person gets diagnosed with cancer, especially if it is advanced or aggressive, it seems that everybody switches into crisis mode. Oncologists outline a plan for treatment that often includes surgery, chemo therapy, radiation - and newer - immunotherapy. Some patients get all of those treatments, some only certain ones as determined by their treatment team.

And cancer treatments are advancing with new drugs or methods all geared towards ridding the person from the cancer cells, which also seems to create the illusion that "there is a cure out there - you just have to find the one that works, keep on fighting, don't give up" - like getting "cured" from cancer is determined by a person's will to endure.

What seems to happen a lot is that in this crisis mode, after people get diagnosed, especially if not early stage cancer or aggressive cancer, patients and families basically run from appointment to appointment - treatment to treatment, without any time for reflection and without any guided conversations from their oncologist. There does not seem a moment when the oncologist uses clear language and verifies how patients and families understand the illness. Sadly enough, when I ask "can you tell me in your own words what you understand about your illness and where you are at with it?" not everybody has a clear understanding. Sometimes people do not understand their surgery, or the extend. Sometimes they are not aware of that the cancer is advancing despite treatment. And now comes what bothers me most:

There are patients who receive treatments as "salvage" meaning that the cancer does not respond to treatment and we are talking about a last ditch effort here. But although the oncologist clearly writes about it - the patients do not always understand that this is "last ditch" and we are not aiming at cure because there is none. That in fact this is all to gain some more time but may be interfering with quality of life. This blog page talks a little bit about it and also about "palliative chemo"

Salvage Chemotherapy and Palliative Chemotherapy

So when those patients say "I am beating this, I go to chemo every 3 weeks and I am looking onto clinical trials" I am concerned about the patient's understanding. Is this just an expression of hope and wishful thinking with a touch of denial - or - does the patient not understand ? What about the family?

And often enough it turns out that while everybody is in crisis mode and "fighting the illness", the oncologist did not use clear language and have a sit down that focuses more on the general outlook and treatment preferences and goals. Too often, those patients and families go from crisis to crisis and patients spend a considerable amount of time in the hospital, clinics, sick at home only to discover at the very end that they have very little time left but now are so sick and deconditioned and unable to do what they would have liked to do if they had realized earlier.

It is really the clear language that is missing and many oncologists have the hardest time with it because they are uncomfortable themselves. So instead of having a structured serious illness conversation (which medicare reimburses now) and also talk about the outlook and the wishes "if things do not go well" and "to prepare a plan B", they say things like "You have stage 4 cancer and we can try this and this treatment" and focus on explaining the treatment and get busy with sending the patient to another round of tests and images. Often enough, people think that the doctor conveys the message "you have stage 4 cancer, but do not worry, we can treat you with this and that" indicating a cure or the promise of a certain cure. It seems to come as a shock when patients and families finally understand that there is no cure and all that they are really doing is trying to maximize the time left -- but with quality???? that often remains the question and is subject to a person's preference.

The latest in cancer treatment are those :

Types of Cancer Treatment: Immunotherapy - National Cancer Institute

and also go down to "targeted therapy" and such.

It sounds so good - help the person's immune system to fight cancer. And while the TV adds try to tell people that they will be "all happy and smiling" while getting more time, the reality is not like that. Those therapies also have side effects and - more important - the medication needs time to work. It takes weeks. So why is it offered to patients that appear to have only few weeks left based on their decline in functional status. Does it make sense to give it to a patient who is obviously close to the death bed? Once you have declined in functional status and your body is weak - how will this help? Sadly enough, those patients tend to get a lot of side effects that diminish further their quality of life for the last weeks...

Opdivo commercial vs. the reality of stage IV cancer treatment

It is heartbreaking to see families struggle with the realization that there is no cure while they continue to stay in crisis mode looking for "one more clinical trial" and "the new thing that is right around the corner" while their loved one has started the journey that is known as "actively dying process" or they are very close. By that point, the patient will often know instinctively, because they are suffering from all kind of symptoms and are weak, de-conditioned, tired of pain and discomfort, tired of struggling to get squeeze another week of life.

If oncologists could see what happens along the road when the patients come to the hospital at the end of their crisis journey, ill prepared to face the reality with family who is also ill prepared and everybody assuming that "dying is optional" they would put more thought and effort into actually talking with clear language, in a format that makes sense!

It is better to have a conversation early on and have a sit down. Make sure they understand what is going on - in their own words - and give them a prognosis that makes sense. It does not have to be the "you have 3 months left" type, it can be "this is not something we can cure, we can only help you to get some more time" or "your time may be shorter than what you think it is". So that it sinks in. Yes, we want to give you what you want - which is "more time" for most people - but you need to start thinking about how much you are willing to go through, what is important to you, and what you want to do when things get worse.

Instead of going from crisis to crisis without a second to think, have a plan that will help to know when it is time to focus on quality of time and comfort as opposed to "more time".

I talked to a friend who has undergone clinical trial treatment for an advanced cancer. While the friend talked about the aggressive treatment and also about the ongoing problems that came with the chemo including cognitive impairment, neuropathy, tiredness and so on the friend also verbalized clearly that it is not clear "how much time is gained" indicating an understanding that this is all to get more time but it is not a cure. What I said was this: All the side effects and ongoing problems are the result of using toxic substances in an attempt to kill off cancer cells. That is the trade off. But now you have time left to use for something that is meaningful to you. Now is the time to do something that you feel strongly about, that is on your heart and mind, while you are feeling "well".

Here is my bedside nursing tip for all of you who work bedside nursing or other form of primary nursing in any setting.

When you care for a patient with advanced cancer (or any other illness that is advanced) and you get the idea that the family and patients do not understand what is going on, it is not useful to say something like "but you know your father is dying, right?" . A good way is when you do your assessment to ask "can you tell me in your own words what you understand about your illness and why you are here?" and have the family / patient verbalize. I sometimes will also ask "have you had an opportunity to talk to your specialist about the outlook of your illness?" to find out what has been understood.

If I find that there is not a good understanding I will contact the physician who is the treating one and ask them to come by and have a conversation that uses clear language to facilitate understanding. Sometimes I also call the social worker or the chaplain for support. Sometimes the patients are so sick and the specialist can not come in to see the patient - I still recommend that they talk to the family/patient at least on the phone. Sometimes it is the hospital doctor who has no relationship with the patient or family who has to tell them "it is time to switch from trying to cure to being comfortable".

Often enough, it is the nurse who picks up on the fact that the patient and family do not understand the illness, the progression, the outlook, and also that they have choices. You do not have to go through all treatments known to man kind - if your expectancy is less than 6 months you can chose to focus 100% on comfort and use the time left with quality of life as determined by the patient. Or you can do some treatment but not others.

That is an important lesson I have learned - it is a lot about the language and bedside nurses can empower the patient and family through using sensible language.

Sorry - that got long...

[pixierose, BSN, RN]

Nutella -- thank you for sharing that info. I find your posts truly enlightening. I'm actually shadowing the palliative nurse this week; I put in the request and it went through (had no desire to shadow the OR, and actually thought back to a post several weeks ago on how nursing students don't get this experience. It's only a week, but it's a start).

[nutella, MSN, RN]

pixierose said:

Nutella -- thank you for sharing that info. I find your posts truly enlightening. I'm actually shadowing the palliative nurse this week; I put in the request and it went through (had no desire to shadow the OR, and actually thought back to a post several weeks ago on how nursing students don't get this experience. It's only a week, but it's a start).

I am glad that you have this opportunity ! I hope you find this enlightening!

Not all palliative care teams do the same thing that my team does and the role of the nurse can vary but I think it can be an eye opener. Our team sometimes has somebody for internship or clinicals and such - and everybody leaves with new insights and sometimes even wondering where our healthcare system and how we deliver care is going....

I was hoping that perhaps next year at some point I can have students from nursing school do some kind of clinicals with me - not sure yet.

[Kitiger, RN]

This week I learned that I really don't like a No-Compete clause. I had to sign it to follow a client to this agency. I stayed, and took another client, who has now left the agency. The fact that the client left is not my doing - I would not try to lure a client from their agency!

The agency says they need the No-Compete clause to protect the agency. The way I see it, it's good for the agency, but punishes both the client and the nurse. I am not allowed to work for this client through another agency for a period of one year from the time I was last in the home.

I have not accepted any other clients through this agency, nor will I, until they remove the No-Compete clause.

[LadyFree28, BSN, LPN, RN]

nutella said:

Activism is important but it is hard to mobilize nurses even when their work conditions are "bad".

^Yes...it can be "hard" to "mobilize"; however, when you are looking at things that are so bad, so dangerous, where you are not protected and with the realization that it's brown everywhere, but most of all-how the patients are being treated, it does help to ethically look at what's right.

I utilized myself during the whole process; I was targeted by middle management during this time; I spoke about it on a previous WILTW thread where they waited for a chance to write me up, but then realized who they were writing up. I letting peers know I was targeted, and WON.

Knowing someone one who has your back and wants your best interests at heart helps with mobilizing the cause...at least this time!

Quote

Obesity .... it has been my experience that gaining weight is very easy and I probably have to stay on a low carb diet for the rest of my life or I will gain weight back.

What I learned this week:

When I read in the Journal of Palliative Medicine that patients with cancer often do not have end-of-life discussions because they are delayed until it is past being useful I was only able to nod my head. Research has shown that open discussions about a person's illness, wishes, and preferences is connected to treatment that is more congruent with a person's wishes, get less invasive treatment at the end-of-life, and acknowledge the terminal illness.

That points to a big problem we are seeing. When a person gets diagnosed with cancer, especially if it is advanced or aggressive, it seems that everybody switches into crisis mode. Oncologists outline a plan for treatment that often includes surgery, chemo therapy, radiation - and newer - immunotherapy. Some patients get all of those treatments, some only certain ones as determined by their treatment team.

And cancer treatments are advancing with new drugs or methods all geared towards ridding the person from the cancer cells, which also seems to create the illusion that "there is a cure out there - you just have to find the one that works, keep on fighting, don't give up" - like getting "cured" from cancer is determined by a person's will to endure.

What seems to happen a lot is that in this crisis mode, after people get diagnosed, especially if not early stage cancer or aggressive cancer, patients and families basically run from appointment to appointment - treatment to treatment, without any time for reflection and without any guided conversations from their oncologist. There does not seem a moment when the oncologist uses clear language and verifies how patients and families understand the illness. Sadly enough, when I ask "can you tell me in your own words what you understand about your illness and where you are at with it?" not everybody has a clear understanding. Sometimes people do not understand their surgery, or the extend. Sometimes they are not aware of that the cancer is advancing despite treatment. And now comes what bothers me most:

There are patients who receive treatments as "salvage" meaning that the cancer does not respond to treatment and we are talking about a last ditch effort here. But although the oncologist clearly writes about it - the patients do not always understand that this is "last ditch" and we are not aiming at cure because there is none. That in fact this is all to gain some more time but may be interfering with quality of life. This blog page talks a little bit about it and also about "palliative chemo"

Salvage Chemotherapy and Palliative Chemotherapy

So when those patients say "I am beating this, I go to chemo every 3 weeks and I am looking onto clinical trials" I am concerned about the patient's understanding. Is this just an expression of hope and wishful thinking with a touch of denial - or - does the patient not understand ? What about the family?

And often enough it turns out that while everybody is in crisis mode and "fighting the illness", the oncologist did not use clear language and have a sit down that focuses more on the general outlook and treatment preferences and goals. Too often, those patients and families go from crisis to crisis and patients spend a considerable amount of time in the hospital, clinics, sick at home only to discover at the very end that they have very little time left but now are so sick and deconditioned and unable to do what they would have liked to do if they had realized earlier.

It is really the clear language that is missing and many oncologists have the hardest time with it because they are uncomfortable themselves. So instead of having a structured serious illness conversation (which medicare reimburses now) and also talk about the outlook and the wishes "if things do not go well" and "to prepare a plan B", they say things like "You have stage 4 cancer and we can try this and this treatment" and focus on explaining the treatment and get busy with sending the patient to another round of tests and images. Often enough, people think that the doctor conveys the message "you have stage 4 cancer, but do not worry, we can treat you with this and that" indicating a cure or the promise of a certain cure. It seems to come as a shock when patients and families finally understand that there is no cure and all that they are really doing is trying to maximize the time left -- but with quality???? that often remains the question and is subject to a person's preference.

The latest in cancer treatment are those :

Types of Cancer Treatment: Immunotherapy - National Cancer Institute

and also go down to "targeted therapy" and such.

It sounds so good - help the person's immune system to fight cancer. And while the TV adds try to tell people that they will be "all happy and smiling" while getting more time, the reality is not like that. Those therapies also have side effects and - more important - the medication needs time to work. It takes weeks. So why is it offered to patients that appear to have only few weeks left based on their decline in functional status. Does it make sense to give it to a patient who is obviously close to the death bed? Once you have declined in functional status and your body is weak - how will this help? Sadly enough, those patients tend to get a lot of side effects that diminish further their quality of life for the last weeks...

Opdivo commercial vs. the reality of stage IV cancer treatment

It is heartbreaking to see families struggle with the realization that there is no cure while they continue to stay in crisis mode looking for "one more clinical trial" and "the new thing that is right around the corner" while their loved one has started the journey that is known as "actively dying process" or they are very close. By that point, the patient will often know instinctively, because they are suffering from all kind of symptoms and are weak, de-conditioned, tired of pain and discomfort, tired of struggling to get squeeze another week of life.

If oncologists could see what happens along the road when the patients come to the hospital at the end of their crisis journey, ill prepared to face the reality with family who is also ill prepared and everybody assuming that "dying is optional" they would put more thought and effort into actually talking with clear language, in a format that makes sense!

It is better to have a conversation early on and have a sit down. Make sure they understand what is going on - in their own words - and give them a prognosis that makes sense. It does not have to be the "you have 3 months left" type, it can be "this is not something we can cure, we can only help you to get some more time" or "your time may be shorter than what you think it is". So that it sinks in. Yes, we want to give you what you want - which is "more time" for most people - but you need to start thinking about how much you are willing to go through, what is important to you, and what you want to do when things get worse.

Instead of going from crisis to crisis without a second to think, have a plan that will help to know when it is time to focus on quality of time and comfort as opposed to "more time".

I talked to a friend who has undergone clinical trial treatment for an advanced cancer. While the friend talked about the aggressive treatment and also about the ongoing problems that came with the chemo including cognitive impairment, neuropathy, tiredness and so on the friend also verbalized clearly that it is not clear "how much time is gained" indicating an understanding that this is all to get more time but it is not a cure. What I said was this: All the side effects and ongoing problems are the result of using toxic substances in an attempt to kill off cancer cells. That is the trade off. But now you have time left to use for something that is meaningful to you. Now is the time to do something that you feel strongly about, that is on your heart and mind, while you are feeling "well".

Here is my bedside nursing tip for all of you who work bedside nursing or other form of primary nursing in any setting.

When you care for a patient with advanced cancer (or any other illness that is advanced) and you get the idea that the family and patients do not understand what is going on, it is not useful to say something like "but you know your father is dying, right?" . A good way is when you do your assessment to ask "can you tell me in your own words what you understand about your illness and why you are here?" and have the family / patient verbalize. I sometimes will also ask "have you had an opportunity to talk to your specialist about the outlook of your illness?" to find out what has been understood.

If I find that there is not a good understanding I will contact the physician who is the treating one and ask them to come by and have a conversation that uses clear language to facilitate understanding. Sometimes I also call the social worker or the chaplain for support. Sometimes the patients are so sick and the specialist can not come in to see the patient - I still recommend that they talk to the family/patient at least on the phone. Sometimes it is the hospital doctor who has no relationship with the patient or family who has to tell them "it is time to switch from trying to cure to being comfortable".

Often enough, it is the nurse who picks up on the fact that the patient and family do not understand the illness, the progression, the outlook, and also that they have choices. You do not have to go through all treatments known to man kind - if your expectancy is less than 6 months you can chose to focus 100% on comfort and use the time left with quality of life as determined by the patient. Or you can do some treatment but not others.

That is an important lesson I have learned - it is a lot about the language and bedside nurses can empower the patient and family through using sensible language.

Sorry - that got long...

No worries! Explaining the end-stage scenario and the gray area that patients face and ultimately ends up at the bedside where we are managing their care and having this info is vital information!

Now If you can string this information together and make this a great part of end-of-life teaching during nursing school; not every program goes into depth about end of life care, especially the gray areas.