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

[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.

[OrganizedChaos, LVN]

I learned I need to stay away from personal YouTube channels. Specifically the ones that discuss labor choices. I got fed up with one lady who is pregnant, going into her 43rd week & just wants to let the baby come "naturally". On top of that she wants to have an unassisted home birth. She has previous medical issues & no amount of peer reviewed journals can convince her other wise. Also she believes that all nurses do is wipe ass & clean bed pans. I had to block her before I really lost my cool.

On a more positive note, I find out the gender of my baby this week! Yay!

[nutella, MSN, RN]

LadyFree28 said:

^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!

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.

I would love to teach this part of nursing ...

I am hoping to go and become a train the trainer for the ELNEC curriculum because I want to offer this basic palliative care education for our hospital system to nurses.

One thing I have notices is that nurses learn a little bit about all those issues I write about in school but you do not see the ice berg until you work and see what is happened nowadays.

I spend a fair amount of time talking to bedside nurses - nurse to nurse - and try to help them understand some of the issues that patients and families are facing and how nurses can help.

It is very specialized knowledge and I have a lot of "tools" for different problems - bedside nurses are usually happy when they feel empowered.

[Cheyenne RN,BSHS]

OC, you found out the gender and didn't share it with us???? OMG I am crushed, wounded, cut to the heart. Do we celebrate with blue balloons or pink ones????

P-l-e-a-s-e share this joyous news. Pretty please???

[OrganizedChaos, LVN]

Cheyenne RN,BSHS said:

OC, you found out the gender and didn't share it with us???? OMG I am crushed, wounded, cut to the heart. Do we celebrate with blue balloons or pink ones????

P-l-e-a-s-e share this joyous news. Pretty please???

LOL. I haven't found out yet. I go this Thursday & will let everyone know as soon as I find out. I would never keep you guys in the dark!

[OrganizedChaos, LVN]

So no ultrasound today. I'm really bummed.

[Meeshie]

I've re-learned that when storms are coming in Florida people get a little.... interesting. The hurricane is hitting today and suddenly there's no gas at most of the gas stations in town, no food or drink in many of the stores, no propane to be had. Like people JUST get gas or food or water or propane because of storms and not at any other time? It's weird. The panic down here is real.

I'll catch everyone after the storm. :) Have a great weekend.

[OrganizedChaos, LVN]

IT'S A BOY!

[LadyFree28, BSN, LPN, RN]

Congrats OC!!!

[LadyFree28, BSN, LPN, RN]

Meeshie said:

I've re-learned that when storms are coming in Florida people get a little.... interesting. The hurricane is hitting today and suddenly there's no gas at most of the gas stations in town, no food or drink in many of the stores, no propane to be had. Like people JUST get gas or food or water or propane because of storms and not at any other time? It's weird. The panic down here is real.

I'll catch everyone after the storm. ? Have a great weekend.

Hope you are OK!

I have former coworkers doing travel nursing down in FL...I'm keeping my thoughts with everyone to be safe and survive the hurricane.

[WKShadowNP, DNP, APRN]

I learned that an 18ga needle in your breast hurts a lot. Not where it entered but where it ended up and that I really don't mind if he didn't get the 5th cyst he was going for because the 30ml he drained from the others made a difference.

[xoemmylouox, ASN, RN]

First I have to say CONGRATS OC!!!!!!!!!!

I cared for my first patient this week who suffered Malignant Hyperthermia. That was a learning experience. She has a long road ahead of her.

I am learning that even I, the woman who shows no weakness, can get too exhausted to really think. Between work, school, and life - I've got little actual "free thinking" going on anymore.