Although it sounds absurdly simple, one of the best and most effective ways to manage your loved one’s care while they are in the hospital is to make this question your mantra:
Does what the medical professionals are telling me make sense?
The hard truth is that blindly trusting that “doctor knows best” is a recipe for disaster, based on our experience. I am not suggesting that we should doubt our doctors, nor that we should not trust them– I am simply recommending that the acid test of logic be applied to all input from medical personnel.
Let me give some examples of how asking ourselves this question saved John from inappropriate drugs being prescribed, from “expert” advice from a nurse which was wildly inappropriate, and from needless suffering caused by a doctor who paid no attention to what his patient was telling him…
I suspect that most spouses and caregivers to cancer patients become patient advocates in the same way that I did: they didn’t want it, never ever imagined that they would be in this position–yet found themselves suddenly and completely unexpectedly thrust into an alien environment with rules of engagement about which they knew nothing.
This is how and why this blog, which is now in an E-book format that can be read on your computer (http://www.amazon.com/dp/B004T3331M) came into existence. The remainder of this chapter explains a simple way to assess the effectiveness of the pain drugs being administered to you loved one, how to make the most of your post-surgical pain pump while in the hospital, and basic rules of the road for preventing constipation.
You have stumbled upon a rare opportunity to learn first-hand from another colon cancer patient’s four years of experience in navigating the colon cancer maze.
Our doctors told us we were the most informed patient team they had ever encountered– yet we felt utterly lost a great deal of the time. Every cancer patient I’ve talked to felt the same way. We learned so much about The System, and how critical being an informed patient is to getting the treatment you need, how to deal with difficult doctors, troubleshooting and taking charge of pain control– and so much more, none of which you will hear about from your doctor.
You owe it to yourself and your loved one to benefit from all that we learned the hard way. This is the kind of information that, until the publication of this book, could only become part of your database by living through it and realizing in retrospect how all the pieces fit together: colon cancer from the patient’s and caregiver’s point of view. $9.99 seems like a very small price, considering the emotional and physical suffering you will likely be saved by learning from our experience.
Shedding Light on the Cancer Journey: Navigating the Colon Cancer Maze http://www.amazon.com/dp/B004T3331M can now be read on any computer or other reading device. The reader interface is available free from Amazon and is downloadable in seconds.
I will realize absolutely no profit from the sale of this book. All proceeds from the sale of this book will go towards the support of the 400 monks, nuns and yogis in the seven Tibetan monasteries of Tulku Orgyen Zangpo Rinpoche, who have devoted their lives towards building the foundation for peace and freedom from suffering for all beings in this world.
Shedding Light On the Cancer Journey 
Two suggestions to add to your highly valuable information on questions a patient advocate should ask:
1) If the patient is going to have surgery (no matter whether it’s in- or out-patient), ask the anesthesiologist “Can you include anti-nausea medication in the anesthesia?” Anesthesia often makes a patient very nauseous afterward. It can be suggested to the anesthesiologist that he include anti-nausea medication with the anesthesia, which will greatly reduce or prevent post-surgery nausea.
2) Ask every medical/health care professional BEFORE they touch the patient, “Did you wash your hands?” The top reason patients contract infections in the hospital is due to the lack of washing of hands by doctors, nurses, and everyone else on the medical team. They may be offended, but too bad. Better to offend, than risk more problems.
Sheryl Kurland
Orlando Patient Advocates
Raquel, as an oncolgy nurse of 14 years, I’m extremely disturbed that you had to worry about “advocating” for John to get standard medical care when tou should have been solely able to focus on being a supportive caregiver/wife to him. When a patient is on a PCA, the continuous rate should be enough that the patient does not have to wake up in pain, nor should anyone have to wake the patient to remind them to use the medication. Your nurses were not very astute. If it’s seen that the patient is using the bolus frequently, OR bolusing frequently during lockout time, THE NURSE SHOULD BE THE ONE ADVOCATING FOR AN INCREASED CONTINUOUS DOSAGE. I am SO VERY SORRY you had to endure such ineptness!!!!
The same can be said for the constipation issue. NURSES should advocate for their patients. We are with them 8 to 12 hours a day (depending on the shift), we “should” be assessing bowel patterns and changes in status. Again, I’m so sorry! As for the surgeon being incredulous that no one ordered a bowel regimen…let me say this…surgeons notoriously ONLY focus on orders that relate to the procedure they performed…the procedure itself, not so much the side effect or other problems. They leave those things to the medical team. Sad but true…
The “does this make sense”….yes…PLEASE always ask yourself that question. People aren’t always aware that residents are still STUDENTS!!! Although I allow them to participate in my or my families care, I NEVER allow them to make a final decision without talking to the ATTENDING physician myself. As a nurse, I know to do this, but again some people will not know this. As a nurse, there have been many times that I have disagreed with the treatment plan or symptom management prescribed by the resident, and have called the attending to verify. A truly GOOD nurse does this FOR her patients….so that the family does not have to worry about advocating.
I love your blog and came upon it after reading your post about RFA on the Colon Club (my username is “WhatsA_Mom2Do). I came to read the one post you linked, but have been reading the entire blog. It’s great and from your writings, it’s evident that John was lucky to have you in his life.
All the best,
Dee
Well, Dee, your comments on what the nurses should have been doing (monitoring PCA usage and constipation issues) illustrate the difference between a really good nurse and a nurse who’s just logging in the hours to get a paycheck. Most of John’s nurses fell into the latter category, unfortunately. Some were very kind, but few were looking at the Big Picture– most had never been exposed to the “nurse as patient advocate” concept that you so clearly espouse, and it seemed that NONE would have ever considered questioning the doctors orders. Hence, my role as patient advocate…
Re: the constipation issue- in our situation, there was no “medical team” to oversee such issues. The way our hospital system worked, if the patient was admitted by his/her surgeon, then the surgeon was responsible for all aspects of the patient’s care. There were no hospitalists involved. Yes, you’re absolutely right– surgeons think that their job is surgery, that bowel issues are somehow beneath them. Thank God I had years of second-hand experience on this subject from hanging around with hospice nurses for 25 years!
All of the above are just part of the reasons that I started this blog. I was already aware of many of these issues, and John and I talked often about how truly scary being a cancer patient must be for the medically naive, the timid and the very sick and weak. We both felt that if what we learned the hard way could possibly ease the path of others, then that would give some meaning to John’s suffering…
Aloha, Rachel