	Associate Professor, Michigan State University College of Nursing

It was another great summer evening in Michigan, and my best friend was at the door ready to go on our daily run as we prepped for the Chicago Lung Run that was going to take place in the fall. I had never participated in any kind of run previously but thought it was for a good cause, and my best friend’s enthusiasm for running fueled my motivation. My friend had always been a runner, and I could always count on her showing up at the door each night for our training run.

This evening the weather was great as we began our jog through the streets of my neighborhood. Like most nights, my friend was having no issues with the run while I labored trying to keep up with her. We had just completed our run and walked into my kitchen when my friend staggered and fell to the floor. She was glassy-eyed and confused, and I immediately rushed her to the emergency room, as my friend had no other family member. I have been a nurse for 30 years working in critical care but never the “family member” for a loved one, and the unknown was scary.

The ER personnel walked me through the tests they were running and what they were looking for. My friend was off-the-chart hypoglycemic, and they immediately gave her a bolus of glucose to stabilize her and then shifted their focus to the potential cause. The ER staff answered each of my questions, and I appreciated their candor letting us know the ramifications of the situation. They were also in constant communication with my friend’s primary care physician, going through her health history and ensuring all pertinent post-episode tests were run. Unfortunately, the worst fears of the ER staff and the primary care physician were confirmed: my best friend’s hypoglycemic episode was the result of an insulinoma—a rare, deadly, pancreatic tumor that lives off the body’s glucose.

The diagnosis of an insulinoma was a shock. Not being familiar with an insulinoma, the primary care physician answered a number of questions. What were the options? What were the ramifications? Was she susceptible to having her blood sugar freefall again? The primary care physician was patient and went through each option and the immediate ramifications of living with this cancer. The choice was made to have surgery at a university hospital specializing in resecting these tumors.

My friend and I met with the surgeon and she answered each of my questions in detail.

As the primary caregiver, I really appreciated the time she took explaining the procedure, the ramifications of the surgery, and what to expect the day of the surgery. The surgery lasted nearly 3 hours. The surgeon met with me immediately after and explained that while the surgery had been a success, the tumor appeared to have satellites to the liver, and the prognosis was not good. With diet and chemotherapy, my friend may be able to live up to 6 months.

While I knew this was a potential outcome from our meeting with the surgeon the night before, it was still a shock that my running partner I could never keep up with a few weeks ago was now living with a terminal illness.

The postsurgical transition home was made easier as the surgical nurses detailed how to care for the incision and the importance of taking the pain medications as prescribed, as well as how to be active while balancing rest and sleep, and to eat healthy while keeping up the blood sugars. The nurses also ensured we had follow-up appointments to ease the transition from surgical recovery to end-of-life care.

I learned that being a healthcare professional provides little solace during these situations and only amplifies the limitations of medicine. While none of the news was good, the news was delivered by the various members of the healthcare team in a respectful manner, ever cognizant of the audience. While I held my best friend as she passed, I couldn’t help but reflect on the excellent healthcare she had received and how they had paid special attention to me—the caregiver&mdash;and my needs. I also reflected on how incredible it would be if this same level of healthcare could be given to people and their caregivers. My best friend and running partner was my 7-year-old golden retriever, Frosty.

Unfortunately, many patients and their caregivers are not afforded the same level of care my pet received. Health systems are overburdened, leaving healthcare providers stressed with little-to-no time to go beyond meeting the immediate need of the patient. Coordinating care of patients through their healthcare transitions takes time, but if done successfully, can result in seamless, coordinated care where patients thrive. Likewise, ensuring patients and their primary caregivers are given the proper information to successfully manage their illness is critical, as both the patient and their primary caregiver will play a significant role in how the patient manages the recovery trajectory.

While I loved my Frosty dearly, many of us will have to face the reality of cancer, heart disease, diabetes, and a multitude of other comorbid conditions with our grandparents, parents, children, and friends. When we do, wouldn’t it be nice if we as caregivers did not need to worry about making sure all providers involved knew what medications were prescribed, what tests were run, or having to rely on a Google search to see what we should expect postsurgery or what the side effects of medications might be?

Coordination of care and educating patients and their caregivers, to optimize their self-efficacy to manage their care in partnership with the healthcare team, needs to be the standard of care throughout the survivorship trajectory. Hopefully, in the near future, all healthcare will be equivalent to that received by me and my best friend Frosty.

Articles

Coordination of care and educating patients and their caregivers needs to be the standard of care.

Switching Places: From Nurse to Caregiver 

	Amy Hoffman is an assistant professor at Michigan State University College of Nursing in East Lansing.

“Let me show you my incision. It’s nearly 2 feet long! I never imagined I would be in this much pain. I was sent home with 30 Vicodin for pain to get me through the first week, but I’m worried I may need more pain medicine.”

This is the typical greeting I receive when I first meet my post-thoracotomy patients after they return home from the hospital. The incision is shockingly large, the pain is outrageously significant, and consequently, their longer term plan for pain control has them very apprehensive. Unfortunately, more often than not, the post-thoracotomy patients’ apprehension is proven correct, and their severe pain is continuing well past the first week of their home recovery.

However, many patients choose not to call their providers, stating their fear of being labeled “drug seeking” or a “wimp,” believing that since they were given no refills for their pain medication, the expectation must be that they should not need more when they run out.

 Instead, many patients choose to “tough it out” and try in vain to treat their pain by taking over-the-counter medications and limiting their mobility. Further, the continuous pain and lack of movement initiates and/ or exacerbates other symptoms like weakness, fatigue, dyspnea, difficulty remembering things, and distress, thus leaving the patient in a dangerous downward spiral during what should be their recovery process and decreasing functional status and quality of life.

 Unfortunately, it appears that an unintended consequence of addressing opioid abuse has been the reluctance of providers to prescribe and an unwillingness of patients to request needed and appropriate pain medication.

Healthcare policy and provider behaviors in response to anti-opioid reporting continue to cast a pall over access to effective pain management for those who suffer from acute and chronic pain. The crux of the problem lies in the National Institutes of Health, National Institute of Drug Abuse report that abuse of prescription medications is on the rise with more than 5.1 million people reported using prescription painkillers non-medically in 2010, that is, using them without a prescription.

Reports such as these have cast a black cloud over all providers and patients such that providers under prescribe so they cannot be accused of over-prescribing, while patients under report their pain so they cannot be accused of being an “addict.” This combination of under-prescribed pain medication, coupled with underreporting by patients, has created the perfect storm for post-thoracotomy patients. As a result, many post-thoracotomy patients act as good soldiers following orders without complaint, left to their own devices to fight their severe pain with over-the- counter medications.

Unfortunately, the deleterious effects of the pain often take a significant toll, ultimately leading to a call to their provider—not by the patient&mdash; by the emergency room, who is trying to piece together what to do to alleviate the multiple, significant issues the patient presents. Consequently, although healthcare policy has changed, some things have not changed since Margo McCaffery stated in 1968: “Pain is whatever the experiencing person says it is, existing whenever he says it does.”

 Pain after a thoracotomy is very severe, and more than likely the most severe pain ever experienced after surgery—just ask someone who has had this surgery.

One look at a post-thoracotomy patient’s incision would leave even the staunchest opponent to opioid prescriptions asking for their prescription pad to help alleviate pain for 1 more week of recovery. I know that if you had asked my grandfather who had a thoracotomy and later passed away from lung cancer in 1975, he would have told you that he can attest to the post-thoracotomy pain that he and many of his heroic buddies who stormed the beaches with him in Normandy experienced.

Moreover, although I was only 10 at the time, I clearly witnessed my grandfather suffer through the pain caused by his huge incision, retraction, resection, fracture of ribs, irritated pleura, injured nerves, and more normal responses of the human thoracotomy experience expressed as pain, including other comorbid diseases. I would have to agree that when he said he had severe pain, I had to believe what he said was true—it truly was pain.

While abuse of prescription drugs is a phenomenon that needs to be addressed, the phenomenon of under medicated pain for post-thoracotomy patients must also be addressed.

Judgment must be used, such that pain management no longer negatively stigmatizes patients and providers alike, especially in obvious areas of need such as for post-thoracotomy patients. To prescribe or not to prescribe is no longer the question for post-thoracotomy patients. To prescribe is the answer, and work is needed to remove the disincentives to prescribing and the stigmas attached to requesting help when obvious pain is out of control.

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			National Institute on Drug Abuse, National Institutes of Health. Popping pills: Prescription drug abuse in America 2014. http://www. drugabuse.gov/related-topics/trends-statistics/infographics/popping- pills-prescription-drug-abuse-in-america. Accessed November 12, 2014.

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Many patients choose not to call their providers, stating their fear of being labeled "drug seeking" or a "wimp," believing that since they were given no refills for their pain medication, the expectation must be that they should not need more when they run out.

Amy J. Hoffman, MSN, PhD, RN

Articles

Switching Places: From Nurse to Caregiver

To Prescribe or Not to Prescribe?: Pain Management for Post-Thoracotomy Patients