How Compassion and Dedication Fulfilled A Cancer Patient's Last Wish To See Her Son Get MarriedNov 20, 2023
It all started when I was an oncology nurse practitioner in a busy GI Oncology practice. I was mainly responsible for symptom management for patients undergoing chemotherapy. One day I was at the end of clinic and called by the treatment nurse, who informed me that one of our patients’ total bilirubin level was out of therapeutic range for treatment. I consulted with my managing oncologist, who asked that we hold treatment that day and order a scan to see what was causing the elevation. After conducting the scan, we found that the patient had disease progression, which meant that her chemotherapy was not working.
I was fortunate enough to be in the room when the oncologist was discussing further options for her. Option one was to use second-line chemotherapy to try to buy more time. And option two was to enroll her in hospice for comfort measures. We briefly discussed clinical trials; however, the patient would have to travel often and was not interested in any of the trials that were offered.
She then asked the tough question: “How much time do I have left to live without treatment?” She mentioned her son was getting married in five months and wanted to know if she could live long enough to see him get married. The oncologist was honest and said it is hard to tell how long and could not truly give a timeline, but it was unlikely she would make it more than 3-6 months.
I was there to pick up the pieces of that tough conversation after the oncologist left. We agreed that the decision for hospice did not have to be made at this visit and that we could continue to provide her with supportive therapy until she decided about chemotherapy or hospice. She did require a biliary drain to help her T. Bili go down and reduce her jaundice.
That night I went home with a heavy heart, knowing that she probably wouldn’t make it to her son’s wedding without treatment. I knew how hard chemotherapy was on her already and didn’t want to ask her to continue suffering if she didn’t feel like it was in her best interest. I continued to look up clinical trials and drug companies allowing compassionate use.
Compassionate use is sometimes possible when the investigational new drug is needed to treat a serious or life-threatening condition and there is some clinical evidence suggesting that it might be effective in that condition.
That night I found a drug that was under investigational study for cholangiocarcinoma (bile duct cancer). My patient had adenocarcinoma of the gallbladder (gallbladder cancer), however, because it is in the general vicinity of the same organ, I wondered if it could be an option for her. I reached out to the medical director overseeing the clinical trial. I asked if they would consider “expanded access” or “compassionate use” of the drug for my patient just to extend her life long enough to attend her son’s wedding. They said they would consider it and asked for more information about the patient. I then discussed this with the primary oncologist who basically gave me the wheel and said, “Let’s do this.”
I gathered as much information about the medication as possible and found that it was not chemotherapy and had minor side effects for patients. It was an oral medication that she would not have to come in and get infused with. Although it was a shot in the dark, in my opinion, it was a shot worth taking. I set up a meeting with the patient and her husband so that I could discuss her options. I remember feeling so nervous because the last thing I wanted was to give false hope. After a long discussion about the experimental medication, both she and her husband agreed to move forward with compassionate use.
I was so excited, however slightly hesitant because, although I was an expert in symptom management, I wasn’t as confident in the nuances of the use of experimental drugs, FDA, or IRB (Institutional Review Board) approvals.
After a long process of writing the protocol and getting approvals, I was able to get my patient started on the experimental drug. Thankfully, she didn’t have any side effects, and we scanned her two months after initiating therapy where she demonstrated a “mixed response.” Essentially, one tumor had improved while another tumor had worsened. We all decided that we would continue since the benefits were outweighing the risks.
Unfortunately, shortly after her first scan, she developed a fever and ended up in the ICU because of septic shock. When they did a scan, they found her to have hepatic abscesses that required draining. This woman was superhuman - and walked out of the hospital three days later! We did not feel that the medication caused the hepatic abscesses or caused the infection, however we put a hold on the medication until she fully recovered.
We saw her in the clinic eight weeks later for a scan, which found that the hepatic abscesses had improved and there was no evidence of cancer in her liver! We were all in complete SHOCK! She continued to need the biliary drains because she had persistent issues with her T. Bili levels, however this was a miracle for her!
We restarted the medication once her abscesses had resolved, and she did really well for an entire year! She attended her son’s wedding and continued to be present at birthdays and special events for the rest of her life.
Although she continued to stay “disease free,” her liver had too much damage, and she passed away peacefully in hospice surrounded by her family about one year after she initiated therapy with the experimental medication.
This experience taught me SO much about the relationships we nurses build with our patients and the impact we have in the world.
You will often hear me say, “There are people who depend on you to step into your purpose.” This story is my reason for that statement. I am thankful for the opportunities my NP degree has given me. And I am eternally grateful for my patients, who have trusted me with their lives.
This Thanksgiving, I am thankful to be part of a profession where I have the skill and autonomy to care for patients in a way that only a nurse practitioner can.
I wish you the happiest of Thanksgivings. I am grateful for you and the impact you make in this world. Thank you for all you do and all you will do in your career. Wishing you the best this career has to offer, always.
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