Compassionate Advocate in Cancer Care

Publication
Article
Extraordinary Healer®Extraordinary Healer Vol. 18
Volume 18

An extraordinary oncology nurse guided cancer care for a man who was legally blind.

line-drawing image of nurse leading blind man with walking stick

"I remember meeting Mr. Z for the first time, a legally blind gentleman with such a positive outlook."

Christine Simonelli, BSN, RN, CCRC, OCN is amazing, and 250 words will never be enough to express my admiration.

Patient Care: She goes out of her way to help providers. She sees every patient in her clinic, not just those who screen positive. She will tell you that there are many more questions that need to be asked, especially symptom management and social needs, as each patient with their disease and treatment is different. While she can work from home on Fridays, she often comes in to lend a hand. One nurse practitioner recently was very excited to learn that this nominee had come in to assist her in clinic. She exclaimed how excited she was to be working with her that she knows it was going to be a good Friday.

Nursing Systems: This nominee is collaborating with me and leading a nursing research study (mixed-methods design) on the financial impact care imposes on hematology-oncology patients. She is passionate about this and looking to forward to analyzing data to improve care and resources. She is also a sought-out preceptor for new hires.

Professional Service: This nominee serves on the board of our Oncology Nursing Society chapter as membership chair. She is running again in our upcoming elections. Her passion for encouraging membership from local hospitals is indescribable. She has created welcome letters and reminder emails to renew. She is a great ambassador for oncology nursing, always smiling, lending a hand and putting her patients first.

I cannot think of anyone more deserving. Here is an exemplar Simonelli shared with me:

I remember meeting Mr. Z for the first time, a legally blind gentleman with such a positive outlook. He came alone to his new patient appointment a couple of years back, and I couldn’t fathom how he made his way into the building and all the way to our clinic without assistance. I remember guiding him up to check out, and the patient service representative telling me she would get him to his community transportation outside.

What I remember most about that day was coming home from work and placing him in my prayers. Please, God, don’t let this man’s disease ever become active and require treatment. Thankfully, we were able to watch him with surveillance labs quarterly for almost two years without therapy.

During that timeframe, he never brought anyone with him to his appointments and was not very forthcoming with details of his personal life other than that he lived alone and was very independent. What I feared most came to fruition this past year, with his disease becoming active and requiring initiation of treatment. I remember that day well, too. I remember the physician’s concern, pondering if we could place him on a study, as he was a young healthy patient that could potentially benefit from a novel treatment regimen.

(This) was very different from my initial concern of how we can even safely give this man therapy. So many questions ran through my head. How could he be accountable to take an oral oncolytic at home? What if he took the wrong pills? What if he got sick in the middle of the night? How would he be able to reach us or get to us? What if he had a fever? How would he even know he had a fever if he couldn’t read a thermometer? Who would be there to care for him? The questions were endless.

I felt very uncomfortable asking him direct questions as to potential caregivers, as it was clear that he really didn’t wish to involve anyone. Our social worker was wonderful and helped him to come to the realization that he was going to need the assistance of his family and how to discuss this with his family. The (clinical) trials office was consulted, and it was determined that the patient could be consented after the consent was verbally read to the patient and all questions answered to the patient’s satisfaction.

I couldn’t have been any happier with this as I knew there would be an extra layer of care built into his treatment plan. He would have even more eyes watching out for him. I was on a mission that day. I knew we had to succeed in making this a smooth transition from observation to treatment and that I needed to make certain not only did I have all of my questions answered, but that my patient did too.

I left work that day and spent the next few days searching the web for solutions, reaching out to local community resources and searching drugstores for pill dispensers that would benefit a patient that had not been previously on any medications. Thanks to Amazon Prime, by the time Monday arrived, we had a talking thermometer and three different pill dispensers.

Through research, I had found that Walgreens has a program for the visually impaired where “talking” pill caps are able to be placed on prescriptions free of charge. Each of his prescriptions was programed with alarms to remind him of when to take them and read the prescriptions directions to him with the push of a button. We spent time practicing using the thermometer as well as return demonstrations opening the pill bottles and listening to the label directions. Home health was consulted to do a home safety evaluation and set up medications. The clinical trial coordinator and I programmed our work telephone numbers into his iPhone so that he could call with voice control.

But the best part was coming into the clinic on the day he signed consent to find not one, but three older doting sisters by his side. Each one had a multitude of questions not only about the disease, the clinical trial, but how on Earth their brother had been coming to Moffitt by himself for over a year and a half without them even knowing he had been battling this on his own. It was amazing, each eager to assist! It made my heart happy that this man had more support than many and that everything was falling into place.

His road has not been without a few stumbles, but he has had much support to assist him through his journey. So many of Duffy’s Caring Factors (our nursing research theory) are being used in the care of Mr. Z not only by nursing, but by all staff that have been involved including the social worker, trial coordinators, home health and medical staff. This has been a joint effort where we have shown mutual problem solving, attentive reassurance, human respect, encouraging manner, basic human needs and appreciation of unique meanings.

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