Getting to know your patients, does it really make a difference?

[bmars452, DNP, RN]

Cancer care is a never ending roller coaster of emotions. With every patient there is a story to uncover, an individual background that made them who they are. Catering to the individual and their unique situation is key when caring for patients with a possible terminal illness. All too often they are left feeling like they are their disease and everything revolves around that.

As a post-transplant coordinator in the Blood and Marrow Transplant program, I strive to get to know my patients and their families on a personal level. I want to be able to connect with them, so that I can understand their frustrations, concerns, joys and sadness. Getting to know patients and their family members makes an impact on them that last longer than anything else you can offer them.

Strong relationships with patients can make a huge impact on their outcomes. Over the last year, I had the pleasure of taking care of many patients. One patient in particular, I became very close with and was able to use that relationship to guide him through treatment.

This patient, like many others, was diagnosed at an outside facility and transferred to KU for treatment. He spent a month in the hospital getting treatment, but when he was discharge was still faced with months of chemotherapy. When I first met him, I could tell he was anxious. His mother, who accompanied him to every appointment, was also noticeably anxious and concerned. They wanted to go home, they wanted to stay in their own houses and sleep in their own beds. However, they were from a small town and were not confident in the care they would get outside of KU.

I worked with the local hospital, their hematology team and treatment clinic and arranged for the patient to transfer his care locally and continue treatment closer to home. I sent education to the nurses locally regarding PICC line care and dressing changes. I also worked with our pharmacist to gather education regarding the chemotherapy the patient would be receiving and provided the local clinic with everything they would need to know to continue his care. Lastly, I worked with our financial coordinators to juggle the patients insurance and get coverage for him to receive treatment in our clinic, as well as his local clinic.

Although they were both still anxious, I was able to convince them to continue treatment locally, with monthly follow ups in our clinic. This plan was much more manageable than coming every 2 weeks and having to stay in a hotel downtown.

For the next three months, the patient continued treatment with a local hematologist and came to our clinic monthly. Depending on the timing of the monthly visit, I would arrange for the patient to receive one day of treatment with our clinic, so he did not miss a dose. Like with most treatments, we hit several hiccups along the way. He called our clinic one day to tell me that he had been seen in the local emergency room the night before for extreme back pain. The pain was not resolving and the patient was very concerned. After discussing this with our provider, I advised the patient to come to our clinic to be assessed. We found nothing conclusive on his imaging or lab reports, but just being able to assess him and talk to him helped to calm his and his mother's worries.

Over the next month his back pain continued. He called the clinic almost daily, sometimes in tears, always asking for me. He wanted to quit. He did not want any more chemotherapy, he did not want to go to clinic, he just wanted it all to stop. Sometimes his mother would call because he was so miserable he didn't even have the energy to talk on the phone. Because of the relationship we had developed, I was able to talk to both of them and calm their worries. I convinced him to continue treatment. We discussed the lack of research regarding early discontinuation of treatment, and that this would not last forever, there was a light at the end of the tunnel.

His last dose of chemotherapy was given in our clinic the last week of July. He is now home, working and living his life with very little side effects. I was there to see him off on his last day. That day was filled with lots of hugs, laughs and joyful tears. As they were both walking out, he and his mother told me how much it meant to them that I took the time to get to know them, talk to them and most importantly, listen. They told me they loved me and would never forget that.

He continues to follow up in our clinic, just for observation. He calls the clinic to check in and when he has questions, but is overall back to his normal life.

All of this to say, what nurses do, what I do, really does matter. Taking the time to get to know patients and their families, not looking at them as a "cancer patient" but as a son, brother, coach, it really matters. Not every patient is like this, and not every patient will tell you the impact you made, but it still matters.

[Munch]

Being on both sides of the equation(I was never a patient but my beloved father was) I really appreciate this piece of writing. Everything you touched on is so true I can't even count how many times I've been on both the receiving side of nurse and cancer staff care and the giving side.

When I was in my teens my beloved father was diagnosed with stage IV pancreatic cancer. Any health care professional worth their salt knows that pancreatic cancer is pretty much an automatic death sentence(I don't care what the commercials for cancer treatment centers of America say). Anyway my father was on hospice care at home and I was in such denial I refused to acknowledge my father was dying. Looking back on it I really feel like he really was going to pull through. My dads nurse at home that administered his pain and nausea meds did the most compassionate and helpful thing anyone could have done for me. It was summer vacation from school so I was home a lot and interacted a lot with my dads nurses and caregivers. But she had the decency and kindness to sit me down and give it to me straight. I kept saying "he's going to live, he's an unsinkable ship, if anyone can pull through this its my dad..he's not leaving me." To which she sat down with me, took my hand and said "no honey..your dad is going to pass..its not a matter of if..its when, no one survives the type of cancer he has..no one and if they do they are in textbooks." She didn't do this to be cruel but she knew I was old enough and mature enough to handle it and she didn't want me to be caught off guard when he did die. I thank her everyday for that..her compassion and the greatest gift of all..I was able to tell my dad goodbye and how much I loved him and would miss him. My dad died about 10 days after we had that sit down. I handled myself pretty well all things considered.

Now fast forward some 10 years and I am working my second nursing job in a cancer hospital. I worked the inpatient floor. I absolutely loved that job. It was such an honor to care for those genuinely ill patients. Most of them were post-op patients or admitted for complications from the cancer and the chemo/radition. A couple were admitted for the actual treatment itself(most of that was done outpatient in our clinic but some chemo drugs require continuous monitoring or medications when administered)...and some patients unfortunately were on the floor in the end stages actively dying. I loved to go sit with my couple of imsomniac patients that despite benadryl and or Ambien were always wide awake come 1am..many times you could find me drinking tea or eating an ice pop watching TV with these patients. I can't even tell you..we had a freezer filled to the brim with those generic ice pops that come in red, purple and orange. Those patients loved my company and they needed a lot more than medications to manage their side effects which don't get me wrong is very important too. So many times the sores from the mucositis were excruciating that even eating an ice pop without a shot of morphine was a feat.

Patients families were also so grateful for the care I provided. Though to me it seemed like not a big deal I can't tell you how many times a relative or patient would make a special trip to see me to tell me thank you. Watching TV with someone like it was a Friday night movie night at home was something that was so not a big deal to me..but to the patient at that moment it was everything to them.

I left that job after I had some health issues of my own(not cancer thankfully). Honestly it probably was a job that hit too close too home for me with my father and shortly after that my grandfather and uncle that all passed from cancer. But after I went back to work I got a better paying position somewhere else. But I will never forget my patients and how wonderful they all were in spite of such a bad diagnosis. I'm glad I got to touch their lives...even though I didn't get to do it for all that long.