1. Donnelly, Lillian A. RN, OCN

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HAVING WORKED with cancer patients in the hospital setting for 5 years, I felt competent to make the switch to home hospice nurse. But hospice nursing turned out to be more challenging than I'd ever imagined-because of patients like Jonathan.

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Six months into my hospice position, my supervisor called me into her office. "I have a new patient for you, a 35-year-old man with end-stage head and neck cancer and daily wound care. His name is Jonathan."


I was immediately apprehensive about the assignment because I knew from my hospital experience that patients with head and neck cancer can be severely disfigured. As I drove to Jonathan's home, my anxiety grew. I wasn't sure what to expect.


Defying expectations

Jonathan's home was located on the shoreline with a lovely view of the ocean. His mother Mary, 83, met me at the door and briskly ushered me into a small bungalow with large picture windows facing the ocean. Arranged neatly on the dining room table were bottles of medications and piles of medical supplies.


Then Jonathan walked into the room and shook my hand. Tall and thin, he was dressed stylishly. A white dressing covered the left side of his face, from below his eye to below his chin. Although he couldn't speak, intelligence sparkled from his eyes as he motioned for me to sit.


As Jonathan conversed with me by pencil and paper, it became obvious that he was in control of his care. He demonstrated to me how he used his feeding tube, then made a list of the supplies and medications he needed.


Jonathan was as self-directed in the rest of his life as he was in his healthcare. I learned that, with Mary's assistance, he continued to run the family retail business, commuting frequently to his office in the city while battling the cancer ravaging his body. This active businessman was not the hospice patient that I'd envisioned!!


Facing up to wound care

Next came the task that I'd dreaded. "May I see the wound and how you change the dressing?" I asked. In reply, Jonathan made it very clear that only he would be changing the dressing and that I wasn't expected to participate in his wound care.


While Mary and I followed, Jonathan led the way back through a short hallway to a bathroom. A large mirror hung over a vanity where all the dressing supplies were neatly arranged. Jonathan stood facing the mirror; I stood to his left for a better view of the wound. Mary positioned herself on his right side, ready to assist.


Jonathan and Mary washed and dried their hands, and put on gloves. Then he slowly and methodically removed the layers of the dressing until the whole area was uncovered.


The left part of Jonathan's face was totally missing, replaced by a cavernous opening. Horrified by the extent of the wound, I made a conscious effort to maintain a poker face so I wouldn't react inappropriately.


In a world where appearances seem to be everything and we all want to be one of the beautiful people, I could only imagine the heartache that this disfigurement must have caused Jonathan and his mother. What courage it took for them to allow me into their home and for him to continue to work in the public eye.


Jonathan redressed the wound with care and expertise, as he would at every visit for the next 3 months. During these visits, I'd assess the wound, change wound care, and order supplies as needed. I also coordinated nutritional, medical, and spiritual care with other members of Jonathan's hospice team.


As our acquaintance grew, Jonathan shared with me some of his life story. I admired his trophy from an Ironman Triathlon that he'd participated in only 18 months before. He revealed that he was a member of Mensa, the society for people with a high IQ, and he showed me his many baseball and track awards, testament to his athletic ability.


Guarded hope

Jonathan was researching an experimental chemotherapy treatment at a hospital in Baltimore and planning a trip to be evaluated for inclusion in a clinical trial. He wanted to pursue this prospect and would be leaving the hospice program if he was approved for this treatment.


I saw Jonathan a few days before he planned to leave for Baltimore. He was sitting in an armchair with The New York Times open before him, with a glint of hope in his eyes. As I wished him well on his trip, he lifted up his hand, gave me a thumbs-up, and blew me a kiss.


Sadly, Jonathan never made it to Baltimore. Several days after my last visit, he succumbed to an infection.


Deeper connections

Jonathan taught me that no hospice patient is "typical": they come in all ages and circumstances. He also showed me how to conquer my own apprehension and look past physical disfigurements to connect with the essence and spirit of my patients.


Although he's gone, I'll never forget the lessons he taught me about courage, strength, and hope in the face of adversity.