Experiencing the complex healthcare environment firsthand has been the most devastating, complicated, and exhausting endeavor in my entire nursing career of more than 50~years. As many are aware, on July 8, 2007, I lost my dearest daughter, Andrea Lynne Brown, age 47, to a 4-month battle with stage 4, squamous cell cancer of the esophagus. The Lord blessed me in so many ways, but most especially, with the gift of being a nurse and having the ability to be 24/7 caregiver for my daughter. This "caring" was the most difficult but, at the same time, the most rewarding nursing of my entire career. Andi taught me so much more about "caring" and that competencies extend far beyond the act of giving care.
When I was caring for my father at his home 38 years ago, as he was dying from lung cancer, I knew that my love transcended all the heartache and disbelief of losing him at age 60. My grandmother, mother of 13 children, was overwhelmed and heartbroken at the loss of her eldest son, and I thought I understood her loss, because he was my great loss, too. My youngest son was only 2 and my 6 children lost a very special "Santa" grandfather.
Now, losing my daughter Andi, the third of my 6 children, took on a whole different meaning of love, peace, and becoming one as she went through the horrendous chemotherapy regimes and 6 weeks of radiation at Banner Good Samaritan Medical Center, Phoenix, Ariz. Before entering Good Samaritan, she had been admitted for a second time through emergency room (ER) in a community hospital. She was placed in palliative care and went through unbelievable mismanagement with little hope of differential diagnosis and treatment. What is a mother, who is a nurse, to do when the healthcare providers told me "to leave her room, she was 47 and could determine her own direction for care"? Call colleagues and friends and try to get her transferred to a hospital where a positron emission tomography (PET) scan could be done and possible treatment be initiated.
I doubt if most nurses would consider that a dear boyfriend told Andi: If my Corvette needed repairs and I took it to a garage where the equipment and mechanics did not know how to fix it, what would I do? Andi responded: "Take it to a different garage where they had the right tools and mechanics." Her friend said: "You need a different garage. Ask for a transfer." The next day she was transferred. I reflect on the past year or more, when she sought help from gastroenterologists and other physicians for her gastric reflex disease and nothing was done to diagnose the cause of her continued symptoms of esophageal cancer until it was too late.
Over a month earlier, we had spent a day together at a golf tournament in Scottsdale, Ariz and I told her she needed a diagnostic workup and possibly could have a hiatal hernia. What did I know? Now I know that so many younger people are dying from this silent cancer killer because no one considers the precursor signs and symptoms of gastric reflex disease. She did enter that community hospital ER after I was with her and was told she had a viral infection and given antibiotics. A month later she could not swallow and went back to that ER and an endoscopy was done, revealing squamous cell cancer of the esophagus with the tumor blocking the entrance to her stomach. That was March 2, 2007, and her journey of experiencing the "Caring Competencies in a Complex Healthcare Environment" began.
Caring includes knowing how to ascertain, through a case manager, what the existing health insurance is and if a provider will take the patient to be able to transfer to an appropriate facility. While I was asked to not enter her room at the community hospital, as I was upset at their management of her "care," I called my network of colleagues and all was arranged, so when she pushed the nurse call button and asked for a transfer, her boyfriend had all the information necessary to expedite the transfer. Thus began our journey through chemo and radiation and an increasing bonding that one could never imagine between a mother and a daughter. Like most, we had had our ups and downs, but now I pledged to her I would never leave her through the treatment ahead. During her second round of chemo I stayed with her at the hospital and everyone there made me feel a part of the caring team. She received her last radiation on May 16 and I took her to my home in Saddlebrooke, Ariz, to recover, rest, and have 24-hour nursing care from me.
Andi had been Engage Life Director for Atria Senior Living Group in Chandler and previously taught dance, gymnastics, and water aerobics to all age groups in Sierra Vista, Ariz, for over 10~years. She wrote a fitness column for a nursing magazine. How could this be happening to her? We returned to Phoenix for her appointment with her medical oncologist in early June, but came back to my home, where the hot summer temperature control was much better than at the home she and I had in Chandler, Ariz. Physical caring included gastric tube delivery of all medications, jejunal tube feeding using a Kangaroo pump with Jevity 1.5, and monitoring and giving pain medications with a Duragesic fentynyl patch of 125 to 175 [mu]g q 72 hours and supplemental morphine sulfate 0.5 to 2 mL per tube q 4 h prn. The several medications per tube required refill and not until I went to have them refilled was I aware that her insurance had been cancelled on May 25 (the last day of her job was March 1 when she went to that ER in severe pain, but her work time was extended with PPO and sick leave). Now what was I to do with more than $500.00 alone for those medicines?
I know we do not think of finances as a part of caring competencies, but they are. After several phone calls, overnight mail applications and faxes, her COBRA application was initiated. There also were almost 50 unopened envelopes revealing copays not made, other expenses and reports needed to continue caring. A week later, all was caught up with legal power of attorney over financial matters to do her banking. This is a difficult caring competency under the hardest of circumstances. As her condition deteriorated revealing metastasis, I, being a mother/nurse, could not count on my assessment, so I called another colleague, Donna Behler McArthur, APRN, to examine her. I was unfortunately right and the need to call in Hospice was evident. Still no insurance clearance. The next day COBRA clearance came at the right time so 100% hospice coverage enabled hospital bed, walker, wheelchair, oxygen, bedside commode, and table to be brought in to replace conventional furniture in my home for Andi. All supplies and medications were brought to my home so I could care for Andi without leaving.
Now another part of "caring" is the supportive caring of family and dear friends, some of whom learned how to manage her tube feedings so I could have an overnight relief while in Chandler. Most could not handle the buckets of vomiting and diarrhea, after the chemotherapy, so the complexity of care was a continuous nursing challenge. Even home care nurses were not as familiar with using Coca-Cola to unplug tube feedings, which was a difficult maintenance aspect of care. Driving her to and from radiation on the busy, hectic freeways of Phoenix was a daily "caring" when she was at home. We can have all the caring theories and use them very effectively as we teach and practice nursing, but the hard experiential reality has led me to a more complete understanding of the competencies a family needs to provide care to their loved one who is in the complex healthcare environment.
This issue of NAQ has come at the time I am desperately trying to come to grips with the loss of my daughter after an overwhelming 4 months of hope and praying that the caring would work and she would survive. Such is not the case and all I can do is ask friends and family to help prevent the loss of others to esophageal cancer by supporting the Andi Brown Esophageal Cancer Awareness fund at Banner Health Foundation, 2025 N Third St Suite 250, Phoenix, AZ 85004. Having an issue of NAQ devoted to Caring Competencies in a Complex Healthcare Environment has been due to the board leadership of Phil Authier and Lois Skillings, who have accepted the responsibility of being guest editors for this issue.
Philip D. Authier, MPH, RN, is a partner in Edgework Institute of Grand Rapids, Mich, a consulting company focusing on making a difference in the world. Phil is also past president of the American Organization of Nurse Executives and has more than 25 years of professional nursing experience in leadership ranging from small to mid-size acute care facilities working with rural clinics, critical access hospitals, and skilled nursing facilities. He is past CNO of St Mary's Healthcare Center in Pierre, SD.
In his position with Edgework Institute, he works with groups and individuals to reignite the passion of caregivers. Helping people connect "who they are" to their passion through conversations of intent and self-care is a way of reconnecting life allowing them to see and value what is truly important.
Lois N. Skillings, RN, MS, CNAA, BC, is Vice President of Nursing and Patient Care Services at Mid Coast Hospital, a position she has held for the past 12 years. In this role, she is responsible as the chief nursing officer for providing vision and leadership to nursing services for a community-based hospital, home care, and long-term care continuum. Lois is past president of OMNE, Nursing Leaders of Maine, and is an established author and speaker on the subjects of patient safety and quality, nursing leadership and management, communication and relationships.
Relationships comprise one of the most complex caring competencies in our healthcare environment. Oftentimes we think of nurse-physician relationships and nurse-nurse or nurse-patient and even our administrative complexities with political savvy needed. But, the most meaningful and, therefore, of essence in caring are our parent-child relationships and the work of nurses to either nurture or diminish that core of human spirit. The nurses at the community hospital had little regard for that core relationship of caring between me and my daughter, except for one. When I asked her what she would do were she in my situation wanting my daughter to be transferred to where proper treatment could be done, she replied, having 3 little daughters, that she would do what I was doing: make a fuss and get her daughter out of there.
Frequently we overlook the meaningfulness of extended family and friends in caring. I am so very blessed to have neighbors and friends who volunteered to be with Andi so I could run errands and continue with some semblance of daily living while devoting almost every minute of each day to caring for her. We joked, laughed, and cried together. We even had a few fights, but then easily made up and she would say: "You have to be firm, Mom." Her fighting spirit and sense of humor never left her.
Spiritual caring leads to acceptance, quiet acquiescence, and a sense of peacefulness in caring that envelops each person in warmth and meaningful conversation. Andi's request to see a priest led to a few visits of priests from the church I belong to and one that she visited with me in the past. She felt she was ready after receiving anointment twice, communion together with me, and said confession a week before she died. She asked: "When am I going, Mom?" I said where, thinking it was for another PET scan, and she answered: "When am I going to die?" I told her only the Lord knows and we have time to be together as all family would be coming. Another time she said she heard a little girl calling. I asked: "Who is the little girl calling?" She replied: "Jesus." I asked the little girl's name. She said: "Me, Mom." One of her final thoughts was she was taking a trip to the moon but I could not join her yet. On the last day she called: "Mom," her last word spoken, and as I read the book of Psalms to her all day, I chose to read the 23rd Psalm at her services, as well as a few other passages relating to dance, confession, and anointment. I knew she was ready to leave this world and so was I ready to have her out of pain and suffering. But she waited until her brother came, and then left, as we both were with her, and the rest of her siblings and her father were gathered in my home. I thank the Casa de la Luz Hospice for helping me be able to care for Andi in my home until she died.
Barbara J. Brown, EdD, RN, CNAA, FAAN, FNAP
Editor-in-Chief, Nursing Administration Quarterly