Caring Competencies: Part 2. Relationships, Inside and Out

The core of human relationships is parent and child. No matter what else transpires in our lives, the bond between a parent and a child is the strongest possible. In the previous issue of the Nursing Administration Quarterly (NAQ), I shared with readers the bond between my daughter, Andrea, and me as we became one through her struggle with cancer of the esophagus. As I was her 24/7 caregiver for over 4 months, our special mother-daughter friendship, which we had throughout her life, was renewed in a way that no one could ever imagine, before she died July 8, 2007. In the previous issue I referred to the different behaviors exhibited by nurses either in support of nurturing and enabling patient/caregiver relationship to flourish or to separate and inhibit the parent from caring for the child.

Early in my nursing career, we used to bundle infants and only let the new mother touch the newborn as she was breast-feeding. Today, after research done by Reva Rubin, Kathryn Barnard, and others, we know that bonding with the infant and the mother is enhanced through touch and closeness to the mother, who is free to touch her infant and hold closely, unencumbered by swaddling blankets. Having breast-fed all 6 of my children, I know that miraculous bond felt between mother and child at infancy. We also have prohibited a parent from being with a child in an emergency department, even if the parent could help keep the child calm as stitches were being done for a laceration. We have made considerable progress in enabling family-centered care and bonding throughout the last few decades.

Now, as we explore these "caring" relationships, a critical look at nurses who inhibit rather than promote and enable the crucial parent-child relationship, when either the parent or the child is stricken with life-threatening illness, may help us engage in growth of caring competencies. An example of negative caring came when palliative care was initiated for my daughter, Andi, whose initial diagnosis of esophageal cancer was made through an endoscopy and biopsy, but she was not given the opportunity to have a positron emission tomographic (PET) scan to determine whether it was operable. The hospital where she had been admitted through the emergency department did not have either PET scan or thoracic surgery available. It was determined to initiate palliative care and discharge her with a tube-feeding and possibly schedule a PET scan later, as an ambulatory patient. Andi initially did not accept my participation as her mother/nurse and allowed herself to be discharged with bolus tube-feeding. This resulted in excruciating pain less than 24 hours later and emergency 911 to transport her back to that hospital, having been called by a neighbor who heard her screaming in pain.

During the next few days, a sigmoidascopic examination was done as I heard her screaming with pain as I sat in the waiting area. The doctor assured me that there was no bowel involvement, only fecal matter evident. (Ascites with obvious abdominal metastasis, proved otherwise as she was in terminal days after her many weeks of radiation and chemo treatment ordeal.) Then she was told by the oncologist that she would be discharged again to home care and an outpatient visit and possible PET scan would be done. Any nurse/mother would be outraged at this imbecilic, condescending approach to the treatment of her daughter.

Then I became involved in attempting to arrange for another medical center where all options were available. As I was contacting colleagues to determine where my dear Andrea could receive a definitive diagnosis and possible treatment, I was told by the palliative care team, other nurses, and doctors to stay out of her room as she was her own healthcare decision maker, age 47 (under heavy pain medication). These healthcare professionals did nothing but inhibit mother-daughter relationship. I stayed in the waiting room and continued arranging for appropriate care. See the previous issue of the NAQ for the accounting of the one nurse who understood and agreed that my daughter needed to be transferred to a major medical center where all options for treatment were available: Banner Good Samaritan Medical Center in Phoenix.

During the next 6 weeks of radiation and chemotherapy, the "inside" caring from nurses, doctors, and radiation staff was extremely sensitive caring and communicating with both Andi and me. Family members were welcomed into radiation daily as she was placed on the treatment table, whether inpatient or outpatient. We were made to feel part of the team and never set aside as intrusive or obstructive. A cot was placed in her room during her second round of chemotherapy, 96 hours, as I promised her I would be there with her, assisting nurses whenever needed, as her mother, not as her nurse, but most certainly a continuous patient advocate. In between hospitalizations, homecare was initiated.

As homecare nurses came to assist with tube-feedings and other essential care, including pain management, the "outside" caring competencies became evident. A clear example of positive, supportive caring came when a nurse managed to change the supply of tube-feeding to the same one used in the hospital as the initiating of a different kind of tube-feeding was not tolerated well. This nurse went out of her way to secure Jevity 1.5 prescription for Andi, while she was a homecare patient. During this time, Andi could not be left alone and would only accept a special close friend as a relief for me, so I was able to leave her home to return to my home for a 3-day Easter weekend. Occasionally one of her brothers or her boyfriend could relieve me for an overnight, but as she worsened, she asked me to promise never to leave her.

Family relationships sometimes can inhibit or help the individual in terminal illness and the Casa de la Luz Hospice, as an out-of-hospital care team, was essential caring competent assistance to us as we all struggled with our losing Andi. I am having an especially emotionally difficult time as the Hol- iday season approaches, but grieving and loss ses- sions with hospice help me express and share with others who have losses of loved ones. Holidays are a time of happiness, joy, and giving with family to- getherness. I am feeling extreme sadness and loss and cannot bring myself to be the matriarch of fam- ily holiday gatherings, so I will go to my brother's for Thanksgiving in San Diego. My brother has lost his only child, a son, at age 16, several years ago, and truly has understanding and caring.

I will return to ski Andi's favorite run in Winter Park, Colo, on Christmas Day. She and I celebrated Christmas there 2 years ago. My youngest son and his family will join me for a simpler time in the mountains, which we all love. A grandson, who is a junior in college, and his friends will come to ski with me over New Years. We have been skiing together since he was 3. Although my heart is so very sad and heavy, I know the Lord will continue to give me caring strength through nurturing and participating in past family activities.

How can you as nurses help yourself and others experience caring through comforting? Should you avoid the Holidays? No-just choose a different, simpler way and break from tradition. I may create a new ritual by skiing Andi's run, but we all have to set limits for ourselves to be able to continue caring. We can only do as much as we can emotionally and physically handle. I am not afraid to express my vulnerabilities and know my life has changed forever. I find it difficult to return to major nursing events or large social gatherings. Some family members are still in the anger stage, and even my disabled son is beginning to express feelings of his loss of a very caring and understanding sister. I will celebrate her life and special gifts of love with him before I leave for the Holidays and invite other family members, who seem not to want to return to the place where she died, my home. This is so very hard for me as 2 other sons live in southern Arizona and have not been to see me. "I just can't go where she died."

I am especially grateful for the response of readers and authors to make it possible to have a second issue about caring competencies and to guest editors, Lois Skillings and Phil Authier, who have continued to be responsible for this second issue: Caring Competencies: Part 2. Inside and Out. Please see the NAQ (32:1) for information about these wonderful caring nurse leaders. As the year 2008 meets us wherever we are, I ask you to celebrate the lives of loved ones continuously, whether lost through death or temporarily through distance and broken relationships, believe in yourself and the strength you give to others through your continuous caring.

Barbara J. Brown, EdD, RN, CNAA, FAAN, FNAP

Editor-in-Chief Nursing Administration Quarterly