Lessons From the NICU: Caring for Cancer Caregivers When They Need It Most

Although studies show that patients with cancer would prefer to be cared for at home at the end of life, the majority still die in the hospital, many in intensive care. Despite this fact, much of the knowledge about supporting their families is drawn from research in the outpatient and hospice setting, leaving a gap in bereavement support for these caregivers when their loved one is hospitalized.

Knowing that parents of critically ill infants in the neonatal intensive care unit (NICU) receive a specific set of nursing-based supports, a team of nurses at UC Irvine Health in Huntington Beach, California, set out to find out whether lessons from the NICU can be applied in the inpatient oncology setting and developed an evidence-based protocol modeled on the NICU experience.

“The perinatal and OB world has had a protocol to follow in large centers to support parents who have lost a child,” based on a decades-long awareness that parents need nurses’ support during the time of a child’s death, noted lead author Deborah Boyle, MSN, RN, AOCNS, presenting the research at the 42nd Annual ONS Congress.

Boyle said that this support involves a number of interventions; for example, their chart is flagged and a plaque is placed outside the mother’s room acknowledging the loss, so that anyone who enters the room does so with sensitivity. In addition, nurses help to fill memory boxes to send home with the parents that include mementos from the baby, such as footprints, handprints, locks of hair and clothing/blankets.

“The protocol they use is very prescriptive in terms of the range of interventions that should be provided to these acutely grieving parents,” Boyle explained. “Parents are asked if they want to have time alone holding the baby; do you want pictures of the baby; do you want to help us bathe the child, dress the child?” Parents will have different comfort levels for the nature of the interventions, Boyle added, but this approach offers an array of supportive options.

For years, Boyle had an interest in translating best practice from this model in the adult oncology setting. When working at a hospital in Virginia earlier in her nursing career, she joined a social worker in running a group for families entitled “Good Grief”: “We asked the families what the nurses did for them at the time of death and what they would have wanted, if they had another chance to enact this experience?” The literature lacked evidence specifically focused on the nurse’s role in the acute care setting, she noted.

What Do Family Caregivers Need?

Based on hospice nursing literature and her own experience as a family caregiver in a hospice situation, Boyle and colleagues developed a 13-item survey for patients’ families to find out what families wanted and to help guide a new bereavement protocol for adult oncology inpatients.

Specially trained staff nurses interviewed individuals who had a family member die at their hospital, and interviews were also conducted with non-native English speakers (Korean, Vietnamese, and Spanish). Questions were framed around whether a nursing intervention was employed, and if not, would the families have wanted it, for example:

• Did the nursing staff offer you physical support (eg, hold your hand, embrace and sit with you)?
• Did the nurses ask if you wanted them in the room with you and your loved one or whether you wanted privacy?
• Did they encourage you to spend time with your loved one and say goodbye before they died?
• Did they explain to you what was happening during the dying process to help you understand what you were seeing?
• Did they respect your wishes and needs (eg, cultural and religious beliefs)?
• Did they voice concern over your wellbeing, such as encouraging you to take care of yourself?
• Did they offer you a chance to sit alone with, and care for, your loved one after they died, (ie, help the nurses care for your loved one’s body)?
• Did they send you a card to let you know they were thinking of you?

Nurses who had contact with patients at the end of life received the same survey. Boyle reported that a comparison of the results revealed “a discrepancy between what the families desired and what interventions the nurses considered helpful.”

“The nurses underestimated the importance of having us offer to pray with them, to ask them if they wanted to help with the final care of their loved one’s body, and they underestimated the importance of sending a sympathy card.”

Acute Family Bereavement Support Protocol

These findings set the stage for the team’s Acute Family Bereavement Support Protocol for acute care nurses at the bedside, including:

• Room signage
• Offering families a menu of support options (eg, desire for privacy, helping with the final nursing care after the loved one dies)
• A script to help the nurse share advice with family members about how to say goodbye
• Creating a memory keepsake, including, for example, taking a photograph of the patient’s hands
• Performing a post-death “honoring ceremony” (including essential oils)
• Helping to gather the patient’s belongings and escorting the family out of the hospital
• Establishing a process for signing and sending a sympathy card one month later

The timing for implementing the interventions was at the discretion of the nurse, depending on the patient’s status; social work and spiritual services also were consulted. Relatively simple steps, Boyle said, like protecting privacy by keeping the door shut, ensuring enough chairs are in the room, and providing a parking pass the day the patient died, also were part of the intervention.

“There are many, many options for supporting families,” Boyle stressed.

Study authors reported in their abstract that the project is in the pilot phase of implementation. The research team plans to call 20 family members for their evaluation of the intervention, but that, “preliminary results have been overwhelmingly positive.”