Making a Difficult Conversation a Little Less Difficult

Gina GaspardIn her role as a Clinical Nurse Specialist with Fraser Health’s Residential Care and Assisted Living Program, Gina Gaspard became aware of a recurring concern. Nurses and doctors in residential care facilities work with residents in their final weeks of life, and in this difficult and emotional situation she heard them ask themselves if they could do more to ease the transition. Was the resident as comfortable as he or she could be? Could medication and care be more responsive? Was the family feeling supported and informed?

Gina invited a diverse group of care providers to discuss these issues. It turned out that even experienced health care providers wanted more support in this area, and were eager for resources. A working group was developed in May 2011 to create Caring for residents in final days: An actively dying protocol, a set of guidelines that provided resources like:

• Standardized medication orders that provide direction for the best medications to manage symptoms that may occur at end of life.
• A care plan that provides best practice recommendations to assist the health care team in meeting the changing needs of the resident and the family.
• A leaflet to share with families that helps to understand the symptoms their loved one may experience at the end of life.

Health care providers were supportive of the materials, and felt they offered the proactive steps and best practices in a user friendly format. But all agreed that family feedback was essential before moving forward.

“I felt strongly that we needed feedback from family members who had been through the experience of losing a loved one in a residential care setting. I wanted to know how the last weeks of a loved one’s life were handled, what helped them, or what could have helped,” said Gina. “But I struggled with the most considerate way to approach this issue. I didn’t want to evoke painful memories, or ask someone to revisit a painful time if they weren’t ready to do so.”

By partnering with the Patient Voices Network, Gina’s fears were put to rest. The request was sent to the Network with no obligation to participate, so patients stepped forward only if they were ready and willing to speak about their experiences. Bev Bakka, PVN outreach coordinator, also worked with Gina and the 12 patient partners to ensure sensitivity and provide emotional support if needed.

Gina was very impressed with the overall experience, and the quality of feedback provided by the volunteers. “The family members were so generous in sharing their stories and thoughts, and they brought diverse range of experiences. Their contributions directly affected our guidelines for working with families, and based on what they told us we made changes and added new information into the documents to better meet their needs.”

Gina told us about the leaflet the working group had proposed as part of the protocol, Preparing for the Death of a Loved One. Nurses felt it would be a good resource to begin an important conversation with families and provide them with meaningful information. But would families feel the same way? Was the information too much to absorb in a heightened emotional state? Was the tone appropriate?

Upon review, the families were unanimous in their endorsement of this resource. “They told us the leaflet really hit the mark and outlined the things they needed to know. With that feedback, our team felt really confident in providing this as a resource – and we continue hearing that it is helpful.”

The protocol is currently in the rollout phase, and will ultimately be extended to all residential care facilities in Fraser Health. Because of caring direct care workers, responsive management, and engaged families, this protocol will mean a better experience for both residents and families during one of the most important transitions of their lives.

Gina Gaspard