Coping with End of Life
The Daisy Project: Quality End-of-Life Care in a Residential Setting
Kiwanis Care Centre
The team at North Vancouver’s Kiwanis Care Centre believes that good quality end-of-life care should be seen from the perspectives of residents, relatives and staff, and that it should take into account an individual’s beliefs, values, and wishes. But, until recently, there were no specifications for how staff members should be trained to provide a palliative approach for their residents.
This meant that residents might feel less dignity after losing a sense of control, the capacity to communicate and adequate pain and symptom management. Perhaps they were needlessly spending their final hours or days in an emergency department or inpatient unit. Their families, friends and fellow residents were not being provided with time to say goodbye, and care team members grieved and dealt with emotions associated with patients’ unpredictable deaths. Expensive acute beds were needed because, without documented goals of care or discussions regarding declining health status, residents were often transferred to hospitals. Residents with dementia were particularly at risk of inappropriate hospital admission and increased stress and anxiety caused by an unfamiliar environment and care team.
Last year, a group of staff at the facility decided to improve end-of-life care for its residents. They named their initiative “the Daisy Project” and started by reviewing the charts of residents who had died at the facility over the previous 30 months. Results were similar to a 2008 report from the Canadian Institute for Health Information which found that, of the 79% of British Columbians aged 65 and up who had died between April 2003 and March 2004, only 15% had received palliative care. Health service use peaked in the final three-to-six months and too often the focus was on curing or treating disease rather than a patient’s emotional and physical well-being. And, while Kiwanis Care Centres’ residents who had been identified as palliative had fewer transfers to acute care and were also more likely to die in the facility, communication was often reactive and documentation was minimal.
So the Daisy Project’s interdisciplinary team got to work. Using the Lean A-3 problem solving method, it sought to understand the problem before trying to solve it. As the team gathered data and information, a clear plan began to develop. Four areas necessary for a consistent, reliable, palliative approach were identified and improved:
- All care providers were trained so they would have better knowledge and skills in providing the palliative approach and a certified course was developed for Care Aides.
- Residents who may benefit from palliative care are identified earlier in order to provide better quality-of-life, communication and time to plan for death.
- Communication regarding prognosis is honest, sensitive and timely in order to promote a more open approach to discussions of death and dying. Training for staff and family conferences provides a more supportive, holistic focus. Consistent, clear documentation plays a role: a simple daisy sticker on the spine of a resident’s chart identifies a palliative approach.
- Recognizing the emotional toll on family, care providers and fellow residents when someone dies, the project team designed a folder containing handouts, lists of counselling resources and websites offering advice and further resources. A Sacred Space (for prayer or meditation), a family guest room, and “Comfort Carts” encourage families to feel part of their loved ones’ journeys and participate in providing care. Trained, palliative volunteers now provide a listening ear and end-of-life vigils when residents do not have family members to sit with them.
A quarterly memorial service is held to assist in bereavement support, and the use of a “Daisy Template” allows care staff and residents to leave a final message to the resident who has died. A photo displayed with a lit candle or icon, and a dedicated time and place for a 1 minute silence, acknowledges the passing and provides permission for the grieving process, enabling the care team to support each other and any distressed residents. It is a time for sharing stories and memories and celebrating special relationships formed.
Now, nurses report that they have more time to concentrate on good symptom assessments and management. Residents’ journeys are predictable and planned. Residents, families and care providers have a clear understanding of what is important at end-of-life. Since the Daisy Project was implemented in January 2014, 34 residents have died, all of whom were identified and registered with the North Shore Palliative and Supportive Care Program (NSP&SCP). None of the residents were inappropriately transferred to acute care in the three months prior to their deaths. A total of 102 residents are now registered with the NSP&SCP and have documented plans and goals of care for end of life.
Residents openly mourn and talk about the friends they have lost, allowing staff to identify where extra support is required. Family and friends are provided with time to say goodbye rather than trying to make decisions or have meetings about medical decisions or funeral arrangements.
The Daisy Project’s framework has been designed to be easily applied in any residential facility. Approximately 150 care aides from three residential facilities on the North Shore have since received a certificate for completing the Daisy education and 28 nurses have taken part in communication training. The team plans on using its $2,500 sponsorship to create packages for other facilities so that a palliative approach can truly become embedded in long-term care.
At a Glance
End-of-Life Care Services in Fraser Lake