Pilot Work
To prepare for this grant, our research team reflected on interventions they had observed or engaged in with patients and families at the end of life in the ICU. These were myriad; dominant among them were events to bring closure (e.g., saying goodbyes, putting affairs in order – familial and financial), and rituals (e.g., songs and prayers). Traditional practices in the ICU include turning off alarms on the monitor and liberalizing visiting times. The scope of the 3 Wishes Demonstration Project will include but will extend far beyond these, focusing on 3 unique wishes of either or both of dying patients and their families. Two example patients are as follows:
The first patient was a 72 year old man who was conscious but dependent on mechanical ventilation due to amyotrophic lateral sclerosis. The patient’s hopes were to see his beloved dog, to get outside of the hospital, and to have a drink with his wife. Therefore, the 3 wishes were: 1) Pet therapy: the physician arranged for the patient’s dog to come to the hospital one afternoon; 2) Road trip: the respiratory therapist and nurse took the patient outside in the summer sunshine; and 3) Terminal toast: The patient’s wife brought in his favourite beer which they had on this last night.
The second patient was a 59 year old semi-conscious man, dependent on mechanical ventilation and 2 vasoactive infusions for septic shock. The family’s hopes were to celebrate his birthday, to play their father’s favourite music, and to help their overseas daughter say farewell. Therefore, the 3 wishes were: 1) Birthday cake: the bedside nurse bought a birthday cake which the patient’s partner cut and offered to the nurses, respiratory therapists and physicians in the ICU; 2) Music therapy: we invited 2 of the patient’s children to come in one evening with their guitars to sing their father’s special songs; and 3) The final goodbye: the physician called the patient’s daughter in Europe, who could not come, so that she could express her love and say her farewell on the telephone.
Since then, we conducted additional preparatory work, enrolling 15 patient-family units and 3 clinicians per patient (the ratio we propose for the future 3 Wishes Demonstration Project).
Some findings included 1) 100% response rate of clinicians to be interviewed; 2) 100% agreement of family members to be interviewed but a 1-3 month delay post mortem to allowing grieving; 3) 62% of the wishes are antemortem and 38% are post mortem; 4) inexpensive wish implementation (‘invaluable’ or zero costs to $200/patient-family); 5) very high quality of death and dying scores; and 6) universal endorsement to pursue this Demonstration Project.
Some methodologic decisions included 1) data collection (adding life support withdrawal timing, and streamlining other data collection); 2) interview timing (as soon as possible for clinicians, individualizing timing for families to ensure readiness to discuss the decedent); 3) interview guide modification; and 4) survey length (short Quality End of Life Questionnaire-10 Item to minimize response burden).
Also, our sense of purpose was renewed. We created a logo, a motto (‘Helping to make meaningful memories at the end of life’), tagline (‘the business of unfinished business’), credo and a website.
We presented this project at the ICU Quality Council, which is a multidisciplinary forum to guide, coordinate and oversee the planning, implementation and evaluation of critical care delivery with a quality improvement focus. The remit is to align best practices and health care delivery with the ICU vision statement, consistent with the hospital mission, ensuring that human and fiscal resources are optimized, and that care is holistically, safely administered.
We built a Wish Bank, collating previous ideas for future use.