The concept of goal concordant care began in palliative care. How does this model look in pediatric palliative care settings, and can you supply an example?
Dr. Vesel shared several examples of the use of goal concordant care throughout her palliative care career. These two stories she shares below highlight the importance of getting to know the family, patient, and understanding their values. When providers take the time to understand the needs and values of the patient and their families, they provide a safe and stable environment. This helps patients and families feel more in control of their situation.
In the neonatal ICU (Intensive Care Unit), a child was born with a very severe life-threatening genetic disease. This was a surprise to the family. When we retrieve their values, one value was having a healthy child, which was not meant to be, under those circumstances. But the second value was to minimize the suffering of any family members who have a critical illness. Based on those two important values, we did our best to allow this family to have meaningful experiences, but at the same time, concentrated on minimizing the suffering of their child. Those two values were at times conflicting but eventually they became congruent.
In the medical neuroscience ICU, we took care of a 94-year-old woman, who had a severe stroke and could not make decisions for herself. We were sitting there with her husband in his late nineties, a lovely gentleman, still in love with his wife of 69 years, and their daughter. Again, a very similar circumstance of retrieving the values that would be concordant with what the medical team was suggesting. They suggested withdrawal of life sustaining treatment. But there was conflict between the husband who clearly saw what was going on with his wife and did not want her to continue suffering, and the daughter who wanted to grasp onto the little bit of life that was still present in her mom. She had some unresolved issues in their relationship. We were able to process that over several days and eventually achieve their goal of allowing this woman, who had a very full wonderful life, to die peacefully.