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Posted By: Tracey M. Piparo, PA-C
June 27, 2022
"We don't want to lose hope or let Mom think we don't believe she'll get better." For palliative care providers like myself, this is a common sentiment. But what happens when you hear this as a primary care or other specialty provider? How can you respond while still maintaining the trust of your patient and their family?
Hope—a feeling of expectation and desire for a certain thing to happen—can be a wonderful thing, a comforting feeling, and something that connects individuals, especially in the world of serious illness. While I would never want to take that away from a patient, it is important to structure conversations in a way that tempers that hope with reality: "I will always hold space for hope with you, but we need to have a plan for several possibilities." Honesty about the possibility of having to change the focus of our hope is what I find to be most important. We never stop hoping, but sometimes what we are hoping for changes. Other times, our hope simply needs to be directed with reality. That reality includes preparing for predictable scenarios and having a plan B or even a plan C.
Very often, patients and families are "in the weeds" and can only see what is in front of them, what has been presented to them by their care team. That is why it is our responsibility as members of the care team to be honest and aware of our own biases and limitations. This allows for the building of trust and faith in the relationships we form with patients and their families.
How would this be practically implemented? Here's an example: Adelaide is a 76-year-old female admitted to your medicine service for her third heart failure with reduced ejection fraction exacerbation this year. She is now requiring increased diuretic doses, blood pressure support medications, and her renal function is precipitously worsening. Her past 2 admissions followed a similar pattern but she was able to be discharged upon recovery. This outcome is what the patient and family hope for, however, we know that this time, things are different—things are worse or have the potential to worsen quickly. Tempering hope with reality in this situation would include having a conversation about goals of care and code status, holding space for the patient to express her feelings, and reminding her that these decisions do not affect her current level of care—rather it is a plan to prepare for potential changes while she is able to share her voice.
I often tell patients and families, "the gift of a voice is precious, use your voice and give your loved ones the permission to honor your wishes." The ability to open these conversations can impact your patient relationships, outcomes, and your overall wellness as a provider.