The elderly man is restrained in the bed as he continues to pull at his IV and nasogastric tube. He is delirious and slowly recovering from sepsis and respiratory failure, having just been extubated the day prior. He is adamantly requesting to leave the hospital now. The patient’s wife is attempting to console him. She looks at you plaintively, “There is no way that I can care for him like this doctor. What on Earth am I supposed to do now?” As a palliative care physician who spends much of my time in intensive care units (ICU) and on hospital wards, this is a frequent scenario that I encounter: having a patient who was critically ill, where family may have been told the patient will not survive; traumatic events were witnessed, but now the patient is recovering and the family is asked to assist with disposition and caregiving outside of the hospital.
As Sevin et al demonstrate, the healthcare system places a significant burden on the family members of patients admitted to the ICU.1 A large majority of these patients are incapacitated due to their illness, and so their loved ones are asked to participate in creation of treatment plans, acting as surrogate decision makers who may or may not understand much about their illness or much about the patient’s wishes and values surrounding healthcare. And many individuals note feeling unprepared for this role. Su et al summarized several of the struggles surrogate decision makers face, including feelings of reluctance, seeking reassurance from alternative sources of information, communication with health professionals, and absence of wishes as documented in advance directives.2 So now there exists a situation where a family member is making decisions based on an incomplete understanding of the patient and, as Leonard et al illustrate in their article in this issue of Baylor University Medical Center Proceedings, an incomplete understanding of the medical reality.3 This is the perfect recipe for caregiver burden and burnout. As Table 2 in that article shows, the family members’ perceived burden increased as their knowledge decreased.
I especially appreciate the clinical implications of the current article. If we as clinicians can improve how we deliver information and how we assess the families’ understanding, then we hopefully can improve their perceived level of burden and improve their quality of life and ability to care for their patient. There are many validated communication frameworks that motivated clinicians can learn and practice to improve these skills.
As we step into these often difficult situations, it’s important to remember that in a room with a patient in a bed, surrounded by four worried family members, we are caring for five individuals and not just one.
—Jason Kirk, MD
Department of Palliative Care, Baylor Scott & White Health Medical Center –Temple, Temple, Texas, USA
Jason.kirk@bswhealth.org
http://orcid.org/0009-0009-5057-1526
References
- 1.Sevin CM, Boehm LM, Hibbert E, et al. Optimizing critical illness recovery: perspectives and solutions from the caregivers of ICU survivors. Crit Care Explor. 2021;3(5):e0420. doi: 10.1097/CCE.0000000000000420. [DOI] [PMC free article] [PubMed] [Google Scholar]
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