Because of the complexity of both the medical and social situations of patients and long stays in hospital intensive care units (ICUs), gaps in communication, misunderstandings and a lack of consensus between families and health care providers about goals of care are frequent, and therefore, escalating costs, adding to the stress of difficult situations. And, on occasion, strained relationships can develop between families and the health care team.
"Disagreements not only occur between professionals and families, but also within the health care team," said lead investigator Barbara J. Daly, associate professor of nursing at Case and clinical ethics director at University Hospitals of Cleveland. "What is needed – in the best interest of patients and their families – is a simple yet comprehensive communication system that addresses decision-making with CCI patients."
That's why Daly and her research team are designing and testing a system that will address family decision-making with CCI patients, as well as provide the families comfort and support. The study, being conducted at University Hospitals of Cleveland and Cleveland's MetroHealth Medical Center with a $2 million grant from the National Institute for Nursing Research of the National Institutes of Health, implements an intensive communication system for the family of CCI patients on patient and family outcomes and resource use in ICUs of varying specialties.
So far, the research team has enrolled 58 families in the study. The team is currently observing and interviewing the families for the next two months.
The need for health care teams and families to be on the same page is critical, says Daly. Decisions to limit or withdraw aggressive treatments in dying patients are often delayed as families wait for the care team to raise the subject, as professionals wait for families to indicate they're ready for this discussion, and sometimes simply as a result of lack of clarity about who should be involved in decisions or when a meeting can occur, she adds.
"Families who do not choose to limit treatment in any way and who have a goal of survival, regardless of the quality of life of the patient, sometimes feel harassed as individual care team members repeatedly raise the topic of treatment limitation because they are unaware of previous discussions or disagree with the family's decision," Daly said.
Daly's team is training the doctors, nurse practitioners and other medical professionals in the intervention program, including raising the topics to be covered in each meeting, establishing goals, identifying clinical milestones and setting the timing for re-evaluation of the patient's condition.
The entire communication team would consist of family members, the doctor or surgeon, an advanced practice nurse (nurse practitioners or clinical nurse specialists), staff nurse, social worker and other professionals such as respiratory therapists, clergy or medical ethicists. A meeting with the family members would take place within 48 hours of the patient's admittance, with subsequent meetings with the family every three to seven days. Discussions are centered around medical facts (prognosis, treatment options); explicit reviews of the prognosis and the range of possible outcomes; the beginning of a discussion of the goals of the family; and a review of the communication plan.
The advance practice nurse would then act as the coordinator for the team, assuring that ongoing meetings are held as needed and that the discussions in the family meetings are communicated to the rest of the team.
"Families and health care providers have to have these regular conversations so the family's loved one will receive treatment that is not just technically excellent, but meaningful in terms of the values and preferences of that individual," Daly said. "The whole team has to ask themselves the question, 'What outcome would this person find acceptable?' If we can do a better job of being clear and consistent as a health care team, we can be more supportive of families facing these important, life-altering decisions."
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