There is no standard playbook for end-of-life care in the intensive care unit (ICU). Care of such patients tends to vary widely from one hospital to another, and it is not clear that patient preferences always drive those variations. In fact, ICU culture and clinician practice style may be more significant predictors of what happens in life-threatening situations, according to a recent study.
The study, published in the March 2015 JAMA Internal Medicine, looked specifically at patients who had documented do-not-resuscitate (DNR) orders or other limitations on aggressive life-sustaining treatments before being admitted to the ICUs of more than 100 academic and community hospitals over a 7-year period.
Of these patients with treatment limitations—which accounted for about 5% of all ICU admissions—nearly 25% received care that differed from their expressed wishes and, among those who died, more than 15% had received cardiopulmonary resuscitation (CPR). ICUs varied dramatically in how likely they were to provide new life-sustaining therapies to patients with treatment limitations—ranging from 6.0% of patients to 84.2% after adjustment.
The researchers could not identify any common denominators associated with the variations in care, such as geographic location (urban, suburban or rural) or type of hospital (academic, city/county, or community).
“Our findings show that even in this limited population of patients who have some similarity in terms of how much they want to use medical technology, there still is a great deal of variability across ICUs around the country,” said the study's lead author Joanna Hart, MD, a pulmonary and critical care specialist at the University of Pennsylvania in Philadelphia. “While we don't know for sure what's driving that variation, our study shows that the same patient receives very different care depending on where they go and who takes care of them.”
Nearly two-thirds of patients in the study survived and one-third of the survivors were discharged directly to home, suggesting that intensive care may be appropriate for patients with treatment limitations, said Dr. Hart. However, the variability among hospitals, combined with findings that many patients reversed their earlier treatment limitation decisions or received care seemingly in opposition to their preferences, suggests a need for better communication between the care team and patients' families.
“If patients have treatment limitations, my job is to understand who this patient is and how this family makes decisions,” said Rebecca Aslakson, MD, PhD, a critical care specialist at the Johns Hopkins School of Medicine in Baltimore, whose research focuses on the role of palliative care in the ICU. “It's not about what decision I would make, but helping patients and families make decisions that are aligned with their goals and values.”
In the heat of a crisis, it's understandable that some patients and families with DNR orders might change their minds about accepting aggressive interventions. However, the frequency with which this happens points to a need for better communication about the implications of ICU interventions, said Robert Goldszer, MD, FACP, chief medical officer at Mount Sinai Medical Center in Miami Beach, Fla.
Dr. Goldszer and his colleagues at Mount Sinai recently examined outcomes of 35 patients with DNR orders who were admitted to the hospital's ICU over a period of 18 months. The mortality rate was 46% among these patients, and of the 19 who survived, 9 were discharged to hospice and post-acute care. Many patients died following aggressive interventions, including 8 out of 15 who were intubated, 13 out of 19 who received vasopressor therapy, and 3 out of 4 who underwent hemodialysis.
“These patients had already discussed their end-of-life preferences and signed a document, so the question is why so many still went to the ICU and received aggressive treatment,” said Dr. Goldszer. “It suggests that physicians are not doing enough to inform patients about what DNR really means and explaining all of their options.”
Insufficient communication between patients, families, and physicians is a major problem, said Eric Siegal, MD, a hospitalist and director of the critical care service at Aurora St. Luke's Medical Center in Milwaukee, Wis. Even in the presence of documented DNR orders, physicians need to probe further about how families are interpreting patients' treatment preferences, while families need to understand how those orders will be carried out in the ICU.
“It's not uncommon for a patient with a blanket DNR order to decide, as we're talking, that he would accept being on a ventilator for a few days but not indefinitely,” said Dr. Siegal. “If you don't have that conversation and dig into what DNR really means to the patient or family members, you may have a very superficial understanding of what they want.”
Some patients are hesitant to consent to a DNR directive because they fear it will be extended more broadly to other life-sustaining measures in the ICU, a concern that may be justified in some cases, said Judith Nelson, MD, acting chief of the palliative medicine service at Memorial Sloan Kettering Cancer Center in New York and founder of the Improving Palliative Care in the ICU (IPAL-ICU) project.
“There needs to be a broader discussion about values and goals, not just about resuscitation preference, because DNR only means the patient would like to be allowed a natural death if they have an arrest,” she said. “When we extend DNR beyond that we are presuming to know how a patient feels about other aspects and goals of their care—and we don't unless we've talked to them.”
Integrating palliative care
Making sure those conversations happen is a central goal of palliative care, which many hospitals have integrated into intensive care practice. Some hospitals use a consultative model, where palliative care specialists are called in as needed, while others use an integrated model, in which palliative care principles and processes are incorporated into routine ICU practice, or a mixed model, where specialists are called in only on complex cases.
“I often start the conversation with a patient and/or family and if they have clear ideas about what they want, they may not need palliative care,” said Dr. Siegal. “If palliative care is indicated, I might handle the conversation myself or pull in palliative care if I'm too pressed for time.”
Dr. Nelson recommends offering palliative care to all critical care patients and their families, regardless of the individual circumstances.
“We often can't separate out patients who are clearly at the end of their lives from the ones who might survive,” she said. “You can be wrong in both directions.”
One of the barriers to integrating palliative care is resolving misperceptions among clinicians, patients, and families about what it means, said Dr. Nelson. That includes explaining that unlike hospice, which is meant for patients expected to live 6 months or less, palliative care is based on need, regardless of prognosis, and is offered concurrently with appropriate life-sustaining treatments.
“Palliative care is sometimes misperceived as a messenger of death, and some physicians are opposed to it because they think it means we're giving up,” said Dr. Siegal, whose hospital has a dedicated palliative care service. “But its real purpose is to help people make difficult decisions and transition from one phase of care to the next.”
Misperceptions can also undermine relationships when palliative care specialists are brought in to consult on complex cases, added Katherine Courtright, MD, senior fellow in pulmonary and critical care medicine at the University of Pennsylvania, whose research focuses on palliative care delivery models. There is sometimes fear that the specialists are there only to change the goals of care or push patients into hospice, she added.
“In the ICU, there often is a feeling that if a patient is admitted, they've bought into aggressive care and that precludes palliative care or end-of-life measures, when in fact, a model of concomitant palliative and curative care often works very well for patients, families, and clinicians,” she said.
Another important component is making sure that once the patient's choices have been elicited, they are clear to the whole health care team. Multidisciplinary rounds and team communication help, Dr. Goldszer said, but documentation can also be a useful tool.
“We can use the chart to document ‘CPR yes' or ‘CPR no’ clearly and succinctly in a dedicated space. But there needs to be a separate area to communicate more nuanced discussions of preferences for other life-sustaining therapies,” said Dr. Hart. “Documenting these 2 areas separately serves the additional purpose of forcing our conversations to be more preference-focused and gives us an area to translate those conversations into something to write down in the chart.”
Developing best practices
In talking to patients and families, clinicians can get bogged down in the details of the immediate care plan while neglecting the big picture, said Dr. Siegal. To avoid that problem, start by asking how patients would define a meaningful quality of life if they survive.
“We try to stay away from mechanistic questions, like whether they want vasopressors or dialysis,” said Dr. Siegal. “The bottom line is, for the misery we're going to put them through, will they get an outcome that is meaningful to them, and how hard are they willing to fight to get an incremental improvement? It's a constant risk-benefit calculation that has to be made by patients, families, and clinicians.”
Since ICU patients are often unable to speak for themselves, those conversations are often held with family members, said Dr. Hart, who serves on a Society of Critical Care Medicine task force charged with creating evidence-based practices for family-centered ICU care.
“The way we interact with family is vital to the care of the patient and our decision making,” she said. “It starts with being aware of how we present decisions to families, because the language we use can be a determining factor in what they decide.”
For example, patients and families are often asked on admission if they want to be “full code” and undergo all possible life-sustaining measures in the event of cardiac or respiratory arrest, she said. Rephrasing the question may help alleviate their distress and elicit a more informative answer.
“Instead of asking whether or not they want CPR, we should be asking what's important in their lives? What would the patient want to maintain as long as he or she is alive?” said Dr. Hart. “Based on those preferences, we can then recommend the most appropriate care.”
Palliative care consultations can also help families understand the implications of ICU treatments and survival after discharge, said Dr. Nelson. Often, ICU clinicians focus discussion on the immediate care being provided, but it's also important to plan for transition to home or another care setting.
“Some of the basic critical illnesses are becoming less mortal than they were 20 years ago, yet survivors may face ongoing impairments of function and cognition,” she said. “More and more, ICU palliative care will need to include helping patients and families prepare for this future.”
Improving end-of-life care in the ICU hinges on changing physicians' perceptions about what constitutes a successful outcome, said Dr. Siegal.
“I never say, ‘There is nothing more we can do,’” he said. “There may be nothing more we can do in terms of extending the patient's meaningful quality of life, but there are always things we can do to make sure they are comfortable before they die.”