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Improving End-of-Life care in the ICU

[The following article appeared in the January 2016 issue of ACP Hospitalist]


Outcomes—whether life or death—should better reflect goals and values of patients, experts say

By Janet Colwell

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.

Photo by Thinkstock

Photo by Thinkstock


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.”

Communication lacking

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.”


Barriers to integrating palliative and critical care

  • Unrealistic expectations for intensive care therapies on the part of patients, families, and clinicians.
  • Misperception of palliative care and critical care as mutually exclusive or sequential rather than complementary and concurrent approaches.
  • Conflation of palliative care with end-of-life or hospice care.
  • Concern that incorporation of palliative care will hasten death.
  • Insufficient training of clinicians in communication and other necessary skills to provide high-quality palliative care.
  • Competing demands on ICU clinician effort, without adequate reward for palliative care excellence.
  • Failure to apply effective approaches for system or culture change to improve palliative care.

Source: Aslakson RA, Curtis JR, Nelson JE. The changing role of palliative care in the ICU. Crit Care Med. 


Building New Systems for Stroke Care

ACPH logoHow Should Hospitals Respond to Updated AHA Guidelines on Endovascular Therapy For Stroke?

New findings about stroke therapy prompted the American Heart Association to update its clinical guidelines late last year. The AHA/ASA called for hospitals to develop regional networks to ensure that qualifying stroke patients have rapid access to endovascular therapy following severe stroke. Some larger hospitals already have such systems in place but putting the necessary infrastructure in place will be a challenge for many smaller community hospitals.

I reported on the development for ACP Hospitalist magazine. Following is an excerpt from that article, in which I interviewed leading stroke care experts about how hospitals should respond to the new guidelines. They provide some important insight into the logistical and cost implications of delivering this type of care.

You can read the full article on the ACP Hospitalst website, but here are some of key points:

  • The updated guidelines are based on 5 studies—MR CLEAN, ESCAPE, EXTEND-IA, SWIFT PRIME, and REVASCAT. While earlier trials had failed to report any significant benefit of ET over standard care with intravenous tPA, these studies achieved betteStroke image MRIr results by using advanced imaging to select patients and retrievable stents to remove clots.
  • The studies emphasize the importance of using advanced imaging techniques, including CT angiography (CTA) and magnetic resonance angiography (MRA), in the initial assessment of stroke patients. The tests provide a more detailed view of blood vessels than non-contrast CT, allowing physicians to assess whether a patient has enough salvageable brain tissue to benefit from reperfusion.
  • Timing is tricky: According to David Likosky, MD, director of the stroke and neurohospitalist programs at EvergreenHealth Medical Center in Kirkland, Wash.: “You have to be careful not to divert patients too far away, considering that the bulk of patients are not candidates for endovascular therapy and would benefit more from faster access to IV tPA. At the same time, picking the right patients for ET and transporting them as quickly as possible has huge potential benefit.”
  • Strategies being developed at stroke centers include: Telemedicine units that link ambulances with ED physicians via television monitors (see this recent study in JAMA Neurology); mobile stroke units  with advanced imaging and a specialist on board (see my previous article that discusses this model); Telestroke networks where specialists at major stroke centers assist ED physicians at a network of smaller hospitals in evaluating stroke patients via telemedicine connections.
  • Continue to prioritize tPA: “All patients with ischemic stroke should get tPA while you are making plans about whether they also need embolectomy,” says S. Andrew Josephson, MD, medical director of inpatient neurology and head of the neurohospitalist program at the University of California San Francisco. “The best way to maximize resources and minimize transfers is for all hospitals to also perform rapid vessel imaging to identify patients who might be eligible for endovascular therapy.”
  • The new emphasis on endovascular care is likely to increase demand for hospitalists at both smaller and larger centers.

Always Trust A Mother’s Hunch: My Experience With a Sick Baby and an Untrusting Doctor

A recent post on caught my eye. The piece was written by Niran S. Al-Agba, MD, a pediatrician, who was reflecting on a distressing moment during her third year of residency. On a busy night in the hospital, a mother requested a re-do of her 6-year-old daughter’s blood work, which had come back normal the previous day. Al-Agba ordered the new test at the advice of her attending but remembers feeling like the mother was being overprotective. Exhausted, she wasn’t feeling very compassionate that night.

However, the mother’s hunch that something wasn’t right proved correct. The lab had missed something in the first test and the girl actually had leukemia. Al-Agba, understandably shaken, returned to her patient to break the bad news.mother child-1298137_1280

“It was during this trying time I learned one of the most important lessons of my career: the value of trusting a mother’s intuition,” she writes.

That really struck a chord in me, and triggered a memory of an experience I had years ago after the birth of my youngest son. I was living in San Francisco at the time and my son was barely a month old. When he started vomiting after eating, I recognized the signs immediately: pyloric stenosis. My oldest son, then 5, had experienced the same symptoms and underwent surgery to fix the problem when he was 6 weeks old. The condition was in my husband’s family; his brother had the same thing 30-plus years earlier.

Pyloric stenosis is a narrowing of the opening leading from the stomach to the small intestine. The enlarged muscle surrounding that opening prevents normal digestion and often leads to projectile vomiting. It is sometimes hereditary and usually develops in boys in the first couple months of life. Surgery involves making a small incision in the enlarged muscle so food can empty into the intestine. While it’s traumatic to witness your newborn undergoing surgery, the procedure is almost always successful nowadays and resolves the problem permanently. But it has to be diagnosed and treated right away.

The whole experience was fresh in my mind when I went to the doctor with my youngest to get a diagnosis. My husband was away at the time and I had my other son in tow. Like any new mother, I was sleep deprived–perhaps more so due to dealing with the vomiting. I explained the issue to the doctor on duty, including the genetic link, but her response was noncommittal. “Babies spit up,” she said. “This could be just normal spitting up. Why don’t you try ipecac and come back in a few days if it gets worse.”

Her attitude infuriated me. I felt patronized and dismissed. I knew the difference between spitting up and projectile vomiting–babies with intact digestive systems don’t project the contents of their stomach halfway across the room, landing with a loud splat against the wall. Plus, I had been through this before.  The doctor wouldn’t budge, though, seeming to regard me as another overanxious new mother. So I asked to see another doctor. I was, she reluctantly admitted, entitled to a second opinion.

The upshot is that my son received the diagnosis and was admitted to the hospital the same day. (Remembering the sight of his tiny body hooked up to IVs and the sound of his desperate cries still makes me feel physically ill, but it all worked out in the end). I know now that this doctor was probably just young, and perhaps in a similar state of exhaustion as Al-Agba during her residency. But I’ve never forgotten the experience and it has colored my interactions with doctors to this day.

What I learned that day was to trust my instincts, ask questions, and demand answers. While I’ve encountered some thoughtful, intelligent physicians over the years, I believe that taking care of my health is ultimately up to me. I do my research and seek out facts. The doctor’s opinion is one voice of authority to be weighed along with others.


My sons: all grown up.

So, when something “just doesn’t seem right” about my children or me, I pay attention to that gut feeling and tell my physician in a spirit of shared decision making. That shouldn’t undercut the knowledge and expertise of my doctor but actually help him or her make a correct diagnosis. Isn’t that what patient-centered care and shared decision making–those frequent buzz words in medicine–are all about? Reflecting on her experience that day, Al-Agba says she learned the “importance of listening to the person who knows their child best, their parent.” I couldn’t agree more.

Tools to Help Hospitalists Spot Delirium

An excerpt of my article from the March ACP Hospitalist:

Delirium is common among older hospitalized patients and can lead to poor outcomes. HoweACPH delirium coverver, the condition is often missed during rushed morning rounds. Patients may seem simply sleepy or physicians might catch them in a good moment, despite fluctuating periods of delirium.
The 10-item Confusion Assessment Method (CAM) is often recommended for diagnosing delirium, but although a recently validated short version, the 3D-CAM, takes only 3 minutes to administer, even this may be too time-consuming for busy hospital practice.

“One of our challenges as hospitalists is that the methods of diagnosing and validating delirium in research trials don’t work very well in daily practice,” said Ethan Cumbler, MD, FACP, medical director of the Acute Care for the Elderly service at the University of Colorado Hospital in Aurora. “In general we don’t have 30 minutes to complete a dedicated cognitive assessment, so what practicing hospitalists really need is a rapid assessment tool.”

Recently developed screening tools that can be administered quickly at the bedside have the potential to provide that. A 2-item tool that asks patients to name the months of the year backwards and the day of the week, for example, accurately identified 93% of delirium cases in a study published in the October 2015 Journal of Hospital Medicine (JHM).

More user-friendly screening tools may encourage clinicians to routinely screen for delirium and raise awareness about the signs and symptoms, which include inattention, disorganized thinking, and altered level of consciousness. However, experts caution that every test has both advantages and limitations.

“When there is limited time, a brief assessment makes sense, but realize that you may sacrifice some diagnostic accuracy,” said Jin H. Han, MD, MSc, associate professor of emergency medicine at Vanderbilt University in Nashville, Tenn., who studies delirium. “These newer brief methods are appealing for hospitalists, but they have not been validated in large studies.”

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The Hospitalist’s Role in Post-Acute Care

From my article in the April issue of ACP Hospitalist

As he pulled into the hospital’s parking garage before work on a recent morning, hospitalist Ryan Greysen, MD, thought about one of his patients slated for discharge that day, a middle-aged man recovering from a major stroke. The stroke had caused dramatic and sudden changes in the man’s cognitive and functional abilities, and he was about to undergo an extensive period of rehabilitation in a skilled nursing facility (SNF).

“I did the best I could to ensure a really good handoff to the receiving MD but, ultimately, I wondered, ‘Why isn’t it easier for me to remain connected to this patient and his family?’” said Dr. Greysen, a hospitalist at the University of California San Francisco (UCSF) medical center.

Photo by Thinkstock

Photo by Thinkstock


It’s a familiar dilemma for many hospitalists. When seriously ill patients are discharged to SNFs for rehabilitation or ongoing care, physicians might like to spend more time on the discharge process, but they’re often forced to hand off some of the details in order to focus on other patients and new admissions.

“As hospitalists, we try to provide really good care for our patients as they’re leaving the hospital, but we wind up feeling stuck and frustrated because often we’re working against a system that’s not set up to work that way,” said Dr. Greysen. “We unintentionally but understandably get disengaged.”

Over the past decade, hospitals have implemented multiple successful interventions aimed at reducing preventable readmissions, but those reforms have largely focused on systems rather than individual physicians, noted Dr. Greysen and Allen Detsky, MD, PhD, in a perspective in the October 2015 Journal of Hospital Medicine.

As a result, hospitalists often lack the guidance and support they need to fully engage in postdischarge planning.

In addition to lack of time, hospitalists often have too little information about post-acute care options to make informed decisions, said Leora Horwitz, MD, MHS, FACP, associate professor in the departments of population health and medicine at New York University School of Medicine. Until recently, it has been difficult for hospitalists to access details on the type or quality of care provided at the different facilities to which they routinely refer patients.

“We have historically done a poor job of understanding the differential outcomes at various nursing homes,” said Dr. Horwitz, who studies transitions of care. “Tracking outcomes and giving feedback to community facilities is relatively new, and it could make a real difference in the kind of care patients get.”

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