Care Redesign

The Value of ICU Care at the End of Life

Article · September 28, 2016

As a physician who practiced critical care medicine for over 20 years, I find myself frequently reflecting back on the most onerous part of that responsibility: dealing with death. In an age when we are trying to understand what really constitutes value for patients, I remain most troubled by health care’s failures to match what patients want and what too often happens to them when life ends.

The value approach is a balance between what outcome a patient wants relative to the cost — both financial and nonfinancial — to achieve that outcome. An ICU stay should improve value for the patient, with the outcome being to survive this awful experience and, hopefully, to live many more years. Unfortunately, that positive outcome does not happen as often as we all would like. The costs of such end-of-life experiences in the ICU are immense.

For far too many patients, their critical care experience is of very low value. When asked how they would prefer to die, about two-thirds of people say they want to die at home unless it is too much of a burden to their loved ones. Yet since the 1980s, less than 20% of patients die at home, and over a fifth of all deaths in the United States today happen in an ICU or shortly after an ICU stay. So we in health care are not doing a great job matching what people want with the outcomes they get.

For thousands of years, people died at home surrounded and supported by their family and friends. While not always pleasant, it was the way it was. The dying process for mankind was transformed by the emergence of hospitals in the 19th century and the development of ICUs in the 20th. With hospitals, we introduced a new place to die outside the home. With ICUs, we intervened with life support and stayed the natural processes of respiratory and circulatory failure — the common pathways to death. The advent of the ICU transformed dying from a natural process to one where care stopped only when death was imminent.

On the cost side of the value equation, 25% of U.S. health care spending goes to the 6% of people who die every year. ICUs account for 20% of all health care costs. Thus dying in the ICU is both more expensive than dying at home and less desirable in the eyes of most people. So why does it continue to happen?

One explanation is that death is a retrospective diagnosis. If you knew for sure you were going to die, then you might make different choices about care. Another problem is that most ICU patients lose their ability to make informed choices once they arrive, because of illness and treatment. Decisions are then delegated to families and significant others, who often neither understand the patient’s wishes nor have sufficient confidence to make a decision to end life support. While advance directives are an attractive concept, the reality is that they are not legally binding documents and are frequently put aside by well-meaning families.

Deciding What Is Right — With the Patient

The problem is both humanitarian and economic. We want to do what patients want, and we do not want to burden the health care system with expensive, unwanted life support at end of life.

Yet it is a difficult problem with many facets. Since physicians can rarely predict when someone will die, and since we have been trained to try to prevent death from illness, the default position is to help. Even with advanced, recalcitrant malignancies, progressive neurological disorders, and many other diseases, it is difficult to know when death is imminent. Often it does not become clear that death is inevitable until patients are well into life support ICU care.

So how do we transform end-of-life care in this difficult situation? We need patient engagement. Not just when they are ill, but when they are well. The best time to have a conversation about the end of life is not when the patient is in impending respiratory failure, but when everyone is well and clear-headed. Patients need to know what ICU care really means. How does it feel to be intubated and receiving cardio-respiratory support? What would death in an ICU look like? In a small study about do not resuscitate / no code orders, when patients saw a video depicting CPR, many chose not to have CPR. The same should happen about the realities of death in an ICU. We should plan for dying the way we plan for births. We should feel comfortable talking about death with our loved ones.

Physicians need the time and support to have frank conversations with their patients about their wishes. The fast pace of American medicine often prevents well-meaning clinicians from having these important conversations in their offices — instead postponing it for a hospital ward when the patient is short of breath or as the patient is being transferred to an ICU with impending respiratory failure. Treating physicians need to develop better relationships with palliative care teams, who have tremendous things to offer patients with advanced diseases.

While physicians should not be rationing care, there need to be limits to what we do at the end of life. Just because we can do something in an ICU does not mean we should. Providing comfort to a patient at the end of life is also an important role for the health care team. Value for the patient means providing the outcome they want based on their unique situations. Unless we ask, we will not know.

Call for submissions:

Now inviting expert articles, longform articles, and case studies for peer review

Connect

A weekly email newsletter featuring the latest actionable ideas and practical innovations from NEJM Catalyst.

Learn More »

More From Care Redesign
Diagram Illustrating the COPD Care Pathway at Allegheny General Hospital

End-to-End Care for COPD Patients that Improves Outcomes and Lowers Costs

Allegheny General Hospital created a comprehensive solution for patients with chronic obstructive pulmonary disease (COPD) that led to improved clinical outcomes, reduced hospital admissions and readmissions, and a resultant decrease in the total cost of care.

David Blumenthal and Bob Galvin head shots

Ripe for Disruption: Why and How Big Players in the Private Sector Are Taking on Health Care

For big tech companies like Amazon, Apple, and Google, the health care sector looks ripe for disruption. Two executives working in different parts of the health care ecosystem discuss what this means for patients and doctors, including the positives and unintended consequences.

Top challenges facing chronic disease management care - insufficient time and care coordination

Care Redesign Survey: To Improve Chronic Disease Care, Change the Payment Model

Many health care organizations are reasonably effective in treating chronic diseases, but they are limited from doing better by fee-for-service payment, which remains the predominant payment model in the United States. This report serves as a snapshot in time, showing the intent of health care providers to be proactive in treating chronic disease, but limitations in their ability to address population health.

Nirav Shah head shot Stanford - AI in medicine and team care

What AI Means for Doctors and Doctoring

Physicians must hone the “four Cs” — critical thinking, communication, collaboration, and creativity — when leveraging AI as a new partner in their care teams.

End of Life EOL Palliative Care in the ED for Patients with Advanced Cancer - Process Map - MD Anderson Cancer Center

Patient-Centered Care at the End of Life in the ED

How MD Anderson Cancer Center is improving end-of-life care in an unlikely place: the emergency department.

Home-Based Cardiac Rehab - An Overview from Kaiser Permanente Southern California

Saving Lives with Virtual Cardiac Rehabilitation

Collaboration and innovation can improve the performance of cardiac rehabilitation.

Murali01_pullquote Home Recovery Care patient satisfaction

No Place Like Home: Bringing Inpatient Care to the Patient

Providing home-based acute care improves patient satisfaction and care quality while reducing costs.

Rating the Raters - Strengths and Weaknesses Assessment of the Four Public Hospital Quality Rating Systems - 2a

Rating the Raters: An Evaluation of Publicly Reported Hospital Quality Rating Systems

Some promising innovation is taking place among organizations that rate hospital performance, but major systemic change is needed in the field to ensure access to meaningful comparisons through better data and relevant metrics, and to establish integrated oversight through robust audits and peer review.

McKee01_pullquote - the need for coordinated care IPUs for Parkinson's disease

Creating “One-Stop Shop” Care for Parkinson’s

Integrated Practice Units (IPUs) can revolutionize the care of specialty disease conditions, and Parkinson’s disease is a good place to start.

Good Shepherd culturally competent hospice care home visit to the widow of a recently deceased patient

Strangers No More: Culturally Competent Add-On Programs for Diverse Seniors

Creating specialized culturally competent programs to improve patient satisfaction and address the unique health care needs of older immigrants.

Connect

A weekly email newsletter featuring the latest actionable ideas and practical innovations from NEJM Catalyst.

Learn More »

Topics

Design Thinking

19 Articles

Handcrafting the Patient Experience

Health care organizations can take cues from consumer-facing companies like Airbnb to creatively insert convenience…

Ripe for Disruption: Why and How…

For big tech companies like Amazon, Apple, and Google, the health care sector looks ripe…

Care Redesign Survey: To Improve Chronic…

Many health care organizations are reasonably effective in treating chronic diseases, but they are limited…

Insights Council

Have a voice. Join other health care leaders effecting change, shaping tomorrow.

Apply Now