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.

New call for submissions ­to NEJM Catalyst

Now inviting longform articles

Connect

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

Learn More »

More From Care Redesign
Charlotte Yeh head shot - hearing aids hearing loss

“You’re Old Without Hearing Aids”— Addressing the Silent Epidemic of Hearing Loss

Hearing loss isn’t a normal consequence of aging. But it is associated with a higher risk of dementia, depression, and falls. The Chief Medical Officer for AARP Services talks about combating this huge but silent epidemic that impacts all ages.

Dentzer01_pullquote - Stone-Age Policies Stifle Modern Virtual Care Solutions

Stone-Age Policies Stifle Modern Solutions

Health care leaders must advocate for regulatory and reimbursement changes to unlock the potential of innovative technology and care team approaches to Parkinson’s and other suitable conditions.

Idiopathic Pulmonary Fibrosis IPF Multidisciplinary Collaborative Care Model

From Consulting to Caring: Care Redesign in Idiopathic Pulmonary Fibrosis

A multidisciplinary collaborative model to address the palliative care needs of patients with idiopathic pulmonary fibrosis resulted in improved end-of-life care and decreased hospital deaths.

Impact of PCSP on Patient Satisfaction at Providence Heart Clinic

Transforming Specialty Practice in Pursuit of Value-Based Care: Results from an Integrated Cardiology Practice

Despite significant primary care reform around patient-centered medical home models, specialty care remains fragmented, with poor communication between primary care and specialists. How should specialty practices be reformed to deliver more coordinated, patient-centered care?

Michael Bennick Yale New Haven Hospital Medical Director of the Patient Experience - Yale Living History Project

The Living History Project: Open-Ended Patient Interviews Create a Therapeutic Bridge

A program at Yale has students conduct open-ended interviews with patients about their lives, their hopes, their values, and what they most want their medical team to know — creating the opportunity for human connection and a better care experience.

Fisher02_pullquote hypertension guidelines

Hypertension Guidelines: Achieving 90% Success

Focused and innovative health systems are managing to control blood pressure for 9 in 10 patients, which is well above the national average of 50% to 60%.

Health Care Organizations Are Moderately Effective in Using Data

Survey Snapshot: Using Data for Change

NEJM Catalyst Insights Council members discuss how data and analytics are being used at their organizations, both now and with the future in mind.

Percentage of U.S. Adult Hemodialysis Patients Achieving Dialysis Adequacy, 2013-2016. Data will be released in early 2019.

Innovation in Dialysis: Continuous Improvement and Implementation

The U.S. dialysis sector has been criticized for its lack of innovation, but this criticism disregards the kidney community’s success in creating — and continuously improving on — dialysis as a safe, globally scaled, quality-oriented outpatient therapy.

Cleveland Clinic Time-to-Treatment Cancer Programming Overall Scorecard 2015-2017 Sample

Reducing Time-to-Treatment for Newly Diagnosed Cancer Patients

How Cleveland Clinic initiated a multidisciplinary program to reduce time-to-treatment and accomplish a 33% reduction.

Treatment Authorization Increases and Rapid Boost in New Mexico Medicaid Members Treated for Chronic HCV

A Collaborative Model to Expand Medicaid Treatment Coverage for Chronic Hepatitis C Virus

How managing the benefit coverage expansion for the treatment of HCV in New Mexico was successfully achieved after less than 2 years.

Connect

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

Learn More »

Topics

Mental Health

29 Articles

Stay in Your Lane? Clinicians vs.…

Should physicians stay in their clinical lanes when it comes to behavior change and social…

Opioids Epidemic

25 Articles

New Evidence on Stemming Low-Value Prescribing

New research suggests that deploying strong and surprising messages could help to address overprescribing of…

Coordinated Care

134 Articles

Disrupting the Payment Model

We should modernize our payment mechanisms to reflect the reality of our digitally enabled lives.

Insights Council

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

Apply Now