EXECUTIVE SUMMARY
ICU admissions are far more common in the United States than other countries, yet the U.S. has the lowest proportion of in-hospital deaths, according to a recent study. Key findings include the following:
- Only about one in five U.S. cancer patients died in acute care hospitals.
- U.S. patients spent the fewest days in the hospital in the last six months of life.
- Aggressive care was much more common in the U.S.
Not surprisingly, intensive care unit (ICU) admissions were more than twice as common in the U.S. as in other countries, according to recent research comparing the site of death, healthcare utilization, and hospital expenditures for terminally ill cancer patients in seven developed countries.1
On the other hand, the U.S. actually has the lowest proportion of deaths in the hospital — and patients spend the least number of days in the hospital in their last six months of life.
“It’s surprising to us that the U.S. was better on many measures of end-of-life care, and not worse on others,” says lead author Justin E. Bekelman, MD, associate professor in the Departments of Radiation Oncology and Medical Ethics and Health Policy at University of Pennsylvania’s Perelman School of Medicine in Philadelphia. Other key findings include the following:
- Only about one in five patients with cancer in the U.S. died in acute care hospitals, whereas, for example, in Belgium and Canada, one in two patients died in acute care hospitals.
- The U.S. did not spend the most per patient on care in the last six months of life. “Canada and Norway were just as expensive, if not more,” says Bekelman.
The findings could be an indication that efforts to promote advance care planning, and palliative and hospice care, have had a significant effect on U.S. healthcare practices, says Michael A. Rubin, MD, MA, chair of the ethics committee at University of Texas Southwestern Medical Center in Dallas.
“In order for the U.S. to have a high ICU admission rate and low in-hospital death rate, we are likely recognizing when patients have reached end of life,” says Rubin. “And we are establishing a plan of care to de-escalate interventions and provide adequate care at home.”
PATIENT PREFERENCES
The overarching goal, says Rubin, is to optimize concordance between patient preference and the selection of a medically feasible care plan. “When we succeed at such, cost savings will follow, medical providers will endure less moral distress, and patients and surrogates will experience less suffering at end of life,” says Rubin.
The researchers looked at not only where people with cancer die, but also how they spend their last six months — the last chapter of their lives. “What we found was that the last chapter is written very differently depending on country, and not necessarily in the ways we might have thought,” says Bekelman.
The goal is to improve end-of-life care regardless of which country it occurs in. “Were the last chapter written by our patients, would it resemble the findings that we report?” asks Bekelman. “The answer is no, and that’s why we have more work to do.”
The researchers advocate providing care that is more concordant with patients’ wishes for fewer hospital stays and death at home. “The experience of the United States and the Netherlands suggest that end-of-life care can evolve to better reflect patient’s preferences,” says Bekelman. “But we have a ways to go.”
Although the mix of services is different, dying with cancer involves a great deal of healthcare in all the countries studied, says Julie Bynum, MD, MPH, one of the study’s authors. Bynum is associate professor at The Dartmouth Institute for Health Policy & Clinical Practice in Lebanon, NH.
“From my perspective as a health service researcher and geriatric medicine physician, the central ethical issue revolves around whether people have access to the type of care they prefer,” says Bynum. A related ethical concern is whether their preferences are elicited and honored when they need those services.
In the U.S., hospital stays are shorter and fewer people die in the hospital. “This is related to the availability of other kinds of places to go — nursing homes or home with hospice support, for example,” says Bynum. “In other countries, hospitals deliver palliative care.”
Where the U.S. stood out as different from the other countries is the use of the ICU — a place where aggressive, life-supporting services are delivered. “The ethical question this raises is whether that type of service is being delivered based on a fully informed patient and family, who understand the prognosis and what those services can reasonably achieve,” says Bynum.
PHYSICIANS NEED SUPPORT
Wayne Shelton, PhD, professor in the Alden March Bioethics Institute at Albany (NY) Medical College, says, “In the U.S., there is a tendency to practice ‘rescue’ medicine, and to use the technology that we have available.”
In some cases, technology extends life in a meaningful way. “The problem is when you use it in situations where at best you are getting marginal benefits,” says Shelton. “In some cases, you are causing harm. This violates the ethical principle of nonmaleficence.”
Such scenarios stem from the expansive view of individual autonomy in the U.S. without consideration for the cost of care, says Shelton. “We tend to give people the right to have what they want at the end of life,” he adds.
This sometimes results in physicians providing care they believe is inappropriate. “As a physician, if you go outside the standard of care and do something inappropriate because of the fear you are going to upset someone, or fear you will be sued, that’s an ethical issue,” says Shelton.
Physicians are caught between pleasing patients and family and doing what is right medically and ethically. “Physicians should not be giving options to distressed families who are acting as surrogates of dying patients as though it were a Chinese food menu where everything is equally good and it’s just a matter of what they want,” Shelton says.
While clinical ethicists can provide support to physicians, institutional support is needed, he emphasizes. “One of the big drawbacks to end-of-life care is that there is no standardized approach to providing it,” says Shelton.
Policies and procedures can define the commitment to provide appropriate medical treatment and the limits of what options will be offered. “The leaders of institutions have to make that loud and clear, so physicians, when they do the right thing and refuse to practice outside the standard of care, aren’t left to hang out to dry as individuals,” says Shelton.
Appropriate end-of-life care and cost-effective care aren’t mutually exclusive. “This is an issue where cost and quality overlap,” Shelton says. “I’m not implying we should deny appropriate care to anybody, I’m talking about treating patients appropriately.”
Cost of care is expected to be a driving force in changing the way end-of-life care is provided in the U.S. “Change will come, if for no other reason than we will go bankrupt if we don’t change,” says Shelton. “We are the most costly and least efficient system in the world. There is not even a close second.”
Part of the reason is that treatments are often utilized in the U.S. that don’t add to the quality of care. “There are some ethical issues that are uniquely American, that no other country would deal with,” says Shelton. “People are given the right to have someone kept alive in a vegetative state for sometimes not only years, but decades.”
New generations of physicians with a different outlook and the determination to affect change are needed, says Shelton.
“It’s the medical culture in which new doctors train, and the clinical mentors from whom they pick up basic habits, that will have the biggest impact,” he says. “We have to be change agents, and it’s not easy.”
Reference
- Bekelman JE, Halpern SD, Blankart CR, et al. Comparison of site of death, health care utilization, and hospital expenditures for patients dying with cancer in 7 developed countries. JAMA 2016; 315(3):272-283.
SOURCES
- Justin E. Bekelman, MD, Associate Professor, Departments of Radiation Oncology/Medical Ethics & Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia. Phone: (215) 662-7266. Fax: (215) 349-8975 Email: [email protected].
- Julie Bynum, MD, MPH, Associate Professor, The Dartmouth Institute for Health Policy & Clinical Practice, Lebanon, NH. Phone: (603) 653-0827. Email: [email protected].
- Michael A. Rubin, MD, MA, Chair, Ethics Committee, UT Southwestern Medical Center, Dallas, TX. Phone: (214) 648-8513. Fax: (214) 648-0341. Email: [email protected].
- Wayne Shelton, PhD, Alden March Bioethics Institute, Albany (NY) Medical College. Phone: (518) 262-6423. Email: [email protected].
