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Five Studies: The Importance—and Difficulty—of Talking About Advanced-Care Planning

The danger of silence when it comes to end-of-life care.
acp end of life care

(Photo: Lighthunter/Shutterstock)

There is perhaps no other issue in health care that elicits an emotional reaction on par with the question of how we die.

The discussions around “end-of-life care” and “advanced care planning” (ACP) typically concern the treatment we will receive (or forgo) at end of our lives, and often they identify a surrogate decision-maker: someone whom the patient trusts to make sensible decisions on their behalf when they are no longer capable of doing so themselves.

Before this year, any discussions oriented toward ACP had to have taken place during doctor’s appointments scheduled for other purposes—the reason being that physicians are not allowed to bill for time dedicated to discussing ACP. However, these conversations often take time, and forcing us to rush them hurts everybody.

On July 8, 2015, the Centers for Medicare and Medicaid Services (CMS) presented a proposal to update the 2016 Physician Fee Schedule to include payments for physicians (and other qualified health-care providers, such as nurse practitioners and physicians’ assistants) who hold conversations about end-of-life care with patients and family members or caregivers. The CMS proposal introduced two new billing codes that took effect on January 1, 2016; the Obama Administration issued its endorsement of the proposal on November 1, 2015.

Debate over end-of-life care planning has been impassioned, reaching a certain peak with the legislation of the Affordable Care Act in 2009–10. Led by Alaska’s former governor Sarah Palin, who fallaciously termed similar provisions for advanced care planning “death panels,” congressional Republicans claimed that the proposal was equivalent to encouraging individuals to forgo treatment to enable cost savings.

Despite the uproar, advanced directives (for simplicity, the written product of ACP discussions) do not dictate when or how the person will die, but instead aim to align care with the person’s values. In fact, refuting the death-panel label, research has shown that, after one year, people who have discussed their care preferences are no more likely to have died than people who have not discussed end-of-life care.

As Baby Boomers continue to break records for longevity, these discussions will become ever more frequent. Talking about the type of care we’d want when time is short is also in line with recent shifts in the health care paradigm toward more person-centered care. Learning how best to approach these discussions and their implications for care delivery is therefore more relevant than ever. Here are five studies to help you understand the importance of these conversations, and what is preventing us from having them.



“But you never asked....”

Do people even want to talk about how they might spend their final days, weeks, or months?

Talking about death and dying is unfamiliar, not to mention often both scary and uncomfortable. But a recent poll of 1,202 adults conducted by the Kaiser Family Foundation revealed that a majority of people would like to discuss the type of care they would wish to have or forgo when a decision must be made.

When questioned specifically about CMS’s recent proposal, the poll indicated significant, cross-partisan support for requiring Medicare reimbursements (81 percent) or private insurance coverage (83 percent) for discussions focused on ACP.

Unfortunately, despite wanting to have these conversations with their doctor, less than 20 percent reported having engaged in them, with the discussions occurring more frequently with increased age (34 percent, for people aged 75 and over) and among those with a chronic condition or disability (condition or disability, 31 percent, versus not, 13 percent).

Kaiser Health Tracking Poll: September 2015,” DiJulio, B., Firth, J., and Brodie, M., Kaiser Family Foundation.



A lack of communication means that we may be missing the mark in terms of providing the care people actually want.

A recent study looked at preferences for treatments that are meant to enhance quality of life—not merely to prolong it. Using a Quality-Quantity Questionnaire, 296 individuals with advanced lung cancer were asked to indicate their level of agreement with statements such as “to live a bit longer I would try any treatment that might help,” and “I can imagine some side-effects being so bad that I would refuse treatment, even if it meant a shorter life.”

The researchers’ findings showed that survival benefits often don’t outweigh concerns for quality of life. More specifically, they found that, among newly diagnosed lung-cancer patients, there was a significant preference for mitigating suffering, given the option of trading off longevity and quality of life.

Medical expenditures in the last year of life are often significantly higher than at any other time during a person’s life. Critics have therefore framed discussions of end-of-life care as means by which treatments can be limited and costs can be curbed. Research on end-of-life preferences is therefore important in refuting these claims and underscoring that less care is actually often the chosen care trajectory.

—“The Relationship Between Smoking and Quality of Life in Advanced Lung Cancer Patients: a Prospective Longitudinal Study,” Danson, S.J., et al., Supportive Care in Cancer, September 2015.



There is evidence that, in addition to saving the patient (and the health system) from unwanted treatments, ACP increases quality of life as patients near the end. The reason for this seems pretty straightforward: It’s easier to get what you want when you ask for it.

In a 2013 study, researchers assessed the effects of ACP on quality of care at the end of life. They found that, among 4,394 participants, 76 percent had engaged in advanced-care planning, with 92 percent indicating a preference to prioritize comfort over aggressive measures to prolong life.

People who had considered the type of care they’d like to receive were less likely to die in the hospital and less likely to spend more than two weeks in the hospital during their last month of life. They were more likely to enroll in hospice care directed at symptom management and comfort care, and less likely to spend three or fewer days in hospice. Finally, in their last month of life, they were less likely to visit the emergency department more than once and less likely to be admitted to an intensive care unit.

Knowing what care is wanted also seems to be beneficial for those close to, or who care for, the patient. In a study of patients with end-stage renal disease and their surrogate decision maker, researchers found that the surrogates had lower feelings of guilt, confusion, depression, and anxiety compared to a control group of family and loved ones who had not discussed end-of-life care. Other studies have similarly observed results of improved career outcomes when end-of-life discussions had occurred.

Advance Care Planning and the Quality of End-of-Life Care Among Older Adults,” Bischoff, K., Sudore, R., Miao, Y., Boscardin, W.J., and Smith, A.K., Journal of the American Geriatrics Society, Vol. 61, No. 2, 2013.



Earlier this year, researchers published a study in the Annals of Internal Medicine that set out to get a clearer picture as to whether national efforts over the past decade have resulted in improved symptom management at the end-of-life.

Using data (N=7,204) from the Health and Retirement Study, a longitudinal survey of community-dwelling Americans aged 51 and older, they examined trends in end-of-life symptom prevalence from 1998 to 2010. Individuals who participate in the HRS were interviewed at two-year intervals until their deaths. After death, a proxy informant (someone who reports on behalf of the decedent) was asked to provide information on the individual’s experience of particular symptoms in the last month of life (depression, confusion, dyspnea, incontinence, fatigue, anorexia, and vomiting) or, in the case of pain, the last year of life.

The findings are concerning. Based on the proxy reports, significantly more Americans experience pain (increase of 12 percent), depression (increase of 27 percent), and periodic confusion (increase of 31 percent) at the end of life than was the case slightly over a decade ago.

The underlying causes are not obvious. The increases may be in part due to proxies having had varying perceptions or experiences at different times over the course of the study. It is also possible that a trend toward more frequent provision of aggressive, life-prolonging treatments over the course of the study may have contributed to the discomforts experienced at the end of life.

Overall, the study provides a strong indication that something needs to change with regards to the care we receive as we approach death. Encouraging more frequent communication on these issues is sure to be a good way to start.

Symptom Trends in the Last Year of Life, 1998-2010: A Cohort Study,” Singer, A.E. et al., Annals of Internal Medicine, Vol. 162, No. 3, 2015.



While there may be widespread support for ACP and evidence that it provides favorable outcomes, are physicians comfortable carrying out these difficult conversations?

A 2015 survey of cardiologists and primary care doctors suggests that a lack of reimbursement may not be the only barrier. When researchers studied physicians’ expectations, practices, and level of confidence in discussing these issues and providing end-of-life care to patients with heart failure, the results were unimpressive: Overall, 30 percent of doctors indicated they had low or very low confidence in terms of one or more of the following: initiating discussions relating to the patient’s prognosis or end-of-life care wishes, enrolling patients in hospice, or providing end-of-life care. Physicians with more years in practice reported higher levels of confidence in initiating discussions about the patient’s prognosis or end-of-life care.

Most clinicians expressed interest in learning more about addressing end-of-life care. At the moment, medical students in the United States receive only about 17 hours of instruction on end-of-life care during their entire training, which amounts to the equivalent of one morning lecture a year for four years.

—“A Survey of Clinician Attitudes and Self-Reported Practices Regarding End-of-Life Care in Heart Failure,” Dunlay, S.M., Palliative Medicine, Vol. 29, No. 3, 2015.