The Endless Treadmill of End-of-Life Care

Healthcare costs are soaring and fingers can point to a multitude of causes: the aging population, technological and clinical advances, a more-is-better philosophy, to name just a few. In 2011, the United States spent $2.7 trillion—nearly 18 percent of GDP—on healthcare. On a per capita basis, that amounts to $8,400 for each citizen, up from $4,700 in 2000. The single largest payer, Medicare, paid over $549 billion of these 2011 costs, one-quarter of which were incurred during the last year of life. The quest for the miracle treatment or cure does not come cheap. And a solution to the emotionally and politically charged issue of dying will not be easy.

Robin Hertz

The debate is highly charged. Rhetoric flies about "death panels" while the "R word"—rationing—is invoked to halt any discussion about managing the cost curve. But the problem is not unique to our side of the pond. In the United Kingdom, the National Institute for Health and Clinical Excellence (NICE) recently rejected Roche's melanoma drug Zelboraf, saying the cost is too high for the limited benefit it provides to patients with few other options. Zelboraf does not stand alone in the NICE category of end-of-life drug rejections. But cancer patients in England, unlike their brethren in Scotland, Wales, and Northern Ireland, have been granted a temporary reprieve. Drugs rejected or not yet evaluated by NICE may be accessed through the Cancer Drugs Fund, a short term fund launched in April 2011 and scheduled to run through March 2014 when a value-based pricing plan for NHS reimbursed medicines is to be implemented.

Might this piecemeal approach be a panacea to the problem of paying the high cost of treatments for those with severe, terminal stage conditions? It's doubtful. Even in the unlikely event a plan could be developed to satisfy all stakeholders, the confusion about valuing end-of-life care requires more than just a single bandaid, or a better way of building a better diagnostic coding base for the major killers in cancer. More issues have to be addressed. For the sake of simplicity, let's bucket these issues into three: communication, compensation, and constructive innovation.

Communication: the doctor-patient relationship

It's easy to focus on the high price of goods and services, but communication seems a fitting place to begin a discussion about cutting costs. Certainly the issue of patient preference has made the news, and it pertains to all patients, all states of disease and wellness, and all stages of care. Bottom line: Quality care must incorporate patient preferences. With the creation of the Patient-Centered Outcomes Research Institute as part of the Patient Protection and Affordable Care Act of 2010, we've put patients front and center where they belong. Hopefully this will improve awareness of the needs of the sickest patients, because when it comes to end-of-life care, the patient is most often left out of the equation.

Indeed, the Agency for Healthcare Research and Quality has estimated that fewer than 30 percent of Americans have advanced health directives, including millions of people with debilitating chronic disease. Among vulnerable elders, only 15 percent to 22 percent had preference information recorded in their medical records. Without knowing patient preferences for aggressive treatment versus palliative or supportive care, it's tough to try anything less than the full basket of miracles. Physicians and hospitals don't wish to be sued for failing to go the extra mile.

It's not only about advance directives, however. It's about receiving information and making informed choices. Peer-reviewed literature indicates that patients tend to be too optimistic about their prognosis and response to therapy. Perhaps the underlying problem is that fewer than 40 percent of cancer patients, even those for whom death was believed imminent, are told of their prognosis or even the possibility of death. In one study, half of the patients with metastatic lung cancer who were within two months of dying had not had a discussion with their doctors about the option of hospice care. With hope so fixed on the horizon, starting a new chemotherapy regimen within a week or two of death is not unusual.

While education will likely not shift the situation entirely, there is reason to believe that better information will move patients and families to more reasonable and less expensive choices. Choosing less aggressive treatment may result from the new reality that comes with education, or as some research suggests, the choices may change if the patient's fear of abandonment is mitigated. Knowing care plan alternatives and understanding that other care providers will be involved even if the patient opts out of chemotherapy can result in lower costs.

Many doctors, however, say it's difficult to initiate conversations about prognosis and end-of-life decision-making. This type of communication is not part of their skill set; they were trained to cure people, not let them die. Doctors need to acquire this skill, for the sake of their patients and the national budget. Research indicates that patients who have had conversations with their doctors experience less anxiety, receive less aggressive end-of-life care, and are unlikely to die in an intensive care unit.

In her 2012 memoir, journalist Amanda Bennett writes of her marriage and her husband's end-of-life care. Terrance Foley died in 2007 and both he and his wife clung to the hope offered to them by his oncologist. Pouring through medical records after Foley's death, Bennett learned that many in the hospital disagreed with the oncologist's optimism, and the well-meaning staff continued testing and treating although they knew Foley would soon be dead. Less than a week before Foley's death, a resident spoke to Bennett about end-of-life choices and her husband's imminent passing. This was the first-ever conversation of this sort she had. Foley was in the intensive care unit, slipping in and out of coma, and husband and wife never had a chance to say goodbye. The emotional cost was high, and years later, while reviewing his records for her memoir, she learned about the charges paid by insurance and wondered if they would have made different choices if only they had been informed.

Compensation

As difficult as communication is, the issue of compensation may be a stickier one, requiring major system change. Oncologists are among the highest paid medical specialists and studies based on Medicare data have indicated that some practicing oncologists select chemotherapy for their patients to maximize income. Services coded as "evaluation and management" do not reimburse as generously. To help solve the problem, some organizations are experimenting with new approaches. United Healthcare is testing an episode management program in which oncologists are not financially incentivized for choosing chemotherapy, while McKesson's US Oncology has implemented a pathway-driven care process. Hopefully these experiments will result in findings that can lead to best practices that other organizations can adopt.

Constructive innovation

There are times that aggressive treatment is warranted. Over the past century, life expectancy in the United States has risen from 49 years to 79 years because of innovations in public health and improvements in patient diagnosis and treatment. "Miracles" have occurred because of scientific breakthroughs. Scientists and pharma companies must be realistic when it comes to "miracles," however.

Hope is an emotion but it also must be rational, effective, and cost-effective. It must prove that an innovation is worthy of registration, and, importantly, reimbursement, based on evidence that a treatment improves outcomes at a price that can be justified. This means research that includes the target population. Many diseases are age-related and disproportionately affect persons 65 years of age and older, the group least likely to be included in randomized clinical trials. Scientists and drug companies need to creatively identify options for the conduct of rigorous and scientifically valid studies that will improve decision-making for this group, which is growing larger every year. And that means thinking outside the box.

To sum it up, just as any given disease may be associated with multiple risk factors, so does the policy disease called skyrocketing healthcare costs. There is no single cure for the economic chaos, but a focus on three other C words—communication, compensation, and constructive innovation—could help mitigate the problem and improve patient outcomes and satisfaction at the same time.

Robin Hertz, PhD, an epidemiologist and specialist in comparative effectiveness and outcomes research, is principal at Observational Outcomes LLC. She can be reached at robin.hertz@observationaloutcomes.com.