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Lack of time and skill are two barriers to advance care planning cited by physicians, according to recent research. There also is a lack of clarity as to who is responsible for these difficult discussions. Some ethical implications include the following:
Lack of time was the main barrier to advance care planning discussions cited by physicians, found a recent study.1
“Recognizing a gap between what Americans claim they want in terms of advance care planning and the realities, oncologists at NorthShore University HealthSystem initiated a program designed to foster earlier discussions and planning,” says Alan Zunamon, MD, FACC, FACP, MMI, one of the study’s authors. This led to a similar initiative in the cardiology division.
“Unfortunately, we were not as successful, and wondered whether we could understand the barriers better,” says Zunamon, a senior attending physician in the health system’s division of cardiology.
Researchers surveyed a total of 117 cardiologists, oncologists, primary care physicians, and cardiology and oncology support staff. “The most surprising finding was that there was such variation among the doctors about who was responsible for the advance care directives, depending on the condition,” says Bernard Ewigman, MD, MSPH, FAAFP, also one of the study’s authors. Ewigman is professor and chair in the department of family medicine at the University of Chicago.
Only 15% of cardiologists felt it was their responsibility to conduct advance care planning discussions with their congestive heart failure (CHF) patients. In contrast, 68% of oncologists accepted this discussion as their responsibility in patients with terminal cancer.
While 68% of PCPs felt personally responsible for advance care planning discussions with CHF patients, only 34% felt the same about patients with cancer.
“This may reflect fragmentation of patient care among primary and specialty doctors,” says Ewigman. The study’s findings suggest that it is not clear which physician is responsible. “As physicians, we have an ethical obligation to know our patients’ desires and values regarding end-of-life care,” says Ewigman.
There was alignment between primary care and oncology, that, for patients with serious and life-threatening cancers, the oncologist should be the leader in initiating end-of-life discussions.
“On the other hand, even for patients who had congestive heart failure with poor prognoses, primary care physicians and cardiologists seemed to think that the primary care physicians should be the leaders,” says Zunamon.
The study’s findings underscore just how difficult initiating and implementing advance care planning truly is. “We cannot assume that the specialist, who may understand the prognosis and options better than the primary care physician, is necessarily the most effective individual to initiate and lead such discussions,” says Zunamon.
Tim Lahey, MD, MMSc, chair of the clinical ethics committee at Dartmouth-Hitchcock Medical Center in Lebanon, NH, says that clinician failure to engage in advance care planning is “perhaps the most prominent symptom of the disease of misallocation of healthcare resources. Exhorting overextended clinicians to do the right thing misses the point entirely.”
Instead, argues Lahey, there is a need to fix a system that incentivizes costly treatments such as chemotherapy or surgery at the expense of conversations with patients.
Medicare now reimburses physicians for advance care planning through a recently established billing code which pays doctors for their time. The code is, unfortunately, rarely used, says Dana Lustbader, MD, FAAHPM, chair of the department of palliative medicine at ProHEALTH in Lake Success, NY: “Perhaps, this is because providers avoid these difficult conversations.”
Incentives for advance care planning still are substantially lower than other, more costly therapies. “It should not surprise us, therefore, that millions of patients continue to get care they don’t want at the end of life,” Lahey says.
Clinicians view the major obstacle to advance care planning to be that they are overbooked. “In a superficial sense, that’s true,” says Lahey. “But, looking more deeply, the reason clinicians are too overbooked to know what their patients prefer from their care is that clinicians are incentivized to do different kinds of care, and they are busy in doing it.”
Lahey says that until healthcare “weans itself off the addiction of fee-for-service care that incentivizes procedures over thinking, and biomedical interventions over listening, we will never fix this problem.”
Most physicians never received training in serious illness communication. “When I was a critical care fellow, we had to perform dozens of procedures, like placing a large intravenous catheter into a large vein in the neck, with supervision and feedback before we were deemed proficient in the task,” Lustbader notes.
Having a serious illness conversation with patients and their loved ones also requires training. “Good conversations between provider and patient do not happen by chance,” says Lustbader. The provider needs to ask the patient open-ended questions, such as, “What are you worried about most right now?” or “As your disease progresses, what is most important to you?”
Serious illness conversations about treatment preferences need to occur over time as the condition progresses, so the patient and provider can together come up with a treatment plan that aligns with the patient’s goals. Most people with serious illness prefer to spend as much time at home as possible with friends and family members, and avoid burdensome ED visits or hospital admissions.
Despite this, half of all patients go to the ED in their final month of life, says Lustbader, mainly because important conversations about end-of-life preferences did not occur.
“Most of the time, physicians have very poor conversations, resulting often in the provision of treatment that patients don’t want or value,” says Lustbader. “Although these conversations take time, the greatest barrier is skill.”
Financial Disclosure: Consulting Editor Arthur R. Derse, MD, JD, Nurse Planner Susan Solverson, BSN, RN, CMSRN, Editor Jill Drachenberg, Editor Dana Spector, AHC Media Editorial Group Manager Terrey L. Hatcher, and Author Stacey Kusterbeck report no consultant, stockholder, speakers’ bureau, research, or other financial relationships with companies having ties to this field of study.