In the overleaf of his book “Being Mortal,” Atul Gawande, MD, claims that “Doctors are trained to keep their patients alive as long as possible. But they are never taught how to prepare people to die.” At first blush this seems to be out of context and an overly generalized statement when recognizing the broad efforts in recent years in both health care systems and training programs to incorporate principles and practices of palliative care. Improvements can definitely be seen in the care and discussions that occur with patients and their families, particularly those with advanced illness. We're doing better, but admittedly, there is still room for improvement.
The importance of end-of-life discussions has been further underscored by the growing legal and regulatory expectation that health care teams remain patient-centered, engage patients in shared decision making, and respect the autonomous rights of patients to choose and refuse treatment. My observation is that most, if not all, residency training programs and medical schools to some degree incorporate the study and awareness of end-of-life issues in their curriculum, including how to communicate bad news and approach questions of futility. Whether it is done “well” or not is another matter, but in general my sense is that learners are being taught, have greater awareness, and at some level are more comfortable having discussions of this kind with their patients.
More recently, discussions about end-of-life care have expanded to recognize the importance of high-value care that is both frugal and evidence-based, resulting in maximum quality at reasonable cost. An article by Ziad Obermeyer, MD, MPhil, in the Nov. 12, 2014, JAMA reported that Medicare cancer patients with poor prognosis who were receiving hospice care had significantly lower rates of hospitalization, ICU admissions, and invasive procedures, and thus significantly lower total costs during their last year of life, than patients not admitted to hospice, who utilized acute care services to a much greater extent.
An editorial in the same issue of JAMA by Joan M. Teno, MD, MS, noted that there has been increasing attention on the quality of life of seriously ill and dying patients, with emphasis on whether patterns of care and treatment, especially aggressive treatment, are consistent with patient preferences and improved quality of life for the dying.
The evidence suggests that well-structured end-of-life care can prevent unnecessary cost while still pursuing the primary goal of high-quality care for dying patients. Dying patients are vulnerable, frail, and often elderly. They are at a point in their lives where they need and want compassionate comfort care and special consideration for avoiding unnecessary and often painful interventions. The point that Dr. Teno appropriately drove home is that if concern for compassion, respect, and quality of care for dying patients is not centermost in discussions about high-value care and cost control, then recent momentum leading to improvements in end-of-life care could face a serious setback. With this I wholeheartedly agree.
Success in end-of-life care begins with how effectively we communicate with patients and their loved ones. A Special Communication published in the December 2014 JAMA Internal Medicine by ACP's High Value Care Task Force concluded that although care at the end of life has improved over the last 15 years with the advent of improved access to hospice and palliative care, many opportunities for improvement still exist. The Task Force encouraged conversations about serious illness, values, beliefs, and care goals as a routine standard of care for all clinicians who care for patients who have advanced illness and are at serious risk of dying. Evidence suggests that few health care systems have deployed policies and practices that systematically address advance care planning, even for patients with serious illness; though awareness is improving, many physicians and other clinicians still lack basic understanding about advance health care planning and how it affects patient care.
The Patient Self-Determination Act (PSDA), which took effect Dec. 1, 1991, was intended to promote awareness and discussions with patients in preparation for medical decisions that might be needed at the end of life. Since that time, however, the proportion of patients who have written health care directives at the time of admission to health care systems has remained unchanged, at around 18%. The question about having health care directives is being asked to patients by health care systems as required by this law, but the discussions as to the importance of having them is still not occurring consistently or effectively. As our High Value Care Task Force suggests, most patients want palliative interventions when indicated. What's more, they would prefer to die at home and avoid aggressive futile treatment, yet most still die in institutional settings. Families and health care teams often still assume that dying patients want aggressive treatment, but this is untrue more often than not.
A recent Institute of Medicine Report, “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life”, offers a model of care for those with advanced illness, stating it that should be seamless, high-quality, integrated, patient- and family-centric, and consistently available. It should also be delivered by those trained and skilled in giving it. ACP agrees with these principles and embraces the physician's fiduciary responsibility to apply the right care and treatment at the right time and for the right reasons, based on evidence, medical indications, and patient preferences.
Discussions about end-of-life care, especially early in the course of illness, are associated with care that is consistent with patient goals and improved outcomes, especially in relation to quality of life. There is no evidence that end-of-life discussions increase depression or anxiety or cause the patient to lose hope, as some believe. Having effective discussions with patients about death and end-of-life care is not about death panels, assisted suicide, giving up, abandonment, or cost cutting. It's about professionalism, leaning in, and being compassionate. Having meaningful discussions with our patients when it's hard and when they need physicians the most is being patient-centered and fulfills our fiduciary responsibility, to both patients and society, to provide high-value care.