Dr. Weeks’ Comment: A wonderful mentor, Dr. Alan Tisdale, taught me those words: “When in doubt, ask the patient.” and that sage advice has served me for my entire career. Medicine should be collaborative and the patient, long relegated to passive receptive role, must be empowered to speak their truthful priorities and the doctor has to start the consultation by preforming an ancient art form: listening.
“…Patients who are actively involved in their care have better overall outcomes…”
Advance Care Planning: Ensuring That the Patient’s Voice Is Heard
Jamie H. Von Roenn j-vonroenn@northwestern.edu.
Death and dying remain forbidden topics. The threat of death panels that was raised by the 2010 draft regulation supporting Medicare coverage for discussions of advance care planning fueled the fear engendered by these topics and by discussions of preferences for end-of-life care. The 1990 Federal Patient Self-Determination act, which was enacted to address patients’ right to stipulate care preferences at the end of life, was intended to provide patients with the opportunity to communicate their wishes before facing a life-threatening event and to educate the public about advance directives.1 Although the law requires health care institutions to document whether or not a patient has executed advance directives, it does not require an evaluation of the patient’s or family’s understanding of advance directives, nor does it require education about them. Current practices have circumvented the spirit of the law. At some institutions, the requirements of the law are satisfied with a box on an admission/registration form asking the patient if he/she has advance directives, without ensuring that a discussion has taken place. In others, the electronic medical record requires the admitting physician to enter a code status as a component of the admitting orders, leading to a 100% documentation rate. In at least one institution, the admitting physician can circumvent the need for discussion by selecting the most commonly used designation, “Full Code””discussion with patient/surrogate not appropriate or possible at this time.”2
More than half a million Americans died as a result of cancer in 2011, and most of them had inadequate documentation of their preferences for end-of-life care, specifically with regard to resuscitation. The majority of the discussions that elicit preferences for resuscitation occur in the hospital without time for thoughtful discourse. One large cancer hospital reported that 86% of patients who died in the hospital had a documented do-not-resuscitate (DNR) order.3 This is an encouraging statistic until one recognizes that the median time between signing the order and death was 0 days. Because the patients were close to death, about a third of the DNR orders were signed by surrogates. Again, there was no time for considered discussion with the patient and family. A recent study noted that oncologists discussed end-of-life issues with only about a quarter of patients with non-small-cell lung cancer, and more than half of these discussions took place in the inpatient setting, a mean of 33 days before death.4 Less than 15% of ambulatory patients with advanced cancer have documented advance directives.5
In the article that accompanies this editorial, Temel et al,2 building on their previous work,6 report on the use of electronic prompts to improve outpatient code status documentation for patients with advanced lung cancer.2 The investigators developed an e-mail message to remind oncologists from the thoracic oncology clinic to report code status in the outpatient medical record. The reminder was delivered to the primary oncologist on the day of the first clinic visit after a patient agreed to participate in the trial and on the day of the outpatient appointment immediately following the start of each new chemotherapy regimen. The oncologist continued to receive e-mail reminders until code status was documented in the outpatient medical record. At the 1-year follow-up, about a third of the electronic prompt participants had a documented code status compared with 14.5% of historical controls from the same clinic. The majority of patients with recorded preferences chose to allow death to occur naturally rather than undergo resuscitation. Furthermore, the mean time from the date of first intravenous chemotherapy to outpatient code status documentation was about 2 months less for the electronic prompt participants, significantly increasing the time between end-of-life care discussions and death as compared with previous reports.4 This is an improvement, but we still have a long way to go.
Patients who are actively involved in their care have better overall outcomes. The recent Institute of Medicine report entitled, “Communicating with Patients on Health Care Evidence,”7 outlined the three essential and equally important elements of shared decision making: medical evidence (What is my prognosis? What is the toxicity of the treatment? How will treatment affect my quality of life? What is the likely course of my cancer if I don’t take treatment?), clinician expertise (What is the best treatment recommendation for a particular patient with a given performance status or set of comorbidities? What should be recommended for an individual patient?), and the patient’s preferences, values, and concerns. Without discussions to clarify patient goals and desires for specific medical interventions, the provision of high-quality care is impossible. To formulate treatment preferences, patients need honest information about the relative benefit and burden of treatment. Nine out of 10 patients want to know their treatment options, and two thirds want to discuss the associated risks of treatment, including the impact on quality of life.7 In a survey of more than 1,000 Americans, nearly half strongly agreed that they wanted to discuss the option of no treatment.7 Communication about diagnosis and treatment is not a single event. It is an ongoing conversation. Prognosis and quality-of-life concerns change over the course of illness. For patients with advanced cancer, treatment discussions must include an exploration of the patient’s preferences for end-of-life care. Patients who have an advance care planning discussion with their doctor are less likely to choose resuscitation or ventilation and less likely to die in an intensive care unit.8 In the absence of these discussions, patients may receive unwanted, overly aggressive care that incurs cost for the patient and society and is associated with decreased quality of life for the patient and family and worsened bereavement adjustment for caregivers.
Conversations about end-of-life preferences are difficult for everyone, even more so because physicians do not receive adequate training in communication skills. National guidelines recommend that physicians initiate these discussions when a patient has an estimated prognosis of less than 1 year.9 Because we all tend to do what is most comfortable on the basis of our training, it is not surprising that many oncologists prefer to delay the often difficult conversations regarding code status or hospice care until there are no nonpalliative treatment options remaining.10 A systematic review and meta-analysis of the efficacy of communication skills training in oncology concluded that skills training is a promising approach to change this communication behavior.11 This training is essential. System changes such as the one described in the article by Temel et al2 are necessary, but without adequate physician communication skills, such changes are insufficient to provide patients with the opportunity to voice their concerns and values about end-of-life care and their preferences for specific medical interventions.