'Getting What You Want': Aligning Goals with Actual Care in Patients with Serious Illness
Jan 22, 2015, 3:00 PM
Rachelle Bernacki, MD, MS, is director of quality initiatives in the department of psychosocial oncology and palliative care at the Dana-Farber Cancer Institute, associate director of the Serious Illness Care Program at Ariadne Labs, and an alumna of the Robert Wood Johnson Foundation (RWJF) Clinical Scholars program (2004-2006).
The Institute of Medicine recently released a report entitled Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. The news headlines read: “Panel Urges Overhauling of Health Care of End of Life.”
Here’s why: Most Americans wish to die at home and want to avoid heroic measures to keep them alive. Yet most die in institutional settings like hospitals and nursing homes, and 20 percent die in intensive care units.
The transition of death from the home to institutional settings over the past 40 years has been promoted by the advent of new medical technologies. While these remarkable technologies can be life-saving for certain patients, for many others aggressive therapies may simply prolong the dying process and extend suffering. In addition, many patients who die in institutional settings die with undertreated pain and difficult or labored breathing. And many report inadequate communication with their physicians about their end-of-life preferences.
Numerous studies show that patients want to have conversations about their end-of-life care and expect their physicians to initiate these discussions. When these conversations occur, there is greater alignment between patients’ wishes and the care they receive; higher patient quality of life; less frequent use of non-beneficial life-sustaining treatments; more use of hospice care; reduced family distress; and reduced resource use and costs. However, many physicians do not feel comfortable having these conversations and, in fact, identify more barriers to having these discussions than do patients.
Three years ago, our team began working on a project to develop and test a system to ensure that end-of-life discussions take place with appropriate patients. In collaboration with Susan Block, MD, and Atul Gawande, MD, MPH, and with Ariadne Labs, we developed, refined, and piloted a Serious Illness Conversation Guide to aid clinicians in their discussions with patients.
The Serious Illness Care Program attempts to: 1) identify patients who would benefit from discussions of end-of-life wishes; 2) train and coach physicians and other clinicians to use a structured communication guide to elicit patient values and goals; 3) ‘trigger’ conversations between clinicians and patients; 4) facilitate patient communication with family members; and 5) document patients’ wishes in a “single source of truth” in the electronic medical record.
The goals of this system are to ensure that patients receive the care they want at the end of life to the extent possible. Our goal is to ensure that patients are able to understand their expected prognosis, define their goals, make personalized decisions about the treatments they want and don’t want, identify levels of function they find tolerable, and explore acceptable and unacceptable tradeoffs to achieve their goals, even if they are not able to speak for themselves in the moment. Designating a single location in the electronic medical record system about patient values and goals is critical to ensuring that patient goals are known and met.
In 2012, we launched a randomized-controlled trial at the Dana-Farber Cancer Institute to investigate whether the Serious Illness Care Program improves patients’ peacefulness and whether they received care that was consistent with their goals at the end of life. Thus far, we have conducted more than 20 training sessions, which clinicians rate very highly. Their confidence levels improve significantly on 18 out of 23 competencies addressed in the training.
As we launch our clinical trial, we are seeking partners to implement and measure the impact of the Serious Illness Care Program and its components. The level of interest suggests that we are at the cusp of change—a time when many institutions are recognizing a need to address end-of-life care decisions differently. Clinicians, health care leaders, and patients and families are enthusiastic about the potential our system has to create and extend change in this essential aspect of quality medical care.
To meet this need, and to take advantage of this critical moment to catalyze major change, we invite additional sites with an interest in implementing our Serious Illness Conversation Guide to join in a collaborative learning and dissemination project. We are launching a Harvard Medical School course in June 2015 for individuals to learn about and practice an innovative approach to serious illness discussions and develop competencies in training others in implementing a Serious Illness Care Program at their local institution.
1 Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363:733-42.
2. Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300(14):1665-73.
3. Zhang B, Wright AA, Huskamp HA, Nilsson ME, Maciejewski ML, Earle CC, et al. Health care costs in the last week of life: associations with end-of-life conversations. Arch Intern Med. 2009;169(5):480-8.
This commentary originally appeared on the RWJF Human Capital Blog. The views and opinions expressed here are those of the authors.