Looking Beyond the “Form” to Complex Interventions Needed to Improve End‐of‐Life Care

“For every human problem, there is a solution, which is simple, neat, and wrong.” H.L. Mencken1 Nearly 30 years ago the living will,2 a simple and neat solution for solving the perceived problem of patients being shackled to technology in their final days, was created. Legal written forms such as the living will have been ratified with the passage of the Patient Self-Determination Act.3 At the time of passage of the Act, an editorial in the Journal of the American Medical Association proclaimed that the federal government had done its job and it was now simply up to persons to use the “form.”4 Since then, empirical research has questioned the role of the written advance directive in improving medical care at the end of life5,6 In this issue of JAGS, Tolle and colleagues report impressive results in Oregon nursing homes of a new, one- page, comprehensive written directive, the Physician Orders for Life Sustaining Treatment (POLST).7 In a prospective study of 180 nursing home residents who completed this form with a healthcare provider, none had CPR, ICU care, or ventilator support utilized.7 The mean rate of hospitalizations was 174 per 1000 resident years. Have we finally found the right form that will be the “holy grail” of the advance directive movement? My answer is a resounding no! The intervention was not merely a simple form; rather, this was one element of a 5-year process to improve end-of-life care in Oregon nursing homes. It involved people from state government, nursing homes, acute care hospitals, and other stakeholders. They looked not just at written directives but also at state policies and institutional processes that supported or blocked their effective use. Given this context, it would be a mistake to focus too much on the POLST and to overlook the processes that led to its creation and apparently successful use. Indeed, the results reported might be attributable more to these processes rather than to the POLST form. More generally, it has been a fundamental mistake of the advance directive movement to focus on creating the perfect form and not attending to the psychological process of decision-making and the implementation of advance directives at the bedside. Based on research that relies on both qualitative8 and quantitative sources of information,5,9 I believe strongly that future emphasis must be placed on a rather complex intervention called advance care planning — a process of communication over time in which clinicians, patients, and their families (if the patient desires) are partners in establishing goals of care. Such goals must recognize when the patient has reached a self-defined, critical turning point in his/her disease trajectory. Finally, advance care planning requires the creation and maintenance of systems of care plans that aim to achieve those goals.10 We now have an important opportunity to improve end-of-life care. Let us learn from previous efforts and not oversimplify the process that Tolle and colleagues took to improve end-of-life care for nursing home residents in Oregon. For example, the Oregon task force worked with the Oregon Board of Medical Examiners to rewrite its regulations to allow Emergency Medical Technicians to respect patient wishes for life-sustaining treatment and comply with physician orders such as those recorded in the POLST.11 The task force also made education a priority, not only education about the mechanics of using the POLST form, but also counseling patients and families about treatment choices and the palliative care options for this frail, vulnerable population. When interpreting the results reported by Tolle and colleagues, it should be noted that this work took place at a time when the threat of legalization of physician-assisted suicide in Oregon was spurring a number of other efforts to improve and enhance the quality of medical care for dying patients and their families. Given this environment and the lack of a control group, one should be cautious about attributing outcomes to the introduction of the POLST form. Use of this one page form is an important, yet not sufficient, step in improving medical care for dying patients in long-term care and their families. Rather, a series of complex, interrelated interventions is needed to improve the quality of care of patients in long-term care and their loved ones. The POLST form bears only tangentially on a crucial issue in improving the quality of end-of-life care in nursing homes: inadequate symptom management and other palliative care for persons residing in long-term care. Today, such care is shockingly lacking for this frail and vulnerable population. Pain is undertreated in high number of nursing home residents.12–14 More than one in four nursing home residents with cancer who had daily pain did not receive any analgesia.12 Improving medical care for this vulnerable population requires attention to several areas. We must understand what nursing home residents and their families value regarding end-of-life care. Healthcare providers must be made aware of the opportunity to improve as well as the means to enhance quality of care through the use of appropriate palliative care interventions. Measurement is fundamental to creating this awareness and provides the means to track whether such improvements are obtained. Such measurement must include the patient and family perspective regarding the quality of medical care. What is so important about medical care at the end of life is whether we understand and meet patients’ and families’ expectations for medical care. The most important outcomes may not be decreasing CPR rates but, rather, the process of communication, negotiating about the goals of care, and meeting such expectations. Patient-centered reports, as created by Cleary and colleagues, represent an important assessment methodology to examine the quality of care of dying patients.15–17 Once aware of the opportunities for improvement, policy makers, healthcare providers, healthcare managers, and consumers must address both the organizational and legal barriers to improving medical care at the end of life. One important aspect of the Oregon effort is that it was very consciously tailored to that state's particular political, cultural, health system, and other characteristics. Thus, it cannot simply be copied but must be adapted if it is to contribute to improvements in care in other states. A final critical ingredient in improving care at the end of life is public demand for quality medical care at life's end. Dying in pain, isolated in the ICU of an acute care hospital, shackled to unwanted technology must now become unacceptable to all those directly and indirectly involved, including those who educate health professionals and those who assess the performance of practitioners and healthcare organizations.18,19 No proverbial magic bullet, no one simple intervention or “form” exists to create effective, humane care at the end of life. We must look beyond the “form” to understand the processes that Tolle and colleagues created around it. We must then adapt those processes to our own communities and commit ourselves to sustaining continued assessments of those processes over the long term. This will not be simple. It will, however, be necessary if we are to fulfill our obligations to dying people and those close to them.