Poorly Advanced Directives
Cared for at home by his wife and family, an 82-year-old man with multiple chronic medical conditions described his overall health as declining recently. He saw a primary care physician, received home nurse visits, and had recently been referred to a geriatrician. The primary physician realized the need for end-of-life discussions but always ran of out of time due to the complexity and acuity of the patient's medical conditions.
One afternoon, the patient presented to the emergency department (ED) and was admitted to the hospital for delirium, an underlying infection, and acute kidney injury. During the hospitalization, the primary team engaged the patient and his family in advanced directive discussions, and the patient ultimately decided (with his family's blessing) on a do-not-resuscitate/do-not-intubate (DNR/DNI) order. After treatment for his infection, he returned to his baseline health status and was discharged home. The change in code status was communicated to the patient's primary physician.
Two days later, the patient returned to the same ED with altered mental status and impending respiratory failure. En route, the paramedic asked the distraught family members about advanced directives and they expressed a desire that "everything be done" to save their loved one. Despite the previously documented DNR/DNI order, the patient was intubated and remained on mechanical ventilation for 3 days. The family ultimately decided to withdraw life-sustaining interventions, and the patient died peacefully soon afterward.
Advance directives were developed to ensure that patients receive care that is consistent with their preferences at the end of life, particularly when they cannot make their own health care decisions.(1) Recent evidence suggests their effectiveness at increasing the correlation between preferences and the type of care received near death.(2) However, traditional advance directives have limitations. They are often too vague to clearly direct the interventions a patient would want in specific illness scenarios, and are poorly integrated into patients' medical records and care.(1,3) As a result, providers are encouraged to perform advance care planning with their patients to ensure that patients' decisions are informed ones and providers understand their patients' wishes. Unfortunately, although advance care planning discussions are associated with higher patient satisfaction, they are infrequently completed in the outpatient setting.(4,5)
Provider- and patient-related barriers contribute to incomplete advance care planning in the outpatient setting. As illustrated in this case, providers often have limited time to care for their complicated patients and must balance many competing demands during each visit. Furthermore, providers may not be adequately trained to have these discussions and may fail to consistently initiate them. On the other hand, patients also may be reluctant to discuss end-of-life issues, particularly when their health is relatively stable. They may prioritize more pressing topics during outpatient visits. As a result, many seriously ill patients are admitted to the hospital without having discussed their wishes for care at the end of life.(3,6) The case presented is a common clinical scenario and one that could benefit from a systems-level approach.
Hospitalization is an advance care planning opportunity for many patients, as they are faced with acute health decompensations that prompt admission. Key aspects of advance care planning include deciding whether life-sustaining therapies such as mechanical ventilation and cardiopulmonary resuscitation (CPR) are consistent with patients' overall goals. Closed chest cardiac massage was originally developed in the 1960s and found to be highly effective for reversible causes of cardiac arrest such as anesthesia. As the use of CPR was expanded to all hospitalized patients, it became clear that the harms associated with CPR might outweigh the benefits for certain patients, such as those with terminal illness. Do Not Resuscitate (DNR) order policies emerged in the 1970s, and were required for hospitals seeking accreditation from the Joint Commission on Accreditation of Healthcare Organizations in the 1980s.(7,8) DNR orders were designed to be facility- and encounter-specific. Properly implemented DNR orders effectively prevent resuscitation attempts in more than 97% of hospitalized patients who have an order in place.(9) However, they are not valid after the patient is discharged or transferred to another hospital, a nursing home, or the community. This is the perhaps the most misunderstood limitation of DNR orders among providers and even patients. The case highlights a key limitation of DNR orders, which is that they aren't valid if a patient re-presents to the same facility after discharge.
To address limitations of traditional advance directives and DNR orders, the Physician Orders for Life-Sustaining Treatment paradigm, commonly known as POLST (http://www.polst.org), was developed. POLST orders translate a patient's general wishes for care into medical orders to provide or not provide specific treatments. The POLST form indicates patient preferences for resuscitation, the focus of interventions and hospital care, and specific treatments such as antibiotics and artificial nutrition (http://www.ohsu.edu/polst/programs/sample-forms.htm). Patients or surrogates complete the form in discussion with their provider, and the patient or surrogate, and a physician, must sign the form to make it valid. (In some states, nurse practitioners and physician's assistants may sign the POLST form; other states require witnesses.) The POLST form then accompanies the patient as he or she transfers between facilities or is discharged to the community. When a patient resides in a facility, the form is kept in the medical record. When a patient resides at home, it should be displayed in an obvious location (e.g., refrigerator or bedroom door) so that emergency response personnel can easily find it. Patients completing a POLST form are also advised to complete a traditional written advance directive and durable power of attorney. All of these documents, including POLST orders, promote active dialogue about patient wishes but can be changed by the patient (or their designated surrogate) and physician based on a patient's evolving health.
POLST programs exist in 14 states and are under development in 27 more. The programs are state-specific and vary due to state laws around issues such as consent to limit life-sustaining therapies, out-of-hospital DNR protocols, and surrogate decision-making. Establishing a POLST program includes assessment of current needs and state laws, development of a standardized form that is consistent with state laws, and training of health professionals and institutions to complete and honor the form. Information about POLST programs in individual states as well as a review of legal issues surrounding them can be found on the POLST Web site (http://www.ohsu.edu/polst/programs/state+programs.htm; http://www.ohsu.edu/polst/resources/legal.htm). Data from states using POLST orders indicates that they are useful to providers and effectively communicate patients' wishes across facility encounters. Emergency medical technicians find the forms useful in determining which treatments to provide (10), and the orders reduce unwanted interventions in both the nursing home and home hospice settings.(11,12)
In addition to POLST orders, a number of basic interventions can improve advance care planning discussions and the implementation of decisions made during these discussions. Though many providers worry about time constraints, effective discussions can occur in as little as 15 minutes.(13) In the outpatient setting, reminders about initiating the discussions can increase advance directive completion.(5) Best practices, such as eliciting patients' values, beliefs, and experiences, and their preferences in specific scenarios, have been described from experts' discussions to guide providers.(13) Targeted training programs have also been developed to teach providers these best practices.(14)
For the patient in this case, completing and signing a POLST order documenting his wishes before hospital discharge, may have prevented the subsequent aggressive interventions. However, the case also reinforces the critical importance of involving patients' family and caregivers to successfully implement any decision. Just as with DNR orders, family members generally cannot override a patient- and physician-signed POLST order. Accordingly, all efforts should be made to get patients, families, and providers on the same page before an acute event, to prevent confusion about the plan of care and distress for families and providers. Though surrogates are often unaware of patients' preferences for care in specific scenarios, their understanding can be improved through structured, facilitated interviews.(15) Even when surrogates are aware of patients' preferences, they are often unprepared to make life or death decisions during acute deteriorations. In these situations, families understandably want "everything" to be done to help their loved one.(16) Providers should prepare surrogates before acute situations arise, by presenting anticipated scenarios and discussing specifically which treatments will and will not be used to achieve the patient's goals.
In summary, achieving a successful system for advanced care planning is a multidimensional effort that requires collaboration between patients, families, and providers across practice settings. POLST orders facilitate the translation of patients' wishes into concrete medical orders and can help ensure that their wishes are followed across the continuum of care.
- Advance care planning discussions in the hospital are essential to ensure that seriously ill patients' care is consistent with their goals, values, and preferences.
- Limitations of traditional advance directives include that they are vague and subject to interpretation and not consistently or systematically implemented into medical orders.
- DNR orders are facility- and encounter-specific; they are not valid upon transfer to another facility or to the community, or upon re-presentation to the same facility after discharge.
- POLST orders are an effective tool to ensure that patients' wishes are followed across care settings and after they lose decision-making capacity.
- Providers in all settings should discuss anticipated health deteriorations and help patients and their surrogates understand which specific interventions will and will not be provided.
Wendy G. Anderson, MD, MS Assistant Professor
Division of Hospital Medicine and Palliative Care Program
University of California, San Francisco
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