End-of-Life discussions or advance care planning (ACP) with family and primary care providers can be challenging, but they are necessary to maintain patient autonomy and reach a well-informed decision. Studies have shown that less than 30% of survey participants have an advance directive. Most individuals with advance directives share similar characteristics: chronic illness, regular access to healthcare, higher income, higher education, and older age. Racial and ethnic disparities also have accounted for a lower percentage of advance directives, particularly among non-white respondents.
Advance directives may vary by state, but all are designed to outline care preferences in the event one becomes incapacitated. Initiating a discussion and implementation of an advance directive should include patient care preference regarding code status or cardiopulmonary resuscitation. Advance directives are legal documents but are not medical orders. Though many advance directives include preferences pertaining to cardiopulmonary resuscitation, they are not equivalent to Do-Not-Resuscitate (DNR) or Do-Not-Intubate (DNI) orders. Furthermore, some directives clearly specify exactly what is wanted for a given situation, while others, as noted above, remain vague. It is important to specifically illicit patient preference regarding DNR and DNI during an advance directive discussion. According to one study, it may be beneficial to start with two simple questions: “If you cannot or choose not to participate in health care decisions, with whom should we speak?" and "If you cannot or choose not to participate in the decision-making, what should we consider when making a decision about your care?” Though these questions may help initiate a dialogue, they do not specifically address patient care preferences regarding DNR and DNI, and further detailed discussions are needed. For select hospitalized patients without advance directives or DNR/DNI orders, physicians may find the discussion difficult but necessary. Unfortunately, there may exist a notion that do-not-resuscitate equates to do-not-treat. It is paramount that all parties involve understand do-not-resuscitate does not mean all treatments are discontinued and standard of care is not hindered by a DNR order. Gauging a patient’s or proxy’s understanding of the current condition and expectations can be a useful introduction to the discussion. The questions noted above can also be used to guide the physician but do not specifically address DNR or DNI preferences. Physicians educated in the skills necessary to have the discussions have led to an increase in patient preferences at end-of-life. Despite the evidence, however, junior physicians report little formal education regarding palliative or end-of-life issues and have cited hospital culture as a deterrent to engaging and learning more about the subject. Minimal training in end-of-life discussions and exposure to palliative care patients at the medical school level is another barrier to physician comfort in end-of-life care. Regardless, earlier and more complete discussions regarding a range of care preferences should be undertaken, and early involvement of a palliative care team may lead to better understanding of a DNR order. A multidisciplinary approach can further solidify the process by utilizing nursing and case management resources. Once patient care preferences are decided, an order in the form of a legal document is added to the medical record. It is important to note that different hospitals and States may use different documents to indicate DNR and DNI orders and include: Medical Orders for Scope of Treatment (MOST), Medical Orders for Life Sustaining Treatment (MOLST), Physician Orders for Scope of Treatment (POST) and Physician Orders for Life Sustaining Treatment (POLST). Unlike an advance directive, patient wishes including DNR and DNI preferences are conveyed as a medical order on a MOLST or POLST form.
Particularly in the office setting, there remain barriers to completing and implementing advance directives that are often physician and patient related. Physicians have sited discomfort with the topic and limitations on time and reimbursement as reasons to forgo the discussion. Patients identify fear, lack of knowledge, and cultural traditions as deterrents. Sadly, a common reason identified by both physicians and patients is waiting for the other party to initiate the discussion. Even when advance directives are made, there may still be barriers to implementation including vague language, proxy issues, and accessibility of the advanced directive. Physicians should encourage patients to avoid vague terminology and be explicit in care preferences and procedures. Including the health care proxy in the advance directive discussions ensures that the proxy is aware of the patient’s wishes and can further clarify any vague language or questions regarding patient care preferences. Finally, advance directives should be part of the medical record and readily available to the physician, proxy, and requested family members. Given the challenges cited, several studies have identified interventions that may increase advance directive completion rates. The most successful interventions are interactive and include repeated conversations over time. Group-based interventions that stimulate discussion and generate additional questions also have been successful. Several studies have produced good recommendations including a protocol-driven negotiation on goals of care. This protocol includes identifying the proper setting, assessing patient and proxy’s understanding and expectations and suggesting more realistic goals. Another approach for primary care physicians to utilize when initiating the discussion has been proposed. This approach can occur at multiple stages and involves interactive advance directive discussions. The stage to initiate the discussion is during a routine exam. There is no defined age to initiate the discussion, but it is generally recommended in patients 50 to 65 years of age. Advance directives should be reintroduced at the diagnosis of a progressive chronic disease and again following concern of increased frailty or dependence. Higher completion rates have been seen with mailing the forms to the patient prior to the initial discussion. These approaches can be used together or in isolation as there is no set guidelines on end-of-life issues and DNR discussions.
The importance of advance care planning cannot be emphasized enough. Though a challenging subject for both physicians and patients it is necessary to ensure patient autonomy and implement care preferences when patients are incapacitated. It is a proactive and continual process that may need to be revisited based on any changes in a patient’s medical condition. Currently, there are no set guidelines to instruct physicians, but the evidence does exist to guide conversations and improve implementation.