Introduction

End-of-life discussions or advance care planning (ACP) with family and primary care providers can be challenging. Still, 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
• Older age.

Racial and ethnic disparities also have accounted for a lower percentage of advance directives, particularly among non-White respondents.[1][2][3] 

Function

Advance directives may vary by state, but all are designed to outline care preferences if one becomes incapacitated. Initiating a discussion and implementing 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 about cardiopulmonary resuscitation, they are not equivalent to do-not-resuscitate (DNR) or do-not-intubate (DNI) orders. Furthermore, some directives specify exactly what is wanted for a given situation, whereas others remain vague. 

During an advance directive discussion, it is important to specifically illicit patient preference regarding DNR and DNI. According to one study, it may be beneficial to start with 2 simple questions:

1. With whom should we speak if you cannot or choose not to participate in health care decisions?
2. What should we consider when deciding on your care if you cannot or choose not to participate in the decision-making?

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. Physicians may find the discussion difficult but necessary for select hospitalized patients without advance directives or DNR and DNI orders.  Unfortunately, a notion may exist that DNR equates to do not treat. It is paramount that all parties involved understand that DNR does not mean all treatments are discontinued and that a DNR order does not hinder the standard of care. 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 for discussions have increased patient preferences at the end of life. 

Despite the evidence, 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 a better understanding of a DNR order. An interprofessional 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, including 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.[4][5][6]

Issues of Concern

Particularly in the office setting, there remain barriers to completing and implementing advance directives that are often physician- and patient-related. Physicians have cited 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 physicians and patients identify 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 have also 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 the 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 for patients 50 to 65. Advance directives should be reintroduced at the diagnosis of progressive chronic disease and again following concern of increased frailty or dependence. Higher completion rates were observed when mailing the forms to the patient before the initial discussion. These approaches can be used together or in isolation, as there are no guidelines for end-of-life issues and DNR discussions.[7][8][9][10]

Clinical Significance

The importance of advance care planning cannot be emphasized enough. Though a challenging subject for 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 guidelines to instruct physicians, but the evidence exists to guide conversations and improve implementation. Advance directives occur when the patient is hospitalized and during outpatient procedures with no admission orders. Interventions may still have a risk for adverse outcomes, such as anesthesia or procedural complications.

Advance directive documents are often many pages long and cover other legal issues, and the procedural team may not be familiar with the patient's wishes from prior encounters. It is, therefore, particularly important to address DNI and DNR status with the patient or their surrogate before interventions, especially those that do require intubation. Any temporary changes in DNR or DNI status should be documented in the chart before the procedure. DNR and DNI orders should be changed if necessary during the procedural period and then changed to the original order after the procedural period.

Enhancing Healthcare Team Outcomes

Each year, countless hours and dollars are wasted treating terminally ill patients. In many cases, a prior DNR may have resolved the problem. All healthcare workers are responsible for discussing DNR and advanced directive status with their patients. The goal is to educate the family and the patient that a DNR does not mean the patient will have a poor quality of life—just the opposite. It is vital to assure the family that the patient will be made comfortable and any pain issues will be addressed.