Advance Directives

Function

Advance directives primarily fall within the realm of medical ethics, specifically the concept of autonomy or self-determination. However, other ethical principles, including beneficence (do good for the patient), nonmaleficence or non-malfeasance (do no harm), and distributive justice (appropriate distribution of finite resources) are also relevant and play a role in the context of advance directives.[2]

End-of-life scenarios can often give rise to conflict among these ethical principles. Advance directives, functioning as written instructions, enable patients to express their desires and maintain control over their treatment plan if they become incapacitated near the end of life. This practice is based on precedent autonomy, wherein the patient's directives documented during a prior period of capacity are followed.[3] Advanced directives also serve as a valuable record to assist healthcare surrogates and providers in delivering care that aligns with patients' wishes, particularly in nuanced or evolving situations. This concept is commonly known as substituted judgment.[4] 

Additional ethical complexities arise in cases where the patient is a child or experiences advanced dementia.[5][3] When engaging in conversations regarding advance directives and treatment choices about end-of-life scenarios with children, it is important to consider the child's maturity, capacity, and understanding of their illness. Respecting a child's autonomy means that they should be included in the discussion and given the opportunity to express their wishes to the best of their abilities.[6] In situations involving advanced dementia, it is generally advantageous to have advance directives documented before the patient loses their capacity to communicate their preferences. However, in certain cases where this has not been possible, the decision-making responsibility falls upon the healthcare surrogate. The healthcare surrogate can make decisions based on various principles, such as substituted judgment, beneficence, nonmaleficence, or a combination thereof, to ensure that the patient's best interests are upheld.[4]

In 1990, the Patient Self Determination Act was enacted by Congress, which mandated healthcare institutions that receive Medicare and Medicaid funding to inform patients about their rights, as defined by state laws, to participate in decisions concerning their medical treatment. This legislation also directs that patients should be asked if they possess advance directives or be provided with information regarding advance directives. In addition, if necessary, advance directives should be implemented as long as they comply with the state law requirements.[7] 

Issues of Concern

Types of Advance Directives

Various types of advance directive documents exist, often overlapping in coverage and activation timing. The predominant health care advance directives are the living will and the durable power of attorney for health care. Nonetheless, numerous other forms serve specific purposes in patient care.

Durable Power of Attorney, Healthcare Power of Attorney, and Healthcare Surrogate

A healthcare surrogate, also known as a healthcare power of attorney or a healthcare proxy, is an individual who is authorized to make medical decisions on behalf of an incapacitated patient who is unable to communicate their wishes. Best practice suggests that patients should engage in discussions about their wishes with their designated surrogate well in advance of any potential emergencies or end-of-life scenarios. By having these discussions, it is presumed that the surrogate will make decisions based on their knowledge and interpretation of what the patient would have desired for themselves in such circumstances. The laws regarding the designation of a healthcare surrogate vary from state to state. In cases where the patient has previously designated no surrogate, state laws typically outline who may assume the role. Commonly, a legal guardian, spouse, adult child, or parent is given priority to act as a surrogate. However, in certain states, any interested individual who has a close relationship with the patient, such as a neighbor or friend, may be eligible to serve as a surrogate.

As long as a patient possesses decision-making capacity and competency, they maintain their autonomy to make their own decisions. However, when a patient is unable to communicate their wishes, healthcare providers have a responsibility to consult the designated healthcare surrogate. In cases where no surrogate has been appointed, healthcare providers must act in the patient's best interest, relying on their clinical judgment to make medical decisions on their behalf. In complicated situations, or when conflicts arise, ethics committees can be called upon to help resolve the issues or provide guidance to medical providers.[8][9]

Living Will

This document can be completed by an individual, with or without the assistance of an attorney, to specify their healthcare preferences. A living will commonly includes choices regarding cardiopulmonary resuscitation (CPR) and endotracheal intubation or mechanical ventilation. The decision to refuse these interventions is often documented as DNR, Allow Natural Death (AND), or Do Not Intubate (DNI). These documents can also address additional options, such as the use of percutaneous endoscopic gastrostomy (PEG) tubes, commonly referred to as feeding tubes, which are generally not recommended for patients with severe dementia.[10] Furthermore, these documents may address the individual's preferences regarding the potential use of artificial nutrition and hydration, dialysis, blood products, and antibiotics.[1] 

In the vernacular, these options are often collectively referred to as heroic or extreme measures, or lifesaving, life-sustaining, or life-prolonging treatments. However, as part of a patient's right to self-determination, they can refuse any form of treatment, even if that treatment could potentially prolong their life. These documents also provide an opportunity for patients to express their preferences in greater detail, particularly regarding their desired quality of life in relation to their illness, prognosis, and level of comfort.[1] 

While patients have the right to refuse any treatment based on their autonomy (negative autonomy), they do not have the right to demand treatments that are not medically indicated, likely to cause harm, or that violate the professional's right of conscience, as positive autonomy is not as broad as negative autonomy.[11] In order for a living will to take effect or be enacted, it usually requires the assessment and declaration of 2 physicians stating that the patient is terminally ill, suffering from an incurable illness, or in a permanently comatose state. However, it's important to note that state laws regarding living wills may vary. 

Do-Not-Resuscitate Order (DNR)

A DNR is a written document that is usually signed by the patient's healthcare provider, which expresses the patient's desire to refuse resuscitative efforts. In most states, these written orders are the only advance directives that Emergency Medical Service (EMS) providers are legally obligated to consider. Patients have the ability to specify which resuscitative procedures they wish to accept or decline. Healthcare professionals have the responsibility to educate patients and their surrogates about the relatively low success rates and potential outcomes of CPR. For instance, statistics indicate that survival rates for out-of-hospital cardiac arrest in patients aged 65 and older are only around 11.1%.[12][13]

Physician's Orders for Life-Sustaining Treatment (POLST)

The POLST form is a relatively new type of advance directive that serves as an agreement between a patient and their healthcare provider, regarding the patient's condition. The POLST documents the patient's medical conditions, summarizes their wishes regarding any treatment, and records their wishes as medical orders. In states that recognize the POLST form, these medical orders carry across all healthcare settings, including the prehospital setting.

However, it is essential to note that depending on the patient's place of residence, the POLST form could be considered void if it contradicts a preexisting living will. On the other hand, in certain states, the POLST can replace the living will as it offers more flexibility and can be adjusted more easily to accommodate changes in the patient's condition. Moreover, the surrogate can complete the POLST healthcare form rather than the patient themselves. For further information, please refer to the National POLST Paradigm to explore the specific guidelines and regulations related to the POLST form in different states. Depending upon the laws of the various states, the requirements for who can provide the authorizing signature on a POLST form can vary. In some states, a physician's signature may be required on the form, whereas, in other states, the authority to sign the POLST form may be extended to nurse practitioners (ARNP) or physician assistants (PA).

When patients choose a DNR order or opt for comfort care measures only, it does not mean they are rejecting all forms of medical care. Regardless of these choices, healthcare providers will continue to offer comfort care and pain management to the patients ensuring their well-being and alleviating their suffering. Attempts to provide comfort and minimize suffering are always appropriate.

Clinical Significance

Advance directives are utilized when an individual cannot provide informed consent or refuse due to incapacity.[1] The capacity to make decisions can indeed fluctuate based on multiple factors, such as time, the progression of the disease, the severity of the condition, and the complexity of the decision at hand. A patient is considered to have the capacity for informed consent if they are capable of demonstrating the following 4 basic capacities:

• Understanding: Can the patient understand the information presented to them? 
• Appreciation: Can the patient appreciate how this information relates to their circumstances?
• Reasoning: Can the patient compare different options and infer the associated consequences of a choice as it relates to their values? 
• Expressing a choice: Can the patient communicate their preferences and decisions?[6][14]

Advance directives can be general or specific instructions. Often, they address the patient's preferences regarding aggressive medical interventions, such as CPR, treatment in an intensive care unit, or mechanical ventilation. However, advance directives often address less-aggressive measures such as the administration of intravenous (IV) fluids, artificial nutrition, the use of PEG tubes, blood products, antibiotics, or the decision to admit the patient to the hospital. 

Many advance directives include provisions for “durable powers of attorney for health care” and “healthcare proxy appointment,” which allow individuals to designate someone else to make healthcare decisions on their behalf if they become incapable of expressing their wishes to the providers. The appointed healthcare proxy or surrogate possesses the same authority to request or refuse treatment as the individual would have had if they could still make and express healthcare decisions independently. Modern advance directives contain enriched content to assist individuals and their appointed agents, families, and clinicians to better understand and respect the patient's wishes. The American public is becoming increasingly comfortable with having "online" discussions; therefore, the use of telemedicine or patient portals for electronic health records might provide newer and more innovative methods to help ensure that these challenging but important discussions take place.[15]

Clinicians must have a comprehensive understanding of the medical and legal requirements associated with all forms of advance directives to fulfill the healthcare preferences of patients and their families. However, it should be noted that no advance directive can comprehensively cover all possible interventions for every medical condition in every conceivable situation. Attempting to include every detail would result in an excessively long and complicated document, rendering it practically ineffective in emergencies. Therefore, the designated surrogate should be familiar with the patient and the nuances of care that might be desired under different circumstances. For instance, a patient with lung disease might have a DNI order, but it should be understood that this decision does not necessarily mean a complete refusal of all interventions. Instead, it may indicate the patient's preference to avoid prolonged life support measures. In such cases, it is appropriate to consider time-limited trials of interventions. If the patient does not respond positively within a specified period, it may be appropriate to withdraw or withhold further treatments in accordance with the patient's wishes and the best interest of their care.

Other Issues

Advance directives were developed in response to medical technology's advancing sophistication and capabilities. Numerous studies have revealed significant shortcomings in end-of-life care, resulting in unnecessarily high costs, prolonged suffering, and emotional strain for patients and their families. Often various interventions administered to the patients may not enhance the quality or duration of their lives. Aggressive medical treatments can sometimes result in patients becoming dependent on nursing homes or relying on PEG tubes for their survival. In certain cases, patients may be kept alive in a comatose or permanently vegetative state, experiencing poor quality of life. Therefore, by completing an advance directive, individuals can reduce the number and subsequent expenses associated with medical interventions during the final months of their lives.[16][17][18]

The legality and scope of advance directives can differ from state to state, which can pose challenges for patients seeking medical care across state borders. Certain states may only recognize living wills and healthcare proxies within a hospital setting. Other states may require EMS providers to provide resuscitative care unless state-approved advance directive documents are provided.[1]

Enhancing Healthcare Team Outcomes

Physicians, nurse practitioners, physician assistants, nurses, social workers or counselors, chaplains, and other healthcare professionals should regularly discuss advance directives with their patients. Each discipline brings unique skills and expertise that can work together and contribute toward improved patient outcomes. These discussions should ideally occur before the onset of an acute illness and should be revisited or updated periodically to ensure alignment with the patient's wishes. Numerous medical and surgical specialty societies recommend the inclusion of advance directives and goals of care discussions in their clinical practice guidelines. It is considered a good practice to inquire about advance directives upon hospital admissions and annual wellness visits, particularly for the senior population or individuals with life- or capacity-limiting diagnoses.[19][20][21]