Advance directives are legal documents that are completed in advance of the need for major medical decisions to specify which healthcare options are or are not desired, at present or in the future, and to designate an individual(s) who will speak on the patient's behalf if the patient cannot speak for his or herself. Variations in advance directive laws exist by state. Many states now have Physician Orders for Life-Sustaining Treatment (POLST), Medical Orders for Life-Sustaining Treatment (MOLST), Medical Orders for Scope of Treatment (MOST), Physician Order for Scope of Treatment (POST), Do Not Resuscitate Order/Clinician Orders for Life-Sustaining Treatment (DNR/COLST), Transportable Physician Orders for Patient Preferences (TPOPP), or similar directives that put the salient points of the advance directive in the form of a medical order. For the sake of brevity, the term POLST will apply to all of these variations in the remainder of the article.
Advance directives fall primarily under the medical ethics concept of autonomy or self-determination. Other ethical concepts such as beneficence (do good for the patient), nonmaleficence/non-malfeasance (do no harm), and distributive justice (appropriate distribution of finite resources) are also involved.
End-of-life scenarios can introduce conflict between these ethical principles. Advance directives serve as written instructions to allow the patient to express their wishes and retain some control of their treatment plan in the event they may be incapacitated near the end of life. This is based on the concept of precedent autonomy or following the patient's directives documented at an earlier time when they still possessed capacity. Advanced directives also provide a record to guide the healthcare surrogate and providers in their attempt to treat the patient according to their presumed wishes in nuanced or changing situations, a concept referred to as substituted judgment.
Additional ethical complexities arise when the patient is a child or has advanced dementia. With children, conversations regarding advance directives and treatment choices at the end of life are somewhat dependent on the child's maturity, capacity, and understanding of their illness. Respect for a child's autonomy indicates the child should participate in expressing their wishes to the extent they are able. In cases of advanced dementia, it is often beneficial to have advance directives documented prior to the patient losing their capacity to express their wishes. When this has not been possible, decision-making falls to the health care surrogate. The health care surrogate can employ the concepts of substituted judgment, beneficence, and non-maleficence, or a blend of these principles in their decision-making.
Congress enacted the Patient Self Determination Act in 1990, which mandated that healthcare institutions receiving Medicare and Medicaid funds provide patients with information regarding their right under state law to be involved in decisions regarding their own medical treatment. It also mandates that patients be asked if they have advanced directives or be given information regarding advance directives and that the advance directives be implemented if necessary as long as they are compliant with state law.
Issues of Concern
Types of Advance Directives
Durable Power of Attorney/Healthcare Power of Attorney/Healthcare Surrogate
A health care surrogate (also referred to as a health care power of attorney or health care proxy) is a person authorized to make medical decisions on behalf of the affected patient if they become incapacitated and unable to express their wishes. Best practice indicates that patients should discuss their wishes with their designated surrogate ahead of any potential emergency or end-of-life scenario. It is presumed that the surrogate will make decisions based on their understanding of what the patient would have wanted for themselves. State laws vary on who may assume the role of health care surrogate if none was previously designated. Often it is a legal guardian, spouse, adult child, or parent, and in some states, any interested party such as a neighbor or friend who held a close relationship with the patient. As long as a patient has decision-making capacity and competency, they retain their decisional autonomy. If they are unable to speak for themselves, healthcare providers are obligated to seek direction from the healthcare surrogate or, when no surrogate is available, to make medical decisions in the best interest of the patient based on their clinical judgment. Ethics committees can be called upon to resolve conflicts or guide medical providers in complicated situations.
This document is completed with or without the use of an attorney to specify the healthcare desires of the individual. These choices most commonly include cardio-pulmonary resuscitation (CPR) and endotracheal intubation/mechanical ventilation. Refusing these interventions is often documented as Do Not Resuscitate (DNR), Allow Natural Death (AND), and/or Do Not Intubate (DNI). Additional options that can be considered in these documents include percutaneous endoscopic gastrostomy (PEG) tubes, also known as feeding tubes, which are essentially contraindicated in patients with severe dementia. The potential use of artificial nutrition and hydration, dialysis, and antibiotics are also addressed.
In the vernacular, these options are often lumped together under terms such as heroic measures, extreme measures, or life-saving, life-sustaining, or life-prolonging treatments. Under the patient's right of self-determination, they can refuse any form of treatment, even if that treatment would be likely to prolong life. They also allow a patient to describe in greater detail their concept of a desirable quality of life relative to illness, prognosis, and comfort.
While the patient can refuse any treatment (negative autonomy), patients do not have the right to demand treatments that are not medically indicated, are more likely to cause harm than good, or violate the professional's right of conscience, as positive autonomy is not as broad as negative autonomy. For a living will to "go in effect" or be enacted, it usually requires two physicians to declare the patient to be terminally ill, suffering from an incurable illness, or in a permanent comatose state; however, state laws can vary.
Do Not Resuscitate Order (DNR)
A DNR is a written document usually signed by the patient's health care provider that states the patient's wishes to refuse resuscitative efforts. These written orders are the only advance directives that emergency management service providers are legally obligated to consider in most states. The patient may elect which resuscitative procedures they wish to accept or refuse. Professionals should educate patients and surrogates regarding the fairly poor outcomes of CPR (11.1% survival for out-of-hospital cardiac arrest for elderly patients).
Physician's Orders for Life-Sustaining Treatment (POLST)
The POLST form is a newer advance directive. It exists as an agreement between the doctor and the patient regarding their condition. It summarizes the patient's wishes and records them as medical orders. In states that recognize the POLST form, the medical orders carry throughout the healthcare system in all settings, including the prehospital setting. However, depending upon where the patient lives, a POLST could be void if it contradicts a pre-existing living will. In other states, the POLST can replace the living will as it is more fluid and can be adjusted more easily as the patient's condition changes, and can be completed by the surrogate rather than the patient. See the National POLST Paradigm for more information. Depending upon the laws of the various states, some states might require a physician's signature on the form, while others might allow nurse practitioners (ARNP) or physician assistants (PA) to provide the authorizing signature.
It is important to note that advance directives do not exist to deny all care to patients and that, especially with terminally ill patients, comfort care and pain management continue to be provided. Attempts to provide comfort are always appropriate.
Advance directives are used if the individual cannot give informed consent or refusal due to incapacity. Capacity can fluctuate with time, disease severity, and each individual decision. A patient is found to have the capacity for informed consent if they are capable of the following four 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 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?
Advance Directives can be general or specific. Most will address whether the patient would want aggressive medical interventions such as cardiopulmonary resuscitation (CPR), treatment in an intensive care unit, or mechanical ventilation. They also often address less aggressive measures such as administration of IV fluids, artificial nutrition, feeding tubes, admission to the hospital, or antibiotics.
Most advance directives include the “durable powers of attorney for health care” and “health care proxy appointment,” which allow individuals to appoint someone else to make health care decisions if they are rendered incapable of making their wishes known. The appointed health care proxy or surrogate has the same right to request or refuse treatment as the individual would have had if still capable of making and communicating health care decisions. Newer advance directives contain enriched content to assist individuals and their appointed agents, families, and clinicians to better understand and honor the patient's wishes. The American public is becoming increasingly comfortable with having "online" discussions, and the use of telemedicine or patient portals for electronic health records might provide newer and more innovative methods to help make sure these difficult but important discussions take place.
Clinicians need to be familiar with the medical and legal requirements of all forms of advance directives to fulfill the wishes of patients and their families. Also, it should be noted that no advance directive can cover all interventions for all conditions in all situations. The document would be so long and complicated that it would be rendered essentially useless in an emergent situation. Therefore, the surrogate should be familiar with the patient and the nuances of care that might be desired under different circumstances. For example, a patient with lung disease might have a "Do Not Intubate" order, but rather than being a concrete decision, the patient's intended meaning is that they do not want to be on life support for an extended period. In these cases, time trials of interventions can be attempted. If the patient fails to respond to the treatment within a set period, treatments can be withdrawn or withheld.
Advance directives were developed to respond to the increasing sophistication of medical technology. Numerous studies have documented critical deficits in the care of the dying, finding it unnecessarily expensive, prolonged, painful, and emotionally stressful to patients and families. Many potential interventions can be done for the patient that may not actually improve the quality or duration of life. Aggressive medical intervention may leave patients confined to nursing homes or dependent on feeding tubes for survival. Many patients are kept alive in a comatose or permanent vegetative state with a poor quality of life. Having an advance directive completed before approaching the end of life can reduce the amount of and subsequent cost of medical interventions incurred in the last months of life.
The legality and scope of advance directives can vary by state, creating difficulty for patients that may cross state borders to receive medical care. Some states only recognize living wills and health care proxies in a hospitalized setting. Some states require EMS providers to provide resuscitative care unless state-approved advance directive documents are provided.
Enhancing Healthcare Team Outcomes
All healthcare workers, whether physicians, nurse practitioners, physician assistants, nurses, social workers/counselors, chaplains, or others, should regularly discuss advance directives with patients. These disciplines bring a variety of skill sets that can work together toward better outcomes. The discussion should be undertaken before an acute illness strikes and revisited or updated periodically. Many medical and surgical specialty societies recommend discussions of advance directives and goals of care in clinical practice guidelines. It is considered good practice to ask about advance directives upon hospital admission as well as during annual wellness visits, particularly among the geriatric population or those with life or capacity-limiting diagnosis.