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Advance directives

Replacing myths with facts

Dobbins, Elizabeth H. PhD, MSN, RN, CNE

doi: 10.1097/01.NURSE.0000558102.43538.8f
Department: TRANSITIONS: Issues in palliative and end-of-life care
Free

AFTER 42 YEARS in nursing, I recently retired. Now home during the day, I allowed myself to return to a guilty pleasure—watching a well-known TV daytime soap opera. In a recent episode, a favorite character was shot at the altar on her wedding day. Complications ensued and she was placed on a mechanical ventilator. The plot thickened when her daughter discovered an advance directive that indicated she did not want artificial ventilation. The hospital administration said they would have to discontinue life support. To save his almost-wife, the husband-to-be and the physician, who both believed the heroine would recover, hid the ventilated patient so that hospital administrators wouldn't “pull the plug.” Of course, in true soap opera fashion, the patient did recover.

A ridiculous scenario, sure, but it's only TV, right? Except that this particular drama has 1.9 to 2.3 million viewers per episode.1 Many viewers observing the conflict between administration, family, and physician may have been left with the mistaken impression that written advance directives trump all, and that hospital administrators can “pull the plug” at will, regardless of prognosis and input from healthcare professionals and family. Persistent myths such as these cloud the public's understanding of the advance directive process.2

Provision 1.4 of the American Nurses Association's Nurses' Code of Ethics directs nurses to promote advance care planning conversations with their patients.3 To do so, they must understand the advance care planning process themselves. This article presents a review of the advance care planning process in the context of six persistent myths that may discourage patients from completing advance directives.

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Myth #1: Advance directives are designed primarily for older adults.2,4

Advance directives protect the rights of adults of all ages. They originated with the consumer rights movement of the 1960s and 1970s, when the use of artificial resuscitation and other clinical and technologic advances in healthcare sometimes resulted in provision of unwanted care, unnecessary suffering, and futile treatments at the end of life.5 Several Supreme Court cases gave rise to the passage of the Patient Self-Determination Act of 1990, which requires hospitals, skilled nursing facilities, home healthcare agencies, hospice programs, and health maintenance organizations that accept federal funds to provide all adult patients with information about their rights regarding healthcare decision-making and offer them an opportunity to prepare advance directive documents.6

Because accidents and medical crises occur unpredictably, the National Academy of Medicine (previously called the Institute of Medicine) recommends that advance care planning discussions with family and care providers take place at any age, regardless of a person's state of health.7 It is worth remembering that Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo were healthy women in their 20s when they entered a persistent vegetative state. These well-publicized cases spurred the national interest in end-of-life legislation about withdrawal of treatment.8

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Myth #2: Patients need a lawyer to prepare advance directive documents.

Although many lawyers include advance directives in estate planning, advance directive documents are designed to be completed by members of the public without assistance from a lawyer. If someone needs assistance, many resources are available in local communities at senior citizens' centers, medical facilities, and online. The CDC has posted a comprehensive list of advance care planning resources at www.cdc.gov/aging/pdf/acp-resources-public.pdf.9

Generally, advance directive forms contain two main parts. The first part is the living will, in which the person preparing the document identifies his or her care preferences. This information directs the healthcare team in the event of an irreversible condition or emergency during which the person is unable to communicate. Using this form, patients can identify which life-prolonging interventions, such as CPR, renal dialysis, blood transfusions, or artificial ventilation, are acceptable to them.

The second part of the advance directive form is the durable power of attorney for healthcare. In this part of the document, the patient identifies a healthcare agent who will make healthcare decisions if the patient is mentally or physically unable to do so. This agent should be someone the patient knows well and trusts, and who understands the patient's goals, values, and preferences for care. In appropriate circumstances, this healthcare agent must be willing to advocate for the patient to ensure the patient receives the desired level of treatment. It is imperative that the chosen agent understands and accepts the responsibilities of the role.

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Myth #3: Once a healthcare agent is named, the patient gives up the right to make his or her own decisions.2,4

The healthcare agent takes over decision-making responsibilities at a time of the patient's choosing. This transfer of authority usually occurs when the patient is unable to communicate, as in cases of critical illness, but may also happen if the patient no longer chooses to make his or her own decisions. Competent patients should be reassured that they always have the right to override decisions made by their agent and to revoke or modify their advance directive documents at any time.

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Myth #4: Advance directives must be written on the state's statutory form to be valid.2

Use of a state-specific form is recommended to provide consistency within the state and ensure conformity with state laws. However, clearly communicated treatment wishes should be respected in any manner or form expressed, whether written or spoken, as long as they are medically appropriate.5

To simplify and provide consistency in the advance directive process, all 50 states have identified specific advance directive documents. Because the forms vary from state to state, use of the form from the person's state of residence is recommended. Often available online, these forms are designed to help healthcare professionals recognize them easily and locate critical information. The documents should be completed as directed and are legally valid as soon as they are signed and witnessed. Copies should be distributed to the healthcare agent, healthcare providers, hospital, and any others who might be asked to speak on the patient's behalf. Advance directive documents should be updated as needed and kept where they will be readily available, not in a safety deposit box.

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Myth #5: A living will is necessary to stop futile treatment at the end of life.2

If the care being provided to a patient is found to be unhelpful, treatment may be stopped by the healthcare team or by a competent patient at any time. If the patient is unable to communicate, care decisions will be made after consultation with the healthcare agent and/or family.

In situations where conflict arises between healthcare providers and family, an ethics committee consultation may be requested. Ethics committees review ethical or moral questions that may come up during the patient's care and facilitate communication between the patient (if competent), family, and treatment team to assist everyone in making appropriate choices.

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Myth #6: No medical care will be provided if the patient possesses advance directive documents.2,4

Assure patients that the presence of an advance directive does not mean “do not treat.” Advance directives communicate patients' treatment wishes so they will be treated the way they want to be treated if they cannot communicate their wishes. If curative care is not possible or desired, the documents can direct care providers to deliver hospice and/or palliative care, which includes pain management, and emotional, social, and spiritual support for both patients and their families.

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Why facts matter

In a health crisis, properly completed advance directive documents reduce the decision-making burden on the family and medical staff who are attempting to provide wanted care to the person in need. Studies have confirmed that advance directives help ensure provision of care in accordance with the patient's wishes, fewer invasive treatments at the end of life, reduced hospitalizations, increased use of hospice services, and increased likelihood that terminally ill patients will die in their environment of choice.5 Yet despite all the evidence supporting the value of advance directives, they remain underused. Two recent studies addressing the completion of the documents found only 26.3% to 36.7% of US adults have prepared them.10,11

By 2030, all baby boomers will be over age 65 and one out of every five US residents will be at retirement age.12 As the population ages, more sophisticated and life-extending technology will become available in both hospital and home healthcare settings, adding complexity to care choices. Respecting the patient's end-of-life wishes promotes an acceptable quality of life at the end of life.

Nurses who understand the advance care planning process can positively impact the type and quality of care provided at the end of life. Nurses can advocate for the completion of advance directives by providing accurate information about the documents and the advance directive process and encouraging the completion of the documents. They should be on the lookout for opportunities to correct persistent myths about advance directives and other health-related topics, as misinformation may be promoted in surprising places—even in the plot of a soap opera.

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REFERENCES

1. Soap Opera Network. Ratings report for the week September 17-21. 2018. http://www.soapoperanetwork.com/2018/10/ratings-report-for-the-week-september-17-21-2018.
2. Sabatino CP. Top ten myths and facts about health care advance directives. Bifocal. 2015;37(1):6–9.
3. American Nurses Association. Code of Ethics with Interpretive Statements. 2015. http://www.nursingworld.org.
4. Warm E, Rosielle DA. Fast facts and concepts #12: myths about advance directives. Palliative Care Network of Wisconsin. 2018. http://www.mypcnow.org/blank-uyyry.
5. Detering K, Silveria MJ. Advance care planning and advance directives. UptoDate. 2018. http://www.uptodate.com.
6. Patient Self-Determination Act of 1990. HR 4449 101st Congress (1990). http://www.congress.gov/bill/101st-congress/house-bill/4449.
7. Institute of Medicine. Report Brief. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. 2014. http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2014/EOL/Report Brief.pdf.
8. Annas GJ. “Culture of life” politics at the bedside—the case of Terri Schiavo. N Engl J Med. 2005;352(16):1710–1715.
9. Centers for Disease Control and Prevention. Advance care planning—selected resources for the public. http://www.cdc.gov/aging/pdf/acp-resources-public.pdf.
10. Rao JK, Anderson LA, Lin FC, Laux JP. Completion of advance directives among U.S. consumers. Am J Prev Med. 2014;46(1):65–70.
11. Yadav KN, Gabler NB, Cooney E, et al Approximately one in three US adults completes any type of advance directive for end-of-life care. Health Aff (Millwood). 2017;36(7):1244–1251.
12. U.S. Census Bureau. Older people projected to outnumber children for the first time in U.S. history. News release. March 13, 2018. http://www.census.gov/newsroom/press-releases/2018/cb18-41-population-projections.html.
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