Ethical Concerns Surround Accessibility and Documentation of Advance Care Plans

By Stacey Kusterbeck

As a bedside nurse in the medical intensive care unit (ICU), Marlena Fisher, PhD, RN, noticed that few patients had an advance directive or living will. Those who did often were of higher socioeconomic status. “These observations made me curious about how those with fewer resources prepared for end-of-life decisions and if cultural preferences exist,” says Fisher, currently nursing inquiry coordinator at Johns Hopkins Hospital.

“Once I started exploring the literature during my doctoral studies, I found the lack of advance care planning in those with kidney failure on dialysis to be startling,” adds Fisher. Those dependent on dialysis have a limited prognosis similar to some types of advanced cancers. Moreover, although Black adults are more likely to be diagnosed with kidney failure, the completion of formal advance directive documents is less common in Black adults than in white adults. “Many Black adults prefer informal advance care planning methods, such as conversations with family or friends,” observes Fisher. Fisher and colleagues conducted a study on informal advance care planning conversations with family in Black adults with kidney failure.¹ The researchers surveyed 301 respondents. Most (66%) participated in informal advance care planning. About one-third (37%) had completed a written advance directive.

For clinicians, an important consideration is that simply asking about advance directive completion is insufficient. “They need to ask their patients if they’ve had conversations about their advance care planning wishes with family members or friends, and if they feel comfortable sharing what their preferences are,” says Fisher. The study also found that having a recent hospitalization is a key event that makes some people evaluate their advance care planning goals. “That is an important event for providers to engage in these conversations and provide resources that enable their patients to engage in advance care planning conversations with their family and friends,” says Fisher.

Ethicists can facilitate advance care planning discussions by helping to switch the focus of advance care planning to values and life goals. This contrasts with the current paradigm that is focused on specific medical treatments. “Currently, we ask lay people which medical treatments they would want or not want if their health declined further in the future,” says Fisher. Fisher says that clinicians instead should focus on values-based questions such as: How do you prefer to live near the end of life — at home or in the hospital or another facility? Do you prefer to receive nutrition orally only or via tube feedings? What types of music do you want to listen to? Such questions allow healthcare providers to glean insights about what is important to the person, in contrast to questions about dependence on specific technologies (such as whether the person wants to be resuscitated or intubated). “Conversations on values and life goals tend to be iterative in nature. They are not a single conversation at one point in time, but one that should be revisited throughout one’s life. And it is never too early to start!” says Fisher.

Mistrust of the healthcare system can cause individuals not to trust documents restricting the treatments that they receive in the future. Some people may feel more comfortable recounting conversations about their values and life goals that they have had with a trusted family member or friend. “These patient preferences can be recorded in a designated place in the electronic health record, so they can guide future discussions with the patient and family,” says Fisher.

In cases where there is no documentation and there was no conversation, surrogates and the medical team find themselves with no information to guide treatment decisions, other than their knowledge of the person and their medical condition. An ethics consult can be helpful in these cases. “The issues that come up in ethics consultation exemplify the work that is needed to better prepare everyone for the advance care planning decisions that occur at the end of life, in a way that honors their values and cultural preferences and provides guidance to their family. It is truly one of the few things that we all have in common,” says Fisher.

Clinicians may overestimate the prognosis, which can delay advance care planning conversations, says Jessica Ma, MD, MHSc, an assistant professor at Duke University School of Medicine and physician in Geriatrics and Extended Care at the Durham VA Health System.

Ma and colleagues conducted a study to examine whether notifications about hospitalized patients at high risk of a poor prognosis could prompt physicians to initiate and document these conversations.² The researchers compared 70 attending physicians who cared for a total of 314 inpatients at high risk of mortality. Half of the physicians received an email and page notification for patients who were at high risk of 30-day and six-month death, based on a machine learning model. The messages recommended that the physician document an advance care planning discussion. Patients of physicians in the intervention group were more likely to have a documented advance care planning conversation. “Prognostic email and page notifications, while simple, can meaningfully change physician practice around advance care planning,” concludes Ma.

Despite increased documentation by attendings who received these notifications, overall advance care planning documentation did not significantly change (52.8% vs. 42.8%). “These prognostic notifications changed the practice of the targeted physician but did not influence the overall care team,” notes Ma. Additionally, researchers observed a shorter length of stay in the intervention group.

“Beyond the notification itself, an intervention that encourages clinicians to document advance care planning conversations needs to consider the underlying clinical workflow,” says Ma. For example, it is important to consider how clinicians find and document advance care planning in the electronic health record.

Although ethicists play an important role in facilitating advance care planning interventions, they should consider clinician autonomy in deciding whether advance care planning is appropriate and, therefore, consider prognostic notifications as prompts and not as mandates, cautions Ma.

One potential challenge is difficulty locating advance care planning documentation, especially if it is not recorded in the usual location in the electronic health record. “Additionally, documentation may not fully capture all information discussed with the patient and/or family,” says Ma.

Occasionally, an advance directive is located after a life-sustaining intervention already has been started, such as intubation or intermittent hemodialysis. “This engenders additional ethical complexities,” says Jordan Potter, PhD, HEC-C, director of ethics at Community Health Network in Indianapolis.

For healthcare providers, it is fairly straightforward to not initially offer an intervention based on a patient’s advance directive. However, it is a much different story to actively withdraw an intervention that already was implemented, based on the newly located advance directive. “The facts of the case may have changed,” says Potter. For example, the patient may be significantly benefitting from the intervention. The patient may have a good chance of recovering but requires another day or two before being ready to stop the life-sustaining intervention. “Stopping an already implemented intervention is conceptually different from not starting an intervention altogether. It’s not necessarily equivalent — practically or ethically — to the situation that the advance directive is speaking to,” says Potter.

For example, a patient may have been intubated for respiratory failure resulting from advanced chronic obstructive pulmonary disease. A newly found advance directive indicates a desire to avoid cardiopulmonary resuscitation and intubation in the event of cardiopulmonary arrest or distress. The directive was the result of the patient’s desire to avoid a poor quality of life or being dependent on a ventilator to live. “If, in this scenario, the patient is unlikely to improve to the point of extubation and will need a tracheostomy for long-term mechanical ventilation, then the ethically appropriate course of action is likely to proceed with compassionate extubation consistent with the patient’s advance directive,” says Potter. On the other hand, the patient’s condition may be such that extubation and recovery is a realistic possibility if given another few days to recover. In that case, continuing the life-sustaining intervention to assess for recovery may be ethically justifiable, and consistent with the patient’s fundamental values and goals as stated in their advance directive. Ethicists can be helpful to medical teams in addressing these complex cases. “Ethicists can gather all of the relevant information and assist the team in determining the most ethically appropriate option,” says Potter.

Ideally, the medical team is fully aware of any advance directives prior to providing care. “The easiest way to do this is to standardize the methods for communicating and viewing advance directives in the electronic medical record,” advises Potter. Having a specific advance care planning tab or using specialized advance care planning programs that integrate directly into the electronic medical record are two good approaches. “But caregivers also must have an awareness and understanding of how to utilize these resources. That is why educating caregivers about advance care planning is crucial to avoid these ethical dilemmas from occurring,” underscores Potter.

In 2017, UNC Health recognized the need for a more consistent approach to ensuring that patients’ wishes were discussed, documented, and honored across a large health system. “Early assessment showed significant variation in advance care planning practices across hospitals and outpatient sites,” says Katherine Aragon, MD, an assistant professor in internal medicine at UNC School of Medicine.

This prompted the creation of an Advance Care Planning Task Force to standardize processes, improve accessibility of documentation, and support clinicians systemwide. “Implementing a unified advance care planning initiative in a large health system is complex, but our experience shows that alignment is achievable,” says Aragon. For large initiatives such as advance care planning, identifying key stakeholders and securing their support is essential. “Broad representation — from different clinical sites and disciplines — helps ensure that processes reflect the realities of varied care environments. We prioritized systemwide education for physicians, advanced practice providers, nurses, social workers, chaplains, and clinic staff,” says Aragon.

Ethicists can promote clear documentation practices and ensure there is a designated, easy-to-find location for advance care planning materials in the medical record. This allows others to follow up, reduces uncertainty, and supports continuity across settings. “Good documentation is especially valuable when patients can no longer express their wishes,” notes Aragon.

Family members and caregivers may disagree about what the patient would have wanted. “Surrogates often have not had detailed conversations with the patient and may feel uncertain, or guilty, when making decisions about limiting life-prolonging treatments,” says Aragon.

Even when advance directives exist, they may be vague or not fully applicable to the clinical situation. “Strengthening advance care planning conversations upstream and ensuring that plans are easily accessible in the record can help reduce conflicts and provide clearer guidance during ethically complex situations,” says Aragon.

Stacey Kusterbeck is an award-winning contributing author for Relias. She has more than 20 years of medical journalism experience and greatly enjoys keeping on top of constant changes in the healthcare field.

References

1. Fisher MC, Perrin N, Crews DC, et al. Factors that facilitate informal advance care planning conversations with family: A cross-sectional survey of Black adults with kidney failure. Am J Hosp Palliat Care. 2025;42(10):1031-1039.

2. Ma JE, Kilpatrick KW, Davenport CA, et al. Impact of prognostic notifications on inpatient advance care planning: A cluster randomized trial. J Pain Symptom Manage. 2025;70(6):602-612.