By Stacey Kusterbeck
If patients leave the hospital having done advance care planning, many assume future clinicians will know about it regardless of when or where they seek care. However, this does not always happen. Here are some reasons:
• Providers may not be able to access the advance care planning documentation.
If the patient has never been to that particular hospital before, the providers might have access to outside electronic health records that house the patient’s advance care planning documentation. “But they might not,” says Joanna Smolenski, PhD, an assistant professor at Baylor College of Medicine’s Center for Medical Ethics and Health Policy.
Electronic medical records (EMRs) can be overwhelming with the sheer volume of information they contain. “It should not be surprising that documentation about a patient’s preferences for end-of-life care, if captured in a routine progress note, will quickly get buried by subsequent notes,” says Stuart G. Finder, PhD, director of the Center for Healthcare Ethics at Cedars-Sinai in Los Angeles.
Ideally, medical record systems have a separate “advance care planning” tab allowing clinicians to quickly find and access this important information. Similarly, some systems have specific alerts or pop-ups such that patients with advance directives, provider orders for life-sustaining treatment (POLST), and other advance care planning documents (including verbal preferences that have been entered via a chart note) can be found quickly. Yet, some external EMRs are organized in such a way as to make finding advance care planning documentation difficult.
“Not all of these systems are structured or categorized the same way. Where advance care planning docs are stored can be quite variable,” says Smolenski.
• There may not be any indication in the chart that the patient has completed advance care planning documentation.
Providers might not think to look for it, especially under time constraints. It can take time to identify a patient, connect the person in the bed with a medical record number, and review the chart for advance care planning documentation. It is especially difficult if the patient is unconscious or unable to provide information as the result of trauma or illness.
“In an emergency, providers do not have this time, and will err on the side of providing life-saving treatment — unless there is extremely clear and readily available information indicating the patient would not want her life saved,” explains Smolenski.
• Patients sometimes give treatment directions that are inconsistent with other instructions.
For example, a POLST form might indicate that the patient wants to be full code. Yet the form also states that the patient only wants to receive selective treatment and not artificial nutrition and hydration — seemingly a contradiction with the patient’s other stated wishes. “This can create confusion among practitioners about what exactly the goal of care is. Is it aggressive, or more comfort-focused?” asks Smolenski.
• There sometimes is a lack of clarity on what the patient wants in terms of treatment.
The patient thinks their wishes are clearly expressed in an advance directive. Providers may see it differently. “Value statements may need substantial interpretation in order to translate into medical decisions. Advance directives are often not sufficiently contextualized so that this interpretation is readily doable,” explains Smolenski.
Smolenski suggests patients take their completed advance directive to a physician who has never reviewed it and ask the physician to interpret the instructions. “If the physician finds it confusing or vague, it’s likely someone else will, too. That ambiguity will likely result in issues — and an ethics consultation — down the line,” predicts Smolenski.
• Although surrogates are ethically obligated to effectuate the wishes expressed by patients in their advance directives, some fail to do so.
In such cases, ethicists should inform surrogates about their responsibilities to the patient and guide the surrogate on the appropriate decision-making standards to use. “However, especially when the surrogate has been appointed the medical power of attorney, overriding their demand for treatment can be institutionally challenging,” notes Smolenski. It may not be possible without a court order.
To avoid this difficult situation, Smolenski advises clinicians to inform patients of the importance of surrogate selection. “Surrogates can end up having relatively broad discretion to override previously expressed wishes,” says Smolenski. If the treatment preferences expressed in a patient’s advance care planning documents are very important, it should be a top priority for the patient to select a medical power of attorney and an alternative. Those individuals should understand the patient’s preferences and agree to implement them even if it is personally challenging.
• The patient’s stated wishes do not always apply to the particular clinical situation at hand.
“Not all statements about treatment preferences are equal,” says Finder. It may be unclear if the patient’s current medical situation meets the criteria for withholding life-sustaining interventions. “A patient may have stated that they ‘don’t want to end up being a vegetable,’” Finder offers. “But what, for this particular individual, does ‘being a vegetable’ mean? What, actually, is their minimally acceptable outcome?” Even being permanently dependent on medical technologies still may be OK for that patient, as long as the patient can do a specific activity. It is that kind of detail that needs to be included in advance care planning documents. “When there is ambiguity, treatment that the patient would not accept may be provided. Or worse, treatment the patient would accept may be withheld,” warns Finder.
To avoid uncertainty that can result in unwanted interventions, clinicians can talk to patients about clinical situations that can occur and the implications of each. “Patients need to recognize that clinical medicine is full of uncertainties and ambiguities. Simple statements made in the abstract may or may not match actual clinical realities that subsequently unfold,” says Finder.
Commonly, patients state, “I want everything done.” “We don’t take this to mean that doing any possible medical intervention is acceptable. It’s about providing interventions that will potentially positively address pathology and are in alignment with the patient’s goals, values, and preferences,” says Finder. Similarly, if a patient says, “I never want to be intubated,” clinicians need to clarify if that means the individual would not even want intubation just for the sake of going to the operating room cardiac catheterization lab or if the medical assessment is that intubation is only needed short-term for an acute respiratory issue.
“As clinicians, we all know that clinical circumstances are fluid,” says Finder. “Relying on ‘all or nothing’ statements, whether to provide or to withhold medical intervention, can quickly run afoul of a changing clinical picture.”
