Improving Advance Directives with Video
In the famous opening scene of Annie Hall, the film’s main character tells a joke about two elderly women who are lamenting the decline of a restaurant. The first woman says “‘Boy, the food at this place is really terrible.’ The other one says, ‘Yeah, I know. And such small portions.’” If you’ll permit a health ethics joke, a similar lament applies to advance directives: They’re unhelpful and too few people have them.
This is an exaggeration. Many people do have advance directives, which detail an individual’s wishes should they lose decision-making capacity, and most jurisdictions have laws that require substitute decision-makers (SDMs) to make healthcare decisions for the patient in accordance with those wishes, if known. Further, some patients have thorough and clearly documented wishes in an advance directive. So they can be useful.
All too frequently, the problem is that patients have advance directives that the SDM and care team are unable to rely on for clear guidance. One common reason is that the directive is too vague. It might say “I want no heroic measures” or “I don’t want to be hooked up to machines”, leaving the SDM to determine where the boundary of heroism is located and whether, say, an IV for saline constitutes being attached to a machine. Another problem is that the directive will be very specific about some particular disease or outcome the patient is worried about, but it’s difficult to generalize from those details.
Studies have found that physicians and nurses frequently misinterpret advance directives. A 2008 study found that 79 percent of surveyed providers equated the mere existence of a living will that called for the removal of life-sustaining treatment when it “serves only to prolong the process of my dying” with an enacted one. In other words, four-fifths of providers thought a Do-Not-Resuscitate order was justified right away, even though the patient wasn’t end-of-life.
Yet another issue is that SDMs and care teams are sometimes doubtful of the validity of advance directives. This is a common reason for clinical ethics consultations. Since many jurisdictions allow people to execute advance directives with only a witness (i.e., no lawyer, notary, or doctor is necessary), families will sometimes be concerned that a patient was coerced or didn’t have the capacity to sign a new directive. It’s difficult to prove this one way or the other, and only a court can overturn it, so the default is to accept the directive as valid. However, these doubts can influence the confidence of the care team in choosing a plan of care.
The value of an advance directive can be reduced in many ways, and there are efforts to increase the percentage of people who have them and the quality of the documents. In a previous insight article, I described the importance of discussing patient values to promote patient-centred care. Too often, there’s a reliance on paper documentation at the expense of substantial conversations.
But sometimes these conversations don’t take place, and, if they do, there are still problems. The physician involved can document that the patient had capacity at the time of the conversation and then include the patient’s requests, but others might have doubts. I have been involved in multiple cases where a patient has told me or a physician a certain wish, only for the family to deny that the patient expressed it.
One way to address some of these concerns is through video advance directives. In a 2020 article, Thaddeus Mason Pope describes some of the advantages of patients making video recordings of themselves. One benefit is that a video where the patient describes her wishes and how they might apply to various medical interventions will demonstrate her decision-making capacity. Pope cites court rulings that have relied on videos to verify capacity.
Another benefit of video advance directives is that they can dispel concerns about forgeries and coercion. A person giving details about their wishes on camera is likely to genuinely hold those beliefs. Videos can also help clarify wishes. Even the most thoroughly written advance directive can fail to capture factors that the SDM and care team will find relevant. A study that looked at this question found that physicians’ interpretations of wishes improved with videos (or transcripts of them).
Currently, video advance directives are uncommon. However, I’ve been involved in a few cases where they’ve been helpful. In one, a patient who was at risk of losing capacity was worried that his family wouldn’t believe his end-of-life wishes. In addition to documenting his wishes in the chart, ensuring that he executed a paper advance directive, and encouraging him to speak with his family, I also helped him record a video. (Most places don’t recognize videos as legal advance directives, so it’s still important to have a paper version.) When he lost capacity, his family was initially skeptical of the paper advance directive, but they were convinced by the video.
Advance care planning is a process to promote the most foundational bioethics principle: the care patients receive should align with their wishes, values, and beliefs. Videos are one tool to help achieve this goal.
