How End-of-Life Doulas Help Patients Exercise Autonomy in Their Care

Medical decision-making at the end of life does not always follow a predictable path, and patients’ choices can diverge from the recommendations of their care team, the preferences of their family, or even their own earlier stated wishes. It can be difficult for care providers to understand how to support that autonomy without overriding it in real time, particularly in high-stress moments when a patient may no longer be able to communicate their wishes directly.

In an interview with CancerNetwork®, Kim Stravers, an International End of Life Doula Association (INELDA)–certified end-of-life doula based in Phoenix, Arizona, discussed how she works to reinforce patient autonomy in decisions around pain management and personal care preferences. Stravers described a training example she uses involving a patient in long-term sobriety who may decline opioid medication at the end of life because it conflicts with their identity, illustrating that the doula’s role is not to weigh in on the medical merits of a decision, but to affirm that the choice belongs to the patient. She also detailed how documenting a patient’s specific preferences in advance, such as an aversion to certain scents or sensory triggers, can allow a care team and family to honor those wishes even after the patient can no longer advocate for themselves.

Transcript:

How do you help patients exercise autonomy in their end-of-life medical decision-making?

People have a lot more agency than they give themselves credit for. When it comes to medical decision-making, the right choice for an individual may not match the advice of their provider, the opinions and preferences of their family, or even what they wanted for themselves 15 years ago. An example I like to give when I’m educating other end-of-life doulas is pain medication for people who are sober. A person who’s been sober for 25 years may not want to take an opioid medication at end of life because it violates a piece of their identity. Reinforcing for them that it’s not my opinion about whether they should or shouldn’t take any kind of medication, but that they have the choice for themselves, is a piece that doulas hold very well. We hold someone’s autonomy in their identity: their values and their traditions, whether those are traditions of their heritage, their community, their faith, their family, or their individual preferences. That will color how they hold themselves in the dying process and how they help other people to continue to honor that all the way through.

The end of life is a high-emotion, high-intensity experience for many people, and when we’re in a high-stress environment, an environment of overwhelm and exhaustion for everybody involved, it can be very helpful to have documented what someone has clearly identified when they’re in a decisional space, so we can give [people] a resource. Say Tim has said that he really does not want lavender essential oil anywhere in the room when he’s dying because he finds it irritating. When he loses the ability to speak, and a well-meaning relative comes in with an essential oil diffuser with lavender in it, it can be known to that person that Tim does not prefer this to be in the room. I just want to let you know that, so you can make a decision that honors Tim’s wishes.