Advance care planning, done effectively, can reduce aggressive treatments as patients near the end of life, recent research has found.

Researchers from the Regenstrief Institute and Indiana University School of Nursing recently conducted a meta-analysis of studies involving more than 33,000 cancer patients to evaluate the relationship between advance care planning and utilization of aggressive versus comfort-focused care.

They found that patients with these plans in place were less likely to seek aggressive care. However, an effective planning process had to involve more than just filling out forms. It requires careful communication designed to identify what is most important to patients.

While advance care planning is associated with end-of-life care, the process is also a frequent component of palliative care programs, which are oriented around patients’ own goals and wishes at any stage of their illnesses.

Palliative Care News recently spoke with lead researcher Kristin Levoy, a registered nurse and assistant professor in the Indiana University School of Nursing, about the empirical evidence behind advance care planning as well as the right ways to approach these crucial conversations.

From your perspective, what would you say are the most important takeaways of this research?

It’s important to look at what prompted the meta-analysis. There’s been a lot of sort of questioning after about 30 years of work on advanced care planning, since the Patient Self-Determination Act of 1990.

There’s been a lot of effort and policy around advanced care planning and how we best implement it, and so there’s been some recent questions as to what have we really accomplished here. Does it really have an impact?

The impetus behind some of this work was to try to address that question but to do it from a more empirical way through statistical methodology, rather than just doing a narrative review of the literature. So being able to do this type of study really allows us to sort of quantify the effects of advanced care planning across the body of work.

We’re able to say with a stronger conclusion that advanced care planning does work, at least among cancer patients. We are accomplishing something with advanced care planning.

The question is really: Which of its components are also most effective?

When advanced care planning first came out, it was really this transactional process of completing an advance directive, which includes designating a health care surrogate and completing a living will. And this is a very legal aspect, rather than the relational aspect of advanced care planning that is really helpful.

I think in some of the initial research around advanced care planning — because it was treated in this transactional way — we weren’t really seeing a lot of movement or impact. But as advanced care planning has evolved, we’re not going to really be able to move the needle.

Advanced care planning is really a process of communication, and not just filling out paperwork.

When you use phrases to describe care such as “less aggressive” or “more comfort-focused” end of life, does that mean hospice specifically? Is that inclusive of other forms of care?

The aggressive terminology, which I’m not crazy about, comes from the literature. It’s sort of a global category of types of interventions at the end of life. So these are generally seen as treatments that are futile. That usually may not be not prolonging life, just putting off death.

Those were a group of outcomes that we looked at that included mechanical ventilation, hospital admissions within the last 30 days of life, intensive care unit admissions, receiving cardiopulmonary resuscitation, and chemotherapy within the last two weeks of life. They’re likely not conferring any benefit for patients, and they’re seen as aggressive measures.

In the comfort-based category, those were more interventions at the end of life that were geared towards the quality of life rather than being treatment-focused.

So those are things like the receipt of hospice, and also completing a do-not-resuscitate order or looking at other measures of withdrawing life-sustaining treatments.

The hospice indicator is stratified. So if patients are referred to hospice within the last week of life, we just sort of said seven days or less of hospice is also considered aggressive care.

So in that comfort-based category, it was patients that had received hospice for longer than seven days. So the idea is we’re doing these late referrals to hospice, patients and caregivers really aren’t realizing the benefits of hospice.

You noted the importance of communication. What would qualify as effective communication? What are some of the best practices for approaching these conversations?

I don’t know that we’re doing it well in clinical practice. But I think the intent behind this communication is that it should be early in the illness trajectory, and should start at the time of diagnosis and then reoccur across the illness trajectory at important milestones.

It’s a preparatory guide for future end-of-life care, and it is really sort of this mental process of preparation and thinking about the care you might want, and then having the opportunity to document it. But what’s important to recognize is, depending on the course that your illness takes, what you may prefer may change over time.

This is an “early and often” conversation that needs to happen. So now we are looking at how we best time these conversations and design clinical practice in a way that encourages providers to not only treat advanced care planning as a one-and-done process, but that we need to revisit it. 

Who should be having these discussions with the patient and family? What kind of training should they have to do this?

We’re recognizing that we don’t prepare health care professionals to have these conversations in their curriculum, and there’s been a real strong effort in preparing physicians, as well as nurses. There are stronger curricular demands for this type of education and preparation. But I think that, with training, really any health care provider can have these conversations, and it’s within their scope of practice.

You need to have a general skill set around communication. There are a lot of provider-facing tools that create these sorts of algorithms that prompt or walk a provider through the process. And there are some new research efforts around developing these bedside clinical tools to help facilitate these conversations. 

While those may be really good tools [and] starting off points for providers, I think they can have an unintended consequence, that it creates a sort of algorithmic approach to these conversations that are really agnostic to what the patients and caregivers need.