How Health Literacy, Education Influences Patients’ Hospice Experience

By: Jim Parker

Providing education and fostering health literacy among the seriously ill, their families and surrogate decision makers is crucial to ensuring a positive patient experience in hospice care.

This according to Yelena Zatulovsky, vice-president of patient experience for AccentCare, who met with Hospice News at the Home Care 100 Conference in Scottsdale, Arizona.

AccentCare is a portfolio company of the private equity firm Advent International, offering hospice, palliative care, personal care, non-medical services, home health, care management and high-acuity home care. The company operates more than 250 locations in 31 states and the District of Columbia, caring for roughly 200,000 patients and families annually.

Hospice News spoke with Zatulovsky about the biggest barriers that must be overcome when caring for patients and families and how AccentCare is working to address them.

When it comes to the patient experience in hospice care, what do you see are the biggest problems or barriers that need to be addressed?

We have all of these systems in place that probably commenced prior to the Patient’s Bill of Rights being written in the 1970s. But what has moved forward is how we support and do things like informed consent to promote patient autonomy and self determination.

What we haven’t done in parallel is we have not provided the kind of health literacy and health education, and so that expert fallacy happens a lot. Patients are experts in themselves. We are experts in whatever part of the service line that we’re in.

We need to find that bridge, meaning the patient and the family are part of the team. We learn what is important to them, what makes them tick, what are their thresholds, what are their belief systems and build what hospice is in that scenario around that.

Do you see a need to change the benefit to support this?

It doesn’t mean changing the benefit. It’s more around, we become the patient advocate with a patient navigator for their experience and honor their identities through the experience.

I think that partnership is probably what’s missing right now. We believe it’s probably what’s creating some of that burden on patients and their chosen families when they are making decisions, because they don’t necessarily have that partnership to develop that health literacy and education.

I’d like to ask you the same question as it pertains to the family and to the caregiver. What are the biggest challenges that need to be addressed there?

I have a very specific opinion about it. We go and we have these living wills, where you don’t necessarily have advanced directives or plans, right only 34% to 36% [of patients] right now have an advance directive. And what we miss in the conversation with the advanced directive is who gets to make decisions and when.

To me, that’s the greatest burden that we put on the survivors, and potentially the greatest burden we put on ourselves as a business model. Because if they have a poor experience, they’re not coming to us. And they’re probably not even coming to the post-acute care world, because they’re so clouded by their experience as a caregiver caretaker for a loved one.

Not all of our caretakers are formal caregivers. They are people who love that person. They happen to be the person who is the surrogate based on the state regulations of hierarchy and decision making. Even if they are a person who loves that individual and has been in their sphere, someday, inevitably, almost every hospice patient will lose decisional capacity at some point in time. So somebody else is going to make that decision on their behalf.

That decision maker is going to be whomever the state regulates, if the state has created a regulation for it. So we have these breakdowns across our systems. And I think that’s the greatest problem.

We don’t talk about that — that these patients will lose that capacity. We asked the question, “who would you like to make decisions?”. But we don’t talk about what it means to be in that role, both for the patient to make an educated decision and for that surrogate decision maker to make an informed decision about providing that care.

Because the one thing that they can’t do is they can’t pass the ball. If they decide that they can’t do it, they can’t choose who can keep going in the sequence.

What kind of work is AccentCare doing to address these issues and the patient family experience?

Our National Ethics Committee is heavily engaged and involved. So these surrogate decision makers, we are extremely engaged and involved in organizational practices and support to ensure that they understand what that role is, and really kind of building some programming and building some ways for our sites to partner with those individuals.

We’re also building ways for our sites to understand who those individuals are so that they can start that conversation earlier, even if it didn’t happen before they got into our care, so that we can build a little bit more about education.

Several of us, myself included, have been involved in some policy work historically. I was just recently involved in the drafting committee for the Uniform Health Care Decisions Act, which just went into an amendment. That’s a key part of that story.

Most of us are just trying to impact what we have within our sphere of influence, to ensure that those chosen families are a part of the story and a part of that equation, because they are the survivors. They’re also our future clients and consumers.

Simultaneously, we look at where we have some influence and at least can impact policy.

How Health Literacy, Education Influences Patients’ Hospice Experience – Hospice News