For years, the concept of end-of-life care planning has been elusive to intensive care unit (ICU) providers. Not a lot of patients have engaged in these types of communications, and it hasn’t been hard to see why: end-of-life care planning is by nature a grim topic and can make a lot of people — including clinicians — feel uncomfortable.
But that’s started to change now that the COVID-19 pandemic has gripped the nation. At this point, over 100,000 people have died from the novel coronavirus, and it’s pushed end-of-life care planning as a key topic of conversation.
“The virus and the pandemic shined an important light on end-of-life care planning and the need for people who don’t have medical problems to still consider what their wishes would be. That’s because this virus can unfortunately strike folks who are healthy,” said Lauren Van Scoy, MD, a pulmonary and critical care physician at Penn State.
The number of patients coming into the ICU with an advance directive or having discussed some kind of end-of-life wishes with their family members of providers was scant prior to the pandemic. Patients and providers alike have long been uncomfortable with these types of conversations, largely because talking about death can be difficult and scary.
Per 2016 data, many hospitals don’t have much of a protocol for engaging patients in advance care planning or recording end-of-life wishes. Meanwhile, just under half of providers are uncomfortable with addressing the topic with their patients because they are unsure of what to say, the survey out of the John A. Hartford Foundation, the California Health Care Foundation, and Cambria Health Foundation revealed.
Several providers said that they struggle with identifying the proper time to broach care planning with their patients. Forty-eight percent of providers didn’t want their patients to think that they were giving up on them, and 46 percent didn’t want their patients to give up hope.
But this lack of advance care planning between patient and provider or patient and family member can have negative consequences down the line. For the patient, it decreases the likelihood she will receive hospice care at the end of her life and increases the odds she will receive intensive therapies, which can be both costly and unwelcomed by the patient.
And for the family, limited understanding of a loved one’s end-of-life care wishes can lead to serious distress.
“Care planning is so important because not only does it help the patient to receive care that’s consistent with their wishes, but it also helps the family members to have a lower-stress experience,” Van Scoy explained. “They have less psychological morbidities afterwards, and less stress related disorder.”
The data show that up to 30 percent of families who have to make end-of-life decisions experience post-traumatic stress disorder symptoms, Van Scoy pointed out, referencing a seminal study published in American Journal of Respiratory and Critical Care Medicine.
“That’s one of the things that advanced care planning can help to reduce the likelihood of, the stress related symptoms, so that’s why it’s really important for both the patient and the family,” she added.
Of course, advance care planning hasn’t totally been unheard of. In 2015, CMS said it would start paying Medicare providers for holding advance care planning talks with patients, with the goal of improving the quality and experience of end-of-life care and potentially decreasing the use of costly and intensive therapies. Increasing reimbursement for these activities potentially served as an incentive to increase engagement.
And older adults, knowing they may be nearing the end of their lives, have also been at least somewhat receptive to these conversations.
“As people get older, they’re more likely to do advanced care planning,” Van Scoy said, suggesting that this is not enough.
“As we know, medical catastrophe can happen for anyone of any age. We’re often faced with patients, particularly in the ICU, who have not had conversations about what their goals are, what their wishes are, what their preferences are. Families are often quite distressed when having to make decisions.”
But again, that trend has started to change, as more Americans face the reality that they could contract the novel coronavirus. And although COVID-19 has a pronounced impact on individuals with comorbidities, the fact of the matter is anyone could succumb to it.
“The virus has given us an opportunity to have that teachable moment to show that, whether you were diagnosed with coronavirus, or have cancer or a car accident, or some other sort of acute and unexpected illness, it’s always good to have good care planning done in advance,” Van Scoy stated.
“The coronavirus pandemic has allowed people to think about it in a new context as opposed to, ‘advanced care planning is just for old and sick people, not for me,’” she continued. “Now we’re having a conversation nationally about ventilators and ICU use and people needing emergency critical care. People are thinking, ‘gosh, I very well could end up on a ventilator.’ The coronavirus has changed the conversation to be more relevant, more pertinent, and brought it to a broader scope of Americans, not just elderly or those with illness.”
And while patients and providers alike are facing a renewed appreciation for advance care planning, Van Scoy has uncovered new strategies to make these conversations more palatable. After all, just because more patients recognize the need for advance care planning doesn’t make these conversations any less uncomfortable.
As part of her research on patient experience and communications in the ICU, Van Scoy has developed a game that brings advance care planning into the community in an agreeable way. The game, titled Hello, can be delivered in both the healthcare facility or in a community-based setting as it pushes patients to consider what is important to them at the end of their lives.
“The Hello tool is a game that allows patients and their families and friends to come together and talk in a way that’s sort of less serious and less intrusive,” Van Scoy explained. “The game features questions that are asked in a way that are easy to answer. Questions are things like ‘what music would you want to be listening to on your last day of life’ or ‘what are three non-medical facts that your doctors should know about you.’ It approaches this topic in a very soft way, but yet it’s still getting into the meat of the problem.”
And the qualitative data shows this approach has been effective, especially in traditionally marginalized populations for whom end-of-life care planning is even less prevalent. Van Scoy largely credits this to the community-based setting in which she has deployed Hello.
“We leverage those networks to get individuals set up to have these conversations in places outside the healthcare system,” Van Scoy noted. “Users are comfortable and they can lean on each other as opposed to leaning on the healthcare system, which in underserved populations have had some historic problems with trust.”
This new information about carrying out advance care planning will be essential going forward, as the COVID-19 crisis ideally renews patient and provider appreciation for these conversations. As the healthcare industry works to adapt to the novel coronavirus, understanding the best ways to address end-of-life wishes will help providers treat their ailing patients with dignity.