Despite the uncertainties brought on by the COVID-19 pandemic, advance care planning remains critical. With death tolls and confirmed cases rising, advance care planning is increasingly vital, particularly for high-risk patient populations receiving hospice and palliative care.
Severe illness and possible death are among the risks posed by the novel coronavirus, according to the U.S. Centers for Disease Control and Prevention (CDC). As of today, the CDC reported more than 186,000 confirmed cases and more than 3,600 deaths nationwide.
“The COVID-19 crisis has made advance care planning even more acute,” said Ryan Van Wert, M.D., co-founder and CEO of Vynca, a nationwide advance care planning network. “A lot of the focus right now is appropriately on things like increasing [intensive care unit (ICU)] capacity, increasing overall hospital capacity, increasing ability of diagnostic testing, all these are absolutely important. But we also have to recognize and look at the demographics of where COVID-19 impacts people the most. And unfortunately, it hits people who are more elderly the hardest, and it’s these people who have existing conditions, serious illness and otherwise.”
While planning ahead during a pandemic of this magnitude is challenging, hospice and palliative care providers can help manage the unknowns by having open discussions with patients and families about their existing health issues and end-of-life care wishes before situations become dire emergencies.
According to a 2017 report published by the Kaiser Family Foundation and The Economist, a little over half of people in the United States had end-of-life conversations with loved ones, with less than 20% having these discussions with their providers. Only 27% had formally documented their wishes in advance directives or Physician Orders for Life-Sustaining Treatment (POLST) forms. However, advance care planning conversations are vital in today’s climate as severe cases of the coronavirus disease leading to an uptick of deaths.
“Making decisions about whether to use life-sustaining treatments in a crisis or emergency situation is tough on families and clinicians,” Kate DeBartolo, director of The Conversation Project in Boston and Anna Gosline, executive director of the Massachusetts Coalition for Serious Illness Care, said in an e-mail to Hospice News. “At its core, advance care planning is one way to help ensure that [patients] receive the care that reflects and supports what matters most to them, especially in situations where they cannot speak for themselves or need to speak up for someone else.”
In addition to addressing patient concerns, advanced care planning can also benefit providers on the front lines of the COVID-19 crisis. As health care systems become overwhelmed with staffing shortages, a common challenge is having the time and capacity for critical care discussions and deciding on the best course of treatment to take in a patient’s final days. Those final days are coming at a severity level and overwhelming rate of speed across health care settings, with the highest risks in hospice and palliative care patients.
Studies show that advance care planning can reduce hospitalizations by as much as 26%, reduce health care costs, increase community-based palliative care and hospice utilization, as well as significantly increase the likelihood that care will be delivered in accordance with the patient’s wishes.
“Failure to have advance care planning discussions increases the burden on frontline health care providers,” said Margaret Norris, CEO for Uphold Health, a Chicago-based advance care planning agency. “It exacerbates the impossible task of prioritizing resources and increases the rate of exposure among elderly and immunocompromised communities.”
As the need for advance care planning measures increases, hospices and palliative care providers can ensure continued quality of care by integrating robust plans into their COVID-19 protocols and strategies. End-of-life care dialogues can be worked into patient discussions earlier than they may have been prior to the outbreak.
“It’s important that health care organizations have the systems and processes in place to make sure they are actively having advance care dialogues,” Van Wert told Hospice News. “These dialogues need to be captured in a valid, actionable format accessible to providers so patient wishes can be honored.”
Many coronavirus patients are dying alone, without loved ones nearby for comfort or readily accessible to advocate their end-of-life wishes. Traditionally captured in paper documentation, advance care planning directives are increasingly shifting to digital formats for increased COVID-19 infection prevention control and reduced exposure risk through social distancing. With the expanded telehealth flexibilities recently announced by the U.S. Centers for Medicare & Medicaid Services (CMS), hospice and palliative care providers can remain available and accessible to patients who could benefit from advance care planning.
“For aging and seriously ill patients, these advance care planning discussions need to happen now more than ever,” said Norris. “While historically we have referred patients to in-person service providers, we are now looking to connect them virtually. They cannot take place in a traditional setting, nor should that be the responsibility of referring hospital physicians. Health systems are overwhelmed right now and are unable to take the necessary time for critical care discussions. But we can build digital solutions that support patients and their family caregivers — virtually.”
Organizations nationwide are ramping up digital solutions and information accessibility as updates continue unfolding about COVID-19’s lasting effects, health care organizations are increasingly responding with free education and informational resources to help guide in advance care planning measures during the outbreak, such as the COVID-19 Decision Making Tool from the National Hospice and Palliative Care Organization (NHPCO). The tool features assessment questions for patients to address decisions on courses of treatment, symptom management and life-saving measures.
Another approach to strategizing advance care planning is placing more emphasis on preparedness and proactive planning to alleviate some the fear associated with the coronavirus pandemic.
“When patients, families and clinicians can come together to better understand what the road ahead looks like, and what really matters, some of those tough moments can be avoided,” said DeBartolo and Gosline. “So, it’s really about pre-empting the emergency.”