National Healthcare Decisions Day Promotes Year-Round Conversations

      “It’s a good day to plan projects and activities around advance care planning and end-of-life conversations, which can be awkward and stressful,” said Charles Crecelius, MD, PhD, CMD, medical director of Delmar Gardens in St. Louis, MO, about National Healthcare Decisions Day (NHDD), set for April 16. “Having a special day for this can take the stigma out of these discussions and enable open, honest, and ultimately productive discourse,” he added.
      NHDD, an initiative launched by Nathan Kottkamp, MA, JD, and also promoted by The Conversation Project, is designed to inspire, educate, and empower the public and providers about the importance of advance care planning. It also aims to encourage patients to express their wishes regarding health care and ensure that those wishes are respected as they move through the care continuum.
      Mr. Kottkamp, the NHDD chair, said, “Just getting the conversation started is difficult. One theme we address is, ‘It always seems too early until it’s too late.’ There’s always some excuse not to talk; it never seems like the right time.” He added, “Setting aside a special day for this is liberating for many people and gives them a comfortable, healthy way to start talking.” NHDD activities make having these discussions and completing documents such as living wills and Physician Orders for Life-Sustaining Treatment (POLST) or Medical Orders for Life-Sustaining Treatment (MOLST) forms more mainstream.

      A Slow Evolution

      Dr. Crecelius and colleagues in AMDA — The Society for Post-Acute and Long-Term Care Medicine have long pushed for having advance care planning front and center, and the public and other care sectors are gradually catching up. He said, “It’s been a slow evolution, and we’re not quite there yet. Some people still get anxious and uncomfortable when the practitioner brings up palliative care and end of life; and some practitioners still are hesitant to have these discussions.”
      To ease people’s concerns, said Dr. Crecelius, “It helps to explain the value of having these conversations before there is a crisis or emergency.” Mr. Kottkamp agreed, noting, “You can explain that just talking about the possible trajectory and path of an illness doesn’t make it happen; but if and when it does, the fact that you talked about it helps prevent patients and families from being blindsided.” He added, “We do people a disservice if we don’t prepare them in a way that enables them to enjoy their last days to the fullest extent possible.” Too often, Mr. Kottkamp noted, people who have lost loved ones weren’t prepared and didn’t get a chance to say goodbye. When people are “blinded by hope,” they don’t let themselves prepare for the end of life in a healthy way. Having compassionate, detailed conversations throughout the person’s illness — and not just at the end or at the beginning — can help prevent this.
      In general, most people understand the value of planning; but there still are misconceptions. For instance, Dr. Crecelius suggested, “Patients and families often think that DNH [Do Not Hospitalize] or DNR [Do Not Resuscitate] means doing nothing. In fact, there is much we can — and will — do to keep someone comfortable.” At the same time, he said, “Doing something doesn’t mean doing everything possible. It means doing what is appropriate and feasible. We need to assess people’s level of understanding and address their concerns and misconceptions.”
      Palliative care is still sometimes misunderstood as pre-hospice, said Dr. Crecelius. He suggested, “We need to promote palliation as a routine goal of care, and we need to ensure that patients and families understand what palliative care is and how it will be provided. They need to understand that palliative care is an adjunct to and not a replacement for illness management.”

      A Code to Care

      In recent years, the Centers for Medicare & Medicaid Services (CMS) has come to appreciate the positive impact of advance care planning on patient satisfaction/quality of life and costs at the end of life. As a result, with the support of the Society and other organizations, in 2016 CMS implemented reimbursement for these advance care planning codes:
      • 99497: First 30 minutes (minimum of 16 minutes)
      • 99498: Add-on for additional 30 minutes
      Physicians, clinical nurse specialists, nurse practitioners, and physician assistants may provide and bill for these services. However, nonphysician practitioners must be legally authorized and qualify to provide advance care planning in the states where they are having these conversations.
      “These codes make it easier to have these conversations, especially the time-based code you can add to existing visits,” said Randy Huss, MD, CMD, a Missouri-based geriatrician and medical director. “You can incorporate this into routine care management and talk about advance care planning, goals of care, disease trajectory, etc. As long as you can document that you spent 16 minutes or more of the visits on these conversations, you can use this code,” he said.
      Dr. Huss observed, “There is good data out there that quality of life is improved when we address advance care planning and end-of-life issues. Often patients in hospice live longer than those with similar issues not in hospice.” He added, “I’m part of an ACO [accountable care organization], and we are making it a priority to have these conversations. It both decreases costs and supports a better quality of life for patients.” This isn’t surprising, Dr. Huss said, as having the luxury of time for these conversations enables patients and families to weigh risks and benefits. “We can talk about what is important to them,” he said. Very often, patients would prefer to spend quality time with family, maybe take one last trip or enjoy one last visit with the grandkids, over spending their last days in the hospital “trying to squeeze in every possible treatment.”
      Communication comes before documentation, Dr. Huss stressed. “I put a lot less emphasis on filling out forms and documents. Conversation and understanding are more important. And I’m not hesitant to contact hospitalists or other providers and discuss the patient’s goals with them.”

      Honoring Your Patients on NHDD

      Taking time to plan for NHDD is important because even simple efforts can make a big difference. Dr. Crecelius said, “Promote it to residents, families, and staff in advance. Have various forms and notaries available, and have practitioners on hand to talk and answer questions.” It’s worth stressing that advance directives aren’t just for older patients. Dr. Crecelius noted, “We get many daughters and sons who, as we start these conversations, say, ‘I should document my own wishes.’”
      Dr. Crecelius urged, “Go to your administrator and director of nursing and plan something for NHDD. It’s important, and it’s an important community service.” For maximum impact, get others — hospitals, health systems, physician practice groups, social workers — involved. Talk about ways you can ensure that patients’ wishes travel with them as they move through the care continuum. “NHDD is good chance to regroup, look at what we’re doing, and identify opportunities for improvement,” said Dr. Crecelius. This is important because, ultimately, everyone needs to be on the same page and have access to the same information.

      Beyond One Day

      While NHDD is an important way to focus on these conversations, one day isn’t enough. Mr. Kottkamp noted, “We need to be asking about advance care plans every time you go to the hospital, at every physician’s appointment. If we do this, we take the stigma out of these conversations, and we make sure that there are no black holes.”
      Numerous advance care planning tools are available, and Mr. Kottkamp suggested choosing one to use and employing it consistently. “You need to systemize this so it becomes organizational routine, something we address with every patient every time we interact with them,” he said.
      Mr. Kottkamp has been impressed with the wide array of events and activities surrounding NHDD. For instance, he said, “We’ve seen collaborations between organizations, such as hospitals and nursing homes, with conversations about issues such as the hand-off process.” There have been events at libraries with displays of books on related topics, movie screenings of relevant films, and “lunch and learn” events.
      Medical, nursing, and other schools can use the day to let students role play and experience both sides of the care planning conversation. “This helps them empathize with patients and families who have to make decisions,” said Mr. Kottkamp.
      Whatever you do to commemorate NHDD, it’s worthwhile if “it helps even one person,” Mr. Kottkamp suggested. “You have to be flexible about how you measure the success of your activity, because it can mean a lot of things.” Sometimes, just doing something — getting the word out and starting the dialogue — is a worthy accomplishment.
      Dr. Huss agreed, noting that conversations can make a real and powerful difference. He recalled a patient who came to him with confusion and hallucinations, which he diagnosed as Lewy Body dementia. “We talked, and he was adamant that he didn’t want to spend his last days in the hospital, and he didn’t want aggressive measures. We talked about hospice, and he and his family agreed that this was a good option for him.” The patient entered hospice soon after and passed away peacefully at home a few weeks later. The early conversations prevented surprises and uncertainty in the last weeks and gave the patient and his family peace and comfort.
      Visit the NHDD website ( for more information, resources, and ideas.
      Senior contributing writer Joanne Kaldy is a freelance writer in Harrisburg, PA, and a communications consultant for the Society and other organizations.