Let me ask you a question that matters more than anything else in this post. How did your mother or father or spouse make decisions about end of life? Was it a planned conversation in a quiet room with someone trained to walk through it? Or was it a panic decision in an ICU hallway at three in the morning, made by a family member who had never been asked the question and was now responsible for the answer?
For most American families, it is the hallway. I know because I have been in those hallways for 15 years across medical, cardiovascular, and neuro ICUs. One path leads to a person surrounded by family in a place they chose with their values honored. The other leads to a cascade of interventions that nobody wanted, delivered to a patient who cannot speak, authorized by a family member who is absorbing maybe 20 percent of what the medical team is explaining because they are in crisis. That second path is how most Americans die. And there is a Medicare code that pays to prevent it, sitting on the books since 2016, waiting for someone to build the model around it.
The conversation is funded and the code has been on the books since 2016. The gap is that almost nobody is building the program around it.
The Biggest Lie in Healthcare: We Are Doing Everything We Can
When I started at Geisinger Medical Center as an oncology nurse, my patients came back every four to six weeks for chemotherapy, and I got to know their families. As my career moved into critical care, I saw the same pattern repeated across every unit: patients with chronic illness follow a predictable decline, and yet when they arrive in the ICU, nobody has talked to them or their families about the realities and limitations of intensive care medicine. I would hear providers get frustrated with families who wanted everything done, and I kept asking the same question: has anybody actually had the conversation with them? After 15 years, the answer was consistently no.
The problem is not that families make bad decisions. It is that they are making decisions in the worst possible conditions. They are emotional, absorbing less than 20 percent of highly technical medical information, and their default when they do not understand is to want everything done, often just to buy time to process. That causes resource strain, clinician burnout from the futility of care nobody wanted, and ultimately a death that does not reflect what the patient would have chosen.
The two paths of care. This is not about giving up. It is about giving patients back the right to decide.
🏠 70 percent of Americans say they want to die at home. About 30 percent actually do. That gap exists because nobody had the conversation while there was still time to have it. ICU patients with completed advance care planning cost 24.5 percent less.
What Advance Care Planning Actually Is, and Why It Is Not Just a Form
Most advance directives that exist today were written by attorneys. A generic legal document is not particularly useful to clinicians on the inpatient side when they need to make real-time decisions about a specific patient in a specific situation. Advance care planning is not a form. It is a conversation, and it needs to be led by someone who can speak intelligently about the patient's actual medical condition, the road ahead for their specific disease process, and the options available at each stage.
The way I build these programs, we use a two-visit structure. In the first visit, the nurse meets with the patient and potentially their surrogate to cover what advance care planning is, why it matters, and what quality of life means to this specific person, and to send home thought-provoking resources. Three months later, they come back for the second visit. We discuss their answers, elect their healthcare power of attorney (which may not be the spouse of 55 years, because that person may have difficulty honoring wishes in a crisis), and create an advance directive specific to them as a person, not a checkbox form. These are not static conversations; a person at 60 may feel very differently than at 85. That is why this belongs in healthcare, not a lawyer's office: healthcare sees these patients regularly and can revisit the conversation as their health status changes.
The Financial Model: $100K to $150K Net Revenue Per Nurse
Medicare covers voluntary advance care planning with the patient, family member, caregiver, or surrogate as appropriate, including when the patient cannot participate. CPT 99497 applies to 16–45 minutes; adding one unit of 99498 covers 46–75 minutes. Longer discussions follow the applicable time-unit rules, with separate documentation of ACP time. The Part B deductible and coinsurance are waived when ACP is furnished on the same day by the same provider as a covered Annual Wellness Visit, on the same claim, with modifier 33. See CMS’s ACP fact sheet.
The nurse-led two-visit model: value-based conversations that honor patient wishes and generate real net revenue.
RNs cannot independently bill Medicare for ACP. They may participate under applicable incident-to rules; the eligible billing physician or practitioner must meaningfully contribute and meet supervision, scope-of-practice, and other payment requirements. See Medicare’s ACP billing guidance. In the programs I build, we embed the ACP nurse in a primary care office; scheduling identifies high-risk patients coming in for their annual well visit, the physician introduces the concept and refers the patient down the hall, and that nurse sees six to eight patients per day, Monday through Friday. At that volume, each full-time ACP nurse generates roughly $300,000 to $350,000 in gross revenue annually, with $100,000 to $150,000 net after the nurse's compensation and program overhead. This is not a charity program. It is a revenue-generating clinical service that also happens to be the most important conversation in medicine.
What This Means for Home Health
When Arvind showed me the data from Copper Digital's AI documentation system, one pattern jumped out: the advance directive field on the OASIS assessment repeatedly shows no advance directive for patients in their 80s and 90s. That is the gap in visual form. These are exactly the patients who need this conversation, and nobody is having it.
The billing pathway for ACP in home health is still evolving, and I will not give guidance on the telehealth-modifier specifics that I could not stand behind on the record. But home health nurses are in a unique position to identify patients who need this conversation and initiate the referral. The nurse is in the patient's home, seeing the functional decline firsthand, and building the kind of trust that makes this conversation possible. Even if the billing happens at the PCP's office on the next scheduled visit, the home health nurse can open the door.
And there is the documentation connection. When AI takes the documentation burden off the clinician's plate, the question becomes what you do with the recovered time. One answer is more patient visits. Another, and I would argue the more important one, is this conversation. A home health nurse who is not racing to finish her charting has the space to notice that the patient does not have an advance directive, to ask the question gently, and to start a process that could change how that patient dies.
Why This Is Personal
My mother found out she had stage four cancer one day, out of nowhere. She was seemingly healthy, cooked Easter dinner, and then we went to the hospital and got the results of her scans, and it was everywhere, in every organ system. She got about five and a half weeks between diagnosis and passing. She was a textbook case for quality over quantity. She was a proud woman, a little Italian spark plug who never wanted anybody to have to do anything for her. For four and a half weeks she was still herself, 80 percent of herself, able to move and take care of herself. It was only the last few days that she was on a bed in our living room, surrounded by the sound of my son's concrete feet and all the familiar sounds and smells of home.
That is what I want for people: to be surrounded by their family in a place they are comfortable, where they can still feel like themselves. If 70 percent of people want to die at home and only 30 percent do, we have a lot of work ahead. But the conversation is where it starts, and Medicare is already willing to pay for it.
🎧 Luke appeared on the Inside Home Health podcast with Arvind Sarin. To see how Copper Digital reduces documentation burden so nurses have room for the conversations that matter most, explore AI tools for nurses or more resources.
