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Somewhere right now, a person with a serious illness is spending the last couple of years of their life doing what they think they are supposed to do. Their physician told them the next step, or never discussed what would happen if they chose something else, so they followed the plan by default. They didn't know they had options. They may end up with a less comfortable, less pleasant few years than they would have chosen for themselves, if anyone had helped them choose.

Palliative care folks have a phrase for what gets lost here: “what matters to you” is much more important than “what's the matter with you.” We reach a point in a life-limiting illness where the exact treatment regimen matters less than the day-to-day, the actual experience of being alive. You want to optimize how you feel.

Sometimes that means optimizing medical management.

Sometimes it means removing medications whose only benefits are long-term, benefits now outweighed by what the person is suffering with today.

We talk about quality constantly, and we talk about outcomes constantly. When you are a human being living with serious, life-limiting illness, your day-to-day experience is the outcome that matters most.

Serious illness is more than chronic care, complex care, or multimorbidity. It's the presence of a life-limiting condition or set of conditions, often in their later stages, in people who are not necessarily hospice eligible (defined as “6 months or less left to live.”) They have a limit to their life because of their serious condition(s), and it will probably arrive in the next few years.

One description I keep coming back to: is this: palliative care should ideally start when a patients condition(s) become complex and serious. That's when it's supposed to start. It's a way of helping a patient and their family manage everything in a coordinated way, and part of why we need it is that the traditional family doc who used to hold all of that is mostly gone.

I want to be precise about who I mean, because of course, people die suddenly in adulthood from strokes and heart attacks, from things nobody could predict, and that is a different story (which is why having a health care proxy knows no age or the presence of any medical conditions). For many others, the last couple of years are a compounding of illnesses, some of which have become serious and life-limiting. Those are the patients I am talking about, and those are the patients where we can do so much.

We have spent decades in a payment system with no financial incentive to manage end-stage serious illness the way that is best for patients. It doesn't pay. The billing codes aren't there. The time isn’t there. The more you treat, the more you make, and that is the absolute worst arrangement you could design for people with serious and life-limiting conditions.

It shows up in the conversations that don't happen. When an oncologist says the next step is more chemo and radiation, they rarely say: here's what you can expect from this regimen, here's the best case, here's the worst case, and here are the other options and their potential outcomes you can consider so you can help make this decision with my help and support, as your partner in your care journey. That kind of partnership is rare. We are not in a system that makes room for these intimate conversations, and the capability of palliative care and skilled advanced care planning goes both underused and unrecognized.

So why do policymakers care about this now? It's not that they haven't cared. They have watched for fifteen years or so that one of the biggest areas of Medicare spending is not even what patients want, because patients never knew their options. The last six, twelve, eighteen, twenty-four months of life, if people had understood the downstream impact on their health and on how they feel physically of the decisions they were making by default, they often would have chosen differently and prioritized other things.

Palliative care and advanced care planning are coming back into focus across Medicare's proposed rules this year. The through-line is money finally lining up behind the right thing.

Start with the codes. CMS launched the advanced care planning codes, 99497 and 99498 10.5 years ago, on January 1, 2016. They are time-based and they can only be billed when a physician or advanced practice provider does direct, face-to-face care planning with the patient and family. Those conversations sometimes yield the creation of a physician/practitioner or medical order for life-sustaining treatment (POLST or MOLST, depending on the state). That order is intended to be accepted in every setting across the care continuum, including in the home.

Do I want a feeding tube?

Do I want CPR if my heart stops?

Do I want to go to the hospital?

Do I want to be intubated?

Those answers are directive, and they can be revisited as often as the patient wants. Interoperability of data is crucial here, because then a hospitalist seeing that patient later can pull up the form, honor it, or open the conversation again as conditions may have deteriorated further. Did I mention lately how important accelerating interoperability is? 😁

Here’s a snip of page 2 of 3 of the National POLST Form, which you can find here. 👇

The early pushback when these codes came out was that this is the “social worker's job” or the “nurse's job.” Meanwhile, you are asking the patient to have this discussion with the person who diagnosis and prescribes their care, the one who can actually walk them through courses of treatment and what they do and don't want. Those decisions are made with a medical provider, which is exactly why the billing codes belong to physicians and advance practice providers.

Now watch what the 2027 Physician Fee Schedule proposed rule does. It creates two new codes, GACP1 and GACP2, for clinical staff to furnish parts of advanced care planning under a physician's direct supervision. Not to write orders, and not to the same depth, but to have the conversations. I read this as a recognition that nurses, social workers, and other team members are often more comfortable starting these discussions, and that they can coordinate care, catch symptoms that aren't being managed, and take the time busy providers don't. They get the conversation going, in the wheelhouse of what they are licensed to do and within their scope of practice, then hand off to the physician or APP for the more medical decisions.

That's not the only signal. In the same proposed rule, CMS wants advanced care planning codes to count toward beneficiary assignment in the Medicare Shared Savings Program, and it opened a request for information (RFI)on a community-based palliative care benefit outside the hospice framework, coordinated with parallel RFIs in the Home Health, Hospice and ESRD proposed rules.

On the hospital side, the FY 2027 IPPS proposed rule adds an Advance Care Planning quality measure: the share of discharged patients who have an advance planning document in the record, or documentation that an ACP conversation happened. Everyone caring for a seriously ill patient should carry responsibility for these conversations. Now, CMS is proposing to measure whether they occur. Call it a nudge or an incentive, but the goal is to make it a standardized practice in all hospitals.

Read together, it seems obvious that CMS is building palliative care scaffolding across primary care, the hospital, and the post-acute world at the same time. They are recognizing the value of better care for patients with serious illness, and they are putting the policy incentives in place to drive that.

Every time payment lines up behind these conversations, someone calls it a “death panel. “

It is the opposite.

Caring well for someone with a serious, life-limiting illness means we stop hiding behind the idea that these are hard things to talk about and that they are time-intensive to do well. They are hard. We practice anyway, and we get comfortable, because the alternative is letting people default into a version of their last years they may not have actively opted into if they understood both the options and the potential outcomes of those options.

People call palliative care “hospice-light,” or a “bridge to hospice,” and that is both minimizing and has the potential to create fear and misunderstanding. Palliative care belongs in the long stretch of serious illness when treatment still prolongs life, when someone is clearly life-limited and also not hospice eligible.

When I worked in a health system, we had an extraordinary palliative care medical director and team of palliative care NPs, and when we presented about palliative care across the care continuum we called what we were asking them to do was “primary palliative care.” Palliative care providers are scarce and not necessary much of the time. Care planning, advance directives, serious-illness conversations: much of it can and should happen at the primary care level and then be picked up again to revisit by hospitalists (and likely care teams, assuming the new incident-to codes are finalized as proposed) when patients are admitted to a hospital.

This is another important thing to pay attention to: More specialty care is moving into primary care. It’s happening in advanced primary care now and will continue to accelerate as tools like e-consults and clinical decision support tools make it easier for primary care teams to provide what I call “primary specialty care.” Palliative care is an ideal specialty for “primary specialty care.”

Prioritizing comfort earns more buy-in from patients and families, and what’s under-appreciated is that those patients often live at least as long, sometimes longer. The landmark trial in metastatic non-small-cell lung cancer put early palliative care alongside standard oncology care and found better quality of life, less depression, less aggressive care at the end, and a median survival of 11.6 months versus 8.9. That survival difference rivals what we would expect from chemotherapy. When “what matters most” to a patient is comfort, for themselves and the people they want to spend their time with, giving them that often gives them more time too.

The seriously ill patients we fail to plan with well end up in a predictable cascade. A condition exacerbates, and without easy access to their care team to catch it early and stabilize them, they land in the hospital in a crisis. Those hospitalizations often lead to skilled nursing stays. Every transition of care is a risk. All inpatient care is usually far more bed rest than anyone would want, and it feeds a cycle of weakness, lost independence, lost strength and function, and another admission, with each loss of mobility driving more decompensation. Those last couple of years can go many different ways, and the good news is a great many of the bad turns are avoidable.

Consider a feeding tube for someone with dementia. I will put a stake in the ground: we do not spend nearly enough time helping patients and families understand the pluses and minuses of that decision of feeding tube or not. The evidence in advanced dementia is that tube feeding does not extend life or prevent aspiration (so it shouldn’t be opted into unless the healthcare proxy understands this), and it carries real burdens, including higher rates of hospitalization and sometimes the use of restraints when patients try to pull the tube out.

The incentives don't help. Enteral feeding is a service Medicare treats as skilled by definition, which may qualify a nursing home resident for the Part A benefit of up to 100 skilled days. (However, I have made the argument successfully on multiple occasions that once the ostomy wound is healed, the feeding is stable, and the CNAs have been taught to feed the patient successfully, the “skill” is over and the patient is no longer “skillable” under Medicare Part A. But that’s a story for another day.)

When a tube can “qualify” a patient for a longer Medicare skilled stay, the financial pull runs toward placement, not toward a long, honest conversation about whether it serves the person. I don't read this as villainy. It is what our payment system rewards.

If you are a clinician moving into industry, technology, or advisory work, this is the population I would consider planting my flag in. Primary care and value-based care have only so many levers, and a lot of the obvious ones are already being pulled. Managing serious, life-limiting illness for people who are not yet hospice eligible is where enormous value still sits, in quality of life and in spending both.

Don’t confuse care for the seriously ill with caring for patients with multiple chronic conditions. They are not synonymous. If you are familiar with the High Needs ACO REACH population, many of those patients can be considered “seriously ill.”

The financial upside to better serious illness management is real in an accountable care relationship, because that is where you see the downstream effect of fewer crisis admissions and fewer risky transitions of care. The deeper reason to build expertise here is that it is genuinely the best thing we do for patients and families. We say “patient-centered care” constantly. Nowhere is it more true than in helping someone navigate the decisions that shape the last stage of their life, with the people they love around them. That should matter to us intrinsically, as clinicians and as health systems, not only because it shows up in a total cost of care report.

This work is not sexy. It requires communication and connection, and it means practicing, getting better at it, and being comfortable talking about it. The human part of this work is not automatable. You can send someone a form and a video, and I am as bullish on technology as anyone, but there are limits. A trusted relationship is needed to provide this care well over the course of serious illness.

So here’s what I ask you to consider: Can you make the seriously ill a priority in whatever seat you hold, and make it something you are proud to have expertise in? The policy scaffolding is going up right now. The clinicians and leaders who understand this population, who can build the workflows, the handoffs, and the measures around it, will have a head start. There's no excuse anymore. We're done with those excuses.

Read my related prior articles on the topic! 👇

The proposed rule doing most of the work here, with the new advanced care planning G-codes, the community-based palliative care RFI, and the move to count ACP toward ACO assignment. Centers for Medicare & Medicaid Services, "Calendar Year (CY) 2027 Medicare Physician Fee Schedule Proposed Rule" (fact sheet), July 2026. cms.gov

Exactly who can bill the ACP codes: physicians (MD/DO), nurse practitioners, physician assistants, and clinical nurse specialists, and no one else independently. This billing-and-coding article confirms that only these practitioners may report 99497 and 99498; social workers, psychologists, and chaplains cannot bill them on their own. It also lays out the time thresholds (99497 for the first 30 minutes, 99498 for each additional 30) and the settings where the conversation counts, including the office, hospital, skilled nursing facility, and home, with no cap on how often it is revisited when the patient's status or wishes change. Centers for Medicare & Medicaid Services, "Billing and Coding: Advance Care Planning (A58664)," Palmetto GBA. cms.gov

The hospital-side signal: the proposed Advance Care Planning quality measure that would track whether discharged patients have a documented plan or conversation. Centers for Medicare & Medicaid Services, "FY 2027 Hospital Inpatient Prospective Payment System (IPPS) and LTCH PPS Proposed Rule" (fact sheet), April 2026. cms.gov

A 2025 primary-care-authored case for e-consults, written from the referring provider's seat: it lays out the benefits, a primary-care-centered path to implementation, and argues e-consults will become a future necessity for primary care as demand and adoption grow. Baltaro E, Henderson W, Batch BC, Fox L. "Electronic consultation: A vision for primary care management." Journal of Telemedicine and Telecare, 2025;31(2):297-300. pubmed.ncbi.nlm.nih.gov

The evidence that early palliative care improved quality of life and extended survival, the study to cite when someone assumes comfort means giving up. Temel JS, et al. "Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer." N Engl J Med 2010;363:733-742. nejm.org

The classic analysis of how payment, not patient benefit, drives feeding tube placement in advanced dementia. Mitchell SL, et al. "Financial Incentives for Placing Feeding Tubes in Nursing Home Residents with Advanced Dementia." J Am Geriatr Soc 2003. Wiley Online Library

Why enteral feeding functions as a billing lever: Medicare treats it as skilled by definition, which can open the Part A SNF benefit. Center for Medicare Advocacy, "Medicare Coverage of Skilled Care: Nine Services that are Skilled by Definition." medicareadvocacy.org

*Disclaimer: All opinions and ideas expressed in this article are solely mine and none represent a recommendation or should be viewed as advisement of any kind to anyone to do anything.*