I recently went down to the neighborhood I grew up in on the South Side of Chicago. It’s really not the best area to say the least, but it does boast the best pizza I have ever had — Palermo’s on 63^rd Street. So, I made the drive with my oldest daughter, Katelyn, my partner, Allison, and a group of friends.

While we were enjoying our dinner, the restaurant’s owner came out and talked with us for a while. He showed us various photographs that line the restaurant’s walls and told us stories about them, including some past customers like Barack Obama and the current pope.

Given my work, I love hearing and telling stories, so it was a great night. I love places that have a history.

Speaking of potential stories, let’s dig into some recent developments around palliative care. A series of references in four proposed rules from the U.S. Centers for Medicare and Medicaid Services (CMS) indicate that the agency has palliative care on the brain and may be mulling new pathways to access.

First, CMS in its 2027 home health proposed rule clarified that palliative care is currently available through that benefit for patients who meet its eligibility requirements. I have written about that on Hospice News as well as here on Inside Hospice. I won’t repeat all the details here, but you can check out those stories for more info.

The agency emphasized that palliative care under the home health benefit would be separate from hospice care and could support patients earlier in the course of serious illness. CMS plans to issue further sub-regulatory guidance on palliative care via home health.

CMS is also asking questions about palliative care in other areas. The agency included Requests for Information (RFI) in its 2027 proposed rules for hospice, end-stage renal disease (ESRD) and its physician fee schedule proposal.

This quartet of clarifications and inquiries could signal that CMS is considering greater access and investment in palliative care. That can only be a good thing, even if looking at it within these specific programs comes with some limitations. For example, to receive palliative care via home health, patients must be homebound.

In the proposed hospice rule, CMS looked for input on how to better support and expand palliative care services in community settings for patients with serious illnesses who may not yet be eligible for or ready to elect hospice.

The RFI also explored how to optimize palliative care delivery under existing Medicare structures versus identifying gaps that might require future policy or legislative action.

In the physician fee schedule, CMS is seeking stakeholder feedback on patient eligibility criteria and essential service elements for community-based palliative care, including how to support adequate payment for interdisciplinary services and between-visit care coordination. The agency also had questions about protecting palliative care services from fraud, waste and abuse.

The word “interdisciplinary” is encouraging. Currently, Medicare only reimburses for physician and licensed independent practitioner services when it comes to palliative care. This RFI could indicate that CMS may be open to expanding payment to cover the full range of services that effective palliative care requires, such as nurses, chaplains and social workers.

In the ESRD proposal, CMS posed questions about palliative dialysis. For ESRD, Medicare pays a single bundled amount for dialysis treatments furnished in facilities or at home. This payment is intended to cover all renal dialysis services as defined in the statute.

“Dialysis is life-sustaining but not curative,” CMS indicated in the ESRD RFI. “While it may be furnished consistent with palliative goals of care, current Medicare policy does not distinguish between maintenance dialysis and dialysis furnished in a comfort-focused context. As a result, payment policy does not explicitly account for palliative care objectives within ESRD treatment.”

The RFI also cited low rates of hospice utilization among ESRD patients, in which fears over losing access to dialysis are often a contributing factor.

CMS asked questions related to what patient eligibility should look like, as well as care delivery and settings, payment policy and program integrity safeguards.

The agency presented an extensive list of queries. Here are a handful of examples:

• What objective and auditable criteria should be used to identify beneficiaries who are appropriate for palliative dialysis?

• Should eligibility be limited based on indicators such as serious illness, frailty, functional impairment or limited prognosis?

• What are the primary barriers to delivering palliative dialysis in home- or community-based settings?

• Could access to staff-assisted home dialysis improve the experience for those receiving palliative dialysis?

• What services are necessary to support safe and effective home-based dialysis (for example, equipment setup, cannulation assistance and monitoring)?

• What factors affect the feasibility of integrating hospice and dialysis services, including care planning, payment and provider roles?

• To what extent are palliative renal dialysis services currently encompassed within the ESRD Prospective Payment System bundled payment?

• Are there services or supports that are not adequately reflected in current payment?

• What safeguards are necessary to ensure appropriate targeting and prevent overutilization?

What this actually means for palliative care in the United States remains to be seen. After all, CMS has yet to take any real action here. It clarified existing avenues to palliative care via home health and asked some questions that could inform future policy.

Nevertheless, these developments are significant. They signal that CMS is thinking about ways to ease and expand access to palliative care for patients in need, specifically using an interdisciplinary, community-based model. I, for one, am excited to see what happens next.

How about you? How do you think CMS should handle palliative care policy in the long term?

I recently interviewed Dr. Kurt Merkelz, the chief medical officer of Compassus, for Hospice News. We had a great conversation focused largely on end-of-life planning and patients coming onto hospice too late. However, he also had things to say about Medicare Hospice Benefit reform, with ideas about a new potential payment model.

Not all of that was able to fit into the Hospice News piece, so I wanted to share more of the interview here.

I’d also love to hear from you in the comments. Do you think the hospice benefit needs reform?

Do healthcare providers upstream of hospice typically initiate these kinds of conversations?

That’s highly variable. They do when the pathway is clearly evident, when the prognostication is clear that the patient is actively coming towards the end – that last two weeks of life. And that’s why the median length of stay is around 17 to 18 days.

People aren’t having those conversations because it’s difficult to prognosticate, and there is a worry that if they get it wrong, then there’s going to be penalties, or that they can’t certify them. There’s myriad reasons why. I think the biggest one is a prognostication deficit.

What do you mean by that – a prognostication deficit?

Bodies are complex. Alzheimer’s is the perfect example in which [the U.S. Centers for Medicare and Medicaid Services (CMS)] is struggling. Generally, with the advanced-stage, frail Alzheimer’s patient, there’s usually an enticing event, such as a fall with or without a fracture or some type of injury, urinary tract infection or pneumonia. Now the patient stops talking, stops eating, stops walking, stops attending to care, becomes more resistant, more cognitive decline, whatever it may be, and so that you appropriately refer to hospice.

The problem was that inciting the event that dropped them down may be a new baseline that they work from, or they may continue on that trajectory. Who knows? Once the infection resolves, the injury resolves, the patient may be at a new baseline.

Then we get to six to nine months later. There were no questions that they were appropriate. But now CMS is wanting to say, “This patient should never have been admitted. They say the prognosis was not supported.” Well, it clearly was. The patient stabilized, but they’re no better. They didn’t regain any function. They didn’t restore. They didn’t cure. They’re still advanced stage, but now it has become problematic.

So, no, I don’t think that they’re having these discussions enough for a prognostic reason. And the second is because the system lacks an understanding of what to offer. So that comes back to goal-concordant care. They lack an understanding of how to reduce caregiver burden, how to avoid hospitalization.

There are specific steps that can be done with med management, with safety mitigation, but there’s no standardized approach, and I think that’s what is really lacking. The physician doesn’t refer those patients earlier because they’re not sure what to refer them to.

Do you think that there’s a discomfort in the healthcare community about discussing hospice, death and dying?

Absolutely, and hospice itself has been part of the reason. It sets up a very known, linear path of what’s going to happen to the patient if you stop doing aggressive treatments. So a lot of it comes back to that pathway and that barrier. I think that exists.

The benefit itself, the way it’s currently structured, it hasn’t been modified in such an incredible long period of time. Chronic kidney disease is a wonderful example. There’s an entire subset of patients that have no access to hospice outside of just stopping their hemodialysis. Even patients who are declining, there’s not a good way of allowing these patients to get supportive care and supportive palliative hemodialysis while their condition declines.

There’s also this six-month trajectory, which is based on a cancer diagnosis and doesn’t apply to many of the chronic disease states nowadays. So the payment system where we get patients up front who may need more aggressive care should get a much higher rate in reimbursement, and then we should look at more stagnated reimbursement after three months, at six months, at nine months, maybe at a year, to offset the cost that comes with this type of condition, or these type of chronic conditions.

It’s time for Medicare hospice reform, and that just hasn’t taken place yet. It needs to. So we’re all trying to figure out how to work within the confines of an outdated system. As diseases, medications and treatments have progressed, the structure of the benefit hasn’t.

I turned 50 on Wednesday, so that was weird. This was a milestone, of course. On the one hand, it’s just one more year clicking away, but on the other, a good moment to stop and reflect a little bit.

I feel the age to a minor degree at this point. I am slowing down a little, going gray and my knees hurt sometimes, but I am overall in pretty good health and grateful for that. But other things are changing too, not because of my birthday but coinciding with it.

My relationship with my daughters has evolved as they have grown. They are 26 and 32 right now. And my relationship with my dad has transitioned in a way. I no longer lean on my parents and haven’t for a long while. Now the time has come for him to lean on me. I worry about him a lot, especially with my mom gone. He lives 1,500 miles away, and it would take me some time to get to him in an emergency. He does have a strong group of friends around him, though.

I also think about my grandson Caleb. He calls me “Boppy.” I want to be very involved in his life and guide him and his parents as best I can. I want to take care of myself so I can see him grow up.

I have struggled with depression and PTSD for much of my life, and that led to a lot of dark feelings. But now I can honestly say that I hope I live a long life so I can see the man he will become. If I am lucky, maybe I will be a great-grandfather someday. It’s possible.

As the sand in the hourglass falls, I must acknowledge that I am one step closer to death. This sounds dire but is a reality. And I need to think about what I want that to look like when the time comes. Hopefully, it’s a long way off, but I advocate for people preparing themselves before a crisis comes. So I really should do it myself.

I have thought a lot about this and have some wishes, but to date I haven’t documented anything. I know I should have by now, but I will get on that soon.

I am not alone in this negligence. Only about 36% of U.S. adults have documented their end-of-life wishes, research has shown. This often means that they receive more aggressive care than they would have preferred had they known their options and documented their choices.

This practice can also be a gateway to hospice. Advance care planning is also associated with increased hospice utilization, according to a 2025 study published in the journal JCO Oncology Practice.

Fostering greater adoption of advance care planning can bring more patients under hospices’ wings when they become eligible. Hospice census would likely grow, and more families would receive patient-centered interdisciplinary care at the end of life. This can only be a good thing.

Does your organization work to foster greater access to advance care plans, or work with other providers to do so? How do you do that? Drop a comment.

Notable Quote:

“Any moment might be out last.

Everything is more beautiful because we are doomed.

You will never be lovelier than you are now.

We will never be here again.”

-- Homer, The Illiad

I just returned from a voyage to Iceland and the Faroe Islands, and it was amazing. They are such incredibly beautiful places. I saw mountains, waterfalls, whales, seals, dolphins, puffins, Viking historical sites, glorious works of art and much more. The picture you see above is one I took of a lovely sunset off the coast.

But today what I really want to talk about is my mom. August 9 was the third anniversary of her death at 82. It’s hard to believe that it’s been three years already. It feels like it was yesterday.

I want to write about mom to honor her, but also because I believe her experience is emblematic of what many seniors go through in our health care system, particularly as they near the end of life. Moreover, I think hospices could learn from some of what she went through.

Her final illness began after a routine pacemaker installation procedure. Sadly, the pacemaker she received was contaminated with MRSA. This devastated her health. Just a couple of months prior she had travelled to Vienna, Austria, and had walked its streets and sites for hours. She had been in robust health. But after a bout with this infection, she was confined to a wheelchair, unable to walk, very frail and in tremendous pain.

Efforts to treat the infection were delayed because of a disagreement between two specialist physicians on the right course of action. The disagreement was communicated via physician notes in clinical documentation. When I proposed that the two doctors actually speak to each other to resolve this, they refused to do so. That kind of direct communication was outside of their protocols, you see. Also, they each worked different hours and were never around at the same time.

Eventually the pacemaker was removed, but the device pocket in her chest wasn’t properly sealed, which led to internal bleeding, a surgical site infection and a second procedure.

This was the beginning of eight months of her suffering through repeated hospitalizations, surgeries and skilled nursing facility stays. At one such facility, my father had to call the police because a staff member had thrown an object at my mother while she was lying in her bed.

At no time was her pain controlled. Her constipation got so bad that it caused fissures in her bowel. The family pleaded with the SNF and later, again, the hospital to give her something beyond a stool softener. But that wasn’t their protocol. She also contracted a catheter-associated urinary tract infection (CAUTI). Requests for palliative care were met with apparent incredulity, so she received none.

The number of things that went wrong with her health care are seriously too many to list, but I will mention just a couple more. For one, she had a stroke while waiting for treatment in a hospital emergency department and didn’t undergo any kind of imaging for 28 hours.

Also, days before her death a hospital pulmonologist declared that her lungs were clear and that she was ready for discharge. We took her directly from there to another hospital where she was diagnosed with double pneumonia. Two days later, her heart gave out and she died.

I want to highlight two particular incidents that occurred during this ordeal.

My mom never gave up hope and, though it never happened, she was determined to walk again. This meant she would need to go to a rehab hospital. However, her Medicare Advantage plan denied the prior authorization.

I filed an appeal. As I did so, my thoughts dwelled on all the families going through similar events who might be less knowledgeable about the healthcare system. What happens to them? Do most people know how to file an appeal with an MA plan, for example? Or do they just accept their insurance company’s decisions, believing they have no choice?

When I filed the appeal, I did describe her condition and the ways she was suffering. But the point I tried to drive home the hardest was this: If she didn’t receive rehab care, she would continue to have multiple hospitalizations and ultimately need a nursing home admission. The message I tried to send was that denying the care would cost the MA plan more money in the long run.

And it worked. They reversed the denial.

Of course, I can’t be certain that a different approach would have failed. But the situation reinforced for me a difficult lesson about the U.S. healthcare system. While the toll of a patient’s suffering might be extreme and escalating – and naturally might be what an advocate for that patient is moved to highlight in discussions or negotiations with payers or providers – that is not necessarily the most effective approach.

Hospices should take heed of this because when they go to work with insurers, particularly those outside of traditional Medicare, they will have to send the exact same message. They need to make the case that their services will reduce the patient’s health care spend and save the insurer some dollars. Simply saying that the patient needs help isn’t going to cut it.

Case in point: In an interview I did a little more than 20 years ago, one insurance executive looked me in the face and said, “I don’t care about lives saved. I care about dollars saved.”

That conversation happened a long time ago, so one would hope that attitudes and leadership might have changed. But has it?

Also, you may have noticed that in my recounting of my mom’s healthcare journey, I didn’t use the word “hospice.” She suffered and died without the benefit of hospice.

The subject of hospice came up only once. Her physician listed several options we could pursue, and at the end she said, “There’s always hospice. They provide many great services.” That was it.

So I asked, “Are you saying that she is terminally ill?”

The doctor dodged the question. She just started talking about something else.

I asked again, “Do you think she has a six-month terminal prognosis?”

The doctor again ignored the question.

My third question was, “Are you saying that she won’t benefit from these other treatment options?”

The doctor had to go and get off the call. We were left confused, frightened and completely unsure of what to do next.

I have to ask: How many patients miss out on the person-centered, comfort-focused interdisciplinary care at the end of life because their health care providers don’t know how to have these kinds of conversations?

How many more people could hospices help if upstream providers could talk openly about the prospect of death?

I’d like to hear from you. What points does your hospice emphasize when communicating with payers? How can we foster better communication with families about the end of life?

I asked an AI program whether I should enter hospice, thinking it would give me bad advice so I could complain about it. However, it actually gave me good advice, so I am going to write about something else.

But I will give you a couple of nuggets from the AI’s response:

“[Entering hospice] depends on your medical situation, your goals, and what matters most to you. Hospice isn’t about giving up — it’s a type of care focused on comfort, symptom management, and quality of life when a person’s illness is no longer expected to be cured. Choosing hospice doesn’t mean you stop receiving care. Hospice teams typically include doctors, nurses, social workers, chaplains, aides and volunteers who work together to manage symptoms and support both you and your family.”

The app had a lot more to say, including a list of questions to ask your physician, and some to discuss with your family.

I was a little impressed that it said hospice isn’t “giving up” and specified that doesn’t mean that you stop receiving care.

This was an interesting experiment in a time when patients and families will be using AI more extensively in health care decision making. For instance, I also asked the AI platform for “the best hospice in my zip code,” and it gave me a list of five. More families will be doing this in the future.

I want to talk about one other thing this week, a recently introduced piece of legislation.

U.S. Rep. Debbie Dingell (D-Mich.) recently introduced the Improving Access to Transfusion Care for Hospice Patients Act. If Congress were to approve this, it would direct the Center for Medicaid and Medicaid Innovation (CMMI) to develop a demonstration model to test payments for transfusions separate from the Medicare hospice per diem rate.

Sen. Jacky Rosen (D-Nev.) has introduced a companion bill in the Senate. Rosen also put forth similar legislation in 2023 and again in 2024.

Having access to transfusions was cited as a main priority among 200 adults with advanced blood cancer in a recent study published in the American Medical Journal. Patients with blood cancer may perceive hospice as “incompatible” with their current treatments, including transfusions, researchers indicated in the study.

This could be a boon for patients if it comes to pass. More patients may choose to elect hospice if they are no longer afraid of losing access to transfusions.

Research from the American Society of Hematology indicates that patients with hematologic malignancies have low rates of hospice utilization, and they often enroll during the last three days of life.

Spanning from Oct. 2020 to July 2021, researchers surveyed patients with blood cancers from two large cancer centers about their perceptions of different services routinely offered in hospice settings, as well as others that are less routine such as transfusion access, transportation, peer support and telemedicine.

Among the 102 participants, 78.4% indicated that they did not have more than one transfusion, with patient responses “overwhelmingly” rating blood transfusion access as the most important factor in their hospice decisions, according to researchers.

Transfusions can aid in palliation, but patients often do not receive them due to high costs and questions as to whether they fall within the scope of the Medicare Hospice Benefit. This is also true for other high-acuity services like palliative radiation, chemotherapy and dialysis.

A new payment model for transfusions could improve hospice utilization among patients in need. However, this would be more of a long-term solution than a quick win.

First, Congress would have to enact the bill. Then, CMS would have to design a payment model demo, which would likely last several years. It would then take a year or more to analyze the results of the demonstration. If it passes muster and becomes a permanent benefit, it would also take considerable time to implement.

Nevertheless, this is a step in the right direction.

I am glad to see that this issue is being discussed in the halls of government. This bill is not the first time this issue has come up.

The U.S. Centers for Medicare & Medicaid Services (CMS) in its 2025 proposed hospice rule featured a request for information (RFI) on the utilization of higher-cost palliative treatments under the Medicare Hospice Benefit. The agency posed similar queries in its proposed rule for 2024. The 2025 RFIs sought greater clarity on the financial risks and costs that providers say represent barriers to providing those services.

The Medicare Payment Advisory Commission (MedPAC) also took up this question in 2025 at a meeting late in the year.

After so much discussion, it would be great to see some action on this.

I do question why the bill focuses on transfusions alone, rather than the larger spectrum of high-acuity palliative services. Perhaps that spectrum is too broad for a single payment model demonstration, but to me it feels like we should be able to kill four birds with one stone and create a system that would also ensure access to radiation, chemotherapy and dialysis, when appropriate.

Furthermore, this relates to the government’s increased scrutiny on payments for non-hospice services rendered to hospice patients, which I wrote about last week. The complications around transfusions, radiation, chemotherapy and dialysis show that the issue of patient needs while in hospice is nuanced, and it is in the interest of patients, providers and payers to establish appropriate payment pathways – whether within a hospice provider’s per-diem responsibility or a separate Medicare payment model – for services that are crucial for some conditions. Otherwise, people will continue to forgo hospice or receive hospice for only a brief period, undercutting the ability of hospice providers to both enhance the patient experience in the last stages of life and to save the healthcare system money and resources.

What do you think? How should Medicare handle high-acuity palliative services like transfusions?

When I make buying decisions, I try to lean into the most expensive, inconvenient and complex options while spending as little as possible on better value products and services.

Oh wait, sorry. That wasn’t me; that was the government.

That opening was a little tongue-in-cheek. To be fair, the U.S. Centers for Medicare & Medicaid Services (CMS) isn’t necessarily allocating larger Medicare increases to hospitals, for example. However, I think the agency’s approach to setting payment rates isn’t serving the stated goal of bringing down overall expenditures. Paying providers in lower-cost settings more, to support growth and investment, would align the government’s payment policies more with its spending objectives in the long term.

Earlier this week I wrote about some unfortunate provisions in the 2027 final hospice rule related to non-hospice spending for enrolled patients. But today I am going to take a swing at another portion of the rule – the 2.3% payment increase.

The U.S. Centers for Medicare and Medicaid Services (CMS) needs to stop nickel-and-diming hospices with tiny rate hikes in a high-pressure economic climate.

Health care inflation continues to exceed historical averages, with the cost of delivering care rising faster than the proposed payment update. This trend comes as previous payment rules have fallen short in anticipating and accounting for ongoing market pressures. As providers face growing demand for services, CMS should take these economic realities into account and adjust payment updates to help ensure continued access to care.

Yes, I know that policymakers are focused on preserving and extending the Medicare trust fund and reducing the nation’s preposterously high health care expenditures.

In 2024, U.S. health care spending climbed to $5.3 trillion, a 7.2% increase from the previous year, following a 7.4% rise in 2023. The total equates to $15,474 per person and accounts for 18% of the nation’s economy. Health care spending also outpaced overall economic growth, with gross domestic product increasing 5.3% in 2024.

However, the reality is that greater investment in hospice would actually help to achieve that result.

That’s my opinion, but evidence backs it up. Strengthening support for hospice providers could produce broader savings across the health care system.

Hospice care saves Medicare an estimated $3.5 billion for beneficiaries in their last year of life, according to a joint report from the National Hospice and Palliative Care Organization (NHPCO), the National Association for Home Care & Hospice (NAHC), and NORC at the University of Chicago. (Since the report’s publication, NHPCO and NAHC have merged to form the National Alliance for Care at Home.)

I know many of you have seen those numbers before. If you read Hospice News, you have almost certainly seen them. But I will keep pushing those data until somebody with a proverbial government “checkbook” starts to listen.

Regulators have a responsibility to reduce overspending. In hospice, this could mean a focus on fighting actual fraud, waste and abuse. But it would be beneficial to the health care system, providers and patients if CMS focused more on beefing up the hospice benefit rather than feeding it crumbs.

As always, I love to hear your takes in the comments!

I am excited to travel to Iceland this week! I am stoked to visit some Viking historical sites, among many other things.

By heritage, I am mostly descended from a few Native American tribes as well as the Vikings who settled in Ireland and Scotland, and I love exploring the history of these cultures. I read a lot of history books overall. The subject was my second academic love after writing and language.

So, as I am sure you all know by now, the 2027 final hospice rule from the U.S. Centers for Medicare & Medicaid Services (CMS) dropped last Thursday. Per usual this led to a mad scramble at the end of the day to get the news out. We strive to get stories like this out to our Hospice News subscribers within 15 minutes and then update them as we gather more information.

The rule was something of a doozy, as CMS seems to be trying to hold providers accountable for something that is not really – or at least not entirely -- a hospice problem.

That would be non-hospice spending. CMS made a big deal out of this in the rule with two new provisions that could intensify scrutiny on providers and increase regulatory burden in a tight reimbursement environment.

One of these is the creation of a service and spending variation index (SSVI), a new scoring system that uses nine claims-based measures to evaluate hospice utilization and non-hospice spending. CMS said the index is intended to identify hospices that may warrant greater education and regulatory oversight.

According to the agency, data collected through the SSVI will be used to inform beneficiary decision-making, support data analysis and strengthen program integrity efforts.

The rule would also require hospices to provide all patients and, where applicable, their representatives, with an addendum to the hospice election statement at the time of election. Under current policy, hospices are only required to furnish the addendum upon request.

While this non-hospice spending issue may indeed be a serious problem, this is not hospices’ fault. In many cases, they may not even know that the patient has sought services elsewhere, and they generally are not the ones who do the billing for these “unrelated” treatments.

CMS’ position is that the hospice benefit is structured in such a way that spending on non-hospice services should be negligible for patients approaching the end of life. But it’s concerning that, if spending on non-hospice spending has indeed increased, CMS is framing this trend, at least in this final rule, as a compliance concern almost exclusively.

The reasons why such spending has risen could be multi-faceted -- for example, changes in hospice patient acuity could be a factor. Furthermore, there is an underlying assumption that a hospice should manage a patient’s care well enough to avoid non-hospice spending near the end of life, but patient choice, medical emergencies or coding decisions made by non-hospice providers are just a few of the factors that could be contributing to a rise in non-hospice spending.

I hope that this effort from CMS provides a more complete picture of the often complex web of care that is delivered for hospice patients, and distinguishes between hospice failures and other drivers of increased spending.

Like Indiana Jones said in one of my favorite movies, “They are digging in the wrong place.”

I think the fact that CMS went this route is misguided and disappointing. But as always, I’d love to hear from the Inside Hospice community. What do you think of the final payment rule, and the non-hospice spending provisions in particular? Drop a comment!

I remember when I had to tell my dad that my brother was dead.

This happened in the 1990s, so before cell phone use was widespread. So he had a beeper. When he called back, I took the phone into the basement so he couldn’t hear my mother screaming in the background.

I remember the sound he made when I told him. His pain was palpable. It hit me in the chest like a freight train. But I could do nothing to help. I have never in my life felt more helpless. Later, I also had to break the news to my sister and my grandmother. I went in a police car to pick up my grandmother and bring her to the house to comfort my mom while I dealt with the cops, the coroner, the fire department, paramedics and I don’t know who else. Some of the memories are kind of a blur.

Hospice care, with all of its benefits, begins with a difficult conversation. While my worst-ever conversation was a somewhat dramatic example, hospice staff routinely must tell patients and families that death is coming and ask how they wish to face it, how they wish to live until that moment. I don’t envy them this responsibility.

Goals-of-care conversations should really happen upstream of hospice. Patients benefit the most from having their wishes documented before they reach a crisis point. However, many, if not most, other health care professionals are not trained or comfortable having these conversations.

To some, it may seem antithetical to their medical training – which is focused on sustaining and prolonging life and curing disease. They, like the families they serve, are often not ready to face the reality of death.

A 2014 study published in Palliative Supportive Care reported that more than half of respondents deferred conversations about advance directives to emergency room physicians. In 2016, 88% of residents reported little to no training on end-of-life care during residency.

This lack of training is a serious problem. It can lead to patients coming to hospice too late to reap the full benefits or not at all. It can lead to intensive, sometimes painful or invasive, treatments at the end of life that patients don’t really want, or that won’t help them in the long run.

My parents did it the right way. They sat us down and told us their wishes. They gave us information about their bank accounts and insurance policies, gave us keys to their house, the combination to their safe – basically the essential things we needed to know to manage their affairs if they were gone. It was a painful conversation to have. We didn’t want to think about it, but we must.

We need to have the difficult conversations to ensure quality, patient-centered care as life nears its end, or, preferably, long before.

Some healthcare providers are starting to refocus on this. I was struck that when my grandson, Caleb, was being born, a nurse came into the waiting room to ask me if I had an advance care plan. I wasn’t even a patient there.

We need more of this, and soon.

Last week was a rough one, and I was glad to have a half restful weekend. I needed that.

I want to talk today about Medicaid work requirements. In a nutshell, beginning Jan. 1, 2027, non-disabled adults ages 19 to 64 enrolled in Medicaid through expansion programs must complete at least 80 hours per month of work, education or community service. The requirement includes exemptions for caregivers and individuals with certain health conditions. You can find more details in this Hospice News piece that went out in our newsletter on Monday.

When the U.S. Centers for Medicare and Medicaid Services (CMS) gift wrapped this little present from the Trump administration to sick and struggling families, they may have made at least one little oversight – hospice and palliative care patients are not on the list of exemptions.

Now, one could argue that those patients would be covered under the exemption for people who are blind, have a certified physical, intellectual, or developmental disability affecting activities of daily living or have a serious/complex medical condition. But vague or ambiguous elements in regulatory language can cause serious problems and create a slew of unanswered questions.

For example, who exactly qualifies for this exemption? What conditions are considered “serious or complex?” How are CMS, state agencies or Medicaid Managed Care Organizations going to identify those patients and ensure they implement any exceptions to this rule?

Without clarification, this could potentially lead to claims denials, delays in care or even expulsion from the Medicaid program for the most vulnerable patients. It also puts the providers who care for them at some degree of financial risk.

Policies for hospice eligibility within Medicaid also vary among the states, with some requiring prior authorizations like Alaska, Nevada, Mississippi and others. Will patients be denied these authorizations because they did not meet work requirements?

I wasn’t able to find national data on how many patients receive hospice coverage via Medicaid. Medicare covers the vast majority. Also, many of those patients are dual eligible for both programs. However, a contingent of patients, regardless of how large or small, do get their hospice coverage via Medicaid, and they should be protected. All patients should be protected.

CMS needs to specifically add hospice and palliative care patients to its list of exemptions. They should also issue at the very least some type of subregulatory guidance on how to address, verify or report exemptions for medically complex, seriously ill and frail patients, including defining those terms in this context.

My cousin Stephanie died on Tuesday. It was sudden, and she was quite young – close in age to my oldest daughter who will be 32 in a couple of months.

So the cycle of grief begins again. I am sad and exhausted. But, by necessity, we must press on, even when it feels like the world should stop turning.

Death is never easy or pretty. I can’t tell whether a sudden demise is worse for a family, or perhaps watching and caregiving a long decline is a harder road. I don’t know. I just know that however it comes, it always hurts.

I’ll have to recommend to Stephanie’s immediate family that they look into bereavement counseling from a hospice. I hope I can find a good program. The family is split between the Chicago area and the Phoenix region.

As I start to evaluate my own family’s options those markets, I will be engaging in a process that has become trickier as the hospice sector has expanded: Distinguishing differences among various hospice organizations. Competition in the field has never been tighter as new providers continue to proliferate, driven primarily by new or expanding for-profit companies. In this environment, a critical piece of the puzzle is differentiation. What makes your hospice stand out among its peers?

Consider this quote from a recent LinkedIn post by the home care and hospice executive Kurt Kazanowski:

“The hospice industry has evolved dramatically over the past two decades. Nearly every market is more competitive than ever before. Hospitals, physicians, senior living communities, and families often have dozens of hospice providers from which to choose. Yet, despite this increased competition, many hospices continue to market themselves in remarkably similar ways. They all promise compassionate care, experienced clinicians, 24-hour availability, and a commitment to dignity at the end of life. While these qualities are essential, they are no longer differentiators — they are expectations.”

Hospices can distinguish themselves in four main ways, according to Kazanowski. These are:

• Clinical expertise

• Creating programs that address specific needs within their communities

• Shifting from being a vendor to referral partners to a strategic partner

• Becoming an industry thought leader

Clinical expertise speaks to hospices’ core mission. Providers should strive to become known for exceptional care. This expertise extends beyond quality scores and into the realm of disease-specific programs and palliative care integration.

As hospices develop programs designed to meet specific community needs, they should consider the following factors, according to Kazanowski:

• Volunteer-driven programs

• Leveraging technology to address communication challenges, particularly in senior living communities

• Caregiver education

• Veterans’ recognition initiatives

• Integrative therapies

• Family caregiver coaching

• Telehealth support

• Community education

“Referral sources remember hospices that solve difficult clinical problems. Families remember hospices that prevented unnecessary suffering. Clinical excellence becomes your reputation,” Kazanowski said.

Becoming a strategic partner for referring organizations is also key. This means that the hospice becomes a greater resource for them than simply taking on their terminally ill patients. Every referral partner has objectives, goals and problems. The hospice that understands those issues and needs and can offer solutions or improvement is better set up to succeed.

Finally, hospices can differentiate themselves by becoming thought leaders. I recently did a piece on becoming an industry thought leader on Hospice News. Check that out here.

For Kazanowski, this means that a hospice can develop a reputation for being an organization that advances hospice care through education, innovation and expertise. Examples for how a provider can achieve this include developing a physician advisory council, publishing articles and white papers, speaking at conferences, conducting educational programs and participating in research, among others.

What tactics does your hospice use to differentiate itself from its competitors? Let me know in the comments.

I am back at work today after a week-long camping trip. The weather was beastly hot, but it was still glorious good fun.

Turning to hospice, the U.S. Department of Health and Human Services (OIG) has added a project to its work plan that will examine routine home care payments for hospice beneficiaries in nursing homes. The current status of the project is “announced,” according to OIG. So the agency is really just getting started.

But when completed it could have a significant impact on the hospice community. Essentially, OIG is looking at whether the personal care services that hospices provide to nursing home patients are duplicative. If OIG finds that this is so, the agency will likely recommend that the U.S. Centers for Medicare and Medicaid Services (CMS) reduce routine home care payments for patients in nursing homes.

“Paying the hospice the full routine home care rate that covers personal care services when these services are already required from the nursing home can undermine the efficiency of Medicare payments and add to the incentives that bad actors have to exploit the program,” OIG indicated in its work plan. “This review will determine Medicare payments for routine home care provided to hospice beneficiaries in nursing homes, estimate potential cost savings from reducing the payment to address the inefficiency in the payment structure, and examine practices of hospices with a high percentage of their beneficiaries in nursing homes.”

Though the issue is worth examining, the project kind of worries me. The prospect of payment reductions is troubling. Many hospices are also operating on a shoestring or are beset by margin compression and reimbursement pressures in which rate increases do not keep up with the rate of inflation or other rising costs.

Nursing home residents make up a significant contingent of hospice patients: about 14.5% according to the National Alliance for Care at Home. An across-the-board payment reduction could hurt hospices considerably, particularly those that have high percentages of nursing home patients in their census.

This review by OIG must take into account that regardless of what the nursing home is doing, hospices are nevertheless providing these personal care services. Careful examination may reveal that these services are redundant, but I think OIG needs to take a good look at the exact nature and frequency of personal care services provided by the nursing home and how they compare to those that hospices provide.

Hospice care is designed to be a comprehensive set of services that addresses multifaceted patient needs, including personal care. I don’t think we should deny nursing home patients that additional layer of support. Nor should we penalize hospices who care for those patients.

What do you think about this prospect? How might it affect your organization if it were to come to pass? Please drop a comment.

Fun fact: I dabble in tarot card readings. I really do it just for the occasional friend. Most often, I do readings for myself.

I don’t believe that the cards hold supernatural powers, nor do I think they can prognositicate much of anything. However, I do think they can be useful tools for self-reflection. They can raise new questions or help one see a situation from a different perspective.

So I thought I would do a reading for the hospice community, just to see what happens. I asked the question, “What’s in the cards for the hospice community?” and then I drew three cards.

A typical three-card spread in the tarot can be interpreted in a number of ways. I choose the rubric in which the first card represents a situation, the second a necessary action, and the third an outcome.

Here’s what came up:

Eight of Swords (The Situation)

The Eight of Swords symbolizes mental barriers, perceived limitations, and a sense of powerlessness, according to a number of guidebooks. The card is commonly interpreted as suggesting that many obstacles may be psychological rather than insurmountable, with a shift in perspective viewed as the first step toward overcoming them.

I wouldn’t quite say that hospices are “powerless” these days, but it’s true that hospice providers sometimes are sidelined and can feel a sense of being at the mercy of regulators, payers and other players in the health care sector. For example, CMS tying palliative care to the home health benefit in the recent prospective payment rule excludes hospices that aren’t Medicare-certified in home health.

However, many hospice providers are undergoing shifts in perspective that could help them overcome limitations. In particular, providers are expanding their mindsets to become more diversified organizations.

One key aspect of this is providing upstream care. More hospices are providing services earlier in the patients’ disease trajectory, like palliative care, PACE, home-based primary care and home health care, among others.

This trend exists across the nonprofit/for profit barrier. Many hospices in both sectors are reinventing themselves as a continuum of care that can begin far upstream of the end of life.

Another arena for reinvention is value-based care. While hospice care itself is largely excluded from those programs, providers in the space are still working to test some newer value-based models, often through the aforementioned upstream services.

Examples include these mouthfuls of words from the U.S. Centers for Medicare & Medicaid Services (CMS): the Accountable Care Organization Realizing Equity, Access, and Community Health payment model and the Guiding an Improved Dementia Experience (GUIDE model). A wide range of hospices are participating in these programs and pursuing innovations like specialized dementia care services as a result.

King of Wands (Necessary Action)

The King of Wands is commonly associated with visionary leadership, charisma and entrepreneurial ambition. In traditional tarot interpretations, the card represents the ability to channel passion and creativity into focused, purposeful action. It is often seen as reflecting a confident, decisive approach to pursuing goals and leading others.

This almost seems self-explanatory. In order to pursue innovation and invention, hospices have to be bold and take calculated risks. A PACE program can become a lucrative business that provides excellent and much-needed care for its participants. However, operators have told me that such programs typically take up to three years to break even. To invest in such a program, a hospice has to have a careful plan to foster sustainable growth but also exhibit confidence to launch into new models that do not have an immediate payoff. In other words, they need to have a vision.

To drive change, hospice leaders must both put on their thinking caps and roll up their sleeves, determine what is achievable, the resources and people they will need, and have plans for the potential outcomes.

Hospice might not be the biggest, most powerful healthcare sector, but the passion of hospice providers give them tremendous power, if they have the confidence to break new ground.

Page of Pentacles (The Outcome)

The Page of Pentacles is commonly associated with the beginnings of new endeavors, financial opportunities and a willingness to learn, so there’s a good deal of symmetry among the three cards.

In traditional tarot interpretations, the card represents the early stages of developing skills, pursuing tangible goals, or exploring new ventures. It is often viewed as encouraging careful planning, steady effort and a long-term approach to personal or professional growth.

Of course, life is not as simple as the cards make it sound. It takes courage to do something new. A hospice can do all the right things in pursuing a new venture and still struggle or even fail. The unexpected happens and “X” rarely marks the spot.

That said, the health care world is changing, and hospices may want to think about the ways they can change with it. Success will require visionary leadership, effective planning and a lot of grit. But the cards suggest that if hospices adopt a start-up mentality today – that is, a blend of entrepreneurial innovation and the humility to learn lessons along the way – but are committed to playing the long game, they will be rewarded.

What are some of the ways you see the hospice world changing? Please drop a comment.

Greetings! I am now far away from my desk in northern Michigan, camping my heart out. But I wrote this before leaving, so I wouldn’t be leaving my readers hanging for a week. Thanks again to all of you for tuning into Inside Hospice.

Today I want to talk about goals-of-care conversations. Many patients miss out on the benefits of hospice care – or come on service too late – because they lacked timely access to these discussions. Many health care providers are not training clinicians to facilitate such conversations, and for some people, these conversations can seem antithetical to their perceived mission of curing disease and staving off death.

I recently had the pleasure of speaking with Dr. Ileana Leyva, regional medical director for the large hospice provider VITAS Healthcare, for a Hospice News article on improving access to the benefit for cancer patients. But we also talked about goals-of-care conversations. Dr. Leyva gave me some tips for conducting them effectively that I thought I would share with you here.

Dr. Leyva told me this:

You have to do some prep work. I tell my docs, “You can’t wing it.” You have to do a record review. You have to know what you’re walking into. Many times, I describe it as I feel like I’m a referee with a whistle in my mouth, because I’m referencing five different physician specialties during these conversations. So, rule number one is you have to be prepared for it.

Two, you have to set the stage. You can’t just walk in and decide that we’re going to do this right now. You have to invite that conversation, plan it with the patient and whoever is most important to be present. At times patients have certain people they don’t want present, because they’re not going to be as open with you if there’s a particular person in the room.

We have to leave all our biases and judgments at the door, because it’s not our journey. It’s the patient’s journey. That can be very, very hard, because we know what that trajectory will look like for the patient and they don’t. So it’s really a conversation about helping me understand what you’ve been told and what you’ve understood of where things are, and then the conversation of what you think is happening and [based on that], guiding them to better understand their disease.

At the same time, asking the key question: What’s most important to you with regard to where you’re going to live your life? How do you want to live your life? I have patients who say, “I want to be home. I don’t want to go back to the hospital. I’m done with the tests and anything that’s invasive.” And I have had other patients who’ve told me, “If you can prop me up in the corner, and I can watch my grandkids, that to me is a good quality of life.”

So, it’s getting what’s most important for the patient and trying to then be able to implement the plan of care around what’s important to the patient and what’s feasible and viable as well. So, that’s why I say it’s also refereeing five or six other sub-specialties into not undermining what a good plan of care may look like.

It’s a long conversation, and it’s never a one and done. It’s a fluid conversation that takes place over time, and it’s important to do more listening during the goals-of-care conversation than it is to do speaking.

I really appreciated Dr. Leyva’s insights.

Hospice and palliative care providers know how to have these conversations, perhaps better than many clinicians in other settings. What are your best tips for holding them? Let me know in the comments.

I am gearing up for a week-long camping trip starting next Tuesday, so I’m in a mad scramble to write all my stories in advance as well as prepare for the excursion itself. Thus, this has been a busy week. I hope everyone out there is also taking time to enjoy the summer.

The camp out will have a Viking theme this year, complete with aligned art pieces displayed onsite, a “Brunch of the Gods,” theme-appropriate garb and an axe throwing yard made from wood and chain link that we will assemble when we get there. I am looking forward to it!

But right now I have other things to say.

In its 2027 proposed rule for home health agencies, the U.S Centers for Medicare & Medicaid Services (CMS) clarified that those providers can use certain billing codes to cover community-based palliative care.

This action by CMS could help improve access to palliative care in the United States, which is sorely needed. However this impact could be very limited due to the structure of the home health benefit.

Important to note is that CMS isn’t really doing anything new here. These billing codes for palliative care already exist and home health agencies can already use them. The language in the proposed rule was little more than a reminder of that.

What will really determine how significant this might be is subregulatory guidance forthcoming from CMS that will provide further details on how providers should use the codes and in turn offer palliative care.

One issue is that patients will have to meet the eligibility requirements for home health care before they can receive palliative services from those agencies. This means that the patients will have to be homebound. The many patients who are not homebound but could benefit from receiving palliative care are excluded (though they may receive those services in another setting or from a different type of provider, like a hospice).

Second, hospices, which provide about 50% of palliative care in the United States according to the Center to Advance Palliative Care, can’t use these billing codes unless they have a Medicare-certified home health business. The hospice sector is particularly rich with palliative care expertise, and they can’t get involved through this home health benefit.

Third, home health agencies really aren’t incentivized to provide comfort care that is essentially non-curative. The quality measures for which they are accountable are largely improvement measures that indicate whether “grandma” is making progress. A palliative care patient might not show those signs of improvement, which could impact home health agencies’ quality scores.

The question also remains as to whether home health agencies have the capacity and expertise to effectively provide palliative care, given current workforce constraints and the limited availability of training to provide those services. Can they provide the full scope of interdisciplinary palliative care? Will the reimbursement support that?

An additional unanswered query is: What do we mean by palliative care?

A common adage says, “If you’ve seen one palliative care program, you’ve seen one palliative care program.” CMS to date has not prescribed a care model that indicates what “palliative care” should look like through this benefit. What actually will these patients be getting?

I hope that some of these questions can be addressed through the forthcoming subregulatory guidance, but of course that remains to be seen.

More details will come in a Hospice News piece slated for tomorrow, but I wanted to share my opinion on this CMS action here. What is your opinion on this?

I hope everybody enjoyed the July 4 holiday. We are a troubled nation these days but can still find reasons to celebrate. I had friends come to visit from Minneapolis, people I consider to be chosen family, and it was great to spend time with them and our mutual Chicago-based chums.

The government is an active 250-year-old, giving the hospice industry quite a bit of notable news to chew over right before the holiday weekend.

The U.S. Centers for Medicare & Medicaid Services (CMS) in its proposed home health rule for 2027 introduced new measures intended to combat fraud, waste and abuse. While they appeared in a home health proposal, these measures would also apply to hospice providers as well as other health care settings. The proposals, if finalized, are projected by CMS to generate approximately $82 million in annual savings.

CMS Administrator Dr. Mehmet Oz said the proposals would provide the agency with additional tools to protect Medicare beneficiaries and taxpayer funds by ensuring that only qualified providers and suppliers participate in the program.

Among the proposed changes, CMS would expand its authority to recover Medicare payments from providers and suppliers whose enrollment is revoked. Under current policy, the agency can recoup payments retroactively only for certain types of enrollment revocations. The proposal would extend that authority to all revocation categories, allowing CMS to seek repayment regardless of the reason for the revocation.

CMS is also proposing to broaden the circumstances under which it can deny or revoke Medicare enrollment. The proposed changes include allowing the agency to:

• Revoke a provider’s or supplier’s Medicare enrollment if it determines the enrollment poses a high risk of fraud, waste or abuse because the provider or supplier is located in a geographic area with an unusually high concentration of Medicare providers and suppliers.

• Deny or revoke Medicare enrollment for providers or suppliers convicted within the past 10 years of certain misdemeanor offenses related to sexual assault or financial misconduct.

On the surface, these aren’t bad ideas. Strengthening barriers to entry could help curb the proliferation of fraudulent providers entering certain markets. Though I am a little concerned about the agency’s language on revoking a providers’ enrollment simply because of where they are located. It makes a certain amount of sense to apply additional scrutiny to new providers in those regions, as well as a close examination of existing companies.

However, CMS has been somewhat undiscerning in its payment suspension and revocation practices to date, with legitimate providers swept up in enforcement dragnets. I think some safeguards to protect those legitimate hospices should also be in place. Fraud needs to be confirmed before enrollment is revoked or payments suspended, which could cause a hospice to shut down.

Another major provision in the proposed rule was to allow payments for community-based palliative care through the home health benefit. You will see more from me on this issue here as well as further coverage on Hospice News after we gather some more information.

In the meantime, what do you think about these new proposed program integrity provisions from CMS? Drop a comment.

Conversations with loved ones about our end-of-life wishes, goals and values are essential, and we must take them seriously. And as hospice providers know all too well, avoiding such conversations can complicate people’s process of transitioning to hospice care.

Therefore, it’s in the interest of providers to promote these conversations. One hospice and palliative care social worker, Lisa Pahl, developed a game with this objective.

In fact, a number of games, usually with cards, have emerged in recent years that are designed to foster those discussions in a thoughtful but entertaining way. I have seen at least three, and I think these games could serve as an interesting tool for families as they think about these issues.

Pahl’s game, The Death Deck, uses multiple-choice cards and open-ended discussion questions to examine players’ feelings about death and dying, the legacy they wish to leave and their understanding of end-of-life care options like hospice, as well as their beliefs in things like ghosts or an afterlife, among many other topics.

I had the idea of convening a group of hospice and palliative care leaders to play this game with me. I wanted to see the kinds of conversations The Death Deck could stimulate. Also, quite frankly, I have owned this game for years, and no one has ever been willing to play it with me – a testament to how uncomfortable the subject matter is to many people.

The group that came together to do this was fantastic. They were open and forthcoming. They brought the full measure of not only their expertise in the field but also the full measure of their humanity, lived experience and hopes for the future.

Some aspects of the game were deeply personal, so I am not going to quote the participants by name when I reference those portions, out of respect for their privacy. However, I definitely want to extend my sincere thanks to hospice and palliative care physician Dr. Michael Fratkin, Hospice News Senior Reporter Holly Vossel, Mettle Health Co-Founder Sonya Dolan and Altonia Garret, COO of the hospice provider Blue Ridge Care. I also answered the questions.

We played for one hour and kind of wanted to keep going, but our duties called. We followed that with a brief Q&A about the experience.

Dealing with death growing up

The first question we encountered was multiple choice — Growing up, my family dealt with death:

a) By talking openly, sharing feelings, stories, and dark humor

b) In a no-nonsense sort of way, sh*t happens, you move on

c) Keeping it all bottled up and avoiding any discussion.

Not all of us fit neatly into one of these three categories, but the question did foster a good discussion. Here are some excerpts from the responses:

“I have had a lot of deaths over my life. As a child, there wasn’t a lot of discussion. It’s very rooted in faith, and ‘on to the other side,’ and transition in the celebration of life, all of that. So it’s kind of like when it happened, it was joyous. It was sad, sure, but we recognize that folks are going to join the ancestors, and it’s a celebration of this life that was lived … but there wasn’t a lot of talk about it, though, and not a lot of talk leading up to the death.”

“It’s definitely, ‘C: keeping it all bottled up and avoiding any discussion.’ I know after my brother died, I was afraid to mention his name to my parents, because it would upset them so much. And I actually had a cousin, John, who died the same way. He was shot at age five, and after the funeral, family members went through his parents’ house and took down all the photos of him off the wall, thinking they were being kind to remove a painful reminder, but it was almost like erasing him a little bit, and I find that kind of disturbing. So, definitely keeping it all bottled up was our approach.”

Imagining your mortality

One of the more open-ended questions we came across was, “Would you say that you imagine your death or the death of your loved ones more often?”

“I tend to be a person that worries about others more, especially with my parents. Full disclosure, I’ve been a full-time caregiver to both parents in different roles. They both have their own chronic conditions, and I started that too early, I think … I always worry about – for instance, my father, who doesn’t live anywhere near me – what could happen to him. It has happened, I have had to drop my life and abandon [my colleague] for a week, and go down to Florida to care for him. I worry what would happen if he could die without me present.”

“I deal with a lot of worry that I’ll get the illnesses that my patients get. So lately, I’ve been feeling anxious about ALS, because I’m working with a couple of guys with ALS, and what if that happens to me. I always think if there’s something at the sort of boundary of empathy that I sometimes absorb anxiety for it. So I thought about it a lot long before I had a family, and now that I have a family, I think about my children and my wife. When she gets a pain in her tummy or something like that, I am kind of more anxious than I might look on the surface.”

“When I was little, I would actually do very deep dives into what would happen if my parents died. I [would] really, really think about it, and to the point of sobbing. But I think it was a really good exercise of just what is it to experience loss or think about loss … My mom did die in my 20s, and she was like fully my person, and that’s why I’m even here in this space doing this work. It is because of that, but I think her death really opened for me that this is around all the corners, if she – someone who is healthy, someone who didn’t have any crazy, dangerous habits – has died.”

Sharing your feelings

Another multiple choice question we considered was this – “How often do you let the ones you love know how you feel?”

The options were:

1. Very rarely, I’m not one to share my feelings

2. Fairly often, in the right moments and on the right occasions

3. Constantly, and they’ve asked me to stop.

Here are a couple of the answers:

“I’d say for me it would be ‘c’ – it’s constant, but they haven’t asked me to stop. When I talk to my daughters or my grandson, it’s the first thing that I say. ‘Hi, I love you.’ That’s how I lead, and I’m saying, saying those words to friends and people all the time. I feel like death is always in the room, whether we like to think about it or not. Anything we do or say could be the last thing we do or say. So, I think a lot about what I want those words to be, what I want those actions to be. Do I want it to be something selfish, unkind or angry? Hopefully not. So, yeah, I do kind of constantly tell them how I feel.”

“I am squarely in ‘c.’ I do it a lot. I make a point to do it. I do a lot of texting of people just out of the blue to tell them I’m thinking about them and what I appreciate about them, or what I love in my relationship with them. This is the thing that I have to give, my love and care and attention. Why would I not do that on a daily basis, and let people know how I’m feeling?”

Coda

These are just a handful of examples of the topics we covered, but I think they make a solid representative sample. At the end, everyone seemed to agree that playing the game had been a positive experience that generated some food for thought about how we feel, what we want and what we need to do (like, for some of us, documenting our health care wishes). This was a thought-provoking and fun exercise, and I got to know some great people just a little bit better.

“Death is always in the room.” “This is around all the corners.” We need to talk about this thing that we all must confront and stop treating it as a dirty little secret.

I also think that awareness of our mortality and its potential imminence can bring out our softer edges, something that may be sorely needed in today’s world.

What do you think? Would you play a game like this? Do you talk about these issues and concerns with your loved ones?

Today, I am grateful for air-conditioning, ice and chocolate. Chicago is scorching hot this week with temperatures expected to rise beyond 100 degrees. Not everyone has the privilege of taking shelter and relief from the heat, and I am thankful for the opportunities that I have.

The chocolate thing is largely irrelevant to the temperature; I just happen to be eating some at the moment even though it’s the early morning.

While I’m starting a new day here with a sweet treat, I’m also reflecting on New Day Healthcare. I recently enjoyed a conversation with Kathy Poland, the newly appointed CEO of the home health and hospice provider. She succeeded prior CEO G. Scott Herman who sadly passed away about four months ago. Since then, Kathy has served as the company’s interim leader.

I published the interview on Hospice News last Friday. However, due to the length of the piece, some material didn’t make it into that version. To my chagrin and that of my fellow journalists, most readers only peruse about 20% to 28% of words on the page when it comes to web-based content, according to research by the Nielson Norman Group. So we tend to try to keep things on the shorter side when possible.

I wanted to share the rest of the interview here, including Kathy’s thoughts about New Day’s home health business, the growing role of AI and what would make her feel like a success one year into her tenure as New Day’s top executive.

Here are the excerpts:

What are your growth plans for home-based care service lines in the next two years?

On home health, we’re in three states, and we’re caring for over 4,000 in those three states on our home health side. Medicare Advantage is obviously a big part of that, a large part of our population is Medicare Advantage. We have lots of contracts with Medicare Advantage payers. When I say lots, it’s an excess of 30 plus, where we are partnered with these managed care payers.

So you’ve got to be able to go in and talk to these referral sources, these hospital systems in acute settings, and say that we’re ready to not only take all of your managed care payers or Medicare Advantage payers, but we’re definitely here to take care of the ones that are your traditionals.

You have to have enough people to take care of the patients. It’s one thing to get the referral; it’s another thing to actually have caregivers, to have nurses, to have therapists to actually care for the patients.

So, the other part of the puzzle is you’ve got to have a culture and a recruiting system in place where you can attract people and retain people, and we excel. We retain most of our clinicians. We have a very low turnover rate.

Are there any AI use cases that you think are overhyped currently from your perspective?

There’s actually everything that we’re looking at right now, not overhyped. I think the word AI might be thrown around a little bit too much, and sometimes people will say, well, “I use AI.”

Well, then you have to ask for more clarifying questions: What does that mean? Does that mean using ChatGPT, or does that mean you’re using some technology that’s really impacting the patient care and the ability to go see more patients, or the ability to see improved outcomes?

What does it really mean? Because AI, the term is used a lot until you ask the clarifying question. Otherwise, you really can’t understand exactly what it means for your business.

Now looking into the future, if we were to have this conversation say a year from now, what accomplishments would make you feel like you’ve had success?

Well, step one is that the team remains intact. We have an amazing team that we’ve built, and we need that team to remain intact, and everyone to understand that we’re marching in the same direction.

Scott was a big personality. Scott was a big part of our culture. Scott, if you knew him, he could light up a room, he can make everyone laugh in some crazy ways, and he learned how to make people feel really comfortable bringing out the tough stuff, because humor was something he excelled at.

When you lose someone like Scott, [when] we all work together for decades and you lose someone, there’s an uneasiness at first. What does this mean? What does it mean for our company? What does it mean for our team? What did we all work together for all these years? What about everything we built?

So, keeping us intact is super important. We’re in a good spot, and then now is just building on that momentum [from everything that we have done together], keeping Scott top of mind, keeping the legacy top of mind, celebrating the wins. Then, overall, it’s about taking good care of patients. Are outcomes exceptional? They remain exceptional. Are we taking care of more that need our help? Are caregivers staying here with us? Are people staying here with us? And are we performing as expected? All those things are constant.

Those are the plates, and they’re always spinning. If all those things happen over the next 12 months, then it’s been a good year.

That’s it for today. I hope you’re all staying cool and comfortable. Try having some chocolate, but don’t let it melt.

My grandson Caleb turns 4 in a few weeks, and I am very excited about the whole thing. I am trying to decide what I should give him. He likes Spider-Man, monster trucks and, somehow, Michael Myers from the Halloween movies. He has never seen those movies.

But I must turn to a somewhat dryer subject, although one that might scare some hospice providers even more than another Halloween film: a recent Government Accountability Office (GAO) report recommended that the U.S. Centers for Medicare and Medicaid Services (CMS) transition hospice reimbursement to a per-visit system rather than a per diem. This would apply to routine home care.

Medicare spent about $27.5 billion on hospice care in 2024, according to the report. GAO estimated that for a large subset of routine home care services, Medicare would have spent roughly $7.6 billion less if payments were based on individual visits rather than a fixed daily rate.

We covered this on Hospice News here.

Proponents of these changes would say that per-visit payment would better align reimbursement with the actual services delivered and could reduce overpayments to providers that furnish relatively few visits. Medicare also could save billions of dollars and improve program efficiency.

However, I think this would be a bad move. Hospice and home health function very differently in terms of reimbursement, and they are not interchangeable.

Some have called hospice “the original value-based care.” The hospice benefit is a bundled, capitated payment system in which the provider assumes essentially the total cost of care. Home health doesn’t work that way. For one, hospice per diems include things that home health visits do not, such as durable medical equipment and medications.

Hospice care involves more than face-to-face visits, including care coordination, on-call availability, family support and interdisciplinary team management, among other things. Not to mention travel costs.

A per-visit model also could create incentives to increase visit counts rather than focus on patient needs, and major payment changes could affect access to hospice services, especially in rural or underserved areas.

GAO’s recommendation doesn’t really take the full picture into account.

Anyway, it would require an act of Congress to change the payment system so dramatically, and that seems unlikely to me.

Do you think that the hospice payment system needs reform? What kind? Drop a comment!

Also, here is a picture of Caleb to cheer us up:

Ahoy!

We at WTWH Healthcare, Hospice News’ parent company, had a large in-person meeting this week. We have all worked remotely since the pandemic, so it was great to see and reconnect with some of my favorite colleagues – and it was gratifying to be able to share how much growth and engagement we’ve had on Inside Hospice since launching just a few months ago. So, thank you all for reading, commenting and supporting this endeavor!

Today, I want to talk a little bit more about the recent rash of hospice Medicare payment suspensions.

Some stakeholders in the hospice space posit that recent payment suspensions on hospice providers by the U.S. Centers for Medicare and Medicaid Services could drive up health care costs by moving more patients out of hospice and into the hospital system.

I’ve reported extensively on the payment suspensions and the way that legitimate providers are being swept up in this crackdown, both on this site and on Hospice News, and more stories on this are on the way. Check out the linked stories for more context.

One of the major concerns associated with this is continuity of care. When a hospice isn’t getting paid or can’t sustain operations, what happens to their patients?

According to the conversations I have had with about 13 affected providers, these are some of the common outcomes:

• The patient is transferred to another hospice

• The patient stays on the original hospice’s census, but the provider stops accepting new patients

• The patient is discharged alive and does not receive further hospice care before they expire

CMS is trying to cut down the economic cost of fraud in the space, though some may question whether these suspensions – and the methodology behind them – is the right approach. However, some contend that the agency’s “sledgehammer” approach to fighting fraud could ultimately cost Medicare more money. The prospect that at least some of these patients wind up in the hospital or in an emergency department visit seems very probable.

We know that hospice reduces higher acuity care and saves the system a substantial amount of funds. I cited some of the data in another Inside Hospice post just the other day, so I don’t think I need to repeat it all here. In the absence of hospice, or if patient care is delayed due to a transfer, patients have few other places to turn than hospitals, according to one hospice CEO who spoke to me on background.

“After you discharge them, they may have to be readmitted multiple times. What’s the purpose of having Medicare pay $5,000 a day for multiple readmissions in the hospital?” the CEO said. “Why not let me pay $220 to a hospice and let them take care of them at home? That’s a huge cost savings.”

I think this is food for thought. It would be helpful to see some research into this to get some data on what happens to patients after these suspensions, but for now unanswered questions persist.

Also, I would like to point out one of Substack’s other features – Notes. There are short, separate posts that I have been using to pose questions to you, my readers. I get no responses. I think because the site doesn’t notify readers when one is posted.

This is my most recent note, with a question about the HOPE tool. I would love to hear your feedback on this. To find past posts of this kind, please click on the “Notes” tab at the top of the home page. Thanks for taking a look!

I read a fascinating article in Forbes a few days ago that I wanted to share here. For the piece, author Wes Kilgore interviewed Dana Corrigan, a former acting inspector general for the U.S. Department of Health and Human Services. Corrigan is also a former director for the Center for Program Integrity at the U.S. Centers for Medicare and Medicaid Services (CMS). In those roles, she was heavily steeped in the fight against hospice fraud.

In August 2025, the article reported, Corrigan and her sister had to place both their parents in hospice care within a matter of days. I was struck by Corrigan’s statement that hospice care as a lived experience was very different from what she saw in documents and spreadsheets in her regulatory office.

“It was surreal being on the other side,” Corrigan told Kilgore. “I spent a significant amount of time during my career analyzing fraud and abuse, taking actions against bad hospice providers, and trying new approaches. But seeing it through the eyes of a daughter caring for her own parents changed that.”

As much as I enjoyed the article, I wish it had elaborated a little more on this point and what differences Corrigan saw. But instead it moves on to talk about hospice fraud, which is appropriate given the trend’s prominence in the news lately and Corrigan’s background in that area.

Corrigan goes on to discuss the role of data breaches in hospice fraud, including the use of the dark web and other tools by bad actors to steal Medicare Beneficiaries Identifiers (MBIs). They then proceed to bill Medicare for patients who are not eligible for those services, often without the patients’ knowledge.

In Forbes, Corrigan recommends that state and federal regulators tackle bigger questions than a “Whack-a-Mole” approach to slamming individual fraudulent operations. This can include “harder policy questions,” such as certificates of need, changes in payment incentives and more robust surveys, among others.

One other interesting idea from Corrigan is to place limits on the numbers of hospices a physician can support, though that may run into questions about whether enough doctors are available to support current and future demand.

But, Corrigan maintains, the specter of fraud “overshadows a fundamental policy failure,” which is an outdated Medicare Hospice Benefit. I believe this view has merit.

As the Forbes article points out, and as I and many of our sources have said previously on Hospice News, the more than 40-year-old benefit was designed with cancer patients in mind. Cancer has a much more predictable trajectory than many of the diagnoses hospices encounter more frequently today, such as dementia-related illnesses and other neurodegenerative conditions.

Patients with these conditions often live longer than the designated six-month benefit period for hospice. The six-month terminal prognosis requirement can be a disservice to these patients who need longer periods of care, even though they can go through recertifications.

The requirement also butts hospices up against compliance concerns, such as the Medicare payment cap, long lengths of stay and live discharges. A wave of payment suspensions recently sent to hundreds of hospice providers in certain markets were based on live discharges.

Palliative care expansion, hospice benefit reform

In Hospice News editorials, I have posed the questions: How nice would it be if we could just give people the care they need when they need it?

This could be easier said than done within the confines of the Medicare Hospice Benefit, especially in its current form. But other options exist as well, such as the establishment of a community-based palliative care benefit that would offer comfort care to the non-terminally ill. Corrigan called for this in the Forbers article, and over the years I have called for this on Hospice News.

The National Hospice and Palliative Care Organization, which is now the National Alliance for Care at Home, advocated for such a benefit for several years. Now, the National Partnership for Healthcare & Hospice Innovation is working to design a model.

Expansion of palliative care, and the existence of a payment model that supports the full range of interdisciplinary care, could have a range of benefits. It would benefit patients in need earlier in their disease trajectory and aid in smoother transitions to hospice when the time is right. It could relieve some regulatory restrictions on accessing comfort care, and it could slash health care costs due to reduced hospitalizations and emergency department visits.

Corrigan also recommended extending the hospice benefit period from six months to one year to reflect the growing trend of longer stays based on patient needs.

“Six months or less feels different from a year,” Corrigan said in Forbes. “This is subjective, of course. But there is a really good study by Jonathan Gruber and Jetson Leder-Luis about how an over-focus on fraud prosecutions in hospice can be a mistake if it drives up overall health care costs.”

I believe that to be this study published last year from the American Economic Review. Early hospice enrollment for people with Alzheimer’s disease and related dementias was associated with nearly $29,000 in savings per patient over five years compared with traditional hospital care, the study found.

The researchers also found that when families avoid hospice because of fear or confusion about legal and medical decisions, patients often cycle back through emergency rooms, specialist visits and additional procedures, increasing costs to the Medicare system.

When families avoid hospice because of fear or legal confusion, patients return to emergency rooms, see specialists, undergo procedures and drive up Medicare costs, the study indicated.

Other research bears this out. Hospice care saves Medicare roughly $3.5 billion for patients in their last year of life, according to a joint report from the National Hospice and Palliative Care Organization (NHPCO), the National Association for Home Care & Hospice (NAHC) and NORC at the University of Chicago. NHPCO and NAHC have since merged into the National Alliance for Care at Home.

Corrigan raises some really thought-provoking points on these issues in the Forbes article that I think warrant greater attention in the policymaking space.

Things the hospice community should think about include:

• Does the Medicare Hospice Benefit need reform?

• How can the benefit be restructured to better serve the needs of today’s patients?

• Should the six-month terminal prognosis requirement be re-evaluated?

• Do we need a community-based palliative care benefit, and what would be the implications of that for patients and for the nation?

I would love to hear your take. Please drop a comment.