Today is one month before the temporary moratoria on hospice and home health enrollment in Medicare is scheduled to end on Nov 13.

Hospices have been waiting with bated breath to see if the U.S. Centers for Medicare and Medicaid Services (CMS) will let the moratoria end or if the agency will extend it for another six months, which it has the authority to do.

To date, the agency has given no indication of what it will do. At one point CMS said it would let providers know of its plans 60 days in advance, but that never materialized.

I urge CMS to end the moratoria in November as planned. The decision to implement these was misguided and the approach is too broad. This six-month ban on enrollment has inhibited patients’ access to care and stymied providers’ growth. It has prevented them from opening de novos and disrupted acquisitions and affiliations.

Also, some new providers in markets that are not known to have widespread fraud have been unable to open their doors.

The fraud issue needs to be addressed without question, but this is not the way to do it. A number of stakeholders have argued that a more targeted approach is warranted, such as a moratorium on enrollment confined to markets where fraud is prevalent. I can get behind this. But a ban on a national scale is a mistake and hurts providers and patients.

Do you agree? Drop a comment and let me know.

I hope everyone is enjoying some crisp autumn weather! However, if you are in one of those weird sunshiney places, I hope you are having a nice time too.

I saw a fascinating post on Instagram of all places. This was from the Farewell Fellowship, a community of Tennessee-based death doulas who seek to foster better communication and education around death and dying.

The post was titled, “How We Talk About Death in a Death-Phobic Culture,” on the fellowship’s Farewell Library Instagram page. It raises the great point that we use the language of death to describe just about anything except death.

A few examples:

• My phone died.

• I am dead tired.

• I died laughing.

• They ghosted me.

• This deadline is killing me.

Now, consider these phrases you might here when someone dies:

• They are transitioning.

• They are no longer with us.

• They went to a better place.

• The patient is having a negative outcome.

• They passed away.

This is so interesting to me. After all, language goes a long way in shaping our understanding of reality and the world around us. Words matter. I’d stake my career on it, as my job involves lots of words.

We don’t like to say that a person “died.” We don’t like to say that they are ‘dead.” While this can seem gentle at best or innocuous at worst, I think this is problematic. We need to think about and discuss the prospect of death in plain language. We need to prepare, particularly when it comes to end-of-life care decisions like entering hospice.

I am going to try to remember to use the word “death” in its appropriate context. This is a little uncomfortable because, while I feel OK talking about death, I know it bothers a lot of people.

Nevertheless, I think using this kind of language is important to emphasize that death exists. It affects all of us whether we are talking about our own mortality or the loss of a loved one.

That’s part of the reason I used “death” twice in the headline on this post. Yes, that was on purpose.

Encouraging conversations about death and dying is part of my personal mission. Using “death words” may be a better way to do it.

What do you think about this tendency in the way we talk about dying? Drop a comment and let me know.

I am an avid soupsmith, and the season is finally upon us. My first for this year is a pumpkin-coconut curry soup. I made it this week, and I confess it was divine – as soups go.

Also this week, I had a great conversation with Satavia Hazley Austin, founder and former CEO of Star of Texas Hospice. Satavia saw her company through an acquisition by Uplift Hospice last year, and we talked about that transaction for a Hospice News article.

However, since the sale of Star of Texas, Satavia has positioned herself as an educator in the end-of-life space, including publishing an anthology book called Journeys to Goodbye. I’d like to share her insights on that work here.

Here are some excerpts from the interview, which has been edited for clarity and length:

In addition to being a hospice owner and a clinician, you’ve also been an educator and an author. What can you tell me about that work?

When I went to a hospice agency for the first time, they did not hire me for a nursing position. They hired me for a liaison-educator position, and really, it was a sales job. I didn’t know enough at the time to understand that it was actually going to be totally sales.

I knew they appreciated me having a nursing degree and wanted clinical expertise on the team, but it turned out I was not an admission nurse at alI. I was totally business development.

In leading up to being an author and writing Journeys of Goodbye, it stems from my earlier days in that I’ve always felt like I was an educator, an advocate in my sales role. I never felt like I was pitching families. I really felt like I was educating the community on services that were offered to them that they didn’t really know about.

As my career grew into other senior leadership positions, I always felt like that was the goal for everyone on the part of the agency too. If you work here, you need to love and appreciate what we do so much that you want other people to know that hospice exists, and we’re here to help families.

The biggest thing for me in hospice, coming from a nursing background, was having an opportunity to be in that [interdisciplinary team (IDT)] meeting. That gave me so much joy. I love that process of having the doctor there, the nurse there, the social worker, the chaplain, and oftentimes a CNA because it gave you such a well-rounded view of the patient.

When I exited from Star of Texas, I had always had this like fire in my belly to want to write a book, and it really was always after a dynamic IDT meeting. I would think, “Oh my God, somebody needs to hear that story.” Storytelling shows people that they’re not alone. They can find hope in that they are not the only ones experiencing this.

What led you to work on your book?

When we exited, I was like, “Okay, now I finally have time to write the book.” So, I curated it, and it was an anthology project. I pulled together some physicians, some nurses, social workers, just an array of people, and got their input on what death and dying meant to them and what experiences they had. Not all the stories are sad. They also give so much hope.

I felt like we had so many stories inside of us that I wanted to make sure that I was able to get out into the world. The people that co-authored with me were so happy that we did it. That’s the point of the book— to connect with other people through storytelling and be able to share with the community the great work that hospice does do.

Now we have an annual forum every November. My hope is that I will be able to continue that. That’s my heart project in terms of how I want to stay engaged and stay involved, because hospice is very near and dear to my heart.

I went to an inspiring event this weekend called the Chicago End-of-Life Expo, which represented a grass roots effort to motivate people to discuss and prepare for death and dying.

The expo was the brainchild of Erica Reid Gerdes, founder of the end-of-life planning advocacy group Waxwing Journeys, and activist and author Becky Robison. Robison operates the website www.deadparentswhatnow.com, and her book with the same title published in January.

Reid Gerdes, a death doula, met Robison last summer at the Funeral Consumers Alliance conference, and they soon became fast friends. Soon after, they began discussing holding an event in partnership with Comedian Alison Zeidman, who performed her show, “Ready to Die” at the expo. The show focuses on her experience with her parents’ deaths and a comedic tour through elder care and end-of-life planning.

“The goal is education and to showcase all of the amazing death workers in Chicago. We’re all a community. We’re all colleagues,” Reid Gerdes told me at the expo. “So, I want to just elevate the other people doing this great work and let people know that there are accessible ways to deal with end of life that aren’t traumatic.”

Robison lost her mother in 2020 from liver disease, and her father died in 2023 of pancreatic cancer. This was the start of a “rough couple of years,” she said.

At the time, she told me, she hadn’t anticipated the logistical burdens that come with a loved one’s death.

“I knew that the grief was coming. What I did not know was the logistics. I knew that my dad had a will. But where do I bring it? What do I even do with it?” Robison said. “My relatives were certainly trying to help me. They were very supportive, but no one seemed to know, like step by step, what do I need to do with post-death logistics. I’m an eldest daughter, and I process grief through humor. And I was like, I guess this is my job now. I need to fix it for everyone.”

The expo featured a range of vendors and death-focused organizations, from a person selling handmade earrings (I was tempted.) to funeral homes, death doulas and others who work in the space. It took place in a bar on Chicago’s north side called the Sleeping Village, so I was able to grab a couple of beers to complement the great and essential conversations.

I went with my friend Joel Eastland, a safety professional and former firefighter and EMT. He and I run a PTSD support group at Burning Man events.

Zeidman’s performance was preceded by two talks by funeral directors that covered the dying process and its immediate aftermath.

“I use humor obviously to talk about death and other tough subjects because I get it’s hard to talk about for a lot of people,” Zeidman said during her performance. “We all go our whole lives not even wanting to think about it sometimes, but you know comedy gives us a way to start those conversations.”

They were also doing advance care planning and living wills onsite, with a lawyer and a notary present to advise participants and certify the documents.

One thing that surprised me was that no hospices were present. I would have thought that with their emphasis on community outreach and education, they would have jumped at the chance to be there.

Demystifying and talking about death are essential in our culture, particularly because so few are willing to do it. Fear and avoidance earlier in life leave people unprepared when they near death, whether it be the end of their own lives or the impending loss of a loved one.

“If people come away with a little bit more knowledge, mission accomplished,” Reid Gerdes said. “If people come away a little less afraid of death, mission accomplished. If people come away and they’re a little more curious about it, mission accomplished.”

I was thrilled to see an event like this, and I felt proud that it happened in my hometown of Chicago.

This time of year is always rough for me — specifically, this week. Sept. 25 is the day my little brother was shot and killed in 1991. Sept. 28 is his birthday. He would have been 48 this year. Three days after his death, he would have been 13.

That’s hard to imagine, my brother at 48. I often wonder what he would have been like as an adult. What would he have done? What would our relationship have been like? Would we still be as close? What kind of uncle would he have been to my daughters? Would he have had children as well?

Maybe I wouldn’t have felt so alone during difficult times if he had been there.

Unanswerable questions, but they traipse through my head often. It makes me angry that I will never know these things.

Grief never leaves us. It transforms us. We integrate it into ourselves, and it becomes part of who we are. And I am feeling that right now. I grieve for my brother. I grieve for my family’s pain.

I also grieve for the person I might have been if I hadn’t lived through that and the resulting PTSD. I will likely never understand all the diverse ways his death and my experience of it affected and changed me.

I remember on the night he died going in a police car to pick up my grandmother, bringing her to the house to be with my mother. The officer told me that my life was going to change now, and that I wouldn’t be the same after this. He was very right.

This is usually a beast of a week when it comes to the PTSD symptoms as well. Sometimes if feels like his death is still happening – right now. I can’t sleep. My hypervigilance intensifies, so I am constantly poised for danger and can’t relax. My mind is caught up with strategizing how I would respond to slews of highly improbable emergencies. And so forth. This is exhausting to say the least.

Metaphorically speaking, I wish I could stick my head up above water and take a breath.

I sometimes question whether I should share these more intimate stories about myself. Maybe I should stick to writing about M&A and moratoria and what not. It makes me nervous to share so much sometimes and puts me in a vulnerable position.

But my gut and heart tell me that these stories are important. I hope someone who has been in similar shoes might read them and feel less alone. I hope it helps my readers to understand the importance and sacred nature of their work as hospice providers, caring for the dying and for families reduced by loss to a raw nerve. People need care in those moments, the families too, and I thank you for showing up for them.

My brother’s death was violent and sudden, rather than the result of a prolonged illness that could have led him under the wings of a hospice. But I do think about how hospices could help people like me through the emerging practice of trauma-informed bereavement care, which Holly Vossel has covered on Hospice News.

Community-minded hospices should consider the prevalence of trauma-related loss when determining the scope of their community bereavement programs. Although these deaths fall outside the population hospices typically serve, hospice organizations are uniquely positioned to provide grieving communities with comprehensive, interdisciplinary support.

A deeper understanding of trauma-related loss can help hospices refine their community-based grief services and identify unmet needs. The distinct challenges faced by families experiencing traumatic loss also can create opportunities for hospices to develop creative, innovative approaches to bereavement care.

I am sorry to say that there would be no money in this. Medicare requires hospices to offer grief care but doesn’t pay them for it. But people need this, and perhaps no one is better poised to help them than you are.

This shall be one of the most metal weeks of my life, in that I am seeing two of my bucket-list, must-see-before-I-die bands perform this week — Tool and Iron Maiden. I am quite excited.

I am also excited that October is right around the corner. This is my favorite month of the year. Autumn is my favorite season, and I am a big believer in pumpkin everything, soup, hoodies, apple picking, and all the suits and trappings of Fall. Also, Halloween time is the only part of the year that I can really shop for clothing or housewares.

Hospices may be a little less excited though, as Oct. 1 the U.S. Centers for Medicare & Medicaid Services (CMS) 2027 final hospice rule kicks in. This year, in addition to a 2.3% pay increase that doesn’t keep up with inflation or fuel costs, providers have some challenging new regulatory requirements to implement.

One big one is that hospice will have to provide an addendum to the election statement to each patient upon enrollment. Previously, CMS required providers to furnish these documents only upon request.

The addendum indicates what treatments and services the hospice will cover and which are considered “unrelated.” The requirement is part of CMS’ recent obsession with reducing non-hospice spending for enrolled patients. This is a real problem, but hospices generally are not the ones causing it. Other health care organizations are the ones who submit those claims. The hospice may not even know that the patient received services elsewhere.

The new addendum requirement, in my opinion, will put undue burden on providers, cause confusion for patients and families, and do little to curb non-hospice spending. CMS should not have mandated this.

Adding to the pressure is a Service and Spending Variation Index (SSVI) that critics say relies on a flawed methodology, potentially penalizing legitimate providers for non-hospice claims over which they have neither visibility nor control.

Providers also have no opportunity to review or correct the underlying SSVI data before it is made public, raising questions about the index’s effectiveness as a tool for program integrity.

The impetus behind this mistake is, again, reducing non-hospice spending, an issue which hospices cannot solve on their own regardless of what CMS tells them to do. If CMS wants to reduce that spending, they will have to look elsewhere in the healthcare system.

What do you think about these new requirements? How is your hospice preparing to implement them?

Notable quotes about death and dying from the two bands I’m seeing:

“This body holding me reminds me of my own mortality. Embrace this moment. Remember. We are eternal. All this pain is an illusion.” — Tool

“When my time has come to die, I will laugh and set me free. Upon my deathbed I will pray to the gods and angels say, ‘Now I’m safe and my soul’s set free. Hallowed be thy name.’” — Iron Maiden

Fun story: Years ago I did this wilderness survival training class at a camp in central Michigan. One of the things I had to do was build a shelter out of natural materials I found in my environment and sleep in it overnight.

“Sleep” may be a bit of an exaggeration. The lean-to thing I built was sturdy and effective but not very comfortable. I made it from downed branches, stones and moss. It had a small entrance hatch and a little hole at my feet for drainage in case it rained.

So, while I was lying awake in this contraption, I heard a rustling. I looked down, and I saw a face. At first, I didn’t recognize the animal that was wriggling its way into my tiny hutch, partly because its fur was so white.

I thought it might be a rabbit initially, but when it got its head through, I saw no long ears. Then I thought it might be a weasel or something. It wasn’t until it got in all the way — and its tail emerged — that I realized that I was looking at an albino skunk.

It started crawling up my legs.

I want to emphasize here that I did not freak out. I am, at least outwardly, a pretty calm bloke.

When the beast reached my lap, it actually curled up and went to sleep. I guess I was the warm thing in the forest that night. I decided my best course of action was to remain very, very still until it left, which was a little uncomfortable. But it worked. I did not get bitten, clawed, or sprayed. When it woke up, the skunk simply crawled up over my chest and tramped out through my little entrance.

Ultimately, this was a pretty cool experience. But it bears saying that a lot of people don’t like skunks. Why? Because they stink. You know what else stinks? That many people struggle to get access to hospice, home care or home health. (I am going to focus on hospice here, but this applies to virtually all home-based care.)

This was a consistent theme on Tuesday when about 160 hospice and healthcare leaders visited Capitol Hill with the National Alliance for Care at Home — protect and foster greater access to care.

Hospice “deserts” have always existed, particularly (though not exclusively) in rural areas. Many regions do not have enough quality providers to serve the population’s needs, largely due to distance, workforce constraints, economics and other factors.

To address this inequity, hospices need to grow. They must increase capacity and expand into new markets. However, recent regulatory actions threaten their ability to do so, according to the hospice executives I met in Washington, D.C., chief among them is the U.S. Centers for Medicare and Medicaid Services’ (CMS) six-month moratoria on hospice and home health enrollment in Medicare.

The moratoria hamper access to quality hospice care. This was a key message that hospices and home health providers brought to members of Congress this week.

Let’s take a brief look at the home health side of the equation. Through the third quarter of 2025, 38% of Medicare beneficiaries referred for home health care at hospital discharge did not receive those services, according to the Alliance. The gap was even wider among rural beneficiaries.

Compared with beneficiaries who received home health care, those who did not had a 36% higher 90-day mortality rate, a 33% higher hospital readmission rate and approximately 8% higher Medicare spending during the same period.

Home-based care providers could be reaching more of these patients — and reducing hospitalization costs — if the moratoria were not stymying growth.

Providers, for example, cannot expand into underserved areas through de novo operations. The moratoria have also prevented hospice and home health agencies from pursuing affiliations with health systems.

The effects could extend to hospice providers that have invested heavily in inpatient units, including facilities financed in part through community donations. If those units cannot operate, hospices could be left with unused facilities and no patients to serve, while employees hired to staff the units could face job losses.

Similarly, hospices that have invested in renovating unused wings of skilled nursing facilities to expand inpatient capacity may be unable to begin serving patients while continuing to incur substantial monthly lease costs, adding to their financial pressures.

These were some of the messages I heard on the Hill.

Hospice providers urged congressional lawmakers to call on CMS to let the moratoria expire as scheduled in November. The agency has the ability to extend them, which is something stakeholders wish to prevent. CMS had pledged to notify the public of their decision regarding an extension 60 days in advance of the expiration date. That mark passed on Sept. 14. Hospice News will keep our eyes out for the agency’s word on this.

Home-based care leaders advocated for a more targeted, data-driven approach to rooting out criminal enterprises in the hospice space. After all, we still need to deal with the fraud, which itself threatens access to quality care. A new, targeted methodology by CMS could include regional moratoria in markets that are most affected.

This is the gist of a bill that Rep. Beth Van Duyne called the Protecting Seniors and Stopping Fraudsters Act.

Among the bill’s goals is to build systems to identify bad actors earlier, particularly in geographic fraud hotspots like California, Nevada, Arizona and Texas. It would also focus regulatory action on providers with aberrant billing, discharge, enrollment, or low-quality reporting patterns rather than imposing blanket burdens across the industry, the statement indicated.

If enacted, the bill would increase survey frequency for hospices and home health agencies that are newly enrolled in Medicare, providers with ownership changes or those displaying signs of fraudulent behavior. It would also enhance screening requirements for providers considered to be at “extreme risk” of fraud, including fingerprinting administrators and medical directors and requiring proof of liability insurance.

The legislation would also take steps to improve accountability for accreditation organizations by requiring standardized survey training. It would also mandate notification requirements to alert seniors when they have been enrolled in hospice with instructions on how to disenroll if fraud or abuse occurs.

This bill was a frequent topic of conversation during the D.C. visit. Hospice and home health providers want this legislation passed. I personally endorsed the bill here on Inside Hospice back when Van Duyne introduced it in May.

Congressional staffers and lawmakers on both the House and the Senate sides appeared receptive to the hospice and home health providers concerns about the moratoria. They asked insightful questions, and a few acknowledged that the future of health care is in the home.

Lots of other issues were on the table in Washington, many adhering to the theme of access to care. Look for further coverage in Hospice News and some more analysis here in the coming days.

How about you? What do you want to see from Congress in its forthcoming “lame duck” session or post-midterms?

I am off to Washington, D.C., today to visit Capitol Hill with a group of hospice leaders and the National Alliance for Care at Home. This is part of the Alliance’s annual advocacy week event.

One of the things I plan to ask about on the Hill is the Palliative Care and Hospice Education and Training Act (PCHETA).

PCHETA is designed to bolster the hospice and palliative care field’s shrinking workforce through stronger federal support of staff training, education and awareness, as well as enhanced research. If enacted, the latest iteration of the legislation would help to establish more hospice and palliative care internships, clinical fellowships and interdisciplinary training opportunities, among other things.

Lawmakers have introduced the legislation several times, but it has not passed. Most recently, Sens. Tammy Baldwin (D-Wisc.) and Shelley Moore Capito (R-W.Va.) resurrected PCHETA in 2025. Reps. Earl “Buddy” Carter (R-Ga.) and Dr. Ami Bera (D-Calif.) brought forth a companion bill in the House around that same time.

Note, looking at the sponsors’ affiliations, that the bill has bipartisan support.

If enacted, the legislation would support hospice and palliative care training programs for nurses, physicians, pharmacists, social workers and chaplains. The bill would also expand continuing education and career development programs and incentives in these fields.

Among its goals is to generate healthcare cost savings through reduced hospitalizations that would presumably come with increased access to hospice and palliative care. It also includes provisions that emphasize family caregiver engagement and education around the services included in hospice and palliative care delivery.

Also note I said “most recently” a few paragraphs ago. To me, few bills better illustrate the distance between bipartisan agreement, common-sense policy and congressional action.

By my count, PCHETA has been introduced in eight different Congresses, beginning in 2012 and continuing through the current 119th Congress. There have been at least 14 individual bills in the Senate and House.

These are a handful of the questions I plan to ask in D.C.:

• What do you hope the bill would achieve, if enacted?

• Are there plans to revive PCHETA?

• What are the obstacles to getting it passed?

• What are the “tailwinds” behind the bill?

I have a few others, but these will form the “gist” of the conversation.

This is an essential bill to address a crushing problem that affects hospice providers’ sustainability and patients’ access to care. We need to see this become law. Hospice and palliative care providers need relief, and the burgeoning senior population needs care.

Of course, I also plan to discuss hospice program integrity and related legislation. Stay tuned for more on Hospice News.

By the way, I also posted a note on this asking how the staffing shortage has affected your organizations. Please respond there or drop a comment here to let me know what you think.

I am not a big video game player, but I recently bought a new system. My daughters, who live in different states now, play together online, and I thought I would join them.

However, I just can’t figure out the game they play, Fortnite. I get “killed” by other online players before I can get my bearings or do anything. But I will keep at it.

We had a big story on Hospice News yesterday. The U.S. Centers for Medicare & Medicaid Services (CMS) will be changing the 2027 hospice payment rates for all four levels of care due to a technical error in calculating the wage index.

This could have a big ripple effect on hospices that have already done revenue projections and strategic planning for next year. They will need to reexamine and recalculate those numbers and plans, and the amount of time they will have to do this is unclear. CMS has not issued the updated rates yet, and they are set for an Oct. 1 implementation.

CMS noted on its website that would change the rates, but the agency issued no press release or widespread announcement. So many providers may be unaware. Also, your vendors may not know about this, particularly those that help with billing, software and electronic medical records. Hospices need to have conversations with those companies to ensure they are aware of what’s coming and can adjust their own 2027 projections and systems.

In my 26 years of covering health care, this is the first time I can recall such an error taking place. Other sources have told me similar things. CMS can make corrections without publishing a new proposed rule, so hopefully that will expedite the process of making things right.

One would hope that the result of this would be payments going up, as rates have not kept up with inflation, fuel or other rising costs. But right now, we just don’t know what the agency will do. The rates could potentially go down. It will likely vary from market to market.

At this late stage of the game, hospices will have to roll with this punch. How is your organization going to prepare? Please drop a comment.

I hope everybody enjoys the forthcoming Labor Day holiday. We are supposed to go camping with friends, but it might be canceled. I wait in Limbo.

I recently had the pleasure of interviewing for Hospice News Denis Fleming, Jr., the newly appointed chief government affairs officer for the National Alliance for Care at Home. We had a great conversation about some of the pressing regulatory issues facing hospices today, like provisions of the 2027 final rule or the current moratoria on Medicare enrollment.

However, due to length I wasn’t able to squeeze the whole interview in. So here, as a supplement, are Denis’ additional comments on the Alliance’s legislative priorities. Denis refers to some specific legislation and regulatory actions. Check out the linked Hospice News and Home Health Care News stories for additional context.

What are the most important issues the alliance is tracking on the legislative front?

In my 14 years, I’m not sure that I have seen as much interest legislatively in home health and hospice, and I think that’s evidenced on a bipartisan basis.

We saw a letter on home-based care from 14 Senate Democrats, although you can see there’s interest on a bipartisan basis to enhancing the hospice benefit, addressing program integrity, but trying to see it greatly improved.

That letter that was signed by 14 Democrats spoke specifically about how they’re looking for more innovative ideas to improve care in the home, improve the Medicare benefit for care in the home, which includes hospice, and improve [home- and community-based services (HCBS)].

Are there specific bills you are watching?

We’ve got the [Rep Beth Van Dyne (R-Texas) bill. We’ve got the [Sens. Susan Collins (R-Maine) and Marsha Blackburn (R-Tenn.)] bill on the home health side. There’s been the Hospice Cares Act.

We’re working on developing a work stream to try to improve the hospice benefit and try to make sure we have stability in the payment rate, address the [Service & Spending Variation Index (SSVI)] and the moratoria.

We’ve seen support on both sides of the aisle, both chambers and in both committees of jurisdiction for protection and enhancement of the hospice benefit.

And I would mention as an additional point that we certainly oppose any carve-in of the hospice benefit into Medicare Advantage. We are fortunate to not see any indications of that, but we always want to be alert to that.

Back to Jim

So that’s what the Alliance is thinking about at the legislative front. I actually endorsed Rep. Van Duyne’s bill, designed to instill more targeted approaches to hospice fraud.

What are your thoughts on some of these issues? Do you support more targeted efforts to fight fraud, as opposed to national actions like moratoria?

I may go a little overboard when it comes to art.

My three-bedroom apartment has 113 art pieces on the walls, stacks of books, and lots of little sculptures or pottery.

We acquired some new art pieces recently, and this past weekend it was time to hang them. It required moving a lot of things around. The photo above is one the new paintings, by U.S. artist Jay Bonadio.

Art illuminates life. It can educate and inspire us, help us to feel, and better understand our experience as we move through this glorious but painful Earth. And it got me thinking. In what ways does art address the specter or experience of death? What about hospice care?

My little light bulb went off, and it occurred to me that this would be something to write about. After some ponderation, I decided to start with movie recommendations that deal with hospice, palliative care and the end of life.

I initially thought about doing books on these subjects, but I have so many I don’t know where to start. Maybe I will tackle that in the future. I will probably have to break them down into categories like nonfiction, fiction and graphic novels. We’ll see.

So here, in no particular order, are my quick reviews of several films that address end of life issues and hospice. This is not a power ranking, nor is it an exhaustive list. These are just a few that have had an impact on me.

End Game

End Game is a powerful and emotional documentary directed by Rob Epstein and Jeffrey Friedman. The film focuses on patients who are nearing death and the doctors, nurses, families and caregivers who support them. Set in hospitals and hospice facilities in San Francisco, the documentary explores difficult questions about death, dignity and the meaning of a good life.

One of the strongest aspects of End Game is its honest portrayal of the emotional challenges surrounding death. Rather than treating death only as a medical problem, the film shows the importance of listening to patients and respecting their wishes. The personal stories make the documentary deeply moving and encourage viewers to think about how society approaches end-of-life care.

The movie reminds viewers that even when a person cannot be cured, they can still receive care, comfort and respect.

I would also encourage you to check out the documentary Extremis, which deals with similar subject matter through the eyes of clinicians.

His Three Daughters

His Three Daughters is an emotional family drama directed by Azazel Jacobs. The film follows three sisters — Katie, Rachel, and Christina — who come together in their father’s New York apartment as he approaches the end of his life and enters hospice. Although they share the same father, the sisters have very different personalities, beliefs and relationships with him.

One of the strongest parts of the film is the acting. Natasha Lyonne, Elizabeth Olsen and Carrie Coon give powerful performances and make the sisters’ arguments and emotional struggles feel realistic. Their conflicts show how family members can carry years of anger, jealousy, guilt, and unresolved feelings.

The film is also effective because it focuses on ordinary family moments rather than dramatic events. The sisters argue about their father’s care, their childhood, and their different choices in life. As the story develops, they begin to understand each other better and recognize the importance of their family connection.

The Elephant in the Room

This 2020 drama directed by Allen R. Freeman focuses on a hospital-based palliative-care team caring for terminally ill patients. Senior Reporter Holly Vossel wrote about the film on Hospice News back when it came out.

The story centers on nurse practitioner Michael Lafata and his relationship with a terminally ill cancer patient, Cooper Davis. The film is based on the book “Resilient Hearts: It’s All About the Journey,” by Bonnie Freeman, herself a supportive care nurse practitioner.

The Elephant in the Room is an emotional drama that explores death, compassion, friendship and the importance of finding hope during difficult moments. One of the strongest parts of the movie is its message about end-of-life care. The film shows that patients can still experience laughter, friendship, love and dignity during their final days, while simultaneously illustrating the pain, suffering and grief that we all experience during such times.

One of the things that struck me in the film was that it depicted a goals-of-care conversation as the patient began to accept his terminal diagnosis. It also followed the clinicians’ own emotional journeys as the person they are caring for approaches death.

Griefwalker

Griefwalker is a powerful documentary that explores grief, death and the process of facing loss. The film follows Stephen Jenkinson, a Canadian teacher and writer who works with people experiencing grief. Rather than presenting grief as something that should quickly be overcome, the documentary encourages viewers to understand grief as a natural and meaningful part of life.

One of the most interesting aspects of Griefwalker is its message that death and grief should not be avoided. Jenkinson challenges the idea that people should simply “move on” after losing someone. Instead, he suggests that grief can teach us to appreciate our relationships and understand the value of the people we love.

Overall, Griefwalker is a deep and thought-provoking documentary about accepting death and honoring the people we lose. It shows that grief is not something that needs to be fixed but an experience that can change how we understand love, life and relationships.

The Nurse with the Purple Hair

The Nurse with the Purple Hair is an inspiring and emotional film that highlights the important role nurses play in caring for patients and their families. The story shows that nursing is about much more than medical treatment. It requires compassion, patience, communication and the ability to support people during some of the most difficult moments of their lives.

One of the most memorable aspects of the film is the nurse herself. Her purple hair makes her stand out, but it also represents her individuality and willingness to connect with patients in a personal way. She demonstrates that a healthcare professional can be both professional and compassionate while still being herself.

The film also shows the emotional challenges nurses face in caring for sick or dying patients and how stressful and heartbreaking that can be. Healthcare workers are human too.

Among the film’s messages is that kindness and human connection are just as important as medical care at the end of life.

I hope some of you will check these films out and enjoy them. If you have seen them, I would love to hear your thoughts. Also, do you have any movies in this vein that you would recommend?

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.