Where Hospice Fails Us: A Qualitative Study of Facilitators and Barriers in Transitions to Hospice According to Palliative Care Clinicians

Abstract

Background:

Transitions to hospice are challenging for patients, caregivers, and health care teams, yet few studies have examined gaps in care from the perspectives of referring palliative care (PC) clinicians.

Objectives:

To identify facilitators and barriers in hospice transitions described by PC clinicians.

Design:

Qualitative study using semi-structured interviews focused on hospice transitions.

Setting/Subjects:

Ten referring PC clinicians (physicians, advanced practice providers, and a social worker) at a large academic health center.

Measurements:

Interviews were transcribed and analyzed using thematic content analysis.

Results:

Clinicians emphasized the value of hospice and the Medicare benefit, while identifying barriers to hospice transitions. Challenges included inadequate caregiving support, limited reimbursement, uncertainty around eligibility and prognostication, and differences between for-profit and non-profit hospice agencies. These barriers contributed to inequitable access to hospice and gaps in care.

Conclusions:

PC clinicians identify substantial barriers to hospice transitions, underscoring the need to improve access to comprehensive end-of-life care.

Keywords

clinicians hospice palliative care qualitative study

Key Message

According to palliative care clinicians, patients and families face significant barriers when transitioning to hospice care. Addressing barriers and strengthening facilitators is critical for allowing patients to access comprehensive care at end of life.

Introduction

Hospice use continues to increase in the United States with 1.8 million eligible beneficiaries in 2024.¹ Despite this growth, transitions to hospice remain challenging for patients, caregivers, and health care teams. Previous studies have explored gaps in care from patient and caregiver perspectives, identifying challenges around preparing the home, having in-home caregiving, accessing transportation, and understanding hospice services.^2–5 Other work has explored health care worker perspectives, including hospice admissions staff and care coordinators, highlighting barriers such as low hospice literacy, medication changes, and inadequate handoffs.^6,7 Additional studies have focused on provider perspectives, specifically discussing barriers to palliative care (PC) referral.⁸

Few studies have directly examined transitions to hospice from the perspective of PC clinicians, who are uniquely positioned due to their training and frequent involvement in hospice referral and coordination. Prior research exploring perspectives of hospice experts were conducted in 1999.⁹ More recent studies have included PC clinicians only as a small subset focused on long-term care facilities.¹⁰ To address this gap, we conducted a qualitative study of PC clinicians within the Duke University Health System to explore facilitators and barriers to hospice transitions and identify opportunities to better support patients and families at the end of life.

Methods

Study design and recruitment

We conducted a qualitative study using semi-structured interviews. Twelve PC clinicians (physicians, nurse practitioners, physician assistants, and social workers) were identified through the Duke University Medical Center website and invited via e-mail. Ten clinicians consented and participated. The study was approved by the Duke University Health System Institutional Review Board.

Interviews

The interview guide included three sections:¹ description of a recent hospice transition,² description of a particularly challenging transition, and³ general reflections on hospice, including the Medicare hospice benefit, the evolving hospice industry, end-of-life care at home, and underserved patient populations. Interviews were conducted over Zoom by a trained interviewer (M.M.N.) in private settings and continued until thematic saturation was reached.

Qualitative analysis

Interviews were audio-recorded, transcribed, and analyzed using NVivo 14. Two authors (M.M.N. and J.G.C.) individually reviewed transcripts for themes using a thematic content analysis approach. Themes were inductively developed and refined, and discrepancies resolved through discussion until consensus was reached.

Results

Ten PC clinicians participated and had a mean age of 47.5 ± 12.4. Most participants were physicians (70%), white (80%), female (60%), and non-Hispanic (100%) (Table 1). Four major domains emerged: barriers within hospice transitions, underserved patient populations, variability of for-profit and non-profit hospice agencies, and facilitators to hospice.

Table 1.

Demographic Data

Demographic variable	No. (%)^a
Age in years, mean ± SD (range)	47.5 ± 12.4 (31–70)
Sex
Male	4 (40)
Female	6 (60)
Race
White	8 (80)
Other	2 (20)
Ethnicity
Hispanic	0 (0)
Non-Hispanic	10 (100)
Clinical Background
MD/DO	7 (70)
NP/PA	2 (20)
Social Work	1 (10)
Years worked in health care, mean ± SD (range)	22.9 ± 10.8 (5–41)
Years practiced within palliative care, mean ± SD (range)	11.3 ± 11.3 (2–25)
Role
Hospice care	0 (0)
Non-hospice palliative care	10 (100)
Both hospice care and non-hospice palliative care	0 (0)

With the exception of age, years worked in health care, and years practiced within palliative care.

Barriers to hospice

Clinicians identified four primary barriers: lack of caregiving support, where to provide hospice care, inadequate communication, and structural limitations of the Medicare Hospice Benefit (Table 2). All clinicians described caregiving support as a major limitation, since families are expected to provide extensive daily care. Uncertainty about whether hospice care could be safely delivered at home complicated transitions. Delays in communication between patients, primary teams, and hospice agencies can further prevent timely transitions. Structural barriers, including limited reimbursement and uncertainty about prognostication and eligibility, also contributed to delays in hospice services.

Table 2.

Barriers to Hospice

Theme	Subtheme	Examples of theme
Lack of Caregiving Support	Lack of Caregivers	“Any human who lacks built-in caregivers, the hospice benefit can’t make it work on 6 or 7 hours a week of support when there is 168 hours in a week”
	Cost of Extra Care	“We want to keep people out of the hospital, but we do not provide what they need on the back end. They just need maybe a nursing assistant for 8 hours a day, but we don’t have the ability to provide that or we bankrupt families because of the huge cost”
	Caregiving Burden	“We’re asking patients and families to set up basically a day hospital in their dining room… potentially drop out of the workforce, and do nothing but med administration, turns, bathing, and toileting. And while there can be some help with nurse aids, or with RNs… 164 hours a week, it’s on the family”
Where to Provide Hospice Care	When Hospice Cannot Be Delivered Safely at Home	“There are so many preconceived notions about what home with hospice looks like that don’t apply to the population at large, because we do take care of many patients who don’t have a safe home environment and the only way we can actually get them hospice care, because they don’t meet inpatient criteria, would be routine, home care. But it’s an unsafe environment to go home and get end-of-life care in and on top of that, thinking about the hospice agency, it’s not a safe environment to send a hospice group into…”
	Access and Variability	“There’s a saying within palliative care that I’ve heard, which is, if you see one hospice do one thing once, you’ve seen one hospice do one thing once. In terms of what a care plan can include, what would be covered under the hospice benefit, what would be not included under the hospice benefit”
	Access and Variability	“I have had many good experiences of patients on for-profit hospice. I have also had many complicated experiences with patients on for-profit hospice. I would say, the place where it feels the most different is in crisis management… It’s not because the nurses aren’t awesome at 2 o’clock in the morning and trying to manage that crisis. It’s because they literally don’t… have a way in to get the inpatient care that they need without activating an emergency room”
	Staffing Shortages	“The nursing shortages have just been very difficult. They have a large inpatient unit, but it had to close down half of the beds, because they simply didn’t have nursing staff, and hospice is a space where you can’t just bring in traveling nurses. They have to be consistent. They have to be comfortable with hospice care, with giving medications appropriately to control symptoms”
Inadequate Communication	Poor Communication	“We also have specialists who were involved, who were… recommending hospice but didn’t necessarily have the tools to be able to have these conversations or transitions seamlessly”
	Goals Do Not Align with Hospice	“I think the challenges are that most often most people don’t like every aspect of hospice in the sense of the goal. I think oftentimes people end up there, because there’s really no other good option, but many people still want therapy”
	Delays in Care	“His symptoms were not well-controlled in the home environment and because of the nursing shortages, as an outcome of Covid, the patient could not be expeditiously transitioned to the inpatient hospice unit… The wife was fairly traumatized by that experience, and seeing him suffering”
Structural Limitations of the Medicare Hospice Benefit	Limited Funding and Reimbursement	“It’s the low daily reimbursement and the high cost of individual aspects of care. I think that’s what limits access to antibiotics, to enteral and parenteral nutrition, to transfusion support, to dialysis, and to some select oral cancer directed therapies that may provide a symptomatic benefit… It’s really hard, especially if you’re a small, free-standing hospice to be able to keep your books balanced and stay in business if patient’s care is that expensive”
Structural Limitations of the Medicare Hospice Benefit	Eligibility Criteria and Prognostication	“Referrers don’t know when a patient actually qualifies… And if the referrers wait until patients clearly qualify for hospice, oftentimes they clearly qualify because they’re dying and then you have hospice for four days and nobody gets any benefit”

Patient populations with diagnosis-specific barriers to hospice enrollment

Clinicians identified several patient populations with diagnosis-specific barriers to hospice enrollment, including patients with end-stage renal disease, hematological malignancies, heart failure, COPD, dementia, ventilator dependence, stroke, and complex social and behavioral health needs (Table 3). Hospice enrollment often requires patients to forego treatments that are not covered by the Medicare hospice per-diem reimbursement structure. Provider hesitancy delayed referrals for patients with heart failure, COPD, and dementia. Finally, patients with high care needs, including those on ventilators or with prior strokes, were disproportionately impacted by inadequate caregiving support, particularly when there were comorbid psychosocial challenges.

Table 3.

Patient Populations with Diagnosis-Specific Barriers to Hospice Enrollment Population

Population	Example quotations
End-Stage Renal Disease	“I’d begrudge a hospice agency none for not offering something that would financially devastate their entire practice if they were to offer it to one patient or a set of patients. Just for a sense of scale, you know, a dialysis center contracting with a hospice may charge four figures to do a single dialysis run, which is potentially eight patients per diem on one aspect of one person’s care. There’s just no way to keep a practice afloat, if you do it that way”
Hematological Malignancies	“In liquid tumor, a lot of hospices won’t provide blood products and I think both the patients and the oncologists get really comfortable that when the number is off, you respond with a transfusion of some sort. And a lot of the progressive hospices will provide two units of packed red cells a week in response to anemia. Because, you know, you’re treating fatigue, you’re treating breathlessness. These are symptoms”
Heart Failure and COPD	“Chronic lung diseases, in general, and heart disease, in general, tend to be referred to hospice later… Or they’ll stay on hospice services for a long period of time and then get kicked off… It’s just hard to know, which exacerbation of their COPD or their heart failure is going to be the one that they don’t recover from”
Dementia	“Patients with dementia have a harder time qualifying for hospice services… The strict criteria for qualifying for hospice when you have dementia is based off of the FAST scale… which basically means you’re speaking less than six intelligible words, you’re incontinent of your bowels and bladder, you can’t hold your head up. It’s very, very advanced dementia… Well before that stage of dementia, people are doing poorly… Even if your goals are consistent with a comfort-based approach, even if you want to receive care at home, die at home in a comfort-oriented fashion, it may be hard to qualify for hospice unless you are extremely advanced…”
Patients on Ventilators	“She was on a trach that was attached to a vent, and the problem became, how do you discharge her with the right level of support? Because this person, in particular, kept saying, ‘I want to be able to get home. That’s my goal.’”
Stroke	“There are a whole contingency of patients who fall into this gap where they qualify for hospice, but because of circumstances with regard to their medical condition or lack of caregiver, there’s really no place for them to go, particularly patients who have a new disability and don’t have a caregiver. This comes up often in stroke patients”
Complex Social and Behavioral Health Needs	“I think hospice sometimes magnifies sociodemographic barriers… If you’ve got a functional family with money, they can hire help, right. They can sleep at night… If you’ve got someone who lives alone because they’re personality disordered and uses cocaine, there’s not enough support in the hospice benefit to keep that person in a safe way, if they don’t have a community, friend, or family member who will come”

Variability of for-profit and non-profit agencies

Clinicians expressed mixed views on for-profit and non-profit agencies. Some reported poor experiences with for-profit hospices, particularly given the lack of associated inpatient hospice units, requiring reliance on hospitals or contracted facilities to provide inpatient level of care. On the contrary, some clinicians recognized that for-profit agencies were able to enroll patients with more expensive treatments given more financial flexibility.

Facilitators to hospice

Despite barriers, clinicians identified several facilitators that support successful transitions to hospice, including resources available through hospice, financial support of the Medicare hospice benefit, and effective communication (Table 4). Hospice was described as providing the most care at home, given access to the equipment, medications, multidisciplinary team, 24/7 nurse on-call, bereavement counseling, and respite care. Furthermore, the fact that these services are covered by the Medicare hospice benefit provides immense relief for patients and families at end of life. Clinicians also recognized that the best transitions to hospice involve effective communication between providers, patients, and families.

Table 4.

Facilitators to Hospice

Theme	Subtheme	Examples of theme
Resources Available through Hospice	Inpatient Hospice Unit	“If they have their own hospice, their own 24-hour, RN-staffed, GIP capable hospice facility, they’re more likely to meet the needs of every patient comprehensively than ones that don’t”
	Inpatient Hospice Unit	“I typically will only refer to hospices with inpatient units, so that it’s a smoother transition if people need to go from the house to an inpatient unit for uncontrolled pain, for IV medications, for that sort of thing”
	Access to Equipment and Medications	“They’ll cover medications. They’ll cover equipment. They’ll cover supplies. It’s the most personnel, with the most frequency that comes to the home… Do I think it’s enough for the reality of what it means to take care of a patient at the end of life? No. I mean, I think we are asking just way too much of family members. But if I compare it to a home health benefit, for example, it’s a lot more than home health”
	Multidisciplinary Team	“In terms of what you could get from any home care, electing hospice gives you the most care…You won’t get a larger team than what you get with hospice, because you get multiple disciplines… Once you sign on… they’re going to have care until the end of their life. Unlike home health, who just comes in and signs off after a few PT sessions, hospice is with you for the duration”
	24/7 Nurse	“The most important thing is a nurse on call 24 hours a day, 7 days a week, an experienced hospice nurse who can help with symptom management and make a visit in the middle of the night if needed. That’s a service that’s unique to hospice that doesn’t require getting an ambulance going to the hospital”
	Bereavement	“One of the things that I’m always worried about when patients are here in the hospital, and if they pass while they’re on a comfort plan, but they’re not on an official hospice, they are not automatically referred to those bereavement services”
	Respite	“They cover respite care so when a family member just needs a break, the patient will be cared for”
Financial Support of the Medicare Hospice Benefit	Covered by Medicare	“They will have medications, equipment, skilled care, basically, all the things that are covered helps. I think they feel more well supported at the hardest time in their lives. It makes it a much less hard conversation to have to say this public payer source has got you. Patients and families understandably have a great deal of enthusiasm to hear that there won’t be financial ramifications to that choice”
Financial Support of the Medicare Hospice Benefit	Flexible Eligibility Criteria	“I think the Medicare hospice benefit, its biggest pro is that it’s nimble in that whatever hospices want to do for 191 dollars a day for the first 60 days, or 145 dollars a day for the next 60 days, they can do… I think the lack of prescriptiveness at the front end is both a blessing and a curse”
Effective Communication	Teamwork within Palliative Care Team	“We have a very tight team… We have our [local hospice agency] liaison who meets with us in our daily huddle. A lot of the cases where I think somebody is approaching the need for inpatient hospice, we discuss the case ahead of time… She will put it on her radar and already be chart reviewing, and then when it’s more obvious… The patient meets criteria. Very quickly, she engages family, and it moves pretty fast”
	Communication between Teams	“The patient just wanted to go home and was about to go AMA… We were able to calm the situation down… to be able to get the resources in the room and see the radiation oncology team come together, the ICU team came together, case management worked together, and then getting the agency and the family all on the same page. That requires quite a bit of orchestration and communication”
	Goals of Care Conversations	“A lot of my counseling about the transition is to double and triple check that it’s actually a good fit for their goals, values, and preferences. And so, they know what to expect, because it can be really hard if we just use the label of hospice, and we don’t do great hospice education upstream”
	Positive Perception of Hospice	“A family or a patient’s prior experience of hospice is highly predictive of where it fits into their life… If patients and families have had really good experiences that have a lot of positive emotion and they felt supported, and they felt like it was the right care, I think they’re more likely as a family unit to see the benefit and use hospice again… It’s fascinating because you can actually see generations long impact from positive or negative hospice experiences”
	Education about Hospice	“Every clinician needs to know about who qualifies for hospice, what hospice at home looks like, what the levels of care for hospice are, so that they’re able to adequately provide education to their patients about this and manage expectations”

Discussion

This study identifies key barriers and facilitators to hospice transitions from the perspective of PC clinicians. While clinicians highlighted how hospice and the Medicare benefit provide essential services, critical barriers remain, including lack of caregiving support, uncertainty about care location, and inadequate communication. Structural barriers, including limited reimbursement and uncertainty around eligibility and prognostication, shape which patient populations can benefit from hospice care. Furthermore, variability between for-profit and non-profit hospices both expand options and introduce inconsistency of care.

Clinicians consistently identified lack of caregiving support as a major barrier to hospice care. End-of-life care often requires multiple caregivers, yet families face limitations due to work obligations, physical demands on older spouses, and financial constraints. These findings align with prior literature documenting the reliance on extensive unpaid care.^11–13 Caregiving also carries emotional and physical burdens, as caregivers perform personal care needs or administer complex medications. Inadequate caregiving support often raises questions about hospice care location. Although clinicians may feel pressure to discharge patients to home hospice, insufficient caregiving or unsafe home environments can make this impossible. When home hospice is not feasible, patients then fall into a gap without Medicaid or the personal finances to pay for long-term care facilities, highlighting the need for policy-level solutions.

Even when hospice care is feasible, services vary widely. Certain geographic areas, particularly in rural regions, have limited access.¹⁴ Agencies differ in services offered, financial structures, and clinical expertise.¹⁵ Staffing shortages, worsened by the Covid-19 pandemic, further exacerbated these disparities, in some cases requiring hospice agencies to decrease capacity. The tax status of agencies also adds to the variability, with clinicians expressing mixed perspectives on for-profit hospices. Some described for-profit agencies offering inferior care, consistent with prior evidence of poorer caregiving experiences with for-profit hospices.¹⁶ Other clinicians recognized greater flexibility with more concurrent care options, such as dialysis, tube feeds, and ventilator support. Overall, clinicians emphasized the importance of inpatient hospice units for managing escalating care needs, which in the state of North Carolina are only offered by non-profit agencies.

These barriers disproportionately impact certain patient populations. Lack of concurrent care deters patients with end-stage renal disease, hematological malignancies, and heart failure from hospice enrollment. Costly treatments associated with these diagnoses are not reimbursed by hospice, even when they may provide symptomatic relief that aligns with a palliative philosophy. In some cases, the decision to transition to hospice means patients must be willing to limit lifespan for comfort care.¹⁷ Patients with high caregiving needs, including those with strokes, ventilator dependence, or complex social and behavioral health needs, remain underserved. Finally, limited goals of care conversations and prognostic uncertainty delay hospice referral for patients with COPD, heart failure, or dementia, even when their goals align with a comfort-based approach.

Poor communication between patients, families, and providers further complicates transitions, and often results in unrealistic expectations and mistrust. This unclear communication may be due to a lack of clinician education about hospice and its capabilities. Similar to prior studies, clinicians emphasized the importance of assessing patient knowledge of hospice and ensuring their goals align before initiating the transition in care.^18,19 Despite these barriers, clinicians recognized that hospice provides the most care at home regardless of patient insurance status, given resources and coverage through the Medicare hospice benefit. Effective communication and early goals of care discussions allow for improved transitions to hospice.²⁰ Thus, clinicians must be educated about hospice so that they can establish realistic expectations, address misconceptions, and support successful transitions.

Our study has several important limitations. First, our sample size was small with 10 PC clinicians. We also interviewed clinicians who practiced at a single health system in North Carolina. Other institutions or states may have different resources and structures supporting patients on hospice care. As a result, patients in other contexts may face unique facilitators and barriers, and clinicians may have different experiences with hospice agencies. Future work should include broader interdisciplinary perspectives, including hospice clinicians, nurses, and chaplains. Improving hospice transitions will require interventions at both policy and practice levels. Policy reforms that better align reimbursement structures with patient needs, including expanded access to concurrent care models, may reduce barriers for patients receiving ongoing disease-directed therapies. From a clinical perspective, earlier goals-of-care conversations, improved prognostic tools, and greater clinician education about hospice may support more timely and effective transitions.

Authors’ Contributions

Study conception and design: M.M.N., K.W.H., and T.W.L. Material preparation, data collection, and analysis: M.M.N., J.G.C., and T.W.L. Original draft and article revision: All authors.

Ethical Considerations and Consent to Participate

This study was approved by the Duke University Health System Institutional Review Board (Pro00112873). All participants provided written consent prior to participation in the study.

Data Availability Statement

De-identified data supporting the findings of this study are available from the corresponding author upon reasonable request.

Footnotes

Acknowledgments

The authors are thankful to the clinicians who took the time to participate in the research.

Author Disclosure Statement

Researchers declare the following conflicts of interest: T.W.L. reports personal fees for consulting or advisory boards from AbbVie, Agios/Servier, AstraZeneca, Astellas, BMS/Celgene Genentech, GSK, Gilead, Lilly, Novartis, Pfizer, Seattle Genetics, and ThymeCare; royalties from UpToDate; equity interest in DosenTrx and ThymeCare; speakers bureau fees from Agios/Servier, AbbVie, BMS/Celgene, Daiichi-Sankyo, Incyte, Kura, Rigel, and Syndax; grants and/or research contracts from the American Cancer Society, AstraZeneca, BMS, Jazz Pharmaceuticals, the NINR/NIH, and Seattle Genetics.

Funding Information

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. TWL is a Scholar in Clinical Research of Blood Cancer United (formerly known as the Leukemia & Lymphoma Society).

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