International Journal of Cardiology xxx (xxxx) xxx

Contents lists available at ScienceDirect

International Journal of Cardiology

journal homepage: www.elsevier.com/locate/ijcard

Unmet needs in end-of-life care for heart failure patients

Filippo Quattrone a, Alberto Aimo a, b, *, Sara Zuccarino c, Maria Sole Morelli d, Paolo Morfino a,
Angela Gioia e, Claudio Passino a, c, Francesca Ferrè a, c, Sabina Nuti a, c, Michele Emdin a, b
a
Interdisciplinary Center for Health Sciences, Scuola Superiore Sant’Anna, Pisa, Italy
b
Cardiology Division, Fondazione Toscana Gabriele Monasterio, Pisa, Italy
c
Management and Healthcare Laboratory, Institute of Management and Department EMbeDS, Scuola Superiore Sant’Anna, Pisa, Italy
d
Bioinformatica Traslazionale e e-Health, Fondazione Toscana Gabriele Monasterio, Pisa, Italy
e
Hospice, UF Cure Palliative, Azienda USL Toscana Nord Ovest, Pisa, Italy

A R T I C L E I N F O A B S T R A C T

Keywords: Objective: To investigate end-of-life (EoL) care for heart failure (HF) in Tuscany (Italy) from healthcare pro­
End-of-life fessionals’ perspective and identify areas for intervention.
Care Methods: All the directors of Cardiology units (n = 29) and palliative care (PC) units (n = 14) in Tuscany were
Palliative care
surveyed on the practices of EoL care.
Heart failure
Cardiology
Results: Forty-five percent of cardiologists reported that their hospital had some EoL care services for HF patients.
cancer However, 75% did not have a multidisciplinary team providing EoL care for HF patients. Sixty-four percent
stated that <25% of patients who might benefit from PC did receive it, and 18% stated that no patient received
PC. For most of PC specialists, HF patients accounted for <25% of their patients. PC specialists believed that
patients with cancer diseases were much more likely to receive PC than HF patients at EoL, and 36% judged that
almost no HF patients were timely referred to hospice care. The majority of PC specialists reported that almost no
HF patient prepared advance healthcare directives, as opposite to 57% for cancer patients, suggesting poor
understanding or acceptance of their terminal condition.
Conclusions: The management of HF patients in the EoL stage in Tuscany is often suboptimal. EoL care should be
implemented to ensure an adequate quality of life to these patients.

1. Introduction symptom control, care satisfaction, physical symptom control, hospi­

Heart failure (HF) is a prevalent, long-term condition with an esti­
mated prevalence of 1–2% of adults in developed nations, and 12% in
subjects aged ≥60 years [1]. This prevalence has risen particularly in the
population aged 85 years and older, and is expected to further increase
over the next decades [2,3]. The 5-year survival rate of HF patients is
around 50–60%, then lower than age-matched individuals from the
general population, and even lower than the rate of survival of some
cancers [4]. HF patients may experience frequent episodes of decom­
pensation requiring hospitalization, but they may also recover to their
previous level of functioning [5]. Identifying patients needing palliative
care (PC) interventions is then more challenging in HF than in cancer.
Nonetheless, PC interventions have a positive impact on HF patients and
their caregivers. Specifically, these interventions were found to improve
various domains, including overall and HF-specific quality of life,
talization rates, medical utilization, and caregiver burden. Furthermore,
hospital and community-based PC interventions can be cost-effective
compared to usual care primarily by reducing the need for hospital
admissions [6]. Major cardiovascular societies recommend access to PC
in advanced HF [7,8], but referral rates for HF patients are significantly
lower than in cancer, and referral to PC is often late [3]. Barriers to PC
and hospice care in the advanced HF population include HF uncertain
prognosis and disease course, historical patterns of care and current
organization of health services, inadequate staff training, lack of clear
communication from healthcare providers, doctors’ understanding of
roles, and caregiver inexperience with HF-specific EoL issues [2,3,9,10].
Tuscany is an Italian region with about 3.8 million inhabitants, with
a mostly public regional healthcare system considered one of the best
performing regional health systems, and well-developed palliative care
services [11]. Previous studies, however, highlighted geographic

* Corresponding author at: Interdisciplinary Center for Health Sciences, Scuola Superiore Sant’Anna, and Cardiology Division, Fondazione Toscana Gabriele
Monasterio, Piazza Martiri della Libertà 33, Pisa 56124, Italy.
E-mail addresses: a.aimo@santannapisa.it, aimoalb@ftgm.it (A. Aimo).

https://doi.org/10.1016/j.ijcard.2024.131750
Received 29 August 2023; Received in revised form 22 December 2023; Accepted 2 January 2024
Available online 11 January 2024
0167-5273/© 2024 Elsevier B.V. All rights reserved.

Please cite this article as: Filippo Quattrone et al., International Journal of Cardiology, https://doi.org/10.1016/j.ijcard.2024.131750
F. Quattrone et al.
variations in EoL care for oncologic patients [12] and differences in
quality of EoL care between cancer and non-cancer patients [13] [14]. In
2022, 10,18% of patients dying with HF received home- or hospice-
based palliative care in the Region [15]. This study aimed to explore
the perspectives and practices of clinicians in Tuscany regarding EoL
care for HF patients and identify potential areas for intervention.
2. Methods
2.1. Questionnaire development
A multidisciplinary team of cardiologists, PC specialists, health
management experts developed one questionnaire for cardiologists and
another one for PC specialists. The questionnaires shared the general
architecture and some questions, and were divided into the following
sections:
A - Services and procedures for the management of HF patients in the
EoL phase;
B - Patient needs as perceived by healthcare professionals and
whether these needs were met;
C - Patient preferences about EoL care;
D - The role of the caregiver in EoL care;
E - The perspective of the cardiologist/ PC specialist on EoL care for
HF patients.
Questions were either closed or open-ended. The questionnaire for
cardiologists focused only on HF care and included 28 questions, while
the questionnaire for PC specialists was composed of 119 questions on
the care of both HF and cancer patients. An English translation is pro­
vided in the Supplemental material.
2.2. Targets of the survey
According to the last available information [12], Tuscany has 34
Cardiology units and 17 PC units across three Health Areas, 3 University
hospitals and one hospital devoted to cardiac disease only. PC units are
managed by the Health Areas and are divided into Simple and Complex
Functional Units, which assist advanced and terminal patients in three
different settings: home, hospice, and hospital. In 2019/20, 21 hospices
with a total of 159 beds were active in Tuscany [13]. In addition, Uni­
versity hospitals also have Pain Therapy Operating Units within them
dedicated to tertiary-level palliative care. As in Italy the “palliative
medicine and care” specialization has been created only in 2022, the PC
specialists involved in this survey have different backgrounds, including
anesthesia and reanimation, oncology, and geriatrics, with post-
specialization training and experience in palliative care.
We invited all the directors of Cardiology and PC units in Tuscany to
participate to the survey and collected their answers through Google
Forms. The questionnaire for cardiologists was administered between
October and December 2022, and the questionnaire for PC specialists
between February and March 2023. Respondents were asked to refer to
the period from 2021 onwards, when the main COVID-19 restrictions on
hospital and ambulatory activities had been lifted. The survey was
conducted as part of the NET 2016-CARE NET project together with the
Tuscany region. The study complied with the Helsinki declaration and
relevant national, regional, and institutional guidelines. Ethical com­
mittee approval was waived as the questionnaires did not include per­
sonal or sensitive data.
2.3. Data analysis
A descriptive data analysis was performed. Categorical variables
were presented as absolute numbers and percentages. Comments were
assessed through an inductive thematic analysis assessing the frequency
of the themes emerging.
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International Journal of Cardiology xxx (xxxx) xxx
3. Results
3.1. Respondents to the survey
We contacted all the 29 directors of the Cardiology units of the 3
areas of the Tuscany health system (North-West, n = 10; Center, n = 9;
South-East, n = 10), and all the 14 directors of PC units (North-West, n
= 8; Center, n = 2; South-East, n = 4). All of them participated to the
survey (Table 1). One Cardiology center had suspended its inpatient
activity during the COVID-19 pandemics; the director of this center
therefore answered only sections D and E of the questionnaire.
3.2. Services and procedures for patient management: cardiology
Thirteen cardiologists (45%) reported that their hospital had some
EoL care services for HF patients. Twenty-five percent had a multidis­
ciplinary team providing EoL care for HF patients; 17% had a set of
criteria to refer patients to EoL care, although only one cardiologist
reported using standardized scales to predict survival (Needs Assess­
ment Tool: Progressive Disease-Heart Failure, Integrated Palliative
Outcome Scale [IPOS], Supportive and PC Indicators Tool). Many car­
diologists (79%) could request a consult by PC specialists for inpatients,
but, according to 47%, this happened rarely. Established criteria for
referral to hospice were adopted by 46%. All the respondents could
activate home PC, but this occurred unfrequently for 45% (Fig. 1).
Finally, the treatments most often interrupted in the EoL setting were
inotropes (66%), mechanically assisted circulation (48%), defibrillation
(45%), and dialysis (41%).
3.3. Services and procedures for patient management: palliative care
Thirty-six percent of PC specialists reported the availability of pro­
cedures dedicated to PC for both oncologic and HF patients at referral
hospices, but only one specialist reported the presence of a specific
clinical procedure for HF patients. Most respondents (93%) reported an
active involvement in the evaluation of hospitalized patients with can­
cer, and only 14% reported the same level of engagement in the care of
HF patients. Similarly, 93% participated to the care of cancer patients
referred from general practitioners (GPs), while only 14% assisted HF
patients sent from GPs.
For most PC specialists (93%), HF patients accounted for <25% of
their patients. The majority of PC units employed validated scales to
predict patient survival (79%), but only 36% used specific scales for HF
(Karnofsky Performance Status Scale, Palliative Prognostic Score, Nec­
esidades Paliativas - NECPAL, IPOS).
3.4. End-of-life care needs: cardiology
Cardiologists were then asked how many HF patients dying in hos­
pital could have died at home. The answers were no one (10% of car­
diologists), <25% (34%), 25–50% (34%), 50–75% (17%), or even >75%
(7%). Patients who could have benefitted from PC were: no one (3%),
<25% (39%), 25–50% (25%), 50–75% (21%), >75% (7%), or all of
them (3%). Nonetheless, 64% of cardiologists stated that less than one in
Table 1
Respondents to the survey.
Area of the Tuscany Directors of Cardiology Directors of Palliative Care
health system units n (%) units n (%)
North-West 10 (34) 8 (57)
Center 9 (31) 2 (14)
South-East 10 (34) 4 (29)
Total 29 (100) 14 (100)
The table shows the two categories of respondents of the study and their
geographic distribution.
F. Quattrone et al.
Fig. 1. Main answers from cardiologists about end-of-life care for heart failure (HF).
four patients who might benefit from PC did receive it, and 18% stated
that no patient received PC. Additionally, 93% of cardiologists reported
that <50% of eligible patients had been referred to hospice care, and
45% reported that no patients were referred to hospice care (Fig. 2).
3.5. End-of-life care needs: palliative care
PC specialists reported a lower ability to satisfy the care needs of HF
patients compared to cancer patients (Likert 10-point scale: average
values 3.8 vs. 7.8). The main unmet need was appropriate information
on disease progression, followed by de-escalating HF therapy, psycho­
logical and social support, being able to meet patient preferences and
supporting caregivers. The answers return the impression that, contrary
to cancer patients, HF patients often did not understand or accept that
they had entered the terminal disease stage. Overall, PC specialists
believed that patients with cancer diseases were much more likely to
receive PC than HF patients (Fig. 3), and were referred much lately to
hospice care. In particular, 36% judged that almost no HF patients were
timely referred to hospice care, according to their clinical evaluation.
3.6. Patient preferences: cardiology
Forty-five percent of cardiologists reported that <25% of patients
dying from HF had discussed their EoL preferences during the last year
of life. In most cases (93%), patient preferences were discussed only
when HF entered its terminal stage (n = 27). Seventy-two percent of
cardiologists reported that none of the patients dying in their ward in the
last year prepared advance healthcare directives (AHDs) (to specify
what actions should be taken for their health if they are no longer able to
make decisions for themselves).
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International Journal of Cardiology xxx (xxxx) xxx
3.7. Patient preferences: palliative care
Seventy-one percent of PC specialists affirmed that almost no HF
patients referred to hospice care had discussed their preferences about
care (in terms of setting of care, pain management, or withdrawal of
therapy). By comparison, only 36% of PC specialists stated that almost
no cancer patients had discussed their preferences before hospice
admission. Seventy-nine percent of PC specialists reported that almost
no HF patient prepared AHDs before being admitted to hospice, as
opposite to 57% for cancer patients.
3.8. Caregiver role: cardiology
On average, cardiologists rated the burden of HF management on
caregivers as 7.9 out of 10, because of the need to perform nursing ac­
tivities, emotional and psychological problems, the need to coordinate
patient care, and bureaucratic issues.
3.9. Caregiver role: palliative care
PC specialists rated the burden of end-stage HF management on
caregivers as 8.1 out of 10, which is slightly higher than for cancer pa­
tients (7.7). According to PC specialists, important problems for care­
givers of HF patients are understanding the terminal status of the
disease, and acquiring nursing skills. Furthermore, psychological sup­
port to caregivers is considered not enough developed.
3.10. Global perspective on EoL care
Cardiologists most often complained of the difficulty of making pa­
tients and caregivers understand disease severity (66%). Other common
themes emerging are the lack of territorial services for EoL care (62%),
F. Quattrone et al.
Fig. 2. Discrepancy between the perceived need for end-of-life (EoL) care of heart failure (HF) and actual care provided.
Answers of cardiologists (n = 28) are reported in red (perceived need) or blue (care provided). Absolute numbers of answers are reported.
the lack of coordination with primary care (62%), the lack of experience
in treating end-stage patients (59%), the lack of specialized personnel
and a multidisciplinary team (55%), and the difficulty of making de­
cisions during the terminal stage (48%).
Similarly, according to PC specialists, the main limitations in caring
for HF patients at EoL are late referral to PC care (86%), poor acceptance
of the terminal status by the patient and/or caregivers (86%), limited
experience of other specialists (86%), difficult decision-making by pa­
tients at EoL (79%) and lack of specialized PC professionals and dedi­
cated multidisciplinary teams (64%).
Training of hospital personnel (93%), creating shared pathways be­
tween both organizations and personnel involved (86%), communica­
tion on PC to the public (86%), creating digital tools for information
sharing between primary care and hospitals (79%), training of primary
care personnel (79%), and creating and updating guidelines (79%), were
the most suggested steps to enhance EeOl care for HF patients, according
to PC specialists.
Seven percent of cardiologists reported that their institutions had
ongoing projects focused on EoL care. Conversely, 50% of PC specialists
had ongoing projects on EoL care, and 14% were trying to implement
programs for patients with non-cancer advanced diseases.
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International Journal of Cardiology xxx (xxxx) xxx
4. Discussion
We report that cardiologists working in the main hospitals from
Tuscany did not have an easy access to PC, and that the lack of dedicated
multidisciplinary teams or the unavailability of specific PC programs
represent great barriers to EoL care in HF. Patients with HF account for a
small percentage of patients receiving PC. When compared to patients
with cancer, subjects with HF are considered less likely to receive PC and
less aware of their end-stage disease. The results of the survey provide
valuable insights into the current state of EoL care for HF patients in
Tuscany and its in line with previous studies based on the use of
administrative studies to support regional policies by the Regional
Health Agency [16]. The identified needs and opportunities should be
used to guide future research and interventions to improve the quality of
care and patient outcomes. By addressing these needs, we could improve
the experiences of HF patients and their caregivers during the EoL stage
of the disease. This initiative aligns with the objectives of the Italian
Ministry of Health’s Decree n.77/2022 [14], which sets new structural
standards for the palliative care network, including an increase in PC
units and hospice beds. These standards are further integrated into the
Tuscany Regional Palliative Care Plan 2023–2026 which sets a target of
“≥ 25% of non-cancer patients in PC units out of the total number of
F. Quattrone et al.
Fig. 3. Adequacy of end-of-life care in cancer vs. heart failure (HF), according
to Palliative Care specialists (n = 14).
Answers of Palliative Care specialists (n = 14) are reported in green (if they
refer to cancer) or red (if they refer to HF). Absolute numbers of answers
are reported.
deceased patients followed by the units.” [17].
Overall, there seems to be a lack of an established care-service model
for HF patients. While almost half of the centers report having services
for EoL care in HF, a multidisciplinary unit was reported only by a
quarter of the directors of Cardiology units. The presence of care path­
ways involving Cardiology wards was reported by 36% of the directors
of PC. While generally possible, hospice referral for HF was reported to
be scarcely used by cardiologists and PC specialists. Multiple examples
of PC services for HF were proposed in the literature [5]. However, the
question of who is best placed to deliver these PC interventions remains
unclear. At the same time, it is primarily recognized that a collaborative
model of care is necessary for HF patients, and PC can be effectively
delivered without necessarily requiring direct input from PC clinicians if
adequately trained personnel is present [5].
PC is usually divided into two categories: generic and specialist PC
[6]. The generic PC approach is provided by all healthcare professionals
who have received basic training in PC and integrate PC principles into
routine patient care (HF specialist care aligned with the PC consultancy
model) [6,8]. On the other hand, specialist PC is delivered by a multi-
professional team whose core practice is PC and who have received
specialized training in this area. A specialist PC is necessary for patients
with complex needs or problems that persist despite receiving a generic
PC. Generic PC can be provided by usual care teams (cardiology, pri­
mary care, care of older adults) and supported by a specialist PC for
education, training, and clinical care if needed. In contrast, specialist PC
need PC services to assume responsibility for the patient’s and their
family’s primary care. HF specialists serve as consultants for specific
issues relating to the treatment of HF (HF-oriented PC services model).
The involvement of nurses [18,19] and other health professionals [20]
and preference for home-based and primary care-based models of PC
[21] is also essential to ensure the sustainability of PC for HF in the
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International Journal of Cardiology xxx (xxxx) xxx
present context of a limited specialist PC workforce [19,21].
The survey sections dedicated to the needs of patients highlighted
that cardiologists are aware of the unmet needs of their patients in the
EoL stage of the disease and of a low level of EoL quality for HF
compared to oncologic patients according to PC specialists. This
perception is confirmed by the lack of discussion with HF patients about
EoL care issues and their lateness in the clinical history of the disease
when this is done, as reported by cardiologists and PC specialists. Both
lack and lateness of discussion about EoL care were noticed in previous
findings on end-stage HF population [22,23]. As reported in the litera­
ture, difficulty in making patients understand the worsening of the
disease and predict its evolution hinder such communication [22].
Broader training for cardiologists in discussing bad news and increasing
the adoption of survival scales could help better address patient needs.
To ensure a timelier and more appropriate referral to PC, the adopted
survival scales should also include emerging HF-specific scoring systems
[24–26] to identify high-risk patients. These tools can complement the
generic instruments for assessing palliative needs already reported by
some responders. The use of advanced care planning (ACP) is limited in
both cardiology and PC settings for HF patients, confirming previous
findings [6,23], even if it is known that HF patients can indicate their
preferences regarding life-sustaining treatments [23].
When treated in PC, no difference in access to palliative treatments
appear between HF and oncologic patients: this is in line with evidence
showing that these two populations, when in an advanced stage, have
similar needs for PC, e.g., symptom burden, depression, and spiritual
well-being [27].
The perception of the burden of the impact of HF EoL on caregivers is
similar between cardiologists and PC specialists and is generally high.
Notably, it is very similar to the burden for oncologic patients, showing
that it is a problem only partially addressed independently from the
disease. Caregivers, when there, are a hidden lay PC workforce who
should be engaged in comprehensive models of care tailored to HF and
sustained in the PC process, capturing their needs as co-providers and
co-recipients of care, including support for bereavement [28–31].
The need for further training in HF EoL care for cardiologists and PC
specialists emerged as a limit and an area of improvement in both
populations. The need for better-integrated care and shared paths, also
involving primary care, and the creation of multidisciplinary teams are
other points of improvement that emerged from both categories of re­
spondents. PC specialists also highlighted the need for guidelines on this
subject and interventions for educating the population on EoL care. The
latter element might contribute to the lack of perception of HF as a life-
threatening disease, which is reported as one of the barriers to EoL care
for HF patients both by cardiologists and PC specialists.
A strength of the study is that of involving both directors of cardi­
ology and PC units (in charge of hospice, hospital and home-based PC),
which gives a global view of EoL care for HF from the main healthcare
providers involved in caring for end-stage HF patients.
The survey results have important implications for future research
and actions in EoL care tailored to HF patients. The study highlightes the
need to exchange competencies between PC specialists and cardiologists
regarding clinical management of HF patients in EoL and communica­
tion of disease progression. Additionally, there is a need to design an
integrated model of care for HF patients that involves interdisciplinary
teams at hospital and shared procedures between hospital and territorial
care. The survey results can inform dissemination events and build
collaboration between cardiologists and PC specialists to share good
practices and design this optimal patient management model. The
ongoing reform of primary care in Italy, that foresees the home setting as
the first place of care and promotes a new figure of family and com­
munity care nurse, can be an opportunity to implement such an orga­
nizational model [32].
Studies using real-world evidence and randomized control trials are
necessary to assess the feasibility and impact of health service models on
the quality of EoL care for HF patients. However, recruiting patients
F. Quattrone et al.
with advanced HF can be challenging, also considering that a shared
definition of end-stage HF is still missing [7,33]. These trials should use
quality indicators from administrative data and qualitative analysis of
perceptions of healthcare workers, patients, and their caregivers,
including patient-reported and carer-reported measures [2,34,35].
Considering the issue of scarcity of resources and the sustainability of
EoL care in the study design is crucial. Evidence is emerging that high-
quality EoL care can be cost-effective in terms of hospitalizations and
access to ICU [5]. Further studies on this topic are warranted.
With respect to study limitations, the responses reflect the subjective
opinions of the individuals who answered the questions and may not
necessarily reflect objective data on the provision of EoL care. However,
they provide insight into the perceived adequacy of EoL care within the
given regional healthcare setting. Furthermore, the results of the study
are poorly generalizable because they derive from a small sample size
and from a single medium-size region of Italy.In conclusion, the man­
agement of HF patients in the EoL stage is often suboptimal even in
settings such as Tuscany, where PC services are well established and
extensive scientific research have been conducted in the area of PC for
non-oncologic patients. The pathways of EoL care should be imple­
mented - with specific design tailored to the needs of HF patients, and
involving all formal and informal actors involved - to ensure patients an
adequate quality of life in the EoL stage.
Funding
None.
CRediT authorship contribution statement
Filippo Quattrone: Writing – original draft, Formal analysis, Data
curation, Conceptualization. Alberto Aimo: Writing – original draft,
Conceptualization. Sara Zuccarino: Writing – original draft. Maria Sole
Morelli: Data curation. Paolo Morfino: Data curation. Angela Gioia:
Writing – review & editing. Claudio Passino: Writing – review &
editing. Francesca Ferrè: Writing – review & editing. Sabina Nuti:
Writing – review & editing. Michele Emdin: Writing – review & editing,
Conceptualization.
Declaration of competing interest
None.
Data availability
The data underlying this article will be shared on reasonable request
to the corresponding author.
Acknowledgments
We are grateful to the participants to the survey.
Appendix A. Supplementary data
Supplementary data to this article can be found online at https://doi.
org/10.1016/j.ijcard.2024.131750.
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