JOURNAL OF PALLIATIVE MEDICINE

Volume 21, Number 3, 2018

ª Mary Ann Liebert, Inc.
DOI: 10.1089/jpm.2017.0125

Symptom Relief and Palliative Care during the Last Week

of Life among Patients with Heart Failure:
A National Register Study

Kristofer Årestedt, RN, PhD,1,2 Anette Alvariza, CNS, PhD,3,4 Kurt Boman, MD, PhD,5,6
Joakim Öhlén, RN, PhD,7 Ida Goliath, RN, PhD,8 Cecilia Håkanson, RN, PhD,3,9
Carl Johan Fürst, MD, PhD,10 and Margareta Brännström, RNT, PhD11
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Abstract
Background: Heart failure is a disease with high morbidity, mortality, and physical and psychological burden.
More knowledge about the care provided for patients with heart failure close to death is needed.
Objective: The aim was to describe key aspects of palliative care during the last week of life in patients with
heart failure, as reported by healthcare professionals.
Design: This is a national register study.
Setting/Subjects: The study included 3981 patients with diagnosed heart failure as the underlying cause of death.
Measurements: Data were obtained from the Swedish Register of Palliative Care, a national quality register that
focuses on patients’ last week of life, independent of diagnosis or care setting. The register includes information
about care interventions connected with key aspects of palliative care. Data are reported retrospectively by a
nurse or physician at the healthcare unit where the patient dies.
Results: Only 4.2% of patients with heart failure received specialized palliative care. In their last week of life,
symptom prevalence was high, validated scales were seldom used, and symptoms were unsatisfactorily relieved.
Around one-fifth (17%) of the patients in the study died alone. Less than half of family members had been
offered bereavement support (45%). Moreover, one-third (28%) of the patients and more than half (61%) of the
family members were reported to have had end-of-life discussions with a physician during the illness trajectory.
Conclusion: The results indicate inadequate palliative care for patients with heart failure during their last week
of life.

Keywords: end-of-life care; heart failure; palliative care; registry study; symptom

Introduction able decline toward end of life and death.2 Patients living
with advanced heart failure experience a variation of symp-

H eart failure is a disease with high morbidity and

mortality and with great physical and psychological
burden.1 Heart failure undisputedly leads to poor prognosis
with a fluctuating disease trajectory and an often unpredict-
toms such as shortness of breath, pain, fatigue, and psycho-
logical distress that influence their daily lives. Existential
distress and fear are also common.2–4 A recent study found
that patients with heart failure report a similar and even

1
Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden.
2
Department of Medical and Health Sciences, Linköping University, Linköping, Sweden.
3
Department of Health Care Sciences and Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden.
4
Capio Palliative Care, Dalens Hospital, Stockholm, Sweden.
5
Research Unit, Medicine-Geriatric, Skellefteå, Sweden.
6
Institution of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden.
7
Centre for Person-Centred Care and Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg,
Gothenburg, Sweden.
8
Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
9
Department of Nursing Science, Sophiahemmet University, Stockholm, Sweden.
10
The Institute for Palliative Care, Lund University and Region Skåne, Lund, Sweden.
11
Department of Nursing, Umeå University, Campus Skellefteå, Skellefteå, Sweden.
Accepted September 13, 2017.

361
 362
higher symptom burden than patients with cancer.5 During
the last six months of life, the symptom burden steadily in-
creases,6 and despite intensified levels of care, patients’
quality of life often worsens.7
There is strong evidence that palliative care at all points in
the illness trajectory clearly benefits heart failure patients.8
Palliative care has proved to improve a range of outcomes,
such as symptom burden, quality of life, existential and
spiritual concerns, and patient satisfaction.9,10 A compre-
hensive and interdisciplinary approach can, and should, be
integrated into patient care and disease management from
diagnosis and throughout the illness trajectory.11,12 However,
patients with heart failure still have inequitable access to
palliative care, and only a few of those who would benefit
from it actually receive it.11,13
Palliative care includes a holistic view pertaining to mul-
tidimensional needs with the goal to improve quality of life for
both patients and their families. According to the definition by
the WHO, symptom management (e.g., symptom assessment,
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treatment, and relief) is a key aspect of palliative care, irre-
spective of diagnosis. Further key aspects of importance are,
for example, communication and family support.14
There is a lack of evidence regarding these important key
aspects, and more knowledge about the care provided for
patients with heart failure close to death is needed. Therefore,
this study aimed to describe key aspects of palliative care
during the last week of life in patients with heart failure, as
reported by healthcare professionals.
Methods
Study context
Irrespective of diagnosis, palliative care in Sweden follows
the three levels established by the European Association for
Palliative Care. The first level is a nonspecialist setting with
occasional treatment, the second level consists of general pal-
liative care provided by healthcare professionals more fre-
quently involved in palliative care, but not as their main focus,
and the third level consists of specialist palliative care.15,16
Design and sample
This register study is based on the Swedish Register of
Palliative Care (http://palliativ.se). In addition, the Swedish
Causes of Death Certificate Register (the Swedish National
Board of Health and Welfare), which covers all deaths, was
used to identify patients with verified heart failure as the un-
derlying cause of death, classified according to the English
version of the International Statistical Classification of Dis-
eases and Related Health Problems (ICD-10), reported by
physicians. The Swedish Register of Palliative Care is a na-
tional quality register that focuses on the last week of life in-
dependent of diagnosis and care setting. The register is based
on the British Geriatric Society’s principles of what constitutes
a good death, and the intent was to cover important aspects of
the care delivered during the last week of life with the goal to
improve quality of care for all dying people.17,18 The register
comprises an end-of-life questionnaire, including information
about care interventions connected with key aspects of pallia-
tive care. Healthcare providers, that is, the responsible nurse
and/or physician at the healthcare unit, complete the ques-
tionnaire as soon as the patient has died. They also report if the
ÅRESTEDT ET AL.
deaths were expected or not. For patients who die at home, data
are reported by healthcare providers in primary or home care.
The Swedish Register of Palliative Care covered 53% and 62%
of all deaths in 2011 and 2012, respectively, as not all health-
care units in Sweden report to the register.
Criteria for inclusion were heart failure as the underlying
cause of death (ICD-10; I50.0, I50.1, and I50.9), 18 years of
age and older, and expected death as reported by healthcare
providers. According to the death certificate register in Swe-
den, a total of 7734 patients died from heart failure during the
period January 1, 2011, to December 31, 2012. Of these, 3981
were also identified in the Swedish Register of Palliative Care
and were therefore included in the study, representing 51.5%
of all deaths caused by heart failure during these two years.
The study complies with the principles outlined in the
Declaration of Helsinki (Br Med J 1964; ii: 177) and has been
approved by the Regional Ethical Review Board in Umeå,
Sweden (No. 08-027M/2012-451-32M).
Study variables
Background variables included age, sex, place of death,
and number of days enrolled in the care unit. Place of death
and type of setting were categorized into general home care,
specialized palliative home care, nursing home (short and
long-term facility), hospital ward, hospice/inpatient pallia-
tive care, and other. Number of days enrolled was categorized
into 0–3, 4–14, 15–30, 31–365, and more than 365 days.
The study variables included symptom presence and
symptom relief (pain, nausea, shortness of breath, rattles [i.e.,
respiratory secretion], anxiety, and confusion), assessments
of pain and other symptoms using validated patient and/or
clinician-reported scales (e.g., Visual Analog Scale, Numeric
Rating Scale, and Abbey Pain Scale), and injection pre-
scribed to be taken when required (PRN, pro re nata) for
symptom relief (pain, nausea, rattles, and anxiety), as well as
consultation of external expertise for symptom relief. Vari-
ables also reflected circumstances surrounding the death:
having someone present at the time of death, the patient’s
preferred place of death being met, and bereavement support
for family members. Variables concerning end-of-life dis-
cussions with patients and family members were also in-
cluded, but not limited to the last week of life. Each symptom
was reported as not present, totally relieved, partly relieved,
not relieved at all, and unknown. The other variables were
reported in categories of yes, no, or unknown. These vari-
ables are only included in the register if death is expected.
Data analysis
Descriptive statistics were used to describe quality of
palliative care during the last week of life. Independent
sample t-test was used to investigate age differences between
men and women. The level of statistical significance was set
at p < 0.05. Data were analyzed with Stata 14.2 (StataCorp
LP, College Station, TX).
Results
Sample
The final sample consisted of 3981 patients with heart
failure, 2488 (62.5%) women and 1493 (37.5%) men. Mean
age was 88.1 (standard deviation [SD] = 7.1) years, with women
 PALLIATIVE CARE IN HEART FAILURE 363

being significantly older compared with men, 89.2 (SD = 6.6) Table 2. Symptom Prevalence and Symptom Relief
and 86.2 (SD = 7.5) years, respectively [t(3979) = 13.25, during the Last Week of Life (n = 3981)
p < 0.001]. Unspecified heart failure (I50.9) was the most
common cause of death (96.0%). Most of the patients died in Patients
All with
nursing homes, with 59.5% dying in a long-term facility. In patients, symptoms,
addition, deaths in hospital wards were common (21.5%). n (%) n (%)
Only 4.2% received specialized palliative care. A majority
of the patients had been enrolled for 31 days or more at the Pain
place of death (68.1%), while some (9.0%) had received care No 1279 (32.1)
for very few days (0–3 days) (Table 1). Yes, but totally relieved 1852 (46.5) 1852 (74.8)
Yes, partly relieved 620 (15.6) 620 (25.2)
Yes, not relieved at all 5 (0.1) 5 (0.2)
Presence of symptoms, symptom relief, Unknown 225 (5.7)
assessments, and consultation Shortness of breath
The most frequently reported symptom in the last week No 2599 (65.3)
of life was pain (62.2%), followed by rattles (51.1%), anxiety Yes, but totally relieved 451 (11.3) 451 (38.7)
Yes, partly relieved 689 (17.3) 689 (59.2)
(39.0%), shortness of breath (29.2%), confusion (24.9%), and Yes, not relieved at all 24 (0.6) 24 (2.1)
nausea (11.2%). The number of reported ‘‘don’t know’’ varied Unknown 218 (5.5)
between 2.6% (rattles) and 15.0% (confusion) (Table 2).
Anxiety
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Among patients with these symptoms, symptom relief was No 1931 (48.5)
most prominent for pain. Still, 25.4% of the patients were Yes, but totally relieved 958 (24.1) 958 (61.7)
only partly relieved from symptoms or not relieved at all. Yes, partly relieved 584 (14.7) 584 (37.6)
Symptom relief was also high for patients with anxiety, with Yes, not relieved at all 11 (0.3) 11 (0.7)
61.7% being totally relieved. More than half of the patients Unknown 497 (12.5)
with shortness of breath, nausea, and rattles were only partly Nausea
relieved or not relieved at all, 61.3%, 54.9%, and 55.2%, No 3076 (77.3)
respectively. The poorest symptom relief was shown for Yes, but totally relieved 201 (5.1) 201 (45.1)
patients with confusion; only 14.5% were totally relieved, Yes, partly relieved 224 (5.6) 224 (50.2)
while 27.3% were not relieved at all (Table 2). Yes, not relieved at all 21 (0.5) 21 (4.7)
Validated scales were seldom used to assess symptoms in Unknown 459 (11.5)
the last week of life. Pain was more often assessed (12.4%) Rattles (respiratory secretion)
than other symptoms (7.6%). Individual PRN prescriptions No 1843 (46.3)
Yes, but totally relieved 912 (22.9) 912 (44.8)
Yes, partly relieved 1075 (27.0) 1075 (52.8)
Table 1. Background Characteristics (n = 3981) Yes, not relieved at all 49 (1.2) 49 (2.4)
Age, years, mean (SD) 88.1 (7.1) Unknown 102 (2.6)
Age categories, n (%) Confusion
18–49 4 (0.1) No 2393 (60.1)
50–79 412 (10.4) Yes, but totally relieved 144 (3.6) 144 (14.5)
‡80 3565 (89.6) Yes, partly relieved 578 (14.5) 578 (58.2)
Sex, n (%) Yes, not relieved at all 271 (6.8) 271 (27.3)
Women 2488 (62.5) Unknown 595 (15.0)
Men 1493 (37.5)
Type of HF (ICD-10), n (%)
Congestive HF (I50.0) 10 (0.3) for symptom relief through injection were common for pain
Left ventricular HF (I50.1) 149 (3.7) (86.7%), anxiety (74.8%), and rattles (81.3%). Individual
Unspecified HF (I50.9) 3822 (96.0) prescriptions for nausea were less common (46.7%). External
Place of death and type of setting, n (%) expertise for symptom relief was consulted for 11.7% of the
General home care 234 (5.9) patients (Table 3).
Specialized palliative home care 77 (1.9)
Nursing home, short-term facility 340 (8.5) End-of-life discussions, circumstances
Nursing home, long-term facility 2370 (59.5) surrounding the death,
Hospital ward 855 (21.5)
Hospice/inpatient palliative care 93 (2.3) and bereavement support
Other 12 (0.3) In total, 28.2% of the patients with heart failure were re-
Number of days enrolled in the care unit, n (%) ported to have had an end-of-life discussion with a physician
0–3 359 (9.0) during the illness trajectory. A larger proportion of family
4–14 574 (14.4) members than patients were reported to have had an end-of-
15–30 338 (8.5) life discussion (60.6%). Information about end-of-life dis-
31–365 853 (21.4) cussions was reported as unknown for 15% of the patients and
>365 1857 (46.7)
9.4% of family members (Table 4).
HF, heart failure; ICD-10, International Statistical Classification Around one-fifth of the patients (17.2%) died alone,
of Diseases and Related Health Problems; SD, standard deviation. without family members or healthcare professionals present.
 364 ÅRESTEDT ET AL.

Table 3. Symptom Assessment and Treatment Table 4. End-of-Life Discussions, Circumstances

during the Last Week of Life (n = 3981) Surrounding the Death, and Bereavement
Support (n = 3981)
All patients,
n (%) All patients,
n (%)
Pain assessment with validated scales
Yes 494 (12.4) End-of-life discussions with patients
No 3234 (81.4) Yes 1123 (28.2)
Unknown 253 (6.4) No 2257 (56.7)
Symptom assessments with validated Unknown 601 (15.1)
scales other than pain End-of-life discussions with family members
Yes 302 (7.6) Yes 2411 (60.6)
No 3334 (83.8) No 1156 (29.0)
Unknown 345 (8.7) Unknown 375 (9.4)
Individual PRN prescription administered No family members reported 39 (1.0)
through injection Someone present at the time of death
Pain (opioids) No 686 (17.2)
Yes 3451 (86.7) Healthcare professionals 1307 (32.9)
No 489 (12.3) Family members 1117 (28.1)
Unknown 41 (1.0) Healthcare professionals and family 794 (19.9)
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Anxiety members
Yes 2976 (74.8) Unknown 77 (1.9)
No 937 (23.5) Patient’s preferred place of death was met, n (%)
Unknown 68 (1.7) Yes 1911 (48.0)
Nausea No 97 (2.4)
Yes 1860 (46.7) Unknown 1973 (49.6)
No 2015 (50.6) Bereavement support, n (%)
Unknown 106 (2.7) Yes 1776 (44.6)
Rattles No 1295 (32.5)
Yes 3236 (81.3) Unknown 871 (21.9)
No 696 (17.5)
Unknown 49 (1.2)
Consultation of external expertise Our results contribute to the body of knowledge concern-
for symptom relief ing the prevalence of symptoms in patients with heart failure.
Yes 464 (11.7)
Xu et al. have shown that patients with heart failure report
No 3383 (85.0)
Unknown 134 (3.4) higher symptom severity, for example, concerning pain,
shortness of breath, and anxiety, than patients with cancer
PRN = pro re nata, that is, medication prescribed to be taken when and amyotrophic lateral sclerosis (ALS).19 Other studies have
required. confirmed that patients with heart failure report a similar
symptom burden to patients with malignant diseases at the
Family members were present at the time of death for 48.0% end of life.20,21
of the patients, with or without healthcare professionals. For The most common symptom during the last week of life
the rest of the patients, healthcare professionals were present was pain. Although pain is not usually considered to be a
(32.9%). Information about someone’s presence at the time symptom of heart failure, it is often prevalent and a major
of death was reported as unknown for 1.9% of the patients. problem for patients at the end of life.21,22 In a recently
The patients’ preferred place of death was reported as being published study, family members reported that patients in
met in 48.0% and unmet in 2.4%. However, 49.6% were residential care homes received inadequate symptom relief of
reported as unknown (Table 4). pain and breathlessness during their last days of life.23 Pre-
Bereavement support for family members was reported to valence of anxiety or shortness of breath was also common in
have been offered in 44.6% of all deaths, 32.5% had not been the present study. In concordance with our results, pain,
offered bereavement support, and 21.9% was reported as anxiety, shortness of breath, and confusion have often been
unknown (Table 4). described in the literature as symptoms experienced by pa-
tients with heart failure.24 Besides the symptoms described in
Discussion
the present study, the literature has reported fatigue, de-
To our knowledge, this is the first study describing key pression, anorexia, and sleep disorder as being frequently
aspects of palliative care in terms of symptom management, prevalent, often as a combination.19,20,24
communication, and family support during the last week of Validated scales to assess pain and other symptoms were
life in patients with heart failure. Remarkably, only 4.2% re- seldom used, which could be explained by patients being in
ceived specialized palliative care. Most importantly, symptom their last week of life and therefore unable to complete self-
prevalence was high, validated scales were seldom used, and ratings. However, there are alternatives, such as proxy rat-
symptoms were unsatisfactorily relieved. Moreover, two- ings25 and behavioral or observational symptom scales.26
thirds of the patients and almost half of the family members did Importantly, symptom assessment could be used as a trigger
not have end-of-life discussions with a physician. Around one- to identify patients in need of palliative care earlier in the
fifth of the 3981 patients in the study died alone. illness trajectory.5
 PALLIATIVE CARE IN HEART FAILURE 365

An important finding is that less than one-third of the pa-
tients were reported to have had an end-of-life discussion
with a physician during the illness trajectory. One possible
reason is that predicting death is difficult in heart failure.11,27
It has previously also been suggested that healthcare pro-
fessionals caring for patients with advanced life-limiting
illnesses such as heart failure often avoid discussing end-of-
life issues or withhold information despite believing that
patients and caregivers should be told the truth.28 Conse-
quently, patients with heart failure often have a limited un-
derstanding of the seriousness of their condition.29,30 A
recent longitudinal study showed that many patients lack
sufficient knowledge about their condition and prognosis,
particularly end-of-life issues, and many expressed a wish for
an open discussion. Their communication with physicians
predominantly focused on curative treatment.31
In the present study, many patients and family members
did not receive an end-of-life discussion with a physician
despite that death was expected. Previous studies have shown
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provided by heart failure practitioners, but not labeled pal-
liative care.46 Barriers for integration such as lack of com-
petence and resources have also been identified.47 In a
consensus statement based on another recent review of Eu-
ropean guidelines and pathways, it was, however, illustrated
that there is a growing awareness of integrated palliative care
in patients with heart failure.48 This review concluded that
palliative interventions should focus on relief of suffering
through provision of appropriate medication and psycho-
logical support. Assessments of physical, psychological, so-
cial, and spiritual issues should have a holistic approach.
Furthermore, recommendations were made for discussions
about illness prognosis and limitations.
Methodological Considerations
The present study has some methodological limitations
that need to be considered. The Swedish Register of Palliative
Care does not cover all deaths and therefore the results are

based on only half of the patients who died from heart failure
that healthcare professionals are hesitant to have such con-
in Sweden during the study period. Recall bias cannot be
versations, for example, according to an unpredictable dis-
excluded as the end-of-life questionnaire is completed ret-
ease trajectory or unclear accountability between healthcare
rospectively. Related to this, the questionnaire is completed
professions.32,33 At the same time, a recent review shows that
by healthcare professionals, not the patients themselves.
heart failure patients and their caregivers lack communica-
Furthermore, the Swedish Register of Palliative Care covers
tion on prognosis and end-of-life care.34 Being informed
all types of death and therefore specific variables of impor-
about one’s impending death is important for the patient and
tance in heart failure are not reported. For example, only six
family members because it enables informed choices, for
predefined symptoms are included, which implies that other
example, about the place for care and death and about ful-
symptoms of potential importance, such as fatigue, are not
filling life projects, relationships, planning for funerals, and
reported. The key aspects of palliative care in the present
other practical matters.35 It should be recognized that end-of-
study are only reported if death is expected. Therefore, it was
life discussions with heart failure patients and their family
not possible to include patients dying an unexpected death.
members may need to take an approach where active treat-
As heart failure has an unpredictable trajectory, there is a risk
ment is continued while, at the same time, the possibility of
that these patients may have been misclassified as an ex-
death is acknowledged.36
pected or unexpected death. However, as this decision is
Around one-fifth of the 3981 patients included in this study
made retrospectively and only covers the last week of life, the
died alone, without family members or healthcare professionals
risk is probably limited. An important strength is that the end-
being present. Compared with a study by Brännström et al.,37
of-life questionnaire has been continually validated.17,18
this was at a similar level as for patients with heart diseases in
general (20%), but significantly higher compared with patients
Future Directions
with cancer (11%). In contrast to Brännström et al., our study
included only expected deaths, which could indicate time to As this study is based on retrospective data reported by
prepare for death. This makes our results surprisingly high. healthcare providers, future research needs to be com-
Patients and family members have described the importance of plemented by patient-reported data. This will give opportu-
having a family member of their preference present at the time nities to provide an even more comprehensive understanding
of death.38,39 Healthcare professionals have also described not of palliative care during the final week of life.
dying alone as being important.40,41
Our results support the need for palliative care in patients Conclusion
with end-stage heart failure. It is already well known that
The present study contributes to the understanding of key
patients with heart failure face challenges such as pain and
aspects of palliative care in terms of symptom management,
symptom management, preparing for death, and the need for
communication, and family support for patients with heart
communication, trust, and confidence in healthcare profes-
failure close to death. Remarkably, only 4.2% received spe-
sionals.42 These challenges may be met by the competencies
cialized palliative care. We also identified insufficient symp-
of palliative care. In fact, it has been shown that palliative
tom management lacking end-of-life discussions as well as
care consultation in heart failure patients reduces symptom
bereavement support. In addition, a significant number of pa-
burden, including pain and depression, and hence improves
tients died alone. These results indicate inadequate palliative
quality of life.43–45 A Swedish study has shown that inte-
care for patients with heart failure during their last week of life.
grated heart failure care and palliative home care improve
health-related quality of life, functional classes, and total
Acknowledgments
symptom burden in patients with severe heart failure.13 There
are difficulties concerning the integration of palliative care, The authors would like to thank the National Register
and it also has to be acknowledged that many of the inter- Committee, the Swedish Register of Palliative Care, for
actions that may, by definition, pertain to palliative care are providing the data, particularly Greger Fransson. A special
 366
thanks to Sofia McGarvey for language editing. The authors
acknowledge the Strategic Research Program in Health Care
Sciences (SFO-V), ‘‘Bridging Research and Practice for
Better Health.’’
Author Disclosure Statement
No competing financial interests exist.
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Address correspondence to:
Kristofer Årestedt, RN, PhD
Faculty of Health and Life Sciences
Linnaeus University
Stagneliusgatan 14 b
SE-39182 Kalmar
Sweden
E-mail: kristofer.arestedt@lnu.se