Signs and symptoms of patients with heart failure in palliative care: scoping review

Jardim, Paola Pugian; Cavalcanti, Ana Carla Dantas; Borges, Alyne Santos; Flores, Paula Vanessa Peclat; Rosa, Camila Achão

doi:10.1590/2177-9465-EAN-2022-0064pt

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REVIEW • Esc. Anna. Nery 26 • 2022 • https://doi.org/10.1590/2177-9465-EAN-2022-0064en linkcopy

Signs and symptoms of patients with heart failure in palliative care: scoping review

Authorship SCIMAGO INSTITUTIONS RANKINGS

Objective To map the knowledge production on signs and symptoms of patients with heart failure in palliative care.

Method This is a scoping review conducted according to the JBI method. Its writing was guided by the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews Checklist. The search was carried out by two independent reviewers in reference databases, information, and gray literature portals mostly using the descriptors “heart failure,” “signs and symptoms,” and “palliative care,” with the Boolean operator “and,” in September 2021 without a time frame.

Results Thirty-four articles were included and published between 2001 and 2021 from national and international journals, 21 of which were carried out in the United States of America. These articles made it possible to map 93 signs and symptoms, including pain, dyspnea, fatigue, nausea, and depression — the most frequent ones.

Conclusion and Implications for the practice This scoping review produced a scientific production map about the signs and symptoms of heart failure in palliative care. The knowledge of signs and symptoms helps health care professionals develop techniques and technologies to assess the severity of heart failure, plan palliative interventions, and assess their results.

Keywords:
Palliative Care; Nursing; Heart Failure; Review; Signs and Symptoms

Database

Search strategy

PUBMED

((“Heart Failure”[mh] OR Heart Failure[tiab] OR Cardiac Failure[tiab] OR Heart Decompensation[tiab] OR Myocardial Failure[tiab] OR cardiac backward failure[tiab] OR cardiac decompensation[tiab] OR cardiac incompetence[tiab] OR cardiac insufficiency[tiab] OR cardiac stand still[tiab] OR cardial decompensation[tiab] OR cardial insufficiency[tiab] OR heart insufficiency[tiab] OR decompensatio cordis[tiab] OR heart backward failure[tiab] OR heart decompensation[tiab] OR heart incompetence[tiab] OR insufficientia cardis[tiab] OR myocardial insufficiency[tiab]) AND (“Signs and Symptoms”[mh] OR “Signs and Symptoms”[tiab] OR “Symptoms and Signs”[tiab] OR Symptom*[tiab] OR Sign[tiab] OR SignS[tiab] OR “defining characteristic” [tiab] OR “defining characteristics” [tiab])) AND (“Palliative Care” [mh] OR “Palliative Care” [tiab] OR Palliative Treatment[tiab] OR “Palliative Therapy” [tiab] OR “Palliative Supportive Care” [tiab] OR “Palliative Surgery” [tiab] OR palliation[tiab] OR “palliative consultation” [tiab] OR “palliative medicine” [tiab] OR “symptomatic treatment” [tiab])

S	Author/country/year	Objective	Type of study	Population	Central themes	Scales	Signs or symptoms
1	Abshire et al.¹² USA/2015	To consider how the fear and experience of symptoms are perceived in patients with HF at the end of life.	Convergent mixed-methods	Fifty-five patients with HF at the end of life.	HF; end of life; symptoms	McGill Quality of Life Questionnaire	Dyspnea, pain, fatigue, swelling, psychological symptoms
2	Agustia Nova¹³ Indonesia/2018	To inspect the perceptions of patients with HF about the necessity of palliative care.	Qualitative study	Five patients with NYHA III or IV HF.	HF; palliative care; symptoms	Not applicable.	Dyspnea, fatigue, cough, insomnia, swelling, and nausea
3	Albert et al.¹⁴ USA/2002	To assess and describe the approach used in managing the heart failure program in The Cleveland Clinic Foundation.	Review	Not applicable.	HF; palliative care; symptoms	Not applicable.	Dyspnea, pain, abdominal fullness, nausea, feeding satiety, palpitations, fast heart rate, fatigue, weakened legs, inability to perform daily activities, persistent cough, weight loss, sleep disorders, memory problems, mental obtundation, swelling
4	Alpert et al.¹⁵ USA/2017	Not described.	Review	Not applicable.	HF; palliative care; symptoms	Not applicable.	Pain, dyspnea, depression, nausea, constipation, anorexia, fatigue
5	Anderson et al.¹⁶ USA/2001	To determine the main concernings of patients with terminal illness identified by palliative care teams that work in Manchester and patients were treated in a heart failure clinic.	Prospective study	Two hundred thirteen patients in palliative care (mainly with cancer) and 66 patients with HF.	Terminal illness; HF; symptoms	A questionnaire prepared by the authors	Pain/angina, independence loss, difficulty walking, anxiety or depression, tiredness, shortness of breath, constipation, nausea, vomiting, difficulty sleeping
6	Araújo et al.¹⁷ Portugal/2017	To group the main symptoms according to the basis of pathology, as well as the therapeutic possibilities	Review	Not applicable.	Palliative care; symptoms	Not applicable.	Pain, dyspnea, anorexia, swelling and ascites, nausea and vomiting
7	Årestedt et al.¹⁸ Sweden/2018	To describe the main aspects of palliative care during the last week of the life of patients with HF according to health professionals	National register study	Three thousand, nine hundred eighty-one patients were diagnosed with HF as the basic cause of death.	End of life care; hf; palliative care; symptoms	Sisual scale, analogic, numerical classification scale and abbey pain scale	Pain, shortness of breath, anxiety, nausea, rales, confusion
8	Årestedt et al.¹⁹ Sweden/2021	To describe the prevalence of symptoms such as pain, shortness of breath, anxiety, and nausea, identifying the factors associated with symptoms’ ease in patients with HF during their last week of life.	National register study	Four thousand, two hundred fifteen patients with HF diagnosed as the basic cause of death.	Death; end of life; hf; palliative care; symptoms	Visual scale, analogic, numerical classification scale and Abbey Pain Scale	Pain, anxiety, shortness of breath, nausea
9	Bekelman et al.²⁰ USA/2007	To describe the prevalence of anguish caused by symptoms in patients in ambulatory care with HF.	Cross-sectional study	Sixty patients with HF	Quality of life; depression; symptoms; hf; palliative care	Physical symptoms on the Memorial Symptom Assessment Scale-Short Form;	Shortness of breath, lack of energy, pain, drowsiness, dry mouth, numbness/tingling of hands and feet, difficulty sleeping, cough, difficulty focusing, urinary issues, dizziness, sexual issues, swelling of the hands or feet, constipation, changes in skin, itching, swelling feeling, sweats, change in taste, nausea, “I don’t look like myself,” lack of appetite, weight loss, diarrhea, hair loss, difficulty swallowing, vomiting, mouth sores
						Geriatric Depression Scale-Short Form;
						Kansas City Cardiomyopathy Questionnaire
10	Bekelman et al.²¹ USA/2011	To describe the attended patients and the questions approached in an ambulatorial program of palliative care for patients with HF.	Number of cases	Fifty patients were treated in an ambulatorial program of palliative care in HF.	HF; Palliative care; Symptoms	Kansas City Cardiomyopathy Questionnaire (KCCQ);	Depression, anxiety, pain, fatigue, shortness of breath, and sleep disorders
						Patient Health Questionnaire-9 (PHQ-9);
						Generalized Anxiety Disorder-7 (GAD-7);
						Memorial Symptom Assessment Scale-Short Form (MSAS-SF)
11	Bekelman et al.²² USA/2009	To inspect the necessity related to palliative care in both conditions, comparing the burden symptom and psychological and spiritual well-being in patients with heart failure and cancer.	Cross-sectional study	Sixty ambulatorial patients with HF symptoms and 30 ambulatorial patients with advanced lungs disease or pancreatic cancer.	HF; quality of life; palliative care; symptoms; spirituality; depression	Memorial Symptom Assessment Scale-Short Form;	Shortness of breath, lack of energy, pain, feeling drowsy, dry mouth
						Geriatric Depression Scale-Short Form;
						Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being scale
12	Blinderman et al.²³ USA/2008	To explore the relation between symptoms and quality of life of patients with advanced HF.	Prospective study	One hundred three patients with terminal HF or chronic lung disease.	HF; quality of life; symptoms	Charlson Comorbidity Index (CCI);	Lack of energy, dry mouth, shortness of breath, drowsiness, numbness or tingling in the hands and feet, difficulty sleeping, feeling worried, itching, difficulty focusing, feeling irritated, arm and leg swelling, lack of appetite, pain or pressure in the chest, feeling swelled, dizziness, urinary issues, issues with sexual intercourse or the interest in it, constipation, “I don’t look like myself,” headaches, sweats, weight loss, changes in skin, wheezing, feeling afraid, change in taste, nausea, difficulty swallowing, mouth sores, hair loss, diarrhea, vomiting.
						Short Portable Mental Status Questionnaire (SPMSQ);
						Memorial Symptom Assessment Scale (MSAS);
						Mental Health Inventory-5 (MHI-5);
						Sickness Impact Profile (SIP);
						Multidimensional Index of Life Quality (MILQ);
						Functional Assessment of Chronic Illness Therapy Spirituality Scale (FACIT-Spirituality)
13	Dobbie et al.²⁴ USA/2017	To characterize the patients described by the ambulatorial, palliative cardiology service, including the stage of their HF, symptoms, comorbidities, topics approached in the clinic, prescribed palliative treatments, advanced guidelines, status, and mortality.	Retrospective study	Eighty patients with HF from the palliative care services of Cleveland Clinic.	HF; Palliative care; Symptoms	Edmonton Symptom Assessment Scale (ESAS);	Tiredness, pain, dyspnea, drowsiness, anxiety, depression, loss of appetite, nausea
13	Dobbie et al.²⁴ USA/2017		Retrospective study		HF; Palliative care; Symptoms	Palliative Prognostic Index (PPI)
14	Flint et al.²⁵ USA/2019	To assess if the specific health status of heart failure was associated with the QV domains and identify a scoring rate that grants a deeper evaluation of the QV domains deficit.	Randomized clinical test	Three hundred fourteen patients with heart failure with bad health status.	HF; Symptoms; Depression; Anxiety; Spiritual well-being	Memorial Symptom Assessment Scale-Short Form (MSAS-SF);	Pain, nausea, difficulty sleeping, constipation, dry mouth, numbness/tingling, issues with interest in sex, drowsiness, depression, spiritual well-being
						Kansas City Cardiomyopathy Questionnaire (KCCQ);
						Patient Health Questionnaire-9 (PHQ-9);
						Generalized Anxiety Disorder-7 (GAD-7)
15	Flowers²⁶ USA/2003	To provide a brief and general view of common symptoms and suggestions on HF administration.	Review	Not applicable.	Palliative care; HF	Not applicable.	Fatigue, worsening of renal functions, bad mood and anxiety, sleep disorders, loss of appetite, constipation, urinary issues, swelling, changes in skin
16	Hoyt Zambroski²⁷ USA/2006	To discuss the current status of palliative care for patients with advanced heart failure; To explain the basic pathophysiology and the signs and symptoms resulting from advanced heart failure.	Review	Not applicable.	HF; palliative care; symptoms	Not applicable.	Dyspnea, nocturnal paroxysmal dyspnea, cough and orthopnea, swelling, pain in the chest, sleep disorders, nausea, and swelling
17	Johnson²⁸ USA/2010	Not described.	Text	Not applicable.	HF; palliative care; symptoms	Not applicable.	Shortness of breath, fatigue, loss of appetite, nausea, constipation, dry skin, depression, anxiety
18	Jorgenson et al.²⁹ USA/2016	To describe the palliative actions on patients with HF in the interventional group and examine actions for the subset of patients from the interventional group with the highest symptom load.	Retrospective study	Two hundred thirty-two patients with HF that engaged in an RCT:	HF; palliative care;	Edmonton Symptom Assessment System (ESAS);	Pain, shortness of breath, swelling, tiredness, drowsiness, nausea, lack of appetite, anxiety, depression
				116 = GI		Patient Health Questionnaire 9 (PHQ-9)
				116 = GC
19	Kurogi et al.³⁰ Brazil/2020	To assess the prevalence of symptoms in patients with heart failure and to inspect the relation between symptoms, functional capacity, and performance.	Cross-sectional study	One hundred seventy patients with HF that were hospitalized in inpatient units (IU) or intensive care units (ICU).	HF; Signs and symptoms	Edmonton Symptom Assessment System (ESAS);	Dyspnea, fatigue, tiredness, swelling, weakness, pain, nausea, inappetence, dizziness, cough, tachycardia, anxiety, depression, sleep alteration, sadness
19	Kurogi et al.³⁰ Brazil/2020		Cross-sectional study		HF; Signs and symptoms	Karnofsky Performance Status (KPS)
20	Lowey³¹ USA/2018	This article will focus exclusively on the administration of patients with advanced clinical status or stage D, heart failure, and the usage of palliative or interventional care in their overall treatment plan.	Review	Not applicable.	Advanced care planning; HF; end of life care; palliative care; symptoms control	Not applicable.	Anorexia, confusion, cough, dyspnea, swelling, fatigue, insomnia, pain, anxiety, and depression
21	Lum et al.³² USA/2016	To identify the potentially changeable factors related to patients that foretell the specific health status of the HF throughout one year	Prospective study	Three hundred eighty-four patients with HF.	HF; health status; symptoms; spirituality; depression	Kansas City Cardiomyopathy Questionnaire (KCCQ);	Pain in the chest, Dizziness, Numbness/tingling, Dry mouth, Pain, Nausea, Cough, Constipation, Depressive symptoms, Low spiritual well-being
21	Lum et al.³² USA/2016		Prospective study	Three hundred eighty-four patients with HF.	HF; health status; symptoms; spirituality; depression	Patient Health Questionnaire-9 (PHQ-9)
22	Nordgren and Sörensen³³ Sweden/2003	To reach a deeper understanding of patients with end-stage HF and describe the symptoms of these patients throughout their last six months of life by examining documentation in medical records.	Retrospective study	Eight patients with HF that were hospitalized at least once in the last six months of life.	HF; symptoms; palliative care	Not applicable.	Shortness of breath, pain, fatigue, anxiety, physical activity limitations, nausea, ankle swelling, constipation, loss of appetite, insomnia, persistent cough, confusion, dizziness, urinary incontinence, orthopnea, diarrhea, persistent itching, depression or bad mood, persistent thirst, palpitations, nocturia
23	Opasich and Gualco³⁴ Italy/2007	To explore the load of symptoms and control and to examine some of the instruments used to assess and monitor the suffering of patients with heart failure.	Review	Not applicable.	HF; palliative care; symptoms	Not applicable.	Dyspnea, tiredness, depression, gastrointestinal symptoms, pain, itchiness
24	Oriani et al.³⁵ England/2019	To determine if the POS and IPOS capture the main symptoms and concerns reported by patients with advanced HF.	Secondary analysis	One hundred two patients with HF.	HF; Palliative care;	The Palliative care Outcome Scale (POS);	Poor mobility, shortness of breath, pain, feeling anxious, low quality of life, liquid retention or swelling, lack of appetite, loneliness, lack of focus/insufficient memory, concerns with self-esteem, concerns related to the bowel, drowsiness, itching, cough, depression, not sleeping well
24	Oriani et al.³⁵ England/2019		Secondary analysis	One hundred two patients with HF.	HF; Palliative care;	Integrated Palliative care Outcome Scale (IPOS)
25	Puckett and Goodlin³⁶ Canada/2020	To review the available publications that explore the integration of palliative care in HF treatment and propose an ambulatory model that assesses the necessities and symptoms, in addition to direct HF specialists or palliative care according to this assessment.	Review	Not applicable.	HF; Palliative care;	Not applicable.	Dyspnea, anxiety, pain, depression, sleep disorders, anemia
26	Riley and Beattie³⁷ England/2017	Not described.	Editorial	Not applicable.	HF; Palliative care;	Not applicable.	Shortness of breath, feeling drowsiness/tiredness, pain, “I don’t look like myself,” weight loss, lack of energy, arms/legs swelling, difficulty sleeping, hand/feet tingling, change in taste, difficulty focusing, issues with interest in sexual intercourse, cough, nausea, dizziness, feeling swelled, dry mouth, issues urinating, itching, constipation, vomiting, sweats, diarrhea, worrying, feeling irritated, feeling sadness, feeling nervousness.
27	Shah et al.³⁸ USA/2013	To assess, through the Edmonton Symptom Assessment System (ESAS), the pain and other symptoms experienced by the patients with HF during acute decompensation that requires hospitalization.	Cross-sectional study	One hundred patients with HF history.	HF; Symptoms; pain	Edmonton Symptom Assessment System (ESAS)	Pain, decreased well-being, tiredness, shortness of breath
28	Steinberg et al.³⁹ Canada/2017	To circumscribe the management of symptoms, in addition to offering a home-based protocol for patients with advanced heart failure (HF)	Review	Not applicable.	HF; Palliative care;	Not applicable.	Pain, fatigue, insomnia, nausea, anorexia, constipation, depression, anxiety
29	Stewart and McPherson⁴⁰ USA/2017	To review the most common and distressing symptoms of heart failure, analyze pieces of evidence or the lack of them for the pharmacological management of the symptoms, and provide prescribing considerations according to the side effect, profiles, and comorbidities.	Review	Not applicable.	HF; Symptoms	Not applicable.	Dyspnea, swelling, pain, cachexia, depression, fatigue
30	Texier et al.⁴¹ France/2014	To assess the access to palliative care in cardiologic care during the six months prior to the death and, more particularly, during the last hospitalization.	Retrospective study	Twenty-nine patients died from HF.	HF; Symptoms; Palliative care	Not applicable.	Pain, dyspnea, fatigue, anorexia, nausea, vomiting, constipation, pressure ulcer, unconsciousness
31	Udeoji et al.⁴² USA/2012	To assess the prevalence and severity of pain in patients with chronic, stable heart failure (HF) in an ambulatorial clinic environment.	Cross-sectional study	Sixty-two patients with HF.	HF; symptoms; palliative care	Edmonton Symptom Assessment System (ESAS)	Tiredness, decreased well-being, shortness of breath, drowsiness, pain
32	Yu et al.⁴³ China/2016	To identify symptoms groups among patients with advanced heart failure (HF) and the independent relations with quality of life (QoL)	Cross-sectional study	One hundred nineteen patients with advanced HF.	HF; Palliative care; quality of life	Edmonton Symptom Assessment Scale (ESAS, Chinese version);	Shortness of breath, depression, anxiety, fatigue, nausea, drowsiness, reduced appetite, pain, overall discomfort
32	Yu et al.⁴³ China/2016		Cross-sectional study	One hundred nineteen patients with advanced HF.	HF; Palliative care; quality of life	McGill Quality of Life Questionnaire (MQoL; Chinese version)
33	Zambroski and Bekelman⁴⁴ USA/2008	To review assessment and management strategies for patients with heart failure that remain symptomatic, despite the treatment for heart failure indicated by the guidelines.	Review	Not applicable.	HF; Symptoms; palliative care	Not applicable.	Dyspnea, fatigue, difficulty sleeping, depression, anxiety
34	Zambroski et al.⁴⁵ USA/2005	To describe the characteristics of patients that received palliative care, identify the most commonly related symptoms by the patients with HF at the psychiatric hospital during their last seven days of life, and identify interventions used by nurses from the psychiatric hospital to control the symptoms.	Retrospective study	Ninety patients with HF that died when receiving palliative care.	HF; Symptoms; palliative care	Charlson Comorbidity Index (CCI);	Pain, shortness of breath, swelling, urinary incontinence, diarrhea
34	Zambroski et al.⁴⁵ USA/2005		Retrospective study		HF; Symptoms; palliative care	Palliative Performance Scale (PPS)

		Shortness of breath/Dyspnea	Pain	Fatigue/Tiredness/Lack of energy/Weakness	Nausea	Depression/Depressive symptoms	Sleep disorders	Anxiety	Swelling/Edema	Constipation	Cough	Appetite	Drowsiness	Anorexia/Cachexia	Dry mouth/Persistent thirst	Itching	Dizziness	Vomiting	Urinary issues	Diarrhea	Numbness/Tingling	Concentration/Memory/Cognition	Changes in skin	Weight loss	Issues with sexual intercourse or interest in it	Self-esteem	Other psychological symptoms	Daily activity/Mobility	Confusion/Unconsciousness	Headache/Pain in the chest	Change in taste	Sweats	Gastrointestinal symptoms	Difficulty swallowing	Decreased well-being	Mouth sores	Orthopnea	Palpitations/Fast heart rate	Hair loss	Spiritual well-being	Quality of life	Anemia	Ascites	Wheezing	Overall discomfort	Nocturnal paroxysmal dyspnea	Rales	Weight gain	Worsening of renal functions	Tachycardia	Pressure ulcer
S1	Abshire et al.¹²	X	X	X					X																		X
S2	Agustia Nova¹³	X		X	X		X		X		X
S3	Albert et al.¹⁴	X	X	X	X		X		X		X																	X					X					X
S4	Alpert et al.¹⁵	X	X	X	X	X				X				X								X		X
S5	Anderson et al.¹⁶	X	X	X	X	X	X	X		X								X										X
S6	Araújo et al.¹⁷	X	X		X				X					X				X																									X
S7	Årestedt et al.¹⁸	X	X		X			X																					X																		X
S8	Årestedt et al.¹⁹	X	X		X			X
S9	Bekelman et al.²⁰	X	X	X	X		X		X	X	X	X	X		X	X	X	X	X	X	X	X	X	X	X	X					X	X		X		X			X
S10	Bekelman et al.²¹	X	X	X		X	X	X
S11	Bekelman et al.²²	X	X	X									X		X	X	X
S12	Blinderman et al.²³	X	X	X	X	X	X		X	X	X	X	X		X			X	X	X	X	X	X	X	X	X	X			X	X	X		X		X			X					X
S13	Dobbie et al.²⁴	X	X	X	X	X		X				X	X																											X
S14	Flint et al.²⁵		X		X	X	X			X			X		X						X				X
S15	Flowers²⁶			X		X	X	X	X	X		X							X				X																										X
S16	Hoyt Zambroski²⁷	X			X		X		X		X			X																X							X									X		X
S17	Johnson²⁸	X	X	X	X	X		X		X		X											X
S18	Jorgenson et al.²⁹	X	X	X	X	X		X	X			X	X
S19	Kurogi et al.³⁰	X	X	X	X	X	X	X	X		X	X					X																																	X
S20	Lowey³¹	X	X	X		X	X	X	X		X			X															X
S21	Lum et al.³²		X		X	X				X	X				X		X				X									X										X
S22	Nordgren and Sörensen³³	X	X	X	X	X	X	X	X	X	X	X			X	X	X		X	X								X	X								X	X
S23	Opasich and Gualco³⁴	X	X	X		X										X																	X								X
S24	Oriani et al.³⁵	X	X	X		X	X	X	X		X	X	X			X						X				X	X	X					X
S25	Puckett and Goodlin³⁶	X	X			X	X	X																																		X
S26	Riley and Beattie³⁷	X	X	X	X	X	X		X	X	X	X	X		X	X	X	X	X	X	X	X		X	X	X	X				X	X
S27	Shah et al.³⁸	X	X	X																															X
S28	Steinberg et al.³⁹		X	X	X	X	X	X		X				X
S29	Stewart and McPherson⁴⁰	X	X	X		X			X					X
S30	Texier et al.⁴¹	X	X	X	X					X				X				X											X																						X
S31	Udeoji et al.⁴²	X	X	X									X																						X
S32	Yu et al.⁴³	X	X	X	X	X		X				X	X																																X
S33	Zambroski and Bekelman⁴⁴	X		X		X		X
S34	Zambroski et al.⁴⁵	X	X				X		X										X	X
	Total	30	30	26	21	21	17	16	16	12	11	11	10	7	7	6	6	6	6	5	5	5	4	4	4	4	4	4	4	3	3	3	3	2	2	2	2	2	2	2	1	1	1	1	1	1	1	1	1	1	1

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[1] Source: Prepared by the authors.