L’HAD permet de prodiguer au domicile des soins lourds et techniques et/ou requérant une importante coordination pluridisciplinaire, non réalisables par les seuls professionnels de ville, dans des conditions de sécurité et de qualité comparables à celles d’un hébergement en établissement de santé, dès lors que sont remplies des conditions de faisabilité. Elle est nécessairement prescrite par un médecin, en accord avec le patient et son entourage. Considérablement développée depuis 20 ans, elle intervient sur tous les départements de métropole et d’outre-mer (en 2019 : 295 établissements).
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BACKGROUND: Use of hospice has grown among patients with heart failure; however, gaps remain in the ability of agencies to tailor services to meet their needs.
AIM: This study describes the implementation of a cardiac home hospice program and insights for dissemination to other hospice programs.
DESIGN: We conducted a multimethod analysis structured around the Reach Effectiveness Adoption Implementation and Maintenance (RE-AIM) framework.
SETTINGS/PARTICIPANTS: We used electronic medical records for our quantitative data source and interviews with hospice clinicians from a not-for-profit hospice agency (N = 32) for our qualitative data source.
RESULTS: Reach-A total of 1273 participants were enrolled in the cardiac home hospice program, of which 57% were female and 42% were black or Hispanic with a mean age was 86 years. Effectiveness-The cardiac home hospice program increased hospice enrollment among patients with heart failure from 7.9% to 9.5% over 1 year (2016-2017). Adoption-Institutional factors that supported the program included the acute need to support medically complex patients at the end of life and an engaged clinical champion. Implementation-Program implementation was supported by interdisciplinary teams who engaged in care coordination. Maintenance-The program has been maintained for over 3 years.
CONCLUSION: The cardiac home hospice program strengthened hospice clinicians' ability to confidently provide care for patients with heart failure, expanded awareness of their symptoms among clinicians, and was associated with increased enrollment of patients with heart failure over the study period. This RE-AIM evaluation provides lessons learned and strategies for future adoption, implementation, and maintenance of a cardiac home hospice program.
Although burnout syndrome has been investigated in depth, studies specifically focused on palliative home care are still limited. Moreover, there is still a lack of evidence regarding the interplay between emotional flexibility and sensitivity to context in preventing burnout in home care settings. For these reasons, the aims of this study were to examine burnout symptoms among practitioners specializing in palliative home care and to investigate the role of regulatory flexibility and sensitivity to context in understanding burnout. An exploratory cross-sectional design was adopted. A convenience sample (n = 65) of Italian specialist palliative care practitioners participated in this study. Participants were recruited between February and April 2019 from two palliative home care services that predominantly cared for end-of-life cancer patients. The Italian version of the Maslach Burnout Inventory (MBI), the Flexible Regulation of Emotional Expression (FREE) scale (a measure of emotional flexibility), and the Context Sensitivity Index (CSI) (a measure of sensitivity to context) were administered. Analyses of variance were conducted using the three MBI factors as dependent variables and profession as an independent variable. Subsequently, three identical analyses of covariance were conducted with age, work experience, flexibility and sensitivity to context as covariates. The results showed a low burnout risk for all three of the MBI factors, and there were no gender differences. An ANOVA revealed a significant effect of profession type and age on the emotional exhaustion factor of the MBI, and an ANCOVA indicated that these effects persisted after covariates were accounted for. The results also showed a significant effect of the FREE score on emotional exhaustion. These findings can help explain the differential contributions of profession type and age to the burnout symptoms investigated. In addition, the emotional flexibility component, as an aspect of resilience, represents a significant and specific factor of emotional exhaustion. Interventions to prevent burnout must consider these relationships.
Purpose: St. Gabriel’s Hospital (SGH) in Namitete, Malawi, has a Home-Based Palliative Care program of 60 community health workers (CHWs) to support rehabilitation work. Over 5 years, these CHWs received support through annual rehabilitation training programs. The study explores the nature of the CHWs’ roles and factors affecting the program’s sustainability.
Subjects: Participants were home-based palliative care CHWs at SGH (n = 60).
Methods: This is a mixed-methods study including qualitative and quantitative data and analysis methods. Data were collected from training surveys, focus group discussion material, field and home-visit observation checklists.
Results: Results showed that 59% of the CHWs traveled = 5 km to visit patients. 100% of the 57 patients had participation restrictions. Following trainings, 93.3% of the CHWs felt more prepared. Qualitative analysis revealed four themes: (1) Empowerment and Motivation; (2) Barriers to care; (3) Communication and Network; (4) Scope of practice and Self-Perception of impact.
Conclusion: This study illuminated important aspects of the CHWs’ work: empowerment through training, burden of travel, and altruism. Future studies could include impact of CHW-to-caregiver training, patient outcome measures following care, and future training needs.
Significance: This study provides a unique perspective of the successes, barriers, and motivations of home-based CHWs in Malawi.
BACKGROUND: Despite a majority of persons receiving hospice care in their homes, there are gaps in understanding how to facilitate goals of care conversations between persons with heart failure and healthcare providers.
AIM: To identify barriers and facilitators which shape goals of care conversations for persons with heart failure in the context of home hospice.
DESIGN: A qualitative descriptive study design was used with semi-structured interviews.
SETTING/PARTICIPANTS: We conducted qualitative interviews with persons with heart failure, family caregivers, and interprofessional healthcare team members at a large not-for-profit hospice agency in New York City between March 2018 and February 2019.
RESULTS: A total of 39 qualitative interviews were conducted, including with healthcare team members (e.g. nurses, physicians, social workers, spiritual counselors), persons with heart failure, and family caregivers. Three themes emerged from the qualitative interviews regarding facilitators and barriers in goals of care conversations for better decision-making: (1) trust is key to building and maintaining goals of care conversations; (2) lack of understanding and acceptance of hospice inhibits goals of care conversations; and (3) family support and engagement promote goals of care conversations.
CONCLUSION: Findings from this study suggest that interventions designed to improve goals of care conversations in the home hospice setting should focus on promoting understanding and acceptance of hospice, family support and engagement, and building trusting relationships with interprofessional healthcare teams.
BACKGROUND: Telehealth is increasingly being used in home care and could be one measure to support the needs of home-based patients receiving palliative care. However, no previous scoping review has mapped existing studies on the use of telehealth for patients in palliative home care.
OBJECTIVE: The aim of this study was to map and assess published studies on the use of telehealth for patients in palliative home care.
METHODS: A scoping review was conducted using the methodological framework of Arksey and O'Malley. Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. A systematic and comprehensive search of Medical Literature Analysis and Retrieval System Online, EMBASE, PsycINFO, and Cumulative Index to Nursing and Allied Health was performed for studies published between January 2000 and October 2018. Two authors independently assessed eligibility and extracted data.
RESULTS: The review included 22 papers from 19 studies. Four thematic groupings were identified among the included papers: easy and effortless use of telehealth regardless of the current health condition, visual features that enhance communication and care via telehealth, symptom management and self-management promotion by telehealth, and perceptions of improved palliative care at home.
CONCLUSIONS: The use of telehealth in palliative home care seems to be feasible, improving access to health care professionals at home and enhancing feelings of security and safety. The visual features of telehealth seem to allow a genuine relationship with health care professionals. However, there are contradicting results on whether the use of telehealth improves burdensome symptoms and quality of life. Future research should investigate the experiences of using telehealth among patients with life-limiting illness other than cancer and patients aged 85 years or older. More research is needed to increase the body of knowledge regarding the effectiveness of telehealth on symptoms and quality of life.
Understanding the temporal trends in the place of death among patients in receipt of home-based palliative care can help direct health policies and planning of health resources. This paper aims to assess the temporal trends in place of death and its determinants over the past decade for patients receiving home-based palliative care. This paper also examines the impact of early referral to home-based palliative care services on patient's place of death. Survey data collected in a home-based end-of-life care program in Toronto, Canada from 2005 to 2015 were analysed using a multivariate logistic model. The results suggest that the place of death for patients in receipt of home-based palliative care has changed over time, with more patients dying at home over 2006-2015 when compared to 2005. Also, early referral to home-based palliative care services may not increase a patient's likelihood of home death. Understanding the temporal shifts of place of death and the associated factors is essential for effective improvements in home-based palliative care programs and the development of end-of-life care policies.
BACKGROUND: Patients with advanced cancer, receiving at-home palliative care, are subject to numerous symptoms that are changeable and often require attention, a stressful situation that also impacts on the family caregiver. It has been suggested that music therapy may benefit both the patient and the caregiver. We propose a study to analyse the efficacy and cost utility of a music intervention programme, applied as complementary therapy, for cancer patients in palliative care and for their at-home caregivers, compared to usual treatment.
METHOD: A randomised, double-blind, multicentre clinical trial will be performed in cancer patients in at-home palliative care and their family caregivers. The study population will include two samples of 40 patients and two samples of 41 caregivers. Participants will be randomly assigned either to the intervention group or to the control group. The intervention group will receive a seven-day programme including music sessions, while the control group will receive seven sessions of (spoken word) therapeutic education. In this study, the primary outcome measure is the assessment of patients' symptoms, according to the Edmonton Symptom Assessment System, and of the overload experienced by family caregivers, measured by the Caregiver Strain Index. The secondary outcomes considered will be the participants' health-related quality of life, their satisfaction with the intervention, and an economic valuation.
DISCUSSION: This study is expected to enhance our understanding of the efficacy and cost-utility of music therapy for cancer patients in palliative care and for their family caregivers. The results of this project are expected to be applicable and transferrable to usual clinical practice for patients in home palliative care and for their caregivers. The approach described can be incorporated as an additional therapeutic resource within comprehensive palliative care. To our knowledge, no previous high quality studies, based on a double-blind clinical trial, have been undertaken to evaluate the cost-effectiveness of music therapy. The cost-effectiveness of the project will provide information to support decision making, thereby improving the management of health resources and their use within the health system.
Background: The nutrition profile of palliative home care clients is unknown. This study describes this group and their nutrition issues and evaluates the performance of the interRAI nutrition Clinical Assessment Protocol (CAP).
Methods: This was a cross-sectional secondary analysis using Ontario interRAI Palliative Care (interRAI PC) Assessment data. The sample represents 74,963 unique Ontario home care clients assessed between 2011 and 2018. Frequencies and standardized differences (stdiffs) of nutrition characteristics were presented for cancer (n = 62,394) and noncancer (n = 12,569) diagnostic subgroups. Rates of triggering the nutrition CAP were presented by nutrition issue to evaluate its performance.
Results: Of this sample, 16.7% were =85 years of age, 52.6% had a prognosis between 6 weeks and 6 months, and 41.4% required assistance with eating. The prevalence was higher among those with nervous/mental/behavioral disorders (72.6%) compared with those with cancer (37.6%; stdiff = 0.75). However, most nutrition issues experienced were similar (stdiff < 0.20) across diagnostic groups. Of the entire sample, 21% triggered the nutrition CAP, indicating a need for further evaluation or intervention. Yet, 73.4% of those who experienced dry mouth, 71.8% of those who required assistance with eating, and 68.4% of those who received a nutrition consult within the last 3 days did not trigger the nutrition CAP.
Conclusions: Nutrition issues are prevalent in palliative home care clients, regardless of diagnosis; yet the nutrition CAP identified a small fraction of this group. There is a need to focus research and care guidelines toward life-limiting illnesses beyond cancer and address nutrition-related issues in this population.
Background: Understanding the factors that affect the congruence between preferred and actual place of death may help providers offer clients customized end-of-life care settings. Little is known about this congruence for cancer patients in receipt of home-based palliative care.
Objectives: This study aims to determine the congruence between preferred and actual place of death among cancer patients in home-based palliative care programs.
Design: A longitudinal prospective cohort study was conducted. Congruence between preferred and actual place of death was measured. Both univariate and multivariate analyses were used to assess the determinants of achieving a preferred place of death. From July 2010 to August 2012, a total of 290 caregivers were interviewed biweekly over the course of their palliative care trajectory from entry to the program and death.
Results: The overall congruence between preferred and actual place of death was 71.72%. Home was the most preferred place of death. The intensity of home-based nursing visits and hours of care from personal support workers (PSWs) increased the likelihood of achieving death in a preferred setting.
Conclusions: The provision of care by home-based nurse visits and PSWs contributed to achieving a greater congruence between preferred and actual place of death. This finding highlights the importance of formal care providers in signaling and executing the preferences of clients in receipt of home-based palliative care.
Aim: To pilot test a home end-of-life and palliative care intervention for family caregivers and patients with rare advanced lung diseases and estimate effect-size for the power analysis in a future clinical trial.
Design: This study uses a parallel randomized control trial. Families are randomly assigned to the intervention group or the control group in a 1:1 fashion.
Methods: The study population includes patients with rare advanced lung diseases and their family caregivers who are involved in patients’ home care. The control group receives standard care through their hospital or outpatient clinics. The intervention group receives standard care plus 2-weekly home end-of-life and palliative care coaching by experienced community nurses. Primary outcome is breathlessness measured by shortness of breath scale. Secondary outcomes are: (1) caregivers’ anxiety and depression measures; (2) the presence of patient’s signed advance directives in the medical record or not; and (3) Helpfulness of intervention measured by self-report Helpfulness scale. The study was funded in October 2018 and received ethical Institutional Review Board approval in February 2019.
Discussion: West Virginia has one of the highest incidence rates of lung disease deaths in the nation. However, there is inadequate home end-of-life and palliative care for this underserved population. This is an initial interventional study of nurse-led coaching home-based palliative care for rare advanced lung diseases in rural Appalachia. Developing research collaboration with clinicians is essential for enrollment. Enrollment was successful due to regular meetings with pulmonologists who screened patients per the study inclusion criteria in their specialty clinic and made direct referrals to the research assistants. Results of this study will be used in the future trial.
Impact: The findings will contribute to the evidence-based home nursing care, planning for family/patient preferences and supportive end-of-life palliative care for managing advanced lung diseases at home.
Objective: Bereavement care is one of the major components of hospice palliative care. Previous studies revealed the barriers to the success of the system, including lack of time or support from mental health professionals. Few studies have explored the intrapersonal barriers to bereavement care by clinical staff. The aims of the study were to explore (1) the emotional and cognitive barriers of bereavement care by hospice palliative care staff and (2) the demographic and work characteristics related to these emotional and cognitive barriers.
Method: The participants were clinical staff (n = 301) who were working in hospice palliative care units, including hospice wards, home care, and hospital-based palliative care teams. Their professional backgrounds included physicians (n = 12), nurses (n = 172), social workers (n = 59), psychologists (n = 34), spiritual care specialists (n = 15), and others (n = 9). A cross-sectional design was used and a standardized questionnaire including emotional and cognitive barriers was developed. Information on demographic and work characteristics was also collected. Content validity index, an exploratory factor analysis, and multiple regression analysis were conducted.
Results: One emotional barrier, “negative emotional reactions” (13 items, Cronbach's a = 0.92), and three cognitive barriers, “lack of ability” (7 items, Cronbach's a = 0.85), “belief in avoidance” (5 items, Cronbach's a = 0.86), and “outcome expectancy” (4 items, Cronbach's a = 0.85) were identified. Clinical staff who had higher working stress, lower self-rated ability for bereavement care, and higher negative impact from major life loss tended to have higher emotional and cognitive barriers.
Significance of results: Clinical staff should be aware of intrapersonal barriers to bereavement care. Educational programs should be developed to improve the ability to engage in bereavement care.
Context: Socioeconomic status (SES) is an important determinant of disparities in health services and may affect the utilization of hospice care services during end-of-life (EOL) treatment in cancer patients. However, previous studies evaluating the association between SES and utilization of hospice care services among cancer patients revealed inconsistent findings.
Objectives: This study aimed to determine the association between SES and utilization of hospice care services during the last year of life in cancer patients.
Methods: From January 1, 2006, through December 31, 2016, we identified adults with cancer diagnoses from the Registry for Catastrophic Illness in Taiwan. The cancer diagnoses in study subjects were proved by the pathohistological reports. The utilization of hospice care services during the last year of life in cancer patients included hospice inpatient care, hospice-shared care, and hospice home care.
Results: In the follow-up period, 28.6% of 516,409 cancer patients utilized hospice care services during the last year of life. After adjusting for other covariates, low SES significantly reduced the utilization of hospice care services by 18% during the last year of life in cancer patients. Moreover, a positive trend between decreasing levels of SES and lower utilization of hospice care during EOL treatment was noted (P <0.001).
Conclusions: Low SES was associated with lower utilization of hospice care services during EOL care in cancer patients. Our data support the need to target low SES cancer patients in efforts to optimally increase hospice care services during EOL care.
Les causes de rupture du maintien au domicile de personnes en fin de vie sont souvent liées à l’épuisement des proches et au sentiment d’insécurité. L’objectif de cette étude est de connaître les attentes envers le médecin généraliste (MG) de l’aidant principal d’une personne en phase palliative avancée au domicile. Il s’agit d’une étude qualitative sur la base de dix entretiens semi-directifs menés avec un guide d’entretien auprès de proches de personnes décédées. Les enregistrements ont fait l’objet d’une analyse de contenu. Les principales attentes envers le MG concernent sur le plan technique, un ajustement des thérapeutiques ; sur le plan organisationnel, une disponibilité importante ainsi qu’un lien entretenu avec les différents intervenants et les structures notamment de soins palliatifs ; sur le plan relationnel, une écoute et une information sur l’évolution de la maladie ; sur le plan décisionnel, le respect de la volonté du patient. Les résultats sont discutés à partir de trois concepts adaptés au MG, à savoir la capacité d’adaptation de sa pratique et de son savoir-être, l’anticipation des situations d’urgence et de l’évolution de la maladie, et enfin l’assurance d’une continuité des soins qui passe notamment par leur permanence et leur coordination. Les moyens dont dispose le MG paraissent insuffisants pour assurer le maintien à domicile devant la charge que représente un patient en phase palliative avancée. La diffusion de la démarche palliative au domicile et l’optimisation de l’interprofessionnalité auprès des personnes en fin de vie au domicile et de leurs proches sont à développer. L’enjeu est le respect de la demande du patient de mourir à son domicile.
BACKGROUND: Children and families in pediatric palliative care depend on close contact with health care personnel, and electronic health (eHealth) is suggested to support care at home by facilitating their remote interactions.
OBJECTIVE: This study aimed to identify and review the use of eHealth to communicate and support home-based pediatric palliative care and appraise the methodological quality of the published research.
METHODS: We conducted a convergent, systematic mixed methods review and searched Medical Literature Analysis and Retrieval System Online (Medline), EMBASE, PsycINFO, Cochrane Library, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Web of Science, and Scopus for eligible papers. Studies evaluating 2-way communication technology for palliative care for children aged = 18 years and applying quantitative, qualitative, or mixed methods from 2012 to 2018 were eligible for inclusion. Quantitative and qualitative studies were equally valued during the search, screening, extraction, and analysis. Quantitative data were transformed into qualitative data and analyzed using a thematic analysis. Overall, 2 independent researchers methodologically appraised all included studies.
RESULTS: We identified 1277 citations. Only 7 papers were eligible for review. Evaluating eHealth interventions in pediatric palliative care poses specific methodological and ethical challenges. eHealth to facilitate remote pediatric palliative care was acknowledged both as an intrusion and as a support at home. Reluctance toward eHealth was mainly identified among professionals.
CONCLUSIONS: The strengths of the conclusions are limited by the studies' methodological challenges. Despite the limitless possibilities held by new technologies, research on eHealth in home-based pediatric palliative care is scarce. The affected children and families appeared to hold positive attitudes toward eHealth, although their views were less apparent compared with those of the professionals.
TRIAL REGISTRATION: PROSPERO CRD42018119051; https://tinyurl.com/rtsw5ky.
Death in America is changing from hospital to home, which demands complex skills by family caregivers. However, information from family members about the challenges of providing home hospice care until death is scant. To understand the challenges a family caregiver confronts when he/she decides to deliver hospice care and during the actual delivery of the hospice care, we used descriptive phenomenology methods to document the experience of 18 family caregivers as they delivered home hospice care. We learned the decision to begin home hospice was made by a physician, followed frequently by family resistance and refusal to assist. Family caregiver burden is enormous, compounded by fatigue, sleeplessness, and confusion on issues such as morphine dosage and administration. The stages and process of dying, such as transition, baffled family caregivers. All family caregivers agree financial and emotion support, empathic advocacy, and affirmation of their worth are needed to sustain them to care for the dying. The peacefulness following offering a home death comes at a high price to family caregivers. Evidence is needed from a randomized controlled trial as to effectiveness of advocacy support for family caregivers to increase their resiliency and higher probability of a good death for the dying.
BACKGROUND: COPD patients often use many medical resources, such as hospital admissions and medical imaging, inappropriately close to death. Palliative home care (PHC) could beneficially affect his.
AIM: To study the effect of use and timing of PHC on medical resource use and costs in the last 30 }days before death (DBD) for COPD.
METHODS: Retrospective study of all Belgian decedents in 2010-2015 with COPD and a primary cause of death being COPD or cardiovascular diseases. Odds ratios (OR) for medical resources were calculated between using and four PHC timing categories (>360; 360-181; 180-91; 90-31 DBD) versus not using. Confounders were socio-demographic, care intensity and disease severity variables.
RESULTS: Of the 58 527 decedents with COPD, 644 patients (1.1%) received PHC earlier than 30 DBD. Using PHC (versus not using) decreased the OR for hospitalisation (0.35), intensive care unit admission (0.16), specialist contacts (0.58), invasive ventilation (IV) (0.13), medical imaging including chest radiograph (0.34), sedatives (0.48) and hospital death (0.14). It increased the OR for home care (3.27), general practitioner contact (4.65), palliative care unit admission (2.61), non-IV (2.65), gastric tube (2.15), oxygen (2.22) and opioids (4.04) (p<0.001). Mean total healthcare costs were €1569 lower for using PHC. All PHC timing categories showed a benefit in medical resource use and costs. However, we observed the largest benefit in the category PHC 90-31 DBD.
CONCLUSION: Health policy and services should focus on increasing PHC access, while research should further explore early PHC initiation for COPD. Funding SBO IWT nr. 140009.
BACKGROUND: An increasing number of patients with terminal illnesses prefer to die in their own homes due to aging, high medical payments, a limited number of hospitalization days, and the ability to receive care from family members. However, few studies have been conducted on the subjective perception and value of caregivers for home-based palliative care (HBPC).
OBJECTIVE: To identify common themes and topics of primary family caregivers' lived experiences with HBPC when taking care of terminally ill family members.
METHODS: We conducted audio-recorded transcripts of one-on-one in-depth interviews of primary family caregivers of HBPC. Through a purposive sampling method, the participants were all interviewed; these interviews were transcribed verbatim and analyzed using a grounded theory approach.
RESULTS: A total of 22 primary family caregivers participated in the study. "Wholeheartedly accompanying one's family to the end of life at home" was the core category. Six main themes describing caregivers' experiences emerged from the interviews: (1) learning the basic skills of end-of-life home care, (2) arranging the sharing and rotation of care, (3) preparing for upcoming deaths and funerals, (4) negotiating the cultural and ethical issues of end-of-life home care, (5) ensuring a comfortable life with basic life support, and (6) maintaining care characterized by concern, perseverance, and patience.
CONCLUSIONS: Primary family caregivers of HBPC need support and must learn home care skills by means of the holistic approach. It is crucial to establish assessment tools for caregivers' preparedness for HBPC, including biopsychosocial and cultural considerations.
BACKGROUND: Hospitalisation during the last weeks of life when there is no medical need or desire to be there is distressing and expensive. This study sought palliative care initiatives which may avoid or shorten hospital stay at the end of life and analysed their success in terms reducing bed days.
METHODS: Part 1 included a search of literature in PubMed and Google Scholar between 2013 and 2018, an examination of governmental and organisational publications plus discussions with external and co-author experts regarding other sources. This initial sweep sought to identify and categorise relevant palliative care initiatives. In Part 2, we looked for publications providing data on hospital admissions and bed days for each category.
RESULTS: A total of 1252 abstracts were reviewed, resulting in ten broad classes being identified. Further screening revealed 50 relevant publications describing a range of multi-component initiatives. Studies were generally small and retrospective. Most researchers claim their service delivered benefits. In descending frequency, benefits identified were support in the community, integrated care, out-of-hours telephone advice, care home education and telemedicine. Nurses and hospices were central to many initiatives. Barriers and factors underpinning success were rarely addressed.
CONCLUSIONS: A wide range of initiatives have been introduced to improve end-of-life experiences. Formal evidence supporting their effectiveness in reducing inappropriate/non-beneficial hospital bed days was generally limited or absent.
TRIAL REGISTRATION: N/A.
Background and aims: The prevalence of malnutrition is over 70% in advanced cancer patients and impacts negatively on survival and quality of life. Artificial nutrition can be integrated into a home palliative care program. This observational study aims to describe the criteria for identifying the cancer patients that could benefit from home artificial nutrition (HAN) and to evaluate its impact on survival and performance status.
Methods: The selection criteria for patient's eligibility to HAN were: Karnofsky Performance Status (KPS) =40, life expectancy =6 weeks, inadequate caloric intake ± malnutrition, suitable psycho-physical conditions and informed consent. The access route for nutritional therapy (home parenteral nutrition, HPN; home enteral nutrition, HEN) was chosen according to the ESPEN Guidelines. The parameters considered were: primary site of the tumor; oral food intake; nutritional status; stage of cachexia; fluid, energy and protein supplied by HAN; survival.
Results: From 1990 to 2019, 43,474 cancer patients were assisted at home in Bologna (Italy). HAN started in 969 patients (2.2% of total patients, 571 men and 398 women, mean age 65.7 ± 12.7 years): HPN in 629 patients (64.9%), with gastrointestinal obstruction as the main indication; HEN in 340 patients (35.1%), with dysphagia as the main indication. Considering the 890 deceased patients, the mean survival after the start of HAN was 18.3 weeks and 649 patients (72.9%) survived more than 6 weeks. The mean survival was higher in HEN (22.1 weeks) compared to HPN patients (16.1 weeks) (p < .001). After one month, KPS was unchanged in 649 (67.0%), increased in 232 (23.9%) and decreased in 88 patients (9.1%). The mean KPS increased in patients starting HAN in pre-cachexia and cachexia (p < .001). Cachexia and refractory cachexia at the entry were associated with a reduced survival [odds ratio: 1.5 and 2.3 respectively, p < .001 for both condition] respect to pre-cachexia.
Conclusions: The selection criteria allow the identification of the patient who can take advantage of HAN. HAN can be effective in avoiding death from malnutrition in 73% of patients, and in maintaining or improving the KPS at one month in 90% of cases. The benefits provided by HAN on survival and performance status depend on the cachexia degree at the entry.