Determinants of Home Death in Palliative Home Care: Using the interRAI Palliative Care to Assess End-of-Life Care

Abstract Background: In Colombia, recent legislation regarding end-of-life decisions includes palliative sedation, advance directives and euthanasia. We analysed which aspects influence health professionals´ decisions regarding end-of-life medical decisions and care for cancer patients.Methods: Qualitative descriptive–exploratory study based on phenomenology using semi-structured interviews. We interviewed 28 oncologists, palliative care specialists, general practitioners and nurses from three major Colombian institutions, all involved in end-of-life care of cancer patients: Hospital Universitario San Ignacio and Instituto Nacional de Cancerología in Bogotá and Hospital Universitario San José in Popayan. Results: When making decisions regarding end-of-life care, professionals consider: 1. Patient’s clinical condition, cultural and social context, in particular treating indigenous patients requires special skills. 2. Professional conditions: training in palliative care and experience in discussing end-of-life options and fear of legal consequences. Physicians indicate that many patients deny their imminent death which hampers shared decision-making and conversations. They mention frequent unclarity regarding who initiates conversations regarding end-of-life decisions with patients and who finally takes decisions. Patients rarely initiate such conversations and the professionals normally do not patients directly for their preferences. Fear of confrontation with family members and lawsuits leads doctors to carrying out interventions such as initiating artificial feeding techniques and cardiopulmonary resuscitation, even in absence of expected benefits. The opinions regarding the acceptability of palliative sedation, euthanasia and use of medications to accelerate death without the patients´ explicit request vary greatly. 3. Conditions of the insurance system: limitations exist in the offer of oncology and palliative care services for important proportions of the Colombian population. Colombians have access to opioid medications, barriers to their application are largely in delivery by the health system, the requirement of trained personnel for intravenous administration and ambulatory and home care plans which in Colombia are rare.Conclusions: to improve end-of-life decision making, Colombian physicians and patients need to openly discuss wishes, needs and care options and prepare caregivers. Promotion of palliative care education and development of palliative care centres and home care plans is necessary to facilitate access to end-of-life care. Patients and caregivers’ perspectives are needed to complement physicians’ perceptions and practices. Key Message: The results highlight the importance of improving access to end-of-life care in Colombia, and diminish the “denial of imminent death” among patients and caregivers to facilitate end-of-life discussions and shared decisions; interventions to prepare caregivers and promote home care.

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Predictors of home death and the quality of end-of-life care at a cancer center in Brazil.

Journal of Clinical Oncology ◽

10.1200/jco.2021.39.15_suppl.e24004 ◽

2021 ◽

Vol 39 (15_suppl) ◽

pp. e24004-e24004

Author(s):

Sarah Gomes ◽

Danielle Silva ◽

Júlia Sá ◽

Thais Passarini ◽

Matheus Viana ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

Cancer Patients ◽

End Of Life Care ◽

Palliative Care Team ◽

Cancer Center ◽

Life Care ◽

Home Death

e24004 Background: Early palliative care has shown an improvement in the quality of life of cancer patients by reducing overtreatment at the end of life and improving symptomatic control. Little is known about the quality of death in developing countries. End-of-life cancer care varies widely, and very few centers evaluate it systematically. The aim of the present study is to analyze the impact of follow-up of cancer patients by an outpatient palliative care team (OPCT) on the end-of-life outcomes at a Cancer Center in Brazil. Methods: We retrospectively retrieved data from electronic medical records of cancer patients who were treated at a Cancer Center in Brazil and who died from cancer or associated complications during the year of 2020. They were divided into two groups: OPCT and No-OPCT. OPCT group was followed-up by a multidisciplinary team composed of physician, nurse, physiotherapist, psychologist, nutritionist, social worker, speech-language therapist, and pharmacist, who regularly evaluated cancer patients during their treatments at outpatient setting. During COVID-19 pandemic, some patients were evaluated by telemedicine appointments. No-OPCT group was followed-up by cancer physicians exclusively. We performed univariate comparisons and multivariate analysis by Cox proportional hazards model. p < 0.05 was deemed as statistically significant. Results: A total of 315 patients were included in the study: OPCT (N=122) and No-OPCT (N=193). The groups were well balanced in relation to median age (61yo vs 63yo), gender (women: 51% vs 54%), and TNM stage (stage IV: 69% vs 65%). Gastrointestinal and breast cancers were the most prevalent. The rate of home death was 44% in the OPCT group, compared to 16% in the No-OPCT group (p<0.001). The rate of admission in intensive care unit in the last 30 days of life (ICU30) was 13% vs 10%, respectively (p=0.413). Likewise, the rate of patients treated with chemotherapy in the last 30 days of life (CT30) was 42% vs 51% (p=0.146). In multivariate analysis, follow-up by the OPCT was the strongest independent predictor of home death (Table). In contrast, ICU30 and CT30 were inversely correlated with this outcome. Age, gender, and TNM stage did not have influence on the place of death. Conclusions: Follow-up by an OPCT had a strong positive impact on end-of-life care of cancer patients in a country which does not have Hospice culture. The OPCT was able to offer home death to a greater number of patients, with proximity to caregivers, and respect to their beliefs and values. Our data highlight the importance of early conversations about goals of care, prognostic awareness, and end-of-life preferences, while also reinforcing the need of early referral to a palliative care team.[Table: see text]

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Improved quality of care and reduced healthcare costs at the end-of-life among older people with dementia who received palliative home care: A nationwide propensity score-matched decedent cohort study

Palliative Medicine ◽

10.1177/02692163211019321 ◽

2021 ◽

pp. 026921632110193

Author(s):

Rose Miranda ◽

Tinne Smets ◽

Robrecht De Schreye ◽

Kristof Faes ◽

Nele Van Den Noortgate ◽

...

Keyword(s):

Cohort Study ◽

Home Care ◽

Older People ◽

End Of Life ◽

End Of Life Care ◽

Life Care ◽

Palliative Home Care ◽

People With Dementia ◽

First Time ◽

Care Support

Background: While palliative home care is advocated for people with dementia, evidence of its effectiveness is lacking. Aim: To evaluate the effects of palliative home care on quality and costs of end-of-life care for older people with dementia. Design: Decedent cohort study using linked nationwide administrative databases and propensity score matching. Setting/participants: All home-dwelling older people who died with dementia between 2010 and 2015 in Belgium ( N = 23,670). Exposure: Receiving palliative home care support for the first time between 360 and 15 days before death. Results: Five thousand six hundred and thirty-seven (23.8%) received palliative home care support in the last 2 years of life, of whom 2918 received it for the first time between 360 and 15 days before death. Two thousand eight hundred and thirty-nine people who received support were matched to 2839 people who received usual care. After matching, those using palliative home care support, in the last 14 days of life, had lower risk of hospital admission (17.5% vs 50.5%; relative risk (RR) = 0.21), undergoing diagnostic testing (17.0% vs 53.6%; RR = 0.20) and receiving inappropriate medications, but were more likely to die at home (75.7% vs 32.6%; RR = 6.45) and to have primary care professional contacts (mean 11.7 vs mean 5.2), compared with those who did not. Further, they had lower mean total costs of care in the last 30 days of life (incremental cost:−€2129). Conclusions: Palliative home care use by home-dwelling older people with dementia is associated with improved quality and reduced costs of end-of-life care. Access remains low and should be increased.

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End of Life Care in the Home: Supporting and Sustaining Family Carers

10.26686/wgtn.17003161 ◽

2021 ◽

Author(s):

◽

Jacqueline Rose Bowden-Tucker

Keyword(s):

Palliative Care ◽

End Of Life ◽

Health Care Professionals ◽

End Of Life Care ◽

Qualitative Content Analysis ◽

Palliative Care Service ◽

Ageing Population ◽

Life Care ◽

Family Carers ◽

Home Death

<p>Palliative care services within New Zealand aim to support care for terminally ill people and their family/ whānau, regardless of their disease or place of care. Increasingly consumers prefer that this care and support, including end of life care, is provided in their own home as opposed to hospital or care institutions and current health policies support this trend. The availability of family carers is widely acknowledged as pivotal to home palliation by ensuring physical care and emotional support for the patient is available outside that provided by formal (paid) carers and palliative care professionals entering the home. Literature searched found that family carers feel under prepared for their role and desire more support and information from health care professionals. How to achieve this is less clear. When considered against the backdrop of an ageing population and geographically dispersed families, it is forecast there will be increased incidence of dying patients with complex palliative care needs and a reduced carer population that may make the preference for home death increasingly problematic. Using purposive sampling techniques, six bereaved family carers, who were enrolled with a hospice palliative care service (HPCS) and had supported end of life care of a relative at home, were recruited. Utilising qualitative descriptive methodology this study sought to identify the key conditions under which their caring contribution was sustained. Data collection was by way of semi-structured interviews that were audiotaped and transcribed. Following coding, transcripts underwent qualitative content analysis and revealed three key themes and associated subthemes relating to: perception and acquisition of caring role; sustaining the role; now and looking back. Conclusions drawn from this research offer increased understanding of the enabling factors family carers experienced as supporting them in their role and achieving a home death for their relative.</p>

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End of Life Care in the Home: Supporting and Sustaining Family Carers

10.26686/wgtn.17003161.v1 ◽

2021 ◽

Author(s):

◽

Jacqueline Rose Bowden-Tucker

Keyword(s):

Palliative Care ◽

End Of Life ◽

Health Care Professionals ◽

End Of Life Care ◽

Qualitative Content Analysis ◽

Palliative Care Service ◽

Ageing Population ◽

Life Care ◽

Family Carers ◽

Home Death

<p>Palliative care services within New Zealand aim to support care for terminally ill people and their family/ whānau, regardless of their disease or place of care. Increasingly consumers prefer that this care and support, including end of life care, is provided in their own home as opposed to hospital or care institutions and current health policies support this trend. The availability of family carers is widely acknowledged as pivotal to home palliation by ensuring physical care and emotional support for the patient is available outside that provided by formal (paid) carers and palliative care professionals entering the home. Literature searched found that family carers feel under prepared for their role and desire more support and information from health care professionals. How to achieve this is less clear. When considered against the backdrop of an ageing population and geographically dispersed families, it is forecast there will be increased incidence of dying patients with complex palliative care needs and a reduced carer population that may make the preference for home death increasingly problematic. Using purposive sampling techniques, six bereaved family carers, who were enrolled with a hospice palliative care service (HPCS) and had supported end of life care of a relative at home, were recruited. Utilising qualitative descriptive methodology this study sought to identify the key conditions under which their caring contribution was sustained. Data collection was by way of semi-structured interviews that were audiotaped and transcribed. Following coding, transcripts underwent qualitative content analysis and revealed three key themes and associated subthemes relating to: perception and acquisition of caring role; sustaining the role; now and looking back. Conclusions drawn from this research offer increased understanding of the enabling factors family carers experienced as supporting them in their role and achieving a home death for their relative.</p>

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Impact on place of death in cancer patients: a causal exploration in southern Switzerland

10.21203/rs.3.rs-29758/v1 ◽

2020 ◽

Author(s):

Heidi Kern ◽

Giorgio Corani ◽

David Huber ◽

Nicola Vermes ◽

Marco Zaffalon ◽

...

Keyword(s):

Home Care ◽

End Of Life ◽

Cancer Patients ◽

Family Caregivers ◽

Patient Preference ◽

End Of Life Care ◽

Place Of Death ◽

Life Care ◽

Palliative Home Care ◽

At Home

Abstract Background Most terminally ill cancer patients prefer to die at home, but a majority die in institutional settings. Research questions about this discrepancy have not been fully answered. This study applies artificial intelligence and machine learning techniques to explore the complex network of factors and the cause-effect relationships affecting the place of death, with the ultimate aim of developing policies favouring home-based end-of-life care. Methods A data mining algorithm (a classifier) and a causal probabilistic model (a credal network) for data analysis were developed with information derived from expert knowledge that was merged with data from 116 deceased cancer patients in southern Switzerland. This data set was obtained via a retrospective clinical chart review. Results Dependencies of disease and treatment-related decisions demonstrate an influence on the place of death of 13%. Anticancer treatment in advanced disease prevents or delays communication about the end of life between oncologists, patients and families. Unknown preferences for the place of death represent a great barrier to a home death. A further barrier is the limited availability of family caregivers for terminal home care. The family’s preference for the last place of care has a high impact on the place of death of 51%, while the influence of the patient’s preference is low, at 14%. Approximately one-third of family systems can be empowered by health care professionals to provide home care through open end-of-life communication and good symptom management. Such intervention has an influence on the place of death of 17%. If families express a convincing preference for home care, the involvement of a specialist palliative home care service can increase the probability of home deaths by 24%. Conclusion Concerning death at home, open communication about dying is essential. Furthermore, for the patient preference for home care to be respected, the family’s decision for the last place of care seems key. Early initiation of family-centred palliative care and provision of specialist palliative home care for patients who wish to die at home are suggested. Keywords Cancer; End-of-life care; Palliative Home care; Place of death; Communication; Family caregivers; Patient preference; Bayesian networks; Credal networks; Bayesian classifiers

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Preplanned participation of paramedics in end-of-life care at home: A retrospective cohort study

Palliative Medicine ◽

10.1177/0269216320981713 ◽

2020 ◽

pp. 026921632098171

Author(s):

Leena K Surakka ◽

Minna M Peake ◽

Minna M Kiljunen ◽

Pekka Mäntyselkä ◽

Juho T Lehto

Keyword(s):

Palliative Care ◽

Home Care ◽

End Of Life ◽

End Of Life Care ◽

Home Care Services ◽

Life Care ◽

Care Services ◽

Care At Home ◽

Care Ward ◽

At Home

Background: Paramedics commonly face acute crises of patients in palliative care, but their involvement in end-of-life care is not planned systematically. Aim: To evaluate a protocol for end-of-life care at home including pre-planned integration of paramedics and end-of-life care wards. Design: Paramedic visits to patients in end-of-life care protocol were retrospectively studied. Setting/Participants: All of the patients who had registered for the protocol between 1 March 2015 and 28 February 2017 in North Karelia, Finland, were included in this study. Results: A total of 256 patients were registered for the protocol and 306 visits by paramedic were needed. A need for symptom control (38%) and transportation (29%) were the most common reasons for a visit. Paramedics visited 43% and 70% of the patients in areas with and without 24/7 palliative home care services, respectively ( p < 0.001); while 58% of all the visits were done outside of office hours. Problems were resolved at home in 31% of the visits. The patient was transferred to a pre-planned end-of-life care ward and to an emergency department in 48% and 16% of the cases, respectively. More patients died in end-of-life care wards in areas without (54%) than with (33%) 24/7 home care services ( p = 0.001). Conclusions: Integration of paramedics into end-of-life care at home is reasonable especially in rural areas without 24/7 palliative care services and outside of office hours. The majority of patients can be managed at home or with the help of an end-of-life care ward without an emergency visit.

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Canada’s Evolving Medicare: End-of-Life Care

Journal of Palliative Care ◽

10.1177/0825859720924169 ◽

2020 ◽

pp. 082585972092416

Author(s):

Nicole MacPherson ◽

Terrence Montague ◽

John Aylen ◽

Lesli Martin ◽

Amédé Gogovor ◽

...

Keyword(s):

Palliative Care ◽

Home Care ◽

End Of Life ◽

Health Professionals ◽

End Of Life Care ◽

Life Care ◽

Assisted Death ◽

The Public ◽

Hospice And Palliative Care ◽

Over Time

A challenging issue in contemporary Canadian Medicare is the evolution of end-of-life care. Utilizing data from the 2016 and 2018 Health Care in Canada (HCIC) surveys, this paper compares the support and priorities of the adult public (n = 1500), health professionals (n = 400), and administrators (n = 100) regarding key components for end-of-life care just prior to and post legalization of medical assistance in dying (MAiD) in Canada. In 2016 and 2018, the public, health professionals and administrators strongly supported enhanced availability of all proposed end-of-life care options: pain management, hospice and palliative care, home care supports, and medically assisted death. In 2018, when asked which option should be top priority, the public rated enhanced medically assisted death first (32%), followed by enhanced hospice and palliative care (22%) and home care (21%). Enhanced hospice and palliative care was the top priority for health professionals (33%), while administrators rated enhanced medically assisted death first (26%). Despite legalization and increasing support for MAiD over time, health professionals have increasing fear of legal or regulatory reprisal for personal involvement in medically assisted death, ranging from 38% to 84% in 2018, versus 23% to 42% in 2016. While administrators fear doubled since 2016 (40%-84%), they felt the necessary system supports were in place to easily implement medically assisted death. Optimal management of end-of-life care is strongly supported by all stakeholders, although priorities for specific approaches vary. Over time, professionals increasingly supported MAiD but with a rising fear of legal/regulatory reprisal despite legalization. To enhance future end-of-life care patterns, continued measurement and reporting of implemented treatment options and their system supports, particularly around medically assisted death, are needed.

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Honoring Preferences—The Consistency Between End-of-Life Care and a Veteran’s Goal for Comfort Care

Innovation in Aging ◽

10.1093/geroni/igaa057.2711 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 752-752

Author(s):

Joan Carpenter ◽

Winifred Scott ◽

Mary Ersek ◽

Cari Levy ◽

Jennifer Cohen ◽

...

Keyword(s):

Palliative Care ◽

Logistic Regression ◽

End Of Life ◽

End Of Life Care ◽

Life Care ◽

Multivariate Logistic Regression ◽

Comfort Care ◽

Lower Odds ◽

Medicare Data ◽

Life Sustaining Treatment

Abstract This study examined the alignment between Veterans’ end-of-life care and a Life-Sustaining Treatment (LST) goal “to be comfortable.” It includes Veterans with VA inpatient or community living center stays overlapping July 2018--January 2019, with a LST template documented by January 31, 2019, and who died by April 30, 2019 (N = 18,163). Using VA and Medicare data, we found 80% of decedents with a comfort care goal received hospice and 57% a palliative care consult (compared to 57% and 46%, respectively, of decedents without a comfort care goal). Using multivariate logistic regression, a comfort care goal was associated with significantly lower odds of EOL hospital or ICU use. In the last 30 days of life, Veterans with a comfort care goal had 43% lower odds (AOR 0.57; 95% CI: 0.51, 0.64) of hospitalization and 46% lower odds of ICU use (AOR 0.54; 95% CI: 0.48, 0.61).

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Help Me Understand: Providing Palliative Care to Individuals With Serious Mental Illness

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211010722 ◽

2021 ◽

pp. 104990912110107

Author(s):

Kate L. M. Hinrichs ◽

Cindy B. Woolverton ◽

Jordana L. Meyerson

Keyword(s):

Mental Illness ◽

Palliative Care ◽

End Of Life ◽

Serious Mental Illness ◽

End Of Life Care ◽

Psychosocial Support ◽

Life Care ◽

Case Examples ◽

Increased Risk ◽

Palliative Care Teams

Individuals with serious mental illness (SMI) have shortened life expectancy with increased risk of developing comorbid medical illnesses. They might have difficulty accessing care and can be lost to follow-up due to complex socioeconomic factors, placing them at greater risk of dying from chronic or undiagnosed conditions. This, in combination with stigma associated with SMI, can result in lower quality end-of-life care. Interdisciplinary palliative care teams are in a unique position to lend assistance to those with SMI given their expertise in serious illness communication, values-based care, and psychosocial support. However, palliative care teams might be unfamiliar with the hallmark features of the various SMI diagnoses. Consequently, recognizing and managing exacerbations of SMI while delivering concurrent palliative or end-of-life care can feel challenging. The goal of this narrative review is to describe the benefits of providing palliative care to individuals with SMI with concrete suggestions for communication and use of recovery-oriented language in the treatment of individuals with SMI. The salient features of 3 SMI diagnoses—Bipolar Disorders, Major Depressive Disorder, and Schizophrenia—are outlined through case examples. Recommendations for working with individuals who have SMI and other life-limiting illness are provided, including strategies to effectively manage SMI exacerbations.

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