Multidisciplinary Team-Based Palliative Care for Heart Failure and Food Intake at the End of Life

Traditionally, patients with end-stage heart failure (HF) have rarely been involved in end-of-life care (EOLC) discussions in Japan. The purpose of this study was to examine the impact of HF-specific palliative care team (HF-PCT) activities on EOLC discussions with patients, HF therapy and care, and food intake at the end of life. We retrospectively analyzed 52 consecutive patients with HF (mean age, 70 ± 15 years; 42% female) who died at our hospital between May 2013 and July 2020 and divided them into two groups: before (Era 1, n = 19) and after (Era 2, n = 33) the initiation of HF-PCT activities in June 2015. Compared to Era 1, Era 2 showed a decrease in invasive procedures, an increase in opioid and non-intubating sedative use for symptom relief, improved quality of meals at the end of life, and an increase in participation in EOLC discussions. The administration of artificial nutrition in the final three days was associated with non-ischemic cardiomyopathy etiology, the number of previous hospitalizations for HF, and multidisciplinary EOLC discussion support. HF-PCT activities may provide an opportunity to discuss EOLC with patients, reduce the burden of physical and psychological symptoms, and shift the goals of end-of-life nutritional intake to ensure comfort and quality of life.

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Impact of end-of-life respiratory modalities on quality of dying and death and symptom relief in patients with interstitial lung disease: a multicenter descriptive cross-sectional study

10.21203/rs.3.rs-885694/v1 ◽

2021 ◽

Author(s):

Takafumi Koyauchi ◽

Yuzo Suzuki ◽

Kazuki Sato ◽

Hironao Hozumi ◽

Masato Karayama ◽

...

Keyword(s):

Interstitial Lung Disease ◽

Lung Disease ◽

End Of Life ◽

Real World ◽

Symptom Relief ◽

Quality Of Dying ◽

Real World Setting ◽

End Stage ◽

The Impact

Abstract Background: Respiratory modalities that applied at end of life may affect burden of distressing symptoms and quality of dying and death (QODD) among patients with end-stage interstitial lung disease (ILD); however, there have been few studies into respiratory modalities applied to these patients near death. We hypothesized that high-flow nasal cannula (HFNC) may contribute to improved QODD and symptom relief in patients with end-stage ILD.Objectives: This multicenter study examined the proportion of end-of-life respiratory modalities in a real-world setting and explored its impact on QODD and symptom relief among patients dying with ILD.Methods: Consecutive patients with ILD who died in four participating institutions in Japan from 2015 to 2019 were identified and divided into four groups according to end-of-life respiratory modality: conventional oxygen therapy (COT), HFNC, non-invasive ventilation (NIV), and invasive mechanical ventilation (IMV). In addition, a mail survey was performed to quantify the QODD and symptom relief at their end of life from a bereaved family’s perspective. QODD and symptom relief were quantified using the Good Death Inventory (GDI) for patients with a completed bereavement survey. The impact of end-of-life respiratory modalities on QODD and symptom relief was measured by multivariable linear regression using COT as a reference.Results: Among 177 patients analyzed for end-of-life respiratory modalities, 80 had a completed bereavement survey. The most common end-of-life respiratory modality was HFNC (n=76, 42.9%), followed by COT (n=62, 35.0%), NIV (n=27, 15.3%), and IMV (n=12, 6.8%). Regarding the place of death, 98.7% of patients treated with HFNC died outside the intensive care unit. Multivariable regression analyses revealed patients treated with HFNC had a higher GDI score for QODD [partial regression coefficient (B)=0.46, 95% CI: 0.07–0.86] and domain score related to symptom relief (B=1.37, 95% CI: 0.54–2.20) than those treated with COT. Conclusion: HFNC was commonly used in patients with end-stage ILD in real-world setting and was associated with higher QODD and better symptom relief. HNFC may contribute to improved QODD and symptom relief in these patients.

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Healing at the End of Life: The Voice of the Patient

International Journal of Whole Person Care ◽

10.26443/ijwpc.v1i1.53 ◽

2014 ◽

Vol 1 (1) ◽

Author(s):

Cory Ingram

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Lived Experience ◽

End Of Life ◽

Life Story ◽

Patient Centered ◽

Whole Person ◽

Centered Care ◽

The Impact

In palliative care we have the privilege to care for seriously ill people and their families. Some people value capturing their life story or illness journey on film. I have been fortunate to have been invited into the lives of many people close the end of life for a heartfelt conversation.On an interactive iPad incorporated in the poster, the recorded narrative of patients and one bereft spouse the poster audience will experience the lived experience of people close to the end of life as they reflect on their lives. The narratives will demonstrate how each lived with a new found improved quality of life in the face of increasing symptoms, declining functioning and the approaching end of life; otherwise known as healing. Topics of healing and quality of life, patient-centered care, dignity, human development, spirituality and love will be the focus of their stories. The stories lay bare the very practical, emotional, existential, and personal experience central to our provision of whole person care through palliative care. The poster audience will experience a renewed sense of the impact of a dedicated approach to whole person care as experienced through those on the receiving end.

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Palliative Care Unit at Home: Impact on Quality of Life in Cancer Patients at the End of Life in a Rural Environment

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211038303 ◽

2021 ◽

pp. 104990912110383

Author(s):

Maria Elena Iriarte Moncho ◽

Vicente Palomar-Abril ◽

Teresa Soria-Comes

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

End Of Life ◽

Cancer Patients ◽

Hospital Admissions ◽

Cox Regression ◽

Medical Department ◽

The Impact ◽

At Home

Introduction: Advanced cancer is accompanied by a substantial burden of symptoms, and palliative care (PC) plays an essential role, especially at the end of life (EOL). In fact, a comprehensive PC through Home Palliative Care Units (HPCU) has been associated with reducing potentially aggressive care at the EOL. We aim to study the impact of HPCU on the quality of assistance of cancer patients at Alcoy Health Department. Methods: A retrospective study was conducted including patients diagnosed with terminal cancer at the Medical Department of Hospital Virgen de los Lirios who died between January 2017 and December 2018. The Multivariate Cox regression model was used to assess the impact of HPCU assistance on the quality of life indicators. Results: 388 patients were included. The median age was 71 years; 65% patients were male, and 68% presented with a 0-2 score on the ECOG scale. On the multivariate analysis, a lack of assistance by HPCU was associated with a higher risk of consulting in the emergency department (OR = 1.29, 95% CI: 1.02-1.67), of hospital admissions (OR = 4.72, 95% CI: 2.45-9.09), a higher probability of continuing active treatment (OR = 2.59, 95% CI: 1.44-4.67), and a greater probability of dying in hospital (OR = 6.52, 95% CI: 3.78-11.27). Conclusions: Patients receiving HPCU assistance have a lower number of emergency room visits and hospital admissions, and are more likely to die at home. Taken together, these results support the relevance of HPCU providing a high quality attention of cancer patients.

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Quality of dying and death in patients with interstitial lung disease compared with lung cancer: an observational study

Thorax ◽

10.1136/thoraxjnl-2020-215917 ◽

2020 ◽

pp. thoraxjnl-2020-215917

Author(s):

Takafumi Koyauchi ◽

Yuzo Suzuki ◽

Kazuki Sato ◽

Hironao Hozumi ◽

Masato Karayama ◽

...

Keyword(s):

Lung Cancer ◽

Decision Making ◽

Palliative Care ◽

Interstitial Lung Disease ◽

Lung Disease ◽

End Of Life ◽

Symptom Relief ◽

Mail Survey ◽

Quality Of Dying

BackgroundThere is limited knowledge regarding the quality of dying and death (QODD) and end-of-life interventions in patients with interstitial lung disease (ILD). Hence, differences in QODD and end-of-life interventions between patients with ILD and those with lung cancer (LC) remain poorly understood.MethodsThe primary aim of this study was to explore the differences in QODD and end-of-life interventions among patients dying with ILD versus those dying with LC. We performed a mail survey to quantify the QODD of a bereaved family’s perspective using the Good Death Inventory (GDI) score. Moreover, we examined the end-of-life interventions by medical chart review.ResultsOf 361 consecutive patients analysed for end-of-life interventions, 167 patients whose bereaved families completed questionnaires were analysed for QODD. Patients with ILD had lower GDI scores for QODD than those with LC (p=0.04), particularly in domains related to ‘physical and psychological distress relief’ and ‘prognosis awareness and participation in decision making’ (p=0.02, respectively). In end-of-life interventions, patients with ILD were less likely to receive specialised palliative care services (8.5% vs 54.3%; p<0.001) and opioids (58.2% vs 73.4%; p=0.003). Additionally, lower frequencies of participation of patients with ILD in end-of-life discussion were also observed (40.8% vs 62.4%; p=0.007).ConclusionPatients with ILD had lower QODD and poorer access to palliative care and decision making than those with LC. Additional efforts to improve QODD in patients with ILD, particularly in symptom relief and decision-making processes, are urgently warranted.

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The Impact of Teaching Prognostication at the End of Life: A Pre–Post Interventional Study

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909117721697 ◽

2017 ◽

Vol 35 (3) ◽

pp. 473-477 ◽

Cited By ~ 2

Author(s):

Alexandria Bear ◽

Tucker Keuter ◽

Jayshil J. Patel

Keyword(s):

Palliative Care ◽

End Of Life ◽

Posttest Score ◽

Comfort Level ◽

House Staff ◽

Optimal Time ◽

Post Intervention ◽

Significant Difference ◽

End Stage ◽

The Impact

Background: Providing accurate and valid prognostic information significantly influences end-of-life care. Disclosing a poor prognosis can be among the most difficult of physician responsibilities, thus having appropriate knowledge during training is crucial for appropriate prognostication. Objective: To provide internal medicine (IM) house staff with a pre- and posteducational survey to determine their ability to accurately prognosticate 5 common end-stage diseases. Design: We conducted a pre- and posteducational intervention survey-based study. A preintervention survey was administered to IM postgraduate year 1 (PGY-1) and PGY-2-4 house staff. The survey consisted of case scenarios for 5 common end-stage diseases, containing 1 question on comfort level and 2 on prognostication (totaling 10 points). A 30-minute educational intervention was presented immediately after the initial survey. The same survey was readministered 4 weeks thereafter. An identical survey was administered once to palliative care faculty. Results: Forty house staff completed pre- and posteducational surveys. Eight palliative care faculty completed the survey. No difference was found between all house staff pre- and postscores (mean 2.70 [1.45] vs 2.78 [1.59], P = .141). There was no significant difference between PGY-1 and PGY-2-4 pretest scores (mean 2.63 [1.71] vs 2.81 [1.42], P = .72). The PGY-2-4 posttest score was significantly greater than PGY-1 posttest score (3.38 [1.58] vs 2.38 [1.58], P = .05). Total house staff posttest score was significantly lower than gold standard palliative care faculty (mean 4.71 [1.98] vs 2.78 [1.59], P = .006). Conclusions: Our pre–post intervention survey-based study demonstrates no significant increases in all house staff scores. The PGY-2-4 postintervention scores improved significantly. We speculate the optimal time for prognostication education may be after the PGY-1 year when house staff have had sufficient exposure to common conditions.

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Role of Physical Therapy Intervention in Patients With Life-Threatening Illnesses

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909115623246 ◽

2016 ◽

Vol 34 (2) ◽

pp. 186-196 ◽

Cited By ~ 13

Author(s):

Kaitlyn Putt ◽

Kelli Anne Faville ◽

David Lewis ◽

Kevin McAllister ◽

Maria Pietro ◽

...

Keyword(s):

Palliative Care ◽

Physical Therapy ◽

End Of Life ◽

Well Being ◽

Palliative Care Setting ◽

The Impact ◽

Therapy Intervention ◽

Physical Therapy Intervention

Background: Physical therapy encompasses the skilled treatment and care for patients across the life span through a multitude of different practice settings. This includes caring for individuals within end-of-life or palliative care settings. The goal of treatment in this stage of care is to relieve physical, social, psychological, and spiritual suffering in order to improve overall quality of life in patients with terminal illnesses. There has been limited research conducted to investigate the utilization of physical therapy interventions in palliative care settings. Purpose: The purpose of this study was to contribute to the current research involving physical therapy and end-of-life care in terms of its efficacy, value, and how this value is perceived by patients and their caregivers. Methods: This was completed by independently screening and reviewing the studies that were published between the years 1994 and 2014 and related to this topic. The databases and journals searched included CINAHL, PUBMED, MEDLINE, Cochrane, PEDro, the Journal of Palliative Care, the American Journal of Hospice and Palliative Medicine, and Google Scholar. Results: Thirteen qualitative articles were selected which met all inclusion criteria and discussed the role of physical therapy intervention in the palliative care setting. Methodological quality of articles were assessed using the QASP, scale and their findings were summarized and presented in table format. Conclusion: These articles support the utilization of physical therapy in palliative care settings and emphasizes the impact of physical therapy on improving patients’ physical, social, and emotional well-being.

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Challenges in end-of-life dementia care

Evidence-Based Mental Health ◽

10.1136/eb-2018-102889 ◽

2018 ◽

Vol 21 (3) ◽

pp. 107-111 ◽

Cited By ~ 3

Author(s):

Anne A Fetherston ◽

Grace Rowley ◽

Charlotte L Allan

Keyword(s):

Palliative Care ◽

End Of Life ◽

Ethical Issues ◽

Artificial Nutrition ◽

Detailed Knowledge ◽

Care Planning ◽

Subjective Experiences ◽

Open Communication ◽

Chronic Progressive Disease ◽

End Stage

Dementia is a chronic, progressive disease that is now much more widely recognised and treated. Patients with dementia may require palliative care when they reach the end stage of their illness, or they may have mild–moderate cognitive symptoms comorbid with a life-limiting illness. The variety of presentations necessitates a highly individual approach to care planning, and patients should be encouraged to set their own goals and contribute to advanced care planning where possible. Assessment and management of distressing symptoms at the end of life can be greatly helped by a detailed knowledge of the individuals’ prior wishes, interdisciplinary communication and recognition of changes in presentation that may result from new symptoms, for example, onset of pain, nutritional deficits and infection. To navigate complexity at the end of life, open communication that involves patients and families in decisions, and is responsive to their needs is vital and can vastly improve subjective experiences. Complex ethical dilemmas may pervade both the illness of dementia and provision of palliative care; we consider how ethical issues (eg, providing care under restraint) influence complex decisions relating to resuscitation, artificial nutrition and treatment refusal in order to optimise quality of life.

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Interpreting in palliative care: A systematic review of the impact of interpreters on the delivery of palliative care services to cancer patients with limited English proficiency.

Journal of Clinical Oncology ◽

10.1200/jco.2014.32.31_suppl.123 ◽

2014 ◽

Vol 32 (31_suppl) ◽

pp. 123-123 ◽

Cited By ~ 2

Author(s):

Milagros Silva ◽

Margaux Genoff ◽

Alexandra Zaballa ◽

Stacy Marie Stabler ◽

Francesca Gany ◽

...

Keyword(s):

Systematic Review ◽

Palliative Care ◽

Quality Of Care ◽

End Of Life ◽

Limited English Proficiency ◽

Goals Of Care ◽

Care Services ◽

Palliative Care Services ◽

The Impact

123 Background: According to the 2011 U.S. Census 60% of people living in the U.S. speak a language other than English at home, and of these approximately 40% have limited English proficiency (LEP). Language barriers can affect the health outcomes of LEP patients and the use of trained interpreters can improve patient-physician communication. Since effective communication is the cornerstone of delivering adequate palliative care, a systematic review was conducted to determine the impact of interpreters on the delivery of palliative care services to LEP patients with cancer. Methods: We conducted a systematic review of the literature search in all available languages of 6 databases from 1966 and 2013. Studies evaluated interpreter interventions for LEP patients receiving palliative care services. Of 38 references, 11 articles were found by multiple reviewers to meet inclusion criteria. Data were collected on the study design, size, comparison groups, outcomes, and interpreter characteristics. Results: A total of 6 qualitative and 5 quantitative studies assessed the use of interpreters. All studies found that the quality of care provided to LEP patients receiving palliative services is affected by communication. Most studies showed that when no trained interpreters were used, LEP patients and families had inadequate understanding about their diagnosis or prognosis during goals of care conversations, and worse symptom management at end of life including pain and anxiety. Half of the studies concluded that trained interpreters are not utilized adequately and several suggested that pre-meetings between clinicians and interpreters are important to discuss topics and terminology to be used during goals of care conversations. Conclusions: Published studies show worse outcomes during end of life care and goals of care discussions when trained interpreters are not used. Moreover, trained interpreters are not being used appropriately in the field. More clinically relevant studies are needed to improve the quality of care provided to LEP patients and families receiving palliative services.

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The role of the dietitian in palliative care

10.1093/med/9780198821328.003.0023 ◽

2021 ◽

pp. 219-224

Author(s):

Samantha Cushen ◽

Aoife Ryan

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

End Of Life ◽

End Of Life Care ◽

Nutritional Support ◽

Symptom Relief ◽

Nutritional Therapy ◽

Life Care

In palliative care, the aims of nutritional support change with an emphasis on quality of life and symptom relief as opposed to active nutritional therapy. The concept of palliative nutrition has evolved to include all aspects of the palliative trajectory, not just end of life care, with each stage of the trajectory having different nutritional goals. The role of the dietitian in palliative care is a topic that until recently remained relatively unexplored. This chapter introduces the concept of diet as a potential survivorship intervention as opposed to nourishment only and contextualizes the dietitian’s role in palliative care.

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The Impact of Obesity in End of Life Care in Patients With End Stage Liver Disease: An Observational Study

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909120978768 ◽

2020 ◽

pp. 104990912097876

Author(s):

Kavitha Subramoney ◽

Eric Orman ◽

Amy W. Johnson ◽

Areeba Kara

Keyword(s):

Palliative Care ◽

Liver Disease ◽

End Of Life ◽

Obese Patients ◽

Referral Rates ◽

End Stage Liver Disease ◽

Comorbidity Index ◽

End Stage ◽

Hospice And Palliative Care ◽

The Impact

Background: Both obesity and end stage liver disease (ESLD) are increasing. Obesity’s impact on hospice and palliative care in patients with ESLD is unknown. Methods: We retrospectively evaluated patients admitted to an academic, Midwestern, tertiary center between January 2016 and May 2019 with a diagnosis of ESLD. Body Mass Index and MELD Na were calculated for each patient’s first admission during the study period. Patients with MELD Na scores ≥ 21 or 18-20 with additional criteria were considered potentially eligible for hospice and palliative care referrals. Results: Of 3863 patients admitted with ESLD, 1556 (40%) were potentially eligible for hospice and palliative care referrals. Of these, 703 (45%) were obese. Comorbidity burden was higher in obese patients (15.6% of obese patients had a Charlson Comorbidity Index ≥ 5, while 5% of non-obese patients had a comorbidity index of ≥ 5 (p < 0.001). Referral rates to hospice and palliative services in obese patients were 10.1% and 16.4% respectively. Hospice and palliative referral rates among non-obese patients were similar (10.1% and 15.5%). Among patients who died within 6 months of the first hospitalization, the mean time to referral to hospice or palliative care from index admission was longer in obese patients. Conclusion: Obesity is common in patients hospitalized with ESLD who may be approaching the end of life. Referral rates to hospice and palliative care services are low and similar regardless of BMI and despite higher co-morbidity burdens in obese patients. Obesity may delay referrals to hospice and palliative care.

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