Palliative care and circumstances of dying in German ALS patients using non‐invasive ventilation

Abstract Due to the expanding use of non-invasive ventilation (NIV) in amyotrophic lateral sclerosis (ALS), the question of enteral nutrition is increasingly raised in NIV users ALS patients. Here, we aimed to determine the prognostic factors for survival after gastrostomy placement in routine NIV users, taking into consideration ventilator dependence. Ninety-two routine NIV users ALS patients, who underwent gastrostomy insertion for severe dysphagia and/or weight loss, were included. We used a Cox proportional hazards model to identify factors affecting survival and compared time from gastrostomy to death and 30-day mortality rate between dependent (daily use ≥ 16 h) and non-dependent NIV users. The hazard of death after gastrostomy was significantly affected by 3 factors: age at onset (HR 1.047, p = 0.006), body mass index < 20 kg/m2 at the time of gastrostomy placement (HR 2.012, p = 0.016) and recurrent accumulation of airway secretions (HR 2.614, p = 0.001). Mean time from gastrostomy to death was significantly shorter in the dependent than in the non-dependent NIV users group (133 vs. 250 days, p = 0.04). The 30-day mortality rate was significantly higher in dependent NIV users (21.4% vs. 2.8%, p = 0.03). Pre-operative ventilator dependence and airway secretion accumulation are associated with worse prognosis and should be key decision-making criteria when considering gastrostomy tube placement in NIV users ALS patients.

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Use of nasal pillows in amiotrophic lateral sclerosis (ALS) patients with high non invasive ventilation (NIV) dependence

10.1183/13993003.congress-2018.pa2381 ◽

2018 ◽

Author(s):

Luana Focaraccio ◽

Giulia Rovere ◽

Roberta Di Tria ◽

Renza Ambrosanio ◽

Elisa Clivati ◽

...

Keyword(s):

Invasive Ventilation ◽

Non Invasive ◽

Non Invasive Ventilation ◽

Als Patients ◽

Lateral Sclerosis

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Non-invasive ventilation effectiveness and the effect of ventilatory mode on survival in ALS patients

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration ◽

10.3109/21678421.2013.855790 ◽

2013 ◽

Vol 15 (1-2) ◽

pp. 55-61 ◽

Cited By ~ 38

Author(s):

Jesus Sancho ◽

Emilio Servera ◽

Capucine Morelot-Panzini ◽

François Salachas ◽

Thomas Similowski ◽

...

Keyword(s):

Invasive Ventilation ◽

Ventilatory Mode ◽

Non Invasive ◽

Non Invasive Ventilation ◽

Ventilation Effectiveness ◽

Als Patients

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The opinion of French pulmonologists and palliative care physicians on non-invasive ventilation during palliative sedation at end of life: a nationwide survey

BMC Palliative Care ◽

10.1186/s12904-021-00755-w ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

V. Guastella ◽

G. Piwko ◽

A. Greil ◽

C. Lambert ◽

A. Lautrette

Keyword(s):

Palliative Care ◽

Respiratory Failure ◽

End Of Life ◽

Palliative Sedation ◽

Invasive Ventilation ◽

Factors Associated ◽

Non Invasive ◽

Non Invasive Ventilation ◽

Care Training ◽

Personal Ethics

Abstract Background Deciding to withdraw non-invasive ventilation (NIV) at end-of-life (EOL) in patients with chronic respiratory failure is a challenge. The European Association for Palliative Care recommends not maintaining artificial therapies that could prolong life during palliative sedation (PS) at EOL. The aim of this survey was to assess palliative care physicians’ and pulmonologists’ opinion on withdrawing or maintaining NIV in patients with chronic respiratory failure during PS at EOL. Methods From April to May 2019, we performed a prospective survey among pulmonologists (n = 1545) and palliative care physicians (n = 631) in France to determine the prevalence of opinion in favour of maintaining NIV and identify the factors associated with opinion in favour of withdrawing or maintaining NIV with multiple logistic regression. Results A total of 457 participants were enrolled comprising 202 pulmonologists and 255 palliative care physicians. An opinion in favour of maintaining NIV was found in 88 (19.3 95%CI [15.7; 23.2]) physicians comprising 57 (28.2%) pulmonologists and 31 (12.2%) palliative care physicians (p < 0.001). The factors associated with an opinion in favour of maintaining NIV were spending time looking for advanced directives (AD) in the patient’s file (odds ratio (OR): 6.54, 95%CI [2.00; 21.32], p = 0.002) and personal ethics of physicians (OR: 17.97, 95%CI [9.52; 33.89], p < 0.001). The factor associated with an opinion in favour of withdrawing NIV was palliative care training (OR: 0.31, 95%CI [0.16; 0.60], p < 0.001). The three main reasons in favour of maintaining NIV among the nine identified were emotional comfort for close relatives, reducing discomfort of dyspneoa and anticipation of suffocation. Conclusion In France, around 20% of pulmonologists and palliative care physicians declared an opinion in favour of maintaining NIV during PS at EOL because of their personal ethics and spending time looking for AD, if any, in the patient’s file. Palliative care training can stimulate reflection help foster a change of opinion about practices, especially in the case of patients with NIV during PS at EOL.

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Continuing Non-Invasive Ventilation During Amyotrophic Lateral Sclerosis-Related Hospice Care Is Medically, Administratively, and Financially Feasible

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909120982291 ◽

2020 ◽

pp. 104990912098229

Author(s):

Philip J. Choi ◽

Michael Murn ◽

Roberta Turner ◽

Richard Bedlack

Keyword(s):

Amyotrophic Lateral Sclerosis ◽

Length Of Stay ◽

Cost Analysis ◽

Rating Scale ◽

Academic Medical Center ◽

Invasive Ventilation ◽

Non Invasive ◽

Non Invasive Ventilation ◽

Als Patients ◽

Lateral Sclerosis

Background: Amyotrophic Lateral Sclerosis (ALS) is a terminal neuromuscular disease with patients dying within 3-5 years of diagnosis. Most patients choose to forego invasive life sustaining measures. Timing of hospice referral can be challenging given the advancement of non-invasive ventilation (NIV) technology. Objective: To describe the characteristics of patients enrolled in hospice from an ALS clinic at 1 academic medical center and to perform a cost analysis for patients who remained on ventilator support. Methods: Retrospective cross-sectional study of patients enrolled in hospice over a 2-year period. Clinical characteristics included ALS Functional Rating Scale Revised (ALSFRS-R) score, Forced Vital Capacity (FVC), use of NIV and mechanical insufflation-exsufflation (MIE), riluzole use, and length of stay in hospice. A cost analysis was performed for patients enrolled in Duke Home Care and Hospice. Results: 85 of 104 patients who died were enrolled in hospice. Median days enrolled in hospice was 84. Patients who continued on NIV had similar hospice length of stay as those on no respiratory support (88 versus 80 days, p = 0.83). Bulbar patients had a trend toward shorter length of stay in hospice than limb onset patients (71 versus 101 days, p = 0.49). Cost analysis showed that hospice maintained a mean net operating revenue of $3234.50 per patient who continued on NIV. Conclusions: Hospice referrals for ALS patients on NIV can be challenging. This study shows that even with continued NIV use, most ALS patients die within the expected 6 months on home hospice, and care remains cost effective for hospice agencies.

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Predicting Non-invasive Ventilation in ALS Patients Using Stratified Disease Progression Groups

2018 IEEE International Conference on Data Mining Workshops (ICDMW) ◽

10.1109/icdmw.2018.00113 ◽

2018 ◽

Cited By ~ 3

Author(s):

Sofia Pires ◽

Marta Gromicho ◽

Susana Pinto ◽

Mamede Carvalho ◽

Sara C. Madeira

Keyword(s):

Disease Progression ◽

Invasive Ventilation ◽

Non Invasive ◽

Non Invasive Ventilation ◽

Als Patients

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Patient-Ventilator Asynchrony In Amyotrophic Lateral Sclerosis (ALS) Patients Beginning Nocturnal Non Invasive Ventilation (NNIV) For FVC

10.1164/ajrccm-conference.2011.183.1_meetingabstracts.a5276 ◽

2011 ◽

Author(s):

Amy D. Atkeson ◽

Ravi Persaud ◽

Arindam RoyChoudhury ◽

Gabriela Harrington-Moroney ◽

Hiroshi Mitsumoto ◽

...

Keyword(s):

Amyotrophic Lateral Sclerosis ◽

Invasive Ventilation ◽

Non Invasive ◽

Non Invasive Ventilation ◽

Als Patients ◽

Lateral Sclerosis

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Non-invasive ventilation in the palliative care of patients with chronic obstructive pulmonary disease: a scoping review protocol

BMJ Open ◽

10.1136/bmjopen-2020-048344 ◽

2021 ◽

Vol 11 (12) ◽

pp. e048344

Author(s):

Simen A Steindal ◽

Kristin Hofsø ◽

Hanne Aagaard ◽

Kari L Mariussen ◽

Brith Andresen ◽

...

Keyword(s):

Chronic Obstructive Pulmonary Disease ◽

Palliative Care ◽

Scoping Review ◽

Advisory Board ◽

Chronic Obstructive ◽

Invasive Ventilation ◽

Obstructive Pulmonary Disease ◽

Non Invasive ◽

Copd Patients ◽

Non Invasive Ventilation

IntroductionPatients with advanced chronic obstructive pulmonary disease (COPD) experience a great symptom burden. Breathlessness is a very frequently reported symptom that negatively affects all aspects of daily life and could lead to fear of dying. Non-invasive ventilation (NIV) could be an important palliative measure to manage breathlessness in patients with advanced COPD. We decided to conduct a scoping review to attain an overview of the existing research and to identify knowledge gaps. This scoping review aims to systematically map published studies on the use of NIV in the palliative care of COPD patients, including the perspectives and experiences of patients, families and healthcare professionals.Methods and analysisThis scoping review will employ the framework of Arksey and O’Malley. The reporting will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. A comprehensive and systematic search strategy will be developed in cooperation with an experienced librarian. Database searches will be conducted in AMED, PEDro, Embase, CINAHL, PsycInfo and MEDLINE in February 2021. Pairs of authors will independently assess studies’ eligibility and extract data using a standardised data-charting form. The data will be inductively summarised and organised thematically. The results will be discussed with an advisory board consisting of nurses and physicians from respiratory and intensive care units.Ethics and disseminationApproval for the workshop with the advisory board has been attained from the Norwegian Centre for Research Data (480222), and approval will be attained from the Personal Data Protection Officers of the participating hospitals. All advisory board participants will sign an informed written consent before participation. The results could contribute to developing the body of evidence on the use of NIV in the palliative care of COPD patients and serve to identify directions for future research.

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