Withdrawal of Invasive Home Mechanical Ventilation in Patients with Advanced Amyotrophic Lateral Sclerosis: Ten Years of Danish Experience

Dreyer, Pia; Felding, Michael; Klitnæs, Charlotte; Lorenzen, Charlotte Kirkegård

doi:10.1089/jpm.2011.0133

Cited by 46 publications

(45 citation statements)

References 23 publications

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“…The ALS patient and family caregiver commitment to one another has been reported in other studies on decision-making in ventilation (26)(27)(28). In a Danish study on withdrawal of invasive ventilation (26), the reason for request by patients for withdrawal was a general loss of meaning in their life. Interviews conducted with family caregivers after withdrawal identified that even though family caregivers were apprehensive about the death scenario, they supported procedures in accordance with patients' wishes.…”

Section: Life-prolonging and Life-ending Interventionsmentioning

confidence: 80%

“…Family can directly or indirectly impact on whether patients request, accept or decline interventions (14,16,17,22,27,28,61,62). Family caregivers engage with patients in advance care planning (30,(33)(34)(35) and can support patients' expressed wishes for care (26,63). Although patients resist becoming a burden on family (8,25,28,33,62), some may also prefer to die at home with the support of family (17,32,33).…”

Section: Discussionmentioning

confidence: 99%

“…invasive and non-invasive ventilation, gastrostomy) and in life-ending interventions (i.e. physician-assisted suicide, withdrawal of invasive ventilation) (13)(14)(15)(16)(17)(18)(19)(20)(21)(22)(23)(24)(25)(26)(27)(28). A German-based prospective study on patient medical decision-making in ALS (13) showed that neither moderate cognitive impairment nor behavioural change (behavioural change as rated by the caregiver) were associated with patients' use or decline of gastrostomy and ventilation or with their desire for hastened death.…”

Section: Life-prolonging and Life-ending Interventionsmentioning

confidence: 99%

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Decision-making among patients and their family in ALS care: a review

Foley

Hynes

2017

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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Greater attention to family member roles beyond the primary caregiver role is needed. Strategies that integrate cognitively-impaired patients into the family decision-making process require investigation. Identification of the domains in which ALS patients and their family members support one another in the decision-making process could facilitate the development of patient/family decision-making tools in ALS care.

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Section: Life-prolonging and Life-ending Interventionsmentioning

confidence: 80%

Section: Discussionmentioning

confidence: 99%

Section: Life-prolonging and Life-ending Interventionsmentioning

confidence: 99%

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Decision-making among patients and their family in ALS care: a review

Foley

Hynes

2017

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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“…It should be noted that the ALV (that is artificial prolongation of life at ALS) is not indicated to elderly ALS patients, as well as in case of frontotemporal cognitive impairments, psychiatric disorders, expressed toxic abuses, since it is not possible to determine clearly a patient's determination for this action and document a will specifying conditions for disconnection of these patients from the apparatus in the future. 10 It is necessary to mention that the refusal from the use of aggressive ALS treatment methods and, sometimes, repeated visits of doctors and administration of drugs, was always seen in families of ALS patients with endogenous psychiatric disorders, frontotemporal cognitive impairments or dementia and psychiatric disorders, however, members of these families were either adapted (in case of presence of premorbid psychiatric peculiarities in ALS patients) or readapted (at development of psychiatric peculiarities in patients within the frame of this disease) to this difficult situation.…”

Section: Resultsmentioning

confidence: 99%

Psychiatric disorders and their medical-social consequences in patients with amyotrophic lateral sclerosis and members of their families

Levitsky¹,

Levitsky²,

Gilod³

2019

JNSK

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118 ALS patients and 97 members of their families were examined. All patients and relatives were observed by psychiatrists. The assessment was carried out on the Hamilton Depression Scale (for patients and members of their families) and the scale of frontotemporal dementia (for patients). Psychiatric disorders were revealed in 101 ALS patients (85%) and in 51 members of their families (52.5%) (Significantly more frequently in ALS patients, p<0.05). The spectrum of situational disorders in ALS patients was represented relatively evenly with insignificant predominance of situational depression. Rare cases of combination of ALS with endogenous psychiatric disorders were described. In 33 patients (28%), frontotemporal cognitive impairments reaching the level of dementia were observed in 4.2% of cases. Among members of families of ALS patients, only situational psychiatric disorders with obvious predominance of anxiety (28%, p<0.05) were revealed. 49 ALS patients (41.5%) and 80 members of their families (82.4%) suffered from habitual intoxications (significantly more frequently in family members, p<0.05). High share of anxiety disorders leads to the refusal from cooperation with professional physicians (73-76%), rejection of aggressive treatment methods (74.5%), addressing to cheaters and burden connected with unjustified material expenses (29.6% of cases). Constant nursing of families of ALS patients by neurological and psychotherapeutical services with involvement of psychiatrists and narcologists in individual cases is recommended, which could provide increase of the number of life-saving procedures at ALS and improvement of the quality of life of patients and members of their families.Citation: Levitsky GN, Psychiatric disorders and their medical-social consequences in patients with amyotrophic lateral sclerosis and members of their families.Citation: Levitsky GN, Psychiatric disorders and their medical-social consequences in patients with amyotrophic lateral sclerosis and members of their families.

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“…The involvement of respiratory muscles leads to respiratory dysfunction, which is a major cause of death in ALS (1). Many reports have indicated that noninvasive ventilation (NIV) increases survival and quality of life (QOL) in ALS patients (2)(3)(4)(5)(6)(7)(8)(9)(10)(11)(12)(13). Therefore, respiratory function assessment is important for monitoring disease progression and determining the optimal timing for the initiation of NIV.…”

Section: Introductionmentioning

confidence: 99%

Respiratory Insufficiency with Preserved Diaphragmatic Function in Amyotrophic Lateral Sclerosis

et al. 2014

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Objective We performed a longitudinal study to elucidate the correlation between respiratory insufficiency and respiratory biomarkers, including diaphragmatic compound muscle action potential (DCMAP), at the initiation of noninvasive ventilation (NIV) in patients with amyotrophic lateral sclerosis (ALS). Methods The patients were assessed at least every six months. Additional assessments were performed at the start of respiratory therapy when the patients met the criteria for the initiation of NIV. Each assessment consisted of a full neurological examination, a phrenic nerve conduction study, respiratory function tests, and nocturnal pulsed oximetry. Patients We enrolled 43 patients with either definite or probable ALS as defined by the revised El Escorial criteria. Results The patients were divided into two groups according to the timing of the initiation of respiratory therapy. Seventeen patients (group A) met the criteria for NIV initiation when their DCMAP remained normal. Twenty-six patients (group B) met the criteria when their DCMAP decreased below normal limits. Although respiratory function parameters were significantly worse in group B compared with group A at NIV initiation, more than 80% of the patients in both groups developed nocturnal desaturation during sleep. Conclusion DCMAP is not always a reliable indicator for determining the optimal timing for NIV initiation during the progression of respiratory insufficiency in ALS. Physicians should be aware of the risk of respiratory insufficiency during sleep in patients with ALS.

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Withdrawal of Invasive Home Mechanical Ventilation in Patients with Advanced Amyotrophic Lateral Sclerosis: Ten Years of Danish Experience

Abstract: Patients' requests for the withdrawal of IHMV in advanced stage ALS was related to a perceived "loss of meaning in life." Termination of treatment was performed under deep sedation as a medically, legally, and ethically justified procedure.

Cited by 46 publications

References 23 publications

Decision-making among patients and their family in ALS care: a review

Decision-making among patients and their family in ALS care: a review

Psychiatric disorders and their medical-social consequences in patients with amyotrophic lateral sclerosis and members of their families

Respiratory Insufficiency with Preserved Diaphragmatic Function in Amyotrophic Lateral Sclerosis

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