End-of-life management in patients with amyotrophic lateral sclerosis

@article{Connolly2015EndoflifeMI,
  title={End-of-life management in patients with amyotrophic lateral sclerosis},
  author={Sheelah Connolly and Miriam Galvin and Orla Hardiman},
  journal={The Lancet Neurology},
  year={2015},
  volume={14},
  pages={435-442}
}
Most health-care professionals are trained to promote and maintain life and often have difficulty when faced with the often rapid decline and death of people with terminal illnesses such as amyotrophic lateral sclerosis (ALS). By contrast, data suggest that early and open discussion of end-of-life issues with patients and families allows time for reflection and planning, can obviate the introduction of unwanted interventions or procedures, can provide reassurance, and can alleviate fear… 
Ethical considerations and palliative care in patients with amyotrophic lateral sclerosis: A review.
TLDR
Healthcare professionals must develop communication skills that help patients cope with the inexorable progression of the disease and the inevitability of death, as ALS patients generally welcome the opportunity to discuss end-of-life issues with their physicians.
Palliative Care and End of Life Care
In the absence of effective disease-modifying drugs, the emphasis in all of the neurodegenerative conditions is on symptom management and maintenance of quality of life for both patients and carers.
Elucidating the End-of-Life Experience of Persons With Amyotrophic Lateral Sclerosis
TLDR
A comprehensive multidatabase search retrieved 31 qualitative research articles that addressed persons with end-of-life experiences with ALS and represented emergence of 3 themes significant to persons with ALS: decisions for life-sustaining support, coping and fear of what is to come, and communication with providers.
Supportive and symptomatic management of amyotrophic lateral sclerosis
TLDR
The basis for supportive management is shifting from expert consensus guidelines towards an evidence-based approach, which encourages the use of effective treatments and could reduce the risk of harm caused by ineffective or unsafe interventions.
Palliative care in amyotrophic lateral sclerosis
TLDR
The palliative management of patients with ALS remains problematic, tending to be off ered in a heterogeneous and ad-hoc way worldwide, and the need to develop clear frameworks and guidelines is emphasized through establishment of global patient registries.
End-of-life care after the legal introduction of advance directives: A qualitative study involving healthcare professionals and family caregivers of patients with amyotrophic lateral sclerosis
TLDR
The introduction of advance directives by law has not been sufficient to improve end-of-life care and the organization of healthcare services needs to be improved and clearer procedures have to be implemented and shared with patients and families.
Experience matters: neurologists’ perspectives on ALS patients’ well-being
TLDR
Experienced neurologists as well as neurologists with experience in palliative care are able to better empathize with patients with a fatal illness such as ALS and support important decision processes.
Psychological Intervention in Amyotrophic Lateral Sclerosis: Suggestions for Clinical Practice
TLDR
Suggestions for psychologists working with ALS patients are provided, defining the specific needs of the patients and caregivers in each disease stage and setting.
End-of-Life Care of Patients With Amyotrophic Lateral Sclerosis and Other Nonmalignant Diseases
TLDR
Respiratory symptoms are important in the management of nonmalignant diseases in hospice and units taking care of ALS should be prepared to meet the special needs involved in ventilation support.
Palliative Care in Neurology: Integrating a Palliative Approach to Amyotrophic Lateral Sclerosis Care
TLDR
It is concluded that a palliative approach integrated into the care plan of people with ALS from the time of diagnosis can optimise quality of life by relieving symptoms; providing emotional, psychological, and spiritual support pre-bereavement; minimising barriers to a comfortable end of life; and supporting the family post- bereavement.
...
1
2
3
4
5
...

References

SHOWING 1-10 OF 103 REFERENCES
Management Strategies for Patients With Amyotrophic Lateral Sclerosis From Diagnosis Through Death
TLDR
Although physicians cannot cure ALS or even halt progression, there is much that can be done to manage the physical and emotional symptoms, thereby maintaining or enhancing quality of life.
Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives
TLDR
There is considerable evidence that palliative care intervention improves quality of life in patients and carers, and common themes and principles of engagement can be identified across different jurisdictions, and measurement systems have been established that can assess the impact of palliatives care intervention.
Palliative care for people with neurodegenerative conditions
TLDR
Research confirms the high prevalence of physical symptoms, psychosocial issues and spiritual themes for people severely affected by advanced neurodegenerative disorders and that these can be helped by specialist palliative care.
Standards of palliative care for patients with amyotrophic lateral sclerosis: results of a European survey
TLDR
Great efforts are made by the centres to offer the best possible palliative care to ALS patients, and discrepancies in the type of care offered might be resolved by adopting common standards, on the basis of available evidence and mutual consensus.
Standards of palliative care for patients with amyotrophic lateral sclerosis: results of a European survey
TLDR
Great efforts are made by the centres to offer the best possible palliative care to ALS patients, and discrepancies in the type of care offered might be resolved by adopting common standards, on the basis of available evidence and mutual consensus.
The final month of life in patients with ALS
TLDR
It is reported that many patients with ALS still experience distressing physical symptoms in the last month of life, despite enrollment in hospice, and most patients withALS anticipate and plan for their deaths and have their wishes respected.
Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers.
TLDR
The data show a good overall QOL for both NIV and TV patients, but a very high burden of care for TV caregivers, 30% of whom rated their own QOL lower than their patient's QOL, and sexuality was an important issue.
[Quality of life of patients with amyotrophic lateral sclerosis].
TLDR
QoL in ALS patients treated by a multidisciplinary ALS team is investigated, suggesting that the patients are content with the ALS team, but that their psychological reactions and information to relatives are not handled well enough.
The last months of life of people with amyotrophic lateral sclerosis in mechanical invasive ventilation: A qualitative study
TLDR
The study shows that tracheostomy is often undertaken with little discussion, with several indicators of deterioration, which could be triggers for the involvement of palliative care.
End-of-life decision making in 42 patients with amyotrophic lateral sclerosis.
TLDR
Decisions about end-of-life care are often delayed in patients with ALS, and these patients' final decisions seem to be independent of their level of respiratory insufficiency or bulbar function, and most related to the physician addressing end- of- life care decisions in a timely manner.
...
1
2
3
4
5
...