Motor neurone disease: a hospice perspective.

O’Brien, Tony; Kelly, Moira; Saunders, Cicely

doi:10.1136/bmj.304.6825.471

Cited by 154 publications

(116 citation statements)

References 10 publications

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“…Patients and their families fear the deterioration, and in particular choking or suffocating (Oliver 2000;O'Brien et al 1992). However, distress is rare and with good palliative care, including the management of dyspnoea, pain and swallowing problems, and support of patient and family, the vast majority of deaths from MND can be peaceful (Neudert et al 2001;O'Brien et al 1992).…”

Section: The Terminal Stagesmentioning

confidence: 99%

“…However, distress is rare and with good palliative care, including the management of dyspnoea, pain and swallowing problems, and support of patient and family, the vast majority of deaths from MND can be peaceful (Neudert et al 2001;O'Brien et al 1992). An international study showed that only 5% of a group of 171 patients in the UK and Germany died in distress, and 91% died peacefully (Neudert et al 2001).…”

Section: The Terminal Stagesmentioning

confidence: 99%

“…In the past, the role of specialist palliative care has often been more in the later stages of the disease (O'Brien et al 1992). However, for the provision of optimum care, this role is increasingly seen to be important from the time of the diagnosis, or soon after.…”

Section: Specialist Palliative Carementioning

confidence: 99%

See 2 more Smart Citations

Palliative Care for Motor Neurone Disease

Oliver

2002

Pract Neurol

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Section: The Terminal Stagesmentioning

confidence: 99%

Section: The Terminal Stagesmentioning

confidence: 99%

See 1 more Smart Citation

Palliative Care for Motor Neurone Disease

Oliver

2002

Pract Neurol

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“…Relief of dyspnea using opioids was rated as good by 81% of hospice patients with ALS. (O'Brien et al, 1992). Dose titration against clinical symptoms is recommended and rarely results in life-threatening respiratory depression.…”

Section: Invasive Mechanical Ventilationmentioning

confidence: 99%

Assessment and Management of Respiratory Dysfunction in Patients with Amyotrophic Lateral Sclerosis

Coco¹,

Volanti²,

Cicco³

et al. 2012

Amyotrophic Lateral Sclerosis

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“…The place for palliative care in non-cancer patients is increasingly recognised, [3][4][5][6] especially in rapidly fatal neurological conditions such as MND, [7][8] and many guidelines now recommend early referral to palliative care services. [9][10] However, there are some significant differences in the palliative care needs of people with LTNC, compared with cancer.…”

Section: The Challenge Of Lifelong Care For People With Ltncsmentioning

confidence: 99%

Long-term neurological conditions: management at the interface between neurology, rehabilitation and palliative care

2008

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-Long-term neurological conditions (LTNCs) comprise a diverse set of conditions resulting from injury or disease of the nervous system that will affect an individual for life. Some 10 million people in the UK are living with a neurological condition which has a significant impact on their lives, and they make up 19% of hospital admissions. These guidelines build on the Quality Requirements in the National Service Framework for Long-term (Neurological) Conditions to explore the interaction between specialist neurology, rehabilitation and palliative care services, and how they may best work together to provide long-term support for people with LTNCs and the family members who care for them. The guidelines also provide some practical advice for other clinicians when caring for someone with an LTNC, and outline indications for specialist referral. This article provides a brief summary. Full details of the methods and literature evaluation, as well as tools for implementation, are available in the full guideline. BackgroundLong-term neurological conditions (LTNCs) form a diverse set of conditions resulting from injury or disease of the nervous system that will affect an individual for the rest of their lives. They include:• sudden onset conditions (eg acquired brain injury of any cause (including stroke), spinal cord injury)• intermittent conditions (eg epilepsy) • progressive conditions (eg multiple sclerosis (MS), motor neurone disease (MND), Parkinson's disease (PD) and other neurodegenerative disorders)• stable conditions with/without age-related degeneration (eg polio or cerebral palsy). Taken together, LTNCs are more common than most clinicians realise. Some 10 million people in the UK are living with a neurological condition which has a significant impact on their lives, and they make up 19% of hospital admissions. 1 The Department of Health's National Service Framework (NSF) for Long-term Conditions was published in March 2005. Although much of the guidance applied to anyone living with a long-term condition, the main focus of the document was on neurological conditions. To avoid confusion with other policy documents contained within the Longterm Conditions Strategy (which includes the frameworks for renal services and for diabetes) the NSF has subsequently been re-badged as the NSF for Longterm (Neurological) Conditions. The NSF advocates lifelong care for people with LTNCs. 2 It highlights the need for integrated care and service provision including specialist neurology, rehabilitation and palliative care services, but also stresses the importance of other clinicians being aware of the particular needs of this group of patients when they present for treatment of other conditions. When someone with an LTNC is admitted to a general hospital setting for a procedure or intercurrent illness, hospital staff are required to manage both the acute illness and the LTNC. Many patients are maintained on finely tuned management routines, eg 24-hour spasticity management programmes, treatment for PD symptoms, or...

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Motor neurone disease: a hospice perspective.

Cited by 154 publications

References 10 publications

Palliative Care for Motor Neurone Disease

Palliative Care for Motor Neurone Disease

Assessment and Management of Respiratory Dysfunction in Patients with Amyotrophic Lateral Sclerosis

Long-term neurological conditions: management at the interface between neurology, rehabilitation and palliative care

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