Some difficult decisions in ALS/MND

Amyotrophic Lateral Sclerosis

Volumn 11, Issue 4, 2010, Pages 339-343

  Oliver, David J ^a,b   Turner, Martin R ^c,d  

^a Wisdom Hospice   (United Kingdom)

^b UNIVERSITY OF KENT   (United Kingdom)

^c UNIVERSITY OF OXFORD   (United Kingdom)

^d JOHN RADCLIFFE HOSPITAL   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

AMYOTROPHIC LATERAL SCLEROSIS; ASSISTED VENTILATION; CLINICAL DECISION MAKING; DOCTOR PATIENT RELATION; GASTROSTOMY; HUMAN; IMMOBILIZATION; INTERPERSONAL COMMUNICATION; MOTOR NEURON DISEASE; PRIORITY JOURNAL; REVIEW; TERMINAL CARE; TREATMENT PLANNING; ASSISTED SUICIDE; DECISION MAKING; LUNG VENTILATION; MORTALITY; PSYCHOLOGY;

AMYOTROPHIC LATERAL SCLEROSIS; DECISION MAKING; GASTROSTOMY; HUMANS; PULMONARY VENTILATION; SUICIDE, ASSISTED;

EID: 77953731577     PISSN: 17482968     EISSN: 1471180X     Source Type: Journal    
DOI: 10.3109/17482968.2010.487532     Document Type: Review

References (20)

1. Matthews WB. Practical Neurology. 2nd edn. Blackwell: GB; 1970.
2. Talbot K, Marsden R. Motor Neuron Disease: The Facts. Oxford University Press: Oxford, UK; 2008.
3. Phukan J, Pender NP, Hardiman O. Cognitive impairment in amyotrophic lateral sclerosis. Lancet Neurol. 2007;6: 994-1003. (Pubitemid 47562321)
4. Goldstein L. Control of symptoms: cognitive dysfunction. In: Oliver D, Borasio GD, Walsh D, editors. Palliative care in amyotrophic lateral sclerosis from diagnosis to bereavement. 2nd edition. Oxford University Press: Oxford, UK; 2006.
5. Strong MJ, Grace GM, Freedman M, Lomen-Hoerth C, Woolley S, Goldstein L, et al. Consensus criteria for the diagnosis of frontotemporal cognitive and behavioural syndromes in amyotrophic lateral sclerosis. Amyotroph Lateral Scler. 2009;10:131-146
6. Sloan R, Pongratz DE, Borasio GD. Communication: breaking the news. In: Oliver D, Borasio GD, Walsh D, editors. Palliative Care in Amyotrophic Lateral Sclerosis - from diagnosis to bereavement. 2nd edn. Oxford University Press, Oxford; 2006.
7. Heffernan C, Jenkinson C, Holmes T, Feder G, Kupfer R, Leigh PN, et al. Nutritional management in MND/ALS patients: an evidence based review. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004;5:72-83.
8. Miller RG, Jackson CE, Karsarkis EJ, England JD, Forshew D, Johnston W, et al. Practice parameter update. The care of the patient with amyotrophic lateral sclerosis: drug, nutritional and respiratory therapies (an evidence based review). Neurology. 2009;73;1218-1226
9. Heffernen C, Jenkinson C, Holmes T, Macleod H, Kinnear W, Oliver D, et al. Management of respiration in MND/ALS patients: an evidence based review. Amyotroph Lateral Scler. 2006;7:5-15.
10. Bourke SC, Tomlinson M, Willims L, Bullock RE, Shaw PJ, Gibson GJ. (2006) Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: a randomized controlled trial. Lancet Neurol. 2006;5:140-147
11. Hayashi H, Oppenheimer EA. ALS patients on TPPV: totally locked-in state: neurological findings and ethical implications. Neurology. 2003;61:135-137
12. Talbot K, Turner MR, Marsden R, Botell RE. Motor Neuron Disease: A Practical Manual. Oxford University Press; Oxford, UK; 2010.
13. Miller RG, Rosenberg JA, Gelinas DF, Mitsumoto H, Newman D, Sufit R, et al., and the ALS Practice Parameters Task Force: Practice Parameter. The care of the patient with amyotrophic lateral sclerosis (an evidence based review): report of the Quality Standards Subcommittee of the American Academy of Neurology: ALS Practice Parameters Task Force. Neurology. 1999;52: 1311-1323 (Pubitemid 29190518)
14. Agar M, Currow DC, Shelby-James TM, Plummer J, Sanderson C, Abernethy AP. Preference for place of care and place of death in palliative care: are these different questions? Pall Med. 2008;22:787-795
15. Oliver D. The quality of care and symptom control: the effects on the terminal phase of MND/ALS. J Neuro Sci. 1996;139(Suppl):134-136
16. Veldink JH, Wokke JHJ, van der Wal G, Vianney de Jong JMB, van den Berg LH. Euthanasia and physician assisted suicide among patients with amyotrophic lateral sclerosis in the Netherlands. N Eng J Med. 2002;346:1638-1644
17. Campbell D. Suicide clinic challenged over patients who could have lived ' for decades ' . The Guardian. 21.6.10.
18. Neudert C, Oliver D, Wasner M, Borasio GD. The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol. 2001:248:612-616 (Pubitemid 32700299)
19. Ganzini L, Johnston WS, McFarland BH, Tolle SW, Lee MA. Attitudes of patients with amyotrophic lateral sclerosis and their caregivers toward assisted suicide. N Engl J Med. 1998;339:967-973
20. Showalter SE. Compassion Fatigue. What Is It? Why Does It Matter? Recognizing the Symptoms, Acknowledging the Impact, Developing the Tools to Prevent Compassion Fatigue, and Strengthen the Professional Already Suffering From the Effects. Am J Hosp Palliat Care. 2010 - online 14.1.10.