References
- Fegg MJ, Kogler M, Brandstatter M, Anneser JR, Haarmann-Doetkotte S, Wasner M, . Meaning in life in patients with amyotrophic lateral sclerosis. Amyotroph Lateral Scler. 2010;11:469–74.
- Rodriguez KL, Young AJ. Patients' and healthcare providers' understanding of life-sustaining treatment: are perceptions of goals shared or divergent? Soc Sci Med. 2006;62: 125–33.
- Normand C. Measuring outcomes in palliative care: limitations of QALYs and the road to PaIYs. J Pain Symptom Manage. 2009;38:27–31.
- Young JM, McNicoll P. Against all odds: positive life experiences of people with advanced amyotrophic lateral sclerosis. Health Soc Work. 1998;23:35–43.
- Hughes RA, Sinha A, Higginson I, Down K, Leigh PN. Living with motor neuron disease: lives, experiences of services and suggestions for change. Health Soc Care Community. 2005;13:64–74.
- Munroe CA, Sirdofsky, Kuru T, Anderson ED. End-of-life decision making in 42 patients with amyotrophic lateral sclerosis. Respir Care. 2007;52:996–999.
- Rabkin JG, Albert SM, Tider T, del Bene ML, O'Sullivan I, Rowland LP, . Predictors and course of elective long-term mechanical ventilation: a prospective study of ALS patients. Amyotroph Lateral Scler. 2006;7:86–95.
- Albert SM, Whitaker A, Rabkin JG, del Bene M, Tider T, O'Sullivan, . Medical and supportive care among people with ALS in the months before death or tracheostomy. J Pain Symptom Manage. 2009;38:546–553.
- Albert SM, Murphy PL, del Bene ML, Rowland LP. A prospective study of preferences and actual treatment choices in ALS. Neurology. 1999;53:278–283.
- Fegg MJ, Wasner M, Neudert C, Borasio GD. Personal values and individual quality of life in palliative care patients. J Pain Symptom Manage. 2005;30:154–159.
- Locock L, Ziebland S, Dumelow C. Biographical disruption and repair in the context of motor neuron disease. Socio Health Illn. 2009;31:1043–1058.
- King SJ, Duke MM, O'Connor BA. Living with amyotrophic lateral sclerosis/motor neuron disease (ALS/MND): decision-making about ‘ongoing change and adaptation’. J Clin Nurs. 2009;18:745–754.