Abstract
In Parkinson’s disease (PD) typical “palliative care” type symptoms, such as pain, nausea, weight loss and breathlessness can occur throughout the condition, but become more prevalent in later disease stages. Pain may be specifically related to PD, e.g. dystonic pain with wearing off, but is more commonly due to other conditions. The cause can usually be elicited by a careful history and examination, and this guides intervention, both non-pharmaceutical, and pharmaceutical. For example, dystonic pain will respond best to appropriate changes to dopaminergic medication. In later disease stages people have increasing problems with swallowing, and also cognitive impairment. Impaired swallowing may lead to aspiration pneumonia, which is a common cause of hospital admission, and also death. Decisions about interventions towards the end of life, such as insertion of percutaneous endoscopic gastrostomy (PEG) tube for nutrition, can be very challenging, particularly if, as in most cases, the person with PD has not previously expressed their views upon this while they still maintained capacity to make decisions. Advance care planning (ACP) in PD should be encouraged in relation to interventions such as PEG tubes. It may also cover issues such as preferred place of death. Over recent years lower proportions of people have been dying at home, and this is especially true for PD, but home may well be where they would have preferred to die. However, there is little evidence to guide health professionals about how, when, and by whom, ACP should be approached.
Similar content being viewed by others
References
Advance Care Planning (2007) A guide for health and social care staff. NHS End of Life Care Programme
Barnes K, Jones L, Tookman A, King M (2007) Acceptability of an advance care planning interview schedule: a focus group study. Palliat Med 21:23–28
Davidson KW, Hackler C, Caradine DR, McCord RS (1989) Physician’s attitudes on advance directives. J Am Med Assoc 262:2415–2419
Dunlop RJ, Davies RJ, Hockley JM (1989) Preferred versus actual place of death: a hospital palliative care support team experience. Palliat Med 3:197–201
Elleshaw J, Ward C (2003) Care of the dying patient: the last hours or days of life. BMJ
Emanuel LL, Barry MJ, Stoeckle JD, Ettelson LM, Emanuel EJ (1991) Advance directives for medical care—a case for greater use. N Engl J Med 324(13):889–895
Engelhardt JB, McClive Reed KP, Toseland RW et al (2006) Effects of a program for coordinated care of advanced illness on patients, surrogates and healthcare costs: a randomized trial. Am J Manag Care 12(2):93–100
Hinton J (1994) Which patients with terminal cancer are admitted from homecare? Palliat Med 8:197–210
Horne G, Seymour J, Shepherd K (2006) Advance care planning for patients with inoperable lung cancer. Int J Palliat Nurs 12(4):172–178
Lamont EB, Siegler M (2000) Paradoxes in cancer patients’ advance care planning. J Palliat Med 3:27–35
Later EB, King D (2007) Advance directives: results of a community education symposium. Crit Care Nurse 27:31–35
Lee M, Walker R, Hildreth A, Prentice W (2006a) A survey of pain in idiopathic Parkinson’s disease. J Pain Symptom Manag 32(5):462–469
Lee MA, Walker RW, Hildreth AJ, Prentice WM (2006b) Individualised assessment of quality of life in idiopathic parkinson’s disease (IPD). Mov Disord 21:1929–1934
Lee M, Prentice W, Hildreth A, Walker R (2007) Measuring symptom load in idiopathic Parkinson’s disease. Parkinsonism Relat Disord 13:284–289
MacMahon DG, Thomas S (1998) Practical approach to quality of life in Parkinson’s disease: the nurse’s role. J Neurol 245(Suppl 1):S19–22
Munday D, Petrova M, Dale J (2009) Exploring preferences for place of death with terminally ill patients: qualitative study of experiences of general practitioners and community nurses in England. BMJ 339:b2391
Pautex S, Hermann FR, Zulian GB (2008) Role of advance directives in palliative care units. Palliat Med 22:835–841
Pennington S, Snell K, Lee M, Walker R (2010) The cause of death in idiopathic Parkinson’s disease. Parkinsonism Relat Disord 16:434–437
Pugh EJ, Song R et al (2009) A profile of the belief system and attitudes to end-of-life decisions of senior clinicians working in a National Health Service Hospital in the United Kingdom. Palliat Med 23:158–164
Rabow MW, Dibble SL, Pantilat SZ, McPhee SJ (2004) The comprehensive care team: a controlled trial of outpatient palliative medicine consultation. Arch Intern Med 164(1):83–91
Smucker WD, Ditto PH, Moore KA, Druley JA, Danks JH, Townsend A (1993) Elderly outpatients respond favourably to a physician-initiated advance directive discussion. J Am Board Fam Pract 6(5):473–482
Snell K, Pennington S, Lee M, Walker R (2009) The place of death in Parkinson’s disease. Age Ageing 38(5):617–619
Teno JM, Grunier A, Schwartz Z, Nanda A, Wetle T (2007) Association between advance directives and quality of end-of-life care: a national study. J Am Geriatr Soc 55(2):189–194
Thompson DBT, Barbour RS, Schwartz L (2003) Health professional’s views on advance directives: a qualitative interdisciplinary study. Palliat Med 17:403–409
Townsend J, Frank AO, Fermont D, Dyer S, Karran O, Walgrave A, Piper M (1990) Terminal cancer care and patients’ preference for place of death: a prospective study. BMJ 301:415–417
Woodford HJ, Walker RW (2005) Emergency hospital admissions in idiopathic Parkinson’s disease. Mov Disord 20(9):1104–1108
World Health Organisation (2002) http://www.who.int/cancer/palliative/definition/en/
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Walker, R.W. Palliative care and end-of-life planning in Parkinson’s disease. J Neural Transm 120, 635–638 (2013). https://doi.org/10.1007/s00702-013-0967-3
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00702-013-0967-3