This Article Abstract Free Full Text (Free PDF) Free Alert me when this article is cited Alert me if a correction is posted Services Email this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Add to Saved Citations Download to citation manager Request Permissions Request Reprints Add to My Marked Citations Citing Articles Citing Articles via Google Scholar Citing Articles via Scopus Google Scholar Articles by Lanoix, M. Search for Related Content PubMed PubMed Citation Articles by Lanoix, M. Pubmed/NCBI databases Medline Plus Health Information Palliative Care Parkinson's Disease Patient Rights Social Bookmarking                         What's this?

Palliative care and Parkinson's disease: managing the chronic-palliative interface

Department of Philosophy and Religion, I.G. Greer Hall, Appalachian State University, PO Box 32104, Boone, North Carolina 28608-2104, USA, Monique.Lanoix{at}DAL.CA

The increasing numbers of individuals needing palliative services and changing the nature of these services bring about new challenges for the delivery and accessibility of timely and appropriate palliative care services. Socioeconomic factors are known to affect access but disease type is a factor which can negatively impact the availability of adequate palliative services. The purpose of this article is to examine the barriers to palliation for chronic illnesses that span long periods of time. My analysis centers on palliation for Parkinson's disease because it illustrates the difficulties of managing the chronic-palliative interface, and it also demonstrates how care is situated in an evolving network of professional and non-professional actors. I argue that insuring the availability of adequate palliative services entails negotiating the chronic-palliative interface, which, in turn, requires continued multi-disciplinary professional involvement as well as the integration and recognition of the care provided by family caregivers.

Key Words: Parkinson's disease • neurodegenerative diseases • palliation • care giving • chronic care

References

• Jennings B., Ryndes T., D'Onofrio C., Baily MA Access to hospice care: expanding boundaries, overcoming barriers. The Hastings Center Report, Special Supplement 2003; 33: S3.[Medline] [Order article via Infotrieve]
• www.hc-sc.gc.ca/hcs-sss/palliat/index_e.html (accessed 28th May, 2008).
• Quality end-of-life care: the right of every Canadian. Report from the Standing Senate Committee on Social Affairs, Science and Technology, June 2000.
• Zimmerman C., Riechelman R., Krzyzanowska M., Rodin G., Tannock I. Effectiveness of specialized palliative care: a systematic review. JAMA 2008; 299: 1698-709.[Abstract/Free Full Text]
• Foley KM, Carver A. Palliative care in neurology. Palliat Care 2001; 19: 793.
• http://news.bbc.co.uk/2/hi/health/7507932.stm (accessed 15th August, 2008).
• Final report of the committee on Canadian strategy on palliative and end-of-life care, Dec. 2002 to Dec. 2007. Available at http://www.hc-sc.gc.ca/hcs-sss/pubs/palliat/2007-soin_fin-end_life/index_e.html (accessed 28th May, 2008).
• Bunting-Perry LK Palliative care in Parkinson's disease: implications for neuroscience nursing. J Neurosci Nurs 2006; 38: 106-13.[CrossRef][Medline] [Order article via Infotrieve]
• Jennings B., Ryndes T., D'Onofrio C., Baily MA What is hospice care? The Hastings Center Report, Special Supplement 2003; 33: S7.[CrossRef]
• Fins J. A palliative ethic of care: clinical wisdom at life's end. Sudbury: Jones and Bartlett, 2006:17.
• Kristjanson LJ, Aoun SM, Oldham L. Palliative care and support for people with neurodegenerative conditions and their carers. Int J Palliat Nurs 2005; 12: 369.
• http://news.bbc.co.uk/1/hi/health/medical_notes/ 199709.stm (accessed 13th August, 2008).
• Liao S., Arnold R. Attitudinal differences in neurodegenerative disorders. J Palliat Med 2007; 10: 431.
• The American Academy of Neurology Ethics & Humanities Subcommittee. Palliative care in neurology. Neurology 1996; 46: 870-72.[Medline] [Order article via Infotrieve]
• Low JA, Pang WS, Chan DK, Chye R. A palliative care approach to end-stage neurodegenerative conditions. Ann Acad Med Singapore 2003; 32: 778-84.[Medline] [Order article via Infotrieve]
• Borascio G., Voltz R. Palliative care in neurology. J Palliat Care 2005; 21: 188.[Medline] [Order article via Infotrieve]
• http://www.parkinsons.org.uk/about-parkinsons/ what-is-parkinsons/will-i-die-from-parkinsons.aspx (accessed June 16, 2008).
• Kinsley M. Mine is longer than yours. New Yorker, April 7, 2008: 41.
• Hudson PL, Toye C., Kristjanson LJ Would people with Parkinson's disease benefit from palliative care?. Palliat Med 2006; 20: 91.
• Hurley D. Untreated pain and suffering in end-stage Parkinson disease prompts call for improved palliative care. Neurology Today, June 19 2007; 16.
• Clough CG, Blockley A. Palliative care for Parkinson. In: Voltz R, Bernat JL, Borasio GD, Maddocks I, Oliver D, Portenoy RK, eds. Palliative care in neurology, New York: Oxford University Press, 2004: 48.
• Elman LB, Houghton DJ, Wu GF, Hurtig HI, Markowitz CE, McCluskey L. Palliative care in amyotrophic lateral sclerosis, Parkinson's disease, and multiple sclerosis. J Palliat Med 2007; 10: 445.
• Guberman N., Maheu P. Conceptions of family caregivers: implications for professional practice. Can J Aging 2002; 21: 27-37.
• Guberman N., Lavoie JP, Pepin J., Lauzon S., Montejo ME Formal service providers' views of family caregivers' responsibilities and difficulties. Can J Aging 2006; 25: 43-53.[Medline] [Order article via Infotrieve]
• Liao S., Arnold RM Editorial: Caring for caregivers: the essence of palliative care. J Palliat Med 2006; 9: 1172.[CrossRef][Medline] [Order article via Infotrieve]
• Herbert RS, Schulz R. Caregiving at the end of life. J Palliat Med 2006; 9: 1174-87.[CrossRef][Medline] [Order article via Infotrieve]
• Connor S., Adams J. Caregiving at the end of life. The Hastings Center Report, Special Supplement 2003; 33: S8-9.
• Goy ER, Carter JH, Ganzini L. Parkinson disease at end of life: caregiver perspectives. Neurology 2007; 69: 611.[Free Full Text]
• Schrag A., Hovris A., Morley D., Quinn N., Jahanshahi M. Caregiver-burden in Parkinson's disease is closely associated with psychiatric symptoms, falls and disability. Parkinsonism Relat Disord 2003; 12: 35-41.
• Parrish M., Giunta N., Adams S. Parkinson's disease caregiving: implications for care management. Care Manag J 2003; 4: 53.[CrossRef][Medline] [Order article via Infotrieve]
• Caap-Ahlgren M., Dehlin O. Factors of importance to the caregiver burden experienced by family caregivers of Parkinson's disease patients. Aging Clin Exp Res 2002; 14: 371-7.[Medline] [Order article via Infotrieve]
• Finlay I. The continuing challenge of palliative care. Br J Gen Pract January, 2006; 5.
• Thomas S., MacMahon D. Parkinson's disease, palliative care and older people: part 1. Nurs Older People 2004; 16: 22-4.[Medline] [Order article via Infotrieve]
• Lorenz KA, Lynn J., Shugarman LR, et al. Evidence for improving palliative care at the end of life: a systematic review. Ann Intern Med 2008; 148: 147.[Abstract/Free Full Text]

Chronic Illness, Vol. 5, No. 1, 46-55 (2009)
DOI: 10.1177/1742395309102819


CiteULike    Complore    Connotea    Del.icio.us    Digg    Reddit    Technorati    Twitter    What's this?

This Article Abstract Free Full Text (Free PDF) Free Alert me when this article is cited Alert me if a correction is posted Services Email this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Add to Saved Citations Download to citation manager Request Permissions Request Reprints Add to My Marked Citations Citing Articles Citing Articles via Google Scholar Citing Articles via Scopus Google Scholar Articles by Lanoix, M. Search for Related Content PubMed PubMed Citation Articles by Lanoix, M. Pubmed/NCBI databases Medline Plus Health Information Palliative Care Parkinson's Disease Patient Rights Social Bookmarking                         What's this?