Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress 2023 EHA Congress 2023 ASCO Annual Meeting
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on sleep in brain health

LIVE: Thursday 2nd May 2024, 18:00-19:30 (CEST)

Quality sleep is essential for health. But what happens to our brains when sleep patterns are disturbed? Join our experts to explore the interplay between sleep disruption and neurological diseases, and the questions that you need to be asking your patients to help you prevent the harmful effects of sleep deprivation.
ADVANCED SEARCH
Log in
Top
BMC Palliative Care
Published in: BMC Palliative Care 1/2014

Open Access 01-12-2014 | Research article

Multiple sclerosis and palliative care - perceptions of severely affected multiple sclerosis patients and their health professionals: a qualitative study

Authors: Heidrun Golla, Maren Galushko, Holger Pfaff, Raymond Voltz

Published in: BMC Palliative Care | Issue 1/2014

Login to get access

Abstract

Background

In Germany, patients severely affected by Multiple Sclerosis (MS) do not routinely come into contact with palliative care, even if possibly beneficial. This study was aimed at investigating how severely affected MS patients and their health professionals perceive palliative care to determine how to better approach these patients in Germany about this topic.

Methods

15 patients feeling severely affected by MS and 23 health professionals experienced with MS patients (3 social workers, 7 nurses, and 13 physicians) in both in-/outpatient and rural/ urban settings participated in this qualitative study in Germany. Semi-structured interviews (patients, health professionals) and focus groups (health professionals) were conducted, transcribed verbatim and analyzed via qualitative content analysis.

Results

MS patients were mostly unfamiliar with the term “palliative care” or were aware of it only in relation to cancer and dying. They did not view it as relevant to themselves. Health professionals predominantly associated palliative care with dying cancer patients, if familiar with it at all. Most physicians doubted its relevance for neurological patients and denied MS as a cause of death. Nevertheless, most felt they already offered their patients sufficient palliative care, or thought that it could not meet MS patients’ complex needs. Most nurses and social workers recognized deficits in existing care structures and regarded palliative care as an opportunity for MS patients.

Conclusion

MS patients’, and health professionals’ restricted, death-associated awareness of palliative care leads to discomfort, fear or rejection of this idea. Therefore, a defined concept of palliative care emphasizing opportunities for severely affected MS patients and considering early integration should be spread throughout the German MS community as an additional layer of support for this patient group.
Appendix
Available only for authorised users
Literature
1.
Fernandez O, Alvarez-Cermeno JC, Arroyo-Gonzalez R, Brieva L, Calles-Hernandez MC, Casanova-Estruch B, Comabella M, de las Heras V, Garcia-Merino JA, Hernandez-Perez MA, Izquierdo G, Meca-Lallana JE, Munoz-Garcia D, Olascoaga J, Oreja-Guevara C, Prieto JM, Ramio-Torrenta L, Rodriguez-Antiquedad A, Romero-Pinel L, Sanchez F, Tellez N, Tintore M, Montalban X, Post-ECTRIMs group: Review of the novelties presented at the 27th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) (II). Rev Neurol. 2012, 54 (12): 734-749.PubMed
2.
Krupp LB, Rizvi SA: Symptomatic Therapy for Underrecognized Manifestations of Multiple Sclerosis. Neurology. 2002, 58 (8 Suppl 4): 32-39.CrossRef
3.
Confavreux C, Aimard G, Devic M: Course and prognosis of multiple sclerosis assessed by the computerized data processing of 349 patients. Brain. 1980, 103 (2): 281-300. 10.1093/brain/103.2.281.CrossRefPubMed
4.
Stern M: Aging with multiple sclerosis. Phys Med Rehabil Clin. 2005, 16 (1): 219-234. 10.1016/j.pmr.2004.06.010.CrossRef
5.
Koch-Henriksen N, Bronnum-Hansen H, Stenager E: Underlying cause of death in Danish patients with multiple sclerosis: results from the Danish Multiple Sclerosis Registry. J Neurol Neurosurg Psychiatry. 1998, 65 (1): 56-59. 10.1136/jnnp.65.1.56.CrossRefPubMedPubMedCentral
6.
Bronnum-Hansen H, Koch-Henriksen N, Stenager E: Trends in survival and cause of death in Danish patients with multiple sclerosis. Brain. 2004, 127 (Pt 4): 844-850.CrossRefPubMed
7.
Scalfari A, Knappertz V, Cutter G, Goodin DS, Ashton R, Ebers GC: Mortality in patients with multiple sclerosis. Neurology. 2013, 81 (2): 184-192. 10.1212/WNL.0b013e31829a3388.CrossRefPubMedPubMedCentral
8.
Higginson IJ, Hart S, Silber E, Burman R, Edmonds P: Symptom prevalence and severity in people severely affected by multiple sclerosis. J Palliat Care. 2006, 22 (3): 158-165.PubMed
9.
Edmonds P, Vivat B, Burman R, Silber E, Higginson IJ: Loss and Change: Experiences of People Severely Affected by Multiple Sclerosis. Palliat Med. 2007, 21 (2): 101-107. 10.1177/0269216307076333.CrossRefPubMed
10.
Golla H, Galushko M, Pfaff H, Voltz R: Unmet needs of severely affected multiple sclerosis patients: the health professionals’ view. Palliat Med. 2012, 26 (2): 139-151. 10.1177/0269216311401465.CrossRefPubMed
11.
Edmonds P, Vivat B, Burman R, Silber E, Higginson IJ: ‘Fighting for Everything’: Service Experiences of People Severely Affected by Multiple Sclerosis. Mult Scler. 2007, 13 (5): 660-667. 10.1177/1352458506071789.CrossRefPubMed
12.
Higginson IJ, Hart S, Burman R, Silber E, Saleem T, Edmonds P: Randomised controlled trial of a new palliative care service: Compliance, recruitment and completeness of follow-up. BMC Palliat Care. 2008, 7: 7-10.1186/1472-684X-7-7.CrossRefPubMedPubMedCentral
13.
Higginson IJ, McCrone P, Hart SR, Burman R, Silber E, Edmonds PM: Is short-term palliative care cost-effective in multiple sclerosis? A randomized phase II trial. J Pain Symptom Manag. 2009, 38 (6): 816-826. 10.1016/j.jpainsymman.2009.07.002.CrossRef
14.
Edmonds P, Hart S, Wei G, Vivat B, Burman R, Silber E, Higginson IJ: Palliative care for people severely affected by multiple sclerosis: evaluation of a novel palliative care service. Mult Scler. 2010, 16 (5): 627-636. 10.1177/1352458510364632.CrossRefPubMed
15.
Galushko M, Golla H, Strupp J, Karbach U, Kaiser C, Ernstmann N, Pfaff H, Ostgathe C, Voltz RJ: Unmet needs of patients severely affected by Multiple Sclerosis in Germany: a qualitative study. J Palliat Med. 2014, [Epub ahead of print]
16.
Kesselring J, Serafin B: Symptomatic therapy and neurorehabilitation in multiple sclerosis. Lancet Neurol. 2005, 4: 643-652. 10.1016/S1474-4422(05)70193-9.CrossRefPubMed
17.
Henze T: Symptomatic Therapy of Multiple Sclerosis. Nervenarzt. 2004, 75 (Suppl 1): 2-39.PubMed
18.
Voltz R: Palliative Care for Multiple Sclerosis: a Counter-Intuitive Approach?. Mult Scler. 2010, 16 (5): 515-517. 10.1177/1352458510367466.CrossRefPubMed
19.
Wilson E, Elkan R, Seymour J, Almack K: A UK literature review of progressive long-term neurological conditions. Br J Community Nurs. 2008, 13 (5): 206-208-212CrossRefPubMed
20.
21.
Kurtzke JF: Rating Neurologic Impairment in Multiple Sclerosis: an Expanded Disability Status Scale (EDSS). Neurology. 1983, 33 (11): 1444-1452. 10.1212/WNL.33.11.1444.CrossRefPubMed
22.
Buecken R, Galushko M, Golla H, Strupp J, Hahn M, Ernstmann N, Pfaff H, Voltz R: Patients feeling severely affected by multiple sclerosis: How do patients want to communicate about end-of-life issues?. Patient Educ Counsel. 2012, 88 (2): 318-324. 10.1016/j.pec.2012.03.010.CrossRef
23.
24.
Pope C, Mays N: Qualitative Research in Health Care. 2006, Massachusetts: Blackwell PublishingCrossRef
25.
Glaser BG, Strauss AL: Grounded Theory. Strategien qualitativer Forschung. 1998, Bern: Verlag Hans Huber
26.
Bohnsack R: Rekonstruktive Sozialforschung. Einführung in qualitative Methoden. 2007, Opladen & Farmington Hills: Verlag Barbara Budrich
27.
Kitzinger J: Focus Groups. Qualitative Research in Health Care. Edited by: Pope C, Mays N. 2006, Massachusetts: Blackwell Publishing, 21-31.CrossRef
28.
Reed J, Payton VR: Focus groups: issues of analysis and interpretation. J Adv Nurs. 1997, 26 (4): 765-771. 10.1046/j.1365-2648.1997.00395.x.CrossRefPubMed
29.
Kidd PS, Parshall MB: Getting the focus and the group: enhancing analytical rigor in focus group research. Qual Health Res. 2000, 10 (3): 293-308. 10.1177/104973200129118453.CrossRefPubMed
30.
Tong A, Sainsbury P, Craig J: Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007, 19 (6): 349-357. 10.1093/intqhc/mzm042.CrossRefPubMed
31.
Oeseburg B, Jansen D, De Keyser J: Reducing discrepancies between MS patients’ needs and use of healthcare services by applying a transmural care model. J Neurosci Nurs. 2004, 36 (4): 214-219. 10.1097/01376517-200408000-00008. 230CrossRefPubMed
32.
McIlfatrick S: Assessing palliative care needs: views of patients, informal carers and healthcare professionals. J Adv Nurs. 2007, 57 (1): 77-86. 10.1111/j.1365-2648.2006.04062.x.CrossRefPubMed
33.
Wilson E, Seymour J, Aubeeluck A: Perspectives of staff providing care at the end of life for people with progressive long-term neurological conditions. Palliat Support Care. 2011, 9 (4): 377-385. 10.1017/S1478951511000393.CrossRefPubMed
34.
Small N, Rhodes P: Multiple sclerosis, ‘We all live in hope’. Too ill to talk? User involvement and palliative care. Edited by: Neil S, Rhodes P. 2000, London/NY: Routledge
35.
Kierner KA, Gartner V, Bartsch R, Hladschik-Kermer B, Gruber A, Hassler M, Watzke HH: Attitudes towards palliative care in primary metastatic cancer: a survey among oncologists. Wien Klin Wochenschr. 2010, 122 (1–2): 45-49.CrossRefPubMed
36.
Oliver D, Silber E: End of life care in neurological disease. In End of life care in neurological disease. Edited by: Oliver D. 2012, London: Springer
37.
Seeber AA, Hijdra A, Vermeulen M, Willems DL: Discussions about treatment restrictions in chronic neurologic diseases: a structured review. Neurology. 2012, 78 (8): 590-597. 10.1212/WNL.0b013e318247cc56.CrossRefPubMed
38.
Ostgathe C, Alt-Epping B, Golla H, Gaertner J, Lindena G, Radbruch L, Voltz R: Non-cancer patients in specialized palliative care in Germany: what are the problems?. Palliat Med. 2011, 25 (2): 148-152. 10.1177/0269216310385370.CrossRefPubMed
39.
Sleeman KE, Ho YK, Verne J, Glickman M, Silber E, Gao W, Higginson IJ: Place of death, and its relation with underlying cause of death, in Parkinson’s disease, motor neurone disease, and multiple sclerosis: a population-based study. Palliat Med. 2013, 27 (9): 840-846. 10.1177/0269216313490436.CrossRefPubMed
40.
Putman M, Tang F: Long –term care planning and preparartion among persons with Multiple Sclerosis. Home Health Care Serv Q. 2008, 27 (2): 143-165. 10.1080/01621420802022613.CrossRef
41.
Pastrana T, Jünger S, Ostgathe C, Elsner F, Radbruch L: A matter of definition - key elements identified in a discourse analysis of definitions of palliative care. Palliat Med. 2008, 22 (3): 222-232. 10.1177/0269216308089803.CrossRefPubMed
42.
Hui D, Mori M, Parsons HA, Kim SH, Li Z, Damani S, Bruera E: The lack of standard definitions in the supportive and palliative oncology literature. J Pain Symptom Manage. 2012, 43 (3): 582-592. 10.1016/j.jpainsymman.2011.04.016.CrossRefPubMed
43.
Van Mechelen W, Aertgeerts B, De Ceulaer K, Thoonsen B, Vermandere M, Warmenhoven F, Van Rijswijk E, De Lepeleire J: Defining the palliative care patient: a systematic review. Palliat Med. 2013, 27 (3): 197-208. 10.1177/0269216311435268.CrossRefPubMed
44.
Fadul N, Elsayem A, Palmer J, Del Fabbro E, Swint K, Li Z, Poulter V, Bruera E: What’s in a name?: a survey of medical oncologists and midlevel providers at a comprehensive cancer center. Cancer. 2009, 115 (9): 2013-2021. 10.1002/cncr.24206.CrossRefPubMed
45.
Morstad Boldt A, Yusuf F, Himelstein B: Peceptions of the term palliative care. Palliat Med. 2006, 9 (5): 1128-1136. 10.1089/jpm.2006.9.1128.CrossRef
46.
Hussain J, Adams D, Campbell C: End-of-life care in neurodegenerative conditions: outcomes of a specialist palliative neurology service. Int J Palliat Nurs. 2013, 19 (4): 162-169.CrossRefPubMed
47.
Schneider N, Engeser P, Behmann M, Kuhne F, Wiese B: Specialized outpatient palliative care. The expectations of general practitioners. Schmerz. 2011, 25 (2): 166-10.1007/s00482-011-1037-0. 168-173CrossRefPubMed
48.
Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ: Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010, 363 (8): 733-742. 10.1056/NEJMoa1000678.CrossRefPubMed
Metadata
Title
Multiple sclerosis and palliative care - perceptions of severely affected multiple sclerosis patients and their health professionals: a qualitative study
Authors
Heidrun Golla
Maren Galushko
Holger Pfaff
Raymond Voltz
Publication date
01-12-2014
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2014
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/1472-684X-13-11

Other articles of this Issue 1/2014

BMC Palliative Care 1/2014 Go to the issue

Research article

Social capital in a lower socioeconomic palliative care population: a qualitative investigation of individual, community and civic networks and relations

Research article

Predictors of emergency room visits or acute hospital admissions prior to death among hospice palliative care clients in Ontario: a retrospective cohort study

Erratum

Erratum to: The feasibility and acceptability of neuromuscular electrical stimulation to improve exercise performance in patients with advanced cancer: a pilot study

Research article

Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment: a life-world phenomenological study

Research article

“It’s alright to ask for help”: findings from a qualitative study exploring the information and support needs of family carers at the end of life

Reviewer acknowledgement

BMC Palliative Care reviewer acknowledgement, 2013