Patients feeling severely affected by multiple sclerosis: How do patients want to communicate about end-of-life issues?

Buecken, Raphael; Galushko, Maren; Golla, Heidrun; Strupp, Julia; Hahn, Moritz; Ernstmann, Nicole; Pfaff, Holger; Voltz, Raymond

doi:10.1016/j.pec.2012.03.010

Cited by 70 publications

(78 citation statements)

References 62 publications

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“…Health professionals must offer patients emotional support and information to help them cope with a changed life perspective. 47,48 Closely intertwined with this is the unmet need for information about what services are available and what could be useful in the actual situation even if not noticed by professionals. 13,14 Role of palliative care in service improvement…”

Section: Discussionmentioning

confidence: 99%

Unmet Needs of Patients Feeling Severely Affected by Multiple Sclerosis in Germany: A Qualitative Study

Galushko

Golla²,

Strupp³

et al. 2014

Journal of Palliative Medicine

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Background: The needs of patients feeling severely affected by multiple sclerosis (MS) have rarely been investigated. However this is essential information to know before care can be improved, including adding palliative care (PC) services where helpful. Since it remains unclear at what point specialized palliative care should begin for this patient group, this study focuses on needs in general. Objective: The objective was to explore the subjectively unmet needs of patients feeling severely affected by MS. Methods: The study used a qualitative cross-sectional approach for needs assessment. Fifteen patients selfreporting feeling severely affected by MS were recruited and interviewed using a combination of purposive and convenience sampling (five were accompanied by a caregiver relative). Interviews were recorded and transcribed verbatim, followed by qualitative content analysis. Results: Unmet needs were identified in the main categories ''support of family and friends,'' ''health care services,'' ''managing everyday life,'' and ''maintaining biographical continuity.'' Patients expressed the desire for more support from their families and to be viewed as distinct individuals. They see a substantial deficit in the physician-patient relationship and in the coordination of services. A decrease in expressed unmet needs was found for patients more severely affected and less socially integrated. Conclusions: To address the unmet needs of severely affected MS patients, health care services need to be improved and linked with existing PC services. Special attention is required to form supporting professionalpatient relationships. Multiprofessional services should be accessible for patients, while integrating relatives. All services should have an individual approach to provide needs-tailored support.

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Section: Discussionmentioning

confidence: 99%

Unmet Needs of Patients Feeling Severely Affected by Multiple Sclerosis in Germany: A Qualitative Study

Galushko

Golla²,

Strupp³

et al. 2014

Journal of Palliative Medicine

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“…The first version of the questionnaire was developed by the research team based on previous studies 2,7,15 and pilot tested with six health care professionals (nurse, psychotherapist, neurologist, case manager, physiotherapist, and social worker) to affirm the comprehensibility of the questionnaire and usefulness of the response options. The pilot test resulted in some items being restructured for clarity and modifying the wording of some statements.…”

Section: Methodsmentioning

confidence: 99%

“…More than half of cases of depression among patients with MS go undiagnosed. 6 Our research showed that patients with MS are interested in communicating about issues concerning death and dying, 7,8 especially since the burden of the disease can sometimes produce suicidal ideation 9 as reflected in alarming rates of euthanasia and assisted suicide for patients with MS. 10,11 MS may be complicated by cognitive impairment, swallowing, or speech problems. Managing MS requires assistance from a wide range of health care specialists throughout the patient's life.…”

mentioning

confidence: 89%

“…Patients severely affected by MS have an interest in communicating about issues concerning death and dying especially because of the severity of their problems as well as the progressive nature of severe MS. 7 Palliative care integration should be considered when communication about the progression of the disease and advance care planning are necessary.…”

Section: (Expanded Disability Status Scale [Edss]mentioning

confidence: 99%

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Palliative Care for Severely Affected Patients with Multiple Sclerosis: When and Why? Results of a Delphi Survey of Health Care Professionals

Strupp

Romotzky

Galushko

et al. 2014

Journal of Palliative Medicine

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Background: Patients severely affected by multiple sclerosis (MS) present with complex symptoms and needs requiring an interdisciplinary care approach. Objective: Analysis of when and why specialized palliative care integration would be beneficial via examining health care professionals' attitudes. Design: A two-round online Delphi study and expert workshop were undertaken and analyzed descriptively. Setting/Subjects: Following an extensive online search, 164 professionals with expertise in treating and caring for severely affected patients with MS were contacted. Professionals included neurologists, urologists, general practitioners, MS nurses, speech therapists, physiotherapists, psychologists, and palliative care physicians. Forty-six consented to participate: 33 of 46 (71.4%) and 15 of 33 (45.5%) experts responded in the first and second round, respectively. Results: Consensus was reached among all respondents (100%) defining the term ''severely affected'': 78.8% and 86.7%, respectively, thought that specialized palliative care should begin once the disease has progressed (Expanded Disability Status Scale [EDSS] > 6 and nursing care required). When the need exists for communication about disease progression (93.3%), psychological support (93.3%), relatives support (93.3%), and pain medication (86.7%) specialized palliative care should be consulted. Specialized palliative homecare was rated (93.3%) ''very important.'' The workshop documented the paucity of home visits and specialized MS care in nursing homes. Conclusions: Our results clearly identified specific areas in which palliative care will likely prove to be a valuable asset in the treatment course of MS. This information should serve clinicians, indicating when to consider palliative care services and help further reduce or eliminate uncertainty about how palliative care can be integrated in the course of MS.

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“…The palliative care approach provides for looking after these aspects as well by involving the relatives and having an accurate and continuous communication and information exchange [24]. The ultimate goal of palliative approach must consist in improving the quality of assistance by reducing hospitalization and emergency admissions [25], hence the achievement of greater appropriateness and efficiency.…”

Section: General Features Of Palliative Care In Nervous System Diseasesmentioning

confidence: 99%

Need for palliative care for neurological diseases

et al. 2016

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The new concept of palliative care supports the idea of palliation as an early approach to patients affected by disabling and life-limiting disease which focuses on the patient's quality of life along the entire course of disease. This model moves beyond the traditional concept of palliation as an approach restricted to the final stage of disease and widens the fields of intervention. There is a growing awareness of the importance of palliative care not only in oncological diseases but also in many other branches of medicine, and it appears particularly evident in the approach to many of the most frequent neurological diseases that are chronic, incurable and autonomy-impairing illnesses. The definition and implementation of palliative goals and procedures in neurology must take into account the specific features of these conditions in terms of the complexity and variability of symptoms, clinical course, disability and prognosis. The realization of an effective palliative approach to neurological diseases requires specific skills and expertise to adapt the concept of palliation to the peculiarities of these diseases; this approach should be realized through the cooperation of different services and the action of a multidisciplinary team in which the neurologist should play a central role to identify and face the patient's needs. In this view, it is paramount for the neurologist to be trained in these issues to promote the integration of palliative care in the care of neurological patients.

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Patients feeling severely affected by multiple sclerosis: How do patients want to communicate about end-of-life issues?

Cited by 70 publications

References 62 publications

Unmet Needs of Patients Feeling Severely Affected by Multiple Sclerosis in Germany: A Qualitative Study

Unmet Needs of Patients Feeling Severely Affected by Multiple Sclerosis in Germany: A Qualitative Study

Palliative Care for Severely Affected Patients with Multiple Sclerosis: When and Why? Results of a Delphi Survey of Health Care Professionals

Need for palliative care for neurological diseases

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