Advertisement

Challenges facing palliative neurology practice: A qualitative analysis

Published:December 07, 2017DOI:https://doi.org/10.1016/j.jns.2017.12.008

      Highlights

      • Palliative neurology has variability, communication barriers, threats to personhood.
      • Palliative neurology challenges: uncertainty, inconsistency, existential distress
      • Barriers may be overcome by further research and training in palliative neurology.

      Abstract

      Purpose

      This study aimed to develop a conceptual understanding of the specific characteristics of palliative care in neurology and the challenges of providing palliative care in the setting of neurological illness.

      Method

      The study was conducted at London Health Sciences Centre in Canada using grounded theory methodology. Qualitative thematic analysis was applied to focus group (health care providers physicians, nursing, allied health, trainees) and semi-structured interview (patient-caregiver dyads) data to explore challenges facing the delivery of palliative care in neurology.

      Results

      Specific characteristics of neurological disease that affect palliative care in neurology were identified: 1) timelines of disease progression, 2) barriers to communication arising from neurologic disease, 3) variability across disease progression, and 4) threat to personhood arising from functional and cognitive impairments related to neurologic disease. Moreover, three key challenges that shaped and complicated palliative care in neurology were identified: 1) uncertainty with respect to prognosis, support availability and disease trajectory, 2) inconsistency in information, attitudes and skills among care providers, care teams, caregivers and families, and 3) existential distress specific to neurological disease, including emotional, psychological and spiritual distress resulting from loss of function, autonomy and death. These challenges were experienced across groups, but manifested themselves in different ways for each group.

      Conclusions

      Further research regarding prognosis, improved identification of patients with palliative care needs, developing an approach to palliative care delivery within neurology and the creation of more robust educational resources for teaching palliative neurology are expected to improve neurologists' comfort with palliative care, thereby enhancing care delivery in neurology.

      Keywords

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Journal of the Neurological Sciences
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Gofton T.E.
        • Jog M.S.
        • Schulz V.A.
        Palliative approach to neurological care: a literature review.
        Can. J. Neurol. Sci. 2009; 36: 296-302
        • Boersma I.
        • Miyasaki J.
        • Kutner J.
        • Kluger B.
        Palliative care and neurology: time for a paradigm shift.
        Neurology. 2014; 83: 561-567
        • Dallara A.
        • Tolchin D.W.
        Emerging subspecialties in neurology: palliative care.
        Neurology. 2014; 82: 640-642
      1. Canada RCoPaSo (Accessed March 3). Objectives of Training in Neurology [online].

      2. Education ACfGM (Accessed March 3). Neurology Program Requirements [online].

        • Creutzfeldt C.J.
        • Gooley T.
        • Walker M.
        Are neurology residents prepared to deal with dying patients?.
        Arch. Neurol. 2009; 66: 1427-1428
        • Khot S.
        • Billings M.
        • Owens D.
        • Longstreth Jr., W.T.
        Coping with death and dying on a neurology inpatient service: death rounds as an educational initiative for residents.
        Arch. Neurol. 2011; 68: 1395-1397
        • Diamond E.L.
        • Russell D.
        • Kryza-Lacombe M.
        • et al.
        Rates and risks for late referral to hospice in patients with primary malignant brain tumors.
        Neuro-Oncology. 2016; 18: 78-86
        • Sethi S.
        • DePold Hohler A.
        The Application of Palliative Care Principles in Advanced Parkinson's Disease. Advances in Parkinson's Disease.
        vol. 5. 2016 (Article ID:72177,72114 pages)
        • Creutzfeldt C.J.
        • Longstreth W.T.
        • Holloway R.G.
        Predicting decline and survival in severe acute brain injury: the fourth trajectory.
        BMJ. 2015; 351: h3904
        • Charmaz K.
        Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis.
        SAGE Publications Ltd., London, UK.2006
        • Holloway R.G.
        • Gramling R.
        • Kelly A.G.
        Estimating and communicating prognosis in advanced neurologic disease.
        Neurology. 2013; 80: 764-772
        • Siouta N.
        • van Beek K.
        • Preston N.
        • et al.
        Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease: a systematic literature review of European guidelines and pathways.
        BMC Palliat Care. 2016; 15: 18
        • Weisbord S.D.
        • Carmody S.S.
        • Bruns F.J.
        • et al.
        Symptom burden, quality of life, advance care planning and the potential value of palliative care in severely ill haemodialysis patients.
        Nephrol. Dial. Transplant. 2003; 18: 1345-1352
        • Sinuff T.
        • Dodek P.
        • You J.J.
        • et al.
        Improving end-of-life communication and decision making: the development of a conceptual framework and quality indicators.
        J. Pain Symptom Manag. 2015; 49: 1070-1080
        • Schutz R.E.
        • Coats H.L.
        • Engelberg R.A.
        • Curtis J.R.
        • Creutzfeldt C.J. Is
        There hope? Is she there? How families and clinicians experience severe acute brain injury.
        J. Palliat. Med. 2017; 20: 170-176
        • Mori M.
        • Shimizu C.
        • Ogawa A.
        • Okusaka T.
        • Yoshida S.
        • Morita T.A.
        National Survey to systematically identify factors associated with oncologists' attitudes toward end-of-life discussions: what determines timing of end-of-life discussions?.
        Oncologist. 2015; 20: 1304-1311
        • Granek L.
        • Krzyzanowska M.K.
        • Tozer R.
        • Mazzotta P.
        Oncologists' strategies and barriers to effective communication about the end of life.
        J Oncol Pract. 2013; 9: e129-135
        • Visser M.
        • Deliens L.
        • Houttekier D.
        Physician-related barriers to communication and patient- and family-centred decision-making towards the end of life in intensive care: a systematic review.
        Crit. Care. 2014; 18: 604
        • Curtis J.R.
        Communicating about end-of-life care with patients and families in the intensive care unit.
        Crit. Care Clin. 2004; 20 (viii): 363-380