Author of

• 35357

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  ES20 - Evidence Base for Symptom Management (ID 150)

  • Event: WCLC 2020
  • Type: Educational Session
  • Track: Palliative and Supportive Care
  • Presentations: 1
  • Moderators:
  • Coordinates: 1/31/2021, 09:15 - 10:15, Scientific Program Auditorium

  • 35360

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    ES20.03 - Fatigue (ID 3959)

    09:15 - 10:15  |  Presenting Author(s): Deidre Morgan
    • Abstract
    • Presentation
    • Slides

    Abstract
    

    Clinicians and patients each bring our own world view to clinician-patient interactions - consciously and unconsciously. As clinicians, this influences how we assess and treat the patients in our care. Likewise, our patients’ worldviews and beliefs influence their illness experience. This presentation will explore the different perspectives of clinicians and patients about fatigue at the end of life. It examines implications for patient-centred care within the emerging context of medically assisted dying and concludes with practical recommendations for patient centred care.

    People with advanced lung cancer experience significant and debilitating fatigue. Cancer related fatigue is multimodal, affecting physical and cognitive function along with emotional states. Aetiology is complex and fatigue is experienced across the whole disease trajectory.¹ Cancer related fatigue is defined as persistent, subjectively experienced, not relieved by rest and disproportionate to activity levels.² Self-report of fatigue is considered the gold standard of assessment. A number of standardised assessment tools are available to assess fatigue.¹ These assessments use patient self-report to measure characteristics of fatigue about how the intensity and severity of everyday symptoms impact an individual’s physical, cognitive and emotional functioning. Identification of these characteristics informs clinical interventions. However, does self-report by standardised assessments really capture what is important to the patients at the end-of-life? Do we seek self-report primarily about factors that may be modifiable by pharmacological and non-pharmacological modes of treatment?³

    Reports from MAID (Medical Assistance In Dying)⁴ in Canada and ‘Death With Dignity’⁵in Oregon provide us with valuable insights into what really matters for patients at the end of life. The top 2 cited reasons that lead to unbearable suffering for Canadian people were a). loss of ability to engage in meaningful activities and b). loss of ability to perform activities of daily living. In other words, people chose to end their lives because they could not engage in meaningful or essential everyday activities or were fearful of losing the ability to do so. This is supported by the Oregon reports which cite reduced ability to engage in enjoyable life activities as the top reason for ending one’s life (90.4%) and the second top reason, loss of autonomy (86.7%). Uncontrolled symptoms or fear of uncontrolled symptoms (56.4%) was higher in the MAID report when compared to Oregon, but still falling significantly short of the most important reason for ending one’s life. So does the experience of fatigue influence decisions like this? While, there is limited research around how people with advanced lung cancer experience fatigue, we can glean understanding from people with advanced disease⁶ in general and also from COPD literature.⁷ Findings support what we see in the MAID and Death with Dignity reports. Fatigue causes people to feel trapped in their bodies and unable to do what they consider to be important. People with advanced lung cancer may experience multiple symptoms at one time which affects how they experience fatigue and the meaning they attach to fatigue and other symptoms like breathlessness.⁸ There is an imperative for clinicians to understand the meaning patients ascribe to living with progressive and debilitating fatigue as death approaches and use this to also inform treatment.

    However, clinicians are faced with the challenge of providing patient centred care with limited available time, complicated further by staffing and fiscal constraints. It is difficult to palliate symptoms and meet peoples’ needs for meaningful activity and connection with others in current health contexts. The Patient Dignity Question is being used in some settings to identify what is meaningful for patients in regards to their end-of-life care.⁹ It provides a means of quickly tapping in to priorities that help busy clinicians direct meaning-centred care. While this presentation has focused on the different perspectives that clinicians and patients bring to the illness experience, the role of symptom management must be acknowledged. Participation in meaningful activities and social connection is rated highly by patients; however, ability to do so is contingent upon effective symptom palliation.¹⁰ Both the clinicians and patient lens’ are valid. What is required is a more focused way of combining both perspectives. This presentation concludes with a call for clinicians to consider how they may identify what is meaningful for patients in their care and make a connection between meaning and management of symptoms like fatigue.

    References

    1. Carnio S, Di Stefano RF and Novello S. Fatigue in lung cancer patients: symptom burden and management of challenges. Lung Cancer (Auckl) 2016; 7: 73-82. 2017/02/18. DOI: 10.2147/lctt.S85334.

    2. Bower JE. Cancer-related fatigue--mechanisms, risk factors, and treatments. Nat Rev Clin Oncol 2014; 11: 597-609. 2014/08/13. DOI: 10.1038/nrclinonc.2014.127.

    3. Van Manen M. Modalities of body experience in illness and health. Qualitative Health Research 1998; 8: 7-24. DOI: 10.1177/104973239800800102.

    4. Health Canada. First Annual Report on Medical Assistance in Dying in Canada, 2019. July 2020 2019.

    5. Oregon Health Authority PHD. Oregon Death with Dignity Act, 2019 Data Summary. 2020.

    6. Lindqvist O, Widmark A and Rasmussen BH. Meanings of the phenomenon of fatigue as narrated by 4 patients with cancer in palliative care. Cancer Nursing 2004; 27: 237-243. Article. DOI: 10.1097/00002820-200405000-00010.

    7. Ek K and Ternestedt BM. Living with chronic obstructive pulmonary disease at the end of life: A phenomenological study. Journal of Advanced Nursing 2008; 62: 470-478. Article. DOI: 10.1111/j.1365-2648.2008.04611.x.

    8. Maguire R, Stoddart K, Flowers P, et al. An Interpretative Phenomenological Analysis of the lived experience of multiple concurrent symptoms in patients with lung cancer: A contribution to the study of symptom clusters. European Journal of Oncology Nursing 2014; 18: 310-315. Article. DOI: 10.1016/j.ejon.2014.02.004.

    9. Johnston B, Pringle J, Gaffney M, et al. The dignified approach to care: A pilot study using the patient dignity question as an intervention to enhance dignity and person-centred care for people with palliative care needs in the acute hospital setting. BMC Palliative Care 2015; 14: 9. DOI: 10.1186/s12904-015-0013-3.

    10. Morgan DD, Currow DC, Denehy L, et al. Living actively in the face of impending death: constantly adjusting to bodily decline at the end-of-life. BMJ Supportive & Palliative Care 2017; 7: 179-188. DOI: 10.1136/bmjspcare-2014-000744.

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