Semin Neurol 2024; 44(05): 551-558
DOI: 10.1055/s-0044-1788725
Review Article

Sustaining Joy in Serious Neurologic Illnesses

Sandhya Seshadri
1   Department of Neurology, Center for Health and Technology, University of Rochester Medical Center, Rochester, New York
,
Joshua Hauser
2   Northwestern Feinberg School of Medicine, Chicago, Illinois
3   Palliative Medicine, Jesse Brown VA Medical Center, Chicago, Illinois
,
Benzi M. Kluger
1   Department of Neurology, Center for Health and Technology, University of Rochester Medical Center, Rochester, New York
4   Department of Medicine-Palliative Care, University of Rochester Medical Center, Rochester, New York
› Author Affiliations
Funding Dr. Kluger have received support for this work from the National Institutes of Health/National Institute on Aging (NIH/NIA K02 AG062745).

Abstract

The goals of medicine tend to be framed around addressing suffering, pathology, and functional deficits. While this is a natural orientation when dealing with serious illness, it is also incomplete and neglects significant opportunities to improve the quality of life of patients, families, and clinicians. The “total enjoyment of life” is a multidimensional framework that can serve as a positive counterbalance to the “total pain of illness.” It allows clinicians, researchers, policymakers, and other stakeholders to take a systematic and comprehensive approach to the active promotion of well-being. The five opportunities for enhancing well-being in this framework are meaning, social connections, happiness/contentment, spiritual transcendence, and pleasure. Applying these concepts in clinical settings, patients, families, and clinicians can together find opportunities to increase the total enjoyment of life in the face of incurable and intractable illnesses. For family care partners, these concepts can be applied to improve self-care, enhance relationships, and develop more creative approaches to supporting a loved one living with illness. Clinicians working with these concepts may find their clinical work more satisfying and impactful and can also apply these concepts to their own lives to increase wellness. In clinical research, this framework can be applied to improve intervention effectiveness and relevance of outcome measures. Lastly, these concepts have the potential to impact public health approaches that focus on well-being and flourishing as the goal and metric of a healthy society.



Publication History

Article published online:
02 August 2024

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  • References

  • 1 Hanson MJ, Callahan D. eds. The Goals of Medicine: The Forgotten Issue in Health Care Reform. Georgetown University Press;; 1999
  • 2 Rustoen T. Hope: a health promotion resource. In: Haugan G, Eriksson M. eds. Health Promotion in Health Care - Vital Theories and Research. 2021: 61-70
  • 3 Engel GL. The need for a new medical model: a challenge for biomedicine. Science 1977; 196 (4286) 129-136
  • 4 Clark D. ‘Total pain’, disciplinary power and the body in the work of Cicely Saunders, 1958-1967. Soc Sci Med 1999; 49 (06) 727-736
  • 5 Starfield B. Is patient-centered care the same as person-focused care?. Perm J 2011; 15 (02) 63-69
  • 6 Kluger BM, Garvan CW, Holloway RG. Joy, suffering, and the goals of medicine. JAMA Neurol 2021; 78 (03) 265-266
  • 7 The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995; 41 (10) 1403-1409
  • 8 Brokerhof IM, Ybema JF, Bal PM. Illness narratives and chronic patients' sustainable employability: the impact of positive work stories. PLoS One 2020; 15 (02) e0228581
  • 9 Lou VW, Cheng CYM, Yu DSF. et al. Meaning making as a lifebuoy in dementia caregiving: predicting depression from a generation perspective using a fuzzy-set qualitative comparative analysis. Int J Environ Res Public Health 2022; 19 (23) 15711
  • 10 van Zyl LE, Custers NCM, Dik BJ, van der Vaart L, Klibert J. The Holistic Life-Crafting Model: a systematic literature review of meaning-making behaviors. Front Psychol 2023; 14: 1271188
  • 11 Wulandari BT, Rochmawati E. Effectiveness of dignity therapy on well-being among patients under palliative care: a systematic review and meta-analysis. Int J Nurs Stud 2024; 149: 104624
  • 12 Farley H. Promoting self-efficacy in patients with chronic disease beyond traditional education: a literature review. Nurs Open 2019; 7 (01) 30-41
  • 13 Parker D, Mills S, Abbey J. Effectiveness of interventions that assist caregivers to support people with dementia living in the community: a systematic review. Int J Evid-Based Healthc 2008; 6 (02) 137-172
  • 14 Kluger BM, Arnold RM. The total enjoyment of life: a framework for exploring and supporting the positive in palliative care. J Palliat Med 2023; 26 (10) 1322-1326
  • 15 Quoidbach J, Mikolajczak M, Gross JJ. Positive interventions: an emotion regulation perspective. Psychol Bull 2015; 141 (03) 655-693
  • 16 Periyakoil VS, Neri E, Kraemer H. Common items on a bucket list. J Palliat Med 2018; 21 (05) 652-658
  • 17 Zarit SH, Todd PA, Zarit JM. Subjective burden of husbands and wives as caregivers: a longitudinal study. Gerontologist 1986; 26 (03) 260-266
  • 18 de Wit J, Bakker LA, van Groenestijn AC. et al. Caregiver burden in amyotrophic lateral sclerosis: a systematic review. Palliat Med 2018; 32 (01) 231-245
  • 19 Maguire R, Maguire P. Caregiver burden in multiple sclerosis: recent trends and future directions. Curr Neurol Neurosci Rep 2020; 20 (07) 18
  • 20 Aamodt WW, Kluger BM, Mirham M. et al. Caregiver burden in Parkinson disease: a scoping review of the literature from 2017–2022. J Geriatr Psychiatry Neurol 2024; 37 (02) 96-113
  • 21 Rigby H, Gubitz G, Phillips S. A systematic review of caregiver burden following stroke. Int J Stroke 2009; 4 (04) 285-292
  • 22 Seshadri S, Sugiura K, Mirham M, Aamodt WW, Kluger BM. Spirituality and spiritual distress in Parkinson's disease caregivers: a scoping review. J Relig Health 2023; 62 (06) 4222-4243
  • 23 Bhasin SK, Bharadwaj IU. Perceptions and meanings of living with Parkinson's disease: an account of caregivers lived experiences. Int J Qual Stud Health Well-being 2021; 16 (01) 1967263
  • 24 Zarit SH. Positive Aspects of Caregiving: More Than Looking on the Bright Side. Taylor & Francis;; 2012: 673-674
  • 25 Yu DSF, Cheng S-T, Wang J. Unravelling positive aspects of caregiving in dementia: an integrative review of research literature. Int J Nurs Stud 2018; 79: 1-26
  • 26 Shim B, Barroso J, Davis LL. A comparative qualitative analysis of stories of spousal caregivers of people with dementia: negative, ambivalent, and positive experiences. Int J Nurs Stud 2012; 49 (02) 220-229
  • 27 Wang J, Li X, Liu W. et al. The positive aspects of caregiving in dementia: a scoping review and bibliometric analysis. Front Public Health 2022; 10: 985391
  • 28 Conroy É, Kennedy P, Heverin M, Hardiman O, Galvin M. Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods study. BMJ Open 2023; 13 (01) e064254
  • 29 Seshadri S, Contento A, Sugiura K, Abendroth M, Macchi Z, Kluger BM. Parkinson's disease carepartners' perceptions of the challenges and rewards of caregiving. Am J Hosp Palliat Care 2024; 10 499091231223739
  • 30 Cottrell L. Joy and happiness: a simultaneous and evolutionary concept analysis. J Adv Nurs 2016; 72 (07) 1506-1517
  • 31 Chai HZ, Krishna LKR, Wong VHM. Feeding: what it means to patients and caregivers and how these views influence Singaporean Chinese caregivers' decisions to continue feeding at the end of life. Am J Hosp Palliat Care 2014; 31 (02) 166-171
  • 32 Moskowitz JT, Cheung EO, Snowberg KE. et al. Randomized controlled trial of a facilitated online positive emotion regulation intervention for dementia caregivers. Health Psychol 2019; 38 (05) 391-402
  • 33 McAndrew NS, Gray TF, Wallace L. et al. Existential distress in family caregivers: scoping review of meaning-making interventions. BMJ Support Palliat Care 2024; 13 (e3): e676-e685
  • 34 Butcher HK, Buckwalter KC. Exasperations as blessings: meaning-making and the caregiving experience. J Aging Identity 2002; 7: 113-132
  • 35 Delle Fave A, Bassi M, Allegri B. et al. Beyond disease: happiness, goals, and meanings among persons with multiple sclerosis and their caregivers. Front Psychol 2017; 8: 2216
  • 36 Hodge DR, Sun F. Positive feelings of caregiving among Latino Alzheimer's family caregivers: understanding the role of spirituality. Aging Ment Health 2012; 16 (06) 689-698
  • 37 Gilmartin HM, Saint S. Finding joy in medicine: a remedy for challenging times. NEJM Catal 2022;3(05):
  • 38 Serwint JR, Stewart MT. Cultivating the joy of medicine: a focus on intrinsic factors and the meaning of our work. Curr Probl Pediatr Adolesc Health Care 2019; 49 (12) 100665
  • 39 Fitzpatrick B, Bloore K, Blake N. Joy in work and reducing nurse burnout: from triple aim to quadruple aim. AACN Adv Crit Care 2019; 30 (02) 185-188
  • 40 Shanafelt TD, Hasan O, Dyrbye LN. et al. Changes in Burnout and Satisfaction with Work-Life Balance in Physicians and the General US Working Population between 2011 and 2014. Elsevier; 2015: 1600-1613
  • 41 Feeley D, Swensen SJ. Restoring joy in work for the healthcare workforce. It's more than just reducing burnout. Healthc Exec 2016; 31 (05) 70-71
  • 42 Quinn M, Fowler KE, Harrod M. et al. Exploring sacred moments in hospitalized patients: an exploratory qualitative study. J Gen Intern Med 2023; 38 (09) 2038-2044
  • 43 Boggiss AL, Consedine NS, Brenton-Peters JM, Hofman PL, Serlachius AS. A systematic review of gratitude interventions: effects on physical health and health behaviors. J Psychosom Res 2020; 135: 110165
  • 44 Day G, Robert G, Rafferty AM. Gratitude in health care: a meta-narrative review. Qual Health Res 2020; 30 (14) 2303-2315
  • 45 Cherry K. Toxic Positivity—Why It's Harmful and What to Say Instead. Dotdash Media, Inc. Accessed July 16, 2024 at: https://www.verywellmind.com/what-is-toxic-positivity-5093958
  • 46 Shipp HG, Hall KC. Analyzing the concept of toxic positivity for nursing: a dimensional analysis approach. J Adv Nurs 2024; 80 (08) 3146-3157
  • 47 Cross KL. Platitudes and toxic positivity. J Palliat Med 2022; 25 (08) 1168-1169
  • 48 Sheldon KM, King L. Why positive psychology is necessary. Am Psychol 2001; 56 (03) 216-217
  • 49 Fredrickson BL. What good are positive emotions?. Rev Gen Psychol 1998; 2 (03) 300-319
  • 50 Folkman S. Positive psychological states and coping with severe stress. Soc Sci Med 1997; 45 (08) 1207-1221
  • 51 Mendelson A, Bandfield B, Hevezi J, Gable J, Davidson JE, Buckholz G. Using Photographs to bring dignity to patients and help clinicians find meaning and joy in work. J Palliat Med 2023; 26 (02) 165-174
  • 52 Lee OJ, Pilkington FB. Practice with persons living their dying: a human becoming perspective. Nurs Sci Q 1999; 12 (04) 324-328
  • 53 Haugan G, Rinnan E, Espnes GA, Drageset J, Rannestad T, André B. Development and psychometric properties of the Joy-of-Life Scale in cognitively intact nursing home patients. Scand J Caring Sci 2019; 33 (04) 801-814
  • 54 Egloff B, Schmukle SC, Burns LR, Kohlmann CW, Hock M. Facets of dynamic positive affect: differentiating joy, interest, and activation in the positive and negative affect schedule (PANAS). J Pers Soc Psychol 2003; 85 (03) 528-540
  • 55 Ihara ES, Tompkins CJ, Inoue M, Sonneman S. Results from a person-centered music intervention for individuals living with dementia. Geriatr Gerontol Int 2019; 19 (01) 30-34
  • 56 Dick-Niederhauser A. Therapeutic change and the experience of joy: Toward a theory of curative processes. J Psychother Integration 2009; 19 (02) 187-211
  • 57 Augustin M, Radtke MA, Zschocke I. et al. The patient benefit index: a novel approach in patient-defined outcomes measurement for skin diseases. Arch Dermatol Res 2009; 301 (08) 561-571
  • 58 Ruble L, McGrew JH, Toland MD. Goal attainment scaling as an outcome measure in randomized controlled trials of psychosocial interventions in autism. J Autism Dev Disord 2012; 42 (09) 1974-1983
  • 59 Cameron DS, Bertenshaw EJ, Sheeran P. Positive affect and physical activity: Testing effects on goal setting, activation, prioritisation, and attainment. Psychol Health 2018; 33 (02) 258-274
  • 60 Cameron DS, Bertenshaw EJ, Sheeran P. The impact of positive affect on health cognitions and behaviours: a meta-analysis of the experimental evidence. Health Psychol Rev 2015; 9 (03) 345-365
  • 61 Sridharan K, Sivaramakrishnan G. Therapeutic clowns in pediatrics: a systematic review and meta-analysis of randomized controlled trials. Eur J Pediatr 2016; 175 (10) 1353-1360
  • 62 McKee LG, Algoe SB, Faro AL, O'Leary JL, O'Neal CW. Picture this! Bringing joy into focus and developing healthy habits of mind: rationale, design, and implementation of a randomized control trial for young adults. Contemp Clin Trials Commun 2019; 15: 100391
  • 63 Layard R, De Neve JE. Wellbeing Science and Policy Introduction and Summary. Wellbeing.; 2023: 1