The World Health Organization defines palliative care by its focus on improving quality of life (QOL). Although reducing suffering is part of improving QOL, it should not be the sole focus of our efforts. Opportunities for joy, meaning, love, and growth exist in the midst of serious illness and should be explored and supported even in the face of suffering. Intentionally focusing on these outcomes expands provider's toolset for improving QOL, creates opportunities to better understand, celebrate, and support the full humanity of the person in front of us, and may increase the satisfaction of practice for clinicians. The “Total Enjoyment of Life” provides a framework for reminding clinicians to systematically address positive outcomes. This framework can also be used to suggest clinical strategies for promoting positive outcomes and expanding the scope of interventions and outcomes to be considered in clinical research.
KlugerBM, GarvanCW, HollowayRG. Joy, suffering, and the goals of medicine. JAMA Neurol, 2021; 78(3):265–266.
3.
The World Health Organization Quality of Life assessment (WHOQOL): Position paper from the World Health Organization. Soc Sci Med, 1995; 41:1403–1409.
4.
LamaD, TutuD, AbramsD.The Book of Joy: Lasting Happiness in a CHanging World. Avery: New York, NY, USA; 2016.
5.
BloomP.The Sweet Spot, First ed. HarperCollins Publishers: New York, NY, USA; 2021.
6.
Hakansson EklundJ, HolmstromIK, KumlinT, et al.“Same same or different?” A review of reviews of person-centered and patient-centered care. Patient Educ Couns, 2019; 102:3–11.
7.
PeriyakoilVS, NeriE, KraemerH. Common items on a bucket list. J Palliat Med, 2018; 21:652–658.
8.
TeraoT, SatohM. The present state of existential interventions within palliative care. Front Psychiatry, 2021; 12:811612.
9.
TerrillAL, EllingtonL, JohnKK, et al.Positive emotion communication: Fostering well-being at end of life. Patient Educ Couns, 2018; 101:631–638.
10.
JesteDV, PalmerBW, RettewDC, et al.Positive psychiatry: Its time has come. J Clin Psychiatry, 2015; 76:675–683.
11.
YalomID, YalomM.A Matter of Death and Life. Redwood Press: Standord, CA, USA; 2021.
12.
CassellEJ.The Nature of Suffering and the Goals of Medicine, 2nd ed. Oxford University Press: New York, NY, USA; 2004.
13.
ClarkD.‘Total pain’, disciplinary power and the body in the work of Cicely Saunders, 1958–1967. Soc Sci Med, 1999; 49:727–736.
14.
YalomID.The Schopenhauer Cure. HarperCollins Publishers: New York, NY, USA; 2005.
15.
HayesSC, StrosahlKD, WilsonKG. Acceptance and Commitment Therapy: The Process and Practice of Mindful Change. The Guilford Press: New York, NY, USA; 2012.
16.
NelsonC.Appreciating gratitude: Can gratitude be used as a psychological intervention to improve individual well-being?. Counsel Psychol, 2009; 24:38–50.
17.
JacobsenJ, JacksonV, GreerJ, TemelJ.What's in the Syringe? Principles of Early Integrated Palliative Care. Oxford University Press: New York, NY, USA; 2021.
18.
GoodmanW.Toxic Positivity: Keeping It Real in a World Obsessed with Being Happy. Penguin Publishing Group: New York, NY, USA; 2022.
19.
OlssonL, OstlundG, StrangP, et al.The glimmering embers: Experiences of hope among cancer patients in palliative home care. Palliat Support Care, 2011; 9:43–54.
20.
PenmanJ.Finding paradise within: How spirituality protects palliative care clients and caregivers from depression. J Holist Nurs, 2018; 36:243–254.
21.
LeeOJ, PilkingtonFB. Practice with persons living their dying: A human becoming perspective. Nurs Sci Q, 1999; 12:324–328.
22.
WiebeE, ShawJ, GreenS, et al.Reasons for requesting medical assistance in dying. Can Fam Physician, 2018; 64:674–679.
23.
KlugerBM.Medical aid in living. JAMA Neurol, 2020; 77:1349–1350.
BockM, KatzM, SillauS, et al.What's in the Sauce? The specific benefits of palliative care for Parkinson's disease. J Pain Symptom Manage, 2022; 63(6):1031–1040.
26.
MoskowitzJT, CheungEO, SnowbergKE, et al.Randomized controlled trial of a facilitated online positive emotion regulation intervention for dementia caregivers. Health Psychol, 2019; 38:391–402.
27.
BradleyN, Lloyd-WilliamsM, DowrickC. Effectiveness of palliative care interventions offering social support to people with life-limiting illness—A systematic review. Eur J Cancer Care (Engl), 2018; 27:e12837.
28.
HauganG, RinnanE, EspnesGA, et al.Development and psychometric properties of the Joy-of-Life Scale in cognitively intact nursing home patients. Scand J Caring Sci, 2019; 33:801–814.
29.
EgloffB, SchmukleSC, BurnsLR, et al.Facets of dynamic positive affect: Differentiating joy, interest, and activation in the positive and negative affect schedule (PANAS). J Pers Soc Psychol, 2003; 85:528–540.
30.
IharaES, TompkinsCJ, InoueM, et al.Results from a person-centered music intervention for individuals living with dementia. Geriatr Gerontol Int, 2019; 19:30–34.
31.
Dick-NiederhauserA.Therapeutic change and the experience of joy: Toward a theory of curative processes. J Psychother Integr, 2009; 19:187–211.
32.
AugustinM, RadtkeMA, ZschockeI, et al.The patient benefit index: A novel approach in patient-defined outcomes measurement for skin diseases. Arch Dermatol Res, 2009; 301:561–571.
33.
RubleL, McGrewJH, TolandMD. Goal attainment scaling as an outcome measure in randomized controlled trials of psychosocial interventions in autism. J Autism Dev Disord, 2012; 42:1974–1983.
34.
SridharanK, SivaramakrishnanG. Therapeutic clowns in pediatrics: A systematic review and meta-analysis of randomized controlled trials. Eur J Pediatr, 2016; 175:1353–1360.
KavalieratosD, MitchellEM, CareyTS, et al.“Not the ‘grim reaper service’”: An assessment of provider knowledge, attitudes, and perceptions regarding palliative care referral barriers in heart failure. J Am Heart Assoc, 2014; 3:e000544.
37.
BackAL, GrantMS, McCabePJ. Public messaging for serious illness care in the age of coronavirus disease: Cutting through misconceptions, mixed feelings, and distrust. J Palliat Med, 2021; 24:816–819.
38.
GilmartinHM, SaintS. Finding joy in medicine: A remedy for challenging times. NEJM Catalyst Innovat Care Deliv 2022. Available from: https://catalyst.nejm.org/doi/full/10.1056/CAT.22.0215 [Last accessed: July18, 2023].
