Show and Tell: Photography and Storytelling to Better Understand the End-of-Life Experience of Families in the Intensive Care Unit

Abstract

End-of-life in the Intensive Care Unit (ICU) is common, costly, and can contribute to negative health outcomes for bereaved family members. Insufficient understanding of the family experience results in poor quality, highly variable care riddled with deficiencies including effective identification and application of evidence-based clinical interventions. Successfully managing the multitude of transitions, for example changes in family role or personal identity requires creative practice guided by theory. This project supports the feasibility of using peri-mortem photographs captured by family members with story-telling and a standardized measurement of grief to explore the family experience of end-of-life in the ICU. Project findings reveal shared experiential themes and emphasize the value of photography and storytelling as meaning-making interventions for families. Further study to generalize findings and develop additional preventative and therapeutic interventions at and beyond end-of-life in the ICU is needed to better meet family needs and improve their health outcomes.

Keywords

end-of-life photography story-telling intensive care unit family

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References

Abshire

Dinglas

V. D.

Cajita

M. I.

Eakin

M. N.

Needham

D. M.

Himmelfarb

C. D.

(2017). Participant retention practices in longitudinal clinical research studies with high retention rates. BMC Medical Research Methodology, 17(1), 30. https://doi.org/10.1186/s12874-017-0310-z

Alvariza

Mjörnberg

Goliath

(2020). Palliative care nurses’ strategies when working in private homes- A photo-elicitation study. Journal of Clinical Nursing, 29(1–2), 139–151. https://doi.org/10.1111/jocn.15072.

American Psychological Association . (2023a). APA dictionary: Grief. https://dictionary.apa.org/grief?_ga=2.166042935.803983797.1681828817-974492387.1681828793

American Psychological Association . (2023b). Grief. https://www.apa.org/topics/grief

Barrett

M. L.

Smith

M. W.

Elixhauser

Honigman

L. S.

Pines

J. M.

(2014). Utilization of intensive care services, 2011. Healthcare Cost and Utilization Project. Agency for Healthcare Research and Quality, Statistical Brief #185, (n.p.).

Bates

M. J.

Mphwatiwa

Ardrey

Desmond

Niessen

L. W.

Squire

S. B.

(2018). Household concepts of wellbeing and the contribution of palliative care in the context of advanced cancer: A photovoice study from Blantyre, Malawi. Plos One, 13(8), Article e0202490. https://doi.org/10.1371/journal.pone.0202490

Beauchamp

T. L.

Childress

J. F.

(1994). Principles of biomedical ethics (4th ed.). Oxford University Press.

Benner

(2010). Foreword. In Meleis

A. I.

(Ed.). Transitions theory: Middle-range and situation-specific theories in nursing research and practice. Springer Publishing Company, LLC.

Berwick

D. M.

Nolan

T. W.

Whittington

(2008). The triple aim: Care, health, and cost. Health Affairs, 27(3), 759–769. https://doi.org/10.1377/hlthaff.27.3.759

10.

Bodenheimer

Sinsky

(2014). From triple to quadruple aim: Care of the patient requires care of the provider. The Annals of Family Medicine, 12(6), 573–576. https://doi.org/10.1370/afm.1713

11.

Boyd

Murray

S. A.

(2010). Recognising and managing key transitions in end of life care. BMJ, 341, c4863. https://doi.org/10.1136/bmj.c4863.

12.

Buser

T. J.

Buser

J. K.

Gladding

S. T.

(2005). Good grief: The part of arts in healing and grief. In Duffey

(Ed.), Creative interventions in grief and loss therapy: When the music stops, a dream dies (chapter 11). Haworth Press.

13.

Chen

Michaels

Meeker

M.A.

(2020). Family outcomes and perceptions of end-of-life care in the intensive care unit: A mixed-methods review. Journal of Palliative Care, 35(3), 143–153.

14.

Chick

Meleis

A.I.

(1986). Transitions: A nursing concern. In Chinn

P. L.

(ed.). Nursing research methodology: Issues and implantation. Aspen Publishers.

15.

Chinn

Jacobs

(1987). Theory and nursing: A systematic approach, (2nd ed.). Mosby.

16.

Clarke

E. B.

Curtis

J. R.

Luce

J. M.

Levy

Danis

Nelson

Solomon

M. Z.

Johnson

R. W.

Foundation Critical Care End-Of-Life Peer Workgroup Members . (2003). Quality indicators for end-of-life care in the intensive care unit. Critical Care Medicine, 31(9), 2255–2262. https://doi.org/10.1097/01.CCM.0000084849.96385.85

17.

Cleland

MacLeod

(2021). The visual vernacular: Embracing photographs in research. Perspectives in Medical Education, 10(4), 230–237. https://doi.org/10.1007/s40037-021-00672-x

18.

Combe

(2005). The use of patient diaries in an intensive care unit. Nursing In Critical Care, 10(1), 31–34. https://doi.org/10.1111/j.1362-1017.2005.00093.x

19.

Cook

Rocker

(2014). Dying with dignity in the intensive care unit. New England Journal of Medicine, 370(26), 2506–2514.

20.

Cubanski

Neuman

Griffins

Damico

(2016 July 14). Medicare spending at the end of life: A snapshot of beneficiaries who died in 2014 and the cost of their care. Kaiser Family Foundation. https://www.kff.org/medicare/issue-brief/medicare-spending-at-the-end-of-life/

21.

Davidson

J. E.

Aslakson

R. A.

Long

A. C.

Puntillo

K. A.

Kross

E. K.

Hart

Cox

C. E.

Wunsch

Wickline

M. A.

Nunnally

M. E.

Netzer

Kentish-Barnes

Sprung

C. L.

Hartog

C. S.

Coombs

Gerritsen

R. T.

Hopkins

R. O.

Franck

L. S.

Skrobik

Curtis

J. R.

(2017). Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Critical Care Medicine, 45(1), 103–128. https://doi.org/10.1097/CCM.0000000000002169

22.

Dobbie

A. E.

Medrano

M. A.

Tysinger

J. W.

Olney

C. A.

(2003). The BELIEF instrument: A preclinical teaching tool to elicit patients' health beliefs. Family Medicine, 35(5), 316–319.

23.

Ducharme

(2000). Acute pain and pain control: State of the art. Annuls of Emergency Medicine, 35(6), 592–603. https://doi.org/10.1016/s0196-0644(00)70033-3

24.

Graham

(2015). The photograph reaches out: Uses of photographs of the dead in China. Mortality, 20(4), 351–374. https://doi.org/10.1080/13576275.2015.1083717

25.

Harding

Higginson

(2003). What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliative Medicine, 17(1), 63–74. https://doi.org/10.1191/0269216303pm667oa

26.

Hardy

M. E.

(1974). Theories: Components, development, evaluation. Nursing Research, 23(2), 100–107.

27.

Hartog

C. S.

Reinhart

(2018). Staff and family response to end-of-life care in the ICU. Current Opinions on Anesthesiology, 31(2), 195–200. https://doi.org/10.1097/ACO.0000000000000557

28.

Hemple

C. G.

(1965). Aspects of scientific explanation. Free Press.

29.

Hui

Nooruddin

Didwaniya

Dev

De La Cruz

Kim

S. H.

Kwon

J. H.

Hutchins

Liem

Bruera

(2014). Concepts and definitions for “actively dying”, “end of life”, “terminally ill”, “terminal care”, and “transition of care”: A systematic review. Journal of Pain Management, 47(1), 77–89. https://doi.org/10.1016/j.jpainsymman.2013.02.021

30.

Husted

G.L.

Husted

J.H.

(1994). Ethical decision making in nursing, (2nd ed.). Mosby.

31.

IBM Corp . (2022). IBM SPSS statistics for windows (Version 29.0) [Computer Software]. IBM Corp.

32.

Institute for Patient- and Family-Centered Care . (n.d.). Patient- and family-centered care. https://www.ipfcc.org/about/pfcc.html

33.

Institute of Medicine U.S. Committee on quality of health care in America . (2001). Crossing the quality chasm: A new health system for the 21st century. National Academy Press.

34.

Johansson

Wahlin

Magnusson

Runeson

Hanson

(2018). Family members’ experiences with intensive care unit diaries when the patient does not survive. Scandinavian Journal of Caring Sciences, 32(1), 2033–2040. https://doi.org/10.1111/scs.12454

35.

Kim

M. A.

Sang

Jung

(2021). A photovoice study on the bereavement experience of mothers after the death of a child. Death Studies, 45(5), 390–404. https://doi.org/10.1080/07481187.2019.1648333

36.

Kruser

J. M.

Aaby

D. A.

Stevenson

D. G.

Pun

B. T.

Balas

M. C.

Barnes-Daly

M. A.

Harmon

Ely

E. W.

(2019). Assessment of variability in end-of-life care delivery in intensive care units in the United States. JAMA Network Open, 2(12), Article e1917344. https://doi.org/10.1001/jamanetworkopen.2019.17344

37.

Lanken

P. N.

Terry

P. B.

DeLisser

H. M.

Fahy

B. F.

Hansen- Flaschen

Heffner

J. E.

Levy

Mularski

R. A.

Osborne

M. L.

Prendergast

T. J.

Rocker

Sibbald

W. J.

Wilfond

Yankaskas

J. R.

On behalf of the ATS end-of-life task force . (2008). An official American thoracic society clinical policy statement: Palliative care for patients with respiratory diseases and critical illnesses. American Journal of Respiratory Care Medicine, 177(8), 912–927. https://doi.org/10.1164/rccm.200605-587ST

38.

Lautrette

Darmon

Megarbane

Joly

L. M.

Chevret

Adrie

Barnoud

Bleichner

Bruel

Choukroun

Curtis

J. R.

Fieux

Galliot

Garrouste-Orgeas

Georges

Goldgran-Toledano

Jourdain

Loubert

Reignier

Azoulay

(2007). A community strategy and brochure for relatives of patients dying in the ICU. New England Journal of Medicine, 356(5), 469–478. https://doi.org/10.1056/NEJMoa063446

39.

Levy

Grant

P. C.

Depner

R. M.

Tenzek

K. E.

Pailler

M. E.

Beaupin

L. K.

Breiser

J. M.

Byrwa

D. J.

(2019). The photographs of meaning program for pediatric palliative caregivers: Feasibility of a novel meaning-making intervention. American Journal of Hospice and Palliative Care, 36(7), 557–563. https://doi.org/10.1177/1049909118824560

40.

Levy

Grant

P. C.

Tenzek

K. E.

Depner

R. M.

Pailler

M. E.

Beaupin

L. K.

(2020). The experience of pediatric palliative caregiving: A qualitative analysis from the photographs of meaning program. American Journal of Hospice & Palliative Care, 37(5), 364–370. https://doi.org/10.1177/1049909119879413

41.

Luce

J. M.

(2010). End-of-life decision making in the intensive care unit. American Journal of Respiratory and Critical Care Medicine, 182(1),6–11. https://doi.org/10.1164/rccm.201001-0071CI

42.

Machin

(2001). Exploring a framework for understanding the range of response to loss; a study of clients receiving bereavement counselling. Unpublished PhD thesis. Keele University, UK.

43.

Martel

(2017). Bereavement photographs as family photographs: Findings from a phenomenological study on family experiences with neonatal end-of-life photography. The European Journal of Communication Research, 42(3), 309–326.

44.

Martel

Ives-Baine

(2018). Nurses’ experiences of end- of-life photography in NICU bereavement support. Journal of Pediatric Nursing, 42(1), e38–e44. https://doi.org/10.1016/j.pedn.2018.05.011

45.

Martel

S. L.

Ives-Baine

(2014). “Most prized possessions”: Photography as living relationships within the end-of-life care of newborns. Illness, Crisis, and Loss, 22(4), 311–332. https://doi.org/10.2190/IL.22.4.d

46.

McAdam

Puntillo

(2018). Pilot study assessing the impact of bereavement support on families of deceased intensive care patients. American Journal of Critical Care, 27(5), 372–380.

47.

Meleis

A. I.

(1975). Role insufficiency and role supplementation: A conceptual framework. Nursing Research, 24(4), 264–271.

48.

Meleis

A. I.

(Ed.). (2010). Transitions theory: Middle-range and situation-specific theories in nursing research and practice. Springer Publishing Company, LLC.

49.

Meleis

A. I.

(2015). Transitions theory. In Smith

M. C.

Parker

M. E.

(Eds.). Nursing theories and nursing practice, (4th ed.). F.A. Davis Company.

50.

Mikulincer

Florian

(1998). The relationship between adult attachment styles and emotional and cognitive reactions to stressful events. In Simpson

J.A

Rhodes

W.S

(Eds.), Attachment Theory and Close Relationships (pp. 143–165). The Guilford Press.

51.

Moore

Magee

Gamreklidze

Kowalewski

(2019). Social media mourning: Using grounded theory to explore how people grieve on social networking sites. OMEGA - Journal of Death and Dying, 79(3), 231–259. https://doi.org/10.1177/0030222817709691

52.

Neimeyer

R. A.

Wittkowski

Moser

R. P.

(2004). Psychological research on death attitudes: An overview and evaluation. Death Studies, 28(4), 309–340. https://doi.org/10.1080/07481180490432324

53.

Neville

T. H.

Clarke

Takaoka

Sadik

Vanstone

Phung

Hjelmhaug

Hainje

Smith

O. M.

LeBlanc

Hoad

Tam

Reeve

Cook

D. J.

(2020). Keepsakes at end of life. Journal of Pain and Symptom Management, 60(5), 941–947. https://doi.org/10.1016/j.jpainsymman.2020.06.011

54.

Oliveira

Parikh

Lopez-Ruiz

Carrilo

Goldberg

Cearras

(2021) ICU outcomes and survival in patients with severe COVID-19 in the largest health care system in central Florida. Plos One 16(3), Article e0249038. https://doi.org/10.1371/journal.pone.0249038

55.

Reynolds

P. D.

(1971). A primer in theory construction. Bobbs-Merrill.

56.

Riegel

Randall

Buckley

(2019). Memory making in end-of-life in the adult intensive care unit: A scoping review of the research literature. Australian Critical Care, 32(5), 442-447.

57.

Robinson

Gott

Ingleton

(2014). Patient and family experiences of palliative care in hospital: What do we know? An integrative review. Palliative Medicine, 28(1), 18–33. https://doi.org/10.1177/0269216313487568

58.

Rogers

A. T.

Braband

Gaudino

(2019). Implementing the pedagogy of suffering: A photovoice innovation in students’ exploration of grief and loss. Journal of Social Work, 55(4), 684–694. https://doi.org/10.1080/10437797.2019.1633974

59.

Sathitratanacheewin

Engelberg

R. A.

Downey

Lee

R. Y.

Fausto

J. A.

Straks

Dunlap

Sibley

Lober

Loggers

E. T.

Khandelwal

Curtis

J. R.

(2018). Temporal trends between 2010 and 2015 in intensity of care at end-of-life for patients with chronic illness: Influence of age under vs. Over 65 years. Journal of Pain and Symptom Management, 55(1), 75–81. https://doi.org/10.1016/j.jpainsymman.2017.08.032

60.

Savory

E. A.

Marco

C. A.

(2009). End-of-life issues in the acute and critically ill patient. Scandinavian Journal of Trauma, Resuscitation and Emergency Medicine, 17(21). https://doi.org/10.1186/1757-7241-17-21.

61.

Shamoo

Resnik

(2015). Responsible Conduct of Research (3rd ed.). Oxford University Press.

62.

Sim

Machin

Bartlam

(2014). Identifying vulnerability in grief: Psychometric properties of the adult attitude to grief scale. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 23(4), 1211–1220. https://doi.org/10.1007/s11136-013-0551-1

63.

Society for Critical Care Medicine . (2023). Critical care statistics. https://www.sccm.org/Communications/Critical-Care-Statistics

64.

Soothill

Morris

S. M.

Thomas

Harman

J. C.

Francis

Millbury . (2003). The universal, situational, and personal needs of cancer patients and their main carers. European Journal of Oncology Nursing, 7(1), 5–13. https://doi.org/10.1054/ejon.2002.0226

65.

Suurmond

Lanting

de Voogd

Oueslati

Boland

van den Muijsenbergh

(2021). Twelve tips to teach culturally sensitive palliative care. Medical Teacher, 43(7), 845–850. https://doi.org/10.1080/0142159X.2020.1832650

66.

Sykes

(2008). End of life issues. European Journal of Cancer, 44(8), 1157–1162. https://doi.org/10.1016/j.ejca.2008.02.035

67.

Tang

S. T.

Huang

Chou

Chuang

Chiang

M. C.

(2021). End-of-Life care quality in ICUs is associated with family surrogates’ severe anxiety and depressive symptoms during their first 6 Months of bereavement. Critical Care Medicine, 49(1), 27–37. https://doi.org/10.1097/CCM.0000000000004703

68.

Tishelman

Lindqvist

Hajdarevic

Rasmussen

B. H.

Goliath

(2016). Beyond the visual and verbal: Using participant-produced photographs in research on the surroundings for are at the end-of-life. Social Science & Medicine, 68, 120–129. https://doi.org/10.1016/j.socscimed.2016.09.012.

69.

Truong

R. D.

Campbell

M. L.

Curtis

J. R.

Haas

C. E.

Luce

J. M.

Rubenfeld

G. D.

Rushton

C. H.

Kaufman

D. C.

(2008). Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American College of critical care medicine. Critical Care Medicine, 36(3), 953–963. https://doi.org/10.1097/CCM.0B013E3181659096

70.

University of California San Francisco, Philip R. Lee Institute for Health Policy Studies . (2022). ICU outcomes: Summary of NQF-endorsed intensive care outcomes models for risk adjusted Mortality and Length of stay (ICOM_mort and ICOM_LOS). https://healthpolicy.ucsf.edu/icu-outcomes

71.

van Manen

(1990) Researching lived experience: Human science for an action sensitive pedagogy. State University of New York Press.

72.

Walker

L. O.

Avant

K. C.

(2019). Strategies for theory construction in nursing (6th ed.). Pearson Education.

73.

Wang

Burris

M. A.

(1997). Photovoice: Concept, methodology, and use for participatory needs assessment. Health Education and Behavior, 24(3), 369–387. https://doi.org/10.1177/109019819702400309

74.

Yang

(2012). An autophotography of the young adult children of bereaved families in Korea. Journal of Loss & Trauma, 17(1), 1–11. https://doi.org/10.1080/15325024.2011.575710

75.

Zhang

Wright

A. A.

Huskamp

H. A.

Nilsson

M. E.

Maciejewski

M. L.

Earle

C. C.

Block

S. D.

Maciejewski

P. K.

Prigerson

H. G.

(2009). Health care costs in the last week of life: Associations with end-of-life conversations. Archives of Internal Medicine, 169(5), 480–488. https://doi.org/10.1001/archinternmed.2008.587

76.

Zimmerman

J. E.

Kramer

A. A.

Knaus

W. A.

(2013). Changes in hospital mortality for United States intensive care unit admissions from 1988 to 2012. Critical Care, 17(2), R81. https://doi.org/10.1186/cc12695

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