Physicians Perceptions of Shared Decision-Making in Neonatal and Pediatric Critical Care

Abstract

Background:

Most children die in neonatal and pediatric intensive care units after decisions are made to withhold or withdraw life-sustaining treatments. These decisions can be challenging when there are different views about the child’s best interest and when there is a lack of clarity about how best to also consider the interests of the family.

Objective:

To understand how neonatal and pediatric critical care physicians balance and integrate the interests of the child and family in decisions about life-sustaining treatments.

Methods:

Semistructured interviews were conducted with 22 physicians from neonatal, pediatric, and cardiothoracic intensive care units in a single quaternary care pediatric hospital. Transcribed interviews were analyzed using content and thematic analysis.

Results:

We identified 3 main themes: (1) beliefs about child and family interests; (2) disagreement about the child’s best interest; and (3) decision-making strategies, including limiting options, being directive, staying neutral, and allowing parents to come to their own conclusions. Physicians described challenges to implementing shared decision-making including unequal power and authority, clinical uncertainty, and complexity of balancing child and family interests. They acknowledged determining the level of engagement in shared decision-making with parents (vs routine engagement) based on their perceptions of the best interests of the child and parent.

Conclusions:

Due to power imbalances, families’ values and preferences may not be integrated in decisions or families may be excluded from discussions about goals of care. We suggest that a systematic approach to identify parental preferences and needs for decisional roles and information may reduce variability in parental involvement.

Keywords

ICU/critical care issues in palliative care pediatric palliative care pediatric communication issues physician–patient communication shared decision-making pediatric bioethics family-centered care

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References

Burns

Casey

Lyle

Bird

Fussell

Robbins

. Increasing prevalence of medically complex children in US hospitals. Pediatrics. 2010;126(4):638–646.

Davidson

Jones

Bienvenu

. Family response to critical illness: postintensive care syndrome-family. Crit Care Med. 2012;40(2):618–624.

Anderson

Arnold

Angus

Bryce

. Posttraumatic stress and complicated grief in family members of patients in the intensive care unit. J Gen Intern Med. 2008;23(11):1871–1876.

Colville

Darkins

Hesketh

Bennett

Alcock

Noyes

. The impact on parents of a child’s admission to intensive care: integration of qualitative findings from a cross-sectional study. Intensive Crit Care Nurs. 2009;25(2):72–79.

Cameron

Chu

Matte

. One-year outcomes in caregivers of critically ill patients. N Engl J Med. 2016;374(19):1831–1841.

McAdam

Puntillo

. Symptoms experienced by family members of patients in intensive care units. Am J Crit Care. 2009;18(3):200–209.

Fassier

Azoulay

. Conflicts and communication gaps in the intensive care unit. Curr Opin Crit Care. 2010;16(6):654–665.

Azoulay

Pochard

Kentish-Barnes

. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med. 2005;171(9):987–994.

Gries

Engelberg

Kross

. Predictors of symptoms of posttraumatic stress and depression in family members after patient death in the ICU. Chest. 2010;137(2):280–287.

10.

Hickman

Jr Douglas

. Impact of chronic critical illness on the psychological outcomes of family members. AACN Adv Crit Care. 2010;21(1):80–91.

11.

Davidson

Aslakson

Long

. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med. 2017;45(1):103–128.

12.

Richards

Starks

O’Connor

Doorenbos

. Elements of family-centered care in the pediatric intensive care unit: an integrative review. J Hosp Palliat Nurs. 2017;19(3):238–246.

13.

Society of Pediatric Nurses Child Advocacy Committee. Pediatric bill of rights. 2016; 1-5. Available at: http://www.pedsnurses.org/d/do/477. Accessed September 22, 2017.

14.

American Academy of Pediatrics Committee on Hospital Care. Family-centered care and the pediatrician’s role. Pediatrics. 2003;112(3 pt 1):691–697.

15.

National Hospice and Palliative Care Organization. Patient and family-centered care. n.d.; https://www.nhpco.org/quality/patient-and-family-centered-care. Accessed April 13, 2017.

16.

Meert

Clark

Eggly

. Family-centered care in the pediatric intensive care unit. Pediatr Clin North Am. 2013;60(3):761–772.

17.

Larcher

Craig

Bhogal

Wilkinson

Brierley

. Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice. Arch Dis Child. 2015;100(suppl 2):s3–s23.

18.

Truog

Meyer

Burns

. Toward interventions to improve end-of-life care in the pediatric intensive care unit. Crit Care Med. 2006;34(11):S373–S379.

19.

de Vos

Seeber

Gevers

Bos

Gevers

Willems

. Parents who wish no further treatment for their child. J Med Ethics. 2015;41(2):195–200.

20.

Gillam

Sullivan

. Ethics at the end of life: Who should make decisions about treatment limitation for young children with life-threatening or life-limiting conditions? J Paediatr Child Health. 2011;47(9):594–598.

21.

Van Cleave

Roosen-Runge

Miller

Milner

Karkazis

Magnus

. Quality of communication in interpreted versus noninterpreted PICU family meetings. Crit Care Med. 2014;42(6):1507–1517.

22.

de Vos

Bos

Plotz

. Talking with parents about end-of-life decisions for their children. Pediatrics. 2015;135(2):e465–e476.

23.

DeLemos

Chen

Romer

. Building trust through communication in the intensive care unit: HICCC. Pediatr Crit Care Med. 2010;11(3):378–384.

24.

Caeymaex

Speranza

Vasilescu

. Living with a crucial decision: a qualitative study of parental narratives three years after the loss of their newborn in the NICU. PLoS One. 2011;6(12):e28633.

25.

Michelson

Patel

Haber-Barker

Emanuel

Frader

. End-of-life care decisions in the PICU: roles professionals play. Pediatr Crit Care Med. 2013;14(1):e34–e44.

26.

Bartel

Engler

Natale

Misra

Lewin

Joseph

. Working with families of suddenly and critically ill children: physician experiences. Arch Pediatr Adolesc Med. 2000;154(11):1127–1133.

27.

Birchley

. Deciding together? Best interests and shared decision-making in paediatric intensive care. Health Care Anal. 2014;22(3):203–222.

28.

Placencia

McCullough

. The history of ethical decision making in neonatal intensive care. J Intensive Care Med. 2011;26(6):368–384.

29.

Rhodes

Holzman

. Is the best interest standard good for pediatrics? Pediatrics. 2014;134(suppl 2):S121–S129.

30.

Carnevale

Canoui

Cremer

. Parental involvement in treatment decisions regarding their critically ill child: a comparative study of France and Quebec. Pediatr Crit Care Med. 2007;8(4):337–342.

31.

Cohen

Crabtree

. Qualitative research guidelines project. 2006; http://www.qualres.org/HomeSemi-3629.html. Accessed August 29, 2017.

32.

Dedoose. Version 7.5.9, web application for managing, analyzing, and presenting qualitative and mixed method research data (2016). Los Angeles, CA: SocioCultural Research Consultants, LLC, http://www.dedoose.com/.

33.

Hsieh

Shannon

. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–1288.

34.

Attride-Stirling

Thematic networks: an analytic tool for qualitative research. Qual Res. 2001;1(3):385–405.

35.

Saldana

The Coding Manual for Qualitative Researchers. Third Edition. London, UK: Sage Publications; 2016.

36.

Lincoln

Guba

. Naturalistic Inquiry. Newbury Park, CA: Sage Publications; 1985.

37.

Creswell

. Research Design: Qualitative, Quantitative, and Mixed Methods Approaches. 4th ed. Los Angeles, CA: Sage; 2014.

38.

Curtis

White

. Practical guidance for evidence-based ICU family conferences. Chest. 2008;134(4):835–843.

39.

Orfali

. Parental role in medical decision-making: fact or fiction? a comparative study of ethical dilemmas in French and American neonatal intensive care units. Soc Sci Med. 2004;58(10):2009–2022.

40.

Kaufman

. And a Time to Die: How American Hospitals Shape the End of Life. New York, NY: A Lisa Drew Book/Scribner; 2005.

41.

Agbeko

Burns

Peters

. Tools for revealing uncomfortable truths? measuring child-centred health-related quality of life after paediatric intensive care. Intensive Care Med. 2015;41(7):1330–1332.

42.

O’Brien

Nadel

Almossawi

Inwald

. The impact of chronic health conditions on length of stay and mortality in a general PICU. Pediatr Crit Care Med. 2017;18(1):1–7.

43.

Simon

Berry

Feudtner

. Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics. 2010;126(4):647–655.

44.

Dupont-Thibodeau

Barrington

Farlow

Janvier

. End-of-life decisions for extremely low-gestational-age infants: why simple rules for complicated decisions should be avoided. Semin Perinatol. 2014;38(1):31–37.

45.

Janvier

Barrington

Farlow

. Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology. Semin Perinatol. 2014;38(1):38–46.

46.

White

. Medical futility and potentially inappropriate treatment. In: Youngner

Arnold

, eds. The Oxford Handbook of Ethics at the End of Life. New York, NY: Oxford University Press; 2016.

47.

Fried

. Shared decision making—finding the sweet spot. N Engl J Med. 2016;374(2):104–106.

48.

Kon

AA.

Answering the question: “Doctor, if this were your child, what would you do?”. Pediatrics. 2006;118(1):393–397.

49.

Groll

. Four models of family interests. Pediatrics. 2014;134(suppl 2):S81–S86.

50.

Weissman

Meier

. Identifying patients in need of a palliative care assessment in the hospital setting: a consensus report from the Center to Advance Palliative Care. J Palliat Med. 2011;14(1):17–23.

51.

Feudtner

. Collaborative communication in pediatric palliative care: a foundation for problem-solving and decision-making. Pediatr Clin North Am. 2007;54(5):583–607, ix.