tuesday june 3, 2008 mark weir, marilyn evans, kevin w. coughlin o bstetrics- g ynaecology, o...

Tuesday June 3, 2008

Mark Weir, Marilyn Evans,Kevin W. Coughlin

Obstetrics-Gynaecology, Oncology, & Paediatrics Ethics Education and Research Unit Presentation

2

Background & Significance Research Aims/Objectives Data Analysis Preliminary Results Future Directions/Implications

OGOPEER Presentation, June 3 2008

3OGOPEER Presentation, June 3 2008

Anticipation and expectations building Changing perceptions of fetus

Little preparation for prematurity


Grey Zone between 23-25 weeks gestation.

GREY


6

Who do we resuscitate? Who don’t we resuscitate? Is there a limit to what we attempt? Should there be? Who gets to decide? Where does the final decision-making

power rest? How do we define viability? Is it possible we all define it

differently?OGOPEER Presentation, June 3 2008

Literature on…› Health-Care Providers’ Perspective› Parents’ Perspective› Client-Clinician Relationships› Combining Perspectives


What do you need to make a decision…?

› Generally› In Health-Care Situations› In Ethical Situations

(beginning and end of life)

› Values are more fundamental to a decision problem than are the alternatives (Keeney, 1992)


Self-governance› Informed Choice

In making a truly free and informed decision about something having a significant impact on their future, and the future of their new child, they must know what the future may hold (Nisker, Baylis, & McLeod, 2006).

Uncertainty complicates this situation (Lantos, 2008)


The experience may feel more routine (Mifflin, 2003).

Collaboration of large number of different disciplines – requires a great deal of communication and integration (McGuire & Fowlie, 2005).

Experience moral distress (Wocial, 2002).


Professional codes› autonomy, beneficence, non-maleficence,

justice› However, principles can be rigid, have no

hierarchy and not take into account the specifics of each individual situation (Mifflin, 2003).

Present situation for informed choice (Harrison et. al, 2003).


Little known about how parents rationalize decisions regarding resuscitation (Pinch & Spielman, 1990).

Each couple has its own context, life experiences, particularities

Family-Centred Practice?


Physicians’ power and authority in the delivery of health-care and the perception of parents’ roles as passive participants have been shown to impact on parents’ decisions regarding their infant’s care (Sherwin, 1998; Duff, 1987).

Significant morbidity in survivors places a burden on the patient, his/her family and society (Kraybill, 1998)


Changing/Evolving/Particular› Personal biases, role perceptions, value

judgements and other social influences play an important role in how decisions are made (Kenny, 1994; Sherwin, 1998).

Patient (Family)-Centred Care› Family context, subjective,

personal values› Each C-C relationship differs


16

How does a decision about the resuscitation of extremely premature infants get made that combines the perspectives of health-care providers and parents?

OGOPEER Presentation, June 3 2008

Phase 1› Exploring the current landscape across

Canada Phase 2

› Health-care Professionals› Parents

Phase 3› Public engagement› Policy development


› Most studies are quantitative surveys and chart reviews

› A lot of “expert” opinion in the literature, removed from clinical context

Is this information sufficient to critically explore the ethical decision-making of all key players at the limits of viability?


(i) to explore importance of various ethical issues for key informants (i.e. women, their partners, family members, physicians, nurses, allied health providers)

(ii) through the use of grounded theory, develop a theoretical framework that illuminates the ethical decision-making process in the resuscitation of extremely premature infants.


17 interviews with Health Care Providers (HCPs)

Obstetricians, Neonatologists, Maternal Fetal Medicine Specialists, Clinical Nurse Specialists, Advanced Practice Nurses, Admitting Nurses

7 focus groups with Supporting Health Care Providers (sHCPs)

Respiratory Therapists, Social Work, Antenatal Nurses, Developmental Follow-Up, Dieticians

(5 interviews with Women under 26 wks gestation)


Grounded Theory› Development of a theory, grounded in

participant experience (Strauss & Corbin, 1994).

› Used to generate explanatory models to understand the social processes and human behaviors (Morse & Field, 1995).

› Generate a visual conception of decision-making framework

Memoing, Field Notes, Reflexive Journal (Morse, 1994), (Janesick, 2003).

The End? - Theoretical Saturation (Strauss & Corbin, 1998).


Initial reading of transcript independently, identifying codes of importance

Reading of transcriptions together (triangulation) with Kevin, Marilyn, & Mark, identifying and comparing codes

Re-reading of previously analyzed transcripts to further sculpt codes.

Drowning in a sea of data?


Data Collection Data Analysis

First InterviewPreliminary Categories

Second InterviewRefined Categories

Third InterviewMore Refined Categories

Close to SaturatedCategories

Saturation

24

7 of 17 HCP interviews, 3 of 7 Focus Groups Analyzed OGOPEER Presentation, June 3 2008

Relational Decision-Making Process Guidance Hope Uncertainty Time


Information Giving/Sharing› Content

We like to think that parents are making an informed decision because we have given them the information. But in fact, I don’t believe that they’re always making an informed decision. Because you and I can’t imagine what it would be like to raise a disabled child. And we don’t have any way of telling people ahead of time how disabled their child would be.

› Process we don’t want to be paternalist and tell

them what to do, but at the same time, how we talk to them, I think, has a big influence.

OGOPEER Presentation, June 3 2008 27

Focus is on the parents› I try to get as much of

information as possible from the parents, what their wishes are, what their expectations are, because its their child, is not my child and they are the ones going to look after that child for the rest of their lives.

The guide has idea of what to expect down the road

Being hopeful but realistic› You always want to leave

people with a little shred of, of hope. But, it can’t be false hope.


Little long term knowledge I don’t think this is a unit where

you can say, we will always do this in this situation. You can’t. ‘Cause every situation is different.

Fear of abandonment they can ask us as many

questions as they like because we’re accessible by pager, we’re available to go over and speak with them.


Very prominent, found in parents/HCPs

The patients are desperate. For hope. They need something to hang onto.

Support A lot of them are teary and they might not

say a whole lot, but you’re there more for emotional support.

But what to do with exceptional cases?


A shift in medical decision making, from paternalistic to fully autonomous, can be counter productive in the complex situation of resuscitation.

The idea of ‘guidance’ through the decision making process is a theme that we continue to explore.


We remain open to the ongoing, dynamic process of data collection and analysis.


Constant Continual Analysis Ongoing› Re-interviewing

Parents’ Perspective

Long term projections…› to develop an ethical decision-making framework

that can be used clinically to understand the process and decrease moral distress.

› serve as a foundation for future studies, educational programs, guidelines, and policy development concerning resuscitation practices.


Emotional Issues◦ An open-ended line of questioning allowing

participants to share as much information as they feel comfortable with (Smythe & Murray, 2000).

◦ While the nature of unstructured interviews can create a potential psychological risk to participants, it can be a therapeutic and helpful opportunity for participants to share their story (Corbin & Morse, 2003).

Gender Issues◦ “It isn’t so much about gender, as it is about

values”- Judy Chicago, feminist artist


STIRRHSCIHR

Kevin and Marilyn Administrative Staff at SJHC


Becker, P. T. & Grunwald, P. C. (2000). Contextual dynamics of ethical decision making in the NICU. Journal of Perinatology and Neonatal Nursing, 14(2), 58-72.

Corbin, J., & Morse, J. M. (2003). The unstructured interactive interview: Issues of reciprocity and risks when dealing with sensitive topics. Qualitative Inquiry, 9, 335.

Duff, R. (1987). Close-up versus distant ethics: deciding the care of infants with poor diagnosis. Seminars in Perinatology, 11(2), 244-53. Hemminki, E., Santalahti, P., & Louhiala, P. (1997). Ethical conflicts in regulating the start of life. Perspectives in biology and medicine, 40(4),

586. Janesick, V. J. (2003). Chapter 2 – The choreography of qualitative research design. In N.K. Denzin & Y.S. Lincoln (Eds.), Strategies of qualitative

inquiry (pp.46-79). Thousand Oaks, CA: Sage Publications. Kenny, N. P. (1994). The ethics of care and the patient-physician relationship. Annals of the Royal College of Physicians and Surgeons of

Canada, 27(6),356-8. Kraybill, E. N. (1998). Ethical issues in the care of extremely low birth weight infants. Seminars in Perinatology, 22(3), 207-215. McGuire, W., & Fowlie, P. W. (2005). ABC of preterm birth. Malden, MA.: BMJ Books/Blackwell Pub. Mifflin, P. C. (2003). Saving very premature babies: Key ethical issues. London: Elsevier Science, Ltd. Morse, J. (1994). Emerging from the data: Cognitive processes of analysis in qualitative research. In J. Morse (Ed.), Critical issues in qualitative

research methods (p. 23-41). Thousand Oaks, CA: Sage Publications. Morse, J., Field, P. (1995). Qualitative research methods for health professional. (2nd ed.). Thousand Oaks, CA: Sage Publications. Nisker, J. A., Baylis, F., & McLeod, C. (2006). Choice in fertility preservation in girls and adolescent women with cancer. Cancer, 107, 1686-1689. Pinch, W.J. & Spielman, M.L. (1990). The parent’s perspective: ethical decision-making in neonatal intensive care. Journal of Advanced Nursing

15, 712-19. Sherwin, S. (1998). A relational approach to autonomy in health-care. In: Sherwin S, coordinator. The politics of women’s health: exploring

agency and autonomy. Philadelphia, PA: Temple University Press. Smythe, W. E. & Murray, M. J. (2000). Owning the story: Ethical considerations in narrative research. Ethics and Behaviour, 10(4), 311-336. Strauss, A. L., Corbin, J. M. (1990). Grounded theory research: Procedures, canons, and evaluative criteria. Qualitative Sociology, 13(1), 3-21. Strauss, A. L., Corbin, J. M. (1994). Grounded theory methodology: an overview. In: N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative

research. Thousand Oaks, CA: Sage Publications. Strauss, A. L., Corbin, J. M. (1998) Basics of qualitative research: Techniques and procedures of developing a grounded theory. (2nd ed.)

Thousand Oaks, CA: Sage Publications.


tuesday june 3, 2008 mark weir, marilyn evans, kevin w. coughlin o bstetrics- g ynaecology, o...

Documents

parents decisions

informed decision

present situation

infants care sherwin

situation lantos

individual situation

decision problem

significant impact