Doulas: Implications for Birth and

Bereavement

Kory McGrathMother, Funeral Director, Doula & Student Midwife

“Death is the antithesis of life –and at its core, the experience of losing a baby

is the opposite outcome of pregnancy that a parent or a caregiver would anticipate.”

©Todd H

ochberg

What’s in a name? A note on the language of death in birth and the rebirth of death care:

• Death and ‘loss’

• Miscarriage and stillbirth

• Doula and midwife

• Thanadoula and death midwife

What do doulas do?• Support informed choice and a woman’s birth plan

• Provide labour support

• Facilitate opportunities for parenting the baby

• Meaning-making

• Provide continuity of care into the post-partum

• Provides respite for family caregivers

• Positively impacts perceptions of the birth experience

The difference between a philosophy and an institution• Hospice vs. hospital

• Home funeral vs. funeral home

“First, do nothing.”

-Alexa Hagerty

Doulas may assist in providing agency to the baby, to animate the birth room against the medicalization, the pathology of the outcome of stillbirth.

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Key Concepts from Literature Review

The need for culturally sensitive and appropriate care

Silence that surrounds pregnancy loss

Care for caregiver

Emergence of collaborative strategies

Establishment of hospital policies & bereavement protocols/committees

Key Concepts from Experiential Learning

Importance of continuity of care

Encouragement of holding the baby, Disclosure of status of baby, hospital policies on autopsy and disposition

Recognition that support people have special needs

Mentoring among and education for caregivers

Connecting to perinatal bereavement organizations

Analysis and Reflections on Key Issues in Perinatal Death Care

Reclaiming Birth, Reclaiming Death: Perinatal Death as a Woman’s Issue

The Cultural Dichotomy: Finding Symmetry in Sensitive Bereavement Care

Losing Babies, Making Mothers: Validation of Personhood and Parenthood in Perinatal Death

“It is not just the making of babies, but the making of mothers

[that is] the miracle of birth”

-Barbara Katz Rothman

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What do our own fears, anxieties, cultural beliefs and preconceived ideas about death look like?

How do these ideas impose on how we provide care for bereaved families?

How do we become effective caregivers to bereaved families?

What Not to Say

You can have other children

You have an angel in Heaven

This happened for the best

At least it happened early, before you knew the baby

There was something wrong with the baby anyway

Calling the baby “it” or “fetus”

What to Say

I am so sorry that this has happened

I just do not know what to say

Is there anything I can do?

Tell me what happened

What is your baby’s name?

Will you have a funeral or a naming/blessing ceremony?

How do you want your baby to be remembered?

“The very nature of perinatal grief makes it hard to interview individually,

and yet it is the lived experience that opens the window into the veracity of the subject.”

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Implications for Birth and Bereavement

Challenges our understanding of ‘normality’

Continuity of care becomes central

‘Upstream thinking’

Supporting and advocating for informed choice

Concluding Thoughts

Theory vs. Experiential Learning

Prepared vs. Reactionary

Be the change that you want to see

“watch what unfolds, rather than directing the grief reaction”

Recommendations

1. Develop strong relationships with L&D

2. Start a bereavement protocol/program

3. Goodwill as opposed to business

4. Informed choice includes funeral options

5. Always be a student

6. Continuity of care

“Know what to do without being asked,

listen even when nothing is being said,

and ‘be with’ the tangible without neglecting

what can not be seen or immediately felt.”

©Todd Hochberg

Virtual/Community Resources

Bereaved Families of Ontariobereavedfamilies.net

Pregnancy and Infant Loss Network (PAIL) pailnetwork.ca

StillLife Canadastill-lifecanada.ca

RTS Bereavement Training

Certificate workshop for healthcare professionals involved with perinatal death

Active learning experience

Provided insight, knowledge and hands-on practical experience

Skills necessary to interact with families experiencing perinatal death at all gestations

Canadian-centric publications:

DeMontigny F, Verdun C, McGrath K. “Cultural Representations of Pregnancy, Birth and Parenthood” in The World of Bereavement: Cultural Perspectives on Death in Families. Cacciatore, Joanne; DeFrain, John (Eds.) Springer. NY USA. April 2015.

McGrath K & Farrales L. “Making Meaning of Stillbirth” in Natal Signs: Cultural Representations of Pregnancy, Birth and Parenthood. Burton, Nadya (Ed.) Demeter Press. June 2015

ResourcesGold KJ. Navigating care after a baby dies: a systemic review of parent experiences with health providers. J Perinatol April 2007; 27 (4):230-7.

Gardner JM. Perinatal death: Uncovering the needs of midwives and nurses and exploring helpful interventions in the United States, England, and Japan. J of Transcultural Nursing 1999;10(2):120-130.

MacIntyre N. Breaking the silence. The Hamilton Spectator 2011 Sept 24. Available from: http://www.thespec.com/feature/article/598891--breaking-the-silence

Perinatal Bereavement Services of Ontario (PBSO), www.pbso.ca

Lewis CS. A grief observed. New York USA: Harper Collins; 2001.

Hebert MP. Perinatal bereavement in its cultural context. Death Studies 1998; 22(1):61-78.

Holloway M. Negotiating death in contemporary health and social care. Bristol UK: The Policy Press; 2007.

Daley M, Limbo R editors. RTS Bereavement Training: in early pregnancy loss, stillbirth & newborn death part I & part II. 7th ed. Gunderson Lutheran Medical Foundation Inc. USA: 2008.

Resolve Through Sharing (RTS) training [pamphlet] Toronto: PBSO; 2011.

Gunderson Lutheran Resolve Through Sharing (RTS) [Internet] 2011 Available from http://bereavementservices.org/education/resolve_through_sharing_bereavement_training

DiMarco M, Renker P, Medas J, Bertosa H, Gorantitis J. Effects of an educational bereavement program on health care professionals’ perceptions of perinatal loss. J of Cont Ed 2002;33(4):180-186.

Layne L. Pregnancy and infant loss support: a new, feminist, American, patient movement? Soc Sci and Med 2006 Sept;62)3):602-613.

Caelli K, Downie J, Letendre A. Parents’ experiences of midwife-managed care following the loss of a baby in a previous pregnancy. J Adv Nursing 2002 Jul;39(2):127-36.

Resources

Kavanaugh K, Hershberger P. Perinatal loss in low-income African-American parents: The lived experience. J Obstet Gynecol Neonatal Nurs. 2005 Sep-Oct;34(5):595-605.

Lundqvist A, Nilstun T, Dykes A. Both empowered and powerless: mothers’ experiences of professional care when their newborn dies. Birth 2002;29(3):192-199.

McKenna L, Rolls C. Undergraduate midwifery students’ first experiences with stillbirth and neonatal death. Contemp Nurse 2011Apr;38(1-2):76-83.

Layne L, Bailey H. Motherhood lost: conversations. [Television series]. Fairfax, VA: George Mason University Television; 2005-2009. Available from http://www.gmutv.gmu.edu/shows/motherhood_lost.asp

Drake T. The God of all comfort: experiences from a biblically-based perinatal loss support group. [PhD Dissertation]. Iowa USA: Iowa State University; 2010.

Hey V, Itzin C, Saunders L, Speakman MA. Hidden loss: miscarriage & ectopic pregnancy, 2nd ed. London UK: The Women’s Press ltd;1996.

Abraham C. Burying the unborn. The Globe and Mail (weekend edition) 2007 May 26; F:1,4.

Klass D, Gross R. Spiritual bonds to the dead in cross-cultural and historical perspective: comparative religion and modern grief. Death Studies 1999;23(6):547-67.

Katz Rothman B. Spoiling the pregnancy: prenatal diagnosis in the Netherlands. Birth by design: pregnancy, maternity care andmidwifery in North America and Europe. Raymond Devries et al, Eds. New York USA: Routledge; 2001:180-198.

Chan MF, Lou F, Zang Y, Chung YF, Wu LH, Cao F, et al. Attitudes of midwives towards perinatal bereavement in Hong Kong. Midwifery 2007;23(3):309-321.

Warland J, O’Leary J, McCutcheon H. Born after infant loss: the experiences of subsequent children. Midwifery. 2011 Oct;27(5):628-33.

Smart LS. Old losses: a retrospective study and infant death 1926-1955. J of Women and Aging 2008;15(1):71-91.

Resources

Now I Lay Me Down To Sleep [Internet]. Centennial, CO. [Cited Nov 4]. Available from http://www.nowilaymedowntosleep.org/about_us/

Hochberg T. Moments held: photographing perinatal loss. The Lancet 2011 April;377(9774)1310-1311.

Sychowski SMP. Life and death: in the all at once. Mother and Baby J 1998;3(1):33-39.

Pector E. How bereaved multiple-birth parents cope with hospitalizaiton, homecoming, disposition for deceased, and attachment tosurvivors. J of Perinataology 2004 July;24:714-722.

Hutti M. Social and professional support needs of families after perinatal loss J Obstet Gynecol Neonatal Nurs. 2005 Sep-Oct;34(5):630-8.

Lemmer CM. Parental perceptions of caring following perinatal bereavement. Western Journal of Nursing Research 1991;13(4):475-493.

Bartell S. Perinatal Loss: Understanding the loss, supporting the grieving International Journal of Childbirth Education 2005 Sept; 20(3):18.

Guidelines for healthcare professionals supporting families experiencing a perinatal loss. Paediatr Child Health 2001 Sept;6(7). Available from: http://www.cps.ca/english/statements/FN/FN01-02.pdf

Simkin P. Just another day in a woman’s life? Part II: Nature and consistency of women’s long-term memories of their first birthexperiences. Birth 1992;19(2):64-81.

Nurses grieve too: insights into experiences with perinatal loss. Jonas-Simpson C.(Producer) 2010 Documentary. Toronto, Canada. CBC Newsworld; 2008.

Dimestore Productions in association with CBC Newsworld, McDonald S. Capturing a short life [Documentary Film]. Toronto, Canada:CBC Newsworld; 2008.

Kincaid A. Women’s experiences of pregnancy loss: addressing the cultural taboo. Student Projects Manuscript. Nov 14 2005. Available from: http://www.instituteofmidwifery.org/MSFinalProj.nsf/a9ee58d7a82……….