SGM Companioning Method

The Importance of Compassionate Care
Written by Kelly Gerken
From the SGM Companioning Method Training Manual © 2016 (Updated 2024) All rights reserved.

The Role of the Support Team

Medical professionals and other members of the support team have the unique position of bearing the hardest news a parent will ever hear. Shocked parents look to hospital staff and support persons to guide them through this process, as a source of information, and maybe even as a place for encouragement and comfort. In such a tender time, positive, affirming, gentle, and non-judgmental attitudes and words are needed. Your response can have a negative or positive impact on the experience of the bereaved family.

Evidence-Based Findings

“How healthcare professionals interacted with the baby immediately after birth was very important and often had a lasting influence on parents. Parents were upset when their baby was treated disrespectfully, such as when the baby was placed in a bucket or laid out on a metal table. Parents appreciated when babies were treated with care and tenderness. (“Even though she wasn’t breathing and she didn’t open her eyes, she [the midwife] still said you’ve got a beautiful baby girl. It just meant the world.”) [38, p.5], and referred to by name.” (Lisy et al., 2016, p. 6)

Page 15 from the same article spoke of findings on the effect of decisions parents made regarding induction in the case of a life-limiting perinatal diagnosis and post birth decisions about whether to see or hold the baby. Many factors were dependent on the sensitivity and compassion displayed by medical professionals and caregivers as well as the type and amount of preparation parents experienced. The collaboration of the birth support or palliative care team with parents was also mentioned as having an impact on the family’s experience.

A few findings:

Seeing the stillborn baby is validation and evidence of their baby’s birth, existence, and death. Not seeing may cause regret for some people.
Memorabilia is valuable: tangible evidence is helpful and received with gratitude.
Hospital systems and protocols built around seeing, recognizing, holding, and saying goodbye to the stillborn baby can have a positive and negative effect.
Respect for the baby by health care professionals.
Sensitivity and compassion from health care professionals to support meeting and parting from their baby.
Guiding or taking the lead in supporting parents to see their stillborn baby.
Structured, well-timed information from health care professionals helps parents to make decisions about seeing and spending time with their baby. (Lisy et al., 2016, p.15)

“About seeing and holding the stillborn baby, this review suggests that when parents were reticent or fearful about seeing their baby, in retrospect they often appreciated instances where health care professionals encouraged and guided them in making the decision to see their baby” (Lisy et al., 2016, p. 16).

None of the parents in the study regretted seeing their baby, even if they were previously apprehensive. Many who did not see or hold their babies experienced regret. In working with both families and medical professionals over the last 20 years, we have learned that there was very little training in most education programs for nurses and providers. They were thrown into giving a life-limiting diagnosis for a patient or walking with a family through the delivery of a miscarried or stillborn baby with very little training and preparation. While we do not have an evidence-based study to cite regarding the lack of education, my interaction with more than 1,500 medical professionals who have taken the SGM Perinatal & Neonatal Loss Support Training has led to strong anecdotal evidence that backs up the claim that little education is offered to medical professionals on this subject. Our program has been the first of its kind implemented at many of our partnering hospitals. We have also expanded our training to multiple universities in NW Ohio, and our program is the first education they have received on the subject of supporting parents through perinatal and neonatal loss. This seems to be universal as we receive testimonies from hospitals, providers, nurses, patients, and other institutions throughout the United States.

“Many parents reported conflicting emotions upon later re-evaluating the decisions they made when their baby was born. These included seeing and spending time with their stillborn baby, memory-making rituals, and whether or not to have a post mortem evaluation or autopsy. The majority of parents expressed regrets about their decision not to hold or spend time with their stillborn baby. Many parents voiced a clear sense of frustration and injustice at having their decisions influenced by professionals as they were scared or unsure what they were ‘allowed to do,’ which later led to regret” (Burden et al, 2016, p. 8-9).

Impact of Creating a Lasting and Tangible Memory

Both parents who have experienced the loss of a baby and those who provide support for them have long recognized the importance of creating a lasting and tangible memory of the time they are given with their little one. We know that one of the biggest regrets experienced by parents facing perinatal loss is the failure to take pictures, especially professional quality images. Another regret is for parents who did not chose to hold and spend time with their baby, exploring every inch. Having something tangible…memorabilia, photographs, footprints, handprints, a lock of hair…all help to validate baby’s existence.

“I would have loved to have had professional photos taken of my son. I did not know anything when it came to losing a child to death. It would have been a blessing if the medical staff could have given me an array of options, instead of taking care of everything on their own.” ~ Jennifer Ross, Mother to Isaiah (Walking With You Booklet, Sufficient Grace Ministries 2013, p. 15)

As we’ve shared for years in our birth professional trainings, “There is no one more equipped to parent a baby, whether alive or not, than his or her parents.” ~ Kelly Gerken

Evidence-Based Findings

“Specific actions taken with the baby, such as bathing and dressing the baby, were also remembered as important. Some parents regretted specific actions that they had not taken, such as not “exploring” the baby (39), and some parents felt the amount of time spent with baby was never enough (29).

Collecting memorabilia was very important. Memorabilia ranged from photographs, locks of hair, and foot and handprints, to hospital wrist bands and “cot cards.” Parents did not always think of collecting these items themselves and appreciated when health care staff made suggestions” (Lisy et al., 2016, p.16).

Often when we are working on a birth plan with a family or offering suggestions as a support companion (doula) when parents are facing a perinatal loss they will say, “I did not even think of that.” Most parents are unsure what options are available to them. Offering options for parents and giving them time to contemplate and process their wishes helps to alleviate regrets, giving back a sense of control and peace over a few decisions that they can still make.

“To have the opportunity to say goodbye, to see their baby, make memories or have a postmortem evaluation brought about a sense of finality that for many parents was perceived as contributing to the healing process. Some studies have demonstrated these opportunities decreased anxiety, reduced physical symptoms and sleep disorders and allowed parents to cope better with their grief. [18-20]”

Offering Options

Several years ago, I testified before a state legislature on the importance of offering families all their options when they receive a life-limiting diagnosis in pregnancy, including the option of perinatal hospice support. According to perinatalhospice.org, only about 20% of parents who are given a life-limiting diagnosis in pregnancy will choose to continue. However, that number goes up to about 85%, in some studies, when families are simply offered the option of continuing with the support of perinatal hospice. This statistic tells us families want to know the option exists. There is too much potential for regret, which compounds a parent’s grief, when we do not give a family ALL the options available to them. A family’s choices should be respected, informed, and should NOT be made for them due to lack of information.

If we really care about choices for women, we would want them to have all of the information before making that life-impacting choice. She should have all of the medically accurate information available to her. Years ago, there was little evidence-based information to indicate the effects of perinatal hospice on a mother’s experience grieving her baby’s brief life. However, today there are an increasing number of evidence-based medical studies that indicate the benefits of parents having time to create memories with their babies, time to parent the way they choose. These studies finally back up what those of us who have worked with bereaved parents for more than a decade have witnessed with our own eyes.

In 2016, the American College of Obstetricians and Gynecologists and the Society for Maternal-Fetal Medicine updated their prenatal testing practice guidelines to include a recommendation that post-diagnosis counseling for parents should include the option of perinatal palliative care. Multiple evidence-based medical studies support our own experience working with grieving families, which indicate parents who were offered all the options available to them experienced less grief-related physical, emotional, and mental illness. Offering options and resources allows parents to make informed decisions and restores some control over an otherwise overwhelming and devastating situation. This information transcends the political debate over the issue of choice. Offering parents all available options does not take away their right to choose the option best for them.

The American Academy of Nursing supports pediatric palliative care, as outlined in their new position statement:

Perinatal palliative care (PPC) is an interprofessional model of care for parents who choose to continue their pregnancies following diagnosis of a life-limiting prenatal condition, defined as conditions with “no reasonable hope of cure that will ultimately be fatal.” The Academy supports (a) development of effective models of PPC, (b) workforce development for all members of the PPC team, (c) increased awareness of PPC for the pregnant woman and family faced with a life-limiting fetal condition, and (d) endorsement of the role of the nurse as a key member of the PPC team. (Burden et al., 2016, p. 10).

“To have the opportunity to say goodbye, to see their baby, make memories, or have a postmortem evaluation brought about a sense of finality that for many parents was perceived as contributing to the healing process. Some studies have demonstrated these opportunities decreased anxiety, reduced physical symptoms and sleep disorders and allowed parents to cope better with their grief.” [18-20]” (Burden et al., 2016, p. 10).

“In 2018, Frank Infurna and colleagues looked at the general health and physical functioning of 461 parents who had lost children over the course of 13 years.” Experiencing mental health trauma leads to physical symptoms such as stomach pains, muscle aches, headaches, and irritable bowel syndrome. Some studies indicated unresolved grief can lead to immune disorders, cancer, and long-term genetic changes at the cellular level.

Parents’ adjustment following the death of their child: Resilience is multidimensional and differs across outcomes examined (nih.gov)

Opioid use disorder during pregnancy has been linked with serious negative health outcomes for pregnant women and developing babies, including preterm birth, stillbirth, maternal mortality, and neonatal abstinence syndrome (NAS). Substance Use During Pregnancy | CDC

Between 2000 and 2014, there was a 26 percent overall increase in maternal mortality across the United States, particularly due to a rise in substance misuse and subsequent overdose among pregnant and postpartum people.
Women with a history of recurrent substance use throughout their lifetime are more likely to develop postpartum mental health disorders compared to women who have not used substances throughout their lifetime.
SUD increases risk of stillbirth and infant mortality and congenital anomalies.
Babies who do not receive proper prenatal care are more likely to suffer from preventable diseases, prematurity, congenital anomalies, and even infant mortality.
Substance Use Disorder Hurts Moms & Babies (nationalpartnership.org)

In the US more than 20% of pregnancy and infant deaths are a result of drug use, suicide, or homicide. www.nichd.nih.gov

Supporting ALL parents

Socioeconomic Status

Working with hundreds of families who walk through a life-limiting prenatal diagnosis, it has been noticed that socioeconomic status is a great determinant in how mothers/parents are treated by medical staff and how willing parents are to reach out for care or support. This population experiences a higher number of perinatal and infant losses, due to lack of resources, education, and prenatal care. And, they are less likely to connect to or have access to mental health resources or bereavement support when facing a loss.

Mortality rate of black infants

Profound consequences of systemic racism in housing/ law/ education/ healthcare/ environmental justice etc. cause poor health outcomes for black, brown, and indigenous persons of color. Sadly, these outcomes persist even when those persons of color are wealthy, highly educated, and have access to care.

Non-Hispanic blacks/African Americans have 2.3 times the infant mortality rate as non-Hispanic whites.
Non-Hispanic black/African American infants are four times as likely to die from complications related to low birthweight as compared to non-Hispanic white infants.
Non-Hispanic black/African American infants had twice the sudden infant death syndrome mortality rate as non-Hispanic whites, in 2018.
In 2018, Non-Hispanic black/African American mothers were twice as likely to receive late or no prenatal care as compared to non-Hispanic white mothers.
Statistic source: Infant Mortality and African Americans – The Office of Minority Health (hhs.gov)

SGM will continue to work tirelessly with patients who experience barriers to compassionate care, based on their ethnicity, race, gender identify, religion, and socioeconomic status, to bridge the gap in services they currently receive.

References

Lisy, K., Peters, M. J., Riitano, D., Jordan, Z., & Aromataris, E. (2016). Provision of Meaningful Care at Diagnosis, Birth, and after Stillbirth: A Qualitative Synthesis of Parents’ Experiences. Birth: Issues In Perinatal Care, 43(1), 6-19. doi:10.1111/birt.12217

Burden, C., Bradley, S., Storey, C., Ellis, A., Heazell, A. P., Downe, S., & … Siassakos, D. (2016). From grief, guilt pain and stigma to hope and pride – a systematic review and meta-analysis of mixed-method research of the psychosocial impact of stillbirth. BMC Pregnancy & Childbirth, 161-12. doi:10.1186/s12884-016-0800-8

http://www.perinatalhospice.org/faqs.html

See all References Fraser, Miller, Aldridge, McKinney, & Parslow, 2011) (Fraser, Miller, Aldridge, McKinney, & Parslow, 2011xFraser et al., 2011Fraser, L.K., Miller, M., Aldridge, J., McKinney, P.A., and Parslow, R.C. Life-limiting and Life-threatening Conditions in Children and Young People in the United Kingdom; National and Regional Prevalence in Relation to Socioeconomic Status and Ethnicity. University of Leeds, Leeds, England, United Kingdom; 2011

See the full statement for Perinatal palliative care as an essential element of childbearing choices: http://www.nursingoutlook.org/article/S0029-6554(16)30406-7/fulltext

You can further research multiple studies here: http://www.perinatalhospice.org/faqs.html