we can do better: maximizing neutral, compassionate care...

We Can Do Better: Maximizing Neutral, Compassionate Care Strategies for Vulnerable Populations

Dixie K. Weber MS. BSN, RN

National Director of Healthcare Programs, Family to Family Support Network

Learning Objectives

• Define neutral, compassionate care and how it structures care approaches.

• Identify populations which can be cared for using the neutral, compassionate care model.

• Discuss the unique needs of many underserved and under supported populations.

• Review innovative ideas and approaches to best serve vulnerable populations.

©2019 Family to Family Support Network™

Characteristics of Adult Learners

1. Adult bring a unique background to knowledge and life experiences to the learning.

2. Adults need to know why they need to learn something.

3. Adults learners learn best when the topic is of immediate value and has an immediate application.

4. Adult learning is an active process.

5. Adults are internally motivated and self-directed.


Neutral, Compassionat

e Care

Pregnancy is complex.

The need for unique family care for vulnerable populations such as pregnant incarcerated patients, women making an adoption plan, surrogacy, and pregnant women with a substance use issues are evolving at an incredible pace.

The health care systems in the US are having a difficult time keeping up with changing dynamics and care models for unique families.

Standardized healthcare models tailored to care for unique families do not exist.

Neutral compassionate care should be the approach to appropriately serve the needs of patients and families in vulnerable situations.


The Why?

Neutral, Compassionate Care

• AWARENESS: Own personal perceptions and biases.

• EMPHASIS: Improving care providers sensitivities.

• SUPPORT: Empower care providers to feel confident, educated and empowered to serve others.


Unique Populations

The unique needs of many underserved and under supported

populations including pregnant women struggling with substance use

disorder, women who are incarcerated during their pregnancy and families who are growing after

infertility through surrogacy and adoption.


• Pregnant Women Struggling

With Substance Use Disorder• Infant Adoption

Placement

• The Woman Who Is

Pregnant and

Incarcerated

• Families Struggling With

Infertility

• Surrogacy Arrangements


Grief and Ambiguous Loss

Ambiguous loss

2 Types of Ambiguous Loss:

• Type 1: Occurs with physical absence but psychological presence.

• A loved one is physically missing or bodily gone. • Common examples- divorce, adoption, infertility loss and loss of

physical contact with family or friends.

• Type II: Occurs with psychological absence but physical presence.

• A loved one is psychologically absent, emotionally or cognitively gone.

• Common examples- loss from dementia, traumatic brain injury, addiction, or depression.


“With ambiguous loss, there is no closure; the challenge is to learn how to live with ambiguity.” Pauline Boss,

Ph.D.

Physically gone but emotionally still present

Physically present but emotionally gone

Infertility and Ambiguous Loss

• Best practices align care with the approaches of Hospice.

• There is a level of grief which overlays all scenarios and care providers need to be trained to recognize and understand the grief.


Care Approaches During Infertility and Ambiguous Loss

• “We do infant bereavement and fetal demise well in healthcare… It’s time to change and begin to support infertility loss, adoption placements, surrogacy arrangements, the loss of being able to parent, and the loss of time with a child with sensitivity.” It’s imperative we extend our compassionate approaches to these populations.


What do I say when she is crying and

clearly upset?

I am so sorry. Is there anything I can do for

you?

Is there someone I can call for

you?

You Already Have The Tools To Be Successful!

Through the Lens of Grief and Loss Lets…

• Discuss Accurate Language

• Expand Our Understanding

• Neutral, Compassionate Care Strategies


Unintended Pregnancy and Adoption Placements

• Often there is an unintentional Pregnancy

• 50% of all pregnancies are unintended.

• A little less than ½ will choose abortion.

• A little less than ½ will choose to carry to term.

• <1% will choose adoption.

• Average age of woman who makes an adoption plan is 23.

• The option of adoption is rarely addressed by healthcare providers.


Adoption Definitions & Terms

• Definitions:

• Closed: No ongoing communication

• Semi-Open Adoption: 3rd party required

• Open Adoption: Contact information exchanged

• Kinship Adoption: Family

• Language:

• The Mom vs. The Birthmother

• Prospective Adoptive Parents vs. The Parents


The option of adoption

Old Language Accurate Language

“Put up for adoption” “Placed for adoption”

“Is she going to keep the baby?”

“Is she going to choose to parent?”

“Are you going to keep it?”

“Are you planning to parent?”

“You can adopt it out” “Have you considered asking someone else to parent?”


Ambiguous Loss In Adoption

“It’s counterintuitive. If we encourage strong prenatal attachment, aiming for a strong bond between mother and baby, the less complicated the grieving may be for both mother and baby if the bond is severed.

“We know from research that when a spouse dies, the grieving is cleaner and less complicated if that relationship was strong. The grieving process is more difficult if the relationship was shaky or ambivalent.”


Holden, Lori: The Open-Hearted Way to Open Adoption: Helping Your Child Grow Up Whole. (p.65)

“I am afraid she is getting too attached!”

Say “Hello,”Before Saying “Goodbye”

Adoption Placements Best Practices

Care of the woman- empower her to make choices throughout her prenatal and hospital experience.

• Give her “Voice” and “Choice”• She makes decisions for herself

and for the baby. • She can delegate decision-

making and care to the prospective adoptive parents.

• Stay neutral in the care provided. • Example: Praising a mom for

making an adoption plan removes her voice to change her mind.

Newborn Care

• The mother may choose to breastfeed or provide breastmilk during the hospital stay.• Support her to do so.

• The prospective adoptive mother may wish to initiate lactation prior to the birth.• Support her to do so.

• Remove barriers imposed by other who don’t recognize dual family care approaches. • Example: A nurse refusing to assist a

prospective adoptive mom to breastfeed because “it’s not her baby”.


Voice

Families Growing through surrogacy


Surrogacy Arrangements

• Accurate Language: Intended Parents, Surrogate or Gestational Carrier• Surrogate or Gestational Carrie is NEVER “the Mom”.

• Intended Parents• Can be a heterosexual couple, same sex couple, a single

man, a single women, or transgender individual or couple.

• The child may or may not be genetically related to the parents.

• Parent(s) may have history of infertility and loss.

• From the time of conception they are the PARENT(S).


An Intentional Pregnancy with a Contractual Arrangement

Surrogacy Arrangements

Traditional Surrogate: Donates her egg/ova and contributes DNA to the offspring. Most frequently seen with sibling surrogacy.

Gestational Carrier: Most now utilized gestational surrogacy.

• The Intended mother or egg donor provides the egg.

• Intended Father or sperm donor provides the sperm.

• Resulting embryo is transferred to the gestational carrier.


Will we see more Surrogacy?

• Infertility is a life crisis.

• 1 in 6 couples, or more than 7 million people, experience it and desire to have a biological child.

• 65% of women give birth after seeking medical help for infertility.

• The average couple spent $19,234 per fertility treatment, and every additional cycle could cost an additional $7,000 or more.

• Surrogacy is a financially viable option for some families.

• Gay and single men utilize surrogacy at the highest rate.


Will we see more Surrogacy?

Surrogacy offers the parent(s):

• More control

• Less fear of openness or an ongoing relationship

Long-term considerations:

• Implications later in life?

• Sperm, egg, or embryo donation- people may not realize their genetic link to one another.


Challenges- each state has different laws regarding surrogacy

Surrogacy ArrangementsBest practice

Dual Family Care in the Hospital

➢Provide medical care to the surrogate as an independent patient.

➢Provide medical care to the newborn(s) AND ensure the intended parents have a private room to care for their child and receive newborn discharge education. • When possible the infant should be admitted under

the intended parents last name. • Ensure there is a process in-place for the intended

parents to be the medical decision-marker for the infant(s).

Infant Feeding Plans:

• The surrogate may be contracted to provide breastmilk during and after the hospital stay.• Support her to do so.

• The intended mother may wish to initiate lactation prior to the birth.• Support her to do so.

• Alternative feeding plans may need to be in place with donor milk or a dietary formula product.

• Remove barriers imposed by other who don’t recognize dual family care approaches. • Example: Neonatologist who wouldn’t let the

intended mother breastfeed until her breastmilk was “tested” and proven safe.


Questions Not to ask unique families

• Who is the mother/father?

• Who is the real mother or real father?

• Where is the mother/father?

• Who carried the baby?

• How old was the child when you got them?

• How much did the child cost?

• How could you do that to your child?


Substance Use in

Pregnancy


Substance Use Disorder

• Substance Use Disorder (SUD)… is a pattern of symptoms resulting from the use of substance that you continue to use, despite experiencing problems as a result of taking the substance.

• “Substance Abuse” or “Drug User” are no longer acceptable terms.

• Opioid Use Disorder (OUD) defined as “a problematic pattern of opioid use leading to clinically significant impairment or distress”

• Approximately 8% of U.S. individuals have a substance use disorder.


Women Struggling with Substance Use Disorder During Pregnancy

• A majority of women with a

substance use disorder (SUD) are of

childbearing years. • Many have decreased access to medical care and

family planning services.

• They are at risk for poor health and unintended

pregnancy.

• Majority have psychiatric co-morbidities.

• Are at a higher risk for HIV, Hep C, and other

complications associated with IV drug use.


Women May Struggling with Substance Use Disorder During Pregnancy

• Effective interventions for SUD and OUD, including medication-assisted treatment (MAT), do exist, and healthy outcomes can occur for both the mother and the infant, but only when healthcare professionals can recognize and treat SUDs, which include OUD, and substance exposure in infants.


2018 Clinical Guidance for the Treatment of Pregnant and Parenting Women with Opioid Use Disorder and their Infants

https://store.samhsa.gov/product/Clinical-Guidance-for-Treating-Pregnant-and-Parenting-Women-With-Opioid-Use-Disorder-and-Their-Infants/SMA18-5054

https://store.samhsa.gov/product/Clinical-Guidance-for-Treating-Pregnant-and-Parenting-Women-With-Opioid-Use-Disorder-and-Their-Infants/SMA18-5054

Best PracticeChange the Script


Instead Of Non-Judgmental Alternative

Abstinence-based or Abstinence only Not including medication

They are addicted They have a chronic disease of addiction

Addict or Junkie Person with a substance use disorder; or Person with a serious alcohol use disorder

Clean Abstinent; or Abstaining from

Clean (urine test) Negative for substance X; or as expected

Dirty Actively using; Positive for substance use

Opioid replacement or opioid substitution therapy

Treatment that includes medication/treatment with X (name of medication)

Sober Well; or Healthy

Maryland Department of Health- Words Matter MDDestinationRecovery.org

NewbornsAccurate Language

• Substance Exposed Newborn is a newborn who tests positive for a substance(s) at birth, or if the mother tests positive for a substance(s) at the time of delivery, or the infant is identified by medical providers as having been prenatally exposed to substance(s).

• Substance Affected Newborn is one who has withdrawal symptoms resulting from prenatal exposure or demonstrated physical or behavioral signs that can be attributed to prenatal exposure to substances identified by a medical provider.


Breastfeeding • Understanding the benefits of breastfeeding for opioid-dependent

pregnant women and their neonates will enable clinicians to safely

recommend breastfeeding.

• For mothers who are being maintained on methadone or buprenorphine during

pregnancy, breastfeeding the newborn is recommended, provided the mother is

HIV negative, and abstains from alcohol, illicit drugs, amphetamines and has no

other contraindications to breastfeeding.

• The AAP had a previous recommendation that breastfeeding be

encouraged and allowed for mothers who were receiving 20 mg or less of

methadone in 24 hours.

• This has been changed and no dosing limits are mentioned.

• Benefits are that it allows the mother to take an active role in managing

the infant’s withdrawal symptoms, promotes bonding and provides the

mother with continued motivation to avoid other drugs and alcohol.

• Swaddling, Rooming-in, skin-to-skin contact, direct breastfeeding promotes

bonding, teaching a mother techniques to console her newborn and

recognize signs of physiological stress.



Intensive Parenting Approaches • Managing NAS (Neonatal Abstinence Syndrome) with the Eat, Sleep, Console

methodology.

• Several hospitals and health systems throughout the country have instituted some form of this included NAS NICU models and rooming in models.

• Parents/Caregivers are the treatment.

• Family-centered, non-pharmalogical approach.

• Identify potential families early on.

• Guiding families through CPS reports and partnering with Social/Nursing.

• Meeting certain criteria and milestones to reach discharge status.

• Criteria set as to what would constitute a NICU admission or step down to a rooming in set up.

• Results:

• Reduction of pharmacologic interventions.

• Reduction of length of stay.

• Improved bonding and parenting skills.

National Perinatal Association Workgroup on Psychosocial Support of NICU Parents…Aug.2017 “The Neonatal Intensive Parenting Unit: An Introduction.”


Yale New Haven Children’s Hospital

• Non-pharmacologic Interventions

• Standardized Non-pharmacologic Care on the Inpatient Unit

Standardized 4 non-pharmacologic interventions:

(1) Infants were placed in a low stimulation environment with dimmed lights, muted televisions, and reduced noise.

(2) Staff engaged parents continuously in the care of their infants (volunteers were used if a family member was not available); parents were strongly encouraged to room-in, to feed their infants on demand, and to tend to their infant if crying.

(3) Staff were trained to view non-pharmacologic interventions as equivalent to medications; when increased intervention was warranted, the approach was to increase the involvement of the parents before using pharmacologic treatment.

(4) In conjunction with the well-baby nursery (WBN), we encouraged breast-milk feeding of all infants for whom there were no contraindications (i.e., illicit drug use or HIV).

• Outcome Findings: Optimize non-pharmacologic interventions with a low-stimulation environment, an intense focus on the involvement of parents, and continuous assessment of the infant’s comfort.

Create an environment where parents aren’t merely allowed to visit their infant to one in which they were empowered to be the most important part of their infant’s care.

2017 by the American Academy of Pediatrics

Women in Prison


• The number of women in prison is increasing at nearly twice the rate of male offenders.

Women in Prison

• Fully 80% of women in prison are mothers, leading to estimates

of 1.3 million American children with mothers in prison.

• "The typical incarcerated female is of child rearing age,

unmarried, a minority group member, a mother of minor

children, undereducated, economically marginal, and has

considerable experience with or is dependent on drugs or

alcohol”

• Studies have that the children left behind as a result of maternal

incarceration are vulnerable to suffering significant attachment

disorders.

• Long Term Impact: They are more likely to become addicted

to drugs or alcohol, engage in criminal activity, manifest

sexually promiscuous behavior, and dangerously lag behind

in educational


Women who are incarcerated during pregnancy

• 38 states received a D/F grades for their failure to provide prenatal care.

• 44 states do not make advance arrangements for deliveries with the participating hospital.

• The American Civil Liberties Union says shackling incarcerated pregnant women is "dangerous" and "inhumane." The American College of Obstetricians and Gynecologists says it puts the health of the mother and baby at risk.


First Steps ActPassed December 2018

This bill would only pertain to women incarcerated in federal facilities and under the jurisdiction of the U.S. Marshals Service, so it would not pertain to people incarcerated in state prisons, which is where the majority of women are incarcerated. It would also not pertain to women housed in local jails. And on top of that, it only addresses the issue of shackling pregnant women. That is an important step to take, but it is only the tip of the iceberg when it comes to the care of pregnant and postpartum women in custody.


TITLE III—RESTRAINTS ON PREGNANT PRISONERS PROHIBITED

SEC. 301. USE OF RESTRAINTS ON PRISONERS DURING THE PERIOD OF PREGNANCY AND POSTPARTUM RECOVERY

PROHIBITED.

(a) IN GENERAL.—Chapter 317 of title 18, United States Code, is amended by inserting after section 4321 the following:

“§ 4322. Use of restraints on prisoners during the period of pregnancy, labor, and postpartum recovery prohibited

https://www.congress.gov/bill/115th-congress/house-bill/5682/text#H169162FE88434970931199E724EDDAFD

http://uscode.house.gov/view.xhtml?req=granuleid:USC-prelim-title18-chapter317-front&num=0&edition=prelim

http://uscode.house.gov/quicksearch/get.plx?title=18&section=4321


Women who are

incarcerated

Best PracticesBEFORE,

During and After

Pregnancy

Incarcerated Pregnant

Patient

Best Practices

Pre-Birth Arrangement with

the Hospital

Prenatal Classes and Childbirth Preparation offered at the

Prison

Guards Female only Guards

Hospital OB Triage Infrequent visits

(Prison staff trained by hospital RNs)

Ambulation During Labor Fully supported

Shackling Never used

Pain Medication Offered

During Labor

Informed consent & patient education provided

(All patients offered pain management)

Skin to Skin and

Breastfeeding

Offered and encouraged.

Baby stays with the mother

Care for the Baby Provided by mom

Support Person Present throughout the hospital

Baby Care Education for

Person Parenting the Baby

Offered in prenatal classes and provided

throughout the mother’s stay

Lactation BF is supported in the hospital

Pumping room at Prison. Baby visits daily for skin-to-skin


March 2008, the Indiana Women’s Prison implemented the Wee Ones Nursery (W.O.N.)

• The W.O.N. program is modeled after a similar program in Ohio. • The intent of the W.O.N. program is to provide parenting education and to

ensure quality time to strengthen the mother-infant bond during the initial months after the infant’s birth.

W.O.N. Criteria• pregnant at the time she is delivered into the custody.• Offenders earliest possible release date is not more than eighteen months after

the projected delivery date.• never been convicted of a violent crime or any type of child abuse or child

endangerment must meet established medical and mental health criteria• has at least an eighth grade reading level.• is legal custodian of the child; no one else has been granted custody or shared

parenting privileges.• must be willing to sign a covenant agreeing to abide by all the rules of the W.O.N.

program.

https://www.in.gov/idoc/2857.htm

Women in the Wee Ones program have a recidivism rate of 18 percent, compared with 35 percent statewide.

https://www.in.gov/idoc/2857.htm

neutral compassionate care

What’s Best Practice?• …ensure women in unique or complex

situations receive intentional and individualized care during and after pregnancy.

• Neutral, compassionate care requires caretakers to set aside their personal biases and assist the woman to have a neutral space to make decisions about her care which are right for her.


• Pregnant Women Struggling

With Substance Use Disorder• Infant Adoption

Placement

• The Woman Who Is

Pregnant and

Incarcerated

• Families Struggling With

Infertility

• Surrogacy Arrangements

Questions


Dixie K. Weber MS, BSN, RNNational Director of Healthcare Program

Family to Family Support Network

Email: [email protected]

LinkedIn: www.linkedin.com/in/dixie-k-weber-ms-bsn-rn-44163575

Website: https://www.familytofamilysupport.org/

AWHONN Video: https://videos.awhonn.org/family-to-family-support-network


Thank you!

Content Contributors and Subject Matter Experts:• Melissa Ward MSN, BSN, RN, St. Luke’s Health System Unique Families Program Manager• Kristy Schmidt MN, RN, NEA-BC, St. Luke’s Health System Perinatal Program Manager

mailto:[email protected]

http://www.linkedin.com/in/dixie-k-weber-ms-bsn-rn-44163575

https://www.familytofamilysupport.org/

https://videos.awhonn.org/family-to-family-support-network

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