The Point - April 2015
In this issue:
- Perinatal Hospice Resources in the U.S.
- CMDA’s Abortion Ethics Statement
- CMDA’s Human Life Ethics Statement
Excerpted from "Irish group Every Life Counts launches global campaign to end ‘incompatible with life’ label," LifeSiteNews. March 11, 2015 — Irish families have joined with international medical experts and disability advocacy groups to launch the Geneva Declaration on Perinatal Care at the United Nations. The Declaration, which is the centerpiece to a global campaign to end disability discrimination caused by the “incompatible with life” label, has already been signed by more than 200 medical practitioners and researchers and 27 disability and advocacy NGOs. It aims to improve care for mother and baby where a life-limiting condition has been diagnosed before or after birth.
At the event, families from Ireland, Northern Ireland, Canada, Spain and Switzerland said that the label “incompatible with life” was not a medical diagnosis and was causing “lethal discrimination against children diagnosed with severe disabilities, both before and after birth.”
Barbara Farlow, whose ground-breaking research led to a new understanding of the experiences of families where children had a life-limiting condition, said that the label “incompatible with life” had been shown to lead to sub-optimal care after birth and the phrase dehumanised children.
Professor Giuseppe Benegiano, former director of special programmes for the UN, said that the UN should give support for this important initiative against disability discrimination. Professor Bogdan Chazan, an imminent obstetrician from Poland, said that babies with a challenging diagnosis deserved better care than abortion.
CMDA Member and Care Net Medical Advisor Sandy Christiansen, MD, FACOG: “The mark of a civilized society is the degree to which it protects its weakest most vulnerable members. Psalm 82:3 admonishes us to ‘Defend the weak and the fatherless; uphold the cause of the poor and the oppressed’ (NIV 2011). The Geneva Declaration is a beautiful example of the fulfillment of this passage.
“Routine prenatal testing seeks to detect fetal abnormalities before birth. With the discovery of a problem, what choices are offered? Data across the globe report that anywhere from 29 percent to 85 percent of fetuses with Down Syndrome are aborted.123 But some families are choosing a different path and finding joy in the journey. Turning away from the offered termination of pregnancy for a fCommentaryetal anomaly that has been pronounced ‘incompatible with life,’ some couples have instead chosen to embrace every minute of life their child has—both inside and outside the womb. They face pressure from healthcare professionals to abort and experience lack of understanding from family and friends. Yet, 97 percent of respondents in a 2012 study of families with children with trisomy 13 and 18 described their child as happy and parents reported these children enriched their family.4 Their experience was incongruent with the dismal picture predicted by their physicians. The most common negative comment made by parents in this study was a sense that healthcare professionals did not see their baby as having value, as being unique and as being a baby.
“A recent study looked at women who aborted and women who carried after learning their babies were diagnosed with a life-limiting diagnosis. The abortion group experienced more grief, depression and emotional stress, and they also had symptoms consistent with post traumatic stress disorder (PTSD) for up to seven years after the abortion as compared to the women who chose to carry group.
“Evidence is mounting to support the benefits of taking a hands-off approach to a life-limiting prenatal diagnosis and simply allowing couples to spend time with their unborn babies for as long as they have them. As Christian healthcare professionals, we should be prepared to offer families a different option to the default termination solution so often given for an adverse prenatal diagnosis. Words need to be chosen carefully, avoiding terms like ‘incompatible with life;’ instead, we should use words that affirm the baby’s life and value as a human being. Couples who choose to carry their child should be connected to resources that provide the support and understanding they desperately need.
“Perinatal hospice5 is a unique solution and can be thought of as ‘hospice in the womb.’ It is easily incorporated into routine prenatal care and birth planning. A team approach can include obstetricians, perinatologists, labor and delivery nurses, NICU staff, chaplains/pastors and social workers, as well as genetic counselors and traditional hospice professionals. It enables families to make meaningful plans for the baby's life, birth and death, honoring everyone.”6
1Siffel, C., Correa, A., Cragan, J., & Alverson, C. (2004). Prenatal Diagnosis, Pregnancy Terminations And Prevalence Of Down Syndrome In Atlanta. Birth Defects Research Part A: Clinical and Molecular Teratology, 70(9), 565-571.
2Khoshnood B, De Vigan C, Vodovar V, Goujard J, Goffinet F (2004) A population-based evaluation of the impact of antenatal screening for Down's syndrome in France, 1981–2000. BJOG 111: 485–490.
3Leroi, A. (2006). The future of neo-eugenics. Now that many people approve the elimination of certain genetically defective fetuses, is society closer to screening all fetuses for all known mutations? EMBO Reports, 7(12), 1184-87. Retrieved April 2, 2015, from http://embor.embopress.org/content/7/12/1184.
4Janvier A. Farlow B. Wilfond B. (2012)The Experience of Families With Children With Trisomy 13 and 18 in Social Networks Pediatrics Vol. 130:293 -298 (doi: 10.1542/peds.2012-0151).
5Hoeldtke, N., & Calhoun, B. (2001). Perinatal Hospice. American Journal of Obstetrics & Gynecology, 185(3), 525-29.
6Calhoun, B., Napolitano, P., Terry, M., Bussey, C., & Hoeldtke, N. (2003). Perinatal hospice. Comprehensive care for the family of the fetus with a lethal condition. Journal of Reproductive Medicine, 48(5), 343-8.
Excerpted from “Instilling empathy among doctors pays off for patient care,” CNN. March 26, 2015 — Developed by medical faculty at Duke, the University of Pittsburgh and several other medical schools, "Oncotalk" is part of a burgeoning effort to teach doctors an essential but often overlooked skill: clinical empathy. Unlike sympathy, which is defined as feeling sorry for another person, clinical empathy is the ability to stand in a patient's shoes and to convey an understanding of the patient's situation as well as the desire to help.
Clinical empathy was once dismissively known as "good bedside manner" and traditionally regarded as far less important than technical acumen. But a spate of studies in the past decade has found that it is no mere frill. Increasingly, empathy is considered essential to establishing trust, the foundation of a good doctor-patient relationship.
Studies have linked empathy to greater patient satisfaction, better outcomes, decreased physician burnout and a lower risk of malpractice suits and errors. Patient satisfaction scores are now being used to calculate Medicare reimbursement under the Affordable Care Act. And more than 70 percent of hospitals and health networks are using patient satisfaction scores in physician compensation decisions.
"The pressure is really on," said psychiatrist Helen Riess. The director of the empathy and relational science program at Massachusetts General Hospital, she designed "Empathetics," a series of online courses for physicians. "The ACA and accountability for health improvement is really heightening the importance of a relationship" between patients and their doctors when it comes to boosting adherence to treatment and improving health outcomes.
CMDA Past President and Oncologist Al Weir, MD: “Is it possible to ‘instill empathy’ into our healthcare professionals, and is it a good thing to try?
“It is certainly good for us to have and demonstrate real compassion for our patients. Those of us who love Christ should have His compassion flowing naturally from us to those who are suffering. If we do not, there is something wrong with our relationship with the Christ. Perhaps, if we learn to love Him more, we will indeed love our patients more and demonstrate that compassion better.
“This is foremost, and all the training in the world cannot mimic true love for those we serve.
“However, though our character of love is most important, we certainly also need to develop communication skills to best demonstrate that love in a way that best demonstrates the heart of God. Communication skills can indeed be learned and practiced so that we ‘do best’ what we ‘are’ inside. I am familiar with the training instruments listed in this article. They, among others, can be quite valuable tools for Christian healthcare professionals to use in honing our skills, so that our communication actions might match our hearts of compassion.
“Just as a missionary physician must learn new roads to carry his message of Christ into the deserts of northern Sudan, all of us should learn new skills of communication through which we may best carry the message of God’s love to each patient we serve.”
Excerpted from “HIV ‘Epidemic’ Triggered by Needle-Sharing Hits Scott County, Indiana,” NBC News. March 25, 2015 — An HIV "epidemic" fueled by needle-sharing opiate addicts has infected at least 72 people in one southern Indiana county as Gov. Mike Pence plans to declare a public health emergency in that community on Thursday. The outbreak's swift acceleration in Scott County — beginning with seven known HIV-positive patients in late January — has prompted state officials to ask the Centers for Disease Control and Prevention to deploy investigators to test residents and to help control further spread of the virus, Pence said.
The epidemic's true epicenter is the town of Austin, in northwestern Scott County, said Dr. William Cooke, medical director at Foundations Family Medicine. He opened the facility in Austin about 10 years and, since then, he's watched opiate abuse take a far deeper hold.
Used needles litter roadsides, ditches and yards, said Cooke, who has been publicly voicing his concerns about a brewing HIV outbreak. On Wednesday, Cooke also lobbied Indiana lawmakers to launch a clean-needle program — a strategy that, in his vision, would offer safe fresh needles and safe places to dispose of dirty needles while also connecting participating residents to addiction therapists.
Austin's population is about 4,200 people, according to the U.S. Census Bureau, and the majority of the nearly 80 known HIV cases are people who live in that town, Cooke said. Poverty is driving the mass opiate-addiction rate — and, now, the HIV epidemic, Cooke said. “We need help. But that costs money. My clinic serves the poorest people in Indiana, potentially the poorest in the country," Cooke said. "We do a sliding scale here. If they can, they may pay us 10 dollars for care. I'm hopeful this declaration provides the funding we have needed.”
CMDA Member and Assistant Professor at Indiana Wesleyan University Reginald Finger, MD, MPH: “The HIV infection outbreak in Scott County, Indiana, straddling I-65 between Indianapolis and Louisville, occurred because at least three unfortunate factors came together at once. Lying astride a heavily traveled north-to-south transportation corridor in the Eastern U.S., it unfortunately acts as a pipeline for illegal drugs. The county struggles with poverty and poor health, ranking last among Indiana counties for health indices by the Robert Wood Johnson Foundation. Many communities nationally, however, are just as much at risk. Any one of them has enough people injecting illegal drugs with shared needles to fuel a lethal epidemic if the right virus were introduced, as it was to Scott County. Even in this age of anti-retroviral medications, HIV still makes a mess of human lives, while piling up millions of dollars in healthcare costs onto a community already struggling to make ends meet.
“What is the lesson for healthcare professionals in similar communities across the country? First: one needs a high index of suspicion not only for HIV infection itself but for any of the associated risk factors and conditions. Hepatitis C infection is often seen first. Not every injecting drug user fits a ‘stereotypical’ profile. I have decided never to be offended when a doctor, pastor or counselor asks me a blunt question about lifestyle choices, even ones that may be far from my experience. My response is ‘No, sir, but thank you for asking.’ By the question, I know that this professional is on the ball, interested not only in whatever may affect my health—as important as that is—but on protecting my community as well. Next, be well connected to social, legal and spiritual resources in your community. You may be the only human services professional that your patient has seen in a long time, especially if the person has low regard for ‘the system’ and came to you only because their need is acute.
“Finally, each clinician must remember that better health for our nation depends on community and environmental factors, yes, but also on individual decisions and interventions that can only occur one patient or family at a time. The person whose life you touched in the office today may be the index case of the epidemic that did not happen—because you were there!”