RATE: 7.5 Estimated number of preterm births per 100 live births RANK: 144
(US Rate: USA – 12% Rank: 54)
Bulgaria, officially the Republic of Bulgaria is a country in Southeast Europe. It is bordered by Romania to the north, Serbia and North Macedonia to the west, Greece and Turkey to the south, and the Black Sea to the east. The capital and largest city is Sofia; other major cities are Plovdiv, Varna and Burgas. With a territory of 110,994 square kilometres (42,855 sq mi), Bulgaria is Europe’s 16th-largest country. Since adopting a democratic constitution in 1991, the sovereign state has been a unitary parliamentary republic with a high degree of political, administrative, and economic centralisation. The population of seven million lives mainly in Sofia and the capital cities of the 27 provinces. The population has declined since the late 1980s.
Bulgaria began overall reform of its antiquated health system, inherited from the communist era, only in 1999. In the 1990s, private medical practices expanded somewhat, but most Bulgarians relied on communist-era public clinics while paying high prices for special care. During that period, national health indicators generally worsened as economic crises substantially decreased health funding.
The subsequent health reform program has introduced mandatory employee health insurance through the National Health Insurance Fund (NHIF), which since 2000 has paid a gradually increasing portion of primary health care costs. Employees and employers pay an increasing, mandatory percentage of salaries, with the goal of gradually reducing state support of health care. Private health insurance plays only a supplementary role. The system also has been decentralized by making municipalities responsible for their own health care facilities, and by 2005 most primary care came from private physicians. Pharmaceutical distribution also was decentralized. According to the survey conducted by the Euro health consumer index in 2015 Bulgaria was among the European countries in which unofficial payments to doctors were reported most commonly.
In the early 2000s, the hospital system was reduced substantially to limit reliance on hospitals for routine care. Anticipated membership in the European Union (2007) was a major motivation for this trend. Between 2002 and 2003, the number of hospital beds was reduced by 56 percent to 24,300. However, the pace of reduction slowed in the early 2000s; in 2004 some 258 hospitals were in operation, compared with the estimated optimal number of 140. Between 2002 and 2004, health care expenditures in the national budget increased from 3.8 percent to 4.3 percent, with the NHIF accounting for more than 60 percent of annual expenditures.
G20 leaders: Achieving universal health coverage should top your agenda
June 27, 2019 Leading experts publish commentary in The Lancet on eve of summit in Japan
SEATTLE – G20 leaders meeting in Japan this week should focus on fulfilling their obligations to improve and expand their nations’ health care systems.
In a commentary published today, 20 health data, financing, and policy experts contend that funding for low- and middle-income nations must be increased to address the growing impacts of climate change, wars and conflicts, and a global political trend toward nationalism. They also argue that increased domestic funding is needed to achieve the United Nations’ Sustainable Development Goals (SDGs), including universal health coverage.
“Achieving universal health coverage should be at the top of the agenda for this meeting of world leaders,” said Dr. Christopher Murray, Director of the Institute for Health Metrics and Evaluation at the University of Washington’s School of Medicine. “The G20 leaders should assess how to encourage channeling resources to improve primary health care, as well as prevention and treatment of non-communicable diseases and to strengthen and support leadership, governance, and accountability across all levels of health systems. We’ve witnessed a decade of plateaued funding, and with the deadline to meet the SDGs just 11 years away, the world is watching.”
Dr. Murray and other authors examined trends in spending for international development between 2012 and 2017, and are urging the G20 leaders to address three questions:
- How do you allocate funds to deliver equitable health improvement in people’s lives?
- How do you deliver those funds to strengthen health systems?
- How do you support domestic spending in poor countries and create more effective partnerships to deliver universal health coverage?
“The landscape of development assistance for health is evolving, and therefore ripe for any desired realignment,” the authors write in the commentary, which was published in the international medical journal The Lancet. “Reductions in child poverty and fertility throughout the world mean that many countries are undergoing demographic and epidemiological transitions, with their populations living longer and enduring a more diverse set of ailments.”
The commentary notes that from 2000 to 2010, development assistance for health grew at a rate of 10% annually, though since 2010, funding growth has plateaued at 1.3% annually. In 2018, $38.9 billion (USD) was provided, with 65.2% coming from G20 members. This $38.9 billion represents 0.05% of the G20 nations’ combined economies.
In addition, the commentary calls out the G20 nations for their levels of funding, the annual rate of change in funding provided between 2012 and 2017, and the health sectors for which those funds were earmarked. Among the highlights:
- India (43.4%), Brazil (37.2%), and Indonesia (30.9%) had the highest percentage increases in development assistance provided between 2012 and 2017.
- The greatest decreases in development assistance provided between 2012 and 2017 were in Saudi Arabia (-19.4%), Australia (-16.0%), and Russia (-10.1%).
- The US’s increase over the same time period was 0.9%, while the UK’s was 2.6%.
- South Africa was the lowest G20 contributor with $5.2 million spent in 2017, while the US was the highest at $14.4 billion.
“The global health challenges and expansive set of global health goals in the SDGs require a new approach to address pending questions about how development assistance for health can better prioritize equity, efficiency, and sustainability, particularly through domestic resource use and mobilization and strategic partnerships,” the authors write.
Four Steps Leaders Can Take to Increase Joy in Work
Jessica Perlo, MPH, Director, Institute for Healthcare Improvement
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NICU Moms Are Struggling With Mental Health Problems — And They Aren’t Getting Help
Up to 70 percent may suffer from postpartum depression. -4/13/2018
-By Catherine Pearson
Up to an estimated 70 percent of moms whose babies spend time in the NICU may grapple with symptoms of depression — yet there are not good screening measures in place to help them.
A few weeks into her third trimester, Stephanie May, 32, called her OB-GYN. Her back hurt and she was having cramps, all of which sounded fairly typical to the doctor on call. He suggested she take it easy and hydrate, so May settled in for some sleep.
When she woke up, she was in full-on labor and rushed to the emergency room. By the next morning, her daughter Evie was born — nine weeks early. May saw her for about a second before the newborn was whisked up to the neonatal intensive care unit while May stayed behind on the delivery table, stunned.
“When they finally took me up to see her, she was hooked up to all these monitors. I couldn’t see her face. I couldn’t feel her skin. I didn’t know what to do,” May recalled. “My first reaction was to try not to feel anything … I was so afraid I was going to fall in love with this baby and then she would be gone.”
Over the next 54 days, May did her best to adapt to the peculiar rhythms of the NICU. She learned to hold her daughter without tugging at any wires and to stay calm when Evie forgot to breathe — patting her tiny foot or arm as a reminder while monitors blared. She dutifully hooked herself up to the hospital breast pump every few hours, intent on producing exactly the 32 mL of milk her daughter required per feeding.
But as the days wore on, May felt herself being pulled under by anxiety and depression. She worried every time someone coughed or cleared their throat. She worried they would never leave the hospital. Only once did a doctor or nurse ask May how she was holding up emotionally — nearly three weeks into her daughter’s hospital stay.
“He knelt by me and asked, ‘Is there anything I can do for you?” May recalled, quickly adding that the doctors and nurses were wonderful, lest she come across as ungrateful. “It was the first time someone made me feel like a mom and reminded me I had to take care of myself, too.”
Though May believes she suffered from postpartum depression, she never received an official diagnosis.
Based on the most conservative of estimates, 11 percent of moms in the United States suffer from symptoms of postpartum depression (PPD), and postpartum anxiety may be even more common. But NICU moms suffer from postpartum mood issues at much higher rates. There are no hard and fast numbers, but studies have suggested that up to 70 percent of women whose babies spend time in the NICU experience some degree of postpartum depression, while up to one-quarter may experience symptoms of post-traumatic stress disorder.
It’s easy to see why. These women’s babies are sick or premature — or both. They must learn the particular protocols of the NICU, all while hormonal, exhausted and in recovery themselves. NICUs have done a remarkable job of transforming outcomes for the most vulnerable babies, but it has not traditionally been their job to screen and help women. That’s why so many women like May feel like they’ve slipped through the cracks.
“I don’t know if the majority of NICUs have a psychologist on board or a social worker who can provide an assessment,” said Kathleen Hawes, a psychologist who does happen to work in a NICU at Women & Infants Hospital of Rhode Island. Hawes worked on a 2016 study that found that roughly 20 percent of moms who had preterm babies suffered postpartum depression one month after discharge, regardless of how early their infants were born. “I think we’re doing a good job, but we could be doing a better job.”
Unfortunately, screening women isn’t an easy undertaking — even with buy-in from doctors and nurses.
Research has found that NICUs struggle to overcome even simple challenges, like tracking down moms while they’re in the hospital, and then finding ways for nurses to incorporate mental health wellness screening into their typical jam-packed days. At pediatric hospitals, it’s unclear who is trained to see adults, or what degree of liability the hospital then takes on. Whose chart does screening information go on? Who is billed?
“One of the things that has been hard is that medicine is so siloed,” said Dr. Samantha Meltzer-Brody, a perinatal psychiatrist who runs the University of North Carolina’s Center for Women’s Mood Disorders. That’s why neonatal intensive care has not interacted well maternal mental health, she explained.
“That’s what needs to happen, and there’s been a push to make it happen,” Meltzer-Brody added. “You have some places that are doing it well, but to have it systematically rolled out across the U.S. is a big, long, slow process.”
Groups like the American College of Obstetricians and Gynecologists and the U.S. Preventive Services Task Force now recommend that all women be screened for mood issues at least once in the perinatal period by using one of several questionnaires that can help catch PPD — typically at the six-week postpartum check-up. But such a screening would be one of many things crammed into what is often a 15- or 20-minute appointment that needs to cover a lot of ground.
That was true for Gabriele Ogoley, 28, whose water broke when she was 28 weeks pregnant. After five weeks of bed rest in the hospital, she delivered her son at 32 weeks and slowly slid into depression, which manifested itself primarily in bouts of anger that were totally out of character for her.
Ogoley’s OB-GYN did ask how she was doing at her six-week appointment, but in a casual way, almost like an afterthought.
“It was like, ’How are you? How’s the baby? How’re things?” Ogoley said. Like May, she does not remember being asked at any other point if she was doing OK, despite a long NICU stay.
In fact, it was a friend who had struggled with PPD herself who finally urged her to get help. When Ogoley did finally call her doctor’s office and connect with her nurse, she remembers feeling ashamed.
“I told them, ‘This is really embarrassing for me,’” Ogoley recalled. She didn’t want anyone to think she was a bad mom or unhappy her son was home.
Laura, 42, who requested that only her first name be used to protect her children’s privacy, remembers laughing awkwardly with her OB-GYN about whether she was really experiencing depression or simply having an appropriate response to giving birth to twins 11 weeks early.
“When your baby can die from a cold, that makes the world a very scary place,” she said. “It’s very hard to tell how much of it is a ‘normal’ response to what is happening, and how much of it is, ‘Oh, man, I think I have a problem. I’m really overwhelmed.’”
Indeed, experts say it can be hard to figure out that line — particularly because clinical diagnosis is a somewhat subjective art.
“Almost always, with NICU moms, comes some grief. We don’t treat grief; we support grief, but that emotional process is totally normal,” said Kate Kripke, a clinical social worker and founder of the Postpartum Wellness Center of Boulder. “That is not necessarily a clinical depression or anxiety, even if it might, for a little while, look the same.”
Kripke thinks it would be beneficial to reframe our broader understanding of perinatal mood issues not as an exception to the norm, but almost as the inevitable outcome for women whose biological, psychological and social needs are not sufficiently met. The way Kripke sees it, if women aren’t sleeping; if they’re just eating bad hospital food and can’t bring themselves to leave their babies’ isolettes to go outside; if their hormones are going haywire and they’re finding it hard to connect with friends and family who simply cannot fathom what life in the NICU is like, well, of course they are at risk for developing a more serious mental health disorder.
The failure of the system starts with not adequately screening moms while they are in the NICU, and ends with not allowing them to marshal more resources and support after they have been diagnosed. Laura, for example, didn’t start to realize she was suffering from what she believes was a combination of PPD, PPA and PTSD until at least a year after giving birth — and didn’t get on medication to manage her symptoms until her twins were school-age.
And when May asked for her short-term disability to be extended by two weeks, she was told there was no coverage for a case of the “baby blues.” That was just six week after her daughter was born and still fighting for her life in the NICU.
“A lot of this is about continuing to educate providers on what questions to ask and what to look for and how to set referral systems into place,” Kripke says. “Moms who say, ‘Everyone asked about my baby and no one asked about me’ — that’s atrocious. That is not OK. But that is happening because those people don’t know what to ask.”
Lullabies soothe NICU babies, and parents too
UW Medicine Published on Mar 20, 2019
A parent’s voice is nurturing to a baby. In UW Medical Center’s neonatal intensive care unit, Gayle Cloud works with parents to use their voices as therapy. They create custom lullabies for their babies. It helps parents bond with their baby, and it’s a way to soothe the stress of premature birth. In the video below, Cloud works with Danielle and Shannon Turner to write a lullaby for their newborn, Kassie.
“Rwandan National Neonatal Protocol: “Non-electric Infant Warmer”
By Marthe Kubwimana, OPEN Pediatric – Published on Jul 11, 2019
In this chapter of the Rwandan National Neonatal Protocol, Marthe Kubwimana introduces the non-electric infant warmer. She outlines the circumstances when an infant warmer is useful, how it can prevent hypothermia, and how it can be used to complement Kangaroo Mother Care. She also describes the proper techniques for preparation, use, cleaning and storage of the infant warmer.
Initial publication: July 11, 2019.
Research breakthrough to safely monitor preterm babies
August 30, 2019 by University of South Australia Credit: CC0 Public Domain
Researchers at the University of South Australia have successfully trialled new computer vision technology to safely monitor the heart and respiratory rates of premature babies in neonatal units.
In a study led by UniSA neonatal critical care specialist Kim Gibson and engineer Professor Javaan Chahl, the team has demonstrated a new non-contact way to monitor preterm infants in intensive care.
The infants were filmed using high-resolution cameras at close range and their vital physiological data extracted using advanced signal processing techniques that can detect subtle color changes and movement not visible to the human eye.
“Our computer vision system captures subtle signals in a preterm baby, such as invisible skin color variations that can be amplified to measure cardiac activity,” Gibson says. “We can also apply algorithms to magnify movement to give nursing staff a clear picture of what is going on with preterm infants.”
The technology has been successfully trialled at Flinders Medical Centre Neonatal Unit, monitoring 10 premature babies.
The preterm infants were selected as they are prone to episodes of bradycardia (slow heart rate) and apnea (when breathing stops) – conditions which are difficult to monitor without the use of an electrocardiogram which relies on expensive, adhesive electrodes that can damage infants’ fragile skin and leave them vulnerable to infection.
“An unexpected finding was that our system was able to accurately detect apnea when the ECG monitor did not,” Gibson says.
She says further research is needed but preliminary results show that the non-contact system could help monitor the health of preterm babies, particularly when resources are scarce, and the risk of infection is high.
Gibson is the lead author of a paper, “Non-contact heart and respiratory rate monitoring of preterm infants based on a computer vision system” published in Pediatric Research.
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Peer Reviewed Research, News and Information in Neonatal and Perinatal Medicine
We found this abstract to be very informative, general yet powerfully instructive. Please enter the website to review the article summarized below and to view the excellent and instructive pictures. This information may be great value to the global healthcare community at large and to our wide variety of providers serving the moms and babies, including the global preterm birth community.
Tips for Medical Students and Non-Neonatologists on Physical Examination of the Newborn and Important Aspects of Early Newborn Care
An Irish Perspective Aisling Smith, MD, Robert McGrath, MD, Naomi McCallion, MD, and Tom Clarke, MD
Peer Reviewed-“This paper will outline the Irish approach to good physical examination technique of the newborn for a number of the more challenging and error-prone aspects of the physical exam, which non-neonatal specialists and medical students may find helpful.”
Abstract: Appropriate physical examination technique of the newborn infant is vital to ensure the detection of pathology and the timely instigation of required management. No infant should be viewed as ‘routine,’ and all babies must have a comprehensive physical examination completed prior to discharge home. This paper will outline an Irish approach to good physical examination technique of the newborn for a number of the more challenging and error-prone aspects of the physical exam, which non-neonatal specialists and medical students may find helpful. Introduction Appropriate physical examination technique of the newborn infant is vital to ensure the detection of pathology and the timely instigation of required management or onward referral. Medical students are typically instructed on neonatal physical examination during their paediatric clerkships and may not receive any additional neonatal training prior to graduation. The duration of paediatric and neonatal medical student clerkships varies between Irish universities. Many medical specialties interact with neonatal patients besides neonatal or paediatric departments including ophthalmology, orthopaedics, general surgery, dermatology, and general practice. In particular, approximately 2,950 family doctors (general practitioners, GPs) in Ireland provide essential services for newborn care including 2 and 6 weeks checks, monitoring feeding, weight gain, head growth, and development. (1) Such visits provide a key window of opportunity for the early detection of pathology. The curriculum of the School of Medicine at the Royal College of Surgeons in Ireland (RCSI) is designed to give medical students a sound knowledge of the science and art of medicine. RCSI medical students receive 7 weeks of training in paediatrics during their 4th of 5 years of medical school, of which one week is dedicated specifically to neonatal training in a tertiary maternity hospital. During their week of neonatal clerkship, correct physical examination technique of the newborn is emphasised. Students attend several tutorials detailing neonatal physical examination, have the opportunity to perform neonatal physical examination safely on well infants on the postnatal wards and also have access to online videos teaching comprehensive assessment of the neonatal cardiovascular system, head, face and neck, gastrointestinal system, neurological system, and hip examination. At the end of their paediatric rotations, the students’ neonatal physical examination skills are thoroughly tested via a clinical examination of a well newborn, to ensure high standards of clinical practice and safety after graduation. One of the authors (TC), a professor of neonatology, has noted an improvement in the clinical examination skills of RCSI medical students at the end of their rotation assessments in recent years. The majority of neonatal medical student education is now provided by postgraduate paediatric and neonatal trainees who have taken time out of their specialist training schemes to pursue full-time research for higher degrees. It is probable that education delivered by those pursuing neonatology as a career improves the knowledge base of students regarding the newborn physical examination.
It is critically important that all professionals involved in newborn care, including junior doctors, surgeons, midwives, and advanced nurse practitioners are fully versed in the appropriate physical examination technique of the newborn. No infant should be viewed as ‘routine,’ and all babies must have a comprehensive physical examination completed prior to discharge home. This paper will outline the Irish approach to good physical examination technique of the newborn for a number of the more challenging and error prone aspects of the physical exam, which non-neonatal specialists and medical students may find helpful.
General Inspection of the Newborn Doctors performing newborn examinations should position themselves so that they easily look at both the parents and baby and smile reassuringly, to all, as needed. Well trained doctors will quickly observe the colour, respiratory status, level of alertness, posture, movement, and nutrition status of the infant. The normal baby is typically a pale pink colour. Skin colour should be observed for cyanosis, pallor, jaundice, and plethoric appearance. Central cyanosis should be assessed under the infant’s tongue, is always an abnormal finding and may indicate a congenital heart lesion or lung pathology. Acrocyanosis, cyanosis of the extremities, particularly of the soles of the feet and palms of the hands, is a normal finding and typically caused by the infant being cold. Neonatal pallor warrants a prompt assessment for potential sepsis or anaemia. Neonatal jaundice is a common finding, particularly in breastfed infants. Jaundice which appears before 24 hours of age is pathological until proven otherwise, and appropriate investigations for immune-related haemolysis (Rhesus or ABO incompatibility), congenital infection, sepsis, and biliary obstruction should follow. A plethoric, or ‘ruddy,’ appearance to the baby is usually related to polycythaemia. Polycythaemia is defined as a central haematocrit > 65% and is commonly associated with maternal gestational diabetes mellitus, trisomy 21 and recipients of twin-to-twin transfusion. General inspection of the baby’s respiratory system includes observation for signs of respiratory distress, including tachypnoea (respiratory rate over 60 breaths per minute), nasal flaring, intercostal, and subcostal recession. Grunting, defined as forced expiration against a partially closed glottis, is a significant sign of respiratory distress as the baby is attempting to generate their own positive airway pressure. The level of consciousness of the baby should be automatically assessed during the general inspection. There are 5 levels of consciousness (LOC) that a newborn may assume; alert, hyperalert, lethargic, stuporous, and comatose. An ‘alert’ baby is a normal baby; the baby will assume a semi-flexed posture, move their limbs symmetrically and spontaneously, have spontaneous eye-opening, interact with their environment, and be consolable. A ‘hyperalert’ baby is baby hyperalert to environmental stimuli, often inconsolable, requires frequent soothing, has exaggerated primitive reflexes and feeding difficulties. A baby exhibiting signs of hyperalertness may potentially be withdrawing from maternal medication, prescribed or illicit, or developing central nervous system pathology such as meningitis or encephalitis. The decreased LOC states include lethargy, stuporous and comatose and always require immediate attention. A lethargic baby will be active on handling but will be quiet and non-responsive when not stimulated. A stuporous baby will only respond to noxious stimuli, such as firm sternal rub, while a comatose baby will not respond to noxious stimuli at all. The differential diagnosis for decreased LOC of the newborn is large and includes sepsis, hypoxic ischaemic encephalopathy, meningitis, encephalitis, hypoglycaemia, and inborn errors of metabolism.
*** Enter website link below to view exam details and associated pictures
- Head Circumference (HC)
- Eye Examination
- Cardiovascular System & Palpation of the Femoral Pulses
- Palpation of the liver
- Palpitation of testes
- Examination of the Hips
- Newborn Screening Assessments
Useful Advice for New Parents: The newborn physical examination is an excellent opportunity to form a good rapport with parents, provide advice for newborn care, answer questions, and provide reassurance. Breastfeeding should be encouraged, and the benefits of breastmilk promoted to parents; breastfeeding encourages maternal bonding with baby, provides natural and complete nutrition, prevents infection via maternal immunoglobulin and protects against future obesity. (13) The importance of appropriate sleeping practices should be emphasised. The ‘Back to Sleep’ campaign was launched in 1994, and since then, a reduction in over 50% of sudden infant death syndrome (SIDS) cases in the United States has been achieved. (14) As such, all infants should be placed on their backs when going to sleep, with their feet at the bottom of the cot, one breathable blanket to cover them and no pillows or toys in the cot around the baby. Smoking in the household should be discussed as a significant risk factor for SIDS and parents directed to appropriate supports for smoking cessation. Many neonatal units and maternity hospitals implement an infant ‘car seat challenge’ prior to discharge home to assess safe positioning of the infant in the car seat. This is especially relevant for infants born prematurely, who may experience apnoea, bradycardia, and oxygen desaturations if malpositioned in a car seat. (15) The newborn examination may also provide time to mention the value of immunizations, inform parents of the immunization schedule, and correct misconceptions they may have regarding vaccination. In conclusion, a comprehensive physical examination of the newborn is essential. Appropriate training in neonatal physical examination technique for medical students and physicians working outside of neonatology is vital to ensure that newborns interacting with such services are examined thoroughly, and any pathology present promptly identified. We have outlined some of the more challenging aspects of the newborn physical exam, which are often performed incorrectly. We hope these tips may ameliorate such difficulties or errors in technique and be helpful for the nonneonatologist reviewing a newborn infant.
References: 1. Teljeur C, Tyrrell E, Kelly A, O’Dowd T, Thomas S. Getting a handle on the general practice workforce in Ireland. Irish journal of medical science. 2014;183(2):207-213. 2. Devakumar D, Bamford A, Ferreira MU, et al. Infectious causes of microcephaly: epidemiology, pathogenesis, diagnosis, and management. The Lancet Infectious diseases. 2018;18(1):e1Readers
2019 Residents Lifestyle & Happiness Report
Check out the data (residency rewards, challenges, bullying, social life, stress, etc.)
Medscape Physician Lifestyle & Happiness Report 2019
Keith L. Martin | January 9, 2019 | Specialty comparisons, Happiness, relationships, vacations, exercise, etc.
Perinatal palliative care: Giving parents support when a pregnancy goes wrong-
Posted on 23 July 2019 – Interview with Dr Fauzia Paize
Perinatal palliative care (PPC) is a fairly new subspecialty within palliative care. What are the main ideas behind this new concept?
Dr Paize: Healthcare professionals working in antenatal and neonatal services are accustomed to providing babies and families with sophisticated expert care using high levels of technical skills, communication and knowledge. However, there is a growing need for them to provide a palliative care approach throughout the pathways, which means a shifting of emphasis, ensuring that the baby continues to receive intensive care but reducing the level of highly technical care. This is where perinatal palliative care comes into play: It is all about maximising your time as a family. It helps families to spend time with their baby, improve bonding and build memories, in a more home-like environment and with as little technology dependent care as possible. There is more emphasis on family-centred care to enable parents to create positive memories, for example by having time to hold their baby.
What are the specific questions and challenges when caring for dying babies before, during, and after birth, compared to caring for dying children and adults
Dr Paize: First of all, although national frameworks and clinical pathways for palliative care after birth have been established, we still do not have a unified pathway guiding care for women and families. The uncertainty of prenatal diagnosis is another significant challenge. If a problem is detected before birth, there is the potential for discordance between those findings and the possibility of the affected organs being able to sustain life after birth. This leads to the need for parallel planning – hoping for the best whilst planning for the worst. Another difference to older dying children is that babies can deteriorate and die with great speed, much faster than older children or adults. This also highlights the importance of parallel planning for every eventuality so as to introduce effective and planned palliative care support for these babies and their families. The time parents can spend with their baby alive can be very short and therefore very precious – there is only one chance to get it right, so it is vital to create opportunities for parents to make and share memories of their baby.
In the neonatal setting, mothers are sometimes not fit enough to be transferred to a neonatal unit where care for the baby is to be taken place. Some women, such as those with pre-eclampsia, may be seriously ill themselves. In multiple births, there may be one or more sick babies to take care for, alongside babies who do not have a life-threatening condition. There may be queries about organ donation from the sick baby, something neonatology and the blood transfusion service are still not fully prepared for although they have happened successfully. A baby may die in utero, triggering off bereavement during an ongoing pregnancy.
Another point is, that there are different and often multiple teams and services involved in this particular area of healthcare. There are obstetricians, midwives, neonatal nurses, neonatologists, fetal medicine specialists, sometimes based in different hospitals, so there is a need for high levels of efficient, compassionate, accurate communication to prevent that parents need to repeat their story over and over again. When a newborn baby dies, the family’s grief can be lonely, with few people having met their baby that died very soon after birth. There can be a lack of appreciation of what has happened from their usual support circles. Only few people can understand what they have gone through or know what to say to provide comfort. Finally, we must not forget those pregnancies that are terminated because of significant physical problems of the baby. Those babies are often born alive and may have physical supportive needs if distressed, but families need emotional support following the loss of their baby.
In your view, what are the largest barriers for PPC and what are the best strategies to overcome these barriers?
Dr Paize: There are a lot of barriers to perinatal palliative care. We are a generation that thinks that a positive pregnancy test always leads to a baby and we do not expect babies to die. There is societal expectation that we always take our babies home, we go to a 12 week scan to see when our baby is due and we go to our 20 week scan to find out if we are having a boy or a girl. We do not expect that something could go wrong in pregnancy that can potentially lead us to not take our babies home or have a baby that has significant problems in the long term.
We as healthcare professionals see death as a failure, as we think our job is to diagnose illnesses, treat them and make people healthy. If this is something that we cannot do, we find that very difficult in our sphere of work. We also have to deal with a lack of scientific evidence compared to other areas of intensive care within neonatology. We need more adequate palliative care training and experience for providers, we also need more multidisciplinary trainings so that fetal medicine, midwives and neonatal practitioners can sit down and train together.
As a society, we should promote more discussions about the reality that babies can be very sick and can die. Model programs that show excellent standards of providing perinatal palliative care should be awarded and seen as lighthouse programmes for people to follow.
What is most important when communicating with affected parents?
Dr Paize: Families should be provided with value-neutral information about all options, including termination of pregnancy, continuation with palliative care or continuation of pregnancy with an active postnatal care plan. It is important to discuss openly parents’ priorities, hopes and fears, in order to facilitate shared decision making. It is also vital to talk about the most common eventualities in the process of pregnancy and delivery in general, and the uncertainties of each individual case. Establishing and maintaining trust is crucial in this evolving relationship, so continuity of care with the same clinicians is advised. Items that should be covered include deciding the mode and timing of delivery, monitoring during labour, resuscitation after birth, symptom management and the possibility of transitioning to a community setting if the baby shows signs that they may survive for longer than expected. Families may ask about organ or tissue donation and this should be supported if appropriate with involvement of the local specialist nurses for organ donation.
It is, however, important to know that decisions do not always need to be made at the time of the first meeting, as there is a lot of information to take in when a pregnancy has changed course. Plans can evolve over several meetings and should be formalised in a written advanced antenatal palliative care and birth plan. This plan should ideally be kept in the maternal hand held notes to make sure that information can be shared between fetal medicine, neonatal teams, children’s hospices, palliative care teams, referring centre labour ward and, community midwifery and general practice teams. It is a difficult but very important task to maintain high standards in communication and documentation with all parties at all time.
Families have to make tough ethical decisions sometimes, for example if they need to decide whether to withdraw a life-sustaining treatment. What is your approach to support the families in these extremely difficult moments?
Dr Paize: Families need emotional, spiritual and religious support in these situations, and we need to be mindful of the fact that they are going through something extremely difficult. We need to empower them to use their own support networks and provide support as long as we can. In difficult ethical decisions, it is important that we are honest and open with families, give them written information, connect them with people who have been in a similar situation, and always have our doors open. They should get all the support they need and we need to let them know that they are not alone in these difficult times.
The large majority of neonatal deaths still occur in the hospitals, how can we give parents the opportunity to be with their dying child, in the clinics or at home?
Dr Paize: It is vital to understand the local resources available to families. This will vary and it will be important to only offer what can be delivered in the local area, for example, what local hospice or palliative care teams are and are not able to offer. We need to be aware that taking a baby home with a life-limiting diagnosis, complex medical needs and equipment, can be a truly daunting task. Comprehensive discharge planning is crucial to support a seamless transition to home or to another place of care. The mother’s own care needs will need to be considered, but also the family will need to be prepared for the arrival of the sick sibling. Some hospitals can provide an outreach service which improves continuity of care between settings.
What role can children’s hospices play in this context?
Dr Paize: Children’s hospices working in partnership with local neonatal teams, fetal medicine units, community midwives and palliative care teams have been a revelation in the last 5 years of neonatal palliative care. In this partnership, they can emotionally support families throughout pregnancy and help in the transition to the hospice immediately after discharge from hospital. Families can visit the hospice before their baby is born to decide if this is the place they would like to spend time with their baby and extended family.
Children’s hospices can offer a home away from home setting, allowing families as much privacy or support as possible and providing family-led palliative and end-of-life care to babies with complex needs. They allow some normality in a supported environment, such as being able to sleep in the same room, being able to take the baby into the garden, pushing it in a pram, and spending time as a family. It allows parents to balance their expectations of parenthood and independence with the specialist palliative care. Children’s hospices also offer household services, so families can spend more time with their baby. They also are experienced in memory making, symptom control, supporting families at home as a step down from hospital for those babies that may not die imminently. Hospices also aid in funeral planning, registering the birth and death of their child, and give bereavement support to the extended family including siblings and grandparents.
How can healthcare professionals who work in PPC be compassionate partners for the families and still not be overwhelmed psychologically in these often devastating situations?
Dr Paize: Healthcare professionals sometimes find it difficult to ‘let go’ of the baby and family and may themselves need support. Following the baby’s death, staff may find it helpful to use a range of support methods such as debriefs or reflective practice. This can help to reduce their levels of stress, risk of burnout, compassion fatigue and increase their job satisfaction. It can be helpful to provide psychological support for palliative care staff in neonatal units, e.g. by a children’s palliative care team.
Dr Fauzia Paize is a Consultant Neonatologist at the Liverpool Women’s Hospital NHS Foundation Trust in the UK. She is also the mother of Jacob who was stillborn at 23 weeks. Having felt the severe pain of baby loss she is committed to improving perinatal palliative, end-of-life and bereavement care. She has implemented a North West strategy to integrate children’s hospices with neonatal units to ensure smoother patient and family journeys. She was the consultant neonatologist for the NICE guideline “End-of-life care for infants, children and young people”, the “Perinatal Pathway for Babies with Palliative Care Needs – Together for Short Lives” and she is one of the authors on the 2016 APPM Master Formulary. She is passionate about supporting parents and staff through the traumas of neonatal intensive care and has led several initiatives in neonatal units trying to make the journey as tolerable as possible for all involved.
Date: August 26, 2019 Source: Boston University School of Medicine
Summary: After decades of research, a new study links optimism and prolonged life. Researchers have found that individuals with greater optimism are more likely to live longer and to achieve ‘exceptional longevity,’ that is, living to age 85 or older.
Researchers from Boston University School of Medicine (BUSM), National Center for PTSD at VA Boston Healthcare System and Harvard T.H. Chan School of Public Health, have found that individuals with greater optimism are more likely to live longer and to achieve “exceptional longevity,” that is, living to age 85 or older.
Optimism refers to a general expectation that good things will happen, or believing that the future will be favorable because we can control important outcomes. Whereas research has identified many risk factors that increase the likelihood of diseases and premature death, much less is known about positive psychosocial factors that can promote healthy aging.
The study was based on 69,744 women and 1,429 men. Both groups completed survey measures to assess their level of optimism, as well as their overall health and health habits such as diet, smoking and alcohol use. Women were followed for 10 years, while the men were followed for 30 years. When individuals were compared based on their initial levels of optimism, the researchers found that the most optimistic men and women demonstrated, on average, an 11 to 15 percent longer lifespan, and had 50-70 percent greater odds of reaching 85 years old compared to the least optimistic groups. The results were maintained after accounting for age, demographic factors such as educational attainment, chronic diseases, depression and also health behaviors, such as alcohol use, exercise, diet and primary care visits.
“While research has identified many risk factors for diseases and premature death, we know relatively less about positive psychosocial factors that can promote healthy aging,” explained corresponding author Lewina Lee, PhD, clinical research psychologist at the National Center for PTSD at VA Boston and assistant professor of psychiatry at BUSM. “This study has strong public health relevance because it suggests that optimism is one such psychosocial asset that has the potential to extend the human lifespan. Interestingly, optimism may be modifiable using relatively simple techniques or therapies.”
It is unclear how exactly optimism helps people attain longer life. “Other research suggests that more optimistic people may be able to regulate emotions and behavior as well as bounce back from stressors and difficulties more effectively,” said senior author Laura Kubzansky, PhD, MPH, Lee Kum Kee Professor of Social and Behavioral Sciences and co-director, Lee Kum Sheung Center for Health and Happiness at the Harvard T.H. Chan School of Public Health. The researchers also consider that more optimistic people tend to have healthier habits, such as being more likely to engage in more exercise and less likely to smoke, which could extend lifespan. “Research on the reason why optimism matters so much remains to be done, but the link between optimism and health is becoming more evident,” noted senior author Fran Grodstein, ScD, professor of epidemiology at the Harvard T.H. Chan School of Public Health and professor of medicine at the Channing Division of Network Medicine at Brigham and Women’s Hospital and Harvard Medical School.
“Our study contributes to scientific knowledge on health assets that may protect against mortality risk and promote resilient aging. We hope that our findings will inspire further research on interventions to enhance positive health assets that may improve the public’s health with aging,” added Lee.
Story Source: Materials provided by Boston University School of Medicine.
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Alina Alexeeva Published on Dec 3, 2017 Осень 2017.
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