I do not know what it’s like to lose a child and I hope and
pray I never do. All my children, and now grandchildren, are healthy and
strong. My family is truly blessed and I try not to forget that fact.
There are expectant parents who face the terrible reality that their
baby will be born with a terminal condition. They are usually told after a
prenatal test and are given the choice of continuing the pregnancy or aborting their
baby. Parents are often pressured to
make their decision quickly, particularly later in pregnancy, given the
complications that can arise. The problem is that they are overwhelmed by the
devastating news; they are hardly in a position to make such a heavy decision.
According to Bill Saunders of Americans United for Life, only twenty percent of
couples will bring their pregnancy to term.[1] Saunders also reveals that parents
who chose abortion have deep regrets. Perinatal hospice can provide options
that comfort, nurture and support for parents and also honours the humanity of
their babies.
Perinatal hospice provides a continuum of medical, emotional
and spiritual support and nurture for the family and their terminally ill baby.
Working in concert with the obstetrical team, the perinatal hospice team provides
support to the family -- in as much as they choose. It is important that perinatal hospice be Christian to help ensure the sanctity of all lives are upheld. (A secular perinatal hospice can't be trusted to understand the innate value and sanctity of the terminally ill unborn child.)[2] This may involve helping prepare for the baby’s arrival and death, answering questions and concerns, or helping to create memories that will last and comfort the family in their loss. Perhaps it might include ultrasound images during the pregnancy, video recordings, making cast impressions of the baby’s hands and feet or taking snippets of hair for a memory box or scrapbook, and involving siblings and grandparents. Perinatal hospice can empower grieving parents to prepare for their baby’s birth and death. They may have months or only days to prepare. The goal is to support the parents to make the time they have uniquely theirs’.
This is a dramatic contrast to the sudden separation that
occurs when the pregnancy is terminated by abortion. In areas where perinatal hospice programs are
available, up to eighty percent of parents facing a fatal anomaly of their
unborn child will choose the perinatal option.[3]
Christian perinatal hospice options should be available in communities. Wouldn't it be a wonderful witness of Christ’s love for hurting parents? The following link is to a beautiful and sensitive video highlighting perinatal hospice. Is it an idea that's appropriate for your community?
http://www.youtube.com/watch?v=tY7mq1g9pGk
MDP
NOTES
[1] See "Give Parents Perinatal Hospice Option Instead of Abortion" by Bill Saunders | Washington, DC | LifeNews.com | 1/4/11. http://www.lifenews.com/2011/01/04/give-parents-perinatal-hospice-option-instead-of-abortion/
[2] Regarding secular hospice, Founder and President of the Hospice Patients Alliance, Ron Panzer, voiced similar concerns about secular perinatal hospice. He observed "Giving birth to the baby and seeing how the baby does while giving all needed treatments and nourishment would be the expected choice for those who value the life of the baby. However, if one gives birth to the baby and then withholds food and fluids, and most likely terminally-sedate the baby, one is imposing death, just the same as is done with some elderly and severely disabled in hospice."
Panzer continued, "I am certain that the ability to use hospice for the newborn will be misused to end the lives of some babies who are not truly "terminal," but have congenital defects or chromosomal abnormalities/differences in the manner of pure eugenics. What is to stop "perinatal hospice" from being used to end the lives of say, Downs syndrome babies? The public (the parents) may "feel better" because they get to hold their baby for a while and love it, while its life is being ended "peacefully" as it sleeps to death. What's to stop terminal sedation from being applied here again? I have grave reservations about this because I know the hospice industry and how they think. " This is why perinatal hospice in the hands of secular bioethicists would prove disastrous. What's to stop the sorts of practices outlined by Mr. Panzer is to have an orthodox Christian foundation that is loyal to historic Church teaching and morality.
[3] M. D’Almeida et al., Perinatal Hospice: Family-Centered Care of the Fetus with a Lethal Condition, J. AMER. PHYSICIANS & SURGEONS 11:52 (2006); B.C. Calhoun & N. Hoeldtke, The Perinatal Hospice: Ploughing the Field of Natal Sorrow (2005).
http://www.youtube.com/watch?v=tY7mq1g9pGk
MDP
NOTES
[1] See "Give Parents Perinatal Hospice Option Instead of Abortion" by Bill Saunders | Washington, DC | LifeNews.com | 1/4/11. http://www.lifenews.com/2011/01/04/give-parents-perinatal-hospice-option-instead-of-abortion/
[2] Regarding secular hospice, Founder and President of the Hospice Patients Alliance, Ron Panzer, voiced similar concerns about secular perinatal hospice. He observed "Giving birth to the baby and seeing how the baby does while giving all needed treatments and nourishment would be the expected choice for those who value the life of the baby. However, if one gives birth to the baby and then withholds food and fluids, and most likely terminally-sedate the baby, one is imposing death, just the same as is done with some elderly and severely disabled in hospice."
Panzer continued, "I am certain that the ability to use hospice for the newborn will be misused to end the lives of some babies who are not truly "terminal," but have congenital defects or chromosomal abnormalities/differences in the manner of pure eugenics. What is to stop "perinatal hospice" from being used to end the lives of say, Downs syndrome babies? The public (the parents) may "feel better" because they get to hold their baby for a while and love it, while its life is being ended "peacefully" as it sleeps to death. What's to stop terminal sedation from being applied here again? I have grave reservations about this because I know the hospice industry and how they think. " This is why perinatal hospice in the hands of secular bioethicists would prove disastrous. What's to stop the sorts of practices outlined by Mr. Panzer is to have an orthodox Christian foundation that is loyal to historic Church teaching and morality.
[3] M. D’Almeida et al., Perinatal Hospice: Family-Centered Care of the Fetus with a Lethal Condition, J. AMER. PHYSICIANS & SURGEONS 11:52 (2006); B.C. Calhoun & N. Hoeldtke, The Perinatal Hospice: Ploughing the Field of Natal Sorrow (2005).
12 comments:
As a Catholic nurse who runs a Perinatal Hospice program in a secular setting, I would like to speak to some of these concerns.
I have worked in Neonatal ICU for many years in secular settings all over the US. Neonatology practitioners give every baby every chance to survive and thrive. The fear-mongering I read of in the Catholic media giving dire warnings of imperfect babies being marginalized and euthanized warns of something that I have NEVER seen.
Please remember that even in secular settings, God lead Catholic and other Christian and other faith-filled people to serve in Medicine and Nursing and we take our vocations seriously. These fear-filled gloom-and-doom warnings are unnecessarily accusatory and disrespectful against the very people who have committed thier professional lives to caring for sick babies.
Perinatal euthanasia has existed in the form of liberal abortion practices long before any of us designed Perinatal Hospice programs to give families another option. We have worked very hard to create this other option...if we were simply trying to whitewash euthanasia & abortion, I think we would have found an easier way to do so and again the dire warnings that were a bunch of eugenicists bears false witness against us. Part of Perinatal Hospice is to assess the baby for how their condition actually manifests itself at delivery vs what was expected and aggressive neonatology care may be instituted if the parents and Neonatologist decide to proceed down that path. We create a feeding plan including consultations with Lactation Consultants to make sure that the parents have various feeding options available to them. We do not starve and terminally sedate babies.
There will be plenty of areas without a "Christian" hospital where a Perinatal Hospice program may very well be started in a secular hospital. I would encourage you to learn about it and the services they provide before you publicly speak out against them. Again as a Catholic working in a secular setting, I regularly feel "thrown under a bus" by my faith brethren who choose to assume the worst about me and my peers without any cause. Mr Panzers statement that I cannot give ethically responsible perinatal palliative care in a secular setting is irresponsible and unnecessarily accusatory.
I think that much of the hysteria around this topic is the fact that most people know so little about the disease processes that cause newborns to die or the pathophysiology of previability. I percieve that too many prolifers think that if we loved babies enough and cared well enough for them that none of them would die. I love babies, I have spent a lifetime caring for them, but the start reality is that 1% of babies who reach 20 weeks gestation in pregnancies that are not being aborted will suffer death prior to their 28th day of life even with the most aggressive care available on planet earth. That is a sad fact, but too often there is a "shoot the messenger" mentality of blaming Medicine and Nursing for not being able to save every one. It is hard to face that death can't be avoided in these cases...how much easier to blame someone than to acknowledge the tragedy of the deaths. Its time to not only support parents experiencing these deaths but to appreciate the dedicated Medical an Nursing professionals who put themselves on the line every day to fight for the lives of these tiny treasures...we grieve too.
Thank you very much for your comments Tammy. Unfortunately I have witnessed the very thing you say you have never seen with imperfect newborns being killed by withholding nutrition and hydration. My 11 years on the Ethics Committee at the University of Alberta Hospital (1993-2004)opened my exposure to this practice. My dim view of secular bioethics was shaped, in large part, by that decade.
You said, "I percieve that too many prolifers think that if we loved babies enough and cared well enough for them that none of them would die." Your perception is wrong. I was speaking about care for terminally ill newborns and their families. We know that death is certain. At no point did the post falsely assert that terminally ill infants can be saved by love, only that we give love and nurture to the dying baby and the same to the parents. Christ-centered love surpasses anything secular. That has been my experience.
Mark
I had left 2 comments this morning, but I wrote them in haste and would like to restate some of my thoughts with more time to respond.
I cant speak for Canada as I have never worked there, but I will believe what you say is true. Having worked in 9 NICUs all over the US over a 25 year period, I still never witnessed a single starvation or anything I would consider euthanasia. In the US, I have seen much more frequently a baby reach the end of thier natural life but aggressive therapies are sustained while the case is discussed and debated. To an extreme degree, we tent to err on the side of caution.
With this in mind, Mr Panzers dire warnings that Perinatal Palliative Care given in secular settings will degrade into euthanasia is profoundly inappropriate and I find it professionally insulting.
Non religiously affiliated hospitals hire people of wide backgrounds and we bring something special to our care setting. I have met plenty of women/couples who were willing to look at Perinatal Hospice Care because they knew they would not be subject to heavyhanded hard-sell tactics that included religious beliefs that they might not share. We can make a respectful offer of care and they may take us up on it and have a supported, loving experience with their baby. I can also interact with my Christian patients as I speak that language and share those beliefs.
Part of Perinatal Palliative care is assessing each baby at birth to see how thier condition actually manifested itself vs what we expected. Feeding plans would have already been discussed and if the baby survived past the initial delivery, then various methods of feeding are usually tried. The disease processes that cause newborn death are not often pain inducing, so even though we need to be prepared to admin analgesia, it is most often not needed - so your dire warnings of sedation and starvation are simply not part of the processes that families and providers use in caring for the babies.
Additionally, I will admit that YOU did not insinuate that babies would not die if we loved them /cared for them enough. I see you however as a serious minority in this...so much of the conservative media treats this subject as I stated earlier.
I have very often seen writers who to refuse to acknowledge that:
1. there is a limit to how early babies can be saved. A widely distributed story stating that 21 weekers could survive premature birth went wildly through the conserative media...what a horrible disservice to families
2 that some deaths (regardless of the level of care given) are inevitable
3 that severe prenatal diagnosis are most likely real vs some random error (human error is obviously always possible, but this is taken as an assumption quite often with caregivers villified).
As for Christ centered love surpassing anything secular...my Christianity goes deep into the core of me. Even if I work with a nonChristian family and dont speak Christian words, my passion and kindness and devotion is fueled by my faith...I use my hands to show Christ's love in how I care for them and thier dying infant. For families who share my faith, I can add prayers and familiar words to my service I give them. For you to infer that my commitment is suspect and my motives are unreliable because my employer is secular when no wrong has been done is simply wrong.
Thank you for raising this very important topic.
I suspect that most providers of perinatal hospice have the best of intentions and they put their heart and soul into their work. The service they provide is critically important to parents who have a prenatal diagnosis. Depending on the condition of the unborn, the mother might have to simultaneously prepare for the imminent death in utero of her child (a very real risk,) death during delivery or soon after, or life of several years with a child who might be severely disabled and/or medically complex. The support and guidance of a specialist is sorely needed and much appreciated.
I believe that the heart of the problem relates to the presumed futility of certain conditions, especially trisomy 13/18.
In their paper Lethal Language, Lethal Decisions [Koogler 2003], physicians who are leaders in ethics challenged the accepted belief that children with trisomy 13 and 18 were "lethal", especially given advances in neonatology that could treat various issues that could lead to death. They asserted that doctors might be counseling parents in a way that would cause them to believe their child's condition was "incompatible with life" when in fact doctors were imposing a quality of life judgement on the child rather than letting the parents make informed decisions.
The initiation of parent support groups 10 years ago allowed parents to gain insight into the lives of living children and their families and they are no longer dependent on the doctors as the only source of information. It is not rare that a parent joins a support group and informs the others, "I was told that NO child survives and yet I see that there are hundreds in this group." For the most part, the children are severely disabled, but they are universally happy and they enrich the lives of their families.
Population-based statistics report one year survival rates of between 5-10% for trisomy 13/18 but these are very suspect. Little is known from these studies about what treatments were provided to the children, if any. Without a doubt, some children are severely afflicted and best treated with comfort care. However, a Japanese study [Kaneko, 2009] revealed that when treatment (including surgery) was provided to children with trisomy 18 when there is a 'reasonable' chance of success, the one year survival increased to 44%!
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Continued from above...
It would be fabulous if those who offer perinatal hospice services would celebrate the hope for longevity with parents who desire for their children to live and are accepting of their limitations yet this does not seem to be universally the case. I have heard some hospice providers declare that they "loathe miracle stories." I know of some physicians involved in this movement who believe that these children "die of the trisomy." This understanding is no longer acceptable, given what we now know about trisomy 13/18.
Likely the most convincing evidence that parents who want to give their children a chance at life should be cautious of providers of perinatal hospice is an article that was published recently by leaders in the movement. [Merritt 2012]
The authors concede that interventions can in fact prolong the lives of some of the children with trisomy 13 and 18. However, they write that they are children who are frequently non-ambulatory and non-verbal. These LEADERS impose their own judgement on the quality of the lives of these children and deem them to be unworthy of life. They suggest that parents should be counseled to accept comfort care or to go elsewhere.
One more thing to consider is that when a child with trisomy 13 or 18 has only comfort care, there can be substantial cost savings. Anyone who thinks that money has nothing to do with these matters should review an article [Courtwright 2010] from UNC which reveals that they system is most certainly counting their dollars and cents when it comes to children with these conditions.
I believe that any parents who has received a diagnosis of trisomy 13 or 18 for their unborn must be very cautious to ensure that their provider of perinatal hospice is aware of recent medical literature, including the American paper that reveals a 91% success rate for cardiac surgery [Graham 2004]. Unless parents have made the decision to let their child die due to complex anomalies discovered via ultrasound or due to an inability or lack of desire to care for a child with severe disabilities, they should ensure that the hospice provider has a history of advocating for life when newborns have a reasonable chance to prolong life. Providers who claim all the children are "lethal" or "incompatible with life" and that the few survivors they might find on the internet are "miracles" are providers whose service will be restricted to providing a nice death for the children in their care.
My son was diagnosed with what doctors consider a terminal syndrome called Trisomy 13. His geneticist said that there was little we could do, that he would likely die in the next month or two. My boy is now 8 months old and going strong... there's no indication that he is going anywhere, despite what the experts say. We decided not to take the screening test during the pregnancy, just out of principle, yet never expected that it would happen. We'd never heard of Trisomy 13 and I often wonder what would have happened if we had agreed to the screening test. We could have lost our precious son through bad advice and stereotyping.
Joe,
Your comment reinforces the need to have Perinatal Hospice. Giving birth to a child allows them to "tell their story" as I often put it and noone would have to suffer a needless death from "bad advise and stereotyping". One of my patients was so weak and frail noone expected her to leave the delivery room. Her moms care allowed her to live 10 months until the unchangeable aspects of her disease process overtook her.
WHAT? ! my patient lived 10 months ? We must have forgotten to starve and terminally sedate her. I guess we got too busy helping her parents parent her.
Joe - Thank you for your comment. Personal perspectives trump theoretical discissions and I am grateful for your feedback.
Mark
I have visited some hospices and nj nursing homes and I have to say that their workers are really caring. It's a safe place where we could have our loved ones taking care of.
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