The Importance of Christian Perinatal Hospice
©Heidi Bratton Photography 2011
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 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.
When the baby arrives, perinatal hospice ensures he/she is treated with love and respect by health care professionals the parents have come to know and trust. Perhaps a professional photographer of parents’ choice will be present to capture images and memories to be treasured. A priest may be on hand to baptize the baby. Perinatal hospice helps ensure interdisciplinary plans are in place to ensure support for the family.
Time shared by the family and baby is respected. Even when the baby dies, nurture for the parents does not stop because the family has had the support to say goodbyes to their baby. Any fears parents have of abandonment in care after the baby passes are removed by perinatal care that encourages healing.
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 all communities. Wouldn’t it be a wonderful witness of Christ’s love for hurting parents?
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).
So how would you define “Christian” Perinatal Hospice? Most hospitals are staffed by people with a wide range of beliefs…would your definition beic based on Hospital Affiliation? Faith of the Attending Physician? Faith of the bedside staff? Christian influence on the Ethics Committee? Who would decide if a program were “Christian enough” to stand muster?
Would you advise some sort of certifying body to approve “Christian” perinatal programs? I get the basic premise behind wanting a Christian influence in this care but the idea seems terribly unworkable…who decides if a program is “Christian enough” and what happens to those who need care?
I was hoping that the above questions might spark a conversation with the author to assist him in seeing that it would be impossible to only have “Christian” Perinatal Hospice programs as medical care is given in hospitals (some secular, some not) by the wide range of people who enter that specialty.
As a Christian myself, I experience how my Faith fuels my commitment and devotion to care properly for my patients, but there is no way to isolate this care so that only people with specific faith backgrounds serve in it.
This sentence to me is especially inaccurate and inflammatory: “A secular perinatal hospice can’t be trusted to understand the innate value and sanctity of the terminally ill unborn child.” A secular Perinatal Hospice program is made up of people many of whom may be very faithful people. Professionals dont go into this to have access to the vulnurable to do them in.
I started our program in a secular hospital because it was the only hospital in our region. Since the ineption of our program, I have networked widely with other programs and collaborated with colleagues to do a “State of the Art” survey of the majority of programs in North America. We did this in preparation for a class at an international conference where people from all over the US & numerous countries came to discuss this topic. In every program that I am aware of, organized, anticipated care with parents increased the voice that parents had in deciding the plan for their child.
This video is mine, that is me caring for that dear one. I made it on my own time with photos that the parents trusted me with. It has been seen in 77 countries including places where Perinatal Hospice probably hadnt ever been spoken of. It teaches and every case I do teaches me and everyone in the room.
I have heard horror stories and had to face down MDs who were so “old school” about these babies and needed to see that their lives had great value and they could sometimes eat and breathe and exceed expectations, but to do that we had to have them there, learning. The babies are the teachers, not so much me, but the naysaying doctors have to be there to learn these lessons.
The fact that someone would propose that my program (and the teaching that has come out of it) wasnt trustworthy to value the lives and souls of the wee ones in our care is so profoundly flawed I can scarcely find the words. If I hadnt started this where I was, what would have otherwise been available? If God so small that He cant do amazing work using goofy flawed people like me in regular places?
I respect the baseline idea of the above author wanting to insure that tiny sick unborn babies get loving, respectful, thorough care and I agree with him. However, limiting the programs available to parents is not how to achieve this goal. The first thing we all need to do is to be aware that perinatal palliative care support exists in the first place.
If you or a friend or relative gets a devestating diagnosis, I hope there is a program local to you. If not, there is still help. There are volunteer faith based support networks at one ond of the care continuum and well integrated Neonatology/Perinatology focused in-hospital progams at the other and they are all important. You can fine out what is available to you at perinatalhospice.org
Perinatal Loss Nurse, I recognize and understand your concerns with this article.
In no way would I want to have the work you do discredited and that is not our intent with publishing this, nor, I am sure, was that the intent of the author. The author is responing to Panzer’s warning that secular perinatal hospice will be used to terminate some handicapped babies. This is an article about the future, not the present.
The solution Panzer and Pickup are recommending is for hospices to be established that are distincly Christian.
Now, if we look at this in the light of how hospice care for the aged and ill adult has evolved, we can understand that theirs is a very legitimate concern. You are taking it personally, but this is not directed to you, nor is it about your present or past work, which is amazing!
This is about the anticipation of where secular medical “ethics’ is heading — at both ends of life — and how we Christians might anticipate and cope with it.
Establishing Christian institutions is nothing new. It is done all the time, so the question of how such a thing could be done is a non-issue really when there are already thousands of Christian and specifically Catholic hospitals.
I appreciate your response, and fully understand that it is reasonable to voice concerns and caution about how care is given to this very vulnerable population, but when you publish a statement like “A secular perinatal hospice can’t be trusted to understand the innate value and sanctity of the terminally ill unborn child.” that is not a general voiced concern, that is a specific accusation.
I am Catholic but the program I started is in a secular hospital and this article said I am “not to be trusted”; not “maybe” or “possibly” or “perhaps” or “caution needs to be taken”, no it says I am not to be trusted. I simply don’t see the wiggle-room. You say you are concerned for the future…that is fine; Im concerned for today…if Catholic parents read this TODAY…what have you told them?
Again, you have every right to urge caution and care, but that is NOT what this article says…it says that people will starve and “terminally sedate” babies who aren’t really terminally ill. That is a painfully clear statement.
Am I taking this personally ? Yes, there are only a few hundred people in the country who do this and I’m one of them, you saw my face, you saw my hands cradle this baby, wash & dress her…bring the Priest into the OR to Baptize her…do you know how complicated it is to get a Priest in an OR with a photographer to get a picture?
There are a few people in this country who saw the need and took the steps to provide this care …we fought systems and challenged the norm and some of us suffered mightily being seen as religious extremists by our peers and when we have worked years and made pivotal changes, we are met with our Faith brethren telling the world that we will kill their babies.
“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” ”
“Certain” dang…that is pretty specific.
Let me turn this around and ask you, Perinatal Loss Nurse, given the kinds of things that “ethisists” are currently consdiering/recommending as ethical AND given the history of hospice care for the aged and ill adult population which has been turned in exactly that direction — i.e. into facilitating termination as opposed to merely caring for the dying and assisting the family — why are you NOT certain that this corruption of the aims of perinatal hospice will occur?
The health care rationing of Obama care, aboiut which the administration is getting more and more public gives even more urgency to these warnings.
What you do is wonderful and if you don’t recognize that forces are in operation right now to turn it into something else, I am truly sorry. But either we roll back the entire anti-life agenda of this government or it is certain.
“Let me turn this around and ask you”
Really? I am actually eager to continue this discussion because I think its helpful information to get out there, but I really thought you guys would be gracious enough to admit that what was originally published was excessive. I really thought better of you.
Whether the issue is Perinatal Palliative Care or adult care or whatever, I implore those who are passionate about life to never fall into the error of accusing the innocent. I have been a nurse for 26 years and worked in Peds ICU, Neonatal ICU and Adult Hospice and I’ve never participated in or even witnessed “facilitating termination” of the dying. We all need to be vigilant and like you I have heard stories of bad things happening in the adult world, but it is simply wrong to use that as a reason to accuse people and question the decency of all healthcare workers.
“given the kinds of things that “ethisists” are currently consdiering /recommending as ethical”
The article on infanticide that sparks this comment is, I agree outlandish and bizarre. I cant even believe that people wold seriously write things like that. Those authors are not in our culture and they do not have the power to change the values that Americans have held forever. Infanticide has existed in other cultures since time began and we still find it repugnant and nothing (even if a few rabid pro aborts defend it) prior to this has swayed our culture in that direction. I think that the article in question is so horrible that it has galvanized people to be wary against such an atrocity.
“AND given the history of hospice care for the aged and ill adult population which has been turned in exactly that direction — i.e. into facilitating termination as opposed to merely caring for the dying and assisting the family”
Granted I dont work in Oregon, but honestly, as a healthcare worker, I am around the care of the sick and dying and I don’t see in front of me this “facilitating termination” you describe. I attend the Clinical Ethics meetings at my hospital and in every case I can think of, any question of care was met with the more conservative course of giving continued aggressive care. In 26 years, I have never, ever heard a physician suggest we back away from aggressive care because it was expensive or some outside force was rationing care. I will allow others to speak for their observations and experiences, but this has been mine.
If people are fearful that their care will ever be compromised, they should draft a Catholic Healthcare Directive that explains clearly what they want and in my experience, specific patient directives ARE followed and the more specific, the better.
“why are you NOT certain that this corruption of the aims of perinatal hospice will occur?” ”
By the time a mom/couple gets into a neonatal palliative care situation, normally they have known about the child’s illness for a while. For the baby to even be born, they have already chosen to see what their natural life will be. People don’t maintain pregnancies with terribly sick babies just to euthanize them after birth. Prenatal euthanasia has been legal for 40 years and young people have grown up knowing that ending the pregnancy is an option and for them t be in this spot, they have already opted against that.
As for the cases of a baby being born with an unexpected condition…by the time it is diagnosed, the parents have seen their lovely little self…their pinkness, their fingers & toes. The norm is for the parents and the staff to fight for the little ones welfare. I have never seen this in my hospital, but I have met parents who have had to fight for their child to continue to receive aggressive treatment. I DEFINITELY see the trend is going towards parents having more power in this and the public discussions about perinatal disease will only increase that.
“The health care rationing of Obama care, aboiut which the administration is getting more and more public gives even more urgency to these warnings.”
I have never seen healthcare rationing in Neonatology and based on how we function as a society, I don’t ever expect to. While Im at it…I will tell you that I have worked in 6 Neonatal ICUs and I have never ever seen a Down Syndrome baby passively or actively euthanized. I know it happened back in the early 80s, but that is WAY in the past and dire warnings about that are just fear mongering.
“What you do is wonderful and if you don’t recognize that forces are in operation right now to turn it into something else, I am truly sorry.”
You wouldn’t say that you were sorry for saying such terrible things about us, but you are “sorry” that we don’t recognize the forces in operation in our area of influence? You severely underestimate me and my peers – both in our capacity to understand our work environment and to handle it appropriatly. Seriously.
Having the option of Perinatal Palliative care preserves (rather than terminates) life. It recognizes the beauty and value of life and lets it speak for itself. We are coming out of an era when babies with life limiting conditions were terminated as a regular course of treatment and now were looking at the whole topic anew. This care has been a game-changer and it will continue to be unless fear-mongering confuses the topic.
“But either we roll back the entire anti-life agenda of this government or it is certain”
Routine termination for fetal disease predated Obama by a long shot. This care will not only prevent a worsening of the situation, it will give options that haven’t been available ever before.
Hi,
I’ve been informed that this article generated a lot of discussion and first let me say this: those who are doing the work of hospice and end-of-life care with dedication, caring for the patients with love, are to be accorded the greatest respect. For over a decade, I’ve had posted on the Hospice Patients Alliance website:
“Serving hospice patients and their families is one of the greatest privileges and trusts a health care professional could ever be granted. Only those staff with great love, sensitivity, and compassion understand the real mission of hospice. Really, it is a “calling.”
It is a calling! And a very special one that people like care so deeply about! Mr. Pickup is certainly not accusing you of doing what you are not doing!
But, and this is important, because we’ve spoken with and corresponded with hospice specialists like yourself for many years, … just because you practice with integrity, honesty, clinical expertise and competence, does not mean that others in the industry also do the same. You cannot project your own good works onto the entire industry, especially when you have not been going around the country, working in all the other hospices around the country and seeing, for yourself, with your own eyes, what is going on there.
There is much that you may be unaware of. First of all, the culture of death is very much “alive and well” at the end-of-life end of the health care spectrum, as well as every other niche within health care. The Euthanasia Society of America and its successor organizations have successfully managed to infiltrate and direct the policymakers at the highest level of our nation’s health care industry, as well as in the government.
This is not about YOU! Please set aside any personal offense you may have and listen for a minute, read, study and learn what others who do not share your dedication or your values, are doing.
This is about the industry as a whole, and wherever culture of death type hospices are operating.
The National Hospice & Palliative Care Organization is THE successor to the Euthanasia Society of America! You may not have known that but it is:
http://www.hospicepatients.org/images/euthanasia-soc-of-america-to-natl-hosp-and-palliative-care-org.jpg
Please carefully study this timeline and the timelines at:
http://www.lifetree.org
to understand how this occurred over several decades.
The CEO of the Hospice of the Fl Suncoast, the late Mary Labyak, for example, along with the Chairman of the Board of the hospice at the time, pro-euthanasia attorney, George Felos, were looking for a “test case” patient to use to do hospice-euthanasia in an “in your face” manner, setting court precedents. When Michael Schiavo showed up at George Felos’ office, they had Terri.
Pro-Euthanasia Hospice CEO Mary Labyak was on the highest level board of directors of the National Hospice & Palliative Care Organization. So were many others who are pro-euthanasia. It’s time for people to wake up. Why would anyone be naive enough to think that the culture of death zealots who push abortion, wouldn’t be involved in hospice.
The modern founder of hospice in this country, Florence Wald, RN, former Dean of Nursing at Yale University, was pro-assisted suicide and euthanasia. She said, for example, in a JAMA article, “Hospice Care in the United States: A Conversation with Florence S. Wald” M.J. Friedrich JAMA. 1999;281(18):1683-1685]
http://jama.ama-assn.org/content/281/18/1683.extract
“I know that I differ from Cicely Saunders, who is very much against assisted suicide. I disagree with her view on the basis that there are cases in which either the pain or the debilitation the patient is experiencing is more than can be borne, whether it be economically, physically, emotionally, or socially. For this reason, I feel a range of options should be available to the patient, and this should include assisted suicide.”
What does that tell you? The patient’s life can be ended for “economic” reasons! What is that? Please explain that and how that “fits” with the hospice philosophy you practice. It doesn’t, yet she is considered the founder of the modern U.S. hospice movement, founded the Connecticut Hospice in 1974 in Branford, CT
Whose economic reasons should be considered when the patient is “assisted” to die? The patient’s? That doesn’t make sense. The family’s? … so they can get their hands on the estate sooner or keep the money they have rather than care for the living? Society’s economic interests? Ahhhh! That’s what the Nazis did. They went around and killed the neonates, babies, children, adults and elderly who were severely disabled, congenitally defective, mentally ill or who had dementia or simply ill. That was the Nazi T-4 program in about 1938-39. They just killed them either by shooting them with a gun (fewer cases) and perfected the killing of patients with morphine, which is practiced in many hospices in this country today.
I hear about this all the time, all the time!
Terri was not in any sort of PVS state at all. She was responsive. Anybody who knew her and cared for her know she responded to others. I spoke with her family members and nurses who cared for her. She was responsive after the attack. She had been contemplating divorce from Michael, bruises had been seen by some on her arms prior, there was a huge fight that night, and she was found gurgling with her hands up near her neck, face down while her “husband” sat on a couch reading a magazine, not doing CPR, though he knew how to do it.
Terri’s multiple fractures, injuries and permanent neck damage were only capable of being caused by an attack which has been very clearly forensically analyzed by forensic scientists. This is all explained in detail in the most complete book on the subject by my friend, Cheryl Ford, RN and Dr. Craddock:
http://www.amazon.com/Our-Fight4Terri-Cheryl-Ford-RN/dp/1412061407
The reason I bring this up is to prove to you that the guiding leadership of NHPCO is culture of death, through and through, though there are members who are not culture of death. They just join because NHPCO is the only national trade organization, though that is being changed as we speak. In any case, after they killed Terri, there was a big conference at NHPCO. When Mary Labyak and her Hospice of the FL Suncoast staff walked into the conference, the entire room filled with attendees stood up and gave them a standing ovation for killing Terri. Now what does that tell you? They were gleeful that Terri had been killed. The entire Terri Schiavo saga was all about hospice killing. They even changed Florida law to make it possible at the time.
I explain this in my book, Stealth Euthanasia: Health Care Tyranny in America.
Now, many pro-life leaders, including myself, hear from people all over the country about the hospice killings, using many methods, opioid overdoses, refusal to treat easily treated infections, intentional deprivation of food and fluids when the patient can take them in (they are NOT catabolic), terminal/palliative/total sedation till circulatory collapse occurs due to dehydration.
I have heard from Hospice medical directors, nursing directors, founders, administrators, RNs, LPNs, aides, volunteers, chaplains, social workers, therapists and others, as well as other physicians in communities all across the country for 14 years, that these killings ARE occurring. I’ve heard from families whose loved ones have been killed. These are not ignorant people, and they know the difference between dying, the signs and symptoms of dying, and outright intent to end life.
At the beginning of life, there is pressure to end the lives of the congenitally-deformed and different, Down’s syndrome kids being a big example, if the Down’s syndrome babies have not already been medically-killed before birth.
I have spoken to neonatologists as well as perinatal hospice nurses who also confirm that the killing of newborn and not newborn babies is occurring in perinatal hospice! It is not an exaggeration to say that this will occur! It is already occurring, right now in the United States.
You can go on perinatal hospice discussion groups if you want and ask them what they think about terminally-sedating a congenitally defective baby in perinatal hospice and see what they say if you want. Research.
This is hidden from the public’s eye through the HIPAA and HITECH Acts privacy regulations which are not about protecting the ultimate privacy of patients, but rather to create the privacy shield which prevents people from speaking out publicly about what they are seeing, and also prevents any research from being done to prove the epidemic of such killings.
If you truly care about hospice and especially peri-natal hospice, you will hear the cries of those who have been killed in other perinatal hospices and regular hospices, and help work to reform the industry. The first step in solving a problem is not to deny it exists, not to get defensive (this is NOT about you!&, but to hear, listen, try to ferret out what information you can, and then help.
You say you are a Christian. Wouldn’t the dear Lord hope that His children hear the cries of the vulnerable and come to their aid?
It is not necessary to have “only” Christian hospices, but pro-life hospices (which hospice was intended to be as Dame Cicely Saunders was pro-life, Christian and would be horrified about what is going on in the wonderful work she began).
Pro-life hospice and perinatal hospice can only exist when the administrators, managers and the entire staff are dedicated to the prolife mission, caring for those at the end-of-life (or who are dying at the beginning of life), never imposing death, allowing death to come when it will.
But you see, we hear from perinatal hospice nurses who say they’ve seen many times, babies who didn’t die “soon enough” being given increasing doses of morphine or dehydrated to finish them off sooner.
The reality of this world is not only beautiful. There is ugliness and evil in the world, as well.
Your good works are to be applauded.
The public needs to trust but verify, and if red flags go up, transfer to another perinatal hospice if necessary. We need more pro-life health care facilities, and that is why we are forming a Pro-Life Health Care Association.
Even with the obvious concern that a person should have for this topic and the caution that must exist to be prudent and careful, I still find that your dire warnings are full of blanket accusations. You don’t urge caution, you say that people aren’t to be trusted and killing WILL happen. I have worked in healthcare for 26 years in 6 states and I have never seen these things you say are rampant.
I specifically said that I have never seen a Down Syndrome baby passively or actively euthanized and yet you use that as an example of common wrongdoing. I have never seen “pressure to end their lives”. I think the fact that 90% of them are aborted is an abomination, but I think if there were a conspiracy to kill them afoot, I would have seen it once in all this time.
You speak of “Perinatal Hospice” using words that those of us who do it don’t ever use…I am not certain that we have a shared definition for what “Perinatal Hospice” is. (I dont know if you are maybe speaking of hospice care of pediatric patients or something like that but nothing you say is remotely similar to the program I run and am aware of. )
There really isn’t such a place as a “Perinatal Hospice” (so you dont transfer to a different one) or a “Perinatal Hospice Nurse” (unless you are speaking to the Director of a program. I started and spearhead our program and I dont know that I would call myself a “Perinatal Hospice Nurse” ), and there is only one single “Perinatal Hospice” discussion group that I know of.
The vast vast majority of my patients die in an hour or so and they rarely need pain medication so we don’t sedate at all, let alone over sedate.
Perinatal Hospice is more of a model of care and a philosophy than a place…the vast majority of care is given on Labor & Delivery (less than 1/4 of my patients even get to the NICU). If they survive, they go home to be FED (not starved) by their parents and none of my patients who has gone home has ever needed opioids, so the “increased doses of morphine to finish them off sooner” would not apply.
If you would like to describe to me the programs (or types of programs) you were referring to I could respond, but every component that you described does not apply to the model of care that I work within.
Actually, I do urge caution. That is exactly what I am saying. I did not say killing occurs in all hospital or hospice or neonatal settings, but it does in many settings.
Be careful how you use language and please do not misquote me or seek to twist the plain meaning of what I have written.
You clearly have not taken the time to do the simple things I asked you to do first: read the Timeline showing that the National Hospice & Palliative Care Organization is THE successor organization to the Euthanasia Society of America:
http://www.hospicepatients.org/images/euthanasia-soc-of-america-to-natl-hosp-and-palliative-care-org.jpg
which is very specific.
Read the timelines at the pro-life Life Tree Organization at:
http://www.lifetree.org
which is specific and detailed covering decades, showing the connections and funding by the culture of death and hospice/palliative care organizations, and how they have infiltrated medicine and hospice and palliative care, especially, with specificity.
Read the book, Stealth Euthanasia: Health Care Tyranny in America which I wrote to give specific information about these very questions, which has over 800 specific references from medical authorities, medical journal articles, internationally-recognized hospice and palliative care leaders, government spokesmen, policymakers and nurses as well as many others.
If you had read this book, with over 370 pages of detailed specific information, you would not have replied as glibly as you did. If you truly cared for the lives the dear Lord gives, you would take the time to consider the information presented before condemning it.
In addition, that you don’t know of “peri-natal hospice” is mind-boggling since it is well-known common knowledge in the field of neonatology and
those who work directly with the newborn.
I almost did not know where to begin when I read your post!
Peri-natology is very real, a recognized specialty within medical practice, which is well-known. Peri-natal hospice or palliative care is also well-recognized.
In the April/May 2002 of the Journal of Peri-Natology, Anita Catlin, DNSc, FNP21 and Brian Carter, MD, FAAP2 wrote about the “Creation of a Neonatal End-of-Life Palliative Care Protocol.”
This was written ten years ago! Anyone working in the field of neotalogy and caring for the neonates as you say you do, who is informed about the field, would know that there is such a thing as “peri-natal hospice” or “peri-natal palliative care.”
That you seem not to know this, leads me to question whether you really work within this field. It is shocking to me that you don’t know this and even more shocking that you imply it doesn’t exist.
Anita Catlin, DNSc, FNP, FAAN as we have seen, is one of the “founders” of the peri-natal hospice work and has written about “Five Incredible Babies, Five Paradigm Cases That Greatly Influenced Neonatal Ethics What Do Their Parents Say Today?”
http://www.sonoma.edu/users/c/catlin/Five_Incredible_Babies,_Five_Paradigm_Cases_.pdf
Barbara Farlow (a mother of a child whose life was taken in peri-natal hospice) wrote about her experience in an article called “Misgivings.”
http://www.livingwithtrisomy13.org/HastingsPublication.pdf
Peri-natal hospice is fast becoming the “2nd net” to “catch” and kill any babies with congenital abnormalities that weren’t aborted pre-birth.
There is no question that peri-natal hospice is functioning throughout our health care system. Here is a description of what happened with Presidential candidate, Senator Rick Santorum’s terminally-ill newborn, within a peri-natal hospice that did not kill the baby:
“For fatal birth defects, abortion is sometimes presented as the only option. But a better alternative is perinatal hospice. This involves continuing the pregnancy until labor begins and giving birth normally, in a setting of comfort and support until natural death occurs. It is similar to what is done for families with terminally ill children and adults. Karen Santorum, a nurse and the wife of former Senator Rick Santorum, was faced with the prospect of her own son, Gabriel, being born with a fatal birth defect. She describes how Gabriel lived only two hours, but how in those two hours “we experienced a lifetime of emotions. Love, sorrow, regret, joy—-all were packed into that brief span. To have rejected that experience would have been to reject life itself.” The sense of peace and closure felt by families experiencing neonatal death in a hospice setting contrasts markedly with the experience of families undergoing abortion for fetal anomalies.”
“IS LATE-TERM ABORTION EVER NECESSARY?” by Mary L. Davenport, M.D., FACOG†
http://www.livinghopeforlife.org/docs/Davenport-late-term-abortion.pdf
[Mary L. Davenport, M.D., FACOG, an obstetrician-gynecologist practicing in El Sobrante, California, used to perform abortions. She is the president-elect of the American Association of Pro-Life Obstetricians & Gynecologists. Go to: http://www.aaplog.org]
Clearly, that was a peri-natal hospice that did not hasten or impose death.
In the Netherlands, “eugenic” medical killing of babies is practiced under the Groningen Protocol – Euthanasia in Severely Ill Newborns:
http://www.nejm.org/doi/full/10.1056/NEJMp058026
“life-ending procedures for newborns may be carried out only in rare circumstances and in accordance with very strict criteria: the prognosis and diagnosis must be certain, untreatable disease, severe and unbearable suffering that cannot be alleviated, a second medical opinion, the full consent of both parents.”
“There are also a number of less objectively measurable preconditions that touch on questions such as the child’s prospects for quality of life. Each case must be reported to a committee of medical, legal and ethical experts ….” [from: “Murder or health care: the Groningen Protocol”
http://static.rnw.nl/migratie/www.radionetherlands.nl/thestatewerein/otherstates/tswi-080216-groningen-redirected
By Marijke van der Meer February 17, 2008]
In the United States, Dr. Paul A Byrne has written about peri-natal hospice. Dr. Byrne, “a Neonatologist, is Director of Neonatology and Director of Pediatrics at St. Charles Mercy Hospital in Oregon, Ohio, is Clinical Professor of Pediatrics University of Toledo College of Medicine, Board Certified in Pediatrics and Neonatal-Perinatal Medicine, Member of Fellowship of Catholic Scholars.”
“Dr. Byrne is past-President of the Catholic Medical Association (USA), formerly Clinical Professor of Pediatrics at Creighton University School of Medicine in Omaha, NE, and at St. Louis University School of Medicine in St. Louis, MO.”
http://hospicepatients.org/perinatal%20hospice%20-%20%20comment%20on%20tv%20show%20and%20article%20by%20paul%20a%20byrne%20md.pdf
I would think that Dr. Byrne knows what’s what! Past President of the Catholic Medical Association, “Byrne has the distinction of being a pioneer in the field of neonatology, beginning his work in the field in 1963 and becoming a board-certified neonatologist in 1975. He invented one of the first oxygen masks for babies, an incubator monitor, and a blood-pressure tester for premature babies, which he and a colleague adapted from the finger blood pressure checkers used for astronauts.”
http://www.lifesitenews.com/news/archive/ldn/2010/may/10051712
If you work in the field of neonatal care, as you say you do, you use technology that he invented and he says peri-natal hospice exists and can be dangerous if the agency/facility is not pro-life and seeks to impose death.
If Dr. Byrne knows about peri-natal hospice and so many others do, then I would encourage you to cease the uninformed assertion that peri-natal hospice doesn’t exist and learn something, please.
Hear the cries of those who are reaching out and telling their story, reporting to others what is happening in this country.
Read, learn, and if truly care, inform others about the truth. Do not blindly condemn or try to “explain away” what is being shared without thoughtfully considering it, reading, thinking, or inquiring. And again, do not project that all others do not kill babies, if you do not do it or haven’t seen it.
To say what is happening all across the country, you would have to have been all across the country, which nobody has done. To say what is happening in many parts of the country you would have to have researched what is happening around the country, and I have done this.
Peri-natal hospice exists. There are people who do not support the sanctity of the life the Lord gives. They are dominant in the health care industry. They think nothing of hastening or imposing death at any age, should they think the “quality of life” is poor.
If there are those who urge imposing death on the unborn, or the partially-born, why would you ever think there are not health care professionals and secular bioethicists who would not urge imposing death on those who slipped through and lived long enough to be born? Please wake up to the realities in America today.
I didn’t say that I had never heard of “Peri-Natal Hospice” (I do this care) I said that they way you spoke of it bore no resemblance whatsoever to what I see in my practice of Perinatal Hospice. I know well of Dr Catlin and the other references you mentioned. I know well of neonatology as I worked in it for 16 years.
Your comments seem to be based on your misunderstanding my post. Your language of it are not what we use in our care, the warnings you give are not even clinical situations that I run into…I gave you 3 examples.
I am and intend to stay diligent about maintaining the highest of ethical standards in my work.
My gripe with your writing is your blanket accusations that “Secular perinatal hospice is not to be trusted” and “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,” . In these statements, you aren’t urging caution and diligence, you are accusing.
Hi Perinatal Loss Nurse: You actually wrote:
“You speak of “Perinatal Hospice” using words that those of us who do it don’t ever use…I am not certain that we have a shared definition for what “Perinatal Hospice” is.”
You are again twisting what I wrote. Please consider carefully what is shared.
Also, before jumping into challenging what is written, you really, really need to read the Timeline, read the book, Stealth Euthanasia
http://www.hospicepatients.org/this-thing-called-hospice.html
so that you understand the world around, outside of your particular unit and know what is “coming down the pike” and where the secular bioethicists are leading health care, and yes, eventually, your unit.
Nobody questioned your ethical standards. You continue to take this personally, when it is a discussion of what is happening in our nation, the world and is not about you. It’s wonderful that you are dedicated to the highest standards.
Please hear what is happening in places where they don’t agree with you! … where they don’t hold Christian values and do impose death.
I never said “ALL” hospices or peri-natal hospice or palliative programs will do this or that. What is important to realize is what <i<some or many will do.
Peri-natal palliative or hospice care does not happen in a vacuum separate from all other palliative care and end-of-life care. There is a driving philosophy behind it.
Originally, hospice as a philosophy, a mission and a place where care is provided, was pro-life, Christian and run in England by Dame Cicely Saunders.
In the USA, hospice as a philosophy, a mission and many specific places where care was provided was not started specifically as a Christian service at the Branford, CT “Connecticut Hospice.” It was run by Florence Wald, RN who was pro-assisted suicide and was not pro-life in any sense of the phrase at all.
Let’s get real here about this “hospice is not a place” nonsense… or it’s “more of a philosophy.” There are thousands of hospices that provide end-of-life care services and they are specific places, specific businesses with facilities or agencies and staff that provide those end-of-life care services. If the care is provided in the patient’s home, then it’s just as much a health care service as home health care or any other visiting nurse service.
Hospice is about a mission, yes. But it always is also about providing services in some place, facility or home.
Palliative care is a subspecialty of medical and nursing care and need not be in a formally-licensed “hospice” per se. It can be provided anywhere, as in peri-natal units in hospitals.
The driving philosophy behind health care in the United States is secular bioethics and was codified into law in 1978 by the U.S. Congress through the work of a special commission who released their “Belmont Report.” The Belmont Report was immediately used to guide research on unborn embryos and fetuses, using principles that were in violation of Christian and Catholic principles of serving life, not killing.
The Belmont Report commissioners came up with three main principles: autonomy, beneficence and justice. These three principles have been used to justify ending the lives of patients who are embryos, fetuses, children, adults, elderly, terminally-ill patients as well as the disabled.
If you are not familiar with the Belmont Report and the threat that secular bioethics poses to the pro-life mission and the lives of the patients, anyone would do well to read the excellent articles by Prof Dianne N Irving, PhD who is an internationally-recognized authority on these matters. “What is Bioethics?”
http://www.lifeissues.net/writers/irv/irv_36whatisbioethics01.html
and “The Bioethics Mess” are highly recommended:
http://www.lifeissues.net/writers/irv/irv_37bioethicsmess.html
She provides great insight into what secular bioethics is.
Now, when you mention “secular” hospitals or rather “secular peri-natal hospice” people will know exactly and specifically what is meant, what the philosophy behind it is and where it is leading health care practice.
Secular bioethics is antithetical to the pro-life vision, antithetical to Jewish, Christian, Muslim and other religious beliefs. It is based upon a materialist, utilitarian view of life that recognizes no God, no soul, no purpose to life beyond what is materially identifiable.
The secular principles of autonomy, justice and beneficence are re-defined by the secular, utilitarian materialists in ways that a Christian (or other person of faith) would never do (read Dr Irving’s articles for details).
Administrators who follow secular principles do not honor God and the sanctity of life first. Of course, there may be administrators, physicians or nurses, etc who do have faith and may attempt to honor God and the sanctity of life first and foremost.
However, when there is a dispute, a problem, questions of what to do, the ethics used in secular facilities, hospitals, etc., will be the principles encoded into federal law by the U.S. Congress in 1978: autonomy, beneficence and justice (as utilitarian, materialists define them).
So, having said that, I say with full confidence that yes, secular hospital care, secular palliative care is not to be trusted. That’s a blanket statement you can quote. Why? Because secular bioethics is, at is most basic, a direct challenge to the sanctity of life, reverence for life and the Ten Commandments that remind us, “do not murder.”
This is not the same as saying you murder, or your palliative peri-natal services kill babies. It’s to caution the public that babies may be hastened to death or have death imposed. Therefore, “trust, but verify.”
That is not saying “all” do this or that. But when a question comes up about “what to do,” and the family wants treatment, oxygen, nourishment provided (if the baby can absorb that) and the docs don’t want to do it, the hospital futile care (ethics) committee in a secular facility will use the “federal ethics,” which is “secular bioethics” to determine what happens, and seek to override the parents.
That is a fact. It happens regularly across the USA if the doctors’ recommendations for withdrawal of treatment, withholding of treatment is not in line with the parents’ Christian values.
A nurse on a palliative peri-natal unit cannot override the hospital’s ethics committee. The administration is behind what the hospital’s ethics committee determines. They are the employer, the management. Any nurse who objects to what is determined will be in trouble, eventually or immediately, depending upon the circumstances.
I’ve heard from such nurses over the years. Challenge management about such things and the nurse gets labeled a “troublemaker,” is sometimes harassed, retaliated against or outright fired from employment.
Again, I do not say, “all” peri-natal hospices or peri-natal palliative care units do this or that, but many do. If your unit doesn’t, that’s great! But it is not wise to ignore the knowledge of these matters that some great physicians and nurses have warned us about, like Paul A Byrne, MD, past-President of the Catholic Medical Association.
And so, Mark Pickup encouraged the formation of Christian peri-natal units providing the care needed by those so much in need. I would agree that they are needed, and also say that if they were simply and truly “pro-life” serving the ethics of life, the sanctity of life, and pledge to never impose death through withdrawal of treatment, withholding of treatment or outright imposition of death through various medications, that would be wonderful.