Transcript for the Piece Audio version of Intersect Perinatal Hospice

Perinatal Hospice Transcripts
By Miles Eddy
Copyright 2005, Midi Age Productions
(719) 379-0308
Web: www.midiage.com
Email: midiage@fone.net

September 25, 2005

---- BEGIN ----

INTRODUCTION: (Full Show Length 28:30)
Welcome to Intersect, exploring the interface of life with the human experience. This is your host, Miles Eddy.

There are few subjects that challenge the human experience more then life-and-death issues, especially when parents have to make those decisions for their infants. I recently spoke with some parents who got devastating news about their pregnancy, and to the medical professionals who try to help them get through it.

CHAPTER ONE: A Parents Story
Length: (7:16)

MILES:
Hospice care is something that most people associate with elderly people, or at least terminally ill adults. But what happens when the life that is ending is still in the womb?

JANELL:
I’m Janell. We’re expecting our third child who is born with a fatal heart defect.

MILES:
Janell lives in southern Colorado, and when I spoke with her in May of 2005 she was nine months pregnant! She had learned many months earlier that there was a serious problem with her unborn son.

JANELL:
We went to Denver and saw a couple of specialists and they did a specialized ultrasound on the baby’s heart and determined he had HLHS, which is Hypoplastic Left Heart Syndrome. It’s when the left ventricle of the heart, due to a genetic abnormality, does not grow.

With HLHS there’s three choices that they gave us. The first choice they gave us was hospice care, or comfort care for him. The second choice was a heart transplant, and the third choice was an experimental surgery; it’s called the Norwood operation. The pros and the cons for the heart transplant were that he would be at Children’s Hospital probably a minimum of 6 months in Denver waiting for a heart. And then we would have to live there, in Denver, an additional six months while they dealt with his medications.

MILES:
Janell also had to weigh the affect of trying to save her third child on the two daughters she already has.

JANELL:
Our oldest with be four and our youngest just turned two. The specialists, some of the surgeons we spoke with at Children’s [Hospital] did mention that there has been some resent research showing the long term psychological impact of sick children being brought home to siblings, or to the family unit and when you bring home a sick child, the whole world as they know it ceases to exist because everything revolves around the sick child. So that was a decision that we had to make regarding our girls.

MILES:
Janell made the wrenching decision to go ahead and give birth to her son, but not to try and correct his terminal heart defect.

JANELL:
As soon as I’m health and able then we’ll discharge from the hospital and go under Hospice care.

MILES:
The support of Janell’s family is also important to her, and as it turns out, her mother Lois Booth not only lives close by, but also is the Executive Director of the local hospice.

LOIS:
This hospice nurse is experiencing not only a hospice experience, but a grand mothers experience and so there’s quit a journey here.

MILES:
In making decisions, consideration was also given to their unborn son.

JANELL:
We wanted to know the hard-core details of what our little guy would be going through. Because in our opinion, if we weren’t willing to go through what we would be putting him through, how could we expect him to go through it himself. And for some, the thought of losing a child, after you put so much effort and time and money into it and then you still lose them and you sacrificed your family in the process is an overwhelming prospect.

LOIS:
Because we don’t know if this child would survive surgery or not. So are you willing to sacrifice what you know for what you don’t know, and that’s a pretty profound decision to have to make.

MILES:
Janell and her husband wanted their daughters to know, that despite the shortness of his life, their brother was important.

JANELL:
We wanted to have the family pictures and the album and the mementos so that they could look back and realize that they had a baby brother and that he wasn’t swept under the carpet or that he was not acknowledged. He was a very loved, appreciated addition to our family, so that they have some closure and not the secrecy that unfortunately, decades ago is was what was associated with the lost of a child.

MILES:
They’re pretty young. How much have you told them and how much do you thing they understand?

JANELL:
Kids are amazing and they actually probably comprehend more than most people give them credit for. We have minimized the baby thing significantly since we have found out that we would be losing him. And so we’ve switched from me having a baby to the fact I’m having an angle, and it seems to be a really good transition for them, and they seem to accept that distinction that we’re having an angle.

LOIS:
I think there’s a lot of resolution that has to come in the terms of our own spirituality and if we’re comfortable with this little soul returning again to God, which is what we believe. And so, if we’re able to allow that, then death doesn’t because as monumental.

MILES:
Despite the difficult situation, Janell and her family aspire to find meaning.

JANELL:
When you’re faced with the prospect of your child being around a few days, you have to wonder what impact he can leave on the world and we learned that because infants are so small they are not considered candidates for tissue donation. And then we looked into developing resources and information to families who are, or going to, or have suffered the loss of a small child.

LOIS:
By talking about it openly and freely, it’s also part of a healing process. It’s part of the processes of knowing that this little soul is going to make a difference.

JANELL:
Every family is different and everybody has different circumstances and every choice is the right choice for a family. Our story will help other realize that they’re not alone if they’ve been down this path because I don’t what it to be a “my” story. But I want it to be a parent’s story of a journey that all of us hope that will never have to travel down, or will never have to travel down again.

MILES:
On May 20th, 2005, Janell had an eight-pound three-ounce baby boy. She took him home one day later where she and her family were able to spend time with him, take photos, and say goodbye. He died at home, 46 hours after birth, in his father’s arms.

CHAPTER TWO: A Story of Perinatal Support
Length: (5:32)

MILES:
Thousands of parents a year are faced with making informed decisions when their unborn baby has an uncertain outcome due to birth defects and other life threatening problems. The Fetal Concerns Program in Denver, Colorado, provides comprehensive care and support when pregnancy is complicated by concerns of fetal abnormalities. I spoke with representatives Annette LeBel, registered nurse and the Perinatal Loss Coordinator at the University of Colorado Hospital, and Nancy English, PhD, RN, and the Palliative Care Nurse at The Children’s Hospital.

Annette LeBel.

ANNETTE:
There’s tremendous need. Families will come in and get a diagnosis and they have few options and one is to terminate or to carry the baby to term, and if they carry the baby to term there’s no support in-between the diagnosis and the delivery and they have no idea what’s going to happen at delivery and what this will do is help with participatory grieving and support through the rest of their pregnancy and make a plan for the actual birth, delivery, and death of their baby.

It’s the first decision you make for your child.

MILES EDDY:
Nancy English.

NANCY:
I have seen women, they come in and they are sitting there and they’re trembling. First one we saw out at Fitzsimmons, she was just trembling, she was so scared - she was so scared. Basically that’s how it all began. These women are scared to death and there’s nobody there to help them and the doctors don’t know. They have a line up in the office that’s 20 patients to see these women, and they can’t spend hours helping with decision making.

ANNETTE:
They go home with this diagnoses and they either wait for the baby to die in utero, or they wait to come in and deliver and then are terrified of the thought of delivering a baby that’s going to die or has already died.

NANCY:
The common thing is “Oh, you’ll have another child, it will be all-right.” And that is the most really hurtful thing to say because this child is what’s import.

ANNETTE:
People who have miscarriages in their first trimester, 75% of those people view it as the loss of a baby.

NANCY:
The palliative care is really coming into the idea that people with a life threatening illness, they need psychological support, they need preparation for death, they need help with decision-making. They need all of that and there isn’t that available until palliative care is more recognized and it becomes an entitlement of some sort.

ANNETTE:
So this way we sit down after all these diagnosis have are made and they’ve seen all the referring physicians and then they come and sit and talk with us. We sit down and go over again the diagnosis so they really have an educated version of what this anomaly is and so that they can make the decision that is really right for them under much calmer circumstances.

MILES:
In medicine, there’s a lot of information to consider. But decisions have to be made based on more than the facts. The spiritual, emotional, and physical needs of everyone involved also need to be considered.

ANNETTE:
It isn’t a thing that will just die. It’s a baby! It’s a real live person that has a life and needs to be recognized and named and laid to rest with dignity. I probably wouldn’t have been in doing what I’m doing if I didn’t have a loss and didn’t really realize the importance of support for families. Part of what we did was to be advocates for the family.

NANCY:
Because it’s a lethal diagnosis, which is incompatible with life, or for the best interest of the child, the prolonged suffering the child would go through, it would not be wise to presume some life surgeries and multiple surgeries and multiple medications. It’s all right not to pursue aggressive care. It’s OK to really insure the spiritual care of the family, the psychol/social care of the family, make sure the baby has the best, give it an identity, giving it all the things that the baby deserves as part of this family.

ANNETTE:
Support groups in the area of perinatal loss and the recognition of perinatal loss really probably started in the early 80’s. There’s a number of organizations; Bereavement Services which is out of Wisconsin, the MISS Foundation which out of Arizona; the Colorado Fetal New Born Loss which is out of the Denver area in Aurora; and a number of hospitals in Denver. Lutheran hospital has a group called “SOLIS (Spelling?)”; Swedish has Assistance with Grief; there’s a national organization called SHARE (Spelling?) and they also have members all across the country that runs support groups.

MILES:
For more information about the Fetal Concerns Program, call Nancy English at The Children’s Hospital of Denver at 303-864-5548, or Annette LeBel at 303-372-4021.

INTERLUDE
Length: (0:37)

You’re listening to Intersect, exploring the interface of life with the human experience. This is your host, Miles Eddy.

CHAPTER THREE: PERINATAL/NEONATAL ETHICAL ISSUES
Length: (7:02)

MILES:
Do you believe in being allowed to die a natural death, or should people be kept alive at all costs? Those are tough questions, and they get mixed up into an even tougher dilemma for parents who discover that the child they have conceived has been diagnosed with a terminal illness. Not all people face the same situations with the same beliefs about what is right and wrong. The ethical issues placed on the family and the medical communities are enormous. The 4th Forum of Perinatal / Neonatal Ethical Issues was held in May of 2005 in Colorado Springs to address some of these issues. After the first day of this three-day event, I spoke with some of the guests and event organizers.

MILES:
Nancy English is a palliative care nurse at The Children’s Hospital in Denver. She also teaches a course on ethics.

NANCY ENGLISH:
There isn’t a lot of support for education on the ethical decision-making and how to help families make those difficult decisions; what happens when a child dies.

MILES:
Malesa Purdhomme is the Care Manager at The Children’s Hospital at Memorial Hospital in Colorado Springs.

MALESA PURDOMME:
Ethics is a huge part of our perinatal / neonatal world.

MILES:
Sue Townsend is a neonatologist at Memorial Hospital.

SUE TOWNSEND:
People say that to be a neonatologist you have to be an ethicist. But if you don’t have any formal training in it, then you don’t have the tools to deliver good care.

MILES:
Mary Lemmons is a Neonatal Nurse Practitioner and one of the founders of the forum.

MARY LEMMONS:
There’s a huge diversity of opinion about what is right and what is wrong, and that’s normal.

NANCY:
Ethics is about helping families make informed decisions and helping them know what they’re making a decision about.

SUE TOWNSEND:
There’s a lot of complexity and potential conflict in the care in the nursery that has lead to the need to have increased education around ethical issues. There’s differences in values and differences in belief, differences in education, and there’s a big need for improved training and communication in this area so we can improve the care of all newborns.

MARY LEMMONS:
One aspect of this also is the impact on society of tiny preterm babies and very sick babies, because the impart is not just to the baby but it is to the family, it is to the community as a whole in every aspect whether it’s school system all the way down the line; as an adult, the care that is required. So it’s an issue that is important for every person.

MILES:
Dr. John Burrington is a retired surgeon from Colorado Springs and one of the founders of the forum.

BURRINGTON:
The bedside nurses and everybody involved gets tremendously emotionally involved with these small babies that are so sick, require literally minute-to-minute care, and then at a certain point you realize they’ve had a major bleed into their brain, or something of the sort that is not reversible and so they literally, many of them, grieve just like a parent when they loss these kids.

MARY LEMMONS:
Well I think you develop bonds differently with different families. Some you are automatically drown to and you fall in love with those families. Maybe not every family that you take care of, it’s a natural process. There are always people who you become closer to. But I think when they go through a grieving process, if it’s a family you’re vary close to, you go thru the grieving process with them. You become very close. You because a part, almost, of that family.

SUE TOWNSEND:
I don’t agree completely with what Mary said. I think you can develop a professional persona that demonstrates empathy and develops a relationship with families to help them through the grieving process, but you can do that without having a close relationship or friendship with the family. It does contribute over time to the burnout of many neonatal care providers because there is a lot of death that we deal with in the nursery. So nurses, physicians, other care-providers can get very drawn and close to families and then experience a lot of grief too. So I thinks it’s important to develop mechanisms for coping and it will very from provider to provider. Some people do better when their closer to the family, others do better when their not as close to the family but still can maintain a professional empathy with the family.

SUE TOWNSEND:
One of the unique aspects of a neonatal death is that the baby often will never have left the hospital. So the only person, the only people, the only community who know the baby or new the baby are the staff in the Nic-Que (neonatal intensive care unit) and so the family has never had the chance to take this baby home, show it off to the neighborhood, so we became the neighborhood and the community.

MILES:
When communicating, care providers need to be sensitive to cultural and spiritual differences, for example, a distrust of authority figures, or a strong religious belief.

SUE TOWNSEND:
So you have to develop that trust, and in some situations the physician may not be the best person. And often it isn’t. In the nursery we rely very much on the relationship the parents develop with the bed side nurse, or the nurse practitioner, or with the respiratory therapist, or the rehab specialist, because the parents need to trust the people who are making recommendation to them. So it is a process that depends heavily on that trust.

MILES:
Friends and colleges often know few details about someone’s complications of a pregnancy, and the casually comments of acquaintances can have unintended consequences to a grieving family.

SUE TOWNSEND:
This woman with this fetus who had this server disorder was having trouble at work trying to decide how to tell people that she was pregnant because people would react to her with great congratulations and joy and she was suffering that her baby had this potentially or likely lethal anomaly.

NANCY:
That grief process is important. To hold the baby, if they want to, to look at it, to name it, to have a ceremony, and what we’ve tried to do is have the spiritual support right there in the delivery room, have it baptized, because those things are important to parents, if they want it.

MILES:
Ethics are a part of our daily lives in every decision we make. It’s not until we have to make choices that have no clear outcome that our ethics are challenged and we have to re-evaluate what we consider right or wrong.

For more information about the Forum of Perinatal / Neonatal Ethical Issues in Colorado Springs, contact Malesa Purdhomme at 719-365-6953.

MILES:
Reporting from Alamosa, Colorado, this is Miles Eddy.

CHAPTER FOUR: A Matter of Language:
Length: (5:23)

MILES:
How we view a situation can drastically change how we make decisions, and the language we use can affect our perspective. Doctors and nurses have to communicate complex and difficult issues to grieving families, who then have to make informed decisions, often in a very short time span. How those questions are phrased and presented is very important.

Dr. Doug Diekama is the interim director of the Seattle Children’s Center for Pediatric Bio-Ethical. He spoke at the 4th Forum of Perinatal / Neonatal Ethical Issues in Colorado Springs about ethics and the use of language when communicating with families.

DR. DOUG DIEKAMA:
Most of us just make the assumption that the way we understand an issue or a situation is just like everybody else does and the reality is that it’s not. We interpret sort of this reality out there very differently than other people may. And when you listen to the language in which people use to describe ethic issues in particular, sometimes it hard to believe they’re even talking about the same issues because they use such radical different terms to describe it and you saw that happening with the Terri Schiavo case. The way people described what was going on with Terri Schiavo was radically different depending on how they were viewing the issue.

MILES:
Retired surgeon, Dr. John Burrington (From Colorado Springs and one of the founders of the 4th Forum on Perinatal / Neonatal Ethical Issues.)

DR. JOHN BURRINGTON:
We all communicate in phrases that are comfortable. We kind of package ideas and information sometimes into a word or two. I think television has popularized things like “at all cost” and so on. It’s sort of a knee-jerk type response to “do you want to intervene” and they have no concept of what at-all-cost means. Do you mean you want us to innervate him and leave him on a ventilator the rest of his life? Do you mean you want to have him have I.V. sticks every four hours for the rest of his life? Un-bundle the term “at all cost” and sit down with him and say specifically “do you want this, do you want that, do you want the other” and I think it cases them to focus on what the term means in terms of hour-to-hour existence of their child.

SUE TOWNSEND:
I’m Sue Townsend I’m a neonatologist at Memorial Hospital. There’s no question that communication is one of the mainstay of good ethics. “Do not resuscitate” vs. “allow a natural death.” It influences the framework around how you view the question and also how you communicate to parents and how they’re going to view the issue. So the language that we use is very important and will alter the perspective and the tone of the conversation. No question about it! We need to do a better job of training all of us to be sensitive to the effect of different kinds of language and to give people scripts or roll play or other tools to practice different ways of saying things, which may very in different contents.

MARY LEMMONS:
I’m Mary Lemmons, Nurse Practitioner at Memorial Hospital. “Do you want everything done” and “this is what we can offer your child.” One makes you feel guilty if you say no; the other one allows you to feel OK about the choices you make.

NANCY:
I’m Nancy English. Words have an impact and in my work with families, they remember the words for years. The words that are said in that initial diagnosis or that initial crises; that is absolutely embellished on their minds forever.

MALESA PURDOMME:
I’m Malesa Purdomme. I’m the care manger of the Nic-Que [neonatal intensive care unit] at Memorial Hospital. The language that we use and the language that they have sometimes are so, so different. We always used to say, “Do you want everything done?” Well, to me that means one thing. To a parent, maybe they don’t even want an I.V. We’re trying to explore every opportunity to have better communication with the family so they can make decisions.

MILES:
Dr. Diekama.

DR. DOUG DIEKAMA:
You know, for many of these situations there may not be a right or a wrong answer. You try to seek the best answer, because they’re tragic situations. They’re situations were almost anything you did has some good attached and some bad. It’s important that families and health care providers have a discussion about how they want that child or person’s life to end. Do they want it be a in a violent way with people pounding on their chest and putting tubs in to make them breath and perhaps allowing them to live another week or two, but in a very technologically dependent way, in a way that is not at all comfortable? Or do we want to allow them a natural death, which is to recognize that death will come, and we can make that comfortable, or we can make that miserable, and most people would choose to make it comfortable.

PROLOG:
It’s curious how we find meaning and a sense of purpose at the most difficult times of our lives. It’s common to feel alone when tragedy strikes. But despite the ethical and spiritual challenges, there are people out there who can help. Actively engaging in dialog, and sharing compassion, empathy, and experience with each other is as important in human evolution as any medical procedure we can do to prolong life.

Reporting from Alamosa, Colorado, this is Miles Eddy. Special thanks for this program goes to Nancy English from the Fetal Concerns Program, Mary Van Pelt, and Eric Whitney at KRCC, Community Radio in Colorado Springs.

TRAILER:
You have been listening to Intersect, a series of interviews and special interest stories exploring the interface of life with the human experience. Produced by Midi Age Productions in the beautiful San Luis Valley of southern Colorado. Original music is by Miles Eddy. For a copy of this program, or for links to more information about this subject, visit us on-line at midiage dot com; w-w-w dot M-I-D-I-A-G-E dot com. Our phone number is 719-379-0308. Thank you for listening, and until next time, this is your host, Miles Eddy!

---- END ----

Back