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Free perinatal palliative care, i.e. comprehensive care for a pregnant woman who gives birth to a child with a lethal defect, as well as accompanying her and the newborn child until his death, will be guaranteed to every woman in Poland. This is one of the regulations to the “For Life” Act. Medonet talks with Krzysztof Szmyd, MD, PhD, president of the Hospice for Children of Lower Silesia Association, which runs a perinatal hospice in Wrocław. It is one of a dozen operating in Poland. So far, they all operate outside the health care system.
Dorota Przerwa, Medonet: Perinatal hospice is needed?
Dr. Krzysztof Szmyd: The situation of a family that learns about an incurable disease of a child before it is born is extremely difficult. Normally, parents who are waiting for a baby are happy to be born. Once in the world, their lives change a bit, but everything works. The situation is different with a terminally ill child. Imagine that the family is waiting for a terminally ill child. She must prepare for childbirth. In the birthing school, the mother will be among the happy women. They discuss what color of children’s costumes is fashionable this year, what pram to buy, what clothes are worn by a descendant of the royal couple in Great Britain. And she’s waiting for a baby to live an hour or two, or maybe die just before delivery. For her, being in a place like this birthing school will be unbearable. Because she is already saying goodbye to her child. Doctors said: we cannot help, modern medicine cannot cure your child. This is a traumatic experience. It’s not like we’ll wipe away our tears and be able to go on after a week. It is not like some people say: please do not cry, do not experience it, it is so small, you are not used to it yet. That is why we are here so that the family can return to normal functioning, so that people can face difficult experiences, in this case the incurable disease of the child.
In such cases, medical care should be different.
The woman has a child within her, and this little man will die. That is why she should give birth in decent conditions – in a separate room, because the birth may look a bit different. After giving birth, she should stay in a separate room. She cannot lie with other women, because the situation and conversations that take place in her family are completely different from everything that is happening around. Anyway, at each stage of pregnancy, before childbirth, during and after childbirth, the situation is different. Moreover, doctors who look after the pregnancy, and after the baby is born, must also use different procedures than in the case of a healthy baby. The indications for caesarean section or its absence are different, and the indications for birth monitoring are different. Such a simple example: parents know that a child who is born has a damaged heart. As standard, in hospitals, a woman giving birth is connected to a child’s heart rate monitor. Camera beeps: beep beep… You can hear the baby’s heart all the time. A woman who is waiting for a terminally ill child with a heart defect can also be connected to this device. But you can also say: – There is no such need. Because for many hours she would have to listen to, for example, her child’s heart rhythm disturbances, listen for how the heart slows down, how it starts to beat intermittently, so maybe she should not be exposed to such situations. It seems like a trifle, a trivial matter, but every little detail adds up to what happens to these people afterwards. Because in our work, we mainly have to think about how people who have suffered suffering will cope later. Will they be depressed, with remorse and old mourning. Will they stay with such experiences for life, or will they stay with the feeling that they have done everything they can for their child. Difficult experiences can break us for life, but if properly lived, they can give us strength.
A perinatal hospice has been operating in Wrocław for several years.
We have been operating for three years. Once a couple came to us who were told that their future child had a confirmed genetic defect. We started to explore the topic and suddenly it turned out that in the hospital at Borowska there is someone who would like to deal with such cases, someone else is at the hospital at Kamińskiego, there are doctors who would like to help in managing a difficult pregnancy, there is a lawyer who would like to help parents explain various matters, for example concerning burial rights. Suddenly it turned out that the hospice is already there, you just need to collect these elements. Because a perinatal hospice is not a place, it is a way of thinking.
In Wrocław, we managed to closely cooperate with two hospitals, although the cooperation with the University Hospital is the most structured. There is a midwife in the hospital who takes care of the family from the beginning to the end, helps to plan and coordinate all meetings. The hospital allowed us to operate and all the time the heads of the two involved in the care of the child and the mother of the clinics are helping. We are extremely grateful to them for that. The positive role of the management should not be forgotten either. There is a psychologist in our team. At least 20 people were involved in working for the hospice. And we do it absolutely for free, on a voluntary basis, because we believe that it is necessary.
A chain of people of good will?
A bit like that. It works like this: I know a professor from the clinic, I call him and ask for a consultation for the patient. The midwife knows a gynecologist who will see our patient with empathy, so when he needs a consultation, we go to him. We know someone who does a very good ultrasound of the fetus and when a woman needs such an examination, we call you, please. Everything is done this way, you can say “by acquaintance”.
In the first year of our activity, we dealt with several such cases, this year there are several such cases from summer holidays to now. And this does not mean that there are more and more terminally ill children. This means that more people find out about the perinatal hospice and realize that it may be the right way. Parents who survived the loss of a child talk about their experiences, blogs on the Internet, there were reports on this subject on TV. I think the more we talk about it, the better, because the real point is for women to have a real choice. From the experience of several years of working with dying people, I believe that today we should fight for institutions such as perinatal hospices in Poland. Without the help of an institution that can create a real alternative to termination of pregnancy, there is really no choice.
You formally operate outside the healthcare system.
It is true that perinatal hospices operate all the time thanks to the good will of people, but this way they cannot function forever, changes are needed.
Perinatal hospice must have some kind of institutional form that helps people struggling with the incurable disease of the child at the stage of pregnancy. It has to be some institutional form for various reasons – legal aspects or, for example, liability. It cannot be something that formally, according to Polish law, does not exist. There must also be some mechanism to convince people who diagnose and talk to the mother of a sick child to think about consulting a woman with us, sending her to us for an interview or to people who deal with perinatal care. That a woman, when making a decision, could really make it consciously.
I cannot say whether such referral to an interview should be compulsory, maybe some form of encouragement should be introduced? For example, a ward that wants to cooperate with units, such as perinatal hospices, has additional points in the contracting procedure with the National Health Fund?
Our estimates show that Poland needs at least one perinatal hospice in a voivodeship (perhaps more in larger voivodeships). And for this institution to work, there must be a few people who will provide their services part-time. But we are talking about the costs of several thousand zlotys per month per voivodeship! It really doesn’t take much for this to work.
There is no uniform formula for a perinatal hospice. In Poland, each has developed its own model. According to you, the ideal perinatal hospice is …
My dream is this: after diagnosing a severe defect in a child, the doctor says, in accordance with the law, that the woman has a choice. If she decides to terminate her pregnancy, it will be like this and so. If he decides to be born, there is an institution that will help him through it, help parents, all those who are affected by this disease and death. The doctor gives the phone number, address and asks you to contact us.
The woman contacts the hospice and we plan the first meeting, first talks. Because there are many topics that you have to deal with. These are the issues of childbirth, postnatal care, what therapies they can use. Parents have a lot of questions, they don’t know what a persistent therapy really is, what a borderline is, what is a persistent treatment, see. They ask what the child will be able to receive. I had a family who asked if their baby would get milk at birth. So we are here to talk, to explain.
There is a psychologist on the team so that they are with the family and help them deal with the loss of their child. Because there will be crying, regret, there will be difficult feelings, grievances in the family, looking for who is guilty “after all, everyone in our family is healthy, it must be because of her.” We have a person who will coordinate medical consultations or help the family come to these consultations. If a conversation between two parents is needed, we ask if you have healthy children at home and are they cared for, because if not, we will send a volunteer to take care of your children when you are at the consultation.
What would be an ideal situation?
In the ideal model, we have contact with the family and we know if you have the opportunity to come to us. If not, we must go to them. We must have time to meet and talk, in conditions in which they will be comfortable talking.
In the next stage, work in the hospital begins. In the hospital at Borowska Street, we have people who coordinate all consultations, arrange meetings for the mother, wait for her at the entrance to the hospital so that she does not get lost and lead her to the ward. You have to remember about all this. If we want to make people with the world collapsing on their heads cope, we need to be with them. Need to pick up the phone if they call on the weekend. This is an ideal model of care during pregnancy.
Then the hospital takes over the reins. In the perinatal period, what the gynecologists and neonatologists will do is crucial. On the one hand, we have doctors who are responsible for the management of pregnancy and childbirth, and on the other hand, we have doctors who are responsible for what the care of this sick child will look like immediately after birth. In this model of ours, which I think is working well, we create a hospital-based birth plan that is part of the mother’s records. So even if she goes to the hospital with labor pains, for example on Saturday night, and there will be a doctor on duty who has never seen her, the documentation contains everything that was previously determined.
A child is born …
When the baby is born, another specialist appears – a neonatologist. And he, too, must know that the child’s disease is an incurable disease. Because when, for example, a child begins to breathe worse or the heart works worse, in normal situations we turn on all medical procedures: intensive care unit, resuscitation procedures, we connect it to any devices that can be saved to save lives. For a child with an incurable disease, these procedures are different. We do not fight for the child to survive one more day, but that it does not hurt at that moment, it does not feel short of breath, that it can be on the hands of mum or dad, in the room with the parents. We do not take him anywhere, we do not run to another ward, we do not connect him to other machines, so as not to prolong the suffering.
In the ideal model, we have a midwife who worked with her family during pregnancy, her parents trust her, she cares for the delivery setting to be as expected by the parents. If they want a photographer, the midwife makes it possible. If they want a souvenir, e.g. a imprinted foot that they can keep, they get such a souvenir. We take care of souvenirs so that parents have something to come back to. Because when emotions do not follow up, the wound has no way to heal.
This system works. Some time ago, a girl, Zosia, was born. She lived two hours. Her mother sent me a message about Zosia that she lived for two hours and that she would like to thank you very much for taking care of the hospice, that she was fantastic. I think you can face the loss of a child and think that way. Because if the father of a child who died says that even though the son lived for a few hours, he actually made him a father. He could touch it, hold it in his arms. The child died, but it won’t change the fact that he has become a bit different because he has touched his fatherhood. That is why we want to get involved in the perinatal hospice, because we feel that something good is happening.
The government is preparing a law on the perinatal system *. What do you think about it?
Hospice for children has had its forum for several years – the National Forum of Pediatric Palliative Care (OFPOP), which brings together the majority of hospices in Poland, all large units operating in Poland. At the end of last year, we met with representatives of the ministry regarding the bill. As a forum, we have developed a consistent position. Those who have not lived through such a story with their family do not know what we need, where are the difficult moments. I do not lose hope that the people working on the creation of the law wanted to listen to us.
* The draft regulation will be forwarded to the Government Legislation Center ». Three ordinances, amending the existing regulations on: guaranteed services in the field of palliative and hospice care, guaranteed services in the field of hospital treatment and the list of medical devices issued on request, are to be published to the Act on Support for Pregnant Women and Families “For Life”. PAP was informed by Milena Kruszewska, a spokeswoman for the Ministry of Health.
The first of them introduces the so-called package of benefits guaranteed perinatal palliative care. The benefit is to ensure the continuity and coordination of care for a pregnant woman with a fatal fetal defect.
According to the draft ordinance, in order to benefit from perinatal palliative care, it will be necessary to submit a medical referral that will confirm a lethal fetal defect.
Such a defect is a developmental disorder that leads to spontaneous abortion, premature birth, intrauterine death, premature death of a live-born child, regardless of the treatment used, as well as developmental disorders qualifying for legal termination of pregnancy.
Pursuant to the regulation, patients covered by perinatal palliative care are to be guaranteed the right to: medical and psychological advice and consultations, provided at a palliative medicine clinic, a home hospice for children or an inpatient hospice.
Care for the patient is to be coordinated, which means ensuring cooperation with a maternity hospital, as well as a stationary or home hospice for children, where it will be possible to care for the child after possible discharge from the hospital ward.
The regulation also specifies requirements for medical personnel who are to provide perinatal palliative care. For example, doctors who deal with it, specialists in paediatrics, neonatology, perinatology, pediatric neurology, pediatric oncology and hematology, anesthesiology or pediatric surgery must have a documented experience of at least two years of work experience in palliative care and at least one year of work experience in a center dealing with perinatal palliative care.
Detailed requirements regarding education and work experience are also imposed on psychologists, psychotherapists and psycho-oncologists who will provide perinatal palliative care.
The healthcare provider providing perinatal palliative care will have to have at least three years of experience in pediatric palliative care.
According to the regulation, perinatal palliative care will be provided until the 28th day of the child’s life.
As stated in the explanatory memorandum to the regulation, there are currently no guaranteed services ensuring the continuity and coordination of care for a pregnant woman with a fatal fetal defect. The introduction of such a service is to enable the patient to “make an informed decision about the continuation of pregnancy”.
The evaluation of the service is planned at the earliest in two or three years, and the measure will be the data whether and by how much the “number of termination of pregnancy due to medical indications has decreased”.
On the other hand, the draft regulation on guaranteed hospital treatment aims, inter alia, at support for women, “especially mothers of premature and sick children, in starting and maintaining lactation” by increasing the availability of breast pumps and refrigerators for storing breast milk in neonatal and obstetric departments.
The draft on the list of medical devices issued on request regulates the right to reimbursed medical devices for patients under 18 years of age who have been diagnosed with “severe and incurable handicap or life-threatening incurable disease”, which arose in the prenatal period of development or during childbirth.
The ordinances are part of the “For Life” Act, which entered into force on January 1, 2017. The Act stipulates, inter alia, that due to the birth of a living child with a severe and irreversible handicap or an incurable life-threatening disease that arose in the prenatal period of the child’s development or during childbirth, you are entitled to a one-time benefit in the amount of PLN 4. zloty. The family assistant is supposed to be the guide of the family around the support system, whose task will be to coordinate the available help. The act is also intended to facilitate access to health services, including perinatal hospices.
The act is accompanied by a comprehensive program “For Life”, which is to guarantee families raising disabled children, among others 120 hours a year respite care, preferences in the “Flat Plus” program or easier access to rehabilitation. On December 20, the government adopted a resolution establishing the program, which entered into force at the beginning of the year.