Together with Cristina Petrozzi, CiaoLapo’s counselor and volunteer for Liguria, we are addressing a very important topic for CiaoLapo, namely the care of those who take care of parents affected by perinatal bereavement. We do this starting from some ideas on the concept of health, from some experiences shared with many operators, and from the awareness that the helping relationship is still a tool little used in the places of care, despite its potential and its virtuous effects for the well-being of patients and healthcare professionals.
If, instead of being a veterinarian, I were the men’s doctor, I would like a plaque with the definition of health printed behind my desk.
“Health is a state of physical, mental and social well-being and not the mere absence of disease.”
Mental well-being means a “state of emotional and psychological well-being in which the individual is able to exploit his cognitive or emotional abilities, exercise his function within society, respond to the daily needs of everyday life, establish satisfactory and mature relationships with others, participate constructively in environmental changes, adapt to external conditions and internal conflicts “(2001, www.salute.gov.it ).
According to this definition, the role of the healthcare professional is really a delicate one: he should be able to make very particular assessments of the health of his client, in which empathic attention and effective communication represent diagnostic and therapeutic tools that are not taught for preparation. no examination of the various degree courses for health professionals. Yet if a terminally ill patient is told by the doctor or by the operator who is assisting him that it is no longer possible to do anything for him and in this way he is discharged, or if a parent who loses a child during pregnancy is told, to console him. , that next time it will be better, it means that the medicine is not doing its job, that the operator is not treating the patient because he is not taking his emotional state into consideration at all. Because if it is true that health is not just the absence of disease, where it is not possible to heal, it is the health worker ‘s task to take care of, take care of what still responds to therapies, that is, the person. And to surrender to the impossibility of healing by leaving the patient alone to his fate is to abandon him: this is exactly the opposite of caring.
For this reason I decided to start taking care of the health workers of the maternal and child area where I live.
The deaths of children during pregnancy or immediately after birth are still a very unpredictable event, despite the latest research reported by the international journal The Lancet showing that there is an excellent room for improvement to reduce them also in Western countries.
And in most hospitals there are no protocols aimed at the specific care of bereaved parents. This is one of the weak links in the chain in which parents who are awaiting the birth of a child find themselves involved: if, for whatever reason, the long-awaited child does not survive, the management by health personnel of the painful path of welcoming death it’s a lottery game. There is currently no specific training of operators in the degree courses on the management of survivors of the death of a child in utero or immediately after birth. In my experience I can say that this training is also lacking in oncology operators, where deaths are certainly more predictable than in an obstetrics ward, yet very often they are managed with the same rejection, the same fear.
It is probably a cultural question. We have serious difficulties in accepting death, despite the fact that at school we are taught from elementary school that one of the characteristics that distinguishes living beings from non-living beings is that sooner or later they die.
Sooner or later…
Unfortunately, sometimes it happens that some children die before they are born.
It is really difficult to accept, so unnatural and biologically incomprehensible. Especially for a doctor whose role is aimed at reducing as much as possible all the obstacles that prevent you from living… a healthy life. And even more so for the doctor or the operator of an obstetrics ward whose skills are aimed at welcoming the life that is born and certainly not death!
But if it is true that health is not only the absence of disease and instead contemplates a state of bio-psycho-social well-being, then what remains of the parent, the painful part and not only the physical one, must be taken care of from immediately, even while medical procedures are in progress that confirm the diagnosis of death of the child and of childbirth in the case of mef or itg.
This type of assistance, essential to facilitate a good start in the physiological process of grief processing, does not consist of a technical service, but passes through the construction of an empathic relationship, which provides for precise communication skills and cannot be left to common sense. and to the good will of the individual operators. Everyone has their own story and experiences that strongly affect their way of dealing with death or the inability to heal a patient. And the patient cannot rely on the hope of finding an operator who has personally processed his experience with death in a healthy way. Because in the case of perinatal death, a traumatic event due to its unpredictability and unnaturalness, even the operators are potential victims. Victims, whose ability to manage pain, depends on the health of the primary victims, the parents.
I met several operators from a provincial reality: the number of births is not high and fortunately neither is that of perinatal deaths. But when it happens it is even more complicated because in the management of these cases we are not even supported by experience, as well as by training.
I always feel a great fear when I talk about perinatal death and the most frequent attitude that is described to me is just a typical reaction to this emotion: flight. In fact, many operators think that the best thing for parents who have just lost their baby is to be alone, in their room with the door closed! Of course, every now and then they stick their heads in to find out if they need something: but which parent would have the courage to tell the operator at the door or who looks down that he would like a word of comfort or reassurance that it wasn’t his fault, and that Has everything been done to save your baby?
The idea of death is so far removed from the minds and predictions of many healthcare professionals that it is easy to even be amazed when asking or proposing a meeting to discuss this topic in obstetrics. At the same time there is curiosity: maybe if they insist so much it is worth listening, I guess they say to each other, when in the end they agree to meet me. It has happened that patients who have lived through this tragic experience have been referred by the hospital to the psychology service of the referral clinic. But this process was not successful, the patient did not accept it as beneficial for himself and preferred to turn to the operators of CiaoLapo. This intrigues.
And then there are the operators who hope to find in our support a valid substitute for themselves in emergency situations: it has happened that we have received requests for help directly in the hospital; “Come and talk to the patient”, omitting the part: “I can’t do it”. And of course this is not possible, I am not a healthcare professional, I do not work in a hospital. I can support you, practitioner, as you take care of this grieving parent and help you manage the pain that this experience causes to resonate in you in an emergency. I can advise you on the most useful procedures so that your care role arrives also in this case in which the child did not survive, so that you can learn to manage these situations independently, so that you learn the most effective care protocol to help the patient and to support yourself in the difficulty of the moment.
I have never questioned the human difficulties of the health worker in the face of death. Not even when I was the victim. By character and training I always put myself in the shoes of the other: it is certainly not a good job to assist a patient who gives birth to a dead child. I understood the reasons why they talked about me in my presence without addressing me directly, or why they were always in a hurry to go through the procedures I needed. For me there was nothing more to be done from the medical point of view, according to the idea that the task of medicine is to heal.
Despite having understood, however, I suffered. My psychoemotional state was greatly underestimated, I felt very lonely and this is not good medicine by the WHO definition of health. I had to run for cover afterwards.
At the same time, in the meetings I had with the operators interested in learning about CiaoLapo’s activities, I perceived a great emotional participation, in the situations in which I was able to let spectators and not operators experience the emotions that come into play during these activities. traumatic events. I therefore saw a lot of emotion emerge during the images of the film Return to Zero or listening to the words of Tommaso’s father in a video that tells of his direct experience as a parent who has to face the birth of a dead child with his wife.
When the operator allows himself the time to listen to the pain of his client and what resonates in him, he is able to relate in a much more empathic way. Then a few gestures can become meaningful for him in the role of carer and therapeutic for his patient, such as caring for the child with respect and attention, to prepare him for the meeting with his parents; collect small memories such as footprints or little hands to keep in the memory box, take some pictures so that parents can keep the memory of the physical appearance of their child also in the future.
Because when the health worker takes care of his patient in all his parts, he is able to make sense of his role as a carer even when he cannot successfully exercise his technical skills. Good medicine doesn’t just save lives from death, it has a duty to relieve pain in all its forms. And in order to alleviate the pain of your clients, you need to contact your pain reliever to learn to distinguish it from that of your patient and find a time, not contemporary, to take care of both.
Cristina Petrozzi
Volunteer CiaoLapo onlus
