The practice of medicine in doctor’s offices and hospitals in the US and Romania focuses on specific complaints (e.g. chest pain, cough, sore throat, etc.) with the idea that the complaint will go away when the underlying disease is cured. We work very hard, using every means possible to cure the patient and relieve their suffering – even sometimes try so hard that we make the complaints worse and cause life-shortening complications (e.g. treating leukemia with bone marrow transplant can cause severe infections that cannot be treated).And some patients simply can’t be cured and their symptoms persist (e.g. abdominal pain from incurable cancer, shortness of breath from emphysema or from heart failure, and depression from the loneliness of growing old). Some patients have multiple complicated diseases or conditions and the combination makes them difficult to treat and cure. For these patients that we can’t cure, we often say “There is nothing more I can do.” We essentially abandon these patients, and turn back to the patients that we can help.

For the patient who is abandoned, the suffering continues until they die. A ‘new’ medical specialty has developed to address the hopeless suffering of these incurable patients. This ‘new’ specialty has deep, age-old roots in the compassion that we humans have in caring for one another. Doctors and nurses who work in palliative care accept that some diseases cannot be cured, but they do not accept the unnecessary suffering. Palliative care recognizes that the suffering is shared by the family, so the family and patient are treated as one. The family suffers from caring for someone who is always very sick; the patient suffers from symptoms such as pain, shortness of breath, nausea, weakness, and from the isolation of not being able to socialize with other people outside the home. Palliative care manages the symptoms so that there is no pain, no shortness of breath, and no nausea; the family is provided with respite from care; and the patient has access to daycare outside the home.

Unfortunately 90% of Romanians don’t know about palliative care, and those that do have a misconception about it. Since it is usually called into play after “nothing else can be done”, palliative care has the stigma of hopelessness, death, and dying. How can you continue to live without hope?

Children also have cancers that cannot be cured, and their families suffer the same sense of hopelessness. Some children are born with life-limiting illnesses from which they will die before reaching adulthood. As many as 80% of these children cannot walk or talk. In addition to the burdensome care that these children require, there is also a stigma associated with having such children. As a result, some of these children are abandoned to orphanages or to modern-day residential or foster homes.

Even though the palliative care of children and adults is distinctly different, the children with incurable cancer and the children with life-limiting illnesses and their families are all candidates for palliative care. However, the social stigma of hopelessness, death, and dying is just as difficult to overcome for children as adults.

The way that Romanians overcome this social stigma is the topic of my research. In my March, April, and May reports I will provide you insights into the palliative care of these children and introduce the unique way that the social stigma of pediatric palliative care is overcome in Romania.