People, who work with adolescent have been paying increased attention to the problem of providing palliative care to children and adolescent. Palliative care is a complex of multidisciplinary services, which are provided to a person, who is seriously sick, regardless of the prognosis, regardless whether or not such a person is expected to die in a short period of time (Gelfman, 2008). According to numerous scholars, who have paid a lot of their attention to this problem recently, palliative care significantly improves the quality of life not only of the patients (Higginson et al, 2003), but also of their close relatives, friends and other care givers, moreover, such care is aimed at helping not only the patients themselves, but also the caregivers (Higginson et al, 2003).
According to some scholars, including Elsayem et al (2006), palliative care even influences the mortality rate within the hospitals. Some scholars, including Lynn (2004), particularly emphasize the importance of palliative care and its popularization all over the world, since there are too many myths, which surround serious diseases, which require person’s remaining in bed or facing other significant limitations in their life for a significant period of time, or, even more importantly, causing risk to a person’s life or even causing close death. It is important to create reasonable conditions for such a person to die in. And this is what palliative care specialists do. Palliative care is provided by a group of specialists, including practitioners, nurses, and psychologists and so on. And we managed to talk to one of the most outstanding specialists in the field of palliative care, a person, who is very well known in her sphere both in South Africa, where she resides, and abroad. This is Joan Marston, a Chief Executive of the International Children’s Palliative Care Network, a volunteer at hospitals. Joan has worked over 17 years with adolescents, providing them with palliative care, consulting governments and specialists, care givers and policy makers all over the world regarding the importance of proper palliative care. And she agreed to answer a few questions for this publication.
Joan particularly emphasized, that one of the most significant problems, related to palliative care for children is the advocacy for application of morphine and other medications on the level of the state. It is oftentimes believed, and this believe, unfortunately, is shared by the care givers and even some of the decision takers among the state authorities, that a child, who is receiving morphine, can become drug abusive. Which is very far from reality. But in her practice, she says, she does not only have to advocate for proper use of reasonable pain management medication, but she also has got to address a much wider spectrum of problems, mainly based on misunderstandings, people widely have regarding the death and the comprehension of death by children. It is oftentimes believed, that adolescents, when they suffer a serious disease, need to be surrounded by a narrow circle of deadly sad faces, lay still in a quiet dark room and avoid any motion. Instead Joan attempts to overcome this stereotype.
A number of authors have particularly emphasized, that the entire suffering and its management presuppose quite a different approach (Strang et al, 2004). According to these authors, the effectiveness of palliative care is measured through ability or inability of care providers to guarantee a safe way for the patient to deal with their distress. This includes both physical and psychoemotional states. This, in turn, is seen through the effectiveness of ddealing with particular symptoms and conditions, including pain, breathlessness and nausea. Nowadays medical workers and other palliative team members have learnt really well how to deal with pain and how to safely administer morphine and other drugs, while maintaining entire functionality of the patient. But spiritual symptoms and psycho-social symptoms go along with physical ones and are, at the same time much more complex to be treated and, thus, their treatment is not easy to be assessed. Luckily, in the majority of developed countries the process has already moved quite ways ahead, while in the developing nations the situation is not as great.
It is critically important, Joan says, to make the days of care quite active and happy days. It is important, that a patient, and this particularly refers to those patients, who are known to leave this world pretty shortly, would remain happy, would enjoy every moment of their life, would remain active and this is what palliative care is aimed, but also at explaining this all to the care givers, to the people in charge of the children, so that they would not suffer themselves and would not increase the sufferings, the adolescents have to go through. The same observation is shared by Strang et al (2004). Joan particularly emphasizes, that adolescence is a particularly complex age for palliative care. Care givers have special problems when dealing with their adolescent patients, because in order to provide the most effective care, they need to be open with the patients. Meanwhile, adolescence is not the easiest time, the time, when a child is tending towards hiding their feelings and emotions from the relatives. If this is complicated even more by the disease, the situation becomes even worse.
Joan works in a multi-professional team and uses multi disciplinary approach in her practice, based on significant theoretical workouts. Among other scholars, who work in this field it is particularly important to discuss the input made by Jayakrishnan et al (2012), who have paid special attention to the problem of increasing life quality for seriously sick people. For many people, who work with adolescents, and I am not an exclusion from this rule, the specialization is much narrower. It may be focusing merely on psychology or health or peculiarities of education. However, Joan particularly emphasizes, how important it is to stick to this very multidisciplinary model of work in order to remain effective in palliative care for adolescent. Even more this is true for her advocacy effort in the global context. This advocacy effort should also take into proper consideration gender, ethnicity and race, as factors, which influence the availability of high quality palliative care if needed. It is important to deliver the highest quality palliative services to the most vulnerable patients. Such are adolescents of color, children living in the third world countries and so on. At the same time, there may be inequality in access for high quality palliative care even among the patients living in developed countries, including the US. Researchers, who work in this field have been constantly reporting inequality in access for high quality palliative care. And this inequality is not merely based on the age, which is the most frequently reported factor. But race and ethnicity are also oftentimes becoming such factors. Ethnicity may become a bareer when medical workers simply do not properly understand the patients due to their belonging to ethnic minority groups. Race is subject to numerous risks about higher pain bareers in representatives of different races, the same refers to gender, as it is believed that male patients less suffer from pain than females. This is by far not full list of factors which need to be considered.
Certainly, throughout her outstandingly rich experience, Joan has changed her theoretical approach. First of all because Palliative care is a comparatively young sphere of work. And thus it is particularly dynamic in its development. Moreover, she herself has contributed a lot into the developing theoretical framework of palliative care. Thus, Joan seems to develop together with the multidisciplinary sphere of work, which is palliative care for adolescent.
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