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PALIAŢIA, Vol 7, No 4, October 2014 PALIAŢIA, Vol 7, No 4, October 2014 ISSN 1844 – 7058 CONTENT EDITORIAL Who cares? All care! WJA van den Heuvel ORIGINAL PAPERS The impact of the presence of exulcerate skin tumors in patient’s lifestyle Babeş G CLINICAL LESSONS Legal and ethical aspects during the treatment with opioids Crişan ES Non-Hodgkin lymphoma in HIV-infected patients Draghicenoiu-Neagu R MANAGEMENT Management of fatigue in palliative care patients Aracs Tamaș L COMMENTS, DISCUSSION The influence of stress and mental illness of family members on a terminally ill patient Căruntu A NEWS The picture on the cover: Venice 3 from unknown Romanian artist 2 PALIAŢIA, Vol 7, No 4, October 2014 EDITORIAL Who cares? All care! Prof Dr Wim JA van den Heuvel, Chairman of Editorial Board of PALIAŢIA For most families taking care for a terminal ill patient is a difficult task, but also one which is by most families - executed with love and patience and is seen as part of familial duty. However, if the family is unable to execute such a task because of disease, mental or physical disabilities, the palliative care team need additional support, as is argued this issue of PALIAŢIA. Psychiatric consultation is recommended in some cases but not always easily accepted by families. How to deal with such situation? Psychiatric or social or psychological consultation may not only be important for family members, but also for the patient. Not all persons can cope with the (side) effects of the disease/treatment and/or with the awareness of terminal phase of the disease, as is also shown in this issue of PALIAŢIA. But again, the question has to be answered: how to deal in such situation? Whose voice, whose expertise, whose experience should prevail? Palliative care is a philosophy, a way of looking at life and death, as well as a structured way to deliver care and support. At the end of life, needed medical and nursing skills are more than careful diagnosis, effective treatment, good care, and efficient management. In the case of palliative care, medical and nursing skills are not directed to cure, but to support and comfort. Such support and comfort require a wide variety of skills and a lot of experience (prevent nausea, treat pain, appropriate food, good sleep etc.), but above all interest in human beings as such (emotions, communication, involvement, information). Because human beings are complex, maybe not biological, but at least psychologically and socially, all expertise on human beings is welcomed in a palliative care team, including those of families and volunteers. This 'all-inclusive' approach is sometimes forgotten when professionals 'discover' the need for care in terminal ill patients. A psychiatric palliative care unit or a spiritual palliative care programme denies the interdisciplinary and human character of palliative care. Sometimes, engaged care professionals are not aware of this denial, they only want to do the best. The best care we can deliver is care we take care for together. 3 PALIAŢIA, Vol 7, No 4, October 2014 ORIGINAL PAPERS The impact of the presence of exulcerate skin tumors in patient’s lifestyle Gabriela Babeş, nurse, competence in palliative care, Hospice ‘’Casa Speranţei’’ Braşov, Romania Address for correspondence: e-mail: [email protected] Abstract Objectives: This study aims to detect changes caused by the presence of psychological problems in oncology patients with exulcerate skin tumor. The research objectives were: - to describe the perception of quality of life; - to analyze the importance of information and communication about diagnosis and prognosis; - to compare the perceptions, attitudes, behaviors and reactions of patients with exulcerate skin tumors; - to draw conclusions and comparisons with literature on how the presence of tumor exulcerate skin tumors change the quality of life for the patient. Material and methods: The research was executed with 5 patients with exulcerate tumor oncology, staying for palliative care in Hospice "Casa Speranţei" Braşov, Romania. Interviews were audio recorded. After transcribing verbatim texts were coded and thematic analysis was done. Analysis of the data was achieved by centralizing information from the transcript of the interviews. To review the literature the following keywords were used: cancer, exulcerate malignant wounds, skin ulcer, palliative care. Most sources were articles published on the internet. Results: Processing of information obtained in the interviews led to the synthesis of 7 domain (communicating the diagnosis, prognosis, the impact of the presence on changes in lifestyle, relationship with family, religion, and death). One area is directly linked to the presence of exulcerate tumor. What affects the lives of patients is the existence of advanced cancer. As long as the exulcerate tumor is properly cared, i.e. there are no foul-smelling, the pain is the controlled and the patient is not immobilized. These patients find resources to accept and adapt to a modified body image. After reviewing the literature, I realized that a key mediating factor, related to coping with the disease, is awareness of the patient about the disease and the family's ability to understand and support the patient in this major test of his life. Drawing on the narratives of patients affected by cancer we found that the disease can be an instrument of self-discovery or late self-development in some cases. Conclusions: The literature on the management of malignant wounds is growing, but still much of it is fragmented and relies mainly on case studies and the expression of opinions of specialists. 4 PALIAŢIA, Vol 7, No 4, October 2014 As a result, there is a lack of comprehensive formal guidelines or solid evidence on which to develop a basic practice. This study identified the importance of family and community in supporting patients. Acceptance by them of changes in body image and taking into account the role that the patient had before in the family and community contribute to quality of life. An informed patient will have a better outcome of the disease and live more in balance with family and friends. Key words: exulcerate tumors, cancer, palliative care (Full text in Romanian) 5 PALIAŢIA, Vol 7, No 4, October 2014 CLINICAL LESSONS Legal and ethical aspects during the treatment with opioids Crişan Elena-Simona, MD, internal medicine, competence in palliative care, Department Palliative Care, Nova Vita Hospital Târgu Mureş, Romania Address for correspondence: e-mail: [email protected] Abstract Objectives: Empathy and responsibility towards the patient and society can sometimes lead to difficult decisions for the medical staff. While the patient is a person with whom interpersonal relationships are established, the concept of “society” is abstract but equally important. Material and method: 27 year old patient, admitted in the hospital and diagnosed with gastric carcinoma. Also depressive episode, cutaneous metastases, bone metastasis, in the retroperitoneum, left renal hilum, mediastinum, hepatic hilum, celiac trunk. To control the symptoms, palliative treatment with morphine was necessary. In Romania, the law obliges the doctor to inform the patient that he is not allowed to drive while on treatment, and to inform the road traffic authorities about the treatment, by written notice. Conclusions: The consequences which are related to medical treatment are often neglected, because the legal aspects are not known and/or ignored. However, the possible criminal consequences accrue to the physician. A patient with serious, terminal illness is usually exempt from penalties if involved in a car accident. Key words: legal liability, opioids, palliative care (Full text in Romanian) 6 PALIAŢIA, Vol 7, No 4, October 2014 Non-Hodgkin lymphoma in HIV-infected patients Ruxandra Draghicenoiu Neagu, MD, paediatrics, the National Institute for Infectious Diseases “Prof. Dr. Matei Balș”, Bucharest, Romania Address for correspondence: e-mail: [email protected] Abstract Compared with Non-Hodgkin lymphoma in the general population, HIV infected patients have high rates of stage IV disease with B symptoms and sparse node involvement. Diagnosis is made by biopsy, usually required. Initial response rates are 50-60%, but long term prognosis is poor with median survival <1 year. The prognosis is significantly better with HAART (highly active anti-retroviral therapy). Palliative care is important for the patients with chemotherapy. Pain, anxiety, sleep disorders are frequent found in these patients. Key words: imundepression, lymphoma, pain, HIV (Full text in Romanian) 7 PALIAŢIA, Vol 7, No 4, October 2014 MANAGEMENT Management of fatigue in palliative care patients Loredana Aracs Tamaș, MD, oncologist, competence in palliative care, Emergency Hospital Satu Mare, Romania Address for correspondence: e-mail: [email protected] Abstract Fatigue is a multidimensional phenomenon that develops over time, diminishes energy, mental ability, and psychological condition of cancer patients. There are multiple scales that assess fatigue. One of the easiest is ESAS scale. The possible interventions in the treatment of fatigue are divided into: non-pharmacological (physical activity, acupuncture and acupressure) and pharmacological (bupropion, dexamethasone, dexmetilfenidat, methylphenidate, modafinil, erythropoietin, ginseng). Physical activity and acupuncture show a more pronounced reduction in fatigue compared to acupressure. Bupropion has proven efficacy in non-depressed patients compared to the depressed. Dexmetilfenidatul produces significant improvements in fatigue among patients previously treated with chemotherapy. Regarding methylphenidate we found two articles in antithesis. Patients with severe fatigue received modafinil treatment, while patients with moderate or mild fatigue not. The number of patients in the ginseng group perceived more benefit and were more satisfied with ginseng treatment compared with the placebo group. Increases in serum haemoglobin were associated with significant improvement of fatigue. Dexamethasone is more effective than placebo in improving cancer-induced fatigue and quality of life. In conclusion, there is a small number of randomized controlled trials, and a small number of studies that address the effectiveness in the treatment of fatigue, but the results were positive, which offers further opportunities to improve the quality of life of cancer patients. Key words: fatigue, cancer, scales, intervention, quality of life (Full text in Romanian) 8 PALIAŢIA, Vol 7, No 4, October 2014 COMMENTS, DISCUSSION The influence of stress and mental illness of family members on a terminally ill patient Adriana Căruntu, palliative care trainer, director Center of Palliative Care ''Sf. Nectarie'', Bucharest, Romania Address for correspondence: e-mail: caruntu.adriana @ yahoo.com In recent years there has been an alarming increase in cases of mental illness which affects the population of Bucharest. The first step in developing such a condition is the existence of multiple stress factors (low income, lack of employment, chronic disease in the family) that can lead to depression which is not treated in most cases. Depression is the starting point to trigger other serious mental illnesses. Family members of a terminally ill patient who have psychiatric illnesses may be a factor affecting both the patient in the last days of life as well as the palliative care team. Patients with psychiatric disorders cannot care effectively and rationally for terminally ill relatives that need care. Communicating with these family members is difficult. Mental disorders lead to false vision about the state of health of the hospitalized patient. The medical team, when it finds this kind of family members of a terminally ill patient, should adopt a particular way of communication that does not lead to conflicts or situations that ultimately affect the patient. It is recommended that such family members are evaluated by a psychiatrist. I therefore propose the inclusion of a psychiatrist in a palliative care team to support family members with psychiatric disorders. Key words: palliative care, depression, mental illness, communication (Full text in Romanian) 9 PALIAŢIA, Vol 7, No 4, October 2014 NEWS WONCA recommends toolkit for the development of palliative care in the community WONCA (World Association of Family Doctors) website (http://www.globalfamilydoctor.com) published a toolkit developed by the EAPC in liaison with WONCA to help, support, and guide individuals and organisations in Europe seeking to further develop palliative care services in primary care settings. Development of palliative care in the community is important because more patients will benefit from palliative and end-of-life care in that way. To realise palliative care in the community GPs and nurses have to work together and will need training and support by specialist palliative care teams, as was developed in Romania by PACARO (see Compendiul de îngrijiri paliative la domiciliu). Through primary care effective palliative care may be realised because it reaches patients with all life-threatening illnesses, may start early in the course of life-threatening disease, and can meet all dimensions of need: physical, social, psychological and spiritual. A remarkable shortcoming in the WONCA reference is that the title is 'Cancer and palliative care', while more and more patients with non-oncological diseases need palliative care. Advance care planning on end-of-life care A systematic review on advance care planning was published in Palliative Medicine (http://pmj.sagepub.com/content/28/8/1000). Advance care planning is the process of discussing and recording patient preferences concerning goals of care for patients who may lose capacity or communication ability in the future. This will potentially improve end-of-life care. However, there are different types of advance care planning and they have different effects. But there is evidence that advance care planning affects quality of end-of-life care positively. It need further development, also in primary health care. The 14th World Congress of the EAPC This congress will be held in Copenhagen, May 8-10, 2015. Deadline for abstract submission is 15 October 20014. The conference will be build on submitted abstracts. For this reason the abstract deadline must be set early. There will be two types of presentations: poster presentations and oral presentations in parallel sessions. 10