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Table of Contents

    Topic review

    Palliative Care

    Subjects: Others
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    Definition

    For EAPC, palliative care is the active, total care to improve the quality of life of patients, whose disease is unresponsive to curative treatment. It takes a holistic approach, addressing physical, psychosocial and spiritual care, including the treatment of pain and other symptoms. Palliative care is interdisciplinary in its approach and encompasses the care of the patient and their family and should be available in any location including hospital, hospice and community. 

    1. Introduction

    This interdisciplinary approach addresses patient, family, and community needs, affirms life, considers death and dying as a normal process, and aims to achieve, support, preserve, and improve, as much as possible, the best quality of life until death[1]. As people are living longer with an increased disease burden, many patients will need primary, secondary, and specialist palliative care. Palliative care is a public necessity[2][3] and a human right[4], meaning that people have the right to live free of cruel and degrading side-effects of treatment, the right to nondiscrimination and equality/equal access, as well as the right to information.

    Every year, 1.5 million Americans die in palliative care units (60%), and there are many others who meet the admissibility criteria for these units but are not admitted because of stigma, fears, and misinformation linked to end-of-life care. Patients with an advanced disease receive palliative care very late in their illness course, probably due to fear and stigma attached to palliative care[5]. As palliative care develops further, patients and their families will benefit earlier on from such care.

    2. Dispelling Misconceptions about Palliative Care

    There is evidence in the literature about the benefits of discussing and dispelling misconceptions about palliative care, as these affect the care and quality of life of people in need of such care. Access to palliative care is also considered an important issue to reduce the global cancer burden by the year 2025[6] and improve the quality of life of patients and families. The Union for International Cancer Control published a declaration with the goals to be achieved by 2025, one of which is to dispel myths and misconceptions about the disease and reduce the associated stigma[6].

    Several studies have assessed knowledge about palliative care in healthcare (HCPs) and nonhealthcare professionals (NHCPs). Lack of such knowledge is associated with myths and misconceptions, which lead to low referral rates and misuse of such services. There is a low level of knowledge among the general population[7][8][9][10]. There is also poor training in palliative care among HCPs. This is considered one of the biggest barriers to promoting the quality of palliative care[11][12] and, therefore, inclusion in the curricula of HCPs is indispensable[13].

    Several authors have highlighted the common myths, misconceptions, and superstitions attached to palliative care in several countries, which are linked to poor knowledge by patients, families, and HCPs (especially nurses and doctors)[5][14][15][16][17][18][19][20]. Common myths frequently associate palliative care with a loss of hope for patients, who are merely waiting to die, when nothing more can be done. Consider palliative care for cancer: it is normal to expect and tolerate pain at the end of life. Other misconceptions are related to symptom control, such as the use of oxygen to relieve dyspnea and prolong a patient’s life. There are also misconceptions regarding the management of pain and other symptoms, particularly those related to morphine, the inevitability and normality of pain, as well as nutrition and hydration in palliative care[15][17][18]. Other myths refer to communication, such as the conspiracy of silence or talking about the prognosis and discussing the place of death[5][14][15][16][17][18][19][20].

    This entry is adapted from 10.3390/ijerph17134630

    References

    1. Stinne Glasdam; Frida Ekstrand; Maria Rosberg; Ann-Margrethe Van Der Schaaf; A gap between the philosophy and the practice of palliative healthcare: sociological perspectives on the practice of nurses in specialised palliative homecare. Medicine, Health Care and Philosophy 2019, 23, 141-152, 10.1007/s11019-019-09918-2.
    2. Breitbart, W. Palliative care as a human right: Update. Palliat. Support. Care 2011, 9, 345–349.
    3. Shrivastava, S.R.; Shrivastava, P.S.; Ramasamy, J. Palliative care: An integral component of human right to health. Int. J. Prev. Med. 2016, 7, 15.
    4. UN Advocacy on Palliative Care as a Human Right: A Public Health Fact Sheet . International Federation of Health and Human Rights Organization. Retrieved 2020-9-16
    5. Spengler, M.; Debunking Hospice Myths. Cty. Bus. J. 2015, 15, 21, .
    6. World Cancer Declaration . Union for International Cancer Control [UICC]. Retrieved 2020-9-16
    7. Alkhudairi, H.M. General public awareness, knowledge and beliefs toward palliative care in a saudi population. J. Nat. Sci. Med. 2019, 2, 48–53.
    8. Benini, F.; Fabris, M.; Pace, D.S.; Vernò, V.; Negro, V.; De Conno, F.; Orzalesi, M. Awareness, understanding and attitudes of Italians regarding palliative care. Ann. Ist. Super. Sanita. 2011, 47, 253–259.
    9. Hirai, K.; Kudo, T.; Akiyama, M.; Matoba, M.; Shiozaki, M.; Yamaki, T.; Yamagishi, A.; Miyashita, M.; Morita, T.; Eguchi, K. Public awareness, knowledge of availability, and readiness for cancer palliative care services: A population-based survey across four regions in Japan. J. Palliat. Med. 2011, 14, 918–922.
    10. McIlfatrick, S.; Hasson, F.; McLaughlin, D.; Johnston, G.; Roulston, A.; Rutherford, L.; Noble, H.; Kelly, S.; Craig, A.; Kernohan, W. Public awareness and attitudes toward palliative care in Northern Ireland. BMC Palliat. Care 2013, 12, 34.
    11. Aldridge, M.; Hasselaar, J.; Garralda, E.; van der Eerden, M.; Stevenson, D.; Mckendrick, K.; Centeno, C.; Meier, D. Education, implementation, and policy barriers to greater integration of palliative care: A literature review. Palliat. Med. 2016, 30, 224–239.
    12. Smets, T.; Pivodic, L.; Piers, R.; Pasman, H.; Engels, Y.; Szczerbińska, K.; Kylänen, M.; Gambassi, G.; Payne, S.; Deliens, L.; et al. The palliative care knowledge of nursing home staff: The EU FP7 PACE cross-sectional survey in 322 nursing homes in six European countries. Palliat. Med. 2018, 32, 1487–1497.
    13. Gamondi, C.; Larkin, P.; Payne, S.; Core competencies in palliative care: An EAPC white paper on palliative care education. Eur. J. Palliat. Care 2013, 20, 86–91, .
    14. Sb Khoo; Facts and fallacies in palliative care. Asia Pacific Family Medicine 2003, 2, 143-147, 10.1046/j.1444-1683.2003.00073.x.
    15. Pennell, M. Time to debunk some palliative care myths. Int. J. Palliat. Nurs. 2004, 10, 577.
    16. Canadian Virtual Hospice. 10 Myths about Palliative Care. Available online: http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/What+Is+Palliative+Care_/10+Myths+about+Palliative+Care.aspx (accessed on 13 April 2020).
    17. Gallager, R.; Balddwing, C. Palliative care: Therapy for the living. BC Med. J. 2016, 58, 256–262.
    18. Valassi, E. Qué Son Los Cuidados Paliativos? Mitos a refutar. Centro Estudos Cuidados y Atención Paliativa (CESCAP). Available online: http://www.cescap.org/2016/01/26/que-son-los-cuidados-paliativos-mitos-a-refutar/ (accessed on 13 April 2020).
    19. Florida Hospice & Palliative Care Association. Hospice Myths & Facts. Available online: https://www.floridahospices.org/hospice-palliative-care/about-hospice/hospice-myths-facts/ (accessed on 13 April 2020).
    20. Naierman, N.; Turner, J. Debunking the Myths of Hospice. American Hospice Foundation. Available online: https://americanhospice.org/learning-about-hospice/debunking-the-myths-of-hospice/ (accessed on 13 April 2020).
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