Misbeliefs and reality about hospice and palliative care: A new initiative

An informative and eye-catching poster is a great way to disseminate your research findings. The 13th EAPC World Congress offered an appealing and informative range of posters on a diverse range of subjects.  Eight hundred and sixty-four posters were presented in two poster sets at the congress, including this one by Dr Katalin Hegedus, which was part of the ‘policy’ section. 

Dr Katalin Hegedus

Dr Katalin Hegedus

Dr Katalin Hegedus PhD, Semmelweis University, Institute of Behavioural Sciences, Budapest, Hungary, Hungarian Hospice-Palliative Association and member of the EAPC Social Media Team, describes the background to her poster that she presented at the 13th EAPC World Congress in Prague.

I started to collect the common misbeliefs about hospice and palliative care two years ago, based on my 20-year palliative experiences. Despite our best efforts, these misbeliefs, which slow down progress and cause problems at all levels, still exist among the lay public and healthcare professionals.

That’s why I am introducing an initiative to collect the common misbeliefs in different countries so that we can recognise and counter them with what is reality. By ‘busting the misbeliefs’ and presenting the true facts we can enable social and professional acceptance of palliative care.

Below (in red) you can see the most common misbeliefs in my country. Against these I explain (in green) how I would challenge these misbeliefs, using the data for Hungary.

Misbeliefs Reality 1,2,3
“It is needed only in the few last days of life.” As a minimum, it is needed in the last months of life.
“Hospice is a house where dying patients are put.” Hospice and palliative care is available in different settings: hospital, home, nursing home and specialist hospice and palliative inpatient unit.
“There is no difference between hospice-palliative care and long-term care.” Hospice and palliative care is an active, total and special care.
“There is no need to do more than hold the dying person’s hand.” Specialist palliative care is provided by specialised services for patients with complex problems not adequately covered by other treatment options.” 1: p285
“Hospice is equal to old age care.” Hospice and palliative care is available for patients of every age.
“In our country, hospice does not really exist.” In Hungary, more than 90 institutional and home hospice care services provide palliative care for over 7,500 patients.
“You have to pay for it.” It has been financed through the national health insurance system.
“It is administered only through charitable foundations.” It is administered through primary inpatient centres and home care providers.

Cancer, death and dying are still considered as taboo subjects. Consequently, caring for the dying is considered as equally taboo and seems to be one of the causes of the misbeliefs. If you would like to join this initiative, and share information about the misbeliefs and realities of hospice and palliative care in your country, please contact me

Meanwhile, I’m delighted to learn that the theme of this year’s World Hospice and Palliative Care Day is ‘Achieving Universal Coverage of Palliative Care: Dispelling the Myths’.

References
1. Radbruch L, Payne S et al: White paper on standards and norms for hospice and palliative care in Europe – part 1. Recommendations from the European Association for Palliative Care. European Journal of Palliative Care 2009. 16 (6): 278–289

2. Radbruch L, Payne S: White paper on standards and norms for hospice and palliative care in Europe – part 2. Recommendations from the European Association for Palliative Care. European Journal of Palliative Care 2010. 17 (1): 22-34.

3. The Hungarian Hospice-Palliative Association. 

Coming up…
Presentations from the EAPC 13th World Congress will soon be available to view on the EAPC website. We’ll let you know when they are online via posts on Facebook  and Twitter @EAPCOnlus

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6 Responses to Misbeliefs and reality about hospice and palliative care: A new initiative

  1. Carlos Centeno says:

    Dear Katalin, congratulacions for this original thought and realization!. I would be delighted seeing it as a paper for a Journal. This could be to contribute to further conceptualization of our fiel that is needed. Thanks again, Carlos

    • Dr Katalin Hegedus says:

      Dear Carlos,
      Thank you for your encouragement. I will try to collect a research group for this topic. Would you like to help us please?
      Best wishes,
      Katalin

  2. Reblogged this on Irishhospicelibrary's Blog and commented:
    A great post from EAPC Blog about that highlights the benefits of poster presentations and sets out to address some of the common myths surrounding Palliative Care.

  3. Dear Doctor Katalin Hegedus,
    all Your very important Research is concentrated in this sentence ‘Hospice and palliative care is an active, total and special care’. This is the heart of Your study, because Everyman can wonder what means a care which is active-total-and-special, at the same time. And Every Person in pain and suffering must be conscious that the care devoted to him can be active-total-and-special. That m u s t b e within The Fullness-and-Wholess of Everyman. My researches and studies are devoted to the PreverbalOncologicChildren, in Italy, in Europe and in the World, within the field of Non-Pharmacological-Care. I am a PreverbalChild’s aunt. My Little Giampaolo died in 2010, at 19 months, because of the AcuteLymphoblasticLeukemia. All my studies are to His Memory, in order to give to All The PreverbalOncologicChildren in the World What Giampaolo Never received.
    Luisella Magnani
    http://www.luisellamagnani.it.

  4. Dear Doctor Katalin Hegedus,
    the sentence which is the heart of Your Researches is ‘Hospice and palliative Care is an active, total and special care’. Everyman in pain and suffering m u s t k n o w that he can receive a care which is active-total-and-special, because That is within the Fullness-and-Wholeness of Everyman. My researches and studies are devoted to the OncologicPreverbalChildren, in the field of the Non-PharmacologicalCare. Studies and researches in Memory of my Little Nephew Giampaolo, Who died in 2010, at 19 months, because of the AcuteLymphoblasticLeukemia. I want to give to the PreverbalOncologicChildren in Italy, in Europe and in the World, All What my Little Giampaolo Never received.
    Luisella Magnani http://www.luisellamagnani.it

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