Pekerja perawatan paliatif sering melaporkan bahwa politisi, pers, sesama profesional dan bahkan masyarakat tidak tahu banyak tentang perawatan paliatif. Apa yang perlu mereka ketahui dan bagaimana kita memastikan bahwa mereka baik-baik saja diberitahukan?
Informing politicians
They should know about palliative care because
! it affects the people they represent
! it requires money over which they have some control
! it is an integral part of modern health care
! issues raised by it - quality of life, value of life, euthanasia - are important
issues in modern society
! issues related to the availability of opioids and other medications are
important issues in developing countries
They can be helped to know more about palliative care by
! establishing an All Party Parliamentary Palliative Care Group. Such
groups meet quarterly to hear a very brief talk, are given regular
briefings on all topics central to palliative care provision in that country
(funding, staffing, resources, opioid availability, etc) and sent an
information pack several times a year to keep them up-to-date.
! inviting every local politician to visit the palliative care units in their
constituency and attend all public functions.
! inviting the parliamentarians to open new buildings, launch new projects,
present prizes - so as to keep their names and the work of the palliative
care unit before the public
Informing the press
If kept well-informed the press can be the friends and allies of palliative
care not its critics or detractors
! they influence public opinion
! they influence politicians
! they can help to raise funds and public awareness
! they offer a platform to deal with key issues such as euthanasia, resource
allocation, and opioid availability
They can be helped to know about palliative care by
! being sent regular press briefings by a professional Press / PR Officer
employed by the National Palliative Care Association. This ensures high
quality briefings and saves individual units trying to prepare press
statements
! by inviting local and national press to all palliative care events, big or small
! by having a national panel of palliative care experts willing and able to
speak on radio or appear on TV when matters related to palliative care
are being discussed
! by inviting photographers to all public-interest events in a palliative care
unit
! by having press briefings, preferably chaired by someone with PR
experience, when new palliative care projects / services / courses are
being launched
! by keeping them informed of what is happening in the rest of the world of
palliative care. (There are few better incentives to improve services than
learning how much better other countries seem to be doing it)
Informing the Professionals
Fellow professionals need to know what palliative care is, how they can
access it, how it might or might not help their patients and how they
might practice it themselves
! there are often misunderstandings about what palliative care is. It is seen
as terminal care or geriatric care or care of the incurable or care of the
chronic sick or as being appropriate only to oncology patients or a
dignified and well-intentioned form of euthanasia.
They can be helped to know about palliative care
! by seeing the nature and effectiveness of palliative care when we are
called to see their patients. Beyond doubt this is the best demonstration
that can be offered
! by the quality of our correspondence about patients, our clinical
presentations, our professional papers in peer-reviewed journals and
our talks at conferences and meetings
! by being invited to visit palliative care units either as visitors or to advise
on patients or to attend ‘grand rounds’ or clinical meetings
! by the quality of our clinical and organizational audits and standard setting
! by the quality of published papers emanating from palliative care services
Informing the General Public and Patients
To many people hospice / palliative care is care of the dying. Being sent to
such a place is proof that death is imminent. Word gets round that the care is
good and the staff deeply caring but few people know what a high proportion
of patients are discharged home, how palliative care teams operate in many
general and specialist hospitals, and that doctors and nurses are increasingly
being taught it before qualifying. Even fewer will have heard of Day Hospices
and fewer still know what it costs to operate a palliative care service .
They can be helped to know about palliative care
! by hearing about it on the media, reading about it in the press
! by meeting people who have received it or whose relatives have received
it
! by reading explanatory leaflets about it in the offices of their family doctors
and in hospital waiting rooms
! by reading how they can help it financially in leaflets prepared for their
legal adviser’s offices
! by reading the special leaflets prepared for every patient, every visitor to
each palliative care service in the country