access on a progressive basis.8
Some of the core obligations noted in Table 2 are equally
important in palliative care, such as adequate nutrition,
shelter, sanitation and safe, potable water. It is also
important to focus on prevention of illness such as
immunization against HPV to prevent cervical cancer and
healthy lifestyle to limit non-communicable diseases. We
need to recognize that child health care should include
paediatric palliative care when necessary.
WHO public health strategy for palliative care
In 2002, Stjernswärd described the Ugandan success in
integrating palliative care into the country's health system
through engaging a government public health approach.11
Drawing on this success WHO recommends four "low-cost
foundation measures" for integrating palliative care into a
country's health system. These are 1) developing and
implementing policies for palliative care; 2) educating health
care workers in palliative care and creating awareness of
palliative care services within communities; 3) ensuring drug
availability, in particular essential analgesic medication; and
4) developing palliative care services within the public health
sector.12
Barriers to palliative care
Doyle and Woodruff, writing for the International
Association of Hospice and Palliative Care Manual of Palliative
Care13 describe a number of barriers to palliative care that
they classify as physician factors, patient factors, social
factors and access factors. Lack of education in palliative
medicine translates into lack of understanding of the role of
palliative care and lack of integration of palliative care into
clinicians' practice. One of the physician barriers described is
the lack of communication skills to address end-of-life issues.
There are a number of difficult conversations that doctors
may need to have as a patient's disease progresses and it is
important the doctors become skilled in having these
conversations so that patients and family members can be
fully informed about the illness and can make choices that are
appropriate to their circumstances and preferences.14
Doctors may be reluctant to refer patients to palliative care if
they do not have an understanding or belief in the discipline.
They may also be reluctant to hand over care to another
doctor and unfortunately may also be guided by a fee for
service structure and concerns about loss of income. Patient
factors that are a barrier to palliative care include denial in
patients that often hope or believe that the prognosis is
better than what they are told; they may have an unrealistic
expectation of the disease's response to treatment; there
may be disagreement about treatment options between
patient and family members; there is frequently a lack of
advanced care planning. Lack of informational access may be
as a result of patients or family members not being receptive
to the information or choosing to ignore the information
about palliative care services.13 Social factors that may be
barriers to accessing palliative care include poverty; living in
a rural community; being part of disempowered or
marginalized groups such as refugees, prisoners, the
homeless. Dissonance between the patient's culture and the
culture of the care service may be a barrier. Western
palliative care started with a strong Christian foundation and
many organizations still use Christian symbols that may deter
patients from other religions using the services. Palliative
care workers are trained to be sensitive to these social and
cultural issues and involving carers from the patient's social
and cultural community can help to overcome these barriers.
The role of the health care professional in improving
patients' access to palliative care
In terms of human rights, governments have three levels of
obligation: to respect, protect and fulfil these rights. But
people are not simply passive recipients of the benefits of
human rights, they can demand that their rights are fulfilled
and upheld. London describes agency as "critical to a human
rights approach"
15 and states that: "Rights alone are not
enough, but need to be coupled with community
engagement".16 Who leads this community engagement and
who encourages and supports the agency of the vulnerable
individual requiring palliative care? Chochinov eloquently
expressed the lack of agency afforded vulnerable individuals
requiring palliative care when he addressed the Canadian
Senate Standing Committee on Social Affairs, Science and
Technology: ''Unfortunately, in end-of-life care, we do not
have a vocal constituency: The dead are no longer here to
speak, the dying often cannot speak, and the bereaved are
often too overcome by their loss to speak''.17
Patients living with cancer and their family members are
very powerful advocates when they are encouraged and
supported to speak about their needs and demanding their
human rights. A particularly powerful series are the Life
Before Death (www.lifebeforedeath.com)
18 and Treat the
Pain (http://treatthepain.org)19 videos series setting out the
imperative for good palliative care and pain management.
Communities are also often quiet on the imperative for
good end-of-life care. Death is not a comfortable topic of
conversation or discussion and communities choose not to
consider the need for palliative care or ignore information
about palliative care because of this discomfort. These
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120 CANCER CONTROL 2014