Christine and the differences between how health-care professionals

Christine
Bryden was diagnosed with Alzheimer’s disease at the age of 46 in 1995 spanning
a three-year period of gradual decline. This essay examines her journey from
the time she was diagnoses and the effect her new-found spirituality had on her
emotional and physical wellbeing. This essay users her book, Bryden (2012) Who will I be when I die?, as
a case study to expose the issues surrounding faith and spirituality during
illness as well as other aspects such as the cultural differences of patients
and the differences between how health-care professionals may interpret medical
information and deliver this to their patients across cultural divides.

Bryden
explains that Dementia is the third biggest killer in the developed world and
that there are many people that don’t have a voice, she wanted to be an
advocate for them.  She wanted to dispel
the many myths and misconceptions about the disease, things which she
encountered when she was first diagnosed. She felt that one way of fighting the
disease was to write the book as it was a way of reflecting on her fears and
discovering courage, and another way to fight it was by finding faith (Bryden;
2012; p.13), she said she “couldn’t have coped without it” (Bryden; 2012; p.16,
p.17).  She goes on to explain that she also
wanted to capture her life experiences and share this with her daughters whilst
recording the journey with Alzheimer’s disease. Her strongest desire was to
maintain her dignity as she continued to decline and for those that loved her to
continue to love her for who she is and not for the memory of who she once was.
This strong desire of hers should be at the forefront of any patient centred
care plan which is discussed in more detail. 

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The
core focus of the essay aims to look at the difference between biomedical models
of health, holistic models of health and the combination of the two. One aim of
this essay is to analyse the effect faith and spirituality can have on the
healing process and whether there is a link from this holistic approach to a possible
placebo effect. This essay suggests that alternative methods of treatment are particularly
significant in today’s modern health care approach where different methods of
healing are becoming more and more popular. 
Graham (1999) provides an evidence-based argument for greater
integration of complementary therapies within the NHS as well as the importance
of alternative healing methods with particular reference to the arts and
health.

 

Bryden was diagnosed at a
very young age as being in the early stages of Alzheimer’s disease.  It took a further six months to have her diagnosis
(Bryden; 2012; p.16) confirmed after a second opinion was sought from another
neurologist and after undertaking many different kinds of tests. Bryden describes being
given the diagnosis which at the time meant a presumption of being unable to
speak, noting that she would need some “assistance with personal care soon” and
“maybe full nursing care within a few years” (page 16).  She describes her illness as “a loss of
memory, decreased intellectual function and deterioration of personality”. She
says there are 70 causes of dementia but that Alzheimer’s is the most
common.  She goes on to explain that it
is a physical disease in the brain which causes the brain to lose its functioning.

In further explanation, a
description from a biomedical journal (Burns & Iliffe; 2009) states that
Alzheimer’s is a neurodegenerative disease that worsens over time. An
early symptom is short-term memory loss but as the disease continues
symptoms such as language and speech problems occur, disorientation and mood swings become more prevalent,
whilst loss of motivation, not being able to manage self-care and behavioural problems become
obvious.  The cause of the disease is
poorly understood but other risk factors include a history of head injuries, depression, or hypertension with initial onset symptoms mistaken
for the normal aging process.  There are
no treatments available which stop or reverse the disease progression although
some treatments can improve symptoms.

As a contrast to the biomedical
journal description, an additional definition of the diagnosis is; Alzheimer’s disease is neurological and psychiatric
disorder, it is one of the most common causes of mental deterioration in the
elderly, “compelling evidence has been developed that acetylcholine-releasing
neurons, whose cell bodies lie in the basal forebrain, selectively degenerate.
These cholinergic neurons provide widespread innervation of the cerebral cortex
and related structures and appear to play an important role in cognitive
functions, especially memory. These advances reflect a close interaction
between experimental and clinical neuroscientists in which information derived
from basic neurobiology is rapidly utilized to analyze disorders of the human
brain” (Coyle, et al; 1983).

Bryden
describes the disease information to include loss of memory affecting jobs
because rarely remembering things later, difficulty doing some tasks such as
preparing a meal but forgetting to serve it, problems with language could
include forgetting simple words or the use of the wrong words therefore being
incomprehensible, forgetting time and place meaning not knowing where the
person is or how they got there, poor judgement on things like forgetting they
have a child in their care, problems with abstract thinking could be the
forgetting of numbers and what needs to be done with them, misplacing things
because they have been put in an inappropriate place such as a wallet in the
freezer, changes in moods and behaviour includes things like becoming
suspicious or uncommunicative and loss of initiative which means the individual
needs to be encouraged to become involved (Bryden; 2012; p.161).

In
the space of a few days, Bryden went from having a successful career as a
senior executive, a high-powered role in the offices of the Australian Prime
Minister, someone who worked long hours whilst juggling the demands of single parenthood
to being a pensioner and reliant on her children for help and support.  In the beginning she describes being “paralysed
by fear” (Bryden; 2012; p.13), she didn’t feel she was forgetful, only stressed
(Bryden; 2012; p.25). She encountered callous attitudes from medical
professionals and became exhausted as she endured further medical tests between
the first and second diagnosis. The company she was working for insisted she needed
to be seen by their own doctor who later confirmed her diagnosis and agreed she
was to medically retire as soon as possible, however an assessment panel on the
board of directors recommended that she return to work in a lower level
position (Bryden; 2012; p.57).  Bryden
had to seek legal advice and undergo further tests before the board finally agreed
to retire her.  Her entire experience is
what confirmed her decision to write her book and become a voice for the
disease.

Bryden says that if she had a choice to
be well again and not have spiritual growth, she would not hesitate to choose
that things remain exactly the way they were as she has “inner peace and
happiness”. She believes that if she didn’t have her faith and religion, her
life events would have remained the same but she herself would have coped differently
(Bryden; 2012; p.141).  She therefore
believes that her identity, her person, has changed in response to the illness,
this is in keeping with the thoughts of Kleinman (1989), where he advocates a
personalised approached to healing.  He
believes that Doctors should listen to their patient’s interpretations of their
illness, he uses case studies to describe this more open-minded approach to a
patient’s “illness experience” and believes that this gives patients the power
to manage their illness and shape their recovery.

 

Bryden explains that each Alzheimer
sufferer has slightly different experiences as their brains begin to decline.  Coming from a background based in scientific
research, and after having a very successful career path, she decided to attack
the disease with the same energy and determination that she put into her career,
work and projects (Bryden; 2012; p.19).   Looking at this and the fact that she has
defied all medical expectations about her life expectancy (Bryden; 2012; p.16),
we can hypothesise when trying to analyse her journey with this disease that
Phenomenology had a greater role to play than that of Positivism in this
instance. Phenomenology is the study of an experience, Clark (1994) discusses
this where the wholeness of the patient’s experience is thought of as opposed
to just one aspect or part.  Positivism
on the other hand is information taken from the experience and then interpreted
using logic to form a source of knowledge, Comte (1975).  Bryden was able to pull on her strengths from
an accomplished career and apply many objective perspectives to her treatment, perspectives
based on facts.  She achieved this by spending
time researching the disease and put measures in place to manage her illness,
for example she had a space by the bread bin where she placed her purse, car
keys or any important things of that nature. 
She kept a diary to track appointments, events and simple tasks for the
day.  This gave her more freedom and
independence than someone who may not have done this whilst living with the
disease, who without these mediums may have continued on a path of gradual
decline and confusion and who may then have become dependent on additional care
far quicker.  As her faith In God grew
and strengthened, she placed an additional subjective perspective on her
illness, this perspective was one which involved her emotions and feelings, one
which is often considered a controversial subject, but the strength of her
spirituality and having friends pray for her gave her additional courage and
strength that she was able to draw on. 
Having the balance between facing her illness from both a subjective and
objective perspective, I believe put her at an advantage, this is how she was
able to pull on all of her strengths and make sense of her illness from both a
logical and emotional point of view and to then put measures in place to fight
it the best she could. Bryden’s God and her church congregation became the
embodiment of what she calls her “miraculous improvement”, defying the medical
professionals and living beyond medical expectations. At this stage, it would
be worth considering the “Quest narrative” which Frank (1995) describes in his
book when people tell their stories in an effort
to make sense of their sufferings, they then find healing. Frank identifies
three narratives of illness; restitution (anticipate getting well again), chaos
(the illness stretches on endlessly without any relief) and quest (finding
insight as the illness is transformed into a way for the person to become
someone new).

 

Bryden encountered hostility, ignorance
and a lack of empathy from both medical professionals and her employer when she
sought help and support from them.  This
is relatively common practice as Lupton (2012) explains, he adds that it needs
to be recognised how Doctors and health-care professionals bring their own
cultural differences into any patient encounter.  She uses the example where in certain Asian
countries, people believed that some “illnesses were caused from an imbalance
of hot or cold properties in the body” or in earlier  years in Western culture, an illness may have
been a punishment by God “for their sins” or blamed on “having exposure to bad
air”. These sorts of views coupled with scientific teaching is what shapes the
health-care professional’s view and approach to their patients. She says whilst
it is important for the health care system to be sensitive to the inequalities
of the quality of health care that is experienced by persons from different
racial or ethnic backgrounds and to understand that each patient needs to have
“person-centred” care, that is must be remembered that they also bring a
concept of their own reality to the medical appointment such as their beliefs,
their understandings, their experiences, information gleaned from the internet
or media and how they have interpreted this.

Graham (1999) describes alternative
methods of healing and treatment in her book. 
She discusses both modern and ancient methods of healing from the East
as well as the West and identifies the links or similarities between them.  She explains the importance of using these
methods of healing alongside Western medicines. She
explains that Western Doctors have come to realise that the Eastern methods of
treatment are interdependent with one another, for eg. “hypnosis, meditation
and relaxation” assist with mobilising the energy required for healing.  She explains further that these healing
philosophies have been interdependent throughout history, across the cultural
divides.  She goes on to describe how the
traditions have evolved and how this can and should fit into the healing methods
of today’s modern practices.  She covers
a variety of matters such as visualisation, how the body’s chakras has an effect
on energy, colour and sound healing practices, and emphasises how each of these
mind-body approaches to healing have their place in a new pattern of health
care and treating the ill. 

We can no longer say
that certain attitudes or cultural beliefs exist only in certain parts of the
world because as people travel, immigrate or seek asylum in countries far from
their birthplaces, they bring these belief systems with them and therefore it
is important when working
with people from diverse backgrounds in a healing capacity to be aware of one’s
own belief systems and that of the patient and how this may impact on their
journey with their illness or disease.

If we are to consider
other ways in which to approach and treat patients and assist them throughout
their journey with their illness or disease, we should look “beyond the limits
of quantitative conclusions”, this being closed-ended data, as discussed by Saks
and