How
often have you heard that cry?
I
recently saw a patient with severe back pain. He had previously had surgery for
a spinal tumour. He’s now very frustrated because he feels that something is
badly wrong but will have to wait for tests to show the diagnosis.
Today
I also saw a patient who does not have a diagnosis for her multiple aches and
pains. She is waiting to see a specialist and is angry because we don’t
know what’s wrong with her. I feel it is the emotional problems from her past
and difficult key relationships that make her as she is, but she doesn’t accept
this.
The
third patient that I saw today has difficulty swallowing and tests to rule out
cancer or a stricture have all been negative. She is an anxious lady who is
avoiding going out because of the symptoms and I feel she has anxious
depression. She does not agree with this. Suggesting that physical symptoms are
caused by psychological causes is a sensitive area and often misunderstood as
“The doctor said it was all in my mind.”
This
sort of problem is tricky to manage. I will have to work to win her trust and
then gently explore the issues hoping she will come to recognize that it is her
nerves that are causing her problems - it may take years.
Both
patients and doctors find it very difficult to cope with uncertainty of
diagnosis and they like to know what is happening and why with their own
bodies. But they commonly hear from patients the cry of “The doctor didn't know
what was wrong with me…”, This is sometimes expressed as a triumph for the
patient rather than a failure in the doctor. Sometimes it expresses
disappointment, confusion and anxiety.
Dealing
with patients who have unexplained medical symptoms is really challenging and
happens in family medicine and anywhere that is the first place the patient
goes for advice. We all recognize the so-called ‘heart sink’ patients, who
often have very thick sets of notes and wander around seeking advice from many
health professionals in the search for the answer, hoping that someone will fix
their problems. These patients are usually unpopular with healthcare
professionals because they attend frequently, are usually demanding, but also
quite dependent and passive in their responses.
Unravelling
the long stories of their illnesses and life events that have led them to be in
the position they are now in takes time, patience and perseverance.
Peveler
(1997) showed that about a fifth of patients who consult their general
practitioner present with physical symptoms that the doctor thinks are not
explained by physical disease. Appropriate care of these patients represents a
substantial workload but if it can be done effectively it is a great service to
these patients. A paper by Ring et al (2004) looked at the consultations of 36
patients who were thought by their general practitioners to have unexplained
medical symptoms. They typically presented complex patterns of symptoms that
did not fit together medically. All the patients but 2 were offered a physical
treatment or a test. The patients didn’t actually ask for these, but their
behaviours made the doctor want to ‘fix’ things for the patient. They put
pressure on the doctor by describing their suffering in graphic and emotive
terms, emphasising the effect their suffering had on their lives, frequently
referring to friends and family as witnesses to their suffering
So
what do doctors feel when put in this situation? The doctors in the study felt
under pressure from the patient because of the emotive language used and the
depth of suffering presented by the patient. Although the doctors often tried
to make explanations, these were rapidly dismissed by the patient, leaving the
doctor with a deep desire to make the patient better but feeling helpless to
relieve their suffering.
Actually
it seems that these patients really wanted engagement with the doctor rather
than a physical explanation. They were crying for help, both emotional and
spiritual. Interestingly the doctors responded by giving a symptomatic treatment
or a test of some kind, thus continuing the deceit of there being a physical
cause for an emotional or spiritual problem.
So
why did these doctors not engage with the real problem? Is it a fear of
involvement with the patient at a deep level, lack of time or skill, or the
feeling that they will not be able to win however hard they try? I
do not blame them at all, and have felt under similar pressure many times.
However,
here are a few ideas of how I think these people can be helped….
·
Listen without judgement to the whole story of the problem.
·
Believe the patient, they do not usually lie, but you may
not understand them easily.
·
Be careful not to make assumptions too early and miss
serious disease.
·
Try to gain an impression of what sort of person the patient
is and how and why their background influences their reactions.
·
Work to gain trust… be faithful in the relationship and
never promise what you cannot deliver or where there is no evidence of benefit.
·
Say it as it is…if you don’t know what is going on, then do
not pretend that you do. Be honest.
·
Explain why stress anxiety and depression can cause physical
symptoms.
·
Hear the concerned witness of family and friends; they
usually wish to help.
·
Reflect your emotional and spiritual diagnosis back to the
patient and hear their response. The spiritual problems tend to be to do with
close relationships, and may involve guilt, loss, jealousy, rejection and lack
of love. These will frequently continue to cause symptoms without a
relationship with God with whom they can share and ask for healing.
·
Bring in someone with special knowledge of emotional or
spiritual issues when necessary.
·
Don’t expect a quick fix… This sort of healing takes time.
Remember
that despairing patients will make you feel despairing, confused patients will
make you feel confused and anxious patients will make you feel anxious. Be wise
and think about your responses before you reach for a quick fix.
The
interesting thing is that people with a faith are used to uncertainty. The
definition of faith is to believe in something for which you have no scientific
evidence. Our acts of faith help us to accept uncertainty. If our faith
involves expecting a loving and positive outcome from a God who cares for us
whatever happens, then we believe it all works for good and can live in
uncertainty with hope.
Can
you give these needy patients time, patience, faithfulness, love and hope? Can
you help them to trust you and to trust God?
Ros Simpson
References:
Peveler et al. Medically Unexplained symptoms in
primary care ; a comparison of self reported symptoms and clinical
opinion. J Psychosomatic Research 1997, 42: 245-252.
Ring
et al. Do Patients with Unexplained physical symptoms pressure GPs for somatic treatment?
A Qualitative study. BMJ; 2004 :328: 1057-1060