These are just some of the many responses we received
from our Editorial of 05/11/06
-
Diagnosis
Neurosis
A palliative
care consultation may be the direction to go, as it
helps to clarify the goals of care, the practical
needs of patients and families and the overall
impact of illness. A palliative care specialist can
be your loved one’s advocate in navigating the
complexities of the healthcare system and in trying
to make sense of the medical advice and treatment
recommendations, all the while benchmarking
decisions to what your friend defines as wellness
and meaningful care.
Palliative care
is a general approach that can be integrated into
the treatment plan for anyone facing a serious or
life-threatening illness. It also is a specialized
form of care delivered by a trained
interdisciplinary team. At Midwest Palliative &
Hospice CareCenter we take seriously our role of
positioning ourselves alongside patients and
families to provide support…to learn and understand
what their goals are in terms of treating and living
well with an illness. The illness does not
necessarily have to be immediately life-threatening
for a consultation with palliative care to be
appropriate. The consult may simply facilitate a
framework within which the patient and her doctor(s)
can make treatment decisions.
We wish your
friend well and trust that during this difficult
time she and her family will be able to connect with
a physician who is a palliative care specialist.
Martha L.
Twaddle, MD
Chief Medical Officer
Midwest Palliative & Hospice CareCenter
Glenview, Illinois
I don't have answers but, I
sure know what you are talking about. Meds my
mother needed damaged her liver, which resulted in
all kinds of conflicting problems and
prescriptions. She has seen so many specialists due
to her cardiac problems, anemia issues, high
cholesterol, arthritis, hardening of the arteries in
the brain - and it goes on and on. She even had an
unnecessary (extremely painful) bone marrow test
because no one could determine why she was anemic.
When it was all over, her specialist was surprised
that she wasn't taking an iron supplement. He told
her to do that and her problem disappeared.
Her cholesterol
medicine made her so weak she stopped eating and
drinking! Realizing her situation was going from
bad to worse, we took her to the hospital and I
think it saved her life. I think her primary care
doctor got so confused and frustrated that he just
threw up his hands and told her 'You are going to
die from something. What do you want it to be?!'
He took her off some of her medicine and stopped her
Coumadin for her heart. She still takes about 18
pills a day! I think they work against each other
but, what do I know?!
My mother is 78
and is married to my stepdad who is 83. Mother has
a neat red walker but, refuses to use it. They live
independently right now but, I worry about them in a
huge, old two-story family home that neither want to
leave. They have a lift chair to get up and down
the stairs. Someday they will have to sell the home
or remodel the downstairs so they can live entirely
on one floor. Mother is still tramping up and down
little wooden basement stairs to get back in a
corner to read the water meter!
N
Your relative’s experience is
not unique.
We went through 15 different doctors in two years
before my husband’s spinal cord injury was correctly
diagnosed and repaired. The ‘best guesses’ we got
ranged from multiple sclerosis to a tumor on his
spine. Some doctors just gave up and said they
couldn’t help him...which cruelly left us no where.
Meanwhile, he continued losing function becoming
more and more numb from the waist down until he
ended up in a wheelchair. Finally, one of those
radiologists that patients never meet read my
husband’s um-teenth MRI and discovered a flow void
indicating a vascular problem. One more doctor
later, my husband had his spinal fistula repaired
via an outpatient procedure and is slowly getting
feeling back into his lower extremities.
What lessons did we learn?
1)
Never stop looking until you find the physician that
is willing to take the time look at all your
symptoms, not just the symptoms that fall into the
physician’s specialty.
2)
Keep copious notes and records. Each physician visit
does provide a clue to your diagnosis even if their
individual conclusions are slightly off the mark.
3)
No matter how discouraged your loved one becomes, be
determined. (I repeatedly told my husband we’d go to
a hundred doctors if that what it took to get him
diagnosed correctly – and I meant it!)
4)
Ask around. Even after we got an idea of the cause
of his symptoms, my mother-in-law found our
neurosurgeon by talking to someone at her office who
had a friend that was an operating room technician
who knew a doctor locally who specialized in this
kind of surgery.
5)
Heinous surgeries should be a last resort. One
neurosurgeon wanted to open my husband’s spinal cord
‘just to look around.’
6)
Try to get second opinions from physicians in
different practices and hospitals. Physicians in the
same practice tend to look at things in much the
same way. You need as many different perspectives as
you, and your insurance, can stand.
7)
Find a physician that truly wants to work with you
(and your caregiver) in partnership to help you get
better. That doctor-patient dynamic has to be a team
effort. Worst of all are the doctors, particularly
surgeons, that tell you you are (fill in the blank:
foolish, irresponsible, etc,) for questioning their
judgment or wanting to get a second opinion.
8)
Unfortunately, there are doctors who are still
practicing that are just burnt out or have lost
their skills and are just going through the motions.
My opinion only – but we concluded 25% of all
doctors just shouldn’t be practicing either because
of burn-out or because their own self-interest makes
them poor physicians, 50% are adequate physicians
and are good starting points but fall down when it
comes to strong diagnostic skills (Does NBC’s
“House” come to anyone’s mind?) and 25% of
physicians are at their peak. You gotta kiss a lot
of… I mean, visit a lot of waiting rooms to find
those peak doctors.
Regards,
--Joan
