[acb-hsp] Losing Patience with Being a Patient

[peter altschul]

Losing Patience with Being a Patient

by Stephanie Stephens Van Posted on 12/6/2012 at 10:46 AM by 
Maureen Duffy

Head shot of Stephanie Stephens Van

Guest blogger Stephanie Stephens Van has lectured nationally on 
adapted crafts and leisure activities; adjustment to blindness 
and low vision; functional vision skills; and activities of daily 
living.  Stephanie is a Vision Rehabilitation Therapist, a Low 
Vision Therapist, and an adjunct instructor at the Salus 
University College of Education and Rehabilitation.  She is the 
author of A Day on the Road with Vision Rehabilitation Therapist 
Stephanie Stephens Van and Finding and Hiring a Driver When 
You're Blind or Visually Impaired.  Stephanie has a Master's 
degree in Blind Rehabilitation from Western Michigan University.

Why I'm Impatient

Recently, I went to an outpatient medical facility for routine 
testing.  Since this was the seventh hospital or outpatient 
facility I've endured this year, this particular process 
exhausted my last shred of patience.  I'm no longer patient when 
I'm a patient!

Most of the time I'll simply go with the flow.  When I don't feel 
well, I don't want to create a "teachable moment" just because 
I'm not on my A-game.  However, since I have low vision and thus 
have become an ever-visible advocate for the needs of persons 
with low vision and blindness, I felt there needed to be some way 
to address my growing impatience with the medical system's 
"status quo" regarding patients with disabilities.

After my latest encounter with the health care system, I decided 
that something had to be done for all of us with vision loss 
across this great land.  I felt confident that I wasn't the only 
person who has been the recipient of child-like treatment by 
medical and hospital personnel.

Here's the Problem

In my experience, health care providers range from (a) being 
overly solicitous to a long-cane-using, sunglass-wearing patient 
with low vision to (b) appearing not to notice the 
long-cane-using, sunglass-wearing patient at all.  Thus, more 
often than not, the patient (me, in this case) must resort to 
yelling, "Wait! Where are you? Where are we going?" as the health 
care provider sprints down the hall, expecting the patient (me) 
to follow -- and keep up!

My Recent Experience

Usually, I am a patient patient, self-assured and proud of my 
independence, but my most recent experience truly left me feeling 
"out of my element." From the moment I arrived at the medical 
facility, I was pushed ahead through doors, left in the dust 
while trying to follow someone down a hall, and - worst of all -- 
had my identity taken away as the nurses and the doctor refused 
me the chance to sign my own "permission to treat" form prior to 
the procedure.  I even suffered the humiliation of a nurse 
offering to undress me -- which I did not allow, by the way!

I know that medical facilities need to meet their daily quota of 
patients in order to receive insurance reimbursement.  I also 
understand the significant turnover rates of aides and per-diem 
staff, along with the long hours required of registered nurses 
and physicians.  I understand that training all staff in every 
in-patient and out-patient facility throughout this country may 
be a bigger-than-possible undertaking.  There will always be 
someone who misses the training provided in hospitals, 
rehabilitation facilities, and surgery centers because patient 
coverage is required at all times.

My Potential Solution

All of this got me thinking: What if I could hand a simple form 
to my health care provider to help him or her understand that 
patients with vision loss are not deaf, illiterate, or unable to 
dressstundress or sign our own names? What if I could hand my 
health care provider a commonsense form that was to the point, 
not overly wordy or time-consuming, and could provide the blind 
or visually impaired patient with a modicum of dignity?

Here is what I propose.  It may not be perfect, but I believe 
it's a step in the right direction:

FOR YOU: My Health Care Provider

I have a VISION IMPAIRMENT I can:

HEAR THINK SPEAK SIGN MY NAME ASK FOR HELP

I do not like to:

BE GRABBED LEFT IN UNFAMILIAR SPACES HAVE PERSONAL TASKS DONE FOR 
ME

I need you to:

IDENTIFY YOURSELF WHEN ENTERING MY PRESENCE INFORM ME WHEN YOU 
ARE LEAVING MY PRESENCE

I am a HUMAN BEING WHO DESERVES DIGNITY.

How To Use It

This sheet can be copied as many times as needed.  Take it to 
your personal care physician's or specialist's office for 
placement in your medical chart..  Hand it to the admissions 
office when you enter a health facility or hospital.  When you're 
admitted to a hospital, keep it near your bed for the culinary 
and custodial staff, technicians, and therapists.  After all, 
sometimes you just get plain tired of explaining everything all 
the time to everyone.