by Sherry Ernst
My father died from decubitus last month at the hands of a nursing home. It
was horrible. He had stage IV decubitus that you could stick your fist in.
He was almost whisked off to the crematory before I intervened. I traveled
to the funeral home. After they pulled him out of the freezer, they brought
him into a small private room. I took it upon my self to turn him over and
saw three huge bandages. I removed them and was horrified. I almost
vomited but the grief won out. The pain he must have endured. There were
two holes in his hip that I could have stuck my entire fist in and I could
see his bone surrounded by a void where the skin, muscle, and many layers of
tissue used to be. No one would have ever known the extent of the neglect
he suffered if I had not looked at his backside. My father is not an
isolated case but instead I have found that he is the norm. I was planning
to take care of him myself at his home after he had his stroke but that is a
very long and very sad story. Needless to say I was helpless to his being
discarded into a nursing home. I have made it my personal lifetime goal to
make Decubitus a household word so that my father will not have died in
vain. I am a very motivated person and will carry on the fight until the
end of my life. There is a whole world out there, including seniors, that
is ignorant because of the lack of preventative advice or information
anywhere on decubitus. Our country needs to wake up and smell the coffee.
We treat the whales, dolphins and wild horses better than we do our
bedridden relatives and friends.
There is NO reason for one single person to develop Stage I, Stage II, or
Stage III decubitus to qualify for a preventative bed or other treatment.
The rain forests get more attention and pro-action than a bedridden person.
You know Decubitus is a flesh-eating-to-the-bone monster. It is ugly and
causes excruciating pain and agony. Our nursing homes and Veterans
Hospitals are full of Decubitus deaths. If I am aware of this, such a
person as you, are aware of this also. Other than all the pharmaceutical
companies that stand to lose from lack of sales of their expensive medicines
etc., what is standing in the way?
Pressure Reducing Support Surfaces Group II and III, are allowed a patient
only after the patient has a Stage III (full thickness tissue loss) or Stage
IV (deep tissue destruction) pressure ulcer according to Medicare policies.
This is inhumane! Why does some elderly person have to go through this
torture? It would be so simple for the code to be changed so that a serious
stroke victim that has been paralyzed for example with a 99% risk for
decubitus, can go right onto a Group III bed. God, let the poor elders at
least die without UNNECESSARY pain.
There is no DRG (drug related group) for a bedsore. No hospital patient is
ever assigned the primary diagnosis of decubitus. Few, if any, are ever
recorded as dying from their pressure wounds, yet many do. What doctor is
going to put on a death certificate that the patient died from decubitus or
sepsis from decubitus that equates to neglect. All the studies and studies
of studies are not accurate because of this. Medicare allows payment to
hospitals for rental of special decubitus preventing beds in Group II and
III only after the wound has developed and reached life- threatening
dimensions. Yet even when that stage is reached, few hospitals and doctors
will call for the therapy because it will cut into their profits and we both
know this. Isn't it true that Congress has designed a cost containment
system that insures the debasement of the patient unlucky enough to land in
a hospital that gives him or her a bedsore?
The National Pressure Ulcer Advisory Panel (NPUAP) is funded by two large
nursing home corporations that are the worst offenders of decubitus in the
country. It appears the are hypocrites.
It does not seem possible to imagine a greater insult than to have the
hospital or nursing home you depended on for care cause you decubitus. Then
the hospital or nursing home insists that you suffer with it until it
develops into a horrendous wound before the Support Surface II group that
would have prevented the ulcer in the first place is provided. I would be
much less expensive to get the right bed in the first place to save the
taxpayers huge amounts of money. You know the figures. A Group II and III
support in place is less expensive than treating the decubitus ulcer
especially with surgery for debridement.
Please forward to me anything that you might know to help me in my battle
against the monster Decubitus. It is too late for my father but is isn't
too late for the huge senior population that is coming up. We are going to
find ourselves in a crisis if something isn't done soon to educate the
public so that we can change the inhumane Medicare policies and change the
nursing home standards of practice by making them accountable for their
neglect.
Our senior population is reaching the highest numbers ever and by the year
2010 it is estimated that we will be in a crisis. There are the terminally
ill patients that are not going to recover -- but must lay somewhere on some
thing while they are dying. Why can't they have a support group III surface
to lay on whether ti be in a nursing home, hospital or home so that they can
die without the pain of decubitus. What would you want when you are the
patient in that hospital bed when you are dying?
How wonderful to be in the hands of someone that can get you a group III bed
because HCF had changed their Medicare reimbursement system on durable
medical goods. How horrible it would be to develop a stage III ulcer and
have someone come to you with an electrical device to stick in the gaping
bloody hole in your backside. These two scenarios are not possible now only
the latter with the TENS. I know what the majority of people would want for
their mother or father who are in their eighties and bedridden!
I have founded an organization called nodecubitus.com. Our mission is to
have the laws changed concerning nursing home neglect and hospital
neglecting the United States; our goal is to change the Medicare law
concerning preventative care with regard to the high-risk decubitus patient.
It is our organization's belief that preventative durable medical goods from
the Group II or III support surfaces are necessary to stop the decubitus
before it starts in these terminally ill patients that are inevitably going
to get decubitus without special treatment and support surfaces.
We, as concerned and compassionate human beings, need to all stand up and
shout, "We will no longer stand for the blatant neglect of our elders in the
hands of big profit nursing homes." If an animal is abused or a child is
abused there are laws mandating the report of the abuse. Not so with our
elders who are just as vulnerable as our pets and our children. In Florida
it is a law that you will go to jail or get a stiff penalty for harming an
alligator. We feel it is high time to acknowledge the seniors and give them
the same kind of protection that an alligator has.
Nodecubitus.com plans to educate, pass the word and stir up the dust of
indifference that the general population has for the neglect of our elders.
When someone neglects or abuses a vulnerable elder then they must be held
accountable for their action no matter whom they might be. We need to do
something to nursing homes that fail inspections time and time and time
again. It's time we shut down nursing home chains that fail government
inspections over and over again. They need to start putting some of those
big bucks they find to pay their CEO's into the standards of their nursing
homes. And if Medicare is made to reimburse them for the proper equipment
we might see some change in this deplorable situation. We need to recognize
there are not enough nurses to adequately take care of the critically ill
and terminally ill patients. This is due to understaffing from the greed of
corporations. Florence Nightingale would roll over in her grave if she knew
what was going on with the terminally ill and dying patients with regard to
decubitus and lack of preventative care. A person sticks their hand on a
poison ivy vine and they naturally get the poison ivy rash. Do we need to
study and study and restudy that this person will break out in a rash. Do
we need millions of dollars of research to study that poison ivy will give
you a rash and study the rash till the cows come home? Do we need to study
the studies and monitor the rash with millions of dollars more in research?
Or, can we just figure out how to avoid the poison ivy in the first place.
It doesn't take rocket science to figure out putting a fence high and wide
enough around it will keep peoples hand off of it and it doesn't take rocket
science to figure out that an appropriate bed surface would help the
terminally ill from developing ulcers faster than they can die.
The elders are so vulnerable. Elders are more vulnerable than baby's; at
least babies can grow up and sue their perpetrators. Our elders go to their
graves silently.
There might be another alternative to nursing homes and that is foster care
for the bedridden. We have foster care for children and teens and midwifery
for baby's birth. We need the same for our seniors in their final months.
We need an organization (by the grace of God I plan on initiating) that has
compassionate citizens willing to adopt the bedridden elderly to keep them
free of decubitus and make sure they have a loving crossover. If you have
any ideas or any information that can help me on my quest to create a new
path for seniors to spend their last few months other than in lying on holes
in their backside I would appreciate your help.
We need for you to join us.
Thank you kindly for you attention,
Sherry Ernst
President and Founder
nodecubitus.com (Website to be up by end January)
email: stopthepain@nodecubitus.com
If you have any questions or comments on senior health nutrition, fitness, etc., go to the Senior Health Forum where we are talking about the following:
