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In last months Newsletter I have talked about why some Patients and their
families suffer dramatically within Intensive Care, due to the lack of specialised
Intensive Home Care Nursing Services for long-term ventilated Customers with
Tracheostomy and their Families.
In this issue of our Newsletter I want to talk about Quality of Life for our
Customers and their families.
To dive right into the topic, Quality of Life is something that is very subjective to
the individual and people have different perceptions and different ideas of what
is important to them and what is important to their Quality of Life.
Quality of Life is a term that is very often used within the Intensive Care
environment, as health outcomes and recoveries of people in Intensive Care
vary and are looked upon of what the Quality of Life might be in the future for
someone who is critically ill in Intensive Care- should they survive their ordeal in
Intensive Care.
Whilst the multidisciplinary team in Intensive Care is usually so caught up and
busy attending to the vital needs of the Patients in Intensive Care, we very often
forget to ask some fundamental questions regarding the outcome of a Patients
recovery. The Patient might survive the Critical Phase in Intensive Care only to
find that his or her Quality of Life might not be the same than it was before
being admitted to Intensive Care. A short and speedy recovery might be out of
sight for some Patients.
As for some Patients in Intensive Care, especially the ones requiring ongoing
ventilation with Tracheostomy, the reality is that their Quality of Life is not as
good as it was before admission to ICU. And here is a massive dilemma. Should
the ICU community in this day and age simply give up? And they often do with
many Patients- and present to the Patient and the Family, that due to the lack of
perceived Quality of Life and/or Quality-of-end-of- Life, treatment needs to be
limited or withdrawn, leaving the Patient in Intensive Care for a short period of
time, after the decision has been made to withdraw treatment and the Patient
then actually is going to die, as life supporting mechanisms such as ventilation is
withdrawn- leaving no option for the Patients and the Families, but to accept the
failure of the Health System to respond to Patients and Families wishes as the
current paradigm in Intensive Care and within the Health Industry is based on a
scarcity mindset.
There is no thinking outside of the box. Specialised Intensive home care nursing
services for long term mechanically ventilated Customers with Tracheostomy and
their families? “We’ve never heard of that” or “too complicated”. Those are some
of the comments people might make, when they hear about successful overseas
models of Home Intensive Care Nursing services for long-term mechanically
ventilated Customers with Tracheostomy and their Families. Those services have
been successfully operating for more than a decade now in many developed
countries all over the world.
But rather than continue talking about the obvious issues, INTENSIVE CARE AT
HOME wants to talk about solutions and ways out of the dilemma.
To start with, let me point out one crucial thing that I think we keep forgetting
when we talk about long- term Ventilation with Tracheostomy in Intensive Care.
? Every human has the right to determine where they want to live
? Every human has the right of making their own decisions and to develop
their personality to the best of their abilities
? Nobody can be forced to go into aged care against their will
After a referral has been made to our services, we optimise and streamline your
loved ones discharge home. We look at your loved ones equipment needs and
we put a support and nursing structure in place where your loved ones Quality of
Life and/or Quality-of-end-of-Life is paramount.
At the beginning of your loved ones transfer home, stabilisation of vital
parameters is paramount. Therefore our focus is on stabilisation vital organ
function initially, before we can provide your loved one with the Quality of Life,
he or she has been waiting for in Intensive Care.
In order to achieve Quality of Life we focus on autonomy, independence,
communication and mobility. In order to achieve those goals we need the full
support of the nursing team and the Family.
Here we focus on your loved ones holistic needs.
What does ‘focusing on’ needs really mean in a home care environment, when
my loved one is ventilator dependent with Tracheostomy?
Great question. For example, when I worked overseas in the community to
provide specialised home care nursing services for long-term ventilated
Customers with Tracheostomy and their Families, two prime examples come to
mind.
We had one Customer who was in his early forties and who had- prior to being
injured in a car accident and becoming Paraplegic and ventilator dependent- run
his own business, as he was the owner of a car dealership. With the help,
support and our ‘can-do’ attitude, we managed to get this gentleman back to
work for about 20 hours a week. I guess it would have been easy to just give up
with the sort of challenges this gentleman was facing. But giving up is never an
option. It is all about making things work.
The other Customer standing out and achieving amazing results was a 12 year
old girl who spent a good 24 months in ICU, before a specialised Home Care
Nursing service took on the Care of this girl. She had a rare muscular disease,
leaving her respiratory muscles weakened and ventilator dependent.
Within 6 months of taking her back home to her Family, we managed to get her
back to school every day. Once again it came down to looking outside of the box
and looking of what is possible and making it work. Imagine what sort of
difference in Quality of Life it makes to a 12 year old girl going back to school
after 24 months in ICU.
Now, I also want to highlight that every case is different and every case has its
unique challenges and opportunities. But we always find a way of focusing on
your loved ones biggest needs and make it work.
Patrik Hutzel, Critical Care Nurse July 2012

RELATED LINKS:

3 reasons why long term mechanically ventilated Customers, their families and Intensive Care Units need specialised Intensive Home Care Nursing services in the community Introduction