Hi, it's Patrik Hutzel from INTENSIVECAREHOTLINE.COM, where
we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!
This is another episode of "YOUR QUESTIONS ANSWERED" and in last week’s episode I answered another question from our readers and the question last week was
My 84 year old Dad has been in ICU for three months! He's ventilated with a tracheostomy, the doctors want to let him die and turn off the ventilator! We want to take him home instead, what are our options? (PART 2)
You
can check out the answer to last week's question by clicking on the link here.
In this week’s episode of "YOUR QUESTIONS ANSWERED" I want to answer the next question from Belinda one of our readers and the question this week is
My 84 year old Dad has been in ICU for three months! He's ventilated with a
tracheostomy, the doctors want to let him die and turn off the ventilator! We want to take him home instead, what are our options? (PART 3)
This series of questions are excerpts from a 1:1 phone/Skype counselling session and a series of email counselling and consulting
Belinda continues to describe her father’s situation in Intensive Care as follows
Hi Patrik,
yesterday the doctors wanted to meet with us again but as you have advised us we didn’t go into the family meeting.
They did instead come to us at the bedside and they told us that if my father needs Vasopressors/Inotropes as an infusion they won't use it because they say it's futile.
They will only give Vasopressor/Inotrope boluses and
Miodrine.....
They in essence have told us that he’s not for CPR(=Cardiopulmonary
resuscitation) and they have asked us to sign a “DNR”(Do not resuscitate) form.
Again, as you have advised we didn’t sign anything and we told them that we want our father fully resuscitated should he have a code blue or cardiac arrest.
If I wanted Code Blue and full resuscitation, are they allowed to say NO?
I think I should be allowed to
decide if I want it also if it’s against all odds....
Isn't that true?
Not that I want it, it's enough that he is on the Ventilator and the tracheostomy.
I just want to keep challenging them that they can not decide for us… what we want for our father and also what we have discussed with him in the past.
Thank you
Belinda
Hi Belinda,
I'm sorry to hear that you are still not getting heard by the Intensive Care team.
As I have said in our phone session the other day they can't decide for you or for your father. If they do so, they are most likely breaching their own hospital policies or even the
law.
It's most likely against their own hospital policy and/or against the law.
Here are your options:
- ask them for their end of life/ DNR(Do not resuscitate) policy. They have to be transparent about it, don't and never take "no" for an answer! They have to show you their “DNR” or end of life policy if you ask for
it and then you can see if it aligns with what they are doing in the real world.
- If they are using Midodrine it is a Vasopressor/Inotrope, however a relatively weak Vasopressor/Inotrope and if they give boluses they are not doing as much as they can in order to sustain your Dad's blood pressure
- Here is a link to an article about Patient's and family's rights in the USA and it clearly states that decision making needs to
involve Patients and/or their Next of kin if the Patient can't make the decision themselves http://www.encyclopedia.com/topic/Patients_Rights.aspx
The bottom line is that you
need to keep challenging them and stand up for what you believe in before it's too late!
If your Dad keeps having low blood pressure for the infection/sepsis Vasopressors/Inotropes can save his life and they can at a bare minimum buy him time so that you can see if he can recover or not.
Even if he can’t or won’t recover you will still feel more satisfied
because you have given him the best treatment and best options.
I know you and your family are going through a very difficult time at the moment.
It's very important that you and your family are getting heard in this situation, because not only do you want to, but you need to have a say in this situation and you have said that you and your family want to be the decision
maker!
As I have said over and over again in my blogs and in my "your questions answered" section, even if your loved one is approaching their end of life, you want to make informed decisions,
have peace of mind, control, power and influence!
You can't just "buy" into the negativity and the "doom and gloom" of the Intensive Care team if you don't think that this is the right thing for you, for your Dad and for your family!
If you feel like you are not getting your needs met in this situation, it can leave you bitter, full of resentment and angry towards this situation for the rest
of your life and it's not something you want to live with for the rest of your life. It's difficult enough just as it is.
Imagine if your father is dying and you haven’t been able to reverse the
Intensive Care team’s decisions, it would make you feel very bitter and resentful.
I also think you and your family still haven’t fully stepped into your
power state.
In order to do so you really need to stop thinking what the Intensive Care team can and can’t do. At the moment you are still guessing because you still haven’t asked them about their “DNR”(do not resuscitate), end of life and/or “withdrawal of treatment” policy.
Recommended:
You may also use the document that I linked to about Patients and families rights in the USA.
From my more than 15 years experience as an Intensive Care Nurse, as well as from counselling and consulting other families in Intensive Care over the phone, via email or via Skype, I know how I can help you even if your Dad is inevitably approaching his end of life. As I mentioned before I can help you getting an end of life situation on your terms and not on the Intensive Care team’s terms.
At the moment the Intensive Care team is still treating you and your family as if you were part of the
99% of the families of critically ill Patients in Intensive Care who don’t make informed decisions, don’t have peace of mind, control, power and influence.
The Intensive Care team is so used of getting what they want that they are not taking you serious enough yet.
You need to become even more assertive and I have given you tools and strategies to do so. You just need to step even more into
your power state.
You have already gone a long way by seeking help and by telling you what you accept and what you won’t accept.
Do it again. Repetition is the mother of skill.
You should also ask again for the option in regards to home care. If you want your Dad to be looked after at home you should continue pursuing this agenda.
Again, tell them and show them what can be done for other long-term Intensive Care Patients
in the home like with INTENSIVE CARE AT HOME.
You may also want to continue question the Intensive Care team on their view that giving Vasopressors/Inotropes is “futile”.
This ongoing talk about “futility of treatment” is only the Intensive Care team’s perception and not necessarily reality.
The definition of “futility” is that treatment is of no “benefit” to a Patient.
This is a
perception and not a reality.
What’s your perception of treatment for your Dad?
Continue asking those questions to yourself and to the Intensive Care team.
You’ll find out what the right answers are.
As a next step you may want to consider seeking legal advice. I do believe that
following my strategies will get you the results that you want, but of course feel free to seek advice from a legal person as well if you think that’s a step you want to take.
Wishing you and your family all the best
