Happy New Year!

Happy New Year!

Here we are already in 2016!  Time flies, and we are yes, admit it! One year older!  So I reflect on some very positive things from 2015:

As I mentioned before, I was invited to present a talk at the World Nursing Conference in Dubai.  It was very interesting, for one, to be half way around the world!  And also in a completely different culture!  As nurses, we all have many of the same concerns for better healthcare and improved lives of those we care for.  And as such I am thinking that it is never too soon to think about whether we have had those discussions with our family members about our wishes should a catastrophic event or illness occur. 

I recently did a talk at our local library in Michigan about considering your wishes if something occurs, and what to consider and why.  Keep in mind that we always think ‘It won’t happen to me,’ or ‘I’m too young to consider what I’d want if I cannot continue the life I have now.’  But it is NEVER too soon to think and talk about these topics, as hard as it may be.

You do not want to have these things happen and you have not discussed your thoughts and wishes with anyone.  Trust me, it is something I see very often at my hospital.  And it is too late of you cannot communicate.  So please, think about this, read some of the questions I have here on the website and  ask a healthcare professional or your doctor to help you understand.

Have you Thought about 'What If?'

I recently had a social event along with  my neighbors. We got around to talking about ‘What If’ scenarios because we were discussing our age.  It seems everyone thinks nothing is going to ever happen to them that is bad unless we are very old.  Of course, bad things happen to good people every day.  I mentioned to my neighbor. ’If only we had a crystal ball!’  Well, we don’t.  I asked if they had a Living Will, or as some call it, ‘Durable Power of Attorney.’  My friend said, well, it’s terrible!  We don’t even have a will!’  Of course, we all believe nothing ever will happen to us so we put off these things.  And we take life for granted!  And...we're busy.

I asked her, ‘What if your husband here got into a serious car accident and was paralyzed, needed to breathe on a ventilator for life and get fed with a feeding tube?’  She shuddered and said she didn’t like talking about it. I also asked: ‘What if he was comatose in an ICU and was not likely to survive, would he want to continue to live, even though we may have no idea the pain he might be in?’   This seemed to give them food for thought.  Well, they are not alone.  Her husband acknowledged that these discussions are probably valuable to have.  I supported him on that thought.

So if you have not given thought to things like these, today is a good day to start thinking about it.   Think about this:  You are the patient in the bed, in pain,  not likely to survive, and you cannot tell anyone.  Nor have you ever talked about these things to any of your family.  You think it can’t happen to you?  It happens every day to good people.  Think about it.  Talk about it.

Wow!  It’s been a while! I am still busy practicing at the hospital, learning and observing.  One of my goals each day I work is to chat with the family of my patient and understand what they and their family member really wants.  Often I am dealing with elderly patients.  I know we all think we’ll live forever, but like a machine after many years, we wear out.  Even though we have many tools we can use to help people get better, or get ‘over the hump’ of surgery, sometimes it is just too much for us. 

So what should the considerations be then?  First and foremost, there should be little or no pain and suffering.  Problem is, we cannot often talk with those that are seriously ill.  They can’t tell us they are in pain.  So that’s all the more reason why we should think it through and consider the reality of the situation.  This is where an expert Advocate comes in.  This is where we should talk about end of life comfort, or the possibility of recovery.   Frank discussions of medical possibilities, or none is paramount here.  So talk about ‘What if” scenarios with your family.  It is difficult, but important.  Would you want to be in pain, unable to recover but unable to tell anyone?

I’m also delighted to mention I have been invited to speak at the World Conference on Nursing in Dubai this month!

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Have you had conversations with your family about your end-of-life wishes?  Dying with dignity is a part of life well lived.  Most seriously ill patients are unable to express their wishes and also are unable to communicate any suffering at the end of life.  In more than 88% of doctor-patient- family conferences during serious illness, there was no conversation about the patient’s own values and wishes. (Critical Care Medicine April 2015).

Decisions about using life support (breathing machines, dialysis, transfusions etc) usually hinge on trade-offs between the length and quality of life.  And they are influenced on the person’s understanding of their expected level of function, independence and comfort.   But most people who are critically ill are incapacitated and therefore the family members try to make the decisions for them.  So does your family REALLY understand what you would want?  And do you understand the implications of the life-support treatments?

You can be comfortable and have your wishes carried out but only if you take the right steps now.  Talk with your family.  We all will die, but some of us will have a plan in place to die in comfort.  You can too!

Well, to follow up, My aunt was seen in a major medical center hospital (read University hospital).  They correctly diagnosed her with a very fast heart rate which was causing the loss of consciousness (something I had also determined as a diagnosis myself.)  She is now on the correct meds to slow her heart rate and has had no incidences since!

So this is important.  I can't even count how many times people tell me their MD, who is a part of the 200 bed local hospital, is "world renowned" in cardiology, or lung disease, or kidneys, or whatever.  The way you become world renowned is to work in a large university-affiliated teaching hospital (for years!) and continue to do research and publish the results.  Small local hospitals do not require their MDs to read a medical journal let alone do research and let the world know what they found by publishing.  So, no  that doctor may be world renowned, in their head.

So it pays to be suspicious.  You ask why?  Well, let's put it simply:  if you bought a Ferrari, or a Lexus even, would you bring it to Joe-Bob's car fixing shack for repairs????  I highly doubt it.  But yet, we will blindly trust any doctor and not even ask appropriate questions prior to major procedures!!

I tell my clients to ask some simple, direct questions such as "What is the recovery period?"  "Will I be active enough after the surgery to return home?  Or will I need extended rehab in a nursing home?"   What if this doctor's complication rate is off the charts?  Do you think they are going to share that info? When was the last time they read a journal citing that this procedure was state-of-the-art and currently evidenced-based?  When they cannot answer these questions readily...get another opinion!

Just some food for thought.  It's your body, spouse, friend, family member.  Are you really looking out after yourself or your loved one?  Or are you blindly trusting that this is for sure the honest truth? Yes it might be.  Or...maybe NOT!  We can help!

The other day, I was speaking to my elderly Aunt.  She was telling me that she found herself fainting for no reason.  She told me one day she woke up on the kitchen floor.

I was alarmed.  I asked if she told her doctor, and she did.  He had her undergo many tests but found no reason for the sudden loss of consciousness.  Now, this is not normal and these symptoms have meaning.  My conclusion was either a cardiac problem or something like a stroke.  She told me she had no problems after she fainted. 

Of course., since I am the family Advocate, especially for health-related issues, I urged her to seek a second opinion at a large University center, where they would have more specific diagnostic tests.  I searched and gave her some physician names to call and set up appointments.  She was very thankful, but this is what I do. 

I cannot sit by and just blindly trust anything a doctor is saying.  These statements need to backed up by evidence-based medicine and research.  Only then can we make decisions and proceed or elect to wait and see.   I told my Aunt, ‘The worst case scenario would be that  you suffer a big stroke and end up in a nursing home the rest of your life.’  That was appalling to her and I think that caused her to rethink the potential severity of these symptoms.

But the best I can do, as head of Family Medical Advocate is to BE that expert advocate and help people make informed choices.  I am waiting to see what happens next.

What Do You Think?

I recently read an article about discussions about 'What If?' situations and discussion about what your wishes will be at the end of your life.  It was interesting! The Institute of Medicine came out with a 500-page report earlier this week urging more conversations and action surrounding end-of-life care.
The Institute of Medicines (IOM) “Dying in America” report says Americans should start having end-of-life conversations much earlier, even when a teenager gets their first driver’s license at 16. 

Oregon has been out front of other states in this area, with a program developed in 1991 to ensure the wishes of those with advanced illness or frailty are followed.  Called "Physicians Order for Life-Sustaining Treatment", the form allows people to express their wishes about the level of care they receive.  “It is a tool that would help any of the problems they’re discussing,” she said.

Most Americans haven’t documented their wishes for end-of-life care. A national survey in 2013 found that fewer than 30 percent have done so!!  The report also found gaps in the health care system for patients at the end of life including very few doctors specializing in palliative care and inadequate support for dying patients.

We never want to have these discussions..After all, we are having a great time living today, right? But in a split second, you can be clinging to life and unable to express if you are in severe pain or what you want to do.  Once you end up in the ER, the Healthcare Team has one focus:  To try to save your life...at ANY cost and ANY quality.  After the ER, you end up with a situation that, if not properly discussed and written down can be something your would never agree to.  Asking the right questions, and thinking hard and long about what you really want can make all the difference...for you AND your family.