End of Life Decisions and Care

End of Life

My heart breaks when I think of someone being alone in the hospital to help a patient, and not sure what to do.  It's not always because of the care they are receiving, but also because the loved one may not know what the patients last wishes are.

Bill (names are changed) is with Gary who he cares for as a paid caretaker.  Gary is elderly and sickly.  Bill has been with the family for many years and is watching Gary's decline.  As Gary enters the hospital and now can not speak for himself, there is no direct guidance on what Gary's wishes might be.  Do they fight for him to survive with feeding tubes and forced treatment to keep him alive or do they send him to hospice to die peacefully?

When the patient has family, and money, people come out and want to help make decisions.  This causes even more turmoil.  As Bill watches from the sidelines only able to give guidance to what he believes would be best knowing Gary so well all these years, he shares with me that he will go right back to his own family and make his wishes known.

Having a support system available to you before you need them is crucial and having these conversations though unpleasant are much needed.  The only guarantee we have in life is that we will die.  Why not than have the conversation now about what we might want?  It can be changed later. If you are healthy and young, you may want the medical team to fight for your life, but if you were so severly injured or sick, with no chance of a happy ending and would rather not be kept alive through forced feedings or machines, make these wishes known.

Don't be afraid to talk about it.  It's a gift you will be giving others.  

Here is a Health Care Proxy Form to help start the conversation.   http://www.pulseofny.org/resources/HealthCareProxy.pdf

Simple Lessons from NPSF Congress

National Patient Safety Foundation 15th Congress, and the simple lessons learned

I just returned from the National Patient Safety Foundation 15^th Annual Congress.  I know it should be better attended because I am a big fan of NPSF and the programs offered.    I happen to like that it is not as big as some other conferences.  It gives it a more personal atmosphere and people get to know one another.  You can pass each other in the halls and elevators and recognize faces.    The content of speakers are as good as one can make of it.  There are programs available for everyone’s interest.

The common themes, once again that I heard from participants is that they have found tools to go back and make it happen in their own hospital.

If this is what is happening when at the conference, why then am I still seeing such problems as the bedside?  If the one nurse doesn’t want to wash her hands or gives a patient an attitude about it (as a patient safety friend just shared during her hospitalization) then there is still a disconnect between what is actually happening at the bedside and these conferences.

When I checked in to the hotel and walked to my room, a staff person walked past me with no greeting or acknowledgment.  My first reaction was that this was not a Marriott Hotel.  At a Marriott everyone greets the guests.  Although I was greeted by every other staff person at this hotel, it stood out that one did not greet me.  It surely didn’t change my opinion of the hotel, but the experience stayed with me.  It’s often no different in hospitals.    Care may be perfect but we often remember the one incident that made us uncomfortable.  That is why we need 100% participation in safety, service and care when in the hospital.  There is no room for the one straggler.

Although so much more comes out of attending a conference like this, I just wanted to touch on that small piece.  Other things I heard was how to start a patient and family committee at a hospital. Ways to include patients and families in programs and projects.   Calling a Code Lavender when a patient may die or has died to send healing thoughts and prayers to the family and staff who are also in pain over this loss.  The list goes on and on.  Two days well spent.

 

Hospitals That Do it Right - Patient Safety is Priority

Finding Perfection

I just had the opportunity at a meeting to learn of hospitals that are doing such extraordinary work improving bad outcomes that they are winning awards and sharing their information.   Finding and sharing solutions is important to the industry to learn the best way to save lives, save money and improve the care and satisfaction of patients. 

Over the years I have heard that it is “almost impossible” to avoid all hospital acquired infections or injuries, but more and more I am learning that this is not true.  Those hospitals that are willing to work hard at changing the culture of staff and even the patients and their families will be able to reduce injuries.  It’s not impossible, it is hard work and we, as patients must demand perfection. 

The people who work in the hospital usually know what needs to be done.  But, on many levels there is a breakdown of either communication or people get too comfortable and forget proper procedures – as simple as hand hygiene.  As I sat on a bus with a physician following this meeting, I shared with her that the bus driver knows what he is supposed to do.  He knows that he needs to be well rested, stop at stop signs and drive the speed limit.  He can either choose to follow these behaviors……or not.  There is nothing we, as the customer can do to change what he will decide while we are in motion.  Why then are we, as patients expected to remind hospital staff to wash their hands, mark the site of surgery or make sure we are getting the correct medication?

A nurse at one of the hospitals that shared their stories, caught that a medication, meant for a small child was about to be given an adult dose.  The medication error went through numerous check points with many opportunities to be caught.  But, because this nurse stopped to check every medication as she was trained to do, this child’s life may have been saved.

The speakers all agreed that the change must come from the top.  Senior leadership willing to go to the end with a patient safety agenda that demands perfection, willing to fire people who don’t comply and reward those who do.

I still believe it must come from the customer too.  We must demand that it can be done and do what we can to share the information when we see something done correctly.