No Right Answers...

What you can do when faced with end of life issues.

Many of the situations we deal with in the critical care setting are set in hard, fast rules.  If you do this…you get that result.  If you give this drug or perform that surgery, you will reach this objective…

I’ve heard it said that intensive care units are a ‘pharmacological and mechanical fantasy lands,’ where we control the life and death of our patients with a myriad of drugs and technology. And, that is true to an extent, but unfortunately, not where it really counts.

In a lot of instances, life and death decisions made in the critical care setting are moral issues.  Because we deal with humans and human nature, it’s imperative that we carefully consider what might be the best course of treatment for our loved ones.  And, while the doctors and nurses are the educated professionals, it falls upon you the patient or you the loved one to make the really difficult choices.

Consider what it might be like if it was your mother or father dying from end stage cancer, or your child suffering a terrible head injury from which they will never regain consciousness.  What if it’s a close friend who’s depending on you to make their medical decisions.  Or, if your spouse is suffering from the last stages of Alzheimer’s and cannot remember the names of his children.  In all of these cases it might fall to you to be in charge of their care.

Unfortunately, there are no definitive answers here, no clear cut ‘right’ or ‘wrong.’  It’s only what’s right or wrong for you and your loved one.   In these cases you really have to search your heart, ask yourself ‘what would that person want?’  Perhaps your mother has been a fighter all of her life and would have wanted to give life every chance.  Or, maybe your father’s greatest fear was to suffer a long, painful end to his life. 

Every circumstance has a dozen possibilities and it’s up to you to choose the best course.  Not only that, but perhaps like me you are one of five children and somehow you all must reach a decision together.  Again, I’ve no easy solution to give you.  But, I do have some suggestions that might help you and your loved ones make decisions that are right for you. 

First, take some time to really think about and discuss these life and death issues.  Take a hard look at current events.  Not too long ago there was the case of the young woman in a vegetative state for many years whose husband wanted to discontinue her life support.  Serious issues were raised by both sides of the argument, and to this day there are still those who question the moral and legal ramifications.  Use this as a springboard for discussion between you and your loved ones about life prolonging treatments.  Also, go to your local hospital and inquire about what information they have available.  In Florida, for instance, it’s the law for hospitals to provide forms for direction of medical care to their patients upon admission to their facilities.   

Consider putting together a living will.  You can do this through an attorney or even write your own and sign it with a witness.  Sometimes state governments and hospitals have forms available to you.  In most cases it only has to be witnessed and notarized.  Check your own state’s laws in this area, as they can differ depending on where you live.  

As part of your hospital documentation, appoint a health care surrogate.  If you aren’t married, or have a legal power of attorney, this is the person that you direct to make your medical decisions in case that you are unable to do so. 

If these topics are too painful or too uncomfortable for you to discuss openly, consider going to a member of your clergy, a psychologist, or a close friend for help.  If you are already in the hospital setting and you don’t have any of the above, ask one of the nurses to call the hospital chaplain for you.  These are nondenominational clergy members who work with the hospital for just such circumstances.  They are well trained in how to deal with emergencies and long term care, as well. 

Some of the other things to consider in the decision making process.  Quality versus quantity, for instance.  If you are in a vegetative state and cannot ever engage in conversation or participate in your life, do you really want to continue living?  If prolonging your life involves unending medical procedures and a long, slow decline until your death, do you choose that path?

There are dozens of books devoted to this very subject, and again, there is no right or wrong answers, but just what’s right or wrong for you and your loved one.   

Also, consider the cost of treatment, not just of expensive medical procedures, but of daily care and housing for that individual as well.  Has your loved one ever voiced an opinion about not wanting to be a financial burden on their family?  If they don’t consider financial cost an issue, what about the human cost?  Who will be their caregiver?  Who will direct their medical care?  Fortunately, hospitals do have social workers and discharge planners who are available to you to help with these issues. 

I can’t tell you how many people I’ve seen struggle with end of life issues.  Just the other day a woman whose husband was on the verge of dying said to me: “My husband has done everything for me for the last 45 years, and now he’s abandoning me.  Why couldn’t he have told me what to do now?” I really felt terrible for her because it didn’t have to be that way.  One discussion could have helped her to deal with his passing and have given her the comfort of knowing she had done the right thing.   

One final thing.  A living will is not legally binding until your attending physician writes the order to enact it.  That means, that having a living will represents your wishes, but in order for the nurses to carry out a ‘do not resuscitate’ order, your doctor has to write it on your chart.  In the hospital where I’m employed, we can give you a patient directed, or non-patient directed document of intention.  This means you can choose to stop diagnostic tests--such as lab work or x-rays, surgery, artificial breathing assistance, or feedings through stomach tubes and veins.  Even things like blood transfusion and dialysis can be listed there.  Again, it is not an order until the doctor writes and signs the directive into action. 

As always, I hope this helps should you ever find yourself facing end of life issues.  If you have questions or comments, you are welcome to send them to me at: Pamlabud@pamlabud.com.  I can’t guarantee I’ll be able to post them, but I’ll certainly read them. 

As always I wish you the best of health and happy reading! 

Pam