What comes to mind when you think about the experience of a “good death”?  Often people will suggest that they would like to die in their sleep.  Others suggest they would like to die peacefully in their home surrounded by loved ones.  These are the ideals often suggested, but the reality for most of us is that we will die in a hospital or some other institutional setting.  Although 7 out of 10 people suggest that they would like to die at home, the reality is just the opposite.  Only 25-30% of people die at home while 70% die in a hospital or nursing home.  

As medical technology has evolved so have the myriad of treatments and technologies medical professionals can employ to keep people alive when our bodies and minds begin to fail.  The term “life-support” has become a common term in our language.  But when does “life support” begin to feel like it is no longer supporting life, and it is merely extending the dying process?  How do we decide when we need to stop using the mechanical devices such as ventilators and tube feedings to support life, and allow a loved one to die?

Anyone who has found themselves in such a circumstance knows these decisions are never easy.  It is natural to “hope for the best” and believe that our loved one can recover.  It is hard to come to terms with the reality that all the best efforts of medical professionals may not make our loved one better.  The treatments and technologies being used have done all they can, but it is still not enough, our loved one may be dying.

This “grey zone” can be difficult for families to navigate.  Are the benefits of treatment outweighing the burden of treatment, or is the burden beginning to outweigh the benefit?  What would my loved one want?  How do they define quality of life?  What have they told me they would want?  What did they say in their Healthcare Directive?  

Medical professionals work with families to help them navigate this complex landscape of decision-making in the realm of likely benefits and burdens.  Often what may seem clear to medical professionals does not seem so clear to family members.  Medical professionals may begin to recognize that additional treatment is not going to make the patient better and continuing to offer anything other than comfort care is merely extending the dying process.  But families need time to absorb information and come to terms with what is happening.  Knowing the patients’ wishes becomes vitally important at a time like this.  If the patient can no longer speak for themselves, medical professionals turn to family members as decision-makers and always review the healthcare directive if the patient has completed one.  

When I do end-of-life educational presentations for groups of people I often begin by telling them that as a member of the St. Cloud Hospital Ethics Committee, they don’t want to see me, because if they do it means something has become very challenging about end of life decision-making for their loved one.  One of the most difficult circumstances for me as a member of the Ethics Committee occurs when a patient has completed a Healthcare Directive with very clear instructions about what they would decide in the particular circumstance, and the family is choosing to make a different decision.  Often the patient has outlined in their Healthcare Directive that they would not want to remain on life-support if there was no hope of benefit or recovery, but the family wants to keep treating aggressively and leave their loved one on “life-support.”  

It is understandable that family members need time to come to terms with the circumstances on an emotional level, and they may not be ready to acknowledge that their loved one is dying.  Medical professionals do what they can to allow family members the time they need to accept the reality of the circumstances, but there is a limit to how long they can maintain patients on life support.  

Merely having a Healthcare Directive at times like this is not enough.  Having conversations with the loved ones who will be charged with executing our decisions becomes paramount.  Although it is impossible to outline every potential scenario related to our dying and death, we need to be as clear as we can in conversations with our family members about our wishes in the event we are no longer able to make decisions for ourselves.  Sharing a few examples can go a long way to give family members a sense of our wishes.  It is always best if family can review a healthcare directive and be familiar with it before an end of life decision presents itself.  If you review and discuss your wishes with family members you will have the best chance of your wishes being followed.  

Although the healthcare directive is a legal document, if the patient can no longer make their own decisions, hospitals tend to default to the choices of the person who is designated as the decision-maker.  Therefore, it is vitally important to have conversations with those we have charged to make decisions for us before they find themselves at our bedside trying to follow through with our wishes.  A little effort on our part now can save our loved ones some of the emotional turmoil they may experience if they are put in a position to make decisions for us later.  It is our best chance to experience a “good death” for ourselves and those we love.