Thursday, October 31, 2013

Family Dynamics

Have you ever noticed how a crisis can bring out the best or the worst in families? We see this in natural disasters, financial crisis, and physical traumas. Usually the stories we hear are the positive tales of families bonding together with incredible strength, finding themselves more resilient and closer than ever.  Less told are the stories of family implosions, where the end result is a fractured, broken mess. 

Probably, the more common finding when a family faces a crisis is not the extreme good or bad, but a mixture of both. This is especially true when a family confronts an end of life issue together. The conglomeration of personalities, conflicts, and opinions is what we call family dynamics.

This is an inescapable part of being in a family, and if you think your family is immune, you just haven’t been faced with the right crisis yet. Consider this your warning.

The reason family dynamics are so visibly apparent when a family member is facing death, has much to do with the limited time frame and finality that death introduces. No longer can differences of opinion between family members be ignored, as the immediacy of dying requires no hesitations. One person may think more treatments should be sought after, while another person thinks they should change the focus to comfort based goals. Fireworks may ensue, as the treatment seeker feels that the comfort approach is leading to death.
Besides the conflicts regarding the overall goals of where a patient is heading, family opinions on proper medication use, resource allocations, final wishes, and funeral plans can all cause battles.

At the core of some family dynamics are unresolved personal issues pertaining to the one who is dying. This can range from past wrongs, to current guilt at how the relationship has turned out, to perceived favoritism among siblings.  When all of these past slights are carried into the room of a family member who is dying, even something as simple as deciding on whether to insert a bladder catheter can erupt into conflict because it transforms into a symbol of power struggle.

I was once in a room where such a dynamic took place.  In whispered dramatic tones, family members hovered in a corner arguing about whether their dad should be forced to eat his ice cream or not. 

Meanwhile, their father quietly began to make the changes suggestive of immediate death, and I had to draw their attention back to what really mattered; the last moments of their father’s life.

This is the problem when family dynamics run amok; the focus is shifted away from the patient. This may be precisely why some families create conflict, as it becomes more comfortable than confronting the reality of dying. But in the end, it’s not supposed to be about us. In the end, it really is about the one who is dying.

We cannot escape our personalities, or the summation of all things from our family story, but we can pause and remember who the main character is when someone’s dying.  Maybe, if we’re prepared for the roller coaster of family dynamics, and get lucky, we’ll be a stronger, closer family by the end.

Wednesday, October 30, 2013

The Five Things that Matter Most

It happens more frequently than you might realize; a patient with a terminal illness, with every reason to have already passed on, seems to linger.  The family is often gathered, and has spent several days holding vigil and yet their loved one hangs on to life by a thread.

Often at these times the family senses a purposeful waiting from their loved one and a hunt as to why there is a stall ensues. When the patient’s symptoms have all been treated appropriately, and he or she rests peacefully, this several day pause in the transition can weigh heavily on loved ones.

 “I just don’t understand why Dad doesn’t let go!” a daughter will say, as the waiting piles up day in and day out. 

There is a theory that floats around the hospice world as to why some of our patients wait to die. It can’t be proven scientifically, but even if it’s a coincidence, the idea behind the theory is powerful. 

The idea, first written about by a well-known Palliative Care doctor named Ira Byock in a book entitled “The Four Things That Matter Most: A Book About Living” discusses crucial phrases we all need to hear from our loved ones on a daily basis.

However important it is to speak these words routinely, these phrases become paramount as we near our death.  The lingering we see, and can’t explain medically, at times may be a patient waiting in hope to hear these words.

The four phrases that Dr. Byock writes about, and I think every person longs to hear from those dear to them are “Please forgive me”, “I forgive you”, “Thank you”, and “I love you”.  These simple words hold enormous power and encompass so many reasons why someone may not be letting go.  When we die, we all want resolution, absolution, appreciation, and adoration.  This sets the stage for peace and the ability to release oneself.

I personally think there is yet another word that holds even more weight, and it is probably the hardest of all the phrases to say. We utter this word nonchalantly every day to co-workers, spouses and children; however, it lacks the finality that it has when someone is dying.  In fact, despite encouraging families to do this, many can never say this word.  That is, they can’t bring themselves to say “Goodbye”.

What is unrealized is that the power of this word is not in the emotional and physical separation that it implies, but in the permission it grants. Many of my patients lie in a stupor for days, hoping to be granted permission to go, permission to give up the fight, permission to be pain free and at peace. 

Goodbye doesn’t mean that that we want them to die, or that we won’t be devastated once they are gone. Goodbye means we respect them enough to not only acknowledge the reality of their dying, but that we love them enough to give them the opportunity to go if they need to. 

Even if all these phrases don’t seem to change the timing of someone’s death, they are guaranteed to bring healing to those waiting.