Wednesday, January 15, 2014

A dose of dignity

The loss of control over so many aspects of our lives can be daunting as we age.  What seemed unlimited, like time and energy, begins to ebb away, and our bodies don’t always preform like we want.  Something that used to be so simple, now takes effort and at times causes discomfort.  The idea of running errands or fixing a meal can feel like an insurmountable task. 

It is no wonder that as we near the end of our lives, this loss of strength and energy to do daily things, ultimately affects our very interest in these tasks, leaving us often homebound and isolated.  To survive, we must rely on others to begin to fill in the gaps.  One by one roles and autonomy are stripped away. 

As if this weren’t hard enough, much of our identity is based on objective things like what job we have, or what tasks we perform.  Over a lifetime these roles solidify, becoming like a second skin.  This important sense of self, amidst our environment is a compass really, helping to direct our lives. To lose that can feel like being dropped in a foreign land with an illegible map.

The point of this isn’t meant to be bleak, but to first and foremost inspire compassion for those who are struggling with end of life issues around loss of control and identity, and secondly to offer a way to help.

There is a tool we use in hospice that is meant to directly counteract the downward depressive slide that comes from the loss of sense of self.  Officially it is known as dignity therapy, and it has been shown in research studies to increase dignity, sense of purpose, sense of meaning and will to live. It has also been shown to decrease suffering and depression. 
At its core, dignity therapy really is looking back at life in a narrative way.  It gives people the ability to tell their story through directed questioning.  When facing death, the time spent reflecting on the past allows a chance to reinterpret and reframe things.  In true dignity therapy, the narrative is recorded and transcribed through a series of encounters, creating a document to serve as a legacy that can be passed on and shared with whomever that patient wants.  The benefits then are two fold, the patient has a chance to look back at the important events of their life, which inherently adds meaning and dignity, but also creates something that will outlast themselves, thus easing the existential stress of non -existence.

Some examples of dignity therapy questions are, “What are the most important roles you have played in life?” “What are your most important accomplishments, and what do you feel most proud of?”, or “What have you learned about life that you would want to pass along to others?”

Although dignity therapy is a formal therapy, there is a message here for us all; telling the story of our lives, especially near the end is healing.  As family and friends of people who might be nearing the end of life, we can be empowered to informally do dignity therapy.  Our job is simple; show up, ask questions, and of course, listen. 

Giving Up

When we live in a performance driven, achievement rewarded, and success valued society, it only makes sense that endurance would be applauded.  Those are the stories we like to retell; the odds were against him but he never gave up. She could have walked away, but she hung in there and overcame adversity.

The antonym to enduring would be to give up. Giving up is an unpleasant word. It indicates a resignation to failure or surrender to something more powerful than us. Surrounding its meaning is the idea of abandonment, which frankly I think all of us dread.

These negative connotations associated with giving up are precisely why I cringe when I hear families and even health care workers use the term “giving up” in relation to end of life issues.

“We can’t just give up on Mom” an adult child will say outside of the ICU room of their ailing parent. The implications in such a statement are powerful, as it indicates a very black and white view of success. The line drawn with these words is that of life and death. Meaning life is the victory, no matter how grave, debilitated, miserable, or full of suffering it is.  When this is the goal, not quality of time, but quantity of time, then it is easy to see how the language of giving up can be used for anything that doesn’t contribute to the potential of added days.

What if this view of life at all cost, however, is not what the patient hopes for? While culturally, we have a difficult time discussing these ideas with our friends and families, it is something I have the privilege of doing daily.  The common sentiment I run into is that what most hope for at the end of life is the best quality of time they can have.  They don’t want things done to them if it doesn’t add to better days.  They don’t want to suffer and linger in debilitated states. 

With this in mind, then, when a health crisis presents itself, especially in someone with a progressive disease, the idea of focusing on quality and comfort over death delaying therapies is not at all “giving up”.  Indeed, it is not a failure to honor someone’s wishes, and more crucially it is not a failure to die. If death is failure, I hate to tell you this; we are all going to be big failures one day.  Focusing on comfort is not passive, it’s not abandonment. Healthcare workers don’t just walk away, but instead are very aggressive in taking care of patients. The difference of course is the focus of care; symptoms over disease.

You could even argue that if a patient hopes for the least amount of suffering possible with an end stage disease, that by continually intervening in that diseases natural progression, that this is the true giving up, by way of giving up on the patient’s own wishes and desires.

It all comes back to the definition of success. Let’s be sure we know what the hopes are before we speak of giving up.