Friday, July 12, 2013

A Pill for Will

We have pills for just about anything. We have pills to make our blood pressure come down, pills to make our hormones go up, pills to bring our sugar down and pills to make our mood go up. We take pills when our body hurts, and we take pills when we can’t sleep.  We take pills to help us breath, to help us heal, to help us eat, and to help us not to eat. 

There is at least one thing that we have no pill for.  In fact, if someone could invent a medicine for this, they’d be an instant millionaire.  I’m not talking about a pill to cure cancer, or a fountain of youth pill, but something much more basic; a pill to increase a person’s will.

It’s inherently obvious, but worth stating, that for someone to want to get well, they must have the desire to get well. This inner fire or zeal to conquer challenges is what we call will power.  Although expected to have an impact in such things as sports, business success, or even dieting, we tend to forget that someone’s will has enormous impact on end of life issues.

It can be startling for families to watch a loved one’s health ebb away, especially if a doctor insists that medically everything is fine.  “I don’t understand”, they’ll say, “the tests came back negative, yet Dad doesn’t want to get out of bed!”  It seems incredulous that someone wouldn’t at least try to live.

This frustration to instill in someone else the will to change or the will to live is aggravating, because it is out of our control.  Despite our cajoling and encouragement, no argument seems good enough to increase that inner oomph. 

What can we do then? First, understand that whether right or wrong, thousands die every day simply because they’ve given up.  Doctors can’t write that the cause of death was ‘loss of will to live’ so it is sometimes written as ‘failure to thrive’ but more often another disease is listed, though inwardly we know that the patient’s lack of desire to go on played a large role in their death.

Second, it’s important to know that deciding you are ready to die isn’t the same as being depressed.  While depression can certainly interfere with one’s stamina and enthusiasm for living, there are scores of individuals who just decide they are done with life, and they are not at all depressed.  It is crucial to tease out depression, though, because it can be treated.

Lastly, and most importantly, we can develop empathy.  There is always something at the heart of giving up. Sometimes a person is tired of dealing with chronic pain, other times they are terrified of living alone, or of falling and being helpless.  At times, a person may feel they are being a burden, or they’ve lost their life-long love.  When we are open to hear why someone has lost their will, if nothing else it inspires compassion. 

It is okay to continue to try to change our loved one’s will, but ultimately it is their choice, and our lasting gift should be respect . . .at least until that pill gets invented.

Readiness and Dying

To parents the concept of readiness is very familiar. The idea implies that there are certain milestones a child will not achieve until they are ready. I have heard the term associated with first words, toilet training, writing the alphabet, and reading. It helps explain some of the frustration parents go through when struggling with why one child could write their name at 3 and another sibling exposed to the same environment didn’t write their name until 5. 

There is another type of readiness that I see frequently surrounding end of life issues and that is the readiness of patients and families to accept a prognosis.  The futility parents feel with wasted efforts trying to get their toddler to write the letter ‘E’ when the child only knows scribbling, can feel akin to the frustration medical personal and family members feel when trying to get a patient to realize how close to death they really are.

There is tension when two parties have different perceptions on what the reality of a situation is. Usually the more logical, realistic person feels the need to convince the more hopeful and potentially even delusional person, of their faulty views.  “Mom has to realize that she’ll never be able to take Dad home again!” or “Doctor, you must convince my aunt that she’s dying!”

There are two questions this brings up. First, is it really necessary to force someone to accept reality on their death bed? And secondly, is it even possible? It is with the later that the concept of readiness plays a role. If a patient, or even a loved one, is not ready to acknowledge their prognosis, then frankly it is wasted energy on anyone’s part to try a forceful approach.

In such cases, I have found it helpful to do the opposite. By simply respecting their perspective, thus taking away the battle of wills, a safe place is created by which time becomes the ultimate revealer of truth. In other words, when someone in denial no longer must spend all their energy convincing the world of their perception, suddenly that extra energy and time can be spent reflecting on the reality of what is right in front of them.

In our impatience, we often want this process of acceptance done immediately; but readiness is still at play, and despite all our efforts at respecting, arguing, teaching, or waiting, the truth is many still will never get to that place of acceptance.

Which leads us to the first question; is it really necessary to know we are dying?

I have been with patients incapable of knowing their prognosis due to dementia or other serious illnesses. Those deaths have been just as peaceful as those in whom knowingness existed. I have also sat with patients who were very capable of reality, but because of unreadiness, did not accept that truth. Their deaths still occurred, but often were not as peaceful as others.  It may not be necessary, however, I have watched as hospice has supported patients and families, moving them to readiness. In these individuals the transformation from denial to acceptance can be as rewarding as watching my kindergartner learn to read.