Driving home five hours from my parents' place after a tiring but satisfying weekend, Mary and I discussed quality of life for those with "terminal" illness, and she once again verbalized a term/concept which she had previously coined, namely "The Quality of Life Index" (QOLI). Think of it as a existential Dow Jones Industrial Average with quite personal ramifications.
This index can be utilized in ways both trivial and profound. While cooking dinner, a curious spouse might query the other, "How's your Quality of Life Index today, dear?" The elicited response to such a general question could be sarcastic, flippant, or thoughtful, and could very well engender quite profound and intimately soul-searching dinner conversation. There is obviously a great deal of room for interpretation by both interlocutor and responder, and wine with dinner may or may not appopriately lubricate the conversation.
Additionally, the QOLI can be something by which we somewhat objectively measure the actual quality of an individual's day-to-day existence. When examining the life of an individual with cancer, for instance, the QOLI takes on an entirely more dire connotation, and divers questions abound. How does chemotherapy impact quality of life? How are side effects altering lifestyle? Are numerous appointments causing strain on patient or caregiver(s)? Are emotional needs being met? Are their financial, transportation, or nutritional issues? Have end-of-life concerns been addressed? Is pain well-controlled? Does the patient truly wish to undergo treatment or simply wish to receive palliation of symptoms brought on by illness?
Quality of life is often associated with chronic and terminal illness, and is also frequently bandied about when discussing communities, cities, and regions of a state or country. In the face of a cancer diagnosis, for instance, the "community" of the family, friends, and loved ones of the patient are directly impacted by the diagnosis and subsequent treatment. Building upon this thought, one can look at the patient him- or herself as a "community" or country, replete with systems and processes which necessitate maintenance and attention. In the medical field, we often lose sight of these "small" areas as we rush ahead towards cure, flailing madly in the face of death. Do we sometimes forget quality of life as we railroad our patients through the labyrinth of pills and treatments? Do we forget to look them in the eye and ask, "Are you okay with this? Is this working for you?" Their humanity---that aspect of them which cries out for quality of life, quality of connection---can sometimes be left out of the medical equation.
So, in our rush through our personal lives---or through the crush of details filling our days as medical professionals---we must take time to assess, to contemplate, to digest what that elusive quality really is, for ourselves and our patients. If we cannot take the time to examine our own lives, to put our own proverbial houses in order, how can we assist our patients and clients to navigate those rocky and turbulent waters themselves?
With a close family member undergoing intense and life-altering treatment, our "family atom" is itself undergoing a transformational process. Not only are we examining our relationships closely, seeing the places where healing is needed, and mustering our strength for the days and months ahead, we are also looking at our loved one, attempting to ascertain his quality of life, and assist him to determine its trajectory. It is a moment of universal truth, of existential angst, and of all-too-human frailty. We will cut a swath across these well-travelled waters, hopefully leaving outmoded ways of being in our wake, taking on new, more empowered qualities when needed, and in times of relative calm, enjoying the view from the deck.
And you, dear Reader, as you sail along in your craft, floating in those same psycho-emotional-spiritual waters, how would you measure your quality of life and that of your loved ones? What objective number would you assign? What subjective phrase would you use to describe your plight? How would you come to terms with the reality before you? How, pray tell, would you characterize your life? It is a question which begs an answer, yet the answer can change from moment to moment.
This, then, is our charge: to never lose sight of the fact that our quality of life is subject to change, subject to the whims of circumstance, and equally within our grasp to direct to some extent. Let us all grab that rudder and steer for the shore which best represents our aspirations. And may those who have lost hold of that rudder---through illness or other unforseen events---be guided to make the choices which will serve only to improve and augment the quality of existence which is still possible. This is a tall order, yet one for which we can all sincerely pray, in hopes that all suffering individuals beset by the waves of misfortune or illness find their way to the shore wherein they will be embraced and their dreams fulfilled.