WE NEED TO TALK

End of life directives are not enough, since we never know when we may be faced with serious issues associated with continued living, dying and death. We don't even know which issues might confront us -- where, or at what age. There may be decisions to be made about loved ones, or ourselves to which we've never given adequate thought. I have periodically encountered some of these various issues for a number of years both personally and professionally.

One experience from numerous others proved to be among the most challenging I've had professionally, while simultaneously being the most satisfying. The satisfaction was largely due to the fact the individuals involved were so open, honest, and most important, comfortable discussing the issues of continued living, dying and death with each other and those, such as myself, with whom they needed to interact.

I was comfortable in that situation and have been in others because of my own experiences with loved ones. I attribute this largely to my mother. She fostered such communication throughout my life in such a warm accepting manner without belabouring the issues. When life issues were at the forefront of decision making for her with me we were as prepared as we could be, though I'm not sure anyone is ever fully prepared for the inevitable when that time comes. We certainly can make the preparation easier for ourselves, loved ones, dear friends, enriching all lives in the process.

In my most recent experience, I was engaged in daily weekday sessions for about two months or so, with a couple who were involved in examining quality of life issues, considering ending alternative ways for sustaining life by means other than eating and drinking by mouth, use of supplemental oxygen for breathing. They were assessing their choices in terms of the means to safely continue life versus risk associated with using or not using these alternative methods.

The pros and cons of compromise for safety versus a desired life style was the basis for their considerations. The major questions centered around how best to receive nutrition and hydration, by mouth or other means, but the former also meant living apart from the healthy spouse in a more restrictive nursing supervised setting that might also lessen the risk of serious life-threatening health issues, or could even prolong life.

The greater risk was present by returning to a prior shared spousal living arrangement in a much less nursing supervised setting that also necessitated receiving nutrition and hydration by mouth. That placed the spouse at significantly increased risk of potential terminal health problems. What if the spouse's health became worse; would they want then to revert to the surgery again so he could resume alternative life giving support?

One of the references provided this couple is a booklet (also available in Spanish) I do recommend that was written by Hank Dunn called "Hard Choices For Loving People" that provides practical information regarding "CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness."

My involvement with this couple initially was directly related to maximizing an aspect of the ill spouse's physiological functional safety impacting their decision process, but I was drawn in by their clear desire for my inclusion in all of the matters. I had no hesitation in being included in their process as I always respond to the individual with whom I'm interacting as a whole being that encompasses their mind, body and spirit.

So, I responded in such a manner as to facilitate their conversation, sometimes just listening, other times asking thought stimulating questions, always providing them the real facts of his functional condition based on my assessments and perceptions in the area of my expertise. I made no effort to influence their choices or project on to them my own beliefs.

They made numerous plans from the certain to the uncertain decisions, only to rescind them, then alter them again as the ill spouse experienced changes several times in health status across a fluctuating full range framework with sometimes a promising, and other times a not so promising prognosis. Culmination of this whole process occurred in an ethics committee meeting with the couple, where they reiterated their thinking, then fully expressed their final decision with the clear knowledge that we all understood and respected their choices.

Living and dying issues are not always simple, even when advanced directives are
present, which is why I believe we need to talk more freely about this topic throughout our lifetimes. As I reflect on this whole experience, I recall this couple's disappointment
with the loss of intimacy from which all lives would have been richer, when they recounted their interaction with friends and loved ones. They said often those closest to them did not know how to talk with them, were uncomfortable with the subject matter on such a level, or simply could not allow themselves to discuss the topic of dying.

The Los Angeles Times featured an article by James Channing Shaw, a physician at the University of Toronto, in their February 28, 2007 Health segment, in a "My Turn" column that was titled "The acceptance of death can be a gift." His thoughtful comments relative to the choices some individuals encounter include:
"I would have to question whether an extra year or two of life would be worth the potential suffering that goes with treatment. Patients should be respected for thinking the same."

What also comes to mind is a post at "Time Goes By" written by Ronni Bennett titled "Fear of Death" I found the ideas expressed there quite powerful and meaningful. So did the couple about whom I've written here, after select writings, including that one, were shared with them at their request. I was particularly impacted, as were they, by that portion of the piece about half way through the post that begins:

"We fear not being. And that fear -- the most primal of fears -- is built into our DNA."

Later Ronni Bennett writes:

"...most people have made it taboo to speak of death in ordinary conversation even though it is the central problem of life. Have you ever tried? Even your friends will say, "oh, don't be morbid" and change the subject."

This is some of what the couple to whom I refer experienced. They were realistically facing the facts, others with whom they most cared were the ones with whom they wanted to speak of some of these matters, but were unable to bridge this conversational gap.

I find the specific matters in that post discussed above of most significance to the focus here. However, that whole "Time Goes By" post addresses even broader issues that bear serious consideration. I think these are all matters worthy of contemplation for both young people living for their future, middle age individuals determining how they want to live the second half of their lives, and older people engaged in enjoying their lives to the fullest. We all would be wise, as Ronni Bennett wrote there:

"...to pay attention to the changes the later years bring -- to see them, feel them, think about them and to talk about them and the mystery of life."