Preparing for the Worst, While Hoping for the Best  

“Allan has cancer”, was all the voice said before dissolving into uncontrollable sobs.

Every now and then, I get pulled back into harsh reality when a grief once again touches me personally.  Al and Susan have been friends of mine for almost 30 years, one of these comfortable relationships where you don’t see someone for many months, but always pick up exactly where you left off.  But now, 40 years after exposure to asbestos in the workplace, Allan has mesothelioma.

It is almost superfluous to say that most people are ill prepared for the final days of their lives.  Even professionals such as health care providers experience uneasiness, and when you consider issues such as DNR (Do No Resuscitate) orders, and the legal, moral and ethical implications of patient and family choices, it is hardly surprising.  A survey completed in 1993 disclosed that 30 – 50% of attending specialists felt they had acted against their conscience in providing care to the terminally ill.  54% of graduates from medical schools felt their training regarding the terminally ill was “lacking and ineffective” averaging less than 3 hours class time on the subject.

I went to visit Al this week. We had a ball, reminiscing and laughing for an hour or two about some of the stuff we’ve shared.  I couldn’t imagine us sitting there, morbid and sad, enduring the lonely silence of not knowing what to say, because our relationship has never been like that.  It has been fun.  So why change it now?  Why treat him any differently than I have before.

We had our serious moments, of course, and “denial” was not the agenda but I learned something very significant. I think we need to decide if we are “living with”, or “dying from” our diseases.

Both concepts have merit.  In movies the last minutes of life are so obvious.  The music, the profound words, the meaningful glances all herald the impending moment of demise.  In real life many people live with disease for years before dying of them.  Most do not tend to die immediately, because sophisticated medical technology can keep us alive for so much longer.  Yet, all too often despite the obvious, the moment to say goodbye comes all too quickly and unexpectedly.  The chance to take that last trip, or get one’s affairs in order, or reconcile some outstanding issue we have been living with all slip away unfulfilled.

It is only when we realize we are dying that we turn our attention to living.

The following are some principles I have tried to practice and encourage when sharing with someone who is dying.

• Spend time with people who are important to you.
• Call or visit an old friend, and tell your story to those who will live on
• Accept compliments and some gratitude. Don’t make people wait till the funeral to say it.
• Say “I Love You”, “I’m sorry”, “Forgive me”, and “I Forgive You” often.
• Right old wrongs.
• Forgive yourself and seek to make things right in your own heart.
• Take a last trip or two.  Do things you’ve always wanted to do.  Find ways to spend your own life insurance.
• Create a legacy for those you care about – a letter, a tape, a video for children and grandchildren, or one for the significant dates in the future like, graduations and weddings which you may not see but at which you can be heard.
• Say goodbye (or “until we meet again”)
• Be at peace with the end to come and the uncertainty of when it may occur

To that personal list, as a professional I would add the following:

1. Decide specifically about your wishes for issues such as: DNR, Hospitalization and end of life care so that your treatment will be as close as possible to what you want.
2. Choose someone (power of attorney) to make decisions for you if you are too sick to make them for yourself.
3. Write a will, and get all the legal ‘stuff’ about finances and property in order
4. Arrange your funeral.  Talk to a funeral director about details.  If you don’t think about it now, others will have to when they feel least able to.  Plan your own funeral service and what you’d like your family to hear at that memorial.  Besides it’s a great way to get the last word.

It is important to balance the need to prepare for the worst with hoping for the best. We do not want to abandon hope or give up on the person. Miracles happen, remissions can occur, and there can be a host of possible outcomes in every situation.

On the other hand, whether we acknowledge it or not, we all die, and it is a wise person who lives their life, however long or short, with that certainty in mind. As the Book of Psalms reminds us, “Teach us to number our days that we may get a heart of wisdom.” It is when we finally confront the fact that life at it’s longest is still very short that we learn what are our priorities and what is really important.