Monthly Archives: December 2013

Put ‘The Conversation’ On Your Christmas List

In my last post, I wrote about The Conversation Project and introduced you to the first part of their free kit to help get you thinking and talking about end-of-life wishes with your loved ones.  Several nights ago, I was pleasantly surprised to hear Diane Sawyer discussing The Conversation Project on the ABC’s World News. (Just remember, you heard it here first). I don’t know that we could call this movement a groundswell yet, but it is certainly a wave of sorts, and one that is long overdue.  Being an ornery sort who has a hard time going with the flow, you won’t hear these words from me often.  Jump on this wave and ride it! 

Let me tell you why I feel so strongly about this.  When I was 29 years old, my brother Jack died.  He had left our home state to attend college when I was eleven.  Ten years later, I followed him to live in the same city in Kentucky.  Jack had a brilliant mind, was eight years my senior, and I adored him.  He was my go-to guy for direction, encouragement, and reassurance.  He was only 37 years old when he was diagnosed with a liver disease that killed him within weeks.  I didn’t know his condition was terminal until 3 days before his death.  During that time, I was confronted with decisions I was not prepared to make.  As specialists streamed in and out of his room, I was asked to decide about a liver transplant, whether I wanted him resuscitated when his breathing and heart stopped, and whether or not a priest should be called for last rites. It seemed there were decisions to be made with each caregiver that entered his room and I had to make them while I was still struggling to process the news that he was dying.  Then there were the phone calls I had to make to my family.  I was haunted by my sister’s screams and my mother’s pleas for a better outcome for years to come.  My family arrived on a Friday afternoon, in time for Jack’s passing the following morning.  We had a memorial service in Lexington for friends on Sunday.  The next morning, my family returned to Wisconsin with my brother’s body for a proper Catholic funeral and burial.  Naturally, I was devastated and spent the next several years gripped with sadness and the anxiety that accompanies overwhelming self-doubt.  The sadness I could understand and accept but the anxiety was totally baffling, frightening, and, at times, debilitating.

I had just survived my first year after losing Jack when I met Joe through some mutual friends.  He was drop-dead gorgeous and I was relieved to learn he was gay so I could relax and not act goofy around him.  We became fast friends, and then the bottom dropped from his life when he learned his partner of 8 years had AIDS and he himself was HIV positive.  This was the eighties and many people were terrified of AIDS.  Joe’s large circle of friends quickly dwindled.  His partner died two years later.  My friendship with Joe deepened as we saw one another through some tough losses.  He had become my new confidante.  Then, just 6 years after losing Jack, Joe’s AID’s related illnesses got the best of him.  I sat with him and held his hand when he died and my heart was broken.

I’m not seeking sympathy here.  These men immeasurably enriched my life and I feel grateful and fortunate to have known them both.  I want to contrast their deaths to demonstrate how an unplanned death can interfere with the survivor’s grief and ability to move forward.

My brother Jack and I never talked about what we wanted to happen if some devastating illness came our way.  We were too young to even consider having the discussion back then.  It simply wasn’t done.  But the decisions I had to make during his illness left me haunted with questions and doubts for years to come.  Why didn’t I notice sooner that he was ill?  Should I have pushed for more aggressive procedures to save him during that final week?  Did I do everything he would have wanted?  Did I call the right people to come?  Was the memorial service as he would have wanted?   Then there was the matter of settling his affairs, emptying out his apartment, and distributing his few prized possessions.  I spent months questioning and doubting my decisions while grappling with unsolicited advice from people who offered no practical help.  After a failed attempt to put it all behind me before properly grieving, I developed some debilitating anxiety.

In contrast, my friend Joe knew he was going to die.  There was no cocktail of medications like we have today for people who are HIV positive and death was the virus’ only remedy.  It was not Joe’s way to skirt issues.  He interviewed doctors and chose one who would treat him like a partner as they wove their way through the symptoms and remedies of opportunistic illnesses that were hallmarks of HIV at that time. He met challenges head on and he didn’t keep his thoughts to himself.  He talked to me about how he felt about dying.  I told him how much I would miss him and that I didn’t want him to go.  He wrote his will, planned his funeral, chose his music, and made a small list of invited guests.

I experienced a profound sadness after Joe died, this time, unaccompanied by anxiety.  It was a clean loss, unblemished by crazy-making doubts and second thoughts. I didn’t have to wonder if I had done the right things because those decisions were made by the only person who can know.  My sadness was just as deep but this time I was able to travel through my sad feelings freely, unhindered by doubts and guilt that plague unplanned deaths.

I don’t know that we can lose anyone we truly love and not experience some measure of guilt. Perhaps some guilt is inherent in all mourning simply because we can never be perfect for another.  But heavy guilt, laden with anxiety over decisions survivors should never be expected to make for another is not necessary.  A well-planned illness and death will provide your survivors with the freedom to miss you deeply and thoroughly and then move on.

Christmas is ten days away.  You’ll likely spend some time over the holidays with people who are by biology, by law, or by choice, your family.  Please do yourselves and your loved ones an enormous kindness and start a conversation about what you would want if you became seriously ill and how you wish your life to end.  You don’t have to have all the answers when you begin because hopefully, this will be the first of several conversations you’ll have between now and your ending time.  Talk.  Listen.  Then talk some more.  Just get those words out there for everyone to hear and consider and move around in the rooms of their mind.  If an uncomfortable family member suggests that this topic is too morbid for the holidays, gently remind him that none of us gets out of here alive, that death is a fact of life, and keep the conversation going.  Take the lead and guide your loved ones through those first baby steps.  One day, they will appreciate your guidance in beginning this journey to a good death.

A Generous (and Free) Gift That Keeps on Giving

I realize I run the risk of losing your readership to this blog forever but I’m going to broach this subject anyway.  The holidays are an opportune time for families to discuss their health and end-of-life wishes.  I know these are difficult topics for most of us to talk about. We seem to dread this conversation even more than the one we were supposed to have with our kids about sex.  But, it’s absolutely essential if we want to live on our terms to the very end.  Avoiding it won’t keep you from getting sick and dying and it will burden your loved ones with the task of guessing what you might have wanted.  Siblings don’t always agree on what is best for mom or dad, and these arguments lead to hurt feelings that can affect relationships for a lifetime.  End of life decisions are as varied as the people who make them.  They shouldn’t be left to doctors, nurses, insurance companies, or your kids.

If you don’t think most people need a push and some guidance making those end of life decisions, consider these facts:

  1. 60% of people say they believe that it is “extremely important” to make sure their family is not burdened by tough decisions.  Yet, 56% of people have not told anyone about their end-of-life wishes.
  2. 70% of people say they want to die at home.  Yet, 70% die in a hospital or nursing home. 
  3. 80% of people say that if they’re diagnosed with a serious illness, they’d want to discuss end-of-life care with their doctor.  Yet, only 7% actually have that conversation.
  4. 82% of people say it’s important to put their end-of-life wishes in writing, and they’re right.  Yet, only 23% have actually done it.

I don’t believe people avoid these decisions and discussions simply because they’re afraid of death.  Studies indicate that what people fear most about death is what will happen to their loved ones after they’re gone. That being the case, it makes sense to protect our survivors’ futures and to plan our life and death well.

After you break through that fear and avoidance barrier and are ready to make some decisions, then what?  That’s where we feel stuck again because “who ya gonna call?”  The doctor?  A lawyer?  Your kids?  No, no, and heck no!

The Conversation Project (http://theconversationproject.org) has a free, step-by-step kit to get you started.  They begin by providing the statistics I’ve noted above, and then proceed to guide you gently and painlessly through the process. It’s absolutely free with no strings attached.  There are two components you can download and print.  The first one we’ll focus on today.  It is the Conversation Starter Kit.

It begins by asking you to simply think about how you would want things managed in the event of a serious illness and noting your thoughts.  There are questions that will help lead you through the process.  For example, do you want to know every detail of your illness and treatment, every step of the way, or do you prefer to just go by whatever your doctor thinks is best?  Most people will find themselves somewhere in between.  The key thing to remember is that this is about how you feel and what you want.  You’ll need to turn a deaf ear to that internal voice that wants you to think about what your spouse or kids might want.  There are also questions about how involved you want others to be in your care.

Keep in mind; this isn’t a legal document of any sort.  It is simply a few worksheets containing good questions to help you decide how you want things managed in the event of a serious life threatening illness.

Once you’ve taken some time to understand what you want, the final stage is about action.  Now this is a critical step that, if ignored, leaves all your preparation meaningless.  You’ve got to tell someone about your decisions.  You decide about who (yes whom), when, and where you want to have the conversation so that your family knows about your decisions.  There are even suggested starter sentences to help you get those difficult first words out, such as, “I’ve been thinking about some things and I’d appreciate your help.”

Once you’ve had the conversation, the kit lists some legal and medical documents you should know about to ensure that your wishes will be honored.

Please go check this out.  It might be the best 10 pages you’ve ever printed.

http://theconversationproject.org/wp-content/uploads/2013/01/TCP-StarterKit.pdf

P.S. The second component covers the conversation you should have with your doctor.  We’ll cover that here in the near future.