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.

4 thoughts on “Put ‘The Conversation’ On Your Christmas List

  1. Jim

    I liked the comments about Jack and your friend and realized for the first time what you must have gone through. I’m proud that you were there for Jack. I do however disagree that we should discuss, at Christmas, what we would want when we pass. We will be getting together with our kids and grand kids to celebrate the season and enjoy their company. There is plenty of time after the holidays to discuss our wishes. Just my opinion.

  2. Jan Scherrer Post author

    I appreciate your point, Jim. For people who see their families on a regular basis, having this talk during a holiday gathering isn’t necessary, as long as they set up another time to do it. The push to have this discussion during the holidays comes from the fact that for many, that is the only time the family gets together. It’s also not a talk you want to have with children sitting at the table. This should be a conversation for the adults in the family. Thanks for your great feedback!

  3. rogerhursh

    A great essay. Thanks Jan.
    As an emergency doctor, who has experienced also the deaths of my parents from old age, I would like to add a few things.
    1. A living will usually discusses what are your preferences under certain circumstances….for example, requesting no CPR if there is a ‘known terminal disease’. Or no artificial nutrition ‘if death is expected’. Etc. This is very helpful, especially the no CPR order. Make sure all caregivers are aware if this is in place.
    2. But many times there is no ‘known terminal disease’ (even defining this can be problematic), just a gradual loss of strength and function, as my elderly parents experienced. You may gradually become confused, or too weak to walk, or don’t recognize your family anymore, or become non-verbal. Then when you get pneumonia or have a heart attack, what is to be done? Should you be taken to the cath lab for the heart attack? Should you be taken to the ER for your pneumonia? Should you be given iv fluids when you stop eating and drinking? Or alternatively, should you be given morphine under these circumstances, knowing it will hasten the end, but provide precious comfort and alleviate a patient’s anxiety? Caregivers must know your preferences. Consider asking for ‘hospice status’ for a relative in the circumstances mentioned above. There may be many benefits, like special hospice visiting nurses, wheel chairs, beds, etc.
    3. Another common scenario to discuss with your loved ones is that of the ICU patient. Often organs shut down after one is admitted to a hospital with a serious illness. Organs like kidneys….does one want dialysis? There is suffering and malaise in patients on dialysis. It is not benign. Or lungs/heart fail….does one want intubation and a ventilator…and if so, is there a limit to the time on a ventilator? One can spend weeks or months suffering on a vent, often only to die. Is it worth the suffering for you? There are many other scenarios like this. Do you want to spend the last few days or weeks of your life in an ICU if you are old and have had a full life.
    We get ‘three score and ten’ years or so, and all of us must die. We should try to make our deaths good ones, as much as we can. I would recommend you talk about the above circumstances, at least in general terms, about how aggressive to be. Also ask your family to make sure you are comfortable at the end, with morphine or similar medications used liberally even though it may hasten your death.

  4. dgrijalva2013

    As I’ve shared with you over the years Jan; when I go, please make sure you toss in a package of pens and a stapler. I never seem to be able to find either now that I’m a mom. And in case I haven’t told you this one, do not bury me in any dark colors! Dark colors age me. Armando jokes with me that if I were to go first, he’s going to be in a bind. I handle the finances and he cannot understand my handwritten notes. He says they’re a mess. I’ll joke back and counter why he’s not going to go before me, and then the subject is changed. When I visited with Mr. Smith last month, who is 98 years sharp as a whip, he told me as he has for many years now, that he is ready to go. His burial plans have been set and he is firm: no flowery good byes in the newspaper and no memorial services. People have better things to do with their time. He says anyone who knows him knows he’s had a terrific life, now let him go rest at sea. Because I admit I am selfish, my reply to him is he still has a great many good years ahead of him. He smiles and changes the subject. Whether it’s in a joking manner or not, Jan, thank you for this gentle push to be reminded of the importance of talking about the inevitable. Love you!


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