An edited version of the following originally appeared on the website Everyday Health.
Like so many other medical professionals, I felt voiceless in the face of a gargantuan healthcare non-system built to do things to people, rather than for people. But after a decade of hospital practice, my “cry for help” looked slightly different than the typical midlife crisis: it involved the creation of a somewhat ridiculous blue-scrubbed rapping doctor alter ego. “ZDoggMD” could drop mad truth via YouTube in a way that “Dr. Damania” never could. I had finally found my voice.
But with “Ain’t the Way to Die”, about the suffering caused by our failure to think and talk about our end-of-life wishes early on, I was moved to see that thousands of others were able to find their voices, too. The response, an outpouring of painful and poignant reflections across social media, spoke to the nature and scope of what physicians have long known is our not-so-secret national shame. As one commenter on our blog observed:
“America is the best place to live, and the worst place to die.”
The emotional stories left in response to our video evoke reality better than the video itself ever could. There were the families lamenting the immense burden and guilt of having to make decisions for loved ones who never expressed their wishes in advance:
“He was ready to leave, we were not ready to let him go. Our selfishness, our sorrow, our love didn’t want to let go. He should have left sooner, but we could not release his hand to send him on.”
Then there were fellow healthcare workers sharing all-too-familiar experiences. They told of “hating themselves” after being forced to administer such tortures as rib-shattering CPR and mechanical ventilation on elderly patients whose families refused to let go, not understanding the horrors that our “do everything” approach can inflict:
“She came to me without any sedation, eyes bulging, screaming without a sound through the breathing tube, grabbing at whatever she could. I had to tie her hands to the bed and sedate her heavily so she wouldn’t have to remember anything. Then I pushed my way out of the room and broke down in tears in the middle of the ICU.”
But the stories of “good deaths,” of times when dying was treated as a crucial element of living, a source of peace and closure for patients and loved ones—these truly light a path to a better way:
“As a nurse-midwife, I have had the privilege of holding many babies as they take their first breath and greet the world; being able to hold my mother as she took her last breath, in such a peaceful way, was no less of an amazing privilege.”
The common theme of such stories of hope and peace in the dying process was clear: it all begins with a conversation. It might be with a loved one, a friend, or a trusted medical team member. Or it might be a conversation we have with ourselves: what matters to me at the end of my life? What compromises and interventions am I willing to accept, where do I want to spend my final days, who will I entrust to make decisions for me when I can’t?
To consider these questions during calm times, and communicate through open, ongoing discussions with those who matter to us, is a gift. Not just to ourselves, but to those closest to us who would otherwise suffer guilt and agonize in indecision:
“Our son was about to go through full body radiation on top of overwhelming chemotherapy — a last ditch effort to cure his relapsed AML. We had a serious conversation that day, in the office of the radiation oncologist, who had bravely brought up all the grave concerns that come with this kind of treatment. Solemnly, maturely and with remarkable self possession, my son spoke plainly on a subject nobody his age should even be aware is an issue. He told us he did not want to be kept alive on a ventilator if there was little hope for meaningful recovery. Meaningful recovery for him meant the ability to go to school, to have a girlfriend, to look to the future with hope of an independent life. A mere four months later, we had to make the decision no parent should have to make and silenced the machines keeping the shell of our son alive. Knowing his wishes some days is the greatest source of comfort I have. So many people deny that death comes and do not want to have to make these decisions, but doing so may be the final gift of peace for your family. If a 13-year-old can face this and discuss it, so can you. Do it now.”
How? We need to talk about dying. The Conversation Project offers one approach to starting that crucial first dialog with your loved ones. When you are clear on your decisions, fill out an advanced directive to document your wishes and your choice of a trusted person to make decisions for you when you can’t.
Find your voice and make it heard, now.
Right around the time I released Ain’t the Way to Die, I received the following email sent to the friends and family of a close friend and his wife, who had been battling metastatic cancer at too young an age. Just days after sending this, she passed away at home. He’s given me permission to change the names and share this. It beautifully illustrates the painful complexities that accompany caring for a loved one who is dying:
Family and friends,
In October of 2013 my wife Jane underwent endoscopic surgery to drain 1.5 liters of fluid built up between her lung and chest wall cavity. During this procedure her chest wall lining was biopsied to determine the nature of what appeared to be microscopic tumors. The tumors were not benign and the big ‘C’ entered our lives.
What followed was too numerous to count CAT scans, MRIs, x-rays, blood tests, and side effects. After 10 months on hormone receptor pills, months of vigorous chemotherapy treatments and localized radiation modern medicine is unable to successfully eliminate the spread of the disease.
What lies ahead for us and all of you is the process of making Jane as comfortable as possible for her final transition from this life to the next. We have asked all the questions, looked at all our options and are working though the inevitability of her time left with all of us.
Be patient. This is new for us, while we pride ourselves on being ‘above the fray’ there will be decisions, actions and communications that do not meet your expectations. This is not intentional. It just is.
What we ask from all of you:
Jane has good days and not so good days. She has asked me to be the primary point of communication with everyone to manage her time and energy. Please do not call/text Jane directly, and please do not just stop by. I realize this will be close to an impossible ‘ask,’ but she needs everyone to respect her wishes as it is her life, her decision and we all have to respect her decisions.
Time. It is impossible to predict a ‘when’ or ‘how long.’ Suffice to say it is not as long as we hoped for, given the prognosis. Please don’t ask her, she does not know, no one does, and the end is not our focus, her life is.
She is in a lot of pain. The pain medication does not forestall the progress/pain of the disease which means physical contact of any kind causes excruciating pain. Translate that to: not touching her and definitely no hugs.
This next one is a tough one: Keep in mind there is one of her and many of you. Her physical being cannot absorb and recover from strong emotional events. It’s okay to be sad, grieve and feel the loss. She can’t help you through it, like she did for so many in the past, as that is too stiff a headwind for her. Be present, be positive, be her Mother, sister, brother, niece, nephew and friend.
Jane has asked that this be a private family and friends process. She specifically asked this not be a social media event, fodder for blogs, fundraisers, discussion forums, posts on your Facebook page, she is a private person and asks that you respect this.
We need positive vibes. We do know each person will process this unimaginable event in their own way, however please respect her time and energy as she is the best and deserves to be remember and treated as such. This is not a time of grief and agony for us. We are blessed in so many ways. All the parts of life we shared with many of you and have felt, seen, smelled, hiked, biked, ate, drank add up to an insanely wonderful time together. It is sad, loss is not easy, please remember to remember the best moments in her life that you shared. You know the good times, the really good times.
Strive for normal. The most mentally and emotionally draining interactions are when someone treats Jane as ill or infirm. She’s still got it, so tread lightly on trying to help with your own comparisons, verbalizing similar experiences, and asking her if she needs ‘help.’ She’s tough, she’s got this.
No pictures. She does not want her final time with us documented. Keep the pictures you have as she is physically not the person many of you know, or have seen in the past.
Faith. Jane and I have ours and each of you have your own. We know people are praying for us. We have friends of all faiths and religions and appreciate everyone who calls on their faith to support us, understand, comprehend, cope and process this. If you see her, Jane asks that she not be reminded of your depth of belief, the sincerity of your prayers, only that you are present as family or as her friend.
I wrap up by thanking all of you, my life would be diminished if I did not have the brains, and if she hadn’t lost hers long enough, for me to talk her into marrying me.
“If I just lay here. Would you lie with me and Just forget the world.”
Sent from a mobile device w auto korrect
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