David’s Death by VSED
The Origins of Fully Informed Conversations
By Roberta B. Ness, MD, MPH
A Good Death?
David snuggled next to me, his hand gently resting in mine, as we listened to the haunting timbre of Bach’s Chaconne. The warmth of his body next to mine, his distinct smell of Irish Spring soap and coffee, slowed my pulse. I felt as relaxed as I ever did those days. Sadly, the moment passed quickly.
“I need a way out,” David lamented. “We need to talk about this.”
“I can’t,” I pleaded, shaking my head vigorously. “Please. Not again.”
For months, David had been fixated on how to end his life. He was relatively young – 76 - and his days still held quality. But three years earlier he had been diagnosed with semantic dementia, a rapidly progressive variant of Alzheimer’s disease. It started as oddities in his word choice and circumlocution in his sentence structure. In another person, this may not have been as obvious. But David was the consummate intellectual, a graduate of Columbia and Yale, a former English teacher turned academic psychiatrist. At first, he simply changed the word order in sentences such that they sounded a bit forced.
Now, three years later, while trying to tell a story, he halted in search of a word like “desk” or “wallet”. His brow furrowed. He closed his eyes and buried his chin, struggling. After a few moments, defeated, he shrugged, “just forget it.” Our conversations shifted from discerning commentary on King Lear to a simple accounting of daily rituals. “You can’t keep wanting to be with me this way,” he often sighed. No reassurance from me seemed to alleviate his angst.
It wasn’t just his speech that had been affected. After scraping his car on a curb, then a pillar in a parking garage, David agreed to turn over the car keys.
David lost the ability to follow movie subtitles so our frequent enjoyment of international movies at the Museum of Fine Arts became a thing of the past. I’d stopped trying to mutually plan upcoming events because sequencing utterly confused him, so I’d reverted to telling him each morning only what to expect for that day. He’d wake me early in the morning, frantic that someone had snuck in overnight and stolen his wallet. But when we looked for it, it remained in its usual place.
The thing David most cherished was practicing the violin. He’d started playing about ten years previously and become passionate about mastering the instrument. He practiced two and three hours a day. His initial tortuous shrieks eventually turned into euphonious music. Then one day, I noticed that he’d not played in a week. I asked him about it.
“My violin case is broken and can’t be opened,” he replied.
I pressed the latches on each side of the lock and slid the metal fasteners apart. “Oh,” he said in surprise. “That’s not how it used to open.”
David’s dementia was the cruelest irony. It ripped away the flesh from his essence. It robbed him of what he valued most – his mind. A man whose identity was defined by boundless curiosity, mental acuity, and a need to help others now told me endlessly that his life had become futile and useless. Worse, his awareness of his own slippage was agonizing for him.
Finally, we had the discussion about “ending it”. David was resolute. He couldn’t stand the idea of ending up in a nursing home. He begged me to help him act soon before he lost the ability to control his destiny. For two or three months, we discussed trying to find oxycodone or fentanyl. I secretly solicited the grown children of my friends. But, amid an opioid epidemic, I simply couldn’t source the stuff.
David had almost no legal options. I was all too aware that had I found and possessed lethal medications, I’d be putting myself at risk of incarceration. We would have considered moving to a jurisdiction with Aid-in-Dying, but in all 11 locales that have adopted such laws, a patient must be certified as having only six months to live. David would never qualify. He’d remained in remarkably good health and with a mother who’d lived past 100, he had many years of life expectancy.
Finally, I told David that the only option I could think of was to voluntarily stop eating and drinking (VSED). Upon hearing this, instantly his face lit up and his shoulders relaxed. “That’s a wonderful idea!” he exclaimed.
Immediately our world became a whirlwind of planning. David instructed me on the who, where, when, and how. I read every VSED book and blog and narrative I could get my hands on. David got an out-of-hospital DNR (Do Not Resuscitate) order from his doctor (called a POLST) and completed a notarized advance directive that named me as his healthcare power of attorney.
We coordinated schedules with our son and daughter to be with us for the duration and we hosted visits with his brother and best friend, the only people with whom David shared his plan. Otherwise, his decision to VSED became a strict family secret for fear that anyone else might try to stop him.
We went together to see David’s long-time psychiatrist who empathetically and emphatically supported David’s desire to accelerate his death. “I wish there was an easier way. We treat our pets better than we treat our elders,” she said. Then, she crossed the room and hugged him, and we all cried.
On the way home, David teared up again. “I’ve never heard of a psychiatrist doing that,” he remarked.
The day before David started VSED, we called the largest hospice program in our city. The newly minted consulting nurse looked confused. “I’ve never heard of that,” she said. She called her supervising physician and then the hospice director. Descriptions of the process of VSED left me fearful that in the absence of palliative assistance, David’s journey could be unnecessarily harsh. Thus, while we waited, I squirmed with the kind of anxiety I’d had when waiting to hear about a grant application.
“No,” said the supervising physician. “No,” concurred the hospice director. “Your husband does not meet our admission criteria. He has not lost his activities of daily living (ADLs) and he is not within six months of a natural death.”
We then tried palliative medicine programs. They did not even have the courtesy of responding. The kids and I were on our own.
Twelve days of fasting later, David died. It was the most painful 12 days of his life and mine. Every day, I’d wake up with the thought that almost surely today he’d give up. How could he continue with such resolve as his lips became desiccated, his tongue parched and sore, his muscle strength ebbing? He joked about wanting food, but never requested it.
When I inquired, “Are you thirsty?” he looked at me like I was crazy. “Are you kidding? Yes.” But he didn’t ask for water. Lip moisturizer, brushing of his teeth and gums, and swishing mouthwash fortunately gave him some relief, albeit temporarily.
For the first week, he asked to take walks, first we took our usual strolls along the bayou. Then his strength allowed only excursions to the corner. Then he could only wobble around the house. Hour after hour, he, the kids, and I engaged in reminiscing about shared joys (to the degree he could still relate stories). We all lay in our king bed together snuggling, listening to his favorite classical music, looking through photos, reading him stories, and singing to him.
Surprisingly, he seemed calmer than he’d been in months. Over and over, he reassured us. “I’ll die, but my love will live on.”
Downstairs from where David lay, we had a little backyard choked with weeds. In the first two days of David’s VSED, the kids and I raced to turn the space into a beautiful garden. On day 3, we revealed our gift, an enduring celebration of life. Smiling and clapping with glee, David took a seat and for a long time, remained transfixed. Every day thereafter, he asked to spend time in the garden.
The second week of David’s fast was a stark contrast to the first. As he got progressively emaciated and feebler, he lapsed into periods of agitation and delusion. The benzodiazepines he had on hand from his psychiatrist no longer had any effect since he could not swallow. I asked her to prescribe opiates to calm him but she did not have the correct medical drug license to do so. He called out for his mother and became confused about where he was. He begged for water. We had discussed how to handle this with him in advance and, fortunately, it took only gentle reminders about his goal to calm him. But after he died, these unanswered pleas haunted me.
Our biggest concern that second week was David’s attempts to climb out of bed. He’d become so weak that his legs could no longer hold him. But he seemed to gather the strength of an ox as he fought to scramble over side rails. If he broke a hip, then what? We had no choice but to take shifts physically restraining him 24-7.
Finally, wondering how we could get through any more of this, I again called hospice. Now that he was at death’s doorstep, they agreed to admit David. They provided benzodiazepines that dissolved under the tongue and liquid morphine to relieve his agitation. With these, David and we found peace. During David’s last splash in the tub, infused with the lemony smell of bath balm and surrounded by flickering candles, he said, “this is joy!” In his confusion, he took one of the rubber duckies and tried to wash himself with it. Then, carried back to bed, he slept.
The next evening, David became unresponsive, and 24 hours later he slipped into death.
After David took his last agonal breath, I lay down next to him as I had countless times in our 40 years of marriage and rested my head on his chest. It no longer rose and fell in its soothing rhythm. The heartbeat that had always calmed me was no more.
I whispered to him, “Was this a good death? No answer.
Only I, a witness to his death, could hope to answer. I murmured to him, “It gave you control over your dignity and your destiny. It was fearless, courageous, noble. You gave us a priceless opportunity to bond. And yet. I can’t get over your needless suffering, the months of good quality life you sacrificed. The days of unnecessary delirium at the end. I wish that we’d had help with your VSED from the doctors. I wish we’d had more choices. Was yours a good death?”
I still wonder.
How David Inspired Fully Informed Conversations
I wrote this story shortly after my beloved husband, David, took his life by voluntarily stopping eating and drinking (VSED) in September of 2023. Writing helped me to deal with my grief. It also helped me vent my anger.
The question posed in the story is: was it a good death? I still ponder this, but I suppose the answer is, “it depends — good for whom?” David got what he so ardently desired — a relatively quick exit from a life of existential torment. His valiant decision guaranteed that he would not become a burden to his family. We, his family, however, did not get what we wanted for him — a gentle exodus. I remain convinced that his passage could have been eased by palliative support from the medical community. Support, however, was not forthcoming. The hospice director explained his refusal to help based on lack of experience. I wonder, too, if the man held a misguided notion that VSED is suicide. Whatever the case, withholding care caused needless suffering.
After I put David’s story on paper, I realized that writing was not enough. Neither was waving my fist and crying out to the heavens.
I decided to do something.
I wanted to smooth the path for patients and their families facing the end of life. Thus, was born the non-profit foundation, Fully Informed Conversations.
As the mission of Fully Informed Conversations evolved, we decided to provide you - patients, families, and healthcare providers - with a full toolbox of information and resources for ending life gracefully. The voice agents Fiona and Victor became a central feature to help you in your end-of-life decision-making.
I hope that Fully Informed Conversations can aid you and your family in your end-of-life journey.
