vsed primer
In Control: A Primer on Voluntary Stopping Eating and Drinking (VSED)
By Richard Abrahams, May 2015
My mother died peacefully at the age of 93. For 92 of those years she lived a remarkably illness-free, independent life, always maintaining that if she couldn’t live the way she wanted—at her condo and in control—then she would find a way to end her life on her own terms.
As her son, health proxy and power of attorney, I didn’t really think much about it until my sister and I had trouble reaching her on a Friday night in February of 2014. I lived in Boston and my sister lived on Long Island, so we typically called around 6 pm a few times a week to see if she was all right. On this particular Friday, my mom did not answer the phone. It wasn’t unusual and we both figured that she was out playing cards or had gone to the movies with a friend. On Saturday, we called again and there was still no answer. Again, my sister and I thought she was out and figured that nothing was wrong.
Part of that thinking was influenced by the safeguards we had in place since my father passed away four years earlier. In an emergency, all mom had to do was press the medical alert button on a pendant that she wore around her neck to be instantly connected to a response center. Her neighbors also knew to check on her at the end of a day if the daily newspaper that was delivered every morning was still lying outside her front door.
On Sunday afternoon, my sister and I called again. There still wasn’t any answer, so my sister called a neighbor who alerted the county sheriff. Fifteen minutes later, mom was found lying on the bedroom floor with a bed sheet wrapped around her. The medical alert pendant had landed in such a way that she couldn’t push the button. She was also very weak and dehydrated, but surprisingly lucid and conversational.
I flew down to Florida from Boston the following day. Mom was now in an intensive care unit (ICU) in the Delray Medical Center. Her nurse explained that she had suffered a mild stroke, and with time, would probably recover. After several days in the ICU, she was moved to a regular room, and then to Pinecrest, the rehabilitation center connected to the hospital.
Soon after, my mother started a daily routine of therapies: speech, physical and occupational. She had to use a walker with aide support to move around. She had difficulty pronouncing and remembering words. She was barely able to pick up a pen to write her name. She had a catheter bag strapped to her leg because she had lost her ability to urinate on her own.
During her three week stay, my mother outwardly never wavered in her commitment to regain control of her life, earning the admiration and respect of the medical team for her calm demeanor and work ethic. Yet the fear that she would be forced to live with a catheter bag strapped to her leg for the rest of her life lingered. The night before she was supposed to go home, she told the aide delivering her dinner that she had no interest in ever eating or taking medications again. It took her medical team and me to convince her that the bag would come off in a few days, and that her prognosis for a nearly complete recovery was excellent.
Back at home, my mother’s physical and mental health continued to improve. We started with around-the-clock aide support 7 days a week and gradually decreased it to 8 hours a day. The cost ranged from a low of $3,000 per month to a high of $8,000, with my mom’s long-term care insurance covering $2,800 of the monthly total. Medicare, which paid nearly all of mom’s medical bills, didn’t cover any home support services. Still, between her long-term care insurance, monthly social security check, and personal savings, I projected that she could comfortably live at home for at least three more years before her money ran out and was forced to live in a nursing home under Medicaid.
In the meantime, our biggest concern was figuring out the right amount of aide support for her to safely live at home. Mom occasionally would lose her balance and fall after an aide left for the day. Sometimes it was in the sunroom when she tried to turn off the television without using the remote. Sometimes it was in the kitchen when she tried to reach into the refrigerator to get some food. Sometimes it was beside her bed when she got up in the middle of the night to go to the bathroom.
At times, she would fall and the medical alert pendant would not work. At times, she would fall and then decide not to press the button because she did not want to bother anyone or pay the EMT service $200 for coming to her rescue. At times, she hurt herself and had to go to the hospital for more tests. One time, she required hospitalization and then needed an additional week to convalesce in the Boynton Beach rehabilitation center where my father had passed away under hospice care.
However, despite the setbacks, by November of 2014 my mother had reached the pinnacle of her recovery and she was proud of the accomplishment. Her weekday and weekend aides arrived at 8 am and left at 4 pm. They helped with dressing, bathing, preparing meals, laundry, and driving to medical appointments and shopping. Mom was able to use a walker, unaided, to get around, and her daily medicine regiment consisted of pills for high blood pressure and cholesterol, baby aspirin, a multi-vitamin, and a low dose of medication to keep her emotionally stable.
Otherwise, she was mentally and physically in control, and continued to do all of the therapies whether the therapists showed up or not. Each day she would walk several times around the cul-de-sac in front of her condo, and because of her resiliency, demeanor and work ethic, became a role model to her younger neighbors, therapists and aides on how to grow old gracefully.
However, outward appearances can be deceiving. Independent people like my mother who lose some of that independence often become depressed, and need to be coaxed into socializing again. Mom adamantly refused all of our attempts to get her back to playing cards at the condo community’s clubhouse or going to the local senior center. She preferred to stay home, perform her therapy exercises in private and watch television--the Price is Right, Let’s Make a Deal, Wheel of Fortune, Jeopardy, the local news and the Tennis Channel, which proved to be her true passion.
Still, she never showed any signs of being depressed. I felt it was more a conscious effort on her part to live on two planes. At one level she would enjoy the components that made up each day. At a deeper level, if she could end her life tomorrow, she would do it in an instant. She did not want to suffer the same fate of many of her friends who lost control and were forced to move to a nursing home, an assisted living facility or to one of their children’s homes up North. She did not want to run out of money, go on Medicaid, and end up in a nursing home. And she especially didn’t want to be a burden to my sister and me, and those around her.
Ends that Justify the Means
Just before Christmas 2014, mom discovered blood in her stool. She was diagnosed with uterine cancer soon after, and because she was relatively healthy for her age, was scheduled for a laparoscopic hysterectomy on a Monday in early January. The Thursday before, mom’s weekday aide, who provided support since she had come home from Pinecrest, arrived in the morning and found her lying on the bathroom floor in an uncharacteristically agitated state. Mom had spent the entire night there—she was not wearing her medical alert pendant. The aide called 911 and she was then rushed to the Delray Medical Center. I flew down from Boston the next day and went straight from the airport to see her.
I found my mother in a regular hospital room lying in bed. She looked like someone who was ready to die, though fully alert and mentally with it. The following day she seemed to be getting worse and I figured that the end was near. I sat by her bedside praying that she would pass away, recognizing that against her wishes, I might have to place her in a nursing home. Mom must have been sensing the same thing because when lunch and dinner were served she refused to eat, passing it off to the staff member bringing the food that she just wasn’t hungry.
However, I knew that a hospital with a medical staff dedicated to saving lives was no place to end it in the controlled way that my mother had in mind. I told her it would be best to do it at home. She wouldn’t listen and I was forced to alert the hospital staff. My real hope in doing so was that they would see how far gone she was and admit her to the hospice facility at Pinecrest where she could die under the care of professionals. Instead, a team consisting of a nurse, social worker and administrator interrogated her to see why she no longer wanted to eat. When I left for the day, they told me that the hospital psychiatrist needed to see her before any decisions were made. That night, I drove back to my mom’s condo thinking that she had said all of the right things to prove that she was not depressed, and that she was competent mentally to decide what’s best for her.
When I returned the next morning, I found her in another room being watched by a nurse’s aide. After talking to my mother the night before, the psychiatrist had decided that she was suicidal and evoked the Baker Act, Florida’s Mental Health Act of 1971 which allows the involuntary institutionalization and examination of individuals if they show signs of mental illness, are a danger to themselves or others, or are neglectful.
Fortunately, the psychiatrist planned to return to the hospital in a few hours and wanted to meet with me. He explained in a kindly, sympathetic manner that the medical team would not allow anyone to die on their watch if they could help it. And he then warned me that if my mother did not eat lunch, he would be forced to place her in a psychiatric ward at a rehabilitation center in West Palm Beach. My mom’s weekday aide, who had come to the hospital to visit, and I finally convinced her to eat lunch. The Baker Act was then lifted, and the next day she was transferred to a rehabilitation center in Boca Raton.
It wasn’t the best of experiences: the Center seemed short on staff and my mom’s roommate complained a lot. However, as the week wore on, she snapped back to nearly full strength and was able to go home to continue her recovery. To accommodate her needs, aide coverage was expanded from 8-to-4 to 8-to-8. Mom also agreed to give up some control, which meant going to bed when the aide left for the day, wearing a diaper at night, and not getting out of bed until the aide returned in the morning.
Further, she explicitly told me that she never wanted to go back to the hospital or rehab center, and asked if I could get her some pills—the kind that would facilitate death. I explained that it was illegal and that the only way to do it under Florida state law was to refrain from eating and drinking (Voluntary Stopping Eating and Drinking—VSED).
Essentially, VSED falls under the doctrine of “informed consent” which recognizes the value society places on a person’s autonomy. Forcing someone to eat and drink is considered medical treatment, and under this doctrine, a competent individual can legally refuse any type of medical intervention to protect the integrity of his body. But advancing the dying process through VSED is easier said than done. I had to make sure my mother was mentally competent to make such a decision. I had to convince family members that it was the right thing to do. I had to contend with the Jewish belief that God created human beings and only God could determine when it was time to die.
Further, I had to convince mom’s personal physician to provide a hospice referral so that she would get the proper care at home. The first time I had brought up the subject was nearly one year earlier following mom’s stroke, and her doctor adamantly rejected the idea. At one level, she simply could not understand why a healthy person who outwardly seemed happy and content would want to end it prematurely. At another level, she, like most of the medical community, was in the business of saving lives, not ending them.
Day by Day
I returned to Boston with the unsettling fear that mom would not wait very long to start. It took her less than a week, and when I returned to Florida I had two important allies to smooth the way: mom’s personal physician, who agreed to give her a hospice referral, and Compassion and Choices, a non-profit organization focused on improving care and expanding choice at the end of life.
I had initially contacted the organization after mom’s stay at Pinecrest when she explicitly told me that she wanted to end it if she could not live at home. The organization offered a free service to help me understand end of life options in Florida, and navigate the healthcare system. They also assigned me a counselor who would provide day-to-day emotional support, and guidance on pain and symptom control. And if everything went according to the Compassion and Choices brochure, mom would slip into a coma between the 3rd and 5th day, and pass away between the 10th and 12th. At worst, it would take no longer than 21 days.
However, no matter how much you prepare for an event like this, you are still traveling into the unknown where anything can happen.
Here were just some of the twists and turns that kept my sister and me on edge:
At 7 am, despite lying in what appeared to be a semi-conscious state with her eyes half open, mom’s condition seemed to have improved. Her breathing was stronger and she looked like she would awake at any moment. Concerned that she might, I went outside to text a friend familiar with the VSED process. However, we didn’t need it. Mom passed away a few minutes later.
By noon, a representative from hospice came to make the official pronouncement. An hour later, two attendants from the funeral home came to remove her body. Mom’s funeral was held a few days after that. It was a graveside service performed by a rabbi, who coincidentally had grown up in our hometown on Long Island. Along with my sister and me, two neighbors and her long-time weekday aide attended. As mom wished, she was laid to rest beside my father.
My thoughts a few weeks after going through VSED:
By Richard Abrahams, May 2015
My mother died peacefully at the age of 93. For 92 of those years she lived a remarkably illness-free, independent life, always maintaining that if she couldn’t live the way she wanted—at her condo and in control—then she would find a way to end her life on her own terms.
As her son, health proxy and power of attorney, I didn’t really think much about it until my sister and I had trouble reaching her on a Friday night in February of 2014. I lived in Boston and my sister lived on Long Island, so we typically called around 6 pm a few times a week to see if she was all right. On this particular Friday, my mom did not answer the phone. It wasn’t unusual and we both figured that she was out playing cards or had gone to the movies with a friend. On Saturday, we called again and there was still no answer. Again, my sister and I thought she was out and figured that nothing was wrong.
Part of that thinking was influenced by the safeguards we had in place since my father passed away four years earlier. In an emergency, all mom had to do was press the medical alert button on a pendant that she wore around her neck to be instantly connected to a response center. Her neighbors also knew to check on her at the end of a day if the daily newspaper that was delivered every morning was still lying outside her front door.
On Sunday afternoon, my sister and I called again. There still wasn’t any answer, so my sister called a neighbor who alerted the county sheriff. Fifteen minutes later, mom was found lying on the bedroom floor with a bed sheet wrapped around her. The medical alert pendant had landed in such a way that she couldn’t push the button. She was also very weak and dehydrated, but surprisingly lucid and conversational.
I flew down to Florida from Boston the following day. Mom was now in an intensive care unit (ICU) in the Delray Medical Center. Her nurse explained that she had suffered a mild stroke, and with time, would probably recover. After several days in the ICU, she was moved to a regular room, and then to Pinecrest, the rehabilitation center connected to the hospital.
Soon after, my mother started a daily routine of therapies: speech, physical and occupational. She had to use a walker with aide support to move around. She had difficulty pronouncing and remembering words. She was barely able to pick up a pen to write her name. She had a catheter bag strapped to her leg because she had lost her ability to urinate on her own.
During her three week stay, my mother outwardly never wavered in her commitment to regain control of her life, earning the admiration and respect of the medical team for her calm demeanor and work ethic. Yet the fear that she would be forced to live with a catheter bag strapped to her leg for the rest of her life lingered. The night before she was supposed to go home, she told the aide delivering her dinner that she had no interest in ever eating or taking medications again. It took her medical team and me to convince her that the bag would come off in a few days, and that her prognosis for a nearly complete recovery was excellent.
Back at home, my mother’s physical and mental health continued to improve. We started with around-the-clock aide support 7 days a week and gradually decreased it to 8 hours a day. The cost ranged from a low of $3,000 per month to a high of $8,000, with my mom’s long-term care insurance covering $2,800 of the monthly total. Medicare, which paid nearly all of mom’s medical bills, didn’t cover any home support services. Still, between her long-term care insurance, monthly social security check, and personal savings, I projected that she could comfortably live at home for at least three more years before her money ran out and was forced to live in a nursing home under Medicaid.
In the meantime, our biggest concern was figuring out the right amount of aide support for her to safely live at home. Mom occasionally would lose her balance and fall after an aide left for the day. Sometimes it was in the sunroom when she tried to turn off the television without using the remote. Sometimes it was in the kitchen when she tried to reach into the refrigerator to get some food. Sometimes it was beside her bed when she got up in the middle of the night to go to the bathroom.
At times, she would fall and the medical alert pendant would not work. At times, she would fall and then decide not to press the button because she did not want to bother anyone or pay the EMT service $200 for coming to her rescue. At times, she hurt herself and had to go to the hospital for more tests. One time, she required hospitalization and then needed an additional week to convalesce in the Boynton Beach rehabilitation center where my father had passed away under hospice care.
However, despite the setbacks, by November of 2014 my mother had reached the pinnacle of her recovery and she was proud of the accomplishment. Her weekday and weekend aides arrived at 8 am and left at 4 pm. They helped with dressing, bathing, preparing meals, laundry, and driving to medical appointments and shopping. Mom was able to use a walker, unaided, to get around, and her daily medicine regiment consisted of pills for high blood pressure and cholesterol, baby aspirin, a multi-vitamin, and a low dose of medication to keep her emotionally stable.
Otherwise, she was mentally and physically in control, and continued to do all of the therapies whether the therapists showed up or not. Each day she would walk several times around the cul-de-sac in front of her condo, and because of her resiliency, demeanor and work ethic, became a role model to her younger neighbors, therapists and aides on how to grow old gracefully.
However, outward appearances can be deceiving. Independent people like my mother who lose some of that independence often become depressed, and need to be coaxed into socializing again. Mom adamantly refused all of our attempts to get her back to playing cards at the condo community’s clubhouse or going to the local senior center. She preferred to stay home, perform her therapy exercises in private and watch television--the Price is Right, Let’s Make a Deal, Wheel of Fortune, Jeopardy, the local news and the Tennis Channel, which proved to be her true passion.
Still, she never showed any signs of being depressed. I felt it was more a conscious effort on her part to live on two planes. At one level she would enjoy the components that made up each day. At a deeper level, if she could end her life tomorrow, she would do it in an instant. She did not want to suffer the same fate of many of her friends who lost control and were forced to move to a nursing home, an assisted living facility or to one of their children’s homes up North. She did not want to run out of money, go on Medicaid, and end up in a nursing home. And she especially didn’t want to be a burden to my sister and me, and those around her.
Ends that Justify the Means
Just before Christmas 2014, mom discovered blood in her stool. She was diagnosed with uterine cancer soon after, and because she was relatively healthy for her age, was scheduled for a laparoscopic hysterectomy on a Monday in early January. The Thursday before, mom’s weekday aide, who provided support since she had come home from Pinecrest, arrived in the morning and found her lying on the bathroom floor in an uncharacteristically agitated state. Mom had spent the entire night there—she was not wearing her medical alert pendant. The aide called 911 and she was then rushed to the Delray Medical Center. I flew down from Boston the next day and went straight from the airport to see her.
I found my mother in a regular hospital room lying in bed. She looked like someone who was ready to die, though fully alert and mentally with it. The following day she seemed to be getting worse and I figured that the end was near. I sat by her bedside praying that she would pass away, recognizing that against her wishes, I might have to place her in a nursing home. Mom must have been sensing the same thing because when lunch and dinner were served she refused to eat, passing it off to the staff member bringing the food that she just wasn’t hungry.
However, I knew that a hospital with a medical staff dedicated to saving lives was no place to end it in the controlled way that my mother had in mind. I told her it would be best to do it at home. She wouldn’t listen and I was forced to alert the hospital staff. My real hope in doing so was that they would see how far gone she was and admit her to the hospice facility at Pinecrest where she could die under the care of professionals. Instead, a team consisting of a nurse, social worker and administrator interrogated her to see why she no longer wanted to eat. When I left for the day, they told me that the hospital psychiatrist needed to see her before any decisions were made. That night, I drove back to my mom’s condo thinking that she had said all of the right things to prove that she was not depressed, and that she was competent mentally to decide what’s best for her.
When I returned the next morning, I found her in another room being watched by a nurse’s aide. After talking to my mother the night before, the psychiatrist had decided that she was suicidal and evoked the Baker Act, Florida’s Mental Health Act of 1971 which allows the involuntary institutionalization and examination of individuals if they show signs of mental illness, are a danger to themselves or others, or are neglectful.
Fortunately, the psychiatrist planned to return to the hospital in a few hours and wanted to meet with me. He explained in a kindly, sympathetic manner that the medical team would not allow anyone to die on their watch if they could help it. And he then warned me that if my mother did not eat lunch, he would be forced to place her in a psychiatric ward at a rehabilitation center in West Palm Beach. My mom’s weekday aide, who had come to the hospital to visit, and I finally convinced her to eat lunch. The Baker Act was then lifted, and the next day she was transferred to a rehabilitation center in Boca Raton.
It wasn’t the best of experiences: the Center seemed short on staff and my mom’s roommate complained a lot. However, as the week wore on, she snapped back to nearly full strength and was able to go home to continue her recovery. To accommodate her needs, aide coverage was expanded from 8-to-4 to 8-to-8. Mom also agreed to give up some control, which meant going to bed when the aide left for the day, wearing a diaper at night, and not getting out of bed until the aide returned in the morning.
Further, she explicitly told me that she never wanted to go back to the hospital or rehab center, and asked if I could get her some pills—the kind that would facilitate death. I explained that it was illegal and that the only way to do it under Florida state law was to refrain from eating and drinking (Voluntary Stopping Eating and Drinking—VSED).
Essentially, VSED falls under the doctrine of “informed consent” which recognizes the value society places on a person’s autonomy. Forcing someone to eat and drink is considered medical treatment, and under this doctrine, a competent individual can legally refuse any type of medical intervention to protect the integrity of his body. But advancing the dying process through VSED is easier said than done. I had to make sure my mother was mentally competent to make such a decision. I had to convince family members that it was the right thing to do. I had to contend with the Jewish belief that God created human beings and only God could determine when it was time to die.
Further, I had to convince mom’s personal physician to provide a hospice referral so that she would get the proper care at home. The first time I had brought up the subject was nearly one year earlier following mom’s stroke, and her doctor adamantly rejected the idea. At one level, she simply could not understand why a healthy person who outwardly seemed happy and content would want to end it prematurely. At another level, she, like most of the medical community, was in the business of saving lives, not ending them.
Day by Day
I returned to Boston with the unsettling fear that mom would not wait very long to start. It took her less than a week, and when I returned to Florida I had two important allies to smooth the way: mom’s personal physician, who agreed to give her a hospice referral, and Compassion and Choices, a non-profit organization focused on improving care and expanding choice at the end of life.
I had initially contacted the organization after mom’s stay at Pinecrest when she explicitly told me that she wanted to end it if she could not live at home. The organization offered a free service to help me understand end of life options in Florida, and navigate the healthcare system. They also assigned me a counselor who would provide day-to-day emotional support, and guidance on pain and symptom control. And if everything went according to the Compassion and Choices brochure, mom would slip into a coma between the 3rd and 5th day, and pass away between the 10th and 12th. At worst, it would take no longer than 21 days.
However, no matter how much you prepare for an event like this, you are still traveling into the unknown where anything can happen.
Here were just some of the twists and turns that kept my sister and me on edge:
- Mom’s long-time weekday aide quit after finding out what she was planning and we had to find a replacement willing to work in a hospice setting.
- During his first and only visit, the hospice physician urged mom to eat, thinking that she had stopped because of the uterine cancer. He also said it would take a week or two longer than we expected.
- After seeing a television commercial for coffee, mom asked if we could get her a cup. It begged the question of what we would do if she really meant it.
- When mom could no longer use her walker to get around, we solved the problem by turning the walker into a wheelchair because it had a seat and wheels.
- Administering medication was more complicated than expected. When mom became restless, we had to give her a drug called Ativan every four hours. The operation involved taking a pill from a “Care Kit” left by the hospice nurse which contained an arsenal of drugs to defend against nearly any medical crisis, turning the pill into powder by striking it with a hammer, placing the powder in a spoon, adding water, and placing the mixture under mom’s tongue. At one point mom refused to take it. She kept her mouth clenched and growled like a dog until we could figure out what to say to convince her that it was worthwhile.
- Interpreting mom’s requests proved to be difficult and testing, especially toward the end when she wasn’t completely lucid and articulate. One time, she asked for water and we thought she wanted us to spray her mouth with an oral hygiene product that we used to counter dry mouth, but what she really wanted was the wet cloth that we had been placing on her forehead to make her feel better.
At 7 am, despite lying in what appeared to be a semi-conscious state with her eyes half open, mom’s condition seemed to have improved. Her breathing was stronger and she looked like she would awake at any moment. Concerned that she might, I went outside to text a friend familiar with the VSED process. However, we didn’t need it. Mom passed away a few minutes later.
By noon, a representative from hospice came to make the official pronouncement. An hour later, two attendants from the funeral home came to remove her body. Mom’s funeral was held a few days after that. It was a graveside service performed by a rabbi, who coincidentally had grown up in our hometown on Long Island. Along with my sister and me, two neighbors and her long-time weekday aide attended. As mom wished, she was laid to rest beside my father.
My thoughts a few weeks after going through VSED:
- I was glad that mom had communicated her end of life wishes long before any critical decisions had to be made.
- I felt that anyone who could go 22 days without eating and drinking had to be truly committed to ending their life.
- I was relieved that mom didn’t experience any pain or suffering.
- I realized that VSED was not for everybody, and there was no way of knowing how long it might take and how an individual would respond.
- With rising healthcare costs, Medicare should cover aide support at home.
- “Aid-in-dying” laws should to be expanded to make it easier for mentally competent individuals like my mother to end their life with dignity.
- The experience helped me better understand human mortality, and brought me closer to my mother and sister. In the end, I felt no remorse. While saddened by mom’s passing, I was proud to have helped her achieve her goal.
- Watching mom age so gracefully reaffirmed my belief that good health, an active lifestyle and a young attitude have more to do with a person’s age that their date of birth.
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