Woman Is Fighting Her Insurance so She Can Die on Her Own Terms

  • Shava Nerad has a terminal illness and intends to end her life by refusing food and water.
  • Her health insurance has denied her the services she needs to carry out her plans.
  • This is Nerad’s story as told to Jane Ridley.

This essay is based on a conversation with Shava Nerad. It has been edited for length and clarity

I once talked a good friend out of suicide.

We were both in our 20s and I asked, “If you could do anything with your life, what would you do?” He said he would become a roadie and learn to light for bands. So I told him, “Quit your job, throw everything away and try this.” Then I said, “You can always kill yourself later.”

He took my advice. He became a lighting director for some of the biggest musicians of the 1980s and 1990s.

Now, three decades after that conversation, I’m the one who wants to end my life. I’m not pro-suicide, but I’m against the idea of ​​a meaningless life – something I see in my future. If millions of dollars were handed to me, it would not give me my health back. If you can’t do what you love and you’re in pain all day and every day, maybe it’s time to leave.

I need my health insurance clearance before I can end my life properly

But it is not that easy. I’m not going to hang myself – it sounds awful. All I want is to go out on my own terms while I can still say goodbye. The best way for me to die is to voluntarily stop eating and drinking, or VSED.

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I believe it is the most compassionate method of suicide – for both yourself and your family. It’s not painful – you’re barely aware of it towards the end – and your loved ones can be by your bedside if they wish. But before I proceed with VSED, I need to tear through the bureaucracy and amend my living will. My health insurance does not pay for the geriatric psychological assessment that I need to prove that I am “healthy”. If I don’t get clearance, I can forget about any kind of hospice care.

Shava Nerad poses with her hand under her chin.  She is wearing a black flat cap.

Nerad at the age of 45. She is a retired journalist.

Steve Garfield

My chronic health condition dates back to 2007. I hit my head in a car accident but didn’t get proper medical attention. My symptoms included headaches, confusion, partial seizures, and aphasia. I’ve had a number of endocrine issues including a loss of my libido.

I have seen many doctors over the years – from orthopedists to memory specialists – who have treated my symptoms. But no one could get to the root cause. Then, in 2013, I met a doctor who gave me a “full house.” He looked at my medical history and condition before sending me for imaging and other tests.

I have been in excruciating pain for more than 15 years

They found that I was missing half of my hypothalamus. It’s an area of ​​the brain that releases hormones to control functions like sleep, appetite, and sex drive. The neurologist said that it appeared I had experienced a clot in my collarbone that had migrated to my brain and calcified. He thought my stroke was the result of the car accident.

Three months later I was diagnosed with Behcet’s Syndrome. It is an autoimmune disease that causes blood vessels to become inflamed and narrowed. My rheumatologist – who told me it was a progressive disease that could cause organ damage – said it was potentially fatal. She said Behcet aggravated a stroke.

I had a raging headache and excruciating pain in my joints. It felt like the inside of my body was covered with hives. I was forced to quit my job as the director of a non-profit software project. I used a walker because of my mobility problems.

I think my pain threshold is affected by biometric pressure. On a trip to South Africa in 2019, I felt better than I had in years. My symptoms seemed to lessen in warm, dry weather. That same year I moved from Boston to Fremont, California. The change of location helped – for a while. But if a doctor asked me how I feel today, I’d say, “Really, really, really awful.”

Behcet tends to aggravate any injury, old or new. At the moment the inflammation is in my left hip. I will feel it in my shoulder, my back, my internal organs and even my feet. I take medication for diabetes and thyroid problems. I’ve tried vitamin D and herbal supplements. Nothing really did a good job. CBD eases the pain—or allows me to better ignore the pain.

I got COVID in January this year. I was in even more pain and fatigue. A lasting effect was double vision, so I can no longer drive a car. Eye strain has limited my reading and writing. I’m a retired journalist, so this is particularly worrying. I sleep 18 hours a day. I only leave my house for doctor appointments.

I don’t want to die a long, agonizing death like my mother

Last month I decided to end my life. My 29-year-old son Joseph supports me. He knows that I have been ill for 15 years and that I am not well. I knew that I was not eligible for any of the laws of dying with dignity. It was highly unlikely that a doctor would say I had six months to live. Behcet is a slowly progressive disease. It could kill me by January next year – or when I’m in my 90s.

My mother died a long and agonizing death from Lewy body dementia – the same as Robin Williams had – at the age of 94. She became squeamish when she thought about death.

The only legal option I have available is VSED. The Supreme Court ruled that every person has the right to refuse treatment, including withholding hydration and nutrition. At the point where I stop eating and drinking I am not on medication to help me die, only medication to make me less desperate.

Shava Nerad plays with a lion cub while on holiday in South Africa

Nerad said her symptoms improved somewhat during her 2019 holiday in South Africa’s dry climate.

Courtesy of Shava Nerad

I have contacted a number of stakeholders for VSED. They have told me to change my living will once I have been certified by a senior geriatric psychiatrist to be “of sound mind” – with no depression or dementia.

I don’t need certification to progress with VSED, but it’s an important measure. The attorneys said that if I got the legal paperwork, my decision would be much less likely to be challenged. The wishes of some VSED patients were not taken into account.

But Kaiser Permanente, my HMO, refused to pay for the psychiatric evaluation. I said I need the referral to pursue VSED and receive hospice care. They have not made their refusal transparent.

If I have to pay out of my own pocket, it costs tens of thousands of dollars that I don’t have. I am a senior with a fixed income.

I feel it’s time for me to go

It takes a lot of power to talk about options like VSED. We encounter many social taboos. It’s a product of how incredibly good modern medicine is – it’s hard for people to die. We’re so focused on extending life that we don’t talk about the quality of life.

I would rather die at home in a hospice than in a facility. People I haven’t seen in years have come to visit. They’re happy to have the opportunity to say goodbye, and that’s the way it should be. I have a dark sense of humor and say we should light some candles on my unbirthday cake.

I’ve lived a good life and packed a lot. I look back on Joseph’s birth and the first few hours I held him. When I was to marry his father, I made my own wedding dress. I loved dancing and rock climbing in the mountains where I grew up in Vermont.

I want my death to be as gentle as possible for everyone involved. I want to be as brave and determined and loving in death as I was in life.

Insiders reached out to Kaiser Permanente for comment on Nerad’s case. A spokesman said that under HIPAA guidelines, they cannot comment on individual cases.

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