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I have a terminal illness and am fighting my health insurance company to let me die on my own terms

By on October 21, 2022 0

Shava Nerad told Insider that her son, Joseph, will take care of his dog, Wilson, after she took her own life.Courtesy of Shava Nerad

  • Shava Nerad has a terminal illness and intends to end his life by refusing food and water.

  • Her health insurance company has refused the services she needs to carry out her plans.

  • This is the story of Nerad, told to Jane Ridley.

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

Once I dissuaded a good friend from committing suicide.

We were both in our twenties and I asked, “If you could do anything in your life, what would you do?” He said he would be a roadie and learn to do lighting for bands. So I said to him, “Quit your job, get rid of everything and go try this.” Then I said, “You can always kill yourself later.”

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

Now, four decades after that conversation, and at 63, it’s me 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 they gave me millions of dollars, it wouldn’t make me healthy. If you can’t do what you love and you’re in pain all day and every day, maybe it’s time to move on.

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

But it’s not as simple as that. I’m not going to hang myself, it looks 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.

I believe this is the most compassionate method of suicide – both for you and your family. It’s not painful – you won’t even be aware of it towards the end – and your loved ones can be at your bedside if they wish. But before I go ahead with VSED, I need to tear through the bureaucracy and change my advance directive. My health insurance won’t pay for the geriatric psychiatric evaluation I need to prove I’m “sane.” If I don’t get permission, I may forget to receive any form of palliative care.

Shava Nerad poses with his hand under his chin.  She wears a black flat cap.

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

My chronic condition dates back to 2007. I hit my head in a car accident, but did not receive proper medical attention. My symptoms included headaches, confusion, focal seizures and aphasia. I had a series of endocrine issues including loss of my libido.

I have seen many doctors over the years – ranging from an orthopedic surgeon to a memory expert – who have treated my symptoms. But no one could find the underlying cause. Then, in 2013, I met a doctor who gave me a lot of “home”. He reviewed my medical history and the shape I was in before sending me for imaging and other tests.

I have suffered horribly for more than 15 years

They discovered that I was missing half of my hypothalamus. It’s an area of ​​the brain that releases hormones to control functions like your sleep, appetite, and sex drive. The neurologist said it looked like I had a clot in my collarbone that traveled 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 inflammation and narrowing of blood vessels. My rheumatologist—who told me it was a progressive disease that could cause organ damage—told me it was life-threatening. She said Behcet had aggravated a stroke.

I had violent headaches and excruciating pain in my joints. It was as if the inside of my body was covered in hives. I was forced to quit my job as the director of a non-profit software project. I used a walker because of my limited mobility.

I think my pain threshold is impacted by barometric pressure. I felt my best for years on a trip to South Africa in 2019. My symptoms seemed to ease in the hot, dry weather. I moved from Boston to Fremont, California the same year. The location change helped – for a while. But if a doctor asked me how I felt today, I would say “really, really, really terrible”.

Behcet tends to exacerbate any old or new injury. Right now 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 tried vitamin D and herbal supplements. Nothing did a very good job. CBD dulls the pain — or makes me ignore the pain better.

I had COVID in January of this year. I had even more pain and fatigue. One lasting effect has been double vision, so I can’t drive anymore. Eyestrain restricted my reading and writing. I am a retired journalist, so this is particularly distressing. I sleep 18 hours a day. I only leave home for medical appointments.

I don’t wanna die a long, torturous death like my mother did

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

My mother died a prolonged and painful death from Lewy body dementia – the same thing Robin Williams had – at the age of 94. She started thinking about death.

The only legal option I have is VSED. The Supreme Court has ruled that everyone has the right to refuse treatment, including refusing food and hydration. The moment I stop eating and drinking, I can’t get medicine to help me die, only medicine to make me less distressed.

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

Nerad said his symptoms eased a bit while on vacation in 2019 in the dry climate of South Africa.Courtesy of Shava Nerad

I contacted a number of advocacy groups for VSED. They told me to change my advance directive once I was certified as sane – without depression or dementia – by an experienced geriatric psychiatrist.

I don’t need the certification to advance with VSED, but it’s an important step. The lawyers said my decision would be much less likely to be challenged if I got the legal documentation. The wishes of some VSED patients, they said, were not honored.

But Kaiser Permanente, my HMO, refused to pay for the psychological evaluation. I said I needed to be referred to pursue VSED and receive palliative care. They were not transparent about their refusal.

If I have to pay out of pocket, it will cost tens of thousands of dollars that I don’t have. I am a senior on a fixed income.

I feel it’s time for me to leave

It takes a lot of strength to talk about options like VSED. We encounter many social taboos. It’s an incredible quality product of modern medicine – it’s hard for people to die. We’re so focused on prolonging life that we don’t talk about quality of life.

I prefer to die at home with palliative care rather than in an institution. People I haven’t seen in years came to visit me. They are happy to have the opportunity to say goodbye, which should be the case. I have a dark sense of humor and say we should light a few candles on my “unbirthday cake”.

I led a good life and I did a lot of things. I think back to Joseph’s birth and the first hours I held him. When I was to marry her father, I made my own wedding dress. I loved dancing and climbing the mountains where I grew up in Vermont.

I want my death to be as smooth as possible, for everyone involved. I want to be as brave and determined and loving in death as I have been in life.

Insider asked Kaiser Permanente to comment on Nerad’s case. A spokesperson said they could not comment on individual cases under HIPAA guidelines.

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