Respect for the life and death decisions of others

Very near the beginning of the 16-minute film about Rosemary Bowen’s decision to voluntarily stop eating and drinking (VSED), the conflict between ideas about when it is time for someone to die became apparent.  At age 94, Bowen decided that she was ready to die.  She had no terminal illness, but she had a very long lifetime of experience seeing friends living out their last miserable days in nursing homes, wracked with pain and infirmities.  She wanted, she said, to leave life on her own terms, with joy and the satisfaction of a life well-lived.

Two other factors influenced her decision.  She did not want to be a burden to her family, though her family welcomed her being a burden.  And she did not want to experience a long decline in her health.  She saw her then-current health problem–a spinal compression fracture related to osteoporosis–as foreshadowing more decline to come.

Against the wishes of virtually everyone in her family, she decided that she would voluntarily stop eating and drinking.  For forty years she had declared to family members that she did not want to go through a slow decline, being cared for.  If she couldn’t care for herself, she did not want to continue to live.  She told objectors, “I’m sorry, but I have to do what’s right for me.”

She had led an active life swimming, walking, cooking and cleaning for herself, enjoying a book club and the events at a poetry cafe until a few months before she began her fast.  The surgery for the spinal compression fracture led directly to her decision that it was time to take control of her own death.  She seemed joyous about her decision, saying her goodbyes to friends and family both before and during her time without food and fluids.

With the help of a staff member at Iona Senior Services, located in the District of Columbia, Bowen was accepted as a patient by an area hospice, which is often easier to qualify for if VSED has begun at the time of application.  If a person is not dying from some disease or medical condition, it takes a strong will to stop eating and drinking.  Rosemary certainly appeared to have that strong will.

In the film, Bowen is delighted with her decision and converses with friends on the telephone, continuing to say her goodbyes.  She discusses her circumstances with Mary Beth, the daughter who did the filming at Bowen’s request.

Bowen said that loss of independence is “not for me.”  This decision may seem foreign to most people; anathema to many who live with caregivers for years or decades, or their entire lives.  Consider Stephen Hawking, the theoretical physicist, cosmologist, and author, who at age 21 was diagnosed with the motor neuron disease ALS, and lived with the disease for over fifty years as it progressed.  He grew increasingly dependent on sophisticated electronics and equipment to help him communicate, and had round-the-clock personal care for most of his life.  For the last twenty-five years before his death in 2018, he was an advocate for the disabled whose life demonstrated that with appropriate assistance even the most severely disabled can lead productive and satisfying lives.

Hawking’s decisions about living were in stark contrast with Bowen’s choices.  At the time of her death in 2018, she was recovering well from spine surgery and was expected to make a full recovery.  But, like Hawking, she insisted that her life was her own, and she made decisions for herself on that basis.  They may not have been the decisions you or I would make, but they reflected her choices for herself.

The film provides abundant evidence that Bowen had a sharp mind and a strong will.  From hospice and family members, she received the care she required, which consisted of excellent oral care and can include analgesics for any discomfort and medication to handle delirium, if needed.

Bowen recognized that others may not make the same choice she made if faced with the same circumstances.  In fact, she preferred having another choice–the ability to take a lethal substance to quickly end her life–but that was not an option for her because she did not have a terminal condition and she did not live in a state with a right-to-die law–she lived in Maryland.  

By day four of her refusal to eat or drink, she wished the process would be quicker.  She was impatient to die.  Yet, she said,

I feel so privileged to be exiting life like this, and think of all those people who are wringing their hands and saying ‘If only God would take me,’ and all they need to do is give God a little help by holding back on eating and drinking.

In spite of her frustration with how long it was taking, Bowen was positive about her decision:

I am leaving life with great joy. I cannot tell you how content I am and I recommend it highly to do it this way. Be in control. Don’t let people decide anything about you and keep you doing a lot of procedures that are not going to benefit your health at all. Just get on with it and go.

For those who do not feel the way Bowen did, she understood.  She believed strongly that this was a decision for everyone to make for themselves.  She recognized that living without independence was not for her, but acknowledged that it might be a choice for others.

Disability activists might condemn her views about losing independence as ableist, and perhaps ageist, as well.  I had an aunt who lived to age 104 and spent her last five years in a nursing home.  Unlike many who do so, she had her full mental faculties until very near to her death.  Her problem was mobility.  She was as strong-willed as Bowen and made sure the nursing home staff did their jobs well, not only for her, but for everyone.  She seemed to be literally hell on wheels around that institution, as she maneuvered her wheelchair wherever she wanted and barked complaints and orders when she saw the need to do so.  She was the best disability advocate I can imagine.  Unlike Bowen, she chose to live with disability, a choice that illustrates the principle that personal autonomy resides with the individual, not with others who might disagree with another’s choice.

I would find it the height of hypocrisy for anyone to demand that all others make the same choice as mine.  Bowen’s choice may not be mine, but hers is the only choice that should have mattered when it came to her life.  Labeling people with whom we disagree about their life and death choices or using pejorative language about them accomplishes nothing but alienation; it does nothing to further the understanding and perspective we should all have when it comes to end-of-life decisions.