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Essay: "Living in dying," a journey in finding health in incurable illness

This essay by an Australian woman with ALS describes how accepting, even embracing, illness can support health even in the face of dying.

Photo of Ken Rosenfeld
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Faced with Motor Neuron Disease (MND, also called ALS or Lou Gehrig's disease), an ultimately-fatal illness with an average life expectancy of just over 2 years, Hannah Rachel Bell addressed her desire for her "leaving to be as healthy as my living."  In this New Philopher essay ( ) Bell shares the prism through which she finds acceptance, even enlightenment, in her illness.  Her brilliant essay brings important insights into the discussion of how we might live our own lives, and deaths, so that we might more fully embrace them.

Notable quotes from the essay:

"A major driver of this healing urge in others – the professional medical industry and alternative therapeutic practices – is to prolong living regardless of the natural cycle of birth, life and death, and regardless of an individual’s acceptance of their experience of the process."

"Hope is irrelevant. I see hope and fear as two sides of a coin, and I have neither."

"From Christians to Buddhists, and through the lives of people on death row to saints, there is an internal process of acceptance that at some stage walks with the drive to stay alive. This actually enhances the journey of leaving. Hope never dominates because fear dissolves. The drive to heal doesn’t consume daily life as a desperate struggle to live. Seizing the day on the journey to death can be much more challenging and exciting."

"This acceptance of impending and foreseeable departure confronts us with our own cultural values and attitudes: our fears around death and dying, our hopes, our anticipation and/or avoidance of grief and loss, and our capacity to respectfully share the journey of the departing."

What is a provocation or insight that might inspire others during this challenge?

As I soaked up Ms Bell's writing, I pondered the following:

-- How might we balance hope (and its necessary counterpart, fear) with )embracing (and celebrating) "what is" when facing of advanced illness?

-- How might our society, including our health care delivery systems, support individuals who are "winding down" toward death, without having to hide behind the hope/fear dialectic?

Tell us about your work experience:

I've been a palliative care physician for the past 20 years, with particular interest in care models that honor the goals and values of people facing serious illness and their families.


Join the conversation:

Photo of Shane

Thanks for sharing this powerful essay Ken! The quote from Rachel, "This actually enhances the journey of leaving. Hope never dominates because fear dissolves," really resonated with me. We've noticed that our community has been sharing stories expressing a conflict between their drive to stay alive and their acceptance of letting go — but perhaps we don't have to choose. You said it perfectly by describing the end-of-life experience as a fine balance between embracing and celebrating. As we move into the next phase we'll look forward to seeing ideas that will explore the tension within hope& fear, drive&acceptance:) 

Photo of Ken

Yes, her framing of the question was brilliant.  It'll be interested in how this feeds into the design process

Photo of Pam

Hi Ken -- Thanks for sharing this essay. I am looking forward to having my students in the Palliative Care class I teach at Tufts University School of Medicine's Pain Research Education and Policy program add their contributions to your ideas in this challenge. Look forward to collaborating! 

Photo of Ken

Thanks, Pam.  I found the essay compelling -- it would be an interesting exercise to brainstorm about how a health care system might move past a hope/fear dialectic.  (I'm not optimistic...).  It'd also be great to have your trainees contribute to developing some of the Ideas phase contributions.  I've found several of them to be worth taking a deeper dive!

Photo of Pam

We are going to taking a deep dive into this topic over the next several weeks. I have a group of 6 graduate students, 2 physicians, 3 students matriculating in a dual degree program in acupuncture and pain research, education and policy and one MPH health policy might we help in the idea phase with areas that you proposed in the challenge? We will be meeting in an intensive weekend session beginning tonight �� Looking forward to sharing ideas! 

Photo of Ken

Pam, I'd love to work with your trainees.  Why don't you give me a call sometime today to discuss,, my cell is  310-991-1906.


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