October 2nd, 2012

My mom died almost three decades ago. She’d made it super clear to my sibs and I that her wish was to live at all costs. The thing is, none of us realized what those (human) ‘costs’ would be. And we’d never thought to explore what ‘quality’ meant to her life. A bit about my mom: She was a constant learner. Nothing made her happier than being immersed in a new subject. After my father died suddenly of a heart attack, she became associate producer for my documentary-producer brother. Their topics ranged from women with breast cancer (my mom was a survivor) to rapists and murderers. By the light of her eyes, and her proud demonstration of new jargon, you could practically see my mother’ s brain expanding. At age 65, mysterious ailments began to plague her body (she’d often lament: it ‘s such a shame that my body is deteriorating while my brain is becoming more honed)

The ailments were eventually linked to the real problem: a brain tumor. Suddenly, an inability to say the right words to make herself understood was put into a new and horrific light. Options were surgery and – if unsuccessful – radiation. [...] continue the story

In 2005 Tony Nicklinson had a catastrophic stroke, which has left him utterly paralysed. He has what is known as ‘locked in syndrome’ and cannot move, talk, feed himself or perform even the most basic function without help. He can only communicate via a computer controlled by his eyes.

In this two part series Tony speak with BBC News about wanting to end his life.

By Jo Collinge

This blog is dedicated to the memory of my huband’s nephew, Christopher, taken from this life at the age of only 32.

When I first met the late great Susie Sharman she was wearing a t-shirt which had emblazoned across it “Life is Not a Dress Rehearsal”. How right she was – Susie had more than her fair share of trials and tribulations over the following 20 years of our friendship, but she always lived every day as if it were her last, until her last day came when she slipped peacefully away.

I’m certainly guilty myself of “getting it wrong” over the years – but its from our mistakes that we learn and hopefully move on……Its not doing anything about those mistakes where problems can manifest and at times fester. Tim, having “divorced” himself from his immediate family, had not seen or spoken to his sister, Tanya, or his niece or nephews for five years. At the time, I decided not to get involved but did say to my sister-in-law to keep in touch if she ever needed anything. Since then, we haven’t spoken as such, but more texted each other every now and then, including when I was [...] continue the story

By: Kathy Kastner March 30, 2012 The Society of Participatory Medicine supports “a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.” This concept seems especially essential for anyone whose quality of life is constantly adversely affected by a health condition: get in the driver’s seat.

Be that as it may, being a participatory patient is not for the faint of heart. As a member of the Society, I decided to articulate my own philosophy:

My 8 Point Philosophy of Participatory Medicine

1. I want to learn about my health issue(s).

* I feel I have sufficient skills and capabilities to be participatory. * I understand that, along with the learning and empowerment process, come stresses, disappointments, irritation, frustration, and exhaustion.

2. When I don’t understand something, I ask for an explanation.

* In the doctor’s office, I seek strategies to improve meaningful communication, and ask that jargon be written down so I can do my own research. * Before a doctor’s appointment, if I’m fearful, I research my symptoms and conditions to the best of my abilities, and bring my questions with me.

3. I’ve learned to do my own research, using [...] continue the story

Life Before Death Wednesday 9 April 2008 – Sunday 18 May 2008

Nothing teaches us more about life than death itself. Journalist Beate Lakotta and photographer Walter Schels asked 24 terminally ill people if they could accompany them during their last weeks and days. From these vigils came a series of insightful descriptions and photographic portraits taken before and after death.

Far from being gloomy, these intimate concerns of the dying reveal the preciousness and transience of life, and make us question what we often take for granted.

They discuss their experiences of meeting and photographing terminally ill patients, and what this taught them about life and dying.