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Of course, for some people, quantity of life is the goal, regardless - for religious or other reasons.

But the quality of life meter is a fascinating concept - and it raises other questions, such as: Who defines quality of life?

I've seen some Alz patients, including my father, who reach a state of contentment. The quality-of-life meter might detect that they are living in the moment, enjoying food and music and touch, not worried about the future or regretting the past - and pretty darn near to what Buddhists would define as enlightenment.

Yet... a few years before, they might have decided - that's not the way I want to live. They might have directed others: If I can no longer think rationally or take care of myself; if I must be dependent on others for all daily activities and no longer recognize my own family... please release me from that hell.

Yet... once people get there, it not necessarily hell, or not all the time. I'm not minimizing the pain of confusion, disorientation, lack of recognition of one's surroundings. That can be nightmarish (it seems) for the ill person, too.

I'm just noting that some of the things that healthy people define as essential for quality of life can disappear - and not necessarily ruin a person's life enjoyment.  

Over time, as our brains and bodies change (due to age or illness), our experiences, perceptions, and goals change too.

At the extreme, we need to be careful not to let young, healthy people define what old, ill people should want out of life, nor when they should die. Even if the young and old person are the same person.

Thanks for a great conversation, Marije de Haas  Aaron Wong, and others!


Mariah commented on Rituals of Farewell

I too love the question, "What if there were different rituals for different departures?" You're so right that dying is not one loss but a series of losses. And not only does the dying person often lose their physical abilities, the loved ones lose their own hopes and dreams for the future, their role within the family or friendship, and so much more.

Then, if/as we get better at acknowledging and creating rituals to mark various endings related to dying, maybe we can eventually create rituals to say goodbye to other abilities, expectations, and relationships earlier in life. The sixty-year-old who is not terminally ill but suffers from arthritis, for instance, might create or adopt a ritual way to say goodbye to her ability to play golf, or play the piano. Life is a series of losses (among other things) and it would really help if we could get better at saying goodbye.

P.S. - Yes, the Torajan rituals around death are fascinating! 

Thanks, Michael. Yes, she flipped the concept of suicide - usually a desperate, shocking act by a severely distressed person - into a rational decision, empowering and even loving. As I see it, Sandy Bem is on the leading edge (as she was in feminist circles) of much-needed consciousness-raising about life, death, and choice. I hope that in the future, we all feel more in control of our health-related and even death-related choices -- and am so glad the IDEO is searching for ways to improve the dying experience.  Meanwhile, a friend died yesterday, of a brain tumor, and her spouse was very clear about not prolonging life with even IV fluids, for instance, and instead providing palliative medicine while letting nature take its course. I look forward to a day when such wisdom and compassion are commonplace - not only with hospice personnel, but with medical personnel too, and ordinary family members.