Dying Matters 2012

Most people will do anything to avoid those end-of-life conversations. Who wants to talk about ‘extraordinary means’, much less who’s going to get your grandmother’s jewelry?

But doing so when we are able to not just discuss these issues but make decisions is something important for us all.

The Dying Matters Coalition was founded in London in 2009 “to support changing knowledge, attitudes and behaviours towards death, dying and bereavement, and through this to make ‘living and dying well’ the norm". It has 16,000 members (full disclosure: I’m one).

May 14-20 is Dying Matters Awareness Week. You may see stories pop up on TV and the Internet that will personify this year’s theme “Small Actions, Big Differences”.

It’s a great theme, because it explains those end-of-life conversations so well. Making decisions now about the kind of care you want will make a big difference not only to you, but to your family and friends.

Procrastinators do no favors for those left behind. The survivors will have a mess to clean up when you’re gone. But the worst part for them will be standing in a hospital corridor, talking to a doctor and admitting “I have no idea what they’d want.” They’ll have to guess, and they have a 50/50 chance of being wrong.

You probably have a clear idea of what you want, even though you’ve never articulated it. Because most likely, you know the kind of death you don’t want. Start with that.

Dying Matters website is a great source of information and forms to get you started. Yes, it’s a terribly uncomfortable and difficult subject to broach. But it’s important that everyone’s wishes for a “good death” are honored. And the only way that can happen is if they’re shared

You can also find Dying Matters on Facebook Dying Matters and on Twitter @DyingMatters

Dying Matters - For Friends, Too

I’m in my best friend’s will.

She told me long ago what she was leaving me. It has no value to anyone in her family; in fact, she’d prefer they didn’t open the box at all. It’s a personal keepsake of our past, mostly high school.

I think it was when I was in St. Louis for her father’s funeral that I told her there was huge flaw in this plan. “You’re assuming you go first,” I told her. After a moment, she agreed that was problematic. (Plus, I really, really, really would like to have that box now.)

This week is Dying Matters week in the UK, a time for people to at least begin the difficult conversations we must have but try to avoid.

When we attend funerals we often reflect on, for example, the choice of music and say “I want that at my funeral” or “that reminds me of what I want at my funeral.” (I think my will specifies “Spirit in the Sky” and “I Happen to Like New York”, but I’ll have to double-check that.)

But if you’re like most people, you haven’t given those kinds of plans any thought. You haven’t even told anyone what kinds of treatment you want if your death is near. A recent study showed that 59% of people in the UK don’t want to die in the hospital. What the study didn’t reveal is how many of them have actually told anyone of those wishes. It’s important for many reasons, including the possibility that you will not be able to communicate those wishes when the times comes.

Don’t just discuss this with your family: include your friends. Ask them if they’ve made any plans, have any opinions on what they want or don’t want.

Need guidance? Check out http://www.dyingmatters.org/ for materials on how to have those conversations: with yourself and others.

Watch The Big Chill and check the playlist on your iPod; you may get some ideas there.

Online Resources: Dying Matters

Despite all the hysteria about ‘death panels’, there is a critical need for each and every one of us to thoughtfully consider end-of-life plans. It’s an uncomfortable subject for most people. But avoiding the subjects of where we want to spend our final days and how, what kind of services we want held, and how we want to be remembered will not make them go away.

Dying Matters is a UK-based nonprofit coalition. This is from their website:

“In 2009 the National Council for Palliative Care (NCPC) set up the Dying Matters Coalition to promote public awareness of dying, death and bereavement. Our members include organisations from across the NHS, voluntary and independent  health and care sectors (including hospices, care homes, charities supporting old people, children and bereavement); social care and housing sectors;  a wide range of faith organisations; community organisations; schools and colleges; academic bodies; trade unions; the legal profession and the funeral sector.

The Coalition’s Mission is “to support changing knowledge, attitudes and behaviours towards death, dying and bereavement, and through this to make ‘living and dying well’ the norm". This will involve a fundamental change in society in which dying, death and bereavement will be seen and accepted as the natural part of everybody’s life cycle.

Changes in the way society views dying and death have impacted on the experience of people who are dying and bereaved. Our lack of openness has affected the quality and range of support and care services available to patients and families. It has also affected our ability to die where or how we would wish.
The Dying Matters Coalition is working to address this by encouraging people to talk about their wishes towards the end of their lives, including where they want to die and their funeral plans with friends, family and loved ones.”

May 16-22 is “Dying Matters Awareness Week”. On their website, www.dyingmatters.org, you will find materials and resources for helping make those important decisions: for yourself, your family and even your friends.

Pledge to never again say “I didn’t know what they wanted.”