Death gives life meaning. It creates the contrast, and finally offers the reality of who we really are. These days, very few will worry about burning in hell, some might still fear death, but many of us are now worrying about dying. Why?, you may ask. Most doctors have witnessed patients die undignified, soulless, high-tech deaths and hoped for something better for themselves and their patients. Most of us now have watched the same horrific and inhumane tragedy. But what does a good death look like and how high a priority should it be for health services?
If death is defeat, then it won’t be a high priority. But if a good death is the conclusion of a good life then it has to be a priority. I am watching a number of friends die. They are at varying ages; some are dying not so much from disease than from old age, and one younger friend who is dying from diseases causing symptoms the same as old age. None of them are in acute medical states. All of them are in bodies that are shutting down. What is becoming clear to me is a good death is that one size won’t fit all. We want to be as different in dying as we are in living. Different cultures, times, and religions have different concepts of a good death. Some want it sudden, some slow. Some want a quiet death with minimal medical involvement.
Others want to follow Dylan Thomas and rage, rage against the dying of the light, squeezing every last drop from life. A few choose to kill themselves, while others would like to be killed (euthanasia). Even in countries that have legalised euthanasia few chose to die that way, suggesting that perhaps it’s far less important than we want to believe. But pressure to legalise euthanasia seems likely to grow and combine with people wanting increasing choices on how they die. Is death the ultimate form of consumer resistance, consumer choice?
As the baby boomers turn their thoughts to death they are unlikely to accept the squalid end that may happen in a health service almost completely preoccupied with life at the expense of death. The diagnosis of dying is one of the most crucial that a doctor must make. It is one of the most difficult we will ever receive. Research shows that doctors consistently overestimate the time patients have left to live. In order to help patients to a good death doctors must readjust themselves, recognising that death is closer than they think, and usually closer than the dying person wants.
We must recalibrate ourselves and accept also that a death of a loved one is almost always sooner than we would wish for. And more than that, we must learn to celebrate their lives, and our relationships, together as one, with as much love as possible, before they die.
Hi Kate, The question of Death and informing a loved one living with dementia arose among some students. (who are undertaking a further study course in dementia with AAV) about a real life situation where a adult child has been killed in an accident. Family and staff are divided on whether to tell the older parent who is living with dementia . Some fear is that the person may constantly relive the trauma. Some think that they have a right to know and the right to grieve.
I am hoping you and other readers of your blog can provide some guidance and insight on the issue of death and telling a loved one who is living with dementia.
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Oh Chris… a tough question for sure. I’m not sure I’m the one to advise, I can only tell you what I would want or do. If it were me caring for someone I love, I actually have no idea what I would do – but I really hope I would be honest. Who knows until it happens to you…
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Hi Kate
I just found your blog via the “younger onset” blog ….
I’m “only” 45 yet was diagnosed with a form of dementia 14 years ago and since then I’ve faced a LOT of problems besides the dementia (about 20 different medical problems) and am quite housebound because of really bad fatigue ……. my dementia however has stopped progressing so I’m not going mentally “downhill” ……. but I’ve still got the same problems as you ……. don’t want to pay for a movie that I forget while I’m watching it etc…
I’ve been supporting the legalisation of v.e. for about 12 years now – I used to worry about my future since i”m at risk of cancer again (had it 14 years ago with the dementia) stroke and dementia progressing. But I don’t worry anymore since I hope that it will be legal by the time I need it. And if not, then I’ll hopefully be able to help myself even if it isn’t with something peaceful like an injection or pill (although a pill isn’t going to be useful if I have a stroke and can’t swallow …..)
I follow the press vehemently, I’ve met Philip Nitschke, I’m a member of a few VE organisations and do what I can. Unfortunately I can’t make it to meetings anymore 😦
Thanks VERY much for bringing up the topic 🙂 I could say SO much more but I won’t …. I also suffer from another disease – verbal diahhrea – so I won’t let it out on you!!! 😉 😉
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You raise excellent points my friend. I have always felt we were kinder to our pets in death than our loved ones. I would happily campaign to make things different. There is so much about this inhumane life we live to be changed. It is hard to know where to begin. Here is a good place i guess. Thanks Kate….VK
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I’ve seen a lot of death, some sudden and some drawn out. On Wednesday, I had some good news about a health issue I was having, but in the couple of days leading up to the test results, I thought about all of things you wrote about in this post. Thankfully, I can sweep those thoughts under the table for now.
On a different note, thank you for pointing us in the direction of Office of Letters and Light http://blog.lettersandlight.org/ I forwarded the site to several teacher friends.
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