Dying Well

The Good Death: 10 Things I Want and Don’t Want When I Die

One.  I don’t want to prolong my life at the expense of quality.

We all know that the word “euthanasia” means “a good death”. The antonym of “euthanasia” is “dysthanasia” which means — you guessed it — “a bad death.” On a more practical level, “dysthanasia” is “generally used when a person is seen to be kept alive artificially in a condition where, otherwise, they cannot survive.” The bad death is a modern, medical induced phenomena where every attempt is made to hold back the inevitable; and yet, as Luis Buneul states, it ends up being an “exquisite form of torture.”

Two.  I want to die at home.

I want to die at my home, surrounded by my family.

Three.  And if I die at home, I want hospice.

Atul Gawande writes in his New Yorker piece,

(Doctors) sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focussing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.

Four  I don’t want to die in a nursing home.

I don’t like nursing homes. Let me qualify that statement: I understand that nursing homes are at times necessary and I understand that nursing homes provide invaluable care for those who need it; farther, I know that the nurses and their staff provide continuously care often at their own emotional expense.

But, I don’t likely the crowded loneliness inherent in these buildings, I don’t like the way nursing homes suck away money and I don’t like how some nursing homes are used to shelve away the weakest people in society.

Five.  If the chance presents itself, I’d like to die heroically.

Sacrificing my life while saving drowning orphans from a sinking boat.

Dying while defending the rights of unicorns.

Pulling a James and Lily Potter: Giving my life to save my son from Lord Voldemort.

Six.  I want the option of Death with Dignity.

If I find myself in a situation where I have a terminal illness that will cause great family distress or personal pain, I want to have this option available to me.

Seven.  I wouldn’t mind dying of cancer.

I know that’s a controversial statement, so let me qualify it: When cancer strikes the young and middle-aged, it’s always horrible per se.  But, when it strikes the aged — in terms of comparison and contrast — it’s not always the absolute worst way to reach the inevitable.  Sometimes it might be the best possible option.  It allows you to say your goodbyes, “get your house in order” and provides a set period of “quality time” to spend with your family and friends.  When I’m older, it’s a much better option than a sudden heart attack, dementia or a slow and methodical wasting away.

Eight.  I want total honesty from my doctor.

I have some skepticism when it comes to the medical community, especially when it comes to end of life care.  While I believe that most doctors are honest, there are ulterior motives when it comes to cancer treatment and the like.  While most doctors explicitly lay out the options for their patients, some will lay out the options that pad their pockets and suck the system.  I want to be socially responsible when I die.  I don’t want to suck hundreds of thousands of dollars out of the system so I can live a couple more months.   I want total honesty from my doctor.

Nine.  I want the least pain possible.

I’m not going to be prideful.  If I have the option to manage my pain, I’m going to take it.

Ten.  I want my family to know my advanced directives.

If I don’t die saving them from Voldemort, I want my family to know my advanced directives so that — if a situation ever presents itself — they can feel confident that they know what I wanted.  Although they might not agree with my advanced directives, or want them, at least they can know they honored my last wishes and so honored me in my death.

 

 

 

The Pain of Nursing Home Placement

Maybe it’s shame

Maybe it’s fear

Maybe it’s acknowledgement

That the end is near.

*****

Maybe it’s the halls

The impersonal room

That looks and feels

Like a living tomb.

*****

Maybe it’s the money

$500 a day

Eating retirement

And inheritance away.

*****

Maybe it’s the crowd

Of lonely souls

Who have death

As their only goal.

*****

Maybe it’s hurt

And maybe it’s the pain

That she doesn’t even

Remember your name.

*****

Maybe it’s the smell

Of those dying

That permeates the rooms

Of those left lying

*****

In beds so cold

While TVs fill

The hours and minutes

They’re trying to kill.

*****

Maybe it’s the inadequacy

You feel inside

That she cared for you

And now you can’t provide

*****

She birthed you

And nursed you

But you can’t reciprocate

And see this through.

*****

You tell yourself

“The staff is great”

And it’s true

There’s no debate.

*****

“This is for the best”

You have to say

Again it’s true

But it feels so grey.

*****

It’s hard and painful

And pricks the guilt syndrome

When you put a loved one

In a nursing home.

If you give yourself, you won’t be forgotten: a reflection on Alzheimer’s disease

Alois Alzheimer's patient Auguste Deter in 1902. Hers was the first described case of what became known as Alzheimer's disease. "Auguste D aus Marktbreit" by Unknown - Unknown. Licensed under Public Domain via Wikimedia

Alois Alzheimer’s patient Auguste Deter in 1902. Hers was the first described case of what became known as Alzheimer’s disease.
“Auguste D aus Marktbreit” by Unknown – Unknown. Licensed under Public Domain via Wikimedia

The Promethium advances of medical science

Watch from the sidelines as deteriorating minds

Are rendered to a nascent infancy where

Memory

Words

And person

Fade backwards into nothing.

 

If you give something away you don’t lose it.

 

“Nothing can be done” your doctor sheepishly admits

“Your time is slowly fading”

Your questions like,

How long?

When will I lose my license?

Will I be violent? What will I become?

Are met with a simple, “I don’t know.”

The anticipatory grief begins.

 

If you give something away you can’t lose it.

 

Time is now a precious commodity

Time is now your worst enemy

Time will fade you

Time will take your memories

Now and only now is your best time

Now is the time to get the house in order

 

When you give your memories away you can’t lose them

 

Active management for such a passive disease

Write it down

Record it.

Share “that one time . . .”

Use that time to give, give and give.

Give yourself away.  Quickly.

Time is running out.

Because . . .

 

If you give yourself, you won’t be forgotten

 

A Revolutionary Plan for End-of-Life Care

Here’s a guest post and promotional from Dr. Angelo E. Volandes:

There is an unspoken dark side of American medicine-keeping patients alive at any price. Two thirds of Americans die in healthcare institutions tethered to machines and tubes at bankrupting costs, even though research shows that most prefer to die at home in comfort, surrounded by loved ones.

Dr. Angelo E. Volandes believes that a life well lived deserved a good ending. In The Conversation: A Revolutionary Plan for End-of-Life Care, he shares  the stories of seven patients and seven very different end-of-life experiences.  These stories demonstrate that what people with a serious illness, who are approaching the end of their lives, need most is not new technologies but one simple thing: The Conversation. He argues for a radical re-envisioning of the patient-doctor relationship and offers ways for patients and their families to talk about this difficult issue to ensure that patients will be at the center and in charge of their medical care.

It might be the most important conversation you ever have.

Here’s a video that captures its message.

“Death From Cancer is the Best”

Dr. Richard Smith, a former editor of the British Medical Journal, wrote recently, “death from cancer is the best.”  And I think many of us, if not most of us, would disagree — to one extend or another — with Dr. Smith.      

Cancer can create an embarrassment of dependence for it’s dying victim, causing the possibilities of:

Uncontrolled bowel movements,

Intense fatigue

Wasting away (cachexia)

Pain.

And, of course, there’s the equally horrible side effects of chemotherapy and various other cancer treatments:

Nausea and vomiting

Hair loss

And more pain.

So, what in the hell is Dr. Richard Smith talking about?  Has he considered how many small caskets cancer has filled?  The emotional stress, the exorbitant amount of money spent and the powerless insurance fights?  How can an end-of-life that involves so much pain, money, dependence and cachexia be considered a “good death”?

He writes, with a bit of pithiness, about the good death of cancer:

“You can say goodbye, reflect on your life, leave last messages, perhaps visit special places for a last time, listen to favourite pieces of music, read loved poems, and prepare, according to your beliefs, to meet your maker or enjoy eternal oblivion,” he says.

“This is, I recognize, a romantic view of dying, but it is achievable with love, morphine, and whisky. But stay away from overambitious oncologists, and let’s stop wasting billions trying to cure cancer, potentially leaving us to die a much more horrible death.” — Via the BMJ Blog

There’s over 100 different types of cancer and not all cancers are equal; some are are much more deadly and others more painful.  And I hope that Dr. Smith’s statement isn’t a blanket, meant to cover all types and forms. If he is making a blanket statement, he’s wrong.

Yet, I think the other metanarratives of “cancer sucks” and “cancer is the enemy” are equally wrong.

Luis Buñuel writes:

“An even more horrible death is one that’s kept at bay by the miracles of modern medicine, a death that never ends. In the name of Hippocrates, doctors have invented the most exquisite form of torture ever known to man: survival.”

We all know that the word “euthanasia” means “a good death”.  The antonym of “euthanasia” is “dysthanasia” which means — you guessed it — “a bad death.”  On a more practical level, “dysthanasia” is “generally used when a person is seen to be kept alive artificially in a condition where, otherwise, they cannot survive.”  The bad death is a modern, medical induced phenomena where every attempt is made to hold back the inevitable; and yet, as Luis Buneul states, it ends up being an “exquisite form of torture.”

Part of the reason that cancer is often seen as bad death is because of the medical community’s attempt to use nearly every means possible to “cure”.  Even when the prognosis is terminal, there seems to this held out hope in the miracle of modern medicine.  And so, it’s not necessarily the cancer that is “dysthanasia”, but the treatment of it.

It also seems that our hatred towards cancer death is caused by framing cancer in a war narrative, where cancer is seen as “the enemy.”  There are some problems when we frame cancer using a war narrative.

In earlier research, investigators found that war metaphors can lead to feelings of guilt and failure in patients who die of cancer, even though they have little control managing it.

Hauser says that medical professionals and media outlets should try to help expand the way that people think about the disease. He cites the “watchful waiting,” a passive method of treating prostate cancer, as one such example.

“What would be more beneficial would be changing the sorts of stories about cancer out there to expose aspects of the disease that don’t fit with this enemy conceptualization,” he says.  “Blame is being put on the patient, and there’s almost a sense that, if you are dying, you must have given up and not have fought hard enough,” said the study’s author, Lancaster University professor Elena Semino, in a statement  Via TIME

Sometimes — not all the time — cancer IS the good death.  To start out with the assumption that cancer IS the enemy may rob us from enjoying the final days of our lives.  Sure, there are times when cancer is a horrible death and times when it is the enemy, but not always.  Cancer is what it is … it’s one way out of thousands that might pave your path to the inevitable.  You will die.  I will die.  We will all die.  And it’s very possible that cancer is a gracious way to end.

While we should hate the fact that cancer causes death (yes, cancer sucks), in terms of comparison and contrast, it’s not the absolute worst way to reach the inevitable.  And while it mostly sucks, sometimes it might be the best possible option.

 

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