Knocking On Heaven’s Door

Written by on July 28, 2014 in Reviews with 0 Comments

The Path to A Better Death…

Many books and long magazine articles have been written by adult children about the death of one or both parents.   These are mostly heart-rending stories about how things went wrong.   True, a few are about how things went right. But most are about the failure of doctors to give the family an honest assessment of what lay ahead, especially failing to even hint that after a procedure the patient’s recovery may not be back to the current state of health, or that the longevity benefit might be only a few weeks or months.

One of the best books is last year’s by Katy Butler, Knocking on Heaven’s Door, the Path to a Better Way of Death.   Butler is a free-lance writer living in the San Francisco Bay Area.  Her father suffered a long decline after a stroke and the decision to insert a pacemaker.   Her mother as caregiver saw what her husband went through, and declined open-heart surgery.  She died a year and a half after her husband.    Since publication, Butler has continued to write and talk about her family’s experiences, what is wrong with our medical system, and how we as a society don’t face up to the realities of death.

As part of her effort to spread the word Sam Mowe of The Sun Magazine  interviewed her and published the interview as “The Long Goodbye” .

The interview has many wonderful quotes in it; so good that I’m going to give some of them to you.   If you want more of Katy Butler, and there is a lot more, please read the article or her book.

Hold on for a fun read, bouncing around Butler’s wonderful interview.

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Quotation marks  indicate Butler talkikng  in The  Sun interview.  Text not in quotes is this author’s effort to give context and meaning to the quotes.  Hold on for a fun read, bouncing around Butler’s wonderful interview.

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Yes, we are indeed fortunate to have medical technology.  “But if you’re in your eighties and suffering from dementia, diabetes, and colon cancer, then no.  You’re very unfortunate to have access to these technologies, which can only prolong your life beyond the point at which it holds any pleasure or meaning.”

“[I] don’t think we’re being honest about how much suffering typically results from procedures that, at best, might get the patient another month or two and often don’t extend longevity at all.”

“[T]he whole family should be regarded as the patient. . . . I think you have to look at whether you’re adding suffering to the family as a whole when you extend the life of an individual.”

“[P]atients’ wishes are often not respected.  Some doctors rip advance directives out of medical charts if they disagree with them.  They argue with patients. They guilt-trip family members who are against certain treatments. Those doctors want to do what they consider best, and they do not believe patient autonomy ought to trump their recommendation.”

“It’s really not fair to the ICU doctor if we dump on him or her the result of other doctors kicking the can down the road for five years or more, never having the tough conversations with patients, never telling them, ‘You are approaching the end of your life,’ because it’s almost taboo to say so in this culture.  The ICU lies at the end of a long series of mistakes.”

The ICU “. . . is the worst possible place to die: a cold sterile environment of beeping machines.”

One of the most powerful lobbies in Washington, D.C. is healthcare.  “And the big players in healthcare are not the family doctors and the speech therapists.”  They are big pharma, device manufacturers, medical specialists.  ” The result is that expensive, high-tech fixes are over-rewarded and over-promoted.  Meanwhile the hospice benefit has eroded and can’t provide as many services as it used to.”

“Nobody is in charge but the marketplace. . . . Medicare will not pay doctors decently for the time it takes to say, ‘It’s not a good idea to put a pacemaker in your dad,’ or, ‘Another round of chemotherapy will not benefit you.’  But [Medicare] will pay a fortune for drugs and devices.”

“We pay doctors very well for deploying technology and very poorly for spending time with patients.”

“[U]ntil we change those financial incentives, I don’t think the situation is going to get better.”

“When care is not only futile but expensive and painful, we ought to think about [cost]. . . .”

“[B]ecause Medicare spends a quarter of its budget on healthcare for the last year of people’s lives, it doesn’t have the funds to adequately fund hospice, home health aides, speech therapy, and palliative care.”

“In England there is a spending limit.  If something costs less than forty-seven thousand dollars for a year of life gained, the English medical system will pay for it.   But if the cost is more, it won’t pay. On the whole, the English are OK with this.”

“We need to start thinking of death as a five-year pathway and not as a last-minute event that’s going to be tidy and quick. . . . The unhealthy pathway is to deny, deny, deny. . . .”

“To me, if I have enough memory loss that I’m locked up in ‘assisted living’ or ‘skilled nursing,’ I would rather be dead.”

Discussions are not “… strictly medical or legal. They’re not just pieces of paper.  They are discussions about your deepest values:  Whom do I love and trust? What makes my life worth living? Do I have a right to say ‘Enough’?  How do I want to die?  What do I owe my descendants?  When is it ok to let go?”

If you disagree with anything Ms. Butler says, please comment.   Let’s have a discussion.

In my next blog I am going to quibble a bit about a few things she said in The Sun article – things to think about.

 

Bill

 

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