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Whether ‘tis nobler when the mind is gone to
Suffer the pokes, prods and pills of medicine
Or to take arms against a sea of doctors and nurses
And just say “Enough!”

(With all due apologies to Bill.)

My mother has never been formally diagnosed with dementia or Alzheimer’s.  When it became obvious to all around her that her memory was failing, she refused to submit herself to the tests which would have labeled her condition.  I didn’t disagree with her choice at the time—a name tag that said “Hi, my name is Loretta and I have Alzheimer’s” would have changed nothing in the course of her disease or its treatment.

As time has passed, the deterioration has accelerated, helped along by multiple hospitalizations for co-morbidities such as congestive heart failure and recurrent UTIs.

Each time she’s admitted to the hospital, she comes out a little more confused and a lot weaker.  Over the course of half a dozen hospitalizations in the past three years she’s managed to contract at least two nosocomial infections which required a week’s IV antibiotics at home.  Nasty, nasty bugs.

Since the first of the year, she’s been on at least four different antibiotics for UTIs and spent 3 nights in the hospital for same.  We now have home health nurses coming to check on her every few days, and a couple of days ago the nurse told me that the last urine sample cultured “something” and they wanted me to take her to the Emergency Room if she got worse.

I said “No,” and the nurse looked at me in shock.  I explained that we weren’t being abusive or neglectful, but that I, as her health care surrogate, in consultation with my siblings and our regular caregivers had decided that the risk/reward of additional hospitalizations for things we could treat at home favored keeping her in familiar surroundings.

Last weekend, while sorting through files, I came across an article written by Atul Gawande, called Letting Go.  He discusses the medical profession’s inability to help some patients, and the inability of practitioners (including himself) to help patients with terminal conditions come to terms with the realities of their situation.  

He suggests that if doctors were more upfront with their patients about the likelihood of treatment extending life and the diminution of quality they are likely to experience in their remaining months, fewer patients would opt for the ‘grasping at straws’ treatments, and would instead spend their remaining time and energy enjoying the things that bring them pleasure.

Instead, modern medicine has made formerly straightforward terms like “living” and “dying” harder to define.  Is a person really alive if they’re on a ventilator, given multiple drugs and therapies to keep their organs functioning, but with virtually no hope that they will ever improve?  Does quality of life even enter into the calculus?  

He says:  

The trouble is that we’ve built our medical system and culture around the long tail.  We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win.  Hope is not a plan, but hope is our plan.
Studies have show that patients who accept hospice care do not have measurably shorter life spans than those who choose aggressive treatment, but, of course, the devil is in the details.  When is it appropriate to “give up” and accept that a patient, or a family member, is going to die?  To do so shifts the focus from the possibility, however remote, of a cure, to helping the patient and their family accept the reality of death and giving them the opportunity to prepare for it as best they can—to think about what’s important to them.  

During the health care debates, one community which was held up as a model for aging and facing death realistically is La Crosse, Wisconsin.  In La Crosse, since 1991 there has been a systematic campaign to get doctors to discuss end-of-life issues with their patients.  

I’m sure most of us are familiar with “living wills” in one form or another.  The questions they ask can be complicated and daunting.  In La Crosse, they’ve simplified the process.  All patients admitted to either a hospital or skilled nursing facility are asked four crucial questions.

At this moment in your life:

1.    Do you want to be resuscitated if your heart stops?
2.    Do you want aggressive treatments such as intubation and mechanical ventilation?
3.    Do you want antibiotics?
4.    Do you want tube or intravenous feeding if you can’t eat on your own?

In just five years, La Crosse went from fifteen percent of its population having advance directives to eighty-five percent.  Patients are free to change their answers at any time, but the mere fact of making the discussions ubiquitous means that the residents have thought about death and quality of life, and they are much more likely to have a realistic approach to medical care.

Watching my mom’s deteriorate, both mentally and physically, my brother and I have occasionally commented: “If she was a dog, we would have done the humane thing by now.”  But, like most families, we didn’t have the hard discussions—how much treatment should she receive (be subjected to).  When is enough enough?  

Inspired by Dr. Gawande, I asked my brother exactly what his thoughts were—how aggressively he would like my mom treated?  I was pleased and surprised to find us on the same page almost across the board.

So, the decision has been made—no more antibiotics, no more hospitalizations.  She will die at home, in surroundings that are at least for now, familiar.  It may be a month, it may be a year from now, but her family is united in the effort to give her the best quality of life we can manage, no matter how long that time may be.

Note--Please, no well-meaning suggestions about cranberry juice/pills, hygiene, etc.  We know the etiology of the infections, caused by damage from radiation treatments years ago.  She's been evaluated and treated both locally and at the Mayo Clinic for the UTIs.  This has been going on for years, and there are no 'magic bullet' cures out there.

Originally posted to puzzled on Sat Apr 06, 2013 at 03:42 PM PDT.

Also republished by Community Spotlight.

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