Letting Go ....What Should Medicine Do When it Can't Save Your Life ... Dr. Atul Gawande:

[RedEarth]

Sara Thomas Monopoli was pregnant with her first child when her doctors learned that she was going to die. It started with a cough and a pain in her back. Then a chest X-ray showed that her left lung had collapsed, and her chest was filled with fluid. A sample of the fluid was drawn off with a long needle and sent for testing. Instead of an infection, as everyone had expected, it was lung cancer, and it had already spread to the lining of her chest. Her pregnancy was thirty-nine weeks along, and the obstetrician who had ordered the test broke the news to her as she sat with her husband and her parents. The obstetrician didn’t get into the prognosis—she would bring in an oncologist for that—but Sara was stunned. Her mother, who had lost her best friend to lung cancer, began crying.

The doctors wanted to start treatment right away, and that meant inducing labor to get the baby out. For the moment, though, Sara and her husband, Rich, sat by themselves on a quiet terrace off the labor floor. It was a warm Monday in June, 2007. She took Rich’s hands, and they tried to absorb what they had heard. Monopoli was thirty-four. She had never smoked, or lived with anyone who had. She exercised. She ate well. The diagnosis was bewildering. “This is going to be O.K.,” Rich told her. “We’re going to work through this. It’s going to be hard, yes. But we’ll figure it out. We can find the right treatment.” For the moment, though, they had a baby to think about.

.........


She worked hard to take the setbacks and side effects in stride. She was upbeat by nature, and she managed to maintain her optimism. Little by little, however, she grew sicker—increasingly exhausted and short of breath. By November, she didn’t have the wind to walk the length of the hallway from the parking garage to Marcoux’s office; Rich had to push her in a wheelchair. A few days before Thanksgiving, she had another CT scan, which showed that the pemetrexed—her third drug regimen—wasn’t working, either. The lung cancer had spread: from the left chest to the right; to the liver; to the lining of her abdomen; and to her spine. Time was running out.

This is the moment in Sara’s story that poses a fundamental question for everyone living in the era of modern medicine: What do we want Sara and her doctors to do now? Or, to put it another way, if you were the one who had metastatic cancer—or, for that matter, a similarly advanced case of emphysema or congestive heart failure—what would you want your doctors to do? The issue has become pressing, in recent years, for reasons of expense. The soaring cost of health care is the greatest threat to the country’s long-term solvency, and the terminally ill account for a lot of it. Twenty-five per cent of all Medicare spending is for the five per cent of patients who are in their final year of life, and most of that money goes for care in their last couple of months which is of little apparent benefit.



http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all

[xchrom]

1. It's part of the relationship we develop with

Doctors/medicine.

Shrug - I would want out peacefully.

But if I think about a young family? Oy.

[Warpy]

2. I know what decisions nurses make

because nurses are the ones who see what people go through when they're grasping at straws. In the case above, a nurse would choose to have and meet her baby and to have as much good time as possible with that baby and that means no chemo, no radiation, just hospice and enough pain medication to function until the end. Then goodbye.

Doctors too often see themselves as conquering heroes even when the fight is already over. When they should be trying to give the person as much good time as possible, they often ruin every bit of time that person has left with the horrible effects of chemotherapy, radiation and surgery. There is no honest explanation of this: four months of good time followed by a month of final illness and death versus eight months of illness followed by death.

As for the spending at the end of life, often we don't know it's the end of life until one problem results in a cascade of other problems, a person with a broken hip getting that fixed and developing blood clots or pneumonia or other complications piled on complications. There's no way to avoid that sort of thing except listening to the patient when he or she says enough is enough, just make me comfortable and let me go.

Docs often have a hard time hearing their patients.

[supernova]

3. Heard this in NPR yesterday

They did a pilot program that let patients sign up for hospice w/o benefit of a "dead in six months and here, sign a DNR" diagnosis. They let people go home with what hospice does so well, which is palliative care. Your pain is managed appropriately. Wound care. You have all the equipment you need at home: bed, nebulizers, ... whatever you need. They also helped you get "better" if you wanted to get out and about for some reason: family events, special trip, and so forth.

The patient did not have to give up the right to go to the ER or for other extraordinary measures, if they felt they needed them.

The upshot was that people who had Hospice AND standard care actually chose, on their own, when they had had enough and chose hospice when it was appropriate.

Signing a DNR seems to be a big psychological stumbling block. Too final too early?

This Dr is very compassionate, IMO.

[T Wolf]

4. I recently went through this with my father. The treat-until-the-end protocols

are endemic to the "medical" model which is not really useful or appropriate to end-of-life issues.

Example - a physical therapist entered his ICU room to do her thing. He was unconscious and would never regain consciousness. I spoke up and asked that she skip that session. She agreed and left.

We have to do a better job of educating people about hospice care, and change policy to allow more and better hospice care for those who need it.

If we are to provide quality health care to everyone, we do have to make better decisions on how to allocate resources (medical and financial).

On a personal note - I have decided and documented my desires to not waste resources at the end.

[Warpy]

6. I thought my dad had great rehab potential after his heart attack

and would certainly do well enough to go to a resort like assisted living facility he'd once mentioned as a possibility. I didn't think he'd get too much time, but it would be independent time.

Then he told me he was tired and hoped he'd just go.

At that point I assembled the troops and he did the formal DNR.

I hoped he'd rally until the final day, but he had other ideas. He wanted to go and he went. Making himself DNR was the smartest thing he could have done, otherwise he'd have spent his last hours being tortured by the best medical care Medicare could buy.

Still, it's one of the hardest things I've ever had to do. A doctor wouldn't have listened to him. His daughter, the RN, did.

[Lydia Leftcoast]

5. I've seen it go both ways

There was an 87-year-old woman in my church, active and involved in everything, who was diagnosed with cancer. She chose to forego treatment and died within 5 weeks. Her philosophy was that she had lived a good life and her children and grandchildren were doing well, so what was the point?

On the other hand, a 70-year-old of my acquaintance happened, through a lucky series of events, to find out that she had cancer while it was still small and localized. She opted for treatment, and now four years later, has been traveling the world and going on camping trips. The cancer has come back once, but now she's in remission again and enjoying life to the fullest.

I think a lot depends on what stage the cancer is at when it is discovered. If it's metastatic, etc., I think I'd prefer just to let nature take its course. The wife of a friend of mine started getting breast cancer at an early age, and after the fourth recurrence, she just declared that she didn't want to go through treatment again, because dying certainly couldn't be more miserable.