Wednesday, November 24, 2010

Manhattan or Mason City - Where to Die?

A Hospital in Manhattan, NY
Joe Manhattan has advanced stage IV esophageal cancer. It started with minor symptoms as he reached the age of 75. Initially he was treated with acid blockers, but then solid foods began hanging up when swallowing. He was referred to a GI specialist who looked down into the esophagus and found an obstructing malignant tumor confirmed by biopsy. Joe then was seen by a surgeon who evaluated his tests and CT scan. There was a suspicious spot in the liver, but the degree of obstruction in the esophagus was progressing.

It appeared best to try a resection combined with some chemotherapy and radiation - there were different protocols to choose from. Joe gives these his best shot and initially has some improvement and weight gain. But then he has some back pain which proves to be tumor spread to the spine with new areas in the lungs as well. Joe is given the information and has discussion with his wife and family.

This care is a reasonably typical scenario so far for both Manhattan and Mason City, but the subsequent care proves markedly different. Joe Manhattan's Oncologist offers a new research chemotherapy protocol. Joe's pain hasn't been well controlled with spinal radiation and he's becoming desperate. More chemo is given. The next week he has a temperature of 104 and is extremely weak. He's admitted to the hospital and found to have a very low white blood cell count (WBC) and bacteria growing in the blood stream. He's given drugs to stimulate the bone marrow to produce more WBC's and three "big gun" antibiotics to combat the infection. On the second day, Joe's blood pressure drops severely and the kidneys appear to be shutting down. He's transferred to the ICU for monitoring. He's bleeding internally and failing. The family in consulted and given the options of "letting him go" or continuing to fight on. The family is not certain of Joe's outlook and he has not completed an advance directive. The doctor's seem reluctant to give their opinion. One of the children is out of town and hasn't arrived yet. Suddenly Joe's heart stops, a "code" is called, and the crash cart team begins CPR, inserts an endotracheal tube, placing Joe on a ventilator for life support. An urgent family conference brings in a social worker to have more discussions with the family. After three days on life support, Joe dies in the ICU after the family agrees to withdrawal

A Hospital in Mason City, Iowa

What about Joe Mason with the same diagnosis in Iowa? After Joe's stage IV cancer diagnosis he's told that medical treatments can't really cure him, but that there are some options which may help him have a reasonable quality of life. So Joe elects to go through the same rather aggressive treatments with surgery, radiation and chemotherapy. During this time Joe, his family, his pastor and best friend meet with the care team which includes his doctors, nurses and a social worker. His wishes concerning quality of life are noted: "no CPR or tube feeding, just keep me comfortable free of pain and suffering." A Living Will is signed as is a notarized Durable Power of Attorney for Health Care. Joe is introduced to hospice and begins to get regular visits and calls from the hospice nurse and doctor to adjust his pain medications. Hospice provides a hospital bed, even a massage therapist. Joe completes a POLST form to ensure his wishes are met. As he worsens toward the end, he does develop a fever which is not associated with pain or suffering. No antibiotics are given per his wishes. Small doses of morphine given hourly help him at the end. He dies at home with his loved ones nearby.

Comment: Recently a report from Dartmouth Atlas shows wide variation across the country in end of life care for persons over 65 with advanced cancer. In several Manhattan hospitals nearly 50% of such patients die in the hospital whereas only 7% die in the hospital in Mason City, Iowa. The data shows wide variation among academic institutions as well. Here are the major findings:

"1. Across many regions and academic medical centers, over one third of patients with poor prognosis cancer spent their last days in hospitals and intensive care units. A significant proportion of patients received advanced life support interventions such as endotracheal intubation, feeding tubes and cardiopulmonary resuscitation (CPR).

2. The use of chemotherapy in the last two weeks of life overall was about 8% of patients, but in some regions and academic medical centers the rate exceeded 10%.

3. The use of hospice care varied markedly across regions and hospitals. In at least 50 academic medical centers, less than half of patients with poor prognosis cancer received hospice services.

4. In some hospitals, referral to hospice care occurred so close to the day of death that it was unlikely to have provided much assistance and comfort to patients."

The variation in care could not be accounted for by age, race, ethnicity, etc. A great concern is that the availability of high tech procedures and hospital beds appeared to be a factor in aggressive care. Some communities have adopted much more aggressive interventions than others as a local standard of care. Also, poor communication and not really understanding a patient's wishes seemed at play.

Martensen in his book A Life Worth Living notes that "more is not better.." Further that "... sick elderly people who endure the aggressive treatments that our 'best' medical centers routinely administer near the end of their lives tend not to survive any longer than those who avoid such treatments. All that has progressed, in most of these situations, is the length and agony of dying."

What does the future hold? I'm optimistic but the changes needed won't be easy. I hope that our hospitals, medical societies, and our training institutions can take this data as a baseline for modeling a quality of care initiative. The book The Checklist Manifesto by Atul Gawande may be a helpful guide in implementing the improvements needed.
Gawande, who also wrote an article "Letting Go", understands that variations in care can be systematically addressed and improved. Let's hope that Manhattan can learn from Iowa and that the major teaching hospitals can lead the way to improvements in end of life care.

1 comment:

  1. Some doctors seem so reluctant to suggest hospice - it's as if they're admitting they've failed.
    I've had to ask for it for relatives - and then got the response "Oh yes, well she's certainly eligible". But it was never mentioned until I asked. And this was not academia.
    I hope more people are becoming aware of just what hospice is.