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.

Monday, November 15, 2010

Waiting for the Phone to Ring

Dan pointed to his legs and said, "How come my ankles are so swollen? I can barely get my shoes on."

We're on a trip together with our wives, far away from usual medical care, so I had to do some quick thinking, which isn't necessarily easy to do being retired. "Dan, the most common cause is just varicose veins and having your feet down, plus not doing much walking. We all get some leg swelling. Just wear some support stockings."

In the back of my mind, I was a little worried about blood clots which can occur in this situation, but since both legs were equally involved I didn't think that was likely. What I didn't think of was kidney failure. Even after we returned home, it wasn't until some blood tests were run several weeks later that Dan called me, "Jim, my numbers are off the chart and I have only about 17% of kidney function left."

Dan's kidney doctors couldn't really pinpoint the cause of his small shrunken kidneys, except that it looked like they had begun to fail years earlier, perhaps even from a childhood illness. He was prescribed diet and medications, but the kidney function continued to decline. Dan, now 72 and his wife Sarah began to have long discussions with the personnel at the kidney center about his options. Sarah, a retired RN, pitched in with knowledge and support but there were so many unknowns.

Finally the day arrived when Dan needed to decide about dialysis - hemodialysis versus peritoneal dialysis. But would that be permanent or could he qualify for a kidney transplant? From the start he was told that he was a little old, but he might qualify for a kidney transplant if the rest of his health was excellent . To ensure this, he had multiple prostate biopsies to rule out cancer, a heart catheterization, lung testing, and a full body CT scan. All proved OK, so he was entered on to the waiting list for kidney transplants. The kidney center staff explained to him that over 80,000 people in the USA are waiting for a life-saving kidney transplant, but sadly about a third of these die while waiting.

In the meantime, Dan opted to begin peritoneal dialysis at home. A vascular surgeon carefully and expertly placed a plastic tube with multiple perforations into the abdominal cavity leaving one end protruding from the abdominal wall. A saline type solution (several liters) would be allowed to flow into his abdominal cavity, sit a few hours, then drain out. He developed a schedule with an automatic pump that would allow a big portion of this to occur over night. Although this tethered him down, he was even able to travel to Hawaii for a few weeks since the same support and service existed there.

But the wait for a kidney had begun. The genetic and blood type testing were now known and he was on the national list. One day Dan heard from a well meaning friend that he could fly to a country like India and receive a transplant. Dan saw that there were both ethical and medical issues around this "option." He had heard of poor people being paid for organs and knew that that was illegal in the United States and most countries. The medical concerns about quality and care were secondary. The option of going abroad for a transplant was immediately put aside because Dan simply felt it was immoral.

Two friends offered to be live donors. This floored Dan. Would he have done the same? The friends were evaluated but didn't have the right tissue match or blood type. So the wait continued. Dan and Sarah's strong faith and family relationships helped, but it had been a year now. One night at about 14 months they got a phone call to be ready, there was a possible donor. They waited several hours, but when the donor's organ was removed the kidney was in poor shape and not acceptable for transplant. The wait went on. Dan was discouraged, he felt OK but not great. The legs were beginning to have numbness despite vitamin therapy. The emotional drain of waiting was wearing. But Dan said, "At least we have hope!"

Finally the call came. Dan relayed it to me, "We're heading into the hospital. A kidney is coming from somewhere, and I may never find out where or who, but I'm so grateful that they've given me a chance." The operation took place that night and went well. He was out of the hospital in a few days, but loaded up with protocols to prevent rejection.

Dan's post operative course was tough, given that he had two severe infections with very pesky viruses, CMV and BK. These nasty bugs bedevil transplant patients and require high doses of pretty toxic drugs. Dan and Sarah hit a low point here. All this effort and now feeling so sick. After nearly six weeks, the viruses finally cleared and haven't recurred. They dodged another bullet.

Recently Dan got a letter from the organ donation coordination team. Would he like to write an anonymous letter to his donor's family telling them of his experience and what it means to him. Dan is trying, but finding it very hard to express the deep feeling of gratitude and the surrounding emotions. But I'm sure he will write the letter - but not without a struggle.

Comment: Dan and I recently signed up to be volunteer advocates for organ transplantation and we were invited to an appreciation dinner. I'm a recipient of two partial corneal transplants so it's also a personal journey for me. At our table was a heart transplant recipient and his wife, an oncology nurse. Across from us were a husband and wife, I'll call Joe and Sue. Sue was a PhD education consultant who traveled all over the world. Joe was a Microsoft programmer who was just four weeks post surgery. He was a volunteer anonymous kidney donor. Somewhere he had read an article about the need for kidneys, and he felt at age 38, "Why not be a donor?" He had no idea who the recipient might be, but said some day he would like to meet him or her. Sue beamed as Joe talked. She supported Joe, but said it wasn't something she was prepared to do herself. She felt both worry and admiration for her husband.

Dan didn't know quite what to say. He looked at Joe and said, "You know, I'm a kidney transplant recipient. It's a great thing you've done."

There were presentations that night from various members of the organ recovery and transplant teams. The CEO spoke about their mission and focus, then the various members of the team outlined their roles. All gave their thanks to the volunteers. On the way out, a man remarked to me, "You know this is the first gathering I've ever been to where every last person was selfless." If you want more information or to sign up as a donor please contact Donate Life America.

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