Monday, June 15, 2009

Why My Dying Sister Needed Less Health Care

My older sister had gold plated health care in the last year of her life. She died in March 2006 at age 56, having been diagnosed with Stage IV melanoma the previous May. Because my sister had retired from Reno's city government with full health benefits, any expense was subject to approval by the same people who likely were covered under the same system. No way would they would turn down any potentally beneficial treatment they might someday themselves want.

While the clamor now is to get more health care for more people, my sister's case illustrates what can go wrong when there are no brakes on health care expenses.

From the start, my sister's case was dire. During a self-exam, she noticed a suspicious lesion on the top of her head, which she reported to her skin doctor. A biopsy was done almost immediately, just before my sister came to a celebration of my mother's 89th birthday.

She got the phone call from her dermatologist while still in my mother's Portland house: "Come home - come by my office, don't stop to unpack."

The initial prognosis was grim - metastasized melanoma. My sister Fran was divorced with young adult children so she asked that our other sister Barbara and I oversee her health care. Fran's Reno-based doctor immediately said she was out of her depth and that we should consult specialists.

We went to San Francisco and met with a group of experts there who poked and prodded, then met for a few hours, and gave us the word that same day. Stage IV melanoma, no primary site found. By this time, small cancerous dots had started to appear all over Fran's body. To the doctors, it was fascinating. They were intrigued and recommended treatment in the Bay area.

We found out more about the treatment, which basically involved bringing my sister to the brink of death under controlled conditions in an ICU ward, with the hope that her immune system would kick in to fight back the cancer. Since my other sister and I are Seattle based, we asked if the treatment could be done in our city, where we could better look after Fran.

The chances of success were estimated at 7-15%. I couldn't find any instance of where someone whose cancer had spread as far and fast as my sister's had had a favorable result. There were world-class melanoma experts in the Seattle area, and they agreed to take on my sister's case.

From the start, I told Fran that I would advocate on her behalf and ultimately do what she wanted me to do. Because our father also had severe melanoma in his 50s (and then lived into his 90s), the type of cancer wasn't a surprise. Among all of my dad's kids (8 total), Fran was the one determined to get as much sun as she liked. She also smoked, hated to exercise, and loved fatty foods. And she wanted a doctor to cure her. She also specifically didn't want to do any research on her condition herself.

At all times, we asked the doctors involved to make decisions and recommendations based on what was appropriate for my sister, not for the purposes of research to better understand melanoma. Fran was hospitalized twice for a week to undergo the procedures that would bring her to the brink of death, each stay in a special intensive care ward. The treatment was grueling, but my sister hung on. Ultimately, the treatment was stopped because my sister's naturally low blood pressure sank too far. For a very brief period of time, the lesions' growth appeared to stall.
Almost immediately, though, the lesions contined to spread, and I got an email while traveling on business that they had spread into her brain.

When we met with the doctor a couple of days later, I asked him in Fran's presence to tell us how long she likely had to live. He turned to her, and asked "Do you want to hear this?" to which she said an emphatic "Yes." He then said that based on what he'd seen in other patients, my sister had no more than four months to live. Then he recommended that Fran see another set of doctors specifically about the lesions in her head. She would wear a metal head brace, with screws into her scalp, in order to stay immobilized while they lasered the lesions down to size.

I questioned the doctor about whether the new recommendation made sense given that the cancer was aggressively spreading everywhere else. From a commonsense perspective, I was trying to figure out if death by brain lesion was worse than death through some other type of lesion. The doctor recommended it, and Fran wanted to do anything the doctor said might help, so we went ahead. All the time, I was wondering why we should pursue this treatment, when nothing suggested it would actually prolong her life in a meaningful way.

When we went in for the laser brain surgery, Fran had an entire team of health care specialists assigned very specifically to her with no other laser patients in sight. Meanwhile, the waiting room at Harborview Hospital was filled to overflowing with patients seeking care for more mundane concerns. I asked what the cost was for the treatment Fran was getting on that particular day, and was told that it was in five figures. They treated her beautifully...imagine the nicest, least crowded dentist's office you've ever seen. The staff invited her back - and said they could continue treating her brain lesions for as long as she wanted. Apparently, as a result of their effort four of the seven lesions were now smaller. This seemed like a huge victory for them - and apparently, was in line with their expectations. My sister's forehead was still bleeding from where they'd anchored the gear onto her head and I was left wondering why anyone thought this was a good idea.

I suggested that my sister go home, enjoy the holidays with her three young adult children - one of whom is severely disabled, and we could reassess. By early January, the cancer was continuing to spread aggressively. We made plans to have everyone in the family visit Fran in late January down in Reno. We had a lovely time toasting Fran at an Irish pub in the midst of her friends and family. (True Irish will drink for any occasion). Her hair was thinner, but otherwise she looked like our Fran. At the party, her dermatologist pulled Barbara and me aside, and said that Fran should immediately be under hospice care.

Barbara visited Fran a couple of weeks later, and told me to get there as soon as I could. I was working full-time in a demanding job, but immediately asked for a week off. Fran went downhill fast - I talked to her briefly, just after she collapsed on the day before I was to fly down. We each said I love you, and I said I'd be down later that day. Her last words to me were "it's happening so fast." By the time I got there later that night, Fran was uncommunicative. For the next six days, I stayed with her 23-7 (my husband flew down with me, stayed in a hotel room, and would take me out to breakfast each day). The hospice people were wonderful and on the seventh day, Frannie died.

What went right and wrong in Fran's care that carries a broader implications for health care reform now being discussed?

1) From the outset, Fran's case was likely too far advanced for anyone to cure. In years since, I've done a lot of research. No one with a case as broadly metastacized as Fran has ever been cured. That seems like an important piece of data, one that none of us in the family could have known, but that the experts should have.

2) The brain lesion surgery was a farce. The doctors there were only concerned about her head. The fact that she might die on the table from where the melanoma was attacking other organs held no interest for them. It was just bizarre to be around doctors who could so clearly treat a "head" with no concern, or even interest in the body that supported it. At tens of thousands a pop.

3) No one in the entire process was looking out for "the system." And by that, I mean, looking out for whether the dollars being spent for my sister's care should be traded off against other health care needs. I get the sense that if we'd asked for it, Fran could have shown up daily to get her brain lesions lasered. I actually got marketing materials in the mail from the hospital asking us to recommend the brain lesion treatment to other "friends."

4) Doctors are ill equipped to tell patients when they should stop seeking treatment. The reason I asked the doctor point-blank how long my sister had to live is because she needed to get her affairs in order for the benefit of her disabled son. Without the grim news, I know she wouldn't have done it. I could feel the doctors' discomfort with such a direct question. Knowing that time was so short also enabled the rest of our family to rally and gather together to say goodbye while Fran could still enjoy it. (And she did!)

5) The hospice people are wonderful. They did a beautiful, even loving job of taking care of Fran, and answering questions about the dying process.

I loved my sister. But she also got too much of the wrong type of care in her final year of life. Ultimately, it would have made more sense for her to have less intensive physical care, and more help dealing with the anxieties that surround the dying process. A huge aspect of this is cultural - few people are given the message that it's OK not to fight. More recently, when following the journals of friends facing terminal illness, I start to get angry with the people who insist that it's every patient's responsibility to "fight back." Sometimes, the kindler, gentler, more humane option is to acknowledge that death is coming and surround one's self with family and friends to enjoy the time that's left.

The doctors who treated my sister were all nice individuals. But they and doctors like them are going to bankrupt our system by enabling and encouraging people with no reasonable hope for a cure or even for reasonable extension of life under quality circumstances to pursue hugely expensive treaments. When someone is facing a terminal illness, someone has to ask: "Does this treatment make sense given the success rates we've seen in other patients?" We've forced the insurance companies into that role because no one else in the medical community will do it.

When someone doesn't ask the tough questions, the patient doesn't necessarily get better care. Sometimes they just get hugely expensive care with the same dismal end result. (By the way, I have yet to refer any friends for brain lesion surgery.)