Needless Suffering

END-OF-LIFE TREATMENT

Last-ditch efforts can drag out suffering

By Marilynn Marchione                                                                                                                                                               ASSOCIATED PRESS

The doctors finally let Rosaria Vandenberg go home.    For the first time in months, she was able to touch the 2-year-old who had been afraid of the tubes and machines in the hospital. She climbed onto her mother’s bed, surrounded by photos, toys and the comfort of home. They had a last tender moment before Vandenberg slipped back into unconsciousness.    Vandenberg, 32, died the next day.

That precious time at home could have come sooner if the family had known how to talk about alternatives to aggressive treatment, said Vandenberg’s sister-in-law, Alexandra Drane.    Instead, Vandenberg, a pharmacist in Franklin, Mass., had endured two surgeries, chemotherapy and radiation for an incurable brain tumor before she died in July 2004. “We would have had a very different discussion about that second surgery and chemotherapy. We might have just taken her home and stuck her in a beautiful chair outside under the sun and let her gorgeous little daughter play around her — not just torture her” in the hospital, Drane said.

Americans increasingly spend more time in hospitals in their final days, trying last-ditch treatments that often buy only weeks of time and racking up bills that have made medical care a leading cause of bankruptcies. More than 80 percent of people who die in the U.S. have a long, progressive illness such as cancer, heart failure or Alzheimer’s. More than 80 percent of them say they want to avoid hospitalization and intensive care when they are dying, according to the Dartmouth Atlas Project, which tracks health-care trends.    Yet that’s not what is happening:

• The average time spent in hospice and palliative care, which stresses comfort and quality of life once an illness is incurable, is falling because people are starting it too late. In 2008, one-third of people who received hospice care had it for a week or less, says the National Hospice and Palliative Care Organization.
• Hospitalizations during the last six months of life are rising: from 1,302 per 1,000 Medicare recipients in 1996 to 1,441 in 2005, Dartmouth reports. Treating chronic illness in the last two years of life gobbles up nearly one-third of all Medicare dollars.
  

“People are actually now sicker as they die,” and some find that treatments become a greater burden than the illness was, said Dr. Ira Byock, director of palliative care at Dartmouth-Hitchcock Medical Center. “There are worse things than having someone you love die,” he said.

Gail Sheehy, author of the Passages books, learned that as her husband, New York magazine founder Clay Felker, spent 17 years fighting various cancers. On New Year’s Day 2007, they waited eight hours in an emergency   room for yet another CT scan until Felker looked at her and said, “No more hospitals.”    “I just put a cover over him and wheeled him out of there with needles still in his arms,” Sheehy said.    Then she called Dr. R. Sean Morrison, president of the American Academy of Hospice and Palliative Medicine and a doctor at Mount Sinai School of Medicine in New York.    “Nobody had really sat down with them about what his choices are and what the options were,” said Morrison, who became his doctor.      About a year later, Felker withdrew his own feeding tube, and “it enabled us to go out and have a wonderful evening at a jazz club two nights before he died” in July 2008, Sheehy said.

Doctors can’t predict how soon a patient will die, but they usually know when an illness has become incurable. Even then, many of them practice “exhaustion medicine” — treating until there are no more options left to try, said Dr. Martha Twaddle, chief medical officer of Midwest Palliative & Hospice Care Center in suburban Chicago.

Guidelines from leading cancer centers say patients whose cancer has spread should stop getting anticancer medicine if sequential attempts with three different drugs fail to shrink their tumors. Yet according to IntrinsiQ, a cancer-dataanalysis company, almost 20 percent of patients with colorectal cancer that has spread are on at least their fourth chemotherapy drug. The same goes for roughly 12 percent of patients with metastatic breast cancer and 12 percent of those with lung cancer. The analysis is based on more than 60,000 patients.    The American way is “never giving up, hoping for a miracle,” said Dr. Porter Storey, a former hospice medical director. Instead, he said, we should help patients accept death as part of life.

This is especially true, Storey said, when deciding whether to try one of the newer, very expensive cancer drugs such as Avastin, Erbitux or Tarceva. Some are touted as “improving survival by 30 or 50 percent” when that actually might mean living three weeks instead of two.

(Comment:  Anyone who has been through the loss of a dearly-loved family member, knows full-well what this article is about!  It is by varying degrees, difficult to excruciating exacting great tolls upon those of us left behind.

When my husband was ill with brain cancer, he tried with all he had in him to go through the chemotherapy, but suffered so, he found it preferable to just let it be and go as quietly as possible and with whatever serenity of mind he could muster.  Near the end,he wanted to go to the VA hospital which my son and I enabled.  Because I wasn’t with him when he died, I was left with remorse and emotional pain.  Consequently, I grieved more than two years.   That was my own pain however, nothing to do with his end story/choice.  I could barely accept that my world no longer would have Marty in it.

In my mother’s passing different circumstances were in play.  For 20 – 30 years, she had had DNR orders with her doctors.  She had enjoyed a wonderful life – done almost everything she wanted to do, leaving few stones unturned.  She had finally been in poor health and would welcome the end as a release from pain.  I demanded all heroics be stopped when I arrived at the hospital over the protests of the medical staff surrounding her when I walked in.  Was intimidated with the information that my actions would certainly hasten her death. That her system was shutting down.  When my eyes locked onto hers, I could see her tension dissipate.  We were rolled up to another floor to a private room and I sat with mother for about six hours, holding her hand and intoning the name of the lord and my love for her as my eyes held her face.  Her loving nature struggled to tell me how much she loved me – - but I knew that and she knew that I knew.   Her labor to gain air for her lungs was  hard, but as we continued, her breathing evened out and the serenity of this time transported us both through to the end of her journey.    She was peaceful, loved, safe and with the one person she loved more than any other.   I went to find hospital personnel to advise of her passing.   I missed her enormously, but I did not grieve.  It was a beautiful passing and we were both “at peace” with it.

It is fairly important that those decisions made at the end of a hard medical siege be for the benefit of the one who is ill and suffering, not out of any emotional “needs” of our own.  We all must learn, death is a part of life  Jan)

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