When children become their parent’s parent

Mom in 1946 after a ride from Meadows of Dan, Virginia to Gibsonton, Florida.

Three years ago, my then 83-year-old mother fell at home and fractured a vertebrae in her back.

She didn’t tell anyone about the fall and told us she strained her back.

Over the next several weeks, her “strained back” got worse. Six months after the fall, she couldn’t get out of bed. Over her protests, I called an ambulance for a trip to the emergency room where doctors discovered the broken vertebrae had fused itself to another, aggravating her advanced osteoporosis.

After six weeks in a rehab center, she returned home but her condition continued to worsen. She withdrew from friends and family, hiding behind locked doors, asking for food and supplies to be delivered and left on the porch.

Three months ago, I couldn’t get her on the phone. She had changed the locks on the house so I broke in and found her half-on, half-off the couch, unable to get up. She was emaciated and the house reeked of feces from her three dogs which could not go out.

I cleaned her and the house up and tried to talk her into going to the hospital. She talked me into letting her “sleep on it” and I left. The next day we found her on the floor where she had fallen shortly after I left. EMTs from our local rescue squad found her breathing and heartbeat erratic and her blood pressure dangerously low. They worried she might code before getting her to the nearest hospital 41 miles away.

We made it and the hospital spent several days pumping her full of nutrients, treating bed sores and other conditions. They recommended, once again, rehab.

After five weeks in a rehab center, where she fell three times while trying to get out of bed without calling for a nurse — fracturing her pelvis in one fall — the doctors ruled out her returning to home. Around-the-clock medical care is not readily available in the rural area where she lives so I exercised the medical and durable power of attorney that she had granted 20 years ago “just in case” and placed her in an assisted living facility. She fought it at first but seemed to accept it over the next month.

On August 1 — exactly one month after moving into the assisted living facility — she woke up in the middle of the night, failed to call for a nurse and tried to get up. She fell — hard — and fractured her left hip. Later that day, surgeons put her broken femur back together with a titanium rod and two screws.  After 10 days in the hospital, she returned to her third rehab center in three years.

I visit my mother every day — driving the 37 miles to the rehab center before heading for her home another 25 miles away to take care of her dogs and make sure the house is secure.  When she fell three months ago I found more than six months of unopened mail in her home and scores of unpaid bills. I assumed control of her life, paid off her bills and — with the help of my brother — set up a program to assure she is taken care of for the remainder of her life.

At 86, my mother — for the most part — is a shell of her former self. At times I see remnants of the woman who — in 1946 — climbed aboard her Harley-Davidson Knucklehead and rode 800 miles — by herself — from Meadows of Dan Virginia to Gibsonton, Florida, to meet her future in-laws. She continued to ride that bike for several years after my father died in an industrial accident three years later.

All but gone is the woman who — after my stepfather died in 1985 — decided to see the world and spent the next several years traveling that world on her own.

The frail woman I visit each day now weighs 95 pounds. Her skin tears easily from the protruding bones from advanced osteoporosis and she screams in pain from the slightest movement. Yet — when she is at her best — she still fights to regain her strength and struggles through the exercises in rehab with the hope that she can — one day — regain mobility.

As I watch her moods switch back and forth from determined fighter to dejected, declining senior, I try to keep up a strong, supportive front when with her and then turn into a sobbing mass of jelly after I leave the facility.  The past three years have taken their toll on me and those around me.

When the phone rings, I answer with a dread that it is more bad news from the rehab center. I don’t dare venture too far from the area where we live. Something could happen that requires my presence.

Friends tell me I need to let go, to reduce my daily visits to two or three times a week at most but her face usually brightens when I walk in the door of her room.  I don’t always know which person she will be when I visit. On some days I just sit and let her blast away with tirades about what a traitorous son I have become for putting her in her current “hell hole.”  On other days she thanks me for taking care of her.

She’s my mother. She took care of me for the first 17 years of my life. Now its time to do the same for her.

(NOTE TO READERS: What does this column have to do with politics? Absolutely nothing. What does it have to do with this web site? Absolutely everything. A number of readers have noticed my increasing distraction in recent months. My wife, who serves as my barometer to reality, says the distraction began three years ago when my mother fell for the first time and hit its peak in the last three months. She’s right, of course, as she always is. My focus is elsewhere and my attention span, as well as my patience, is short. My temper is short and recent events have taken its toll. I wrote this column so readers can — hopefully — understand because whatever happens in my life affects Capitol Hill Blue.)

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Overtreated to death

The doctors finally let Rosaria Vandenberg go home.

For the first time in months, she was able to touch her 2-year-old daughter who had been afraid of the tubes and machines in the hospital. The little girl climbed up onto her mother’s bed, surrounded by family photos, toys and the comfort of home. They shared one last tender moment together 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 are treated to death, spending 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 United States have a long, progressive illness such as cancer, heart failure or Alzheimer’s disease.

More than 80 percent of such patients 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 the numbers show 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. Families may push for treatment, but “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.

A stunning number of cancer patients get aggressive care in the last days of their lives, she noted. One large study of Medicare records found that nearly 12 percent of cancer patients who died in 1999 received chemo in the last two weeks of life, up from nearly 10 percent in 1993.

Guidelines from an alliance of leading cancer centers say patients whose cancer has spread should stop getting anti-cancer medicine if sequential attempts with three different drugs fail to shrink their tumors. Yet according to IntrinsiQ, a cancer data analysis 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 for 12 percent of those with lung cancer. The analysis is based on more than 60,000 cancer patients.

Often, overtreating fatal illnesses happens because patients don’t want to give up.

Saideh Browne said her mother, Khadija Akmal-Lamb, wanted to fight her advanced ovarian cancer even after learning it had spread to her liver. The 55-year-old Kansas City, Mo., woman had chemo until two weeks before she died last August.

“She kept throwing up, she couldn’t go to the bathroom,” and her body ached, Browne said. The doctors urged hospice care and said, “your mom was stubborn,” Browne recalled. “She wanted her chemo and she wanted to live.”

Browne, who lives in New York, formed a women’s cancer foundation in her mother’s honor. She said she would encourage dying cancer patients to choose comfort care over needless medicine that prolongs suffering.

It’s easier said than done.

The American way is “never giving up, hoping for a miracle,” said Dr. Porter Storey, a former hospice medical director who is executive vice president of the hospice group that Morrison heads.

“We use sports metaphors and war metaphors all the time. We talk about never giving up and it’s not over till the fat lady sings …. glorifying people who fought to their very last breath,” when instead we should be helping them accept death as an inevitable part of life, he said.

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

“It’s amazing how little benefit those studies show,” Storey said, referring to research on the new drugs.

Dan Waeger tried just about all of them. A nonsmoker, he was diagnosed with lung cancer at age 22, and pursued treatment after treatment before dying nearly four years later, in March 2009.

“He decided if there were odds to be beat, he was going to beat the odds,” said his boss, Ellen Stovall, then-president of the National Coalition for Cancer Survivorship, where Waeger worked as a fundraiser and development manager.

“He received just about every experimental new drug for lung cancer that I’m aware of in his last two years of life. He would get a treatment on a Friday afternoon, be sick all weekend and come to work on Monday,” she recalled.

“He had these horrific rashes. He would get these horrible coughs that were not just the lung cancer. The treatments were making him cough up blood, just horrific side effects — vertigo, numbness, tingling in his hands and feet. He suffered.”

Waeger’s fiancee, Meg Rodgers, said they worried about exceeding the lifetime limits on his insurance, since the care was so expensive.

“I think every time he got a treatment, it was $10,000,” though he paid only a $10 copay, she said.

Yet it was clearly worth any price to him — he died a week before they were to be married, after receiving home hospice care for only two weeks.

“I honestly believe he would have done anything he could to live one more day,” Rodgers said.

Some health policy groups say cancer patients, as well as people with failing hearts or terminal dementia, should get better end-of-life counseling. Last year, a plan that would have let Medicare pay for doctors to talk about things like living wills was labeled “death panels” and was dropped.

Ultimately, how patients and their families make the journey is a matter of personal choice — and there are resources to help them, Stovall said.

“I’ve heard a lot of people over the years say what they would do if they had cancer until it is them. And then they will cling to even the smallest glimmer that something will help,” she said.

“Cancer that can’t be cured is often called daunting but not hopeless. So that’s what patients hear. Hope is the last thing to go. People don’t give that up easily.”

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AP Medical Writer Lindsey Tanner in Chicago contributed to this story.

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Online:

State advance directives: http://www.caringinfo.org/PlanningAhead.htm

Physician’s orders: http://www.ohsu.edu/polst/

Respecting Choices: http://respectingchoices.org

Copyright © 2010 The Associated Press

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Health care law will add to doctor shortage

Health care provider in Miami (AFP)

Better beat the crowd and find a doctor.

Primary care physicians already are in short supply in parts of the country, and the landmark health overhaul that will bring them millions more newly insured patients in the next few years promises extra strain.

The new law goes beyond offering coverage to the uninsured, with steps to improve the quality of care for the average person and help keep us well instead of today’s seek-care-after-you’re-sick culture. To benefit, you’ll need a regular health provider.

Yet recently published reports predict a shortfall of roughly 40,000 primary care doctors over the next decade, a field losing out to the better pay, better hours and higher profile of many other specialties. Provisions in the new law aim to start reversing that tide, from bonus payments for certain physicians to expanded community health centers that will pick up some of the slack.

A growing movement to change how primary care is practiced may do more to help with the influx. Instead of the traditional 10-minutes-with-the-doc-style office, a “medical home” would enhance access with a doctor-led team of nurses, physician assistants and disease educators working together; these teams could see more people while giving extra attention to those who need it most.

“A lot of things can be done in the team fashion where you don’t need the patient to see the physician every three months,” says Dr. Sam Jones of Fairfax Family Practice Centers, a large Virginia group of 10 primary care offices outside the nation’s capital that is morphing into this medical home model.

“We think it’s the right thing to do. We were going to do this regardless of what happens with health care reform,” adds Jones. His office, in affiliation with Virginia Commonwealth University, also provides hands-on residency training to beginning doctors in this kind of care.

Only 30 percent of U.S. doctors practice primary care. The government says 65 million people live in areas designated as having a shortage of primary care physicians, places already in need of more than 16,600 additional providers to fill the gaps. Among other steps, the new law provides a 10 percent bonus from Medicare for primary care doctors serving in those areas.

Massachusetts offers a snapshot of how giving more people insurance naturally drives demand. The Massachusetts Medical Society last fall reported just over half of internists and 40 percent of family and general practitioners weren’t accepting new patients, an increase in recent years as the state implemented nearly universal coverage.

Nationally, the big surge for primary care won’t start until 2014, when the bulk of the 32 million uninsured starts coming online.

Sooner will come some catch-up demand, as group health plans and Medicare end co-payments for important preventive care measures such as colon cancer screenings or cholesterol checks. Even the insured increasingly put off such steps as the economy worsened, meaning doctors may see a blip in diagnoses as those people return, says Dr. Lori Heim, president of the American Academy of Family Physicians.

That’s one of the first steps in the new law’s emphasis on wellness care over sickness care, with policies that encourage trying programs like the “patient-centered medical home” that Jones’ practice is putting in place in suburban Virginia.

It’s not easy to switch from the reactive — “George, it’s your first visit to check your diabetes in two years!” — to the proactive approach of getting George in on time.

First Jones’ practice adopted an electronic medical record, to keep patients’ information up to date and help them coordinate necessary specialist visits while decreasing redundancies.

Then came a patient registry so the team can start tracking who needs what testing or follow-up and make sure patients get it on time.

Rolling out next is a custom Web-based service named My Preventive Care that lets the practice’s patients link to their electronic medical record, answer some lifestyle and risk questions, and receive an individually tailored list of wellness steps to consider.

Say Don’s cholesterol test, scheduled after his yearly checkup, came back borderline high. That new lab result will show up, with discussion of diet, exercise and medication options to lower it in light of his other risk factors. He might try some on his own, or call up the doctor — who also gets an electronic copy — for a more in-depth discussion.

“It prevents things from falling through the cracks,” says Dr. Alex Krist, a Fairfax Family Practice physician and VCU associate professor who designed and tested the computer program with a $1.2 million federal grant. In a small study of test-users, preventive services such as cancer screenings and cholesterol checks increased between 3 percent and 12 percent.

Pilot tests of medical homes, through the American Academy of Family Physicians and Medicare, are under way around the country. Initial results suggest they can improve quality, but it’s not clear if they save money.

Primary care can’t do it alone. Broader changes are needed to decrease the financial incentives that spur too much specialist-driven care, says Dr. David Goodman of the Dartmouth Institute for Health Policy and Clinical Practice.

“What we need is not just a medical home, but a medical neighborhood.”

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EDITOR’S NOTE — Lauran Neergaard covers health and medical issues for The Associated Press in Washington.

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On the Net:

American Academy of Family Physicians: http://www.aafp.org

Fairfax Family Practice Centers: http://www.fairfaxfamilypractice.com

Dartmouth Institute for Health Policy and Clinical Practice: http://tdi.dartmouth.edu/

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