Americans are treated, and overtreated, to death

By MARILYNN MARCHIONE (AP) – 1 day ago

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.”

___

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

___

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. All rights reserved.

The hypervigilant caregiver becomes exhausted, but can’t sleep. Chronic stress turns on a steady flow of cortisol. Too much cortisol shuts down the immune-cell response, leaving one less able to ward off infection. Many recent clinical studies show that long-term caregivers are at high risk for sleep deprivation, immune-system deficiency, depression, chronic anxiety, loss of concentration, and premature death.

Fantastic article regarding caregiver stress.

Of the ones who have run into the marathon mode of care, how many are driving? The most often heard comment is “I realized I didn’t know where I was or how I got there”.

This is the care giver who has stayed up the night before, and many nights before that, to do nothing but worry and try to bring some sort of normalcy to their life and the life of their loved one.

We are on the same road – literally and figuratively – with these people everyday and need to find ways to prevent premature death in the person providing care.

I see hospice as the great pain and symptom manager as well as the counselors for emotional and spiritual needs. Sometimes it may be the role of the volunteer that may be the most overlooked and the most needed for our families.

A well trained volunteer can be the person who provides the respite for the care giver and maybe give the gift of time. The other need is for some sort of coverage for private duty services. I am seeing more of a need for the “sitter” type services for care giver stress to be relieved.

I think the company who comes up with a great private duty package for caregivers will be a win for all.

I am not an expert on resources, but here are some thoughts:

VA Aid and Attendance – financial assistance
Hospice respite care (up to 5 days in a contracted facility)
Community care programs – usually a Medicaid service
Hospice volunteers – temporary relief

While most of my posts relay information gathered online, this problem deserves some thinking?

What are the resources for caregivers you can post here? Please take a moment to respond. The person needing our ideas may be driving somewhere right now in a non-alert state and it could be us or our family members who are on the road with them when the accident occurs because the caregiver is so drained and tired.

Please post your resources and let’s share some hope with others.

CJ Gunther for The New York Times Hospital delirium affects about a third of patients over 70.

This week, Pam Belluck reported in The Times on the risk that elderly patients may become confused and delirious while in the hospital. Here she offers advice on how to prepare when an elderly patient is headed to surgery or a hospital stay.

About a third of patients over age 70 experience hospital delirium, and the consequences can be serious, delaying a patient’s recovery and even leading to placement in a nursing home. Elderly patients who experience delirium are also more likely to develop dementia later on, and more likely to die sooner than patients who do not become delirious.

Many readers have asked me what family members can do to help lower an elderly patient’s risk. To find out, I turned to three experts –  Dr. Margaret Pisani at the Yale University School of Medicine, Dr. Wes Ely at Vanderbilt University School of Medicine and Dr. Sharon Inouye at Harvard Medical School. Based on their advice, here are six questions family members should ask to lower an elderly patient’s risk for hospital delirium.

1. Do the nurses and doctors routinely screen for delirium or identify high-risk patients?

Older and younger patients who develop severe infections or heart, liver or kidney problems are at higher risk for delirium. But about 75 percent of delirium cases are missed when the hospital or its intensive care unit is not actively screening for it. While delirium can cause patients to become aggressive, disruptive or incoherent, it can also manifest itself in much less obvious ways, making a patient seem withdrawn or disconnected. Even with regular screening, family members are often the first to notice subtle changes. If you detect new signs that could indicate delirium — like  confusion, memory problems or personality changes — it is important to discuss these with the nurses or physicians as soon as you can.

2. How does the hospital deal with agitation or delirium in patients if it develops?

The longer the duration of the delirium, the greater the chances of poor consequences for the patient, so it should be addressed quickly. Experts say hospitals can treat delirium by helping patients sleep, making sure patients are hydrated, allowing family members to stay at patients’ bedsides to help them become reoriented, and getting patients up and walking when it is safe to do so. Family members should also inquire about hospital policies involving restraints for confused patients. Removing restraints is often recommended because they can cause patients to feel paranoid or trapped. Some hospitals use anti-psychotic medications like haloperidol, but some experts caution that these should be used in moderation and are not yet proven to work.

3. What does the hospital do to keep patients from becoming disoriented?

Situations like being without one’s eyeglasses, being in a darkened room and being unaware of the day and time can trigger delirium. Hospital rooms should have clocks, calendars and adequate light, and nurses and doctors should ensure that patients have their glasses, hearing aids and dentures. Family members should make sure the hospital staff knows if the patient needs these items. The family can also bring a few familiar objects from home to help a patient stay oriented. Things like family photos, a favorite blanket for the bed, a beloved book or relaxation tapes can be comforting for all patients. Family members can also help by speaking in a calm, reassuring tone of voice and reminding the patient where he or she is and why.  Massage can be soothing for some patients, and if it is all right with the medical staff, family members can walk with the patient in the hallways. Families should limit the length of visits and number of visitors to prevent patients from feeling overwhelmed, but they should also try to make sure the patient is rarely alone. If the patient experiences an acute episode of delirium, relatives should try to arrange shifts so someone can be present around the clock.

4. What policies are in place to make sure patients get adequate sleep?

Family members should find out if patients are able to sleep through the night or if they will be awakened for medical tests. Find out how the hospital controls noise and whether it offers any nondrug measures like back rubs or warm tea to promote sleep.

5. If my family member needs a urinary catheter or other bedside interventions, how does the hospital decide when to remove them?

A common procedure like a catheter insertion can spur anxiety in frail, vulnerable patients. Experts say it’s important to remove catheters, intravenous lines and other equipment whenever possible because they can make patients feel trapped, leading to delirium.

6. Will the physicians and pharmacy staff review my family member’s medications to identify medications that increase delirium risk?

Bring to the hospital a complete list of all medications and dose instructions, as well as over-the-counter medicines. It may help to bring the medication bottles as well. Prepare a “medical information sheet” listing all allergies, names and phone numbers of physicians, the name of the patient’s usual pharmacy and all known medical conditions. Also, be sure all pertinent medical records have been forwarded to the doctors who will be caring for the patient.

Set up local Congressional meetings for August!

Now is the time to put in your request letters to meet with your Members of Congress when they are home in August. Use the customizable templates in our In-District Action Kit to request some face time with your Representatives.

You can invite them to sit in on an IDT, meet with a patient and their family (of course, subject to patient privacy concerns), meet your board or visit an inpatient unit. Get creative and get them to your local hospice. It’s so important that we cultivate Congressional Champions by giving them the hands-on experience of hospice in their local communities.

In the coming weeks, we’ll be sending you more information to help you execute successful Congressional meetings from home. But, get the ball rolling now by requesting the meetings. Don’t wait – their calendars fill up fast!

“The support I received with my mother was invaluable,” Nichols said. “I was alone taking care of her, and I really depended on them.”

Nichols volunteers at both the VistaCare office and with patients in assisted living facilities. She sits and talks with patients who do not have family, reads the Bible to them or runs errands for them.

“It is not sad — it is uplifting,” Nichols said. “I am giving back to someone, a lot of times to people that don’t have family or the caretakers.”

VistaCare, which serves a 100-mile radius around Warner Robins, requires a background check, a tuberculosis test and training before a person can volunteer.

Nanci Simpson, manager of Volunteer Services at VistaCare, said there is a large range of duties for volunteers.

Some go into assisted living facilities and play the piano for residents or play bingo. Others go into homes and provide companionship for the hospice patient or relief for the primary caregiver.

Many times people think of hospice for people with a cancer diagnosis, but many of the patients have dementia or are bed bound, Simpson said.

They are patients who cannot be left alone for any length of time.

“Sometimes it is more about doing for the caregiver,” Simpson said. “The caregiver needs a chance to get out of the house, run a few errands, get their hair done. Maybe they don’t have any family around the area that can help out.

“A volunteer can give them those few minutes away and help them renew themselves.”

Volunteer time also is mandated by Medicaid, according to Simpson, who said 5 percent of patient care hours must be volunteer time.

In cities with medical colleges or nursing programs, students often volunteer as part of their education program requirements for community service.

Volunteering with VistaCare is not always easy, but Simpson said the best thing is to think of the people being helped.

“You will change the last days of someone’s life,” she said. “You are helping them and their families with an end-of-life experience. It is something that they always appreciate and never forget.”

VistaCare also has opportunities for volunteers in the office to assist with administrative tasks. To become a volunteer, call VistaCare at 953-1016.

“I highly recommend it to retired people looking to give back,” Nichols said.

Contact Alline Kent at 396-2467 or allinekent@cox.net.

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Put the word “cuts” and “Medicare” in the same sentence, and what do you get?

A bunch of anxious, angry older folks, who think dark thoughts and give voice to worries that don’t occur to those who haven’t walked a mile of hospital corridors in their shoes.

They’re people like Pat Gee, who was sitting in her husband’s hospital room late last year, watching TV cover the sausage making called politics that ultimately spat out a health-care overhaul.

Les Gee, 73, a retired Boeing worker from Federal Way, had just undergone a kidney transplant. Pat was worrying about paying for his expensive anti-rejection drugs, and listening as a Democratic congressman intoned about how everyone should get the same health benefits.

“Just who does he think will pay for this?” Pat Gee demanded.

That uncertainty — and worry — among seniors like Gee is understandable. Overhauling Medicare, the federal insurance plan that pays the medical bills of some 45 million Americans, most of them seniors, is a key part of remaking the national health-care system.

To provide coverage for millions of uninsured Americans of all ages, the law calls for squeezing Medicare to come up with more than half the $938 billion estimated cost of the new national health plan. Paring down Medicare is also necessary to keep the massive and financially troubled program afloat for the long haul.

While it’s hard to predict what that will mean for individual seniors, it’s likely that Les and Pat Gee will reap some benefits.

Many key aspects of Medicare’s future are still in play politically, with rules and formulas still being hashed out, including how much doctors ultimately will be reimbursed for treating Medicare patients.

Even so, some gains — and some losses — are clearly spelled out in the law:

• For some 35 million Americans now on traditional Medicare, such as the Gees, basic benefits will be protected and even increased: Beginning next year, co-pays and deductibles will be lifted for many preventive services and a yearly physical.

• For those who have opted instead for private-market Medicare Advantage plans, which offer additional benefits and often require higher premiums, benefits may shrink and premiums rise.

• For those who have “Part D” prescription-drug coverage, there’s mostly good news. A coverage gap that has hit many seniors — including the Gees — will gradually disappear, and in the meantime, they’ll get discounts on brand-name and expensive biologic drugs. At the same time, though, affluent seniors, for the first time, will pay more for their drug plans.

• The sprawling new law shifts the way care is delivered to seniors on Medicare, rewarding better care instead of more of it and giving some primary-care doctors more money.

For seniors — and those coming up fast on 65 — a big issue still in play politically and financially is whether there will be a doctor to see them when they need one. Doctors are already crabby that Medicare typically pays them less than private insurers do, and Congress could shrink reimbursements even more as it tries to contain health-care costs in general.

Meanwhile, many seniors, pinched by the economy, worry about having to pay more out of pocket.

“These are the forces that are causing anger and discomfort in Medicare beneficiaries today,” says Dr. James Lee, an internist at The Everett Clinic, which has about 290,000 patients, including 38,000 on Medicare.

The way it is now

By 2030, Medicare, which began in 1965, is expected to insure some 79 million seniors.

Many with coverage now — whether they’re like Pat Gee, 71, who decries “socialized” medicine, or Bettie Dunbar, 90, who believes “poor people should have health care; everyone should have health care” — are quick to say they want the government to keep its hands off their Medicare.

“We’re so well taken care of now, I don’t want it to change,” explains Marie Heberling, 82, who, like Dunbar, is a Medicare Advantage plan patient at Group Health Cooperative’s Burien clinic.

But for the majority of seniors, who are insured by traditional, fee-for-service Medicare, change has already been happening. For years, primary-care doctors and clinics in Washington have been quietly closing their doors to new patients on regular Medicare, saying they lose money in treating them.

By contrast, many doctors and clinics are happy to take patients on Medicare Advantage plans. To encourage development of these insurer-run, private-market plans, which ideally would compete with each other, the government in 2003 began funding them better than traditional Medicare plans — about 9 to 14 percent more, on average.

Of the 900,000 seniors in Washington insured by Medicare, about 200,000 are in Medicare Advantage plans, says Ingrid McDonald, advocacy director of AARP Washington. Locally and nationally, the percentage opting for Advantage plans has grown fast.

Increasingly, clinics are urging — even requiring — senior patients to sign up for Advantage plans.

The Everett Clinic, for example, doesn’t take new Medicare patients unless they’re on an Advantage plan, and if current patients “age in” to Medicare, they must select an Advantage plan, a spokeswoman said.

“We lose $12 million a year on regular Medicare,” says Mark Mantei, the clinic’s chief operating officer.

Leveling the field

So what will happen under the new health-care law?

The law explicitly says there will be no cuts to benefits guaranteed under traditional Medicare, such as doctor visits and hospital care.

But next year, the extra government payments to insurers that run the private Medicare Advantage plans will freeze at 2010 levels, and roll back until they are essentially equal to regular Medicare. Insurers say the cuts will force them to raise premiums and reduce benefits and choices in Advantage plans, despite a recent stern warning against doing that by U.S. Department of Health and Human Services Secretary Kathleen Sebelius.

If insurers make good on their threats, it might play out in ways similar to what Erik Gulmann of Seattle has already experienced.

Gulmann, 72, was happy with his Regence BlueShield Medicare Advantage plan. For an extra $149 a month, it combined drug coverage, preventive dental services and a wide choice in doctors.

In October, Regence raised his premium to $262 — a 76 percent increase. Regence’s explanation? The feds cut payments to insurers by 4.5 percent, and medical costs increased 6 percent. So how does that equal a 76 percent increase?

We got the same answer as Gulmann: zip, really.

He switched to another Advantage plan. Although his choice of providers is more limited, his doctor’s still covered, his drugs are cheaper, and the plan’s customer-service representatives answer his questions.

Drug coverage is also going to change under the overhaul.

By 2020, the law aims to fill the “doughnut hole” gap in Medicare Part D coverage that each year requires patients to pay all drug costs once their out-of-pocket costs reach $940. They don’t climb out of the hole that year until they’ve spent $4,550.

Filling the hole

This year, people who have fallen into the hole — like Les Gee — will get a $250 check. It’s a pittance compared with what they may spend before their drugs are covered again, but it does signal the feds’ intent to abolish the hole.

Next year, patients who are in the hole will get a 50 percent discount on brand-name and super-expensive biologic drugs. The discount will increase to 75 percent by 2020, when patients will pay 25 percent for all drugs until they’ve spent $4,550 out-of-pocket and their co-pays drop to 5 percent.

But people with higher incomes, who already pay more for Medicare’s Part B (doctor services), will begin paying pay more for Part D.

The real savings in the overhaul of Medicare may come from a gradual shift toward a more cost-effective, prevention-oriented approach to caring for seniors.

Many have chronic conditions such as heart disease, diabetes or cancer, and coordinating care among specialists and keeping them out of the hospital can save money. Medicare’s traditional fee-for-service approach works against that.

“The present system actually discourages coordination and communication between doctors,” says Dr. Marty Levine, a geriatrician at Group Health Cooperative. “This fragmentation really drives up the cost and lowers the quality.”

Many doctors have for years said the whole system needs to change, and some hospitals and clinics have already begun doing that.

For example, some doctors at Group Health Cooperative hold monthly group visits for seniors, combining socializing with a sort of ongoing preventive checkup. At The Everett Clinic, a nurse-coach visits hospital patients to help them avoid unnecessary, expensive return trips.

The new health-care-law supports innovative pilot programs, cranks up payments to some primary-care doctors, and links payments with progress toward better care and cost containment.

For example: Medicare Advantage plans that rate higher on quality measurements will be eligible for increased payments.

Boost for state

In Washington state, where medical providers have long complained Medicare payments are much lower than in other states, a geographic adjustment in 2012 will boost payments for some hospitals, and further studies and adjustments are planned.

Beyond seniors, it’s likely the rest of us will feel the overhaul, too. As an insurer, Medicare is the big dog on the block, and its coverage has long been the model for many private-plan benefits.

To work, the health overhaul must succeed in aligning pay with prevention instead of crisis care, Levine says. And much of this work will start with Medicare. “It’s going to be bumpy and people are going to be scared … ,” he says.

But in the end, “we can actually increase the quality of care and lower the cost — and people will know they’re getting a better deal.”

Carol M. Ostrom: 206-464-2249 or costrom@seattletimes.com

Completed another Second Wind Dream today.

The patient wanted to ride in an old Ford – preferred a 1951 and we got pretty close.  It was a 1949 Ford convertible.

I was corrected by the patient about the two cars being close.  Didn’t I realize that the grill changed, the lights were different?

Nope.  I never could get car identity down to a science but I am pretty good at recognizing the different models of people that I meet daily. 

The patient got his dream meal, dream ride, and some good Appalachian gospel music.  We decorated the patient, staff, and even our restaurant hosts and staff in addition to the restaurant seating area with flowers and anything “Hawaii”. 

The moment came when he and I stared face to face.  “The cancer, it sucks.”  I tend to lose all the pretty words at times like this.  The patient nodded.  “I know none of us are promised tomorrow so no matter what you are facing, know today that we all care about you”. 

As I said the words, I felt my usual spiritual moment of growth.  I meant it. I hurt for him. And – he may outlive me or any one of us there.  Live for today is a great motto but you never realize how great until you stare at the face who has had to make room for the cancer to reside. 

 

 

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I hope to publicly acknowledge Mr. Richard Rettstadt and his wife for taking their award winning 1949 Ford from Young Harris Georgia to Cornelia Georgia to make this hospice patient’s Second Wind Dream a success.