On August 1, New Jersey became the eighth state to allow doctors to prescribe lethal medication to terminally ill patients who want to end their lives. On Sept. 15, Maine will become the ninth. By October 2019, 22% of Americans will live in states where residents with six months or fewer to live can determine how and when they will die. (Oregon, Washington, Vermont, Montana, California, Colorado, Hawaii, District of Columbia) Oregon was the first state to pass the Death with Dignity Act in 1997. More than 20 years later, opposition groups remain wary of potential abuse. Hospitals with religious affiliations may refuse to allow their physicians to perform the procedure. Yet opposition is softening as support grows. Aid in dying is more available, yet few will choose it.
A look back on the EOLOA in California
California passed the End of Life Option Act (EOLOA) in 2015. Jerry Brown signed it into law in 2016. Four years and it remains controversial and problematic. While the campaign for aid in dying (or death with dignity) continues to make gains across the country, supporters are increasingly concerned about what happens after these laws are passed—on both sides of the issue.
Some fear that the law forces the dying to navigate an overly complicated process of requests and waiting periods.
There are op-out provisions that allow doctors to decline to participate and health care systems to forbid their participation—even in places where aid in dying is legal. In areas where there is a shortage of doctors, it can be difficult to complete the necessary process within the prescribed timeframes.
Those who oppose the legislation fear that it sets up a slippery slope for abuse.
The New Jersey bill had neared passage several times, but derailed in 2014 when Governor Chris Christie threatened a veto. Legislators passed the Aid in Dying for the Terminally Ill Act in 2019 and the governor signed it in April. Governor Janet Mills: “I do believe it is a right that should be protected by law–the right to make ultimate decisions.”
So what’s changed? All states are required to track usage and publish stats
Data show that whether a state has six months or 20 years of experience (Oregon, the pioneer in aid in dying), the proportion of deaths involving aid in dying (also known as physician-assisted suicide) remains tiny.
California’s 2017 data show that 632 people made the necessary two verbal requests to physicians, after which 241 doctors wrote prescriptions for 577 patients. This out of 269,000 deaths that year. The law shows no evidence of widespread abuse or misuse of the law. Attitudes within the medical community are changing. A number of national organizations and a dozen state medical societies have gone from opposing the law to taking neutral stances.
Despite Catholic organizations and other opponents, polls show broad support
In March, an aid-in-dying bill passed the Maryland House of Delegates but failed after a tie vote in the Senate. Opponents are attempting a ballot initiative to repeal Maine’s new law and pursuing a slow-moving court case to invalidate California’s. Yet public opinion polls consistently show broad support for aid in dying.
The small number of users suggests most Americans would not choose this option
There’s enough data from a number of states now to identify trending. The low numbers of users show that most users would not choose this option. However, it may also reflect difficulty in actually using these laws.
A recent survey of 270 California hospitals, published in JAMA Internal Medicine, found that 18 months after implementation of the state’s EOLOA, more than 60% — many of them religiously affiliated — forbade affiliated physicians to participate. Compassion & Choices is intensifying efforts to persuade local health care systems, doctors and hospices to agree to consider patients’ requests.
Laws drawing scrutiny; many believe they’re too difficult with too many safeguards
The model has been the first-in-the-nation Oregon law, which took effect in 1997. The law requires that a terminally ill patient:
Sees two doctors.
Makes two oral requests for a lethal prescription, plus one in writing.
Waits 15 days.
For a terminally ill patient who perhaps lives in a rural area where doctors are scarce or even in an urban area where they’re booked up for weeks in advance, this can become challenging. A Kaiser Permanente study shows that at least a third of those who inquire about the aid in dying measure become too ill to complete the process or die before they qualify. Hawaii’s law took effect in January. It requires a 20-day wait, and they’ve an additional mental-health consultation requirement.
Dementia, testamentary capacity and Aid in Dying
Rural areas face physician shortages, and Compassion & Choices has urged that nurse-practitioners and physician assistants be allowed to provide aid in dying in states where they can legally write prescriptions.
One legislator has introduced several bills that would permit those in the early stages of dementia and other neurodegenerative diseases to use aid in dying, securing prescriptions theycould then use later as their illnesses progressed. “You could make the request when you were cognitively able to do it,” he said.
Yet every existing state law bars that. Those requesting aid in dying must be able to show mental capacity; dementia patients will have lost that ability by the time they’re within six months of dying.
The support for aid in dying continues to gain momentum. The fact that very few people are actually using this measure may be tamping down the fears of those historically opposed to the measure.
Many of our clients are seniors who come in to our offices to create their Living Trusts
Juli Engel was delighted when a neurologist recommended a PET scan to determine whether amyloid — the protein clumps associated with an increased risk of Alzheimer’s disease — was accumulating in her mother’s brain.
Her mother, Sue Engel, is 83 and lives in a retirement community in Florida. She’s been experiencing memory problems and the other signs of cognitive decline that her family could no longer ignore. There were, of course, the small things that drive us all crazy–losing our keys and wandering into rooms, then forgetting why we’re there. But for Juli, there were more serious indicators: Mom had been financially exploited, suffered an insurance scam and caused an auto accident. Time for an intervention.
PET scans can detect amyloid plaques that can indicate Alzheimer’s
PET scans can detect the amyloid plaques that occur commonly in older people’s brains that contribute to Alzheimer’s disease. Receiving an early diagnosis can be devastating to patients and their families, but it can help patients get their affairs in order and make the most of the time they have left. They can begin taking medications that may slow down the spread of the disease. Alzheimer’s can be a slow-moving illness, and early diagnosis gives patients time to join support groups, spend time with their families and learn how to live as fully as possible in their remaining years.
A PET scan’s downside
Amyloid plaques occur commonly in older people’s brains, but not everyone with amyloid will develop dementia. Nor does a negative PET scan mean someone won’t develop dementia. Medicare doesn’t cover the scans’ substantial costs of $5,000-$7,000.
The healthcare community debates PET scans: Few benefits at significant costs
Brain damage from Alzheimer’sbegins years before people develop symptoms, and worried patients and their families may start turning to PET scans to learn if they have this biomarker.
While scientists at Washington University in St. Louis have developed a blood test for amyloid that can predict the development of plaques in the brain, it is years away from everyday use in doctors’ offices.
Some experts fear PET scans offer few benefits, at substantial costs. Currently the criteria developed by the Alzheimer’s Association and nuclear medicine experts call for PET scans only in cases of unexplained or unusual symptoms and unclear diagnoses.
Even with detection, we have no corresponding treatment for Alzheimer’s
Alzheimer’s rates climb steeply at older ages, when people grow more likely to die of other causes before they can develop symptoms. But older people also may be among the 30% or so of those with amyloid deposits who, for unexplained reasons, retain normal cognition. “If we start treating everyone with preclinical Alzheimer’s, what treatments would those be? Multiple trials have failed to find drugs that prevent, reverse or substantially slow Alzheimer’s disease, perhaps because these treatments were introduced too late in the disease’s course.
Concerns about broader acceptance
Some worry about “indication creep,” when a drug or test approved for patients with a particular condition becomes used for others. They also worry about crushing costs for Medicare. “Even if a scan cost zero dollars, I wouldn’t recommend it,” said Dr. Ken Covinsky, a geriatrician at the University of California, San Francisco. “Do you really want to know that you have amyloid in your brain, years ahead of cognitive problems that may never develop?”
PET scans can act as motivators
Proponents of making PET scans more widely available argue that knowing their amyloid status may motivate patients to make lifestyle changes. Stopping smoking, exercising and eating a healthier diet are all found to reduce dementia, even among those at higher genetic risk. Perhaps, too, patients will be more likely to begin advance care planning.
What the scan will mean for Juli Engel
For the Engels, the test delivers tangible results. Once the neurologist documents her mother’s incapacity, Juli can take steps to prevent her mother from driving; she’ll be able to move her into assisted living when needed. As a geriatric care manager, Juli thoroughly understands the trajectory of this disease. Because she also knows that both her maternal grandparents had Alzheimer’s, she is considering her own future, too. Does she have amyloid in her brain? Her family is full of scientists, and we tend to want to know these things,” she said.
Many of our clients are seniors who come in to our offices to create their Living Trusts
Anyone who relies on prescription drugs or cares for someone who does knows that drug prices are soaring. The average annual cost of a brand-name drug has more than tripled in the past decade. Older adults take an average of 4.5 medications each month, which can add up to a total retail cost of more than $30,000 a year for brand-name drugs.
Strong patent laws plus limited pricing regulation over for-profit pharmaceutical companies mean these companies are pretty much free to charge whatever they want for the medicines they offer.
So why is it different now?
Prices are so out of control that even in our historically divided Congress, Democrats and Republicans actually have found something to agree on.
The AARP believes that a combination of tactics can bring drug prices under control, including giving the federal government the ability to negotiate when buying drugs.
It also includes legalizing the safe importation of drugs sold at lower prices in other countries and capping patients’ out-of-pocket costs.
A final approach is to change patent rules in place now and allow manufacturers of brand-name pharmaceuticals to freeze out competition from generic alternatives that could lower prices.
AARP has launched Stop Rx Greed
This is a national campaign to persuade federal and state lawmakers to take action on the issue. The campaign includes lobbying efforts, consumer-information programs and the release of new research about drug prices.
We’re the only nation in the world that doesn’t negotiate the price of drugs
The U.S. has the highest prescriptions drug costs in the world. One reason is that we’re the only industrialized nation whose government doesn’t bargain with drugmakers over pricing.
Australia, Japan and most European nations have some form of a national health program with drug review boards that negotiate with manufacturers. They analyze whether a new drug is more effective than its previous incarnations, or simply a slightly modified version. They’re often able to negotiate significant discounts because they can walk away if companies won’t cooperate.
A quick example: The asthma medication Advair costs $310/month in the US; it’s $38 in Germany. The list is endless and it breaks your heart. Especially when you read about people who are dying because they can’t afford their medications.
Proposed solutions to lowering drug prices
Let Medicare negotiate directly with drugmakers.
Give Medicare Part D plans more flexibility in creating their lists of covered drugs.
Leverage a drug’s price in other countries to identify the price here.
Let’s keep this in mind: Even as Advair’s $38 pricetag in Germany is a fraction of what it costs here at home, the drugmakers are still making money.
Prices are lower elsewhere, specifically Canada. Why not import those?
Tempting, but there’s a very good reason why we can’t just import all of our drugs from Canada, where prescription drugs cost 33% less than in the U.S. It’s illegal, though you likely know someone who gets his/her meds from Canada and has been doing it for years.
Proposed legislation would let patients buy lower-priced medicines from Canadian pharmacies for personal use. Critics say this would lead to harmful counterfeits. But there are ways to institute safeguards. The FDA has already safely imported drugs to address critical shortages. And more than 40% of drugs, both brand-name and generic, are made overseas.
The problem: 20 years of patents before generics can hit the marketplace
At the bottom of all of this is the long, expensive development cycle to get a drug on the market. To encourage innovation and allow pharmaceutical companies to recoup their expenses, the federal government grants 20-year patents on new drugs that give companies the exclusive right to market the medication.
Because it takes years to get the drug to market, manufacturers end up with a monopoly
They do everything they can, including making insignificant tweaks to the meds to extend those patents and prevent generics from entering the market. In 2012, the GAO estimated that generics had saved the U.S. health care system $1 trillion during the previous decade. By extending these patents, big pharma is preventing consumers from accessing affordable healthcare.
So whom should we believe?
Big Pharma justifies high drug prices to cover the costs of research and development at $2.6B/ drug. But wait. Virtually all of today’s new drugs, such as blockbuster immunotherapies for cancer, have roots in government-funded research at the National Institutes of Health or leading academic centers across the country. Every one of the 210 new drugs approved by the FDA between 2010 and 2016 began life in NIH-funded labs, representing grant funding totaling more than $100B, a 2018 report by researchers at Bentley University reveals. That’s right. This is publicly funded research—it’s not coming out of the pockets of the drug companies.
Drug companies rarely, if ever, pursue these fishing expeditions of basic research, the stuff that might one day lead to a breakthrough drug but doesn’t have an immediate payoff. That work is increasingly funded by taxpayers.
Policy makers are considering a variety of options, such as demanding a higher return on investment for taxpayer-funded research that is ultimately commercialized, or allowing the government to control the patents of drugmakers that charge unreasonably high prices.
Limits on out-of-pocket costs. Cap out-of-pocket drug costs for Medicare Part D enrollees.
Value-based pricing. Right now, a drug’s pricetag often bears no relationship to its clinical benefits. How do you distinguish a genuine advance from a mild improvement?
More enlightened consumer education
As part of its drug-pricing blueprint, HHS is calling for increased price transparencyso consumers can make more informed decisions.
Medicare and Medicaid have updated their pricing dashboards.
Congress passed an anti-gag clause allowing pharmacists to tell consumers about drugs that are more affordable than ones they’ve been prescribed.
Drugmakers are being encouraged to include list prices in their direct-to-consumer advertising.
The bottom line:“Real people suffering from real diseases should not have to beg, borrow or steal to control their diseases,” says Rena Conti, associate research director of biopharma and public policy for the Institute for Health System Innovation and Policy at Boston University.
Many of our clients are seniors who come in to our offices to create their Living Trust