Wills, Trusts & Estates Prof Blog

Editor: Gerry W. Beyer
Texas Tech Univ. School of Law

Tuesday, February 11, 2020

An Alzheimer’s Treatment Fails: ‘We Don’t Have Anything Now’

Brainscan2Scientists collected a group of candidates that were still healthy but had a genetic mutation that unfortunately guaranteed they would develop dementia. During a five year study, the candidates received monthly infusions or injections of one of two experimental drugs, along with annual blood tests, brain scans, spinal taps and cognitive tests. Contrary to the hopes of the scientists participating in the study, the medications did nothing to stop or slow the cognitive decline of the patients.

The data from the study is still being analyzed, so there could be some adjustments to get better results in the future, such as higher doses or starting the drugs on younger patients. The study was small, with only 194 participants, 52 of which took a drug called gantenerumab, made by Roche, and an equal number took solanezumab, made by Eli Lilly. The participants all carried gene mutations that cause an overproduction of amyloid, which accumulates in hard plaques in the brain and is a sure sign of Alzheimer's.

Many anti-amyloid drug trials have failed recently, and companies have spent billions of dollars of this avenue, with the company Pfizer completely bowing out of the race. But many researchers are not ready to throw in the flag. The disease always progresses in the same manner, with an accumulation of amyloid and then the emergence of another protein, tau. “Amyloid and tau define the disease. Bingo,” said Dr. Ronald Petersen, director of the Mayo Clinic Alzheimer’s Disease Research Center. “To not attack amyloid doesn’t make sense.”

Dr. Randall Bateman, a neurologist at Washington University in St. Louis and principal investigator of the study, says that his heart goes out to the patients that have this genetic mutation and are destined to get Alzheimer's. We don’t have anything now to treat these people,” he said, as there are four drugs that slow the mental decline, but none that stop it.

See Gina Kolata, An Alzheimer’s Treatment Fails: ‘We Don’t Have Anything Now’, New York Times, February 10, 2020.

Special thanks to Lewis Saret (Attorney, Washington, D.C.) for bringing this article to my attention.

February 11, 2020 in Current Events, Estate Planning - Generally, Science | Permalink | Comments (0)

Wednesday, January 22, 2020

Why Millennials are the “Death Positive” Generation

HeadstoneThe majority of Americans have not planned for their ultimate end, and especially do not usually do so in their 20's. The journal Health Affairs found that in 2017 only one in three US adults have an advance directive, including a living will with end-of-life medical instructions, power of attorney naming a person responsible for last affairs, or both. The National Funeral Directors Association states that only 21% of Americans have spoken to their family or loved ones about their wishes.

Journalist Jessica Mitford wrote a book about the funeral industry in 1963, finding that consumers only interacted with the funeral industry on average every 14 years, and then only under duress. There was a veil over the business and people were not aware of the choices available until it was left up to their loved ones after they passed. Now social media, digital applications and websites started by a younger generation are changing how Americans as a whole view death.

From WeCroak, an app that spurs you to live in the moment by reminding you 5 times a day that you will perish, to Deadhappy, a pay-as-you-go life insurance company, the death industry is evolving and modernizing. Sites like Funeralocity provide comparative pricing for funeral home services by zip code so people do not have to physically enter nor call the businesses to get quotes. Patrick Schmitt, the co-founder of FreeWill, says that the number of people age 18 to 24 crafting wills is low, but shoots up among 25- to 44-year-olds.

Phil Olson, a technology ethicist at Virginia Tech specializing in death studies, says that “Millennials want their uniqueness or their quirkiness to come out in their final act." But there may be a darker, more finalistic point of view to it - “It’s a way of exercising control over death,” he says. “It’s a way of coming to grips with your own mortality — to think about it and plan for it and try to make it your own.” 

See Eleanor Cummins, Why Millennials are the “Death Positive” Generation, Vox, January 22, 2019.

Special thanks to Joel C. Dobris (Professor of Law, UC Davis School of Law) for bringing this article to my attention.

January 22, 2020 in Current Affairs, Death Event Planning, Estate Planning - Generally, Science, Technology, Wills | Permalink | Comments (0)

Monday, January 20, 2020

Son's Legal Fight for Dead Dad's Frozen Head Against Cryogenics Firm

CryogenicsKurt Pilgeram says that the company Alcor Life Extension Firm was to preserve his late father's body cryogenically, but instead only froze the man's head, and sent Kurt the rest of his ashes. He sued the company for a million dollars, claiming the event caused him extreme mental distress. Now Alcor is countersuing the son, claiming fraud by way of hiding documents from the probate court.

Diane Cafferata, the attorney who represents the company, says that "After [Laurence] Pilgeram died in 2015, his son hid the codicil and all his father's testamentary documents from the probate court and falsely claimed his father died intestate," thus causing Kurt and his brother to inherit their father's $16 million fortune. Cafferata also claims that the son blocked the company from received an $80,000 life insurance policy that was to pay for the preservation. Within the alleged codicil is a provision that states if a beneficiary challenged his father's wish to be preserved, they were to receive merely a dollar.

Laurence Pilgeram was a scientist that worked for several decades in the field of cryogenics and entered into an agreement with Alcor back in 1990 at the age of 67 to be preserved upon his death. When he died in 2015 of cardiac arrest he was 90. The program requires the person's body to be brought to the company as soon as possible after death, but Alcor was not notified until three days after Pilgeram's passing. Because of this, they were forced to do a "neuro-isolation," where only the head is preserved and the rest of the body is cremated because the future may hold the ability to regrow a healthy body around a functioning brain, according to the company's website.

Pilgeram is the company's 125th person to be preserved.

See James Gordon, Son's Legal Fight for Dead Dad's Frozen Head Against Cryogenics Firm, Daily Mail, January 18, 2020.

Special thanks to Joel C. Dobris (Professor of Law, UC Davis School of Law) for bringing this article to my attention.

 

January 20, 2020 in Current Events, Death Event Planning, Estate Planning - Generally, New Cases, Science, Wills | Permalink | Comments (0)

Thursday, January 16, 2020

Dying in the Neurosurgical I.C.U.

BrainscanWhen a doctor diagnoses a patient with brain death, no matter what a doctor does, the organs and rest of the body inevitably follows. But when an injury is devastating to the brain but has not incurred in becoming brain dead, the decisions of the physician as well as the family of the patient can be much more difficult.

Often times inconsistent communication and support between medical staff members and families exacerbate the situation. A new field, neuropalliative care, seeks to focus “on outcomes important to patients and families” and “to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body.” Together, family members and neuro-I.C.U. caregivers can agree on the appropriate action when the patient has not provided a legal document dictating their wishes, including transitioning the patient to comfort care and allowing the patient to die.

Doctors often think it is most important to be precise and not make mistakes; to predict the future and provide patients and their families with medical certainty. But usually connection and empathy are far more important than certainty. Patients and families want to know that the physicians care about them and that they appreciate their pain in difficult circumstances.

See Joseph Stern, M.D., Dying in the Neurosurgical I.C.U., New York Times, January 14, 2020.

Special thanks to Lewis Saret (Attorney, Washington, D.C.) for bringing this article to my attention.

January 16, 2020 in Current Affairs, Disability Planning - Health Care, Estate Administration, Estate Planning - Generally, Science | Permalink | Comments (0)

Friday, December 27, 2019

Alzheimer’s Tests Soon May Be Common. Should You Get One?

AlzThough doctors could determine that a person had Alzheimer's disease by particular symptoms, a formal diagnosis could not be performed until examining the brain during an autopsy. This may be a thing of the past, with two diagnostics tests on the horizon - a blood test that can detect the protein beta amyloid and a brain scan that can detect the protein tau.

These types of diagnostic testing may become more widespread, and with proteins developing on a person's brain before symptoms of the disease appear, a diagnosis can be formed before a patient develops Alzheimer's most feared symptom - dementia. A positive test could help a person get their affairs in order and form a plan for their future. And a drug company, Biogen, claims to have the first treatment that may slow the course of the disease if begun early enough. But how would knowing that one day you may not recognize any of your loved ones affect your choices today? Medical insurance companies are banned from denying coverage for patients with Alzheimer's diagnoses, but nothing is stopping long-term care insurers or even life insurers from denying them.

Dr. Daniel Gibbs, 68, a neurologist in Portland, noticed little slip ups in his memory and decided to get brain scans for beta amyloid and partake in cognitive tests. He was diagnosed as being in the early stages of Alzheimer's disease, and now has severe worries about his future, going so far as telling his family that if he gets something like pneumonia, they should withhold treatment. 

See Gina Kolata, Alzheimer’s Tests Soon May Be Common. Should You Get One?, New York Times, December 20, 2019.

Special thanks to Lewis Saret (Attorney, Washington, D.C.) for bringing this article to my attention.

December 27, 2019 in Current Affairs, Disability Planning - Health Care, Disability Planning - Property Management, Estate Planning - Generally, Science | Permalink | Comments (0)

Thursday, December 19, 2019

US Proposes New Rules to Increase Organ Transplants

OrgandonationAn Associated Press analysis recently found some of the groups that collect organs at death secure donors at half the rate of others, causing missed opportunities that could have saved lives. The organ shortage in America is so severe that more than 113,000 Americans linger on the transplant waiting list — and about 20 die each day. On Tuesday, the government proposed rules that would overhaul parts of the transplant system to make sure organs from the dead no longer go to waste as well as make it easier for the living to donate.

These rules include allowing donors to be reimbursed for lost wages and child care or elder care expenses incurred during their hospitalization and recovery. Currently, the organ recipient's insurance pays the donor's medical bills, but they are still out of work for quite some time. Medicare will also be able to rank an organ procurement organization's, or OPOs, performance of organ collection by using federal death records that show the entire pool of potential donors each has to draw from, which includes anyone 75 or younger who dies in a hospital of conditions that would not automatically preclude donation.

Medicare chief Seema Verma estimated the change could spark another 5,000 transplants a year. A 2017 study by University of Pennsylvania researchers had estimated that a better-functioning system could yield as many as 28,000 additional organs.

See Lauran Neergaard, US Proposes New Rules to Increase Organ Transplants, Associate Press, December 12, 2019.

December 19, 2019 in Current Affairs, Estate Planning - Generally, Science | Permalink | Comments (0)

Wednesday, December 18, 2019

Canada: No Life After Death: Woman Loses Battle to Use Deceased Husband's Sperm

IVF2A man and a woman were excited to become parents, and expressed their joy to their friends and families, exclaiming that they cannot wait until they give their daughter a sibling or two. Sadly, the man died unexpectedly. The next day, the new widow contacted a fertility clinic to inquire into retrieving her husband’s sperm for future reproductive use and was told that a retrieval of this kind should occur within 36 hours of death and that a court order was required. The court authorized the retrieval, but said that nothing else could occur until further order of the court. After a hearing, the court ruled that the widow could not use her deceased husband's reproductive material because he did not give his consent before his death.

The man died without a will and also without any other type of planning documents. Section 8(2) of the Assisted Human Reproduction Act (AHRA) provides: No person shall remove human reproductive material from a donor’s body after the donor’s death for the purpose of creating an embryo unless the donor of the material has given written consent, in accordance with the regulations, to its removal for that purpose.

The widow argued that the court should adopt a broader definition of "consent" based on common law principles. The court rejected that argument, though, where there is clear and unequivocal legislative language before it. The Regulations within the AHRA required the consent to be informed, such that the donor knew that (a) their reproductive material would be posthumously removed and (b) that their reproductive material would be removed specifically for the posthumous reproductive use of their spouse or common-law partner.

See Malkit Atwal, Canada: No Life After Death: Woman Loses Battle to Use Deceased Husband's Sperm, Mondaq, December 17, 2019.

Special thanks to Jim Hillhouse (Professional Legal Marketing (PLM, Inc.)) for bringing this article to my attention.

December 18, 2019 in Current Events, Estate Planning - Generally, New Cases, Science, Technology | Permalink | Comments (0)

Friday, December 6, 2019

Biogen’s Experimental Drug to Treat Alzheimer’s Disease is Greeted with Cautious Optimism Following Scientific Presentation on Thursday

PillsPharmaceutical maker Biogen provided the scientific community a detailed presentation at the Clinical Trials on Alzheimer’s Disease conference in San Diego about an experimental drug that appears to slow the brain’s deterioration in the early stages of Alzheimer’s disease. The drug, aducanumab, may be the first significant advancement in the treatment of the disease since the introduction of memantine, which is commonly marketed as Namenda in 2003 and relieves some of the symptoms of dementia.

R. Scott Turner, director of Georgetown University’s Memory Disorders Program, a partner in the study, said “This study proves that we are on the right track to developing more effective, disease-modifying treatments designed to stop or slow memory decline in the earliest disease stage — when patients are still relatively independent in their daily functions.” The company says they hope to seek FDA approval next year, and if Biogen succeeds, it will be the first drug to treat the underlying pathology of the dementia-causing disease.

The medication assists patients in the early stages of Alzheimer’s disease to continue independently going about their daily business longer than people who did not take it, even slowing down the condition's progression by as much as 40%. Not all of the professionals that witnessed the presentation were sold on the medication, but many saw this as a positive for the Alzheimer's treatment community.

See Fredrick Kunkle, Biogen’s Experimental Drug to Treat Alzheimer’s Disease is Greeted with Cautious Optimism Following Scientific Presentation on Thursday, Washington Post, December 5, 2019.

Special thanks to Lewis Saret (Attorney, Washington, D.C.) for bringing this article to my attention.

December 6, 2019 in Current Affairs, Current Events, Elder Law, Estate Planning - Generally, Science | Permalink | Comments (0)

Tuesday, December 3, 2019

Kansas Considers ‘Greener’ New Way to Bury its Dead

TreeA Swedish company called Promessa is focusing on Kansas to present a new form of disposing of human remains to the United States because of the state's relatively lax cremation laws, especially since the state does not require a fire in the cremation process. The procedure, promession, consists of freezing the body with liquid nitrogen and then "vibrating it into particles." Susanne Wiigh-Mäsak, the biologist who founded the company, said in an interview that promession is cost-effective and eco-friendly.

Kansas' attorney general, Derek Schmidt, released an opinion shortly before Thanksgiving that the decision to allow the procedure within the state should be made by the Kansas Board of Mortuary Arts. Last May, Washington became the first state to allow the composting of human bodies in which the body is broken down into soil that the family or loved ones are allowed to keep or spread where ever they choose.

See Edmund DeMarche, Kansas Considers ‘Greener’ New Way to Bury its Dead, Fox News, December 2, 2019.

December 3, 2019 in Current Events, Death Event Planning, Estate Planning - Generally, Science, Technology | Permalink | Comments (0)

Monday, November 11, 2019

Here’s a Way You Can Help Fight Alzheimer’s

AlzMicrosoft founder Bill Gates has become a prevalent advocate for Alzheimer's Disease in recent years, and believes that finding enough volunteers to participate in medical studies that will help us understand the disease better is a compounding problem. As the population ages, more and more individuals are suffering from this terrible condition. Nearly 6 million Americans are living with the disease today, and it is estimated that by 2050, the number could be as high as 14 million.

No new drug for Alzheimer's has been presented in over 15 years, in part due to the fact that clinical studies for the disease run 4 to 8 years compared to 1.5 years with studies for cardiovascular diseases. After the expensive process of diagnosing Alzheimer's, it is still difficult for a potential patient to enter into a clinical trial. 1 out of 10 people screened for certain types of Alzheimer’s trials will actually qualify, and 80% of do not meet their recruitment goals on time. So how can these issues be resolved?

  • Increase awareness of Alzheimer’s disease so patients start seeking help earlier in the disease’s progression.
  • Develop better diagnostics so that doctors can detect the disease sooner and help people enroll in the right clinical trials, including blood tests.
  • Raise awareness of—and  hopefully openness to—clinical trials among doctors and patients alike.

See Bill Gates, Here’s a Way You Can Help Fight Alzheimer’s, Gates Notes, November 5, 2019.

Special thanks to Lewis Saret (Attorney, Washington, D.C.) for bringing this article to my attention.

November 11, 2019 in Current Affairs, Disability Planning - Health Care, Estate Planning - Generally, Science | Permalink | Comments (0)