DYING, ILLNESS, AND AGING WITH GRACE

(assembled by Pat McNees to facilitate conversations about death, dying, and final wishes)

• We should all have the end-of-life conversation (Ellen Goodman on The Conversation Project). "Too many people are dying in the way they would not choose. Surveys tell us that 70 percent of Americans, for example, want to die at home but 70 percent end up dying in hospitals and institutions....Too many survivors, for that matter, are left not just mourning but feeling guilty, depressed, uncertain of whether they have done the right thing.... And we cannot wait for "the right time"  Read More 

Norman Bauman provided helpful links and comments about the 21st Century Cures Act in the Association of Health Care Journalists' discussion group. I share them here:
• With media watchdogs on the sidelines, pharma-funded advocacy groups pushed Cures Act to the finish line (Trudy Lieberman, Health News Reviews, 12-6-16) ‘Progress’ touted by pharma is a huge step backward for patients. "If the committee’s masterful sales job for the Cures Act is a textbook example of what constitutes effective PR and advocacy in Washington these days for legislation that may not be in the best interests of the public, press coverage offers a textbook example of media abdication of their watchdog role. As HealthNewsReview.org pointed out repeatedly over the past year and half, mainstream journalists, with some exceptions (including Carolyn Johnson at the Post and Sheila Kaplan at STAT) did not look closely, ask hard questions, or explore the downsides until the last few weeks when the Cures Act was a done deal headed for victory."
• The 21st Century Cures Act is a deal that will give a lot of money to the NIH, FDA, Cancer Moonshot,etc., but will also weaken the FDA's standards of evidence used to approve drugs, particularly randomized, controlled trials (RCTs). It's a handout to the pharmaceutical industry.  Read More 

Updated 8-24-17. This former journalist helps caregivers get to know who their patients once were, before dementia took hold (Tara Bahrampour, The Age, 12-16-16) Jay Newton-Small, a District resident, started a business writing anecdote-filled profiles of dementia patients after her father got Alzheimer’s. 'Until seeing her profile, caregivers for  Read More 

Vanessa Gould’s fascinating documentary Obit, shown at the summer Docs festival in Silver Spring, is a fascinating overview of how The New York Times obituary section is run. We learn how they decide which people to honor with an obit, at what length, with how many photos. The obit writers “document the lives  Read More 

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by Pat McNees

Doctors complain the tests are unreasonably costly and time-consuming, do not improve the practice of medicine, and are merely enriching the pockets of the certification boards' pockets.
"Over the last few months, we have seen a great increase in the number of doctors ... speaking up against the current MOC (maintenance of certification) that is now in place," wrote Dr. Linda Girgis  in Are Medical Specialty Boards Extorting Physicians? Dr. Girgis explained why doctors do not want to comply with current MOC requirements:
1. The majority of doctors  Read More 

by Pat McNees, updated 2-18-22)
See also FAQs, stories, and articles about assistance dogs and

             Books about assistance dogs

• A Complete Guide to Service, Therapy and Emotional Support Dogs (Karen Wang, Friendship Circle, 5-23-13) Suggests resources for finding mobility assistance dogs, medical response dogs (for humans with seizures, diabetes, severe allergies), signal dogs for the hearing impaired, guide dogs for the visually impaired, autism service dogs, psychiatric assistance dogs, therapy dogs, emotional support/companion animals.
• Demand for Service Dogs Unleashes a ‘Wild West’ Market (Markian Hawryluk, KHN, 2-16-22) Service dogs can help people with ailments from autism to epilepsy, but a trained dog can cost up to $40,000 — and insurance won’t cover it.
• Assistance Dogs International (a coalition of not for profit organizations that train and place assistance dogs, setting standards for the assistance dog industry)
• International Association of Assistance Dog Partners (IAADP) (an important nonprofit, cross-disability organization representing people partnered with guide, hearing, and service dogs). You can read issues of IAADP's invaluable newsletter Partners Forum online, free.
• Alliance of Therapy Dogs (a national therapy dog registry with 14,000+ members, one aim of which is to provide registration, support, and insurance for members who are involved in volunteer animal assisted activities)
• Bright and Beautiful Therapy Dogs
• Canine Companions for Independence (CCI) (nonprofit organization that enhances the lives of people with disabilities by providing highly trained assistance dogs and ongoing support to ensure quality partnerships)
• Canines for Hope (psychiatric service dogs, and service dog training, South Florida)
• Dogs4Diabetics
• Dog Wish ("America's top psychiatry service dog facility")
• 4 Paws for Ability a nonprofit, 501(c)(3) organization whose mission is to place quality service dogs with children with disabilities and veterans who have lost use of limbs or hearing; help with animal rescue, and educate the public regarding use of service dogs in public places. Mentions service dogs for humans with autism, diabetes, hearing problems, mobility problems, seizures, and kids on the FASD spectrum (fetal alcohol syndrome and/or exposed to drugs prenatally)
• Heeling Allies Assistance Dogs (mental health service dogs, emotional support dogs, and skilled companion dogs enrich the lives of qualified individuals living with certain psychological, neurological and developmental impairments)
• Little Angels Service Dogs (psychiatric service dogs, specially trained to work with veterans with PTSD)
• Love on a Leash (therapy pets)
• New Horizons Service Dogs
• New Life Mobility Assistance (Appalachian State University)
• Paws With a Cause Currently 40% of applicants request a PAWS Seizure Response dog. PAWS’ specially designed temperament test identifies if a dog is most suitable to be a Service, Hearing, Seizure Response or Service Dog for Children with Autism.
• Pet Partners (therapy animals)
Find the bomb! Good boy! Man’s best friend may be our best bet for staying safe. (Andrea Sachs, Washington Post Magazine, 8-4-16) Dogs are being trained and employed in such fields as search and rescue; narcotics, explosives and bedbug detection; and diabetes alert. Some are providing therapy support and detecting ovarian cancer. Nearly 1,000 six-legged teams safeguard more than 100 airports, mass transit stations and cargo-hold sites. In these anxious times, dogs could have a twofold impact on potential terrorist attacks: deterrence and detection. Sachs writes about where some of man's best friends are being trained, and how, to make the country safe.
• Pets for Patriots, companion pet adoption for U.S. military veterans. The Wet Nose Blog: Adoption stories.
• Prisoners and Animals Working for Success (P.A.W.S.) , a program of the Southern New Mexico Correctional Facility. (See Working for a Second Chance (Working Like Dogs, 12-11-15)
• Pet Partners established the Therapy Animal Program in 1990, its goal being to establish rigorous standards for both animals and their human handlers -- to ensure safe and effective therapy animal visits in the community
• The Pets for Elderly Foundation (provides companionship to senior individuals through pet ownership, while saving the lives of companion animals in shelters)
• Service Dog Trainers
• Shore Service Dogs, Inc.
• Working Like Dogs (a resource for people around the world with working dogs and assistance dogs)
• West Michigan Therapy Dogs, Inc.
• Seniors and Pets (AgingInPlace, National Council for Aging Care). "Those who work caring for the elderly say that pets pull withdrawn seniors out of their shell, provide mild activity and cardio through walking and grooming the pet, and offer a way to feel needed and connect with the world. Pet therapy can also help with Alzheimer’s Sundowners Syndrome. Nighttime can be very confusing and disorienting for folks with Alzheimer’s disease. This is when some Alzheimer’s patients try to run away or leave their home. A pet can prevent this issue by keeping those with Alzheimer’s connected and occupied."
Let me know if I've missed anything or if you have comments.

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Stories and articles about assistance dogs

• What is the difference between a Therapy Dog and a Service Dog (Off Leash Dog Training)
• A Complete Guide to Service, Therapy and Emotional Support Dogs (Friendship Circle Special Needs Resource Blog, 5-23-13) "The Americans With Disabilities Act (ADA) of 2011 defines service dogs as those trained to do work directly related to a person’s disability. Emotional support animals and dogs used as crime deterrents are excluded from this definition. A service dog is expected to accompany a person with a disability at all times." Most service dogs receive training in one of the following areas (described in this article, with links to where to find each type of dog):
--- Mobility assistance
--- Medical response (seizures, diabetes, severe allergies)
---Signal (hearing impairment)
---Guide (visual impairment)
--- Autism assistance
---Psychiatric assistance
There are also
---Therapy dogs
--- Emotional support/companion animals
Frequently asked questions about Medical Assistance & Diabetic Alert Dogs (Dogs4Diabetics) For example: Medical Assistance Dogs are service dogs that have been trained to respond to an identifiable element that is available to their senses in order to provide support to their handler, allowing the handler to address some aspect of that medical condition. Diabetic Alert Assistance Dogs are a specific type of Medical Assistance Dog that has been trained to use their highly sensitive scent capabilities to identify the changes in blood chemistry that occur during rapid changes in blood sugar levels. Medical Response Dogs are another type of Medical Assistance Dog that has been trained to assist persons based on recognition of symptoms pertaining to a specific medical condition.
• Once unwanted, these dogs are now on the front lines of wildlife conservation (Rebekah Barnett, Ideas.Ted.Com, 11-6-18) These incredible detection dogs sniff out poachers and smugglers, sniff out invasive plants and animals, track endangered species, diseases as well as , and more, thanks to the work of wildlife biologist and conservation-dog expert Megan Parker. Thanks to Parker and the team at Working Dogs for Conservation (WD4C), some of these dogs have found a new leash lease on life. Worth watching as video Dogs for Conservation (Megan Parker (TedXJacksonHole, 11-5-15) talks about training dogs to work for conservation and preserve endangered species. "Dogs love telling what they know and they have this unrelenting energy and drive. Those are the characteristics I look for in a dog." These dogs families try to get rid of turn out to have remarkable skills and they "don't quit."
• New ADA Service Animal Definition July 23, 2010 (IAADP)
• Federal Service Dog Law in Plain English (Kea Grace, Anything Pawsable, News and more for service and working dogs, 7-10-13) Many helpful and interesting articles on this site.
• Partners in Independence (short film about assistance dogs)
• Assistance Dog Tasks (Joan Froling, Sterling Service Dogs, 10-29-2003) Guide dog tasks (described in detail) include avoiding obstacles, signaling changes in elevation, locating objects on command, retrieving dropped objects, etc., and some are being trained for dual impairments, working with deaf blind students or mobility impaired blind students, for example. Hearing dog tasks are trained to alert their human partners by touch (a nose nudge or pawing) to various sounds at home or outside, including a child crying, a knock at the door, a fire alarm, etc. Service dogs receive six months to a year of training, and some teams master up to 50 different tasks. "A number of the traditional tasks listed [in the article] are proving useful to individuals with hidden disabilities such as a seizure disorder, a psychiatric disorder, a potentially life threatening medical problem or conditions which cause chronic pain." Some tasks help individuals "conserve energy, reduce or avoid pain, minimize dependency on loved ones, prevent injuries or get help in a crisis." Froling lists various retrieve-based tasks, carrying-based tasks, deposit-based tasks, tug-based tasks (such as helping remove shoes and socks), nose-nudge-based tasks (such as nudging shut a dryer door), paw-based tasks (such as calling 911 on a K-9 rescue phone), bracing-based tasks (such as steadying partner getting in and out of bathtub), harness-based tasks (mobility assistance).
• Remember For Me – The Alzheimer’s Aid Dogs (Myrna Shiboleth, Kings Valley Collies)
• Assistance Dogs: Learning New Tricks for Centuries (Jennie Cohen, History in the Headlines, 8-8-11)
• Working Like Dogs: The Service Dog Guidebook
• Turning Your Pet Into a Therapy Dog (Jane E. Brody, NY Times 2-29-16) Jane Brody signed up her dog, Max, to be a therapy dog. "Therapy pets differ from service animals like those that guide the blind, detect impending health crises for people with epilepsy or diabetes, or stimulate learning for children with autism or cerebral palsy. Pet therapy most often involves privately owned animals – usually dogs, but also cats, rabbits, even kangaroos, birds, fish and reptiles – that their owners take to facilities to enhance the well-being of temporary or permanent residents. Thus, in addition to relieving the monotony of a hospital stay or entertaining residents in a nursing home, Max might visit a school where young children wary of reading aloud will happily read to a dog that does not care about mistakes."
• Pets Allowed (Patricia Marx, New Yorker, 10-20-14) There’s a lot of confusion about what emotional-support animals can legally do. People with genuine impairments who depend on actual service animals get annoyed at what people with "emotional support animals" try to do. Service dogs are allowed to go anywhere. They are trained to perform specific tasks. An emotional-support animal (E.S.A.) "is defined by the government as an untrained companion of any species that provides solace to someone with a disability, such as anxiety or depression." Their rights are more limited.
• Adopt A Retired Military Working Dogs (MWD) (Saveavet.org)
• International Dog Assistance Week (IADW)
• Troops betrayed as Army dumps hundreds of heroic war dogs (Maureen Callahan, NY Post, 2-14-16) Daniel, who doesn’t want to use his real name because he’s on active duty, is one of at least 200 military handlers whose dogs were secretly dumped out to civilians by K2 Solutions in February 2014, a Post investigation has found. It’s a scandal that continues to this day, with hundreds of handlers still searching for their dogs — and the Army, the Pentagon and K2 Solutions covering up what happened, and what may still be happening.

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Books about assistance dogs

When you buy a book from Amazon after following one of these links, this site earns a small commission without raising the price of the book.
• Teamwork: A Dog Training Manual for People with Disabilities, Book 1 by Stewart Nordensson and Lydia Kelley
• Teamwork II by Stewart Nordensson and Lydia Kelley
• PTSD and Service Dogs: A Training Guide for Sufferers by Rick and Heather Dillender
• Chelsea: The Story of a Signal Dog by Paul Ogden
• Partners in Independence: A Success Story of Dogs and the Disabled by Ed and Toni Eames
• Lend Me an Ear: Temperament, Selection and Training of the Hearing Ear Dog by Martha Hoffman
• Life on Wheels by Gary Karp
• Moving Violations: War Zones, Wheelchairs, and Declarations of Independence by John Hockenberry
• Planet of the Blind by Stephen Kuusisto
• Training Your Own Psychiatric Service Dog by Katie Gonzalez
• Waist-High in the World: A Life Among the Nondisabled by Nancy Mairs
• Working Like Dogs: The Service Dog Guidebook by Marcie Davis

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• The Wills Party (Shmuly Yanklowitz, Modern Loss, 2-17-16) My wife and I thought finalizing our wills was a good reason to have a party. Here’s why. This excellent article provides links to solid information about estate taxes.
• The Estate Tax Is Irrelevant to More Than 99 Percent of Americans (Institute on Taxation and Economic Policy)

     "The tax law enacted under President Donald Trump has reduced the reach of the federal estate tax to historic lows. In 2019, the most recent year for which data are available, only 8 of every 10,000 people who died left an estate large enough to trigger the tax.
     "Legislative changes under presidents of both parties have increased the basic exemption from the estate tax over the past 20 years. This has cut the share of adults leaving behind taxable estates down from more than 2 percent to well under 1 percent.
      "Contrary to one criticism of it, the U.S. estate tax does not result in “double taxation,” and, in fact, much of the assets subject to the tax are unrealized capital gains, income that would escape taxation forever if not for the estate tax."
• Americans' Ostrich Approach To Estate Planning (Richard Eisenberg, Next Avenue, 4-9-14) "...whether you’re married or single, a parent or childless, a millionaire or middle-income, you need a will. If you have assets in the six figures or higher, you probably ought to have a trust as well, to help minimize estate taxes and avoid probate. A trust also offers you greater control over when and how your assets will be distributed — such as letting your young child receive only a certain amount of money at a certain time."
• How to Avoid Fights Over Inheritance(David Francis, U.S. News, 7-17-12) Experts say a will alone is insufficient to prevent family squabbles.
• The Misguided Crusade to Kill the Estate Tax (Chad Stone, U.S. News, 3-27-15) Proponents of doing away with the so-called 'death tax' don't have their facts straight. To those who want to repeal it, the federal estate tax is an unfair and unnecessary “death tax” that hurts small businesses and family farms. The facts tell a different story. Estates with more than $5 million for an individual and effectively twice that for a married couple are exempt. This isn’t about struggling small businesses and family farms. It’s about another huge tax cut for those who need it the least.
• Best Ways to Give Your Heirs Money While You’re Alive (Lynn Ballou, Next Avenue, 6-4-13) Instead of leaving your adult kids money when you die, create a meaningful gifting plan so you can watch them benefit from your generosity
• How to Talk With Your Adult Kids About Their Inheritance (Lori R. Sackler, Next Avenue, 3-22-13) Avoid family strife down the road by holding key conversations about your estate plans — now.
• 8 Smart Estate Planning Steps to Die the Right Way (Jane Bennett Clark, Pat Mertz Esswein, and Lisa Gerstner, Kiplinger, January 2012)
• Keep Control of Assets After Death (Federal Trade Commission, Next Avenue, 3-25-11) A how-to guide for estate planning. Know the terms, for example: Probate. Trust. Living Trust. Will.
• Put Some Trust in Your Estate Planning (Federal Trade Commission, 11-2-11) You want your assets to go to the right place with the minimum effort. Here are some of the basics for estate planning.

• State Inheritance Tax Chart (About Money) A State Death Tax on Who Inherits Your Property
• Which States Collect a State Inheritance Tax? (About Money)
• State Estate Tax and Exemption Chart (About Money)

• Good News for Beneficiaries and Bad News for Fiduciaries in Regard to Transferee Liability for Estate Tax (Rubin on Tax, 6-2-12)
• American Charitable Bequest Demographics: 1992-2012 (PDF, Russell James) "Only about 10 percent of Americans with a will or trust included a charity as a beneficiary in 2010."

 

• Top 10 Ways to Transfer Wealth (Elizabeth Harris, Worth, 8-21-15) When President Obama signed the Tax Relief Act into law last December, the new legislation paved the way for individuals and families to give away an unprecedented amount of money without triggering any IRS penalty. Through 2012, the lifetime gift exclusion rises from $1 million to $5 million, with a 35 percent tax rate on anything over that amount. The change means individuals can give up to $5 million tax-free; couples, twice that. For the same period, the estate tax allows a $5 million exemption. Estate attorneys and financial planners advise their clients to act now—before the generous new limits disappear. Here are 10 strategies for doing just that.
• Should You Transfer Wealth To Your Grandkids Now? (Ashlea Ebeling, Forbes, 8-2-12) January 2013 update: The fiscal cliff tax deal made permanent the $5 million per person exemption from gift, estate and generation-skipping tax, without curbing any of the wealth transfer techniques available in 2012 described in this article. The annual gift exclusion was $14,000 in 2013.
• How to Avoid Gift Taxes Transferring Wealth Parent to Child (John A. Grey, Trusts and Estates blog, 11-20-15)

EXAMPLES OF FIGHTS OVER INHERITANCE
• Inside the Family Battle for the Newman’s Own Brand Name (Mark Seal, Vanity Fair, August 2015) Paul Newman's will was changed a dozen times; each daughter was told they would inherit a million dollars and would have a foundation set up for them.

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by Ruth Little
When my partners Holly Hanson, Judie Suit, and I started Elders’ Eden, our dream was to create for our mothers (and Judie’s aunt) a real home — a place where they were loved and valued as the remarkable people they are, each with special skills, achievements, and quirks. We wanted them to have close and continuing relationships with caregivers, children, and pets. And we wanted them to be able, if at all possible, to die at home. Read More 

Pat McNees. Updating our story below about the anatomy of medical error:
• Medical Errors Are No. 3 Cause Of U.S Deaths, Researchers Say Medical errors rank behind heart disease and cancer as the third leading cause of death in the U.S., Johns Hopkins researchers say. "Medical mistakes that can lead to death range from surgical complications that go unrecognized to mix-ups with

 Read More 

Often called Obamacare, originally by its opponents), the Patient Protection and Affordable Care Act (ACA) was signed into law by President Obama on March 23, 2010. It is often described as comprehensive health reform, but as health writer Eileen Beal has pointed out
• The ACA is health care insurance, not health care
•  Read More