14 Years After They Starved My Sister to Death, We Must Never Forget Terri Schiavo

Every year, I write to honor my sister, Terri Schiavo, on March 31^st, the anniversary of her death. For those who do not remember, Terri, at the age of 26, experienced a still inexplicable collapse resulting in a severe brain-injury. As a consequence of her brain injury, she was unable to swallow using conventional utensils, and like many Americans required nutrition and hydration by feeding tube in order to live.

Terri did not have a medical directive specifying who would make her health care decisions in the event she was incapable of making them herself. Therefore, it was her husband, Michael Schiavo, who was appointed by the court to be her medical caretaker and was ostensibly the only person who would decide what type of care, if any, Terri would receive.

Initially, my family did not anticipate this would be an issue. But that changed after Michael obtained a million-dollar medical malpractice settlement on Terri and his behalf. Before the settlement, Michael discussed continuing rehabilitation. Afterwards, he tried to deny her antibiotics when Terri came down with a urinary tract infection. But when my family sued, he relented.

It was in 1997, and as a consequence of Michael not having the permission to end Terri’s life by denying treating her UTI, Michael petitioned a Florida court, for consent to remove Terri’s feeding tube with the intent being that she dies by starvation and dehydration.

My family objected vehemently and offered to care for Terri in her disabled condition and provide ongoing appropriate therapy that was positively impacting her brain-injury. By this time, Michael was living with a woman he called his “fiancé,” with whom he eventually sired two children.

Despite this clear personal conflict of interest – and the financial benefit he would receive by inheriting Terri’s estate from the malpractice case – the judge believed testimony that Terri simply “wanted” to die.

Sadly, after a protected legal battle, Michael was successful, and on March 18^th, 2005, Terri’s feeding tube was removed, beginning a steady and extended death lasting almost two-weeks. I witnessed the process. Believe me, it was an agonizing and merciless demise.

It was during my families very public battle with Terri’s husband that we were often asked whether Terri documented who would care for her in the case of her incapacitation. In other words, did she have an advanced medical directive that specified a health care surrogate. That’s an important issue.

Each year there are over a million Americans who experience brain-injury. In fact, brain-injury is leading cause of death and disability in the US and can, at least initially, impact a person ability to make competent medical decisions. Indeed, with no previously chosen person to act as your medical decision maker and depending on the laws of the state where you live, a large portion of these cases will default to a spouse or family member deciding next medical steps.

In worse case scenarios, and depending on the circumstances, patients can be subjected to medical decisions that are made by the hospitals where they are admitted. This is because hospitals are now empowered to decide whether treatment will be continued or stopped by what is termed as “futile care theory”.

Even those who sign an advance directive requesting continuing care are not necessarily safe. “Medical futility”, sometimes called “futile care” or “inappropriate care,” permits strangers – bioethicists or doctors – to have the final say about a patient’s care, even if the patient has expressly detailed their medical treatment wishes in an advance directive or by identifying a health care surrogate.

These “futile” care determination can happen by either denying (or withdrawing) care when they conclude that a patient’s “quality of life” is arbitrarily “too low” to justify care or the cost of treatment that is, in fact, working by allowing them to continue living. For example, it would be as if doctors vetoed a decision by Michael and my family to continue Terri’s care.

Exacerbating these situations is the legality (and the common practice) to deny/withhold food and water (via feeding tubes). Understand that these are not cases of refusing extraordinary and disproportionate care when one is truly near death, rather the denial/withdrawn of basic and ordinary care to knowingly cause death.

Unfortunately, this is the economic and ideological reality of today’s health care system and is the reason the autonomy of a patient is susceptible by hospital refusal to provide the life-affirming treatment that patients are requesting, and treatment that is helping them.

Ironically, as medicine and ethicists push for a patient’s autonomy, the direction of today’s health care is to control treatment (or the patient) even in such case when a patient is clearly asking for certain treatment as in futile care judgments.

Notwithstanding these possible scenarios, executing a health care power of attorney can help safeguard access to treatment, including basic care, food and water, as well as other forms of appropriate care.

It is harder to impose futile care on a patient who has stated in writing they want treatment and have appointed a surrogate to carry out those instructions. A health care power of attorney is a document that allows you to designate a specific, trusted person to make critical medical decisions if you are not able to speak for yourself.

Equally important is whoever you designate your health care surrogate, they will need to understand the patient’s rights, without being frightened by clinicians or hospital administrators if there is a disagreement over medical treatment.

Appointing a health care surrogate is a simple and not only the smart way, but the best way to ensure that ethical and appropriate decisions are made by someone trusted and can act in a way that advance directives simply are unable to do.

Full Article & Source:
14 Years After They Starved My Sister to Death, We Must Never Forget Terri Schiavo

Happy Safe Families are Preserved by Uncomfortable Conversations

No one enjoys contemplating later-life and end-of-life planning. For a variety of reasons, many older adults postpone making wills and other directives indefinitely. If they are in relatively good health, it just may not seem urgent to plan for a time when they will no longer be able to make sound decisions and care for themselves.

Adult children are often loathe to bring up such topics with their elderly parents. They don’t want to be perceived as being greedy, or they may simply hate to think of a time when a beloved parent will no longer be independent. Helping a senior loved one plan for the future begins with a conversation that may be difficult to broach.

Despite the unpleasant nature of this planning, it’s absolutely necessary, because it leads to greater security. Once the preparations are completed, older adults will have peace of mind, knowing that should a devastating illness strike, their care needs will be met and their wishes regarding artificial life support will be honored. Likewise, they can rest easy, knowing their estate will be distributed exactly according to their directives upon their death. Furthermore, making sure all end-of-life documents are legal and ironclad can help prevent financial elder abuse, which comes in many forms.

In 2018, Wells Fargo authorized a later-life planning survey of 784 seniors aged 60 and older, along with 798 adult children aged 45 to 69. The results painted a picture of how many Americans haven’t made adequate preparations in this area. Below are highlights of what the survey found, as well as real-life cases showing the dire consequences that may ensue from neglecting to put one’s affairs in order.

According to the survey, 57 percent of seniors view talking about later-life needs as a low priority, even when they reach their eighties. Perhaps a measure of denial plays a role in this view, because the average life expectancy of people who reach 65 in the U.S. is the mid-80s. Wells Fargo said the reluctance to plan could open the door to fraud by a trusted person, who, in fact, is untrustworthy.

The survey found that one out of five older Americans is a victim of financial abuse, but only one in ten believe it could happen to them.

Full Article and Source:
Happy Safe Families are Preserved by Uncomfortable Conversations

INOVA Gate IV: Anastasia Broken & Bruised

This 16:30 minute video chronicles the alleged neglect my beautiful and precious sister Anastasia Adams suffered at the hands of Inova Fairfax Hospital designated guardians Kenneth Labowitz and Anne Heishman and the alleged abuse and neglect of the nursing facilities in which they placed her, Dulles Health and Rehab in Herndon, Virginia; Golden Living Centers Sleepy Hollow in Annandale, Virginia, and theEnvoy of Alexandria in Alexandria, Virginia; that led to her untimely unnatural death.

Source:
INOVA Gate IV: Anastasia Broken & Bruised

Hospital Uses Guardianships to Remove Medicare & Medicaid Patients

I am not a lawyer and I readily admit my understanding of the law is limited. However one does not need a law degree or legal education to know the following case is an abhorrent perversion of law and justice.

The case of Anastasia Adams proves that having power of attorney and an advance directive will not protect you if a major hospital like Inova Fairfax in Northern Virginia sues for guardianship and hands you over to their designated guardians. Even having a court appointed guardian will not protect you from guardianship if Inova thinks your child needs Electro-Shock therapy and you disagree with them; as Francisca Zegarra-Rodriguez found out. Francisca was appointed as her son's guardian by Loudon County Circuit Court judge the Honorable Jeanette A. Irby on December 14, 2015. When Francisca disagreed with Inova's treatment decision Inova simply took her to court and had a Fairfax County Circuit judge set aside her guardianship order and took her son forcing him to have ECT. They returned custody of Francisca's son to her six months later.

Inova in both of these cases -- and in 35 others and counting, 19 just since February 2017 -- had Fairfax County judges appoint the same two co-guardians and co-conservators, using the same two guardian ad litem's, and the same external law firm Blankingship & Keith; who allegedly according to public records always state it is an emergency and there are no known power of attorney's even when they allegedly know they exist.

Anastasia's sister Yolanda Bell had been her power of attorney for 15 years when Inova sued for guardianship. In their petition for guardianship Inova and their attorney's did not allege there was abuse, neglect, or exploitation (nor did the circuit court judge find abuse, neglect, or exploitation). All Inova alleged was Yolanda "refused to consent to discharge" and therefore was not acting in the best interests of her sister. So on February 15, 2017, Fairfax County Circuit Court Judge Stephen C. Shannon issued an order appointing Inova's two designated guardians as co-guardians and co-conservators of Anastasia's person, property, and estate. Like Francisca Yolanda had simply disagreed with Inova. Yolanda disagreed with Inova wanting to discharge her Anastasia with a large pericardial effusion (fluid around the heart) and a 12" blood clot, so she appealed Inova's decision to Medicare. Medicare agreed with Yolanda that Anastasia was still too ill to be discharged but Inova had already taken custody of Anastasia.

Since the guardianship order Anastasia's health has been run into the ground by Inova's designated guardians. Allegedly the facility where she was first placed severely broke her right hip and the guardians would not have it set or fixed leaving it grossly deformed. Allegedly the next facility where she was placed broke Anastasia's right ankle and again the guardians would not have it set or fixed. What is allegedly happening to this woman and dozens of others by Inova in this writer opinion is both morally wrong and criminal.

According to public records there are at present approximately 38 people whom Inova Healthcare Services has sued for guardianship, allegedly either to enforce treatment decisions or effect discharge from one of there hospitals. All of these individuals are on Medicare or Medicaid and it appears that when Inova thinks they will not be paid they simply call in Laurie Kirkland from B&K and she files an emergency petition for guardianship. Amazingly at least 35 of the 38 guardianships all have two attorneys from Dingman and Labowitz, PC as co-guardians and co-conservators -- principal Kenneth E. Labowitz, Esq and partner Anne M. Heishman, Esq -- and either Saben N. Johnston, Esq or Gary Jetter, Esq as court appointed guardian ad litems. At first glance this might appear to be a coincidence but upon closer inspection one realizes the same one or two names are shown in appointing the guardian ad litems, with the predominant name being the Honorable Daniel Ortiz.

According to official court transcript in the Anastasia Adams hearing, guardians Heishman and Labowitz have up to 120 at a time. Conservatively, this means if each ward receives $1200 a month in social security benefits the guardians are receiving $144,000 a month and $1,728,000 a year since they have had all funds diverted to bank accounts they control. Meanwhile their wards, as evidenced by Anastasia's situation, are relegated to languish in substandard and poorly run nursing homes isolated from their families, clergy, and loved ones. In fact Anastasia was placed in a room with no TV or radio and left to just stare at the walls 24 hours a day.

Family members dealing with what has been labeled "predatory" guardianships have attempted to obtain legal help but lawyers in Northern Virginia will not help the victim's party because Inova is a major employer and contributes to many political campaigns. Add to this the fact that Kenneth Labowitz started a political action committee (PAC) in the '90s that got Senator Jim Moran (D) elected and served as the president of Legal Services of Northern Virginia; it becomes clearer why families are unable to get any help to fight the Inova guardianship machine and extract their loved ones from their clutches.

Both the U.S. Senate and U.S. House of Representatives have just passed SB178 Robert Matava Elder Abuse Prosecution Act of 2017 and it is waiting for President Trump to sign it into law. The Bill promises some potential protections (and hopefully prosecutions) for those families and individuals who find themselves trap in the agonizing torment of a guardianship like those above.

Full Article & Source:
Hospital Uses Guardianships to Remove Medicare & Medicaid Patients

Dementia Patient At Center of Spoon-Feeding Controversy Dies

Bill and Nora Harris

An Oregon woman with Alzheimer’s disease, whose husband claimed she was kept alive with spoon-feeding against her written wishes, has died.

Nora Harris, 64, died early Wednesday at the Fern Gardens senior care center in Medford, Ore. Her husband, Bill Harris, said the death marks the end of an eight-year battle with the progressive, debilitating disease, which included an unsuccessful court fight to withdraw all food and liquid.
“It is a blessing and a relief,” he said.

Nora Harris, a librarian and scholar who was diagnosed with early-onset Alzheimer’s disease at age 56, had drafted an advance directive that called for no measures to prolong her life, including artificial nutrition and hydration.

Her husband contended that the document covered oral assisted feeding, too. He went to court last year to force staff at the center to stop spoon-feeding Nora, saying the practice violated his wife’s wishes and her advance directive.

“Nora never wanted to live like this,” said Bill, 76, a retired tech worker.

However, a local judge denied his request, siding with the state’s long-term care ombudsman who said state rules to prevent abuse required the center to offer residents three meals each day and provide help eating, if needed. That practice continued in recent weeks, even as Nora’s kidneys failed and she became bed-bound.

“I had to struggle with everybody all the way through to the end to try and respect her wishes,” Bill said.

The controversy turned Nora Harris into a central character in an ongoing debate over advance directives and dementia. At issue is whether patients with Alzheimer’s and other progressive diseases can stipulate in advance that they want oral food and liquid stopped at a certain point, hastening death through dehydration.

It’s a controversial form of what’s known as VSED — voluntarily stopping eating and drinking — a small but growing practice among some terminally ill patients who want to end their lives. In those cases, people who still have mental capacity can refuse food and water, usually resulting in death within two weeks.

“The right to VSED is reasonably well-established, but it’s when a person isn’t competent that’s the issue,” said Paul T. Menzel, a retired bioethicist at Pacific Lutheran University in Tacoma, Wash., who has written extensively on the topic.

Unlike medical aid-in-dying, VSED doesn’t require a law or a doctor’s approval. But the question of whether it’s possible for people who can no longer actively consent to the procedure remains ethically and legally unclear. That’s especially true for patients who open their mouths to accept food and fluids, as Nora Harris did until her last days.

“VSED is a unique exit option,” said Thaddeus Mason Pope, director of the Health Law Institute at Hamline University in St. Paul, Minn., and an expert on end-of-life law. “This is probably the least discussed option. We don’t have statutes, we don’t have regulations, we don’t have a court case.”

Advocates for VSED contend that, with proper medical support, it can result in a peaceful death that allows patients control over their own fate. Critics say the practice amounts to torture and that it will lead to starvation of elderly, disabled and mentally ill people.

Advance directives that tell caregivers to continue or withdraw artificial nutrition and hydration provided through feeding tubes or IV lines are common. Most don’t mention assisted oral feeding, however.

Nearly two dozen states have laws that address assisted feeding, including many that specifically prohibit withdrawing oral food and fluids. Other states address only artificial feeding or are unclear or silent on the issue.

Just one state — Idaho — appears to sanction withdrawal of assisted feeding by a health care proxy “in accordance with a valid directive,” according to a July analysis compiled by Charles Sabatino of the American Bar Association.

But Idaho state law also prohibits any form of assisted suicide and requires “comfort care” for patients if artificial nutrition and hydration is withdrawn. It’s not clear whether a request to halt assisted feeding would be honored, said Robert Aldridge, a Boise lawyer who has worked for years to shape Idaho’s Medical Consent and Natural Death Act.

“Assisted feeding is a somewhat limited situation if the patient is not competent,” Aldridge said in an email.

With more than 5.5 million people living with dementia in the U.S., questions about stopping assisted feeding are becoming more common, said Judith Schwarz, clinical director for End of Life Choices New York, which advocates for medical aid-in-dying.

“Increasingly, this is going to be an issue,” she said. “The people I talk to are much more afraid of Alzheimer’s than they are of cancer. They are afraid of being stuck for years in a nursing home in a diaper.”

The doctor overseeing Nora Harris’ case, Dr. Karen Kahn, called the situation “one gigantic gray zone.”

On one hand, research shows that “feeding somebody with end-stage dementia will not prolong their life,” said Kahn. On the other hand, if a patient accepts food and swallows it, “it should be incumbent on them to feed her,” she added.

Bill Harris said he sat for three hours on Tuesday afternoon watching as Nora took tortured breaths. She died at 1:32 a.m., he said.

“What the court case did a year ago in July was they condemned her to the full gamut of the disease,” he said.

He said he’ll continue to push for changes to state law to allow people with dementia to stipulate in advance if they don’t want assisted feeding.

“From my perspective, the way the laws are written now, they do not respect people with dementia,” he said.

When Nora Harris was diagnosed with Alzheimer’s in 2009, she made arrangements to donate her brain and spinal cord tissue to the University of California-San Francisco, medical school for research.

“She didn’t want anyone else to go through what she did,” Bill Harris said.

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and its coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

Full Article & Source:
Dementia Patient At Center of Spoon-Feeding Controversy Dies

DNR Codes and Levels of Care - Understand Before They're Needed

Many family caregivers of seniors will, at some point, have to answer the question “does your loved one have a DNR?”

Too often that question will come at a stressful time, during a medical emergency.

“What does that mean?” you may ask.

You won’t have to ask that, though, after you read this article.

DNR (Do Not Resuscitate), often referred to as “no code,” is an advance directive document that guides medical personnel to NOT perform CPR or otherwise try to revive your loved one if their heart is stopped.

If your senior loved one does not have a DNR in place, they are considered to be a full code and will receive all aggressive measures if their heart or breathing stops.

As a family caregiver you might be asked about their code status during an emergency — either full or no code or some level in-between.

A DNR advance directive is used only when the person is unable to communicate their own wishes and someone else needs to step in to direct their care, otherwise they will be asked to direct their care themselves.

CPR, cardiopulmonary resuscitation, is a technique that is used to reestablish a person’s heart rhythm and breathing, shocking the heart back to a normal beating rhythm. It can involve chest compressions, rescue breathing, defibrillation, medicine to stimulate the heart function, mask ventilation and intubation for mechanical breathing (also known as life support).
Details About DNR Orders

A doctor is required to sign a DNR advance directive to be placed in your senior loved ones medical record, unlike a living will which requires a signature of the person involved and possibly a witness. A new DNR is required upon each hospital admission, including transfers between facilities.

It is important to know that many EMS (emergency medical personnel) are not allowed to honor a DNR order unless specific to that state and properly executed. For example, some states have a DNR document for use by EMS and then another one for the hospital.

A physician order for life-sustaining treatment (POLST), which covers out of hospital DNR orders, may be available in your state. There are also bracelets or documents kept on the refrigerator to alert first responders or your senior’s wishes.

Full Article and Source:
DNR Codes and Levels of Care - Understand Before They're Needed

Who Makes the Decisions for Your Elderly Loved Ones?

Many aging loved ones have plans for when they are no longer able to make decisions for themselves, but are those plans legally binding??

Advance directives -- legal documents like living wills and power of attorney -- tell your family, doctors and the court your plans for end of life care.

But Channel 2's Dave Huddleston spoke with families who said they lost custody of their loved ones because those advanced directives weren't honored in probate court.

“My mother made it clear who she wanted to take care of her and where she was going to live for the rest of her life,” Doug Franks told Huddleston.

In his mother’s advanced directives, 94-year-old Ernestine Franks said she wanted to stay in her Pensacola, Florida, home, and have her son, Doug, be her guardian when she could no longer make decisions for herself.

Doug Franks, who lives in Austell, already had power of attorney.

But after Ernestine Franks was confronted by a scammer while home alone, older brother, Charles Franks, wanted mom to move near his home in New Orleans. He said he contacted his mother's trust who suggested a private guardianship company step in.

“He stated this was the biggest mistake he's made in his life,” Doug Franks said.

Charles Franks also spoke to Channel 2 and explained his regret about the decision.

The brothers' dispute landed in court.

In August 2012, a Florida probate judge said Doug Franks was unsuitable and unfit to act as guardian because of the dispute.

"We got in trouble because we wanted the best and we had different opinions what was the best for our mom," Doug Franks said.

Ernestine Franks' advanced directives, which included declaring Doug Franks durable power of attorney, designated healthcare surrogate and future guardian, were voided.

A private guardianship company, Gulf Coast Caring Solutions, took control of Ernestine Franks' well-being, and Synovus Bank controlled millions of dollars in her trust.

“It was sad,” Doug Franks said. “The entire way, I drove back thinking I let my mother down, and she's never let me down.”

According to court records, the sons' visits with their mother were limited, and mostly supervised.

Gulf Coast Solutions asked the Franks brothers to not contact their mother three weeks after the guardianship was finalized so Ernestine Franks could establish a routine and bond with her caregivers.

Gulf Coast Solutions and Synovus gave up their rights to the Franks’ estate and Ernestine Franks in November 2014, citing a challenging relationship with the Franks brothers.

A Florida Judge appointed CPA J. Alan Kohr as her guardian and conservator. According to court transcripts, Kohr had been court appointed to serve as guardian or trustee in Escambia County, Florida, 46 previous times.

Doug Franks said guardians spent thousands from Ernestine Franks' trust on food, personal care and fighting the brothers in court.

“It's a dark cloud that's over us all the time,” Doug Franks told Huddleston.

According to Escambia County Court system, guardianship cases are not handled solely at the discretion of the judges.

“Like all other cases in the judicial system, there are statutes, rules and other legal authority that apply and judges use their discretion and judgment within the parameters of the legal authority,” Susan A. Woolf, general counsel for Escambia Courts, told Channel 2 by email.

“Yes, they can override the advance directives,” elder attorney Danielle Humphrey said.

Humphrey said Georgia probate judges rarely void advance directives, and private guardianship is nonexistent in Georgia, but can effect Georgians with loved ones in other states.

In places with a high retirement population -- like Florida -- adult guardianship is big business.

“Possession is nine-tenths of the law and unfortunately, once they become under guardianship, they're like your child,” Humphrey said.

When a loved one lives out of state, it puts them at risk.

She said private guardianship companies, and individuals, can take advantage of an isolated elder.

"They're in it for the money. It's a business, so they're going to treat your mother, or your father, like a business," Humphrey said.

Humphrey, and other experts, said living far from an aging loved one puts them at great risk. They also said an interfamily dispute often leaves probate judges at a loss as to how to deal with the aging relative.

According to the National Guardianship Association, nearly 3,000 jurisdictions regulate guardianship nationwide and everyone is different.

While they stressed there is a great need for guardians and many do a great service, but not a lot of information on guardians nationwide aren’t tracked, so abusive practices, even the number of guardians, is unknown.

Channel 2 spoke to other families who say their loved ones' advanced directives were voided by probate judges, but most guardianship records are closed so it is hard to know why a judge thought a company would be a better guardian than the family member named in the advance directive.

After a four-year fight, the Franks brothers said the guardianship company gave up, because the cash dried up. It was nearly $2 million.

The case went to mediation and the brothers were given guardianship of Ernestine Franks.

They consider it a blessing to have their mother back.

“I was lucky, I was lucky as hell,” Doug Franks said. “We're going to get her back. The key is to help other people, too, so this doesn't happen to them.”

Doug Franks has been working with legislators in Florida and families across the county to strengthen guardianship and probate legislation.

He told Huddleston he is now in the process of moving to Pensacola to be closer to Ernestine Franks.

Source:
Who Makes The Decisions for Your Elderly Loves Ones?

CLICK this link to see the news video

See Also:
NASGA - Ernestine Franks, FL Victim

Five Wishes

Five Wishes is used in all 50 states and in countries around the world. It meets the legal requirements for an advance directive in 42 U.S. states and the District of Columbia. In the other eight states your completed Five Wishes can be attached to your state’s required form.

Why Do Individuals and Families Choose Five Wishes for Their Advance Directive? 

There are several reasons more than 25 million people have used Five Wishes to put their wishes on paper. Choosing a document to express your desires at end of life is a very personal choice. Here are a few of the reasons families and individuals choose Five Wishes:

A. Five Wishes is America’s most popular living will because it’s written in everyday language and helps people express their wishes in areas that matter most — the personal and spiritual in addition to the medical and legal. It also helps you describe what good care means to you, whether you are seriously ill or not. It allows your caregiver to know exactly what you want.

B. Completing Five Wishes is a gift to your family, friends and your doctor because it keeps them out of the difficult position of having to guess what kind of treatment you want or don’t want.

C. Families also use Five Wishes to help start and guide family conversations about care in times of serious illness. Five Wishes is helpful for all adults – everyone over 18 years old – and anyone can start the conversation within a family. Sometimes it begins with grandparents and other times it is the younger family members who bring up the topic. Regardless of your age, you can bring this gift to your family.

Source:
Five Wishes

Wrenching case of man dying in Austin hospital spurs feud over care

Sam Varghese

At the end of a loved one’s life, the family dynamic can become volatile when members disagree on withdrawing care — especially when the dying person was in the midst of getting a divorce.

That was the situation for 46-year-old Sam Varghese, a Sugar Land dentist, who choked while eating a steak dinner with his parents and adult son in Austin on May 9, a lawyer said. Varghese’s brain was deprived of oxygen, and he was left in a coma at University Medical Center Brackenridge.

Doctors determined his condition was terminal and irreversible. They said ongoing care would be futile and recommended removing him from a ventilator Friday evening — when a court’s restraining order was to expire — with the agreement of Sam’s wife and their 19-year-old son.

Sam’s case reflects the wrenching and sometimes public battles that can occur when family members disagree about whether to stop providing life support or other care near life’s end. It also points to problems overwrought families face when a loved one has left no living will, called an Advance Directive in Texas. Sam’s pending divorce adds yet another layer of complication.

Sam’s brother, Sajan, sought to be named guardian and fiercely resisted withdrawing care.

“We need time to nurse him back to life,” Sajan said Friday afternoon. He lives in New York and said he is a medical doctor but is engaged in research, not clinical practice.

Sajan asked Travis County Probate Judge Guy Herman to stop Sam’s wife of more than 20 years, Aji Thankachan Varghese, from becoming his brother’s guardian. Sajan argued in a court affidavit that Aji had “an inherent conflict of interest” because of a “contentious divorce proceeding.”

“Aji appears to want life sustaining care withdrawn as soon as possible and at all costs,” Sajan wrote in the affidavit. “She has also mentioned that as a nurse, she doesn’t make much money and that she is a beneficiary of my brother’s life insurance policy.”

Herman named Sam’s son, Jonathan, a University of Texas student, as guardian. Sam also has a 17-year-old daughter with his wife.

Aji’s lawyer strenuously disputed that his client had any desire to quicken Sam’s death or go after his money.

“Aji, I truly believe, was doing her absolute best, divorce or not,” said Gregory Godkin, her Austin lawyer. She’s a registered nurse at UT’s MD Anderson Cancer Center and has been at her husband’s side since he went from dining at the Four Seasons to the hospital two weeks ago, he said.

Godkin, whom Aji allowed to speak on her behalf, said Sajan presented no evidence to prove she was motivated to quicken her husband’s death.

“There hasn’t been a dispute. Aji has followed the doctor’s recommendations from the beginning,” Godkin said. “We wish there was something new that could help.”

Godkin said Aji was prepared to call witnesses who would testify that Sam had said he never wanted to be kept alive on life support. “Unfortunately, there was no Advance Directive,” Godkin said.
“That’s the big lesson to all of us.”

Sajan, who also has been in Austin since his older brother’s hospitalization, believes an experimental stem cell therapy that he said benefited a patient in Miami might also help his brother.

“I want six weeks done so the brain will heal by itself and then go to the stem cell treatment in Miami or some other facility,” said Sajan, adding that he also offered to take over as caregiver.

Godkin said he has seen no evidence of a possible treatment, and asked that if there were one, why wouldn’t the local doctors pursue it?

Sajan’s lawyer, Sandy Bayne of Austin, said she couldn’t speak to the treatment but asked, “Why this kind of rush?”

“I had six or seven letters saying he was a fighter and loved life,” Bayne said. “I had cousins driving in from out of town, showing me text messages in which he said, ‘Now that I am separated from Aji, I am so happy.’”

She said she believes Sam’s son was acting under his mother’s influence.

Jonathan’s lawyer, Wesley Prewitt of Austin, said his client is “very responsible, and he is not taking this lightly.”

“He is aware of all of the family’s thoughts and concerns, and he’s relying on the advice of doctors,” Prewitt said. “He feels he knows what his father wants. Beyond that, it’s just a very personal matter.”
Godkin said he does not believe anyone in the case was acting with ill will. “People think what they are doing is best. That’s why these cases are so contentious. It makes it so difficult because you have all of these raw emotions.”

He also got a wakeup call. Godkin said that by the end of next week, he’ll be filing his own Advance Directive.

Update: Sam Varghese died at 9:10 p.m. Friday at University Medical Center Brackenridge.

Full Article & Source:
Wrenching case of man dying in Austin hospital spurs feud over care

5 Estate Planning Documents Every Young Professional Should Have

After graduating from college, and even law school, the thought of drafting your estate plan probably did not make the top twenty on your "to-do" list, and why should it? The only thing most young professionals have when they first start out is debt. However, after you land your first job, preparing your estate plan needs to move quickly to the top of that elusive "to do" list. It's especially important if you are starting a family. Below are five documents that should be part of your estate plan.

1. Durable Financial Power of Attorney.
2. Health Care Power of Attorney.
3. Last Will and Testament.
4. Beneficiary Designation.
5. Beneficiary Deed.

After the necessary documents are executed, be certain that one set of originals is placed in a safe or safe deposit box in your bank and let your family know that the documents are there. It is wise to re visit these documents when a major life event occurs, such as a wedding, a birth or even a death, to ensure no changes to your documents should be made. If no major life events occur, it is always a good idea to contact your estate planning attorney every five years to ensure there have been no substantive changes in the laws that may affect your documents. The above information is based on the laws of the State of Arizona.

Full Article and Source:
5 Estate Planning Documents Every Young Professional Should Have >

Complexities of Choosing an End Game for Dementia

Jerome Medalie

DEDHAM, Mass. — Jerome Medalie keeps his advance directive hanging in a plastic sleeve in his front hall closet, as his retirement community recommends. That’s where the paramedics will look if someone calls 911.

Like many such documents, it declares that if he is terminally ill, he declines cardiopulmonary resuscitation, a ventilator and a feeding tube.

But Mr. Medalie’s directive also specifies something more unusual: If he develops Alzheimer's disease or another form of dementia, he refuses “ordinary means of nutrition and hydration.”

A retired lawyer with a proclivity for precision, he has listed 10 triggering conditions, including “I cannot recognize my loved ones” and “I cannot articulate coherent thoughts and sentences.”

If any three such disabilities persist for several weeks, he wants his health care proxy — his wife, Beth Lowd — to ensure that nobody tries to keep him alive by spoon-feeding or offering him liquids. VSED, short for “voluntarily stopping eating and drinking,” is not unheard-of as an end-of-life strategy, typically used by older adults who hope to hasten their decline from terminal conditions. But now ethicists, lawyers and older adults themselves have begun a quiet debate about whether people who develop dementia can use VSED to end their lives by including such instructions in an advance directive.

Experts know of just a handful of people with directives like Mr. Medalie’s. But dementia rates and numbers have begun a steep ascent, already afflicting an estimated 30 percent of those older than 85. Baby boomers are receiving a firsthand view of the disease’s devastation and burdens as they care for aging parents.

They may well prove receptive to the idea that they shouldn’t be kept alive if they develop dementia themselves, predicted Alan Meisel, the director of the University of Pittsburgh’s Center for Bioethics and Health Law.

“People in their 50s and 60s frequently say: ‘I don’t want to be in that situation. I don’t want to put my family in that situation,' ” he said. “And people will increasingly voice those views to others, sometimes in a formal way through advance directives.”

Mr. Medalie, fierce-eyed at 88, has seen people close to him die lingering deaths from dementia and has already decided. His motto, pithy enough for a T-shirt: “If I’m not me, I don’t want to be.”

Dementia, though a terminal diagnosis, presents unique obstacles for those who want some control over the way they die. It generally kills slowly, over years, and “there is often no plug to pull,” said Dr. Stanley Terman, a psychiatrist in Carlsbad, Calif., who specializes in end-of-life decision-making and estimates that several hundred people have requested copies of his Natural Dying Living Will. “There’s no high-tech, life-sustaining treatment that can be withdrawn or withheld.”

Even in the few states where physicians can legally prescribe lethal medication for the terminally ill, laws require that patients be mentally competent and able to ingest those drugs themselves. Mr. Medalie would prefer that option if he were to become demented, preferably with the barbiturates dissolved in “a little vodka.”

But demented patients don’t qualify for so-called death with dignity. VSED is a lawful way to hasten death for competent adults who find life with a progressive, irreversible disease unendurable. Several medical studies have reported that, with proper oral and palliative care, it can also be a comfortable way to die.

The question for proponents of VSED by advance directive is whether the practice can also provide a humane exit for those who, years later, no longer remember or understand why they wanted to use it.

Proponents of the approach acknowledge that dementia patients and their health care proxies will face great controversy if they try to cut off food and water; so will the professionals who care for them.

Nourishment carries connotations, from infancy, that make stopping it feel different from rejecting medical machinery.

“It’s the rhetoric more than anything,” said Mr. Meisel, the author of the legal treatise “The Right to Die.” “You can apply the word ‘starvation.'”

If those opposed to removing patients from ventilators had thought to call it “suffocation,” he adds, the issue might be similarly contentious.

Moreover, the legal status of VSED by advance directive remains untested. In a recent article in The Hastings Center Report, two advocates argued that food and water should not be withdrawn until severe dementia has eroded the patient’s quality of life and “the self has withered.”

That approach would probably pass legal muster, said Paul Menzel, philosophy professor emeritus at Pacific Lutheran University, and an author of the piece.

Spoon-feeding may constitute basic care, however, more akin to changing sheets or bathing than to medical interventions.

“People get in trouble — nursing homes, even family members — for inadequate nutrition or letting someone dehydrate,” said Thaddeus Pope, the director of the Health Law Institute at Hamline University School of Law. “Neglecting basic human comfort care is a big source of elder abuse complaints and criminal prosecutions.” And if a patient demands that his basic care be withheld in the event of dementia? “Nobody from a legal perspective has really meaningfully grappled with that,” he said.

In several states, including New York, Wisconsin and New Hampshire, statutes have made it difficult to withdraw oral nutrition or hydration, sometimes even if that instruction is included in a directive.
 

A court case unfolding in British Columbia shows just how tricky these judgments can be.

Margo Bentley, 83, is a retired nurse with advanced Alzheimer’s disease. Her advance directive specified “no nourishment or liquids” if she became incapacitated.

When her husband and daughter attempted to honor her wishes, the care facility where she lived refused, sending the family to court.

Last February, a judge ruled that although a health care provider could legally honor such a directive, Ms. Bentley’s feeding should continue in part because she swallows food placed in her mouth. That constitutes consent, the judge ruled. The family has appealed.

If swallowing is all it takes to legally invalidate an advance directive, Mr. Pope said, then patients will never be able to specify that they want for food and water to be withdrawn should they become demented.

The moral and ethical aspects are even more dizzying. Can one’s current, competent self make decisions on behalf of one’s future demented self — who may find modest pleasure, years later, in a life once deemed intolerable? What if that later self asks for, or points to, applesauce?

“I can imagine people saying, ‘You’re starving this vulnerable person who’s dependent on us for care when this person is willing to eat,' ” said Rebecca Dresser, professor of law and medical ethics at Washington University in St. Louis.

At the other end of the ideological spectrum, Dena Davis, a Lehigh University bioethicist who has published articles on “pre-emptive suicide,” disputes the notion that withholding food should wait until the advance directive writer has reached a severe stage of dementia.

By that point, “you lost your dignity a long time ago; you’ve probably been a burden on your family for six or seven years,” she said. “It’s too little, too late for me.”

Religious organizations, disability groups and uneasy nursing home administrators will also surely weigh in if patients and families try to enforce VSED as detailed in advance directives. Catholic authorities, for example, have generally opposed removing terminally ill patients’ feeding tubes or IV fluids.  

“We should not encourage people to think their life has no meaning or value because they’re in a fragile, vulnerable and terrible situation,” said John Brehany, a former executive director of the Catholic Medical Association. He predicted that Catholic-affiliated hospitals and nursing homes wouldn’t honor such directives.

None of this remotely dissuades Jerome Medalie. For now, “life is exceptionally good.” A veteran of bypass surgery, multiple angioplasties and two knee replacements, he exercises daily, canoes on the nearby Charles River with his grandchildren in summer, and uses a voice-controlled computer to counter the effects of macular degeneration.His wife and children — and nearly everyone he has met in the last 20 years — are fully aware of his desires and instructions, however, and they are committed to carrying them out.

“I want to go out on my own terms,” he said. “I don’t want any church, the government, any doctor or hospital or even any member of my family to contradict what I want for my death.”

But he hasn’t persuaded everyone. Dr. Susan Mitchell, a Harvard Medical School geriatrician and researcher, has met Mr. Medalie and read his advance directive.

If she encountered a future Jerome Medalie, bed-bound and suffering from advanced dementia, she said, “I would not feel comfortable not gently offering him at least a sip of water and a spoonful of ice cream.”

Full Article & Source:

Complexities of Choosing an End Game for Dementia

Special Needs Adult Children Need A Plan for Their Future

After a lifetime of caring for their child at home, parents of children who are intellectually and/or developmentally challenged don't want to give up their authority to strangers, but what happens if they haven't established plans for when they are too sick to provide care or have passed away?

For decades in their homes, many families have provided full-time care for family members who are severely disabled, without accessing in-home social services. They may have resisted tapping into government programs or didn't trust others to help. Some have cared for children with multiple disabilities who don't fit into supported housing scenarios. Whatever the case may be, parents should not hesitate to find out what they can do to provide for their adult child with special needs when they are gone.

With a 10-year wait for home and community-based programs in Texas, it often takes a crisis such as the death of a parent, a medical emergency or another tragic event to get priority on the waiting list.

Establishing a decision-making process during the parents' lifetime reduces distress for the adult child who is disabled when transitioning from home to community services.

If an adult child who is disabled has capacity, then it's important to put advance directives in place, including a Durable Financial Power of Attorney, Medical Power of Attorney, HIPAA Authorization, Physician's Directive or "Living Will," and a Declaration of Guardian to allow trusted decision makers to step in when parents are no longer able to.

If the adult child does not have the requisite capacity to execute advance directives, then a guardianship will need to be established for decision making. Putting a guardianship in place ahead of time, during the parents' lifetime, eases the transfer of decision-making.

Full Article and Source:
Elder Law:  Special Needs Adult Children Need a Plan for Their Future

Boomers Against Elder Abuse: Letter to Mr. Jim Jackson

 

Dear Mr. Jackson*-- I am a national advocate for vulnerable adults and elders under guardianship. My Facebook Page, Boomers Against Elder Abuse, which researches this subject has 61,000 followers This page was started here in New Mexico. As you know, news is breaking all over the nation about severe financial abuse by guardians and conservators who are not adequately supervised by experts outside the court.

I attended the International Congress on Adult Guardianship in Washington D.C. in May, and would like our New Mexico task force on guardianship to consider reforms in legislation that would improve the situation in our state. Highlights of reform include: Michigan is reinforcing rights of wards, requiring courts to specifically state the exact powers of the guardian/conservator. All other ward rights are retained. "Best interest" can't override these without a court order. In California ward's rights to visitation, mail, and phone calls have been bolstered as well.

The head of Michigan's Arc, Dohn Hoyle, suggests that guardianship/conservatorship works against the safety the ward. He feels that the idea of protecting an elder or vulnerable adult by removing the fundamental rights that serve as their protection is fundamentally flawed. Limited guardianships only are allowed in Germany, and wards do not lose legal capacity to properly defend themselves. In Hong Kong, only $12,000 per month can be removed from a guardianship account in order to protect the ward's assets. Limited guardianships are insisted upon as first priority.

Supportive decision-making with a circle of support is being considered as a future option among many reformers. Treating a ward like a child, with the guardian acting as a parent of a child is no longer acceptable in the 21st century. Persons with Disabilities and Disabled Elders need to be treated as integrated members of society, not separated from the world around them by social discrimination, restriction, and loss of quality of life. This, unfortunately is the case for many wards in our state. I became interested in this topic when a friend of mine was put under guardianship and charged perhaps as much as 1 million a year for "services." Heirs are not allowed an audit of where and how the ward's money was spent, and the records are sequestered.

Illinois is proposing that clear and convincing concrete proof be required to remove previously assigned P.O.A. and Health Directives. My friend had all of his documents in place, and they were quickly tossed out the window. Too often these documents are rescinded by the court without concrete evidence of mis-management or wrong-doing. Often the elder's wishes when expressed while having capacity are completely ignored, as was the case with my friend. This is true throughout the nation. If P.O.A.'s were respected and not allowed simply to be tossed without question, this would reduce the number of guardianships/conservatorships in our state.

When it comes to wards with substantial assets, a small number of wealthy families in New Mexico are claiming that 50 million dollars is missing from their parents' estates after conservatorship. They aren't allowed to hire outside accountants to review the records which are also sequestered by the courts. With no one outside the court carefully examining guardianship accounts, even though there are honorable conservators and guardians, the laws basically, as reformers see it, encourage unmonitored theft by family guardians and professional guardians. With the laws as they are, theft can too easily be covered up, and severe conflicts of interest exist in the courtroom setting.

Some families are forced to sign confidentiality agreements to receive inheritances, and there is no attention to any of these malpractices by law enforcement which claims that guardianship and conservatorship theft is a civil matter. It's not. It's potentially criminal, which can only be ascertained by thorough investigation, which is obviously no possible due to the egregiously insulated, cozy, closed system. The very nature of the conflicts of interest and secretive nature of the guardianship court proceedings in our state looks very suspect to the public. This perception will only grow as publicity of practices increases, which is occurring everywhere. We need to act proactively to protect the reputations of those who are honorable in these professions, and to weed out those who are not. Only stronger enforcements will do that.

In Palm Beach, guardianship fraud is so rampant that the state has given all county clerks throughout the state the independent authority to subpoena records for three levels of audits depending on each case brought to their attention.. A guardianship fraud hotline was established in Palm Beach due to the severity of complaints.

We need a mechanism here for complaints because there is no recourse for investigation into the practices of conservators and the fees charged by guardians and their employees. Heirs have no recourse under our system, and even though an elder's money does not belong to heirs during an elder's lifetime (and some families seem to forget that) those assets should be for use by the elder. However, most of these assets are diverted to often unwanted "services" that are truly suspect.

One million dollars per year for one person's care, for example, with no proper auditing outside the courtroom where these charges are considered fine, is outrageous and obviously not in an elder's best interest. Elders have spent a lifetime accumulating legacies to pass along for generations to come. It is not in any elder's best interest to have everything they have worked for depleted mercilessly by total strangers, who often isolate and medicate the ward beyond recognition. I have seen this behavior personally, and in any other arena, these practices would be considered financial, emotional, and physical elder abuse.

My Facebook page on this topic is gravely concerned with the rights of elders as Boomers approach old age. Too many abuses are occurring under the guise of protection. This needs serious attention in our state. Since stories in the press are breaking out at a steady clip, around the nation, it's only a matter of time before the industry here is put under scrutiny. 12 family members of victims have confided in me, and the abuses they have suffered are immeasurable.

I appeal to you, as having been in the forefront of guardianship/conservatorship reform in our state, to see to it that elders who choose to retire here in our state are safe. I hope that the work of the task force on guardianship will continue to examine these problems. I also strongly believe that efforts towards reform must include elder advocates who have studied reforms in other states and countries. We want to be part of the solution. Right now, as outsiders, all we can do is point out the problems.

Thank you--

Marcia Southwick
Boomers Against Elder Abuse

*Mr. Jim Jackson is Director of Disability Rights and a member of the NM 2013 Legislative Task Force on Guardianship

Money Magazine: How to Protect Your Family's Finances

Since our heroes have worked hard to safeguard other people’s money, they have expert advice for protecting your own money in different situations.

Home buying: “Get your free credit report and address any errors before applying,” says Juliana Eades of the New Hampshire Community Loan Fund. Also, make sure to understand all of a loan’s terms and conditions — any prepayment penalties, for example — not just the interest rate.

Financial education: “Take advantage of free financial workshops,” says Sandra Olson, who teaches financial skills to refugees in Minnesota. Many credit unions, banks, community centers, and libraries offer them. But be aware, she adds: Some speakers are there to sell products.

Illness: Make health care and property powers of attorney and advance directives known to your loved ones before the need arises, says Sylvia Rudek of Illinois, director of the National Association to Stop Guardian Abuse. This reduces the chance of a dispute that might end up in court.

Source:
How to Protect Your Family's Finances

When Advance Directives Are Ignored

In the final two years of her mother’s life, Lisa McAllister started carrying copies of her mother’s do-not-resuscitate and power-of-attorney forms in her purse and her car. Her mother was cycling between the hospital, assisted living and rehab — “a round robin of craziness,” said Ms. McAllister, a retired copy editor — and was clear about not wanting to be kept alive with substantially diminished quality of life.

 

One night in 2012, after her mother had fallen in a nursing home in Silver Spring, Md., Ms. McAllister looked at her mother’s medical chart and saw that someone had checked the box that said, “No D.N.R.”

 

“I said, ‘There’s a D.N.R.,’ ” Ms. McAllister recalled. “The floor nurse said, ‘No, there isn’t.’ ” Ms. McAllister got testier. “There is, it’s in the file. I’ve seen it there.”

 

They went to the director of nursing, who checked the records — and yes, there was the D.N.R. form.

It wasn’t the only time Ms. McAllister had to intervene to stop aggressive treatments. “It was a common occurrence,” she said. “There’s a lot of bodies and a lot of files and people coming and going.”

 

Health care professionals, ethicists and advocates continually urge older people to document their preferences about end-of-life medical decisions, and a growing proportion do. A recent large national study, tracking more than 6,000 people over age 60 who died between 2000 and 2010, found that the proportion with advance directives climbed to 72 percent from 47 percent.

 

Full Article and Source:
When Advance Directives Are Ignored

See Also:
NASGA Members in Legislative Action

NASGA on HB5573 (Illinois)

Letter of Support to Illinois Representative David Harris Regarding HB5573, Introduced to Strengthen and Enforce Power of Attorney and Advance Directives

Learning to Embrace Empowerment in the Last Chapter of Life

~by Jeanne Dennis, Senior VP at VNSNY Hospice Care.

It was Georgia's* 90th birthday party. Unlike several of the other guests (who were at least two decades younger), she was lively, bright and full of optimism. While her party guests shared their fears of disease and economic disaster when they reach the age of the new nonagenarian in their midst, Georgia laughed it off. "There's really nothing to be afraid of," she winked. "The ultimate empowerment is living each day to the fullest, having determined how the end of your life will take place."

 "I can't stop aging, and while I take good care of myself, I don't know if or when I might get terminally ill," Georgia explained. "But it doesn't mean I'm powerless. I don't have to spend my days wondering 'what if.' I made sure I discussed ahead of time with my family what's important to me. That gave me such peace of mind that the last chapter of my life will be the way I want it, and it also gave my loved ones guidance on how to make decisions on my behalf."

Our nurse was impressed by this forthrightness -- it's not often that we encounter such acceptance in our day-to-day hospice work. Georgia must've read her mind, because she continued, "I looked around and saw that too many people die in a manner they would not choose, hooked up to machines or unable to express their needs or preferences because they'd been afraid to prepare when they had the chance. I was determined that wouldn't happen to me. After all, I'm not the only one who would suffer -- think of the toll it would take on my family and friends. I couldn't put them through it."
One of the first steps for anyone, young or old, to prepare is an advance directive. An advance directive is a type of written or verbal instruction about health care which is to be followed if a person becomes unable to make decisions regarding his or her medical treatment. There are four types of advance directives, each enabling an individual to convey end-of-life wishes, in the event that he or she is unable to communicate:

• A Health Care Proxy (also known as a Health Care Power of Attorney) allows you to appoint a person you trust as your health care agent who is authorized to make medical decisions on your behalf.

• A Living Will allows you to document your wishes concerning medical treatments at the end of life.

• A Do Not Resuscitate Order (also known as a DNR) is a physician's order that directs health care professionals and/or emergency medical personnel to refrain from performing cardiopulmonary resuscitation (CPR), if your heart or breathing stops. [A DNR is only completed when someone is chronically or seriously ill.]

• An Organ Donor Designation allows you to document your wishes regarding donating your organs after your death. Even if you have indicated that you would like to be an organ donor, your family or health care proxy/agent must give their permission in order for the donation to take place.

Full Article and Source:
Learning to Embrace Empowerment in the Last Chapter of Life

See Also:
Hospice, Inc.

Letter of Support to IL Representative David Harris Regarding HB5573, Introduced to Strengthen and Enforce Power of Attorney and Advance Directives

Dear Rep. Harris and members of the Illinois State Legislature,

Thank you Rep. Harris for bringing this Bill to a vote based on the very troubling Dolores Bedin case.

As a physician for more than 35 years, practicing both in a Hospital and privately, I ask you and the Illinois State Legislature to strongly support this bill.

I have heard numerous medical horror stories like what the Bedin family experienced. People, devoted to the health care of their aged or infirm family members, have been bullied, harassed, intimidated and extorted by hospitals and Hospitalists who do not take the time to assess the circumstance but jump to erroneous conclusions about family members who often devote their livelihood and very lives to protect their loved ones.

I cannot say why such travesty of care has occurred. Whether for financial gain, inadequate training, or incompetent assessment of the situation. Perhaps it is attributable to the philosophy of a particular institution or personal grievance when challenged by a devoted family member advocate.

Each situation, of course should be judged on its own merits and not have a blanket procedure take place which has even disenfranchised some families and their loved ones, when ill, like Dolores Bedin.

I have direct knowledge of the Dolores Bedin situation having been a friend of the entire family for many decades. The incidents of this "case" were disclosed to me contemporaneously by Ms. Bedin. The daughter of Dolores Bedin, Janet Bedin, has not only been a devoted daughter and sister but indefatigable in being an advocate for her father, mother and brother's medical care.

What occurred to them is unconscionable. They learned by accident while Dolores was in the ER, of a series of CT Scan results taken at the hospital documenting a mass in Dolores’ pancreas which was never disclosed to the patient or family. This was clearly wrong.

When they found out and asked questions, they were bullied, intimidated and all threatened to be kicked out of Hospital, this was wrong.

To have Dolores not be given the diagnosis, after multiple CT Scan reports, or told that she had a mass in her pancreas in a timely fashion even with multiple studies performed, was wrong. For this family to learn, only by chance, that Dolores had pancreatic cancer was wrong.

To threaten Janet and her disabled brother Lex, who Dolores cared for all her life, with a phalanx of attorneys, and hospital administrators, ordering Hospitalists to document Dolores as incompetent, falsely I might add, unless she agrees to their discharge plan, was more than simply wrong, it was sadistic.

It would seem, the fear of Risk Management being called to task on the errors of care led the hospital to use such punitive tactics.

I wish you the best of luck in getting this Bill passed and each of you should feel gratified for trying to prevent more tragedies like this from occurring.

Sincerely,

~Philip B. Luloff MD

*****************************************************************

NOTE:  Highlight of the Proposed Legislation:

11		(755 ILCS 5/11a-8.2 new)
12		Sec. 11a-8.2. Petitions; previously executed documents. No
13		petition under this Article shall seek relief that is in
14		conflict with any properly and previously executed will, trust,
15		power of attorney, durable power of attorney, health care
16		directive, advance directive, or other directive unless undue
17		influence is proven in the creation of the document, by clear
18		and convincing evidence, at a hearing conducted under the rules
19		of civil procedure of this State.

 
See Also:
NASGA Members in Legislative Action

Read More About Illinois Representative Harris

Read the full text of HB5573 and follow the bill

NASGA on HB5573

Dolores Bedin, Illinois Victim

A Growing Trend in Medicine, by Tina Stein

Note:  A little over a month after his installation, Pope Francis met with daughter, Janet Bedin, and blessed Dolores Bedin's photo (Dolores was a devout Catholic.) Janet wrote a letter to him about what happened to her mother and told him how guardianship can be used as an abuse of process in a retaliatory manner by a hospital (April 22, 2013).

Government would pay seniors to create advanced directives under Senate bill

Medicare beneficiaries would be paid to create advance directives and store them in an easy-access system if a recently proposed Senate bill were to become law.

The “Medicare Choices Empowerment and Protection Act” was introduced Friday by Sen. Tom Coburn, M.D. (R-OK). It would pay eligible beneficiaries $75 for creating an online advance directive or $50 for creating one manually in 2015, with incentives in subsequent years tied to consumer price inflation.

It also calls for an accreditation process to be established for advance directive vendors participating in the program, and the creation of a system to facilitate easy access to advance directives for beneficiaries, suppliers, providers and healthcare proxies. Registration of the directives would occur during a beneficiary's initial enrollment in Medicare Part C, commonly known as Medicare Advantage.

The bill says that the Centers for Medicare & Medicaid Services should consult with experts when establishing and implementing the program, including nurses, palliative care experts and health information privacy authorities.

Advance directives generally are seen as instrumental in guiding healthcare for those who lose the ability to communicate their wishes, including long-term care residents with advanced dementia. Recent studies have indicated that directives might be enhanced by including more information about preferred treatment settings and “gray area” issues, such as providing antibiotics to terminal patients.

Full Article & Source:
Government would pay seniors to create advanced directives under Senate bill