A CAUTIONARY TALE AND CALL TO RAISE OUR VOICES: Denying family the right to visit sick or dying loved ones is cruel and unjust.
By Kathy M. September 2020
Dying is a natural part of life. It is not possible to know the exact time or hour when an individual will leave this world and enter the next. For some, signs that they are approaching the “end” are more obvious than for others. Such was the case for Kathy McInnis’s husband. Diagnosed with stage 4 pancreatic cancer, Jay knew his days were numbered. Kathy understood that a person’s dignity stays intact until the very last breath. She desperately wanted to be with her husband during the final chapter of his life; however, the hospital that “cared” for Jay denied them access to each other, citing COVID 19 as the reason. The following story, told in Kathy’s own words, is a cautionary tale that illustrates how extremely important it is to use your voice to care for and protect your medically vulnerable loved ones in every precious moment of their lives.
On April 24, 2020, my husband, Jay, went to Fairview Ridges emergency room with persistent stomach pain. I was not allowed to accompany him. Six hours later, a doctor called on a speaker phone. With Jay in the room, the doctor informed me that my husband of 25 years had been diagnosed with stage 4 pancreatic cancer which had spread to his liver and nearby lymph nodes. He also had four blood clots – one in his stomach, two in his lungs, and one in his leg. He was being admitted to the hospital.
After hearing this devastating news, I begged them to let me be with him. Because of COVID, they said, “No,” even though my husband had been tested for COVID and was negative. I asked them to test me and told them I would wear all protective gear, yet they still refused. Jay was in the hospital for five days without me by his side. After he came home, we met with an oncologist who told us my husband’s condition was incurable. Nevertheless, we decided to try chemo to buy some time. Jay had a port put in on May 8th and his first chemo that day. I was not allowed to be with him for either procedure.
On Sunday, May 10th, he was walking, talking, and able to care for his personal needs but complained of a pain in his stomach. Because of the blood clots, the cancer nurse on call recommended he be readmitted to the hospital. They again tested him for COVID, and he was negative. He was in the hospital until May 15th. During that time, he was declining at a rapid pace. I begged to be with him, but they refused to allow it. They told me he had contracted sepsis. I knew he was dying. In fact, he called me two days after being readmitted, begging me to come to him because he could feel he was dying. He was very distraught. I hung up on him, called the nurses’ station on his floor, and asked them to go to him immediately. I was told that his nurse was busy and would get to him when she could!
I was extremely upset. The only way I could be with my husband was if he would agree to enter home hospice. He made that choice. I don’t think he wanted to give up, but he wanted to be with me. He was scheduled to come home May 15th. Hospice set up equipment in my home, including a walker, wheelchair, and bedside urinal. When he came home, I was shocked at his condition. Jay was nearly comatose, unable to communicate, and unable to control his bodily functions, yet they sent him home without a urinary catheter. When he wet the bed, I had to call 911 to come and assist getting him up to change him and the bedding. The paramedics asked me why they did not put in a catheter before sending him home. I had no answer. He was dirty, and I could tell that he had not been washed. His breathing was rattled. He had blood coming out of his mouth and sores in the back of his throat because he had not been properly treated for thrush.
My brothers came to assist me. They had been with Jay prior to his readmission to the hospital and were also shocked at his rapid decline. The neglect was so obvious it made me sick. The hospital staff had neglected to explain to me the dreadful state my husband was in before sending him home. He died on May 17th at 12 noon. It had been impossible to communicate with him during the day and a half he was home. A couple days after he died, I received a call from the hospital chaplain. I told him how devastated I was that I was not allowed to comfort and care for my husband while he lay dying in the hospital. According to the chaplain, if my husband had been a child and I was his parent, I would have been allowed to be with him. This made no sense to me. I had been my husband’s constant companion for 25 years. What was the difference?
After Jay died, I called the adult abuse hotline at the Minnesota Health Department and filed a formal complaint about the neglect and the hospital’s refusal to let me be by my husband’s side to comfort and advocate for him when he was desperately ill. I was told that, by law, they had to respond formally to my complaint within two weeks. They did not respond. I called a month after filing the complaint to ask about its status The Health Department eventually sent me a letter stating they would not investigate my complaint and advising me to contact patient relations at Fairview Ridges Hospital. I then contacted the hospital and stated my complaint. They told me it would be investigated. The hospital sent me a letter disputing my complaint, claiming my husband was not actively dying when he was released; that he was able to use the restroom on his own. I was stunned by the hospital’s response. My husband was totally unable to do anything when he arrived home. I had to call for assistance just to get him out of the bed.
Reading through Jay’s medical records, I found an entry by the doctor who did his exit evaluation right before he came home. The doctor stated he did not believe my husband would live more than a day or two. So, yes, he was actively dying while in the hospital. I am angry that I could not be with my husband, and I feel guilty about it, even though I was denied access to him.
By telling what happened to my husband and me, I hope to help prevent this happening to others. There must be allowances for family members to be with their vulnerable loved ones in healthcare facilities, even during a pandemic. I hope others who have experienced this same scenario will step forward and join me in declaring, “Enough is enough!” No one should have the authority to take away anyone’s right to be with their loved one when they are dying!
USE YOUR VOICE
The below story serves as a reminder of how important it is to be a voice for the voiceless.
In the Fox News article titled “Janice Dean Finally Testifies on NY Nursing Home Deaths, Demands Full Investigation with Subpoena Power” Dean is speaking out for residents living in assisted living or care facilities – residents who have been placed in danger due to the governor’s decision to combine healthy residents with covid-19 positive patients who have been discharged from hospitals. This is very personal for Dean as in recent weeks both her mother-in-law and father-in-law, who lived in care facilities, passed away from Covid -19.
In an interview with “Fox & Friends” Dean stated that Governor Cuomo is not willing to provide the exact number of Covid-19 fatalities in adult care facilities. Dean said “We need those numbers to move forward and help change the laws. We need an independent bipartisan investigation that involves subpoena power so we can get the health commissioner on the hot seat and ask questions and get truthful answers.”
Each of us needs to stand up, protect one another and be an advocate for the voiceless!
RETHINKING NURSING HOMES: SHOULD I TAKE MY LOVED ONE HOME DURING THE COVID-19 PANDEMIC?
Reading the nursing home abuse stories in local newspapers or hearing about the extraordinarily high number of Covid-19 deaths in nursing homes across the country, one wonders if nursing homes are the solution they once were thought to be. If you have a loved one in a long-term care facility or are considering this care option, we urge you to please read (or re-read) “Rethinking nursing homes. Supporting community based care” by Alex Schadenberg, Executive Director, Euthanasia Prevention Coalition.
“SNIFF TEST” USED TO PREDICT RECOVERY OF UNRESPONSIVE PATIENTS
“Surprising New Test for Predicting Recovery after Coma” was published August 25, 2020 by Nancy Valko on her blog. While the study referenced in this article is small and should be expanded, the results are stunning. They suggest that a sniff test should become a standard part of medical evaluations done on patients with severe brain injuries. Maybe “hopeless” cases aren’t so hopeless after all.
HALO ON THE MOVE
Last week, Jo Tolck, HALO Board member, and Anne O’Meara, HALO Executive Director, traveled to Fargo, ND to attend the 2020 Lutherans for Life Regional Conference. The theme was “From Invisible to Indispensable” (1 Corinthians 12:22). Great speakers addressed a range of profoundly important topics. This event was a wonderful opportunity to network and spread HALO’s message! If you are aware of an upcoming pro-life conference in your area, HALO will be happy to attend and/or provide materials! Simply send an email to feedback@HALOvoice.org.
Executive Director of HALO,
Anne O’Meara at HALO’s Booth.
Regional Director of MN & National Conference Director, Virginia J. Flo.
Over the years that I served as executive director at Illinois Right to Life, I received a number of calls from concerned relatives about threats to the wellbeing, or even the life, of loved ones who were placed under the care of public guardians. In all of these cases the situation leading to the appointment of a public guardian was initiated either by a relative or a social worker who disagreed with the care being provided by the caretaking relative. Based on my interaction with these concerned caretaking relatives, I learned that they lost most or all of their rights to make decisions about the care of their relative once the public guardian was appointed. Often these guardians were making medical decisions based on quality of life criteria, which in some cases led to hastened death for wards under their care, while concerned relatives could only watch helplessly in horror. I concluded, and from then on recommended, that family members need to avoid involvement of public guardians, if at all possible, to prevent heartache in providing for the wellbeing of their beloved relatives.
Unethical Guardians Seize Control of Seniors’ Lives
As a senior citizen myself, I was drawn to an article in the October 9, 2017 issue of The New Yorker magazine written by Rachel Aviv with the title “How the Elderly Lose Their Rights” [https://www.newyorker.com/magazine/2017/10/09/how-the-elderly-lose-their-rights]. This article reveals the aggressive actions of some guardians who actively seek out wards and take control of their lives immediately through surprise visits to their homes. I was shocked to learn how easily these unethical and greedy guardians can take full control of the lives and property of the senior citizens who become their victims.
I also realized that these unethical guardians create another source of risk for hastened death, with the potential to parallel the abuses experienced in some hospices, nursing homes and even hospitals that base health care decisions on quality of life criteria.
How is it possible that senior citizens can be taken from their homes without any apparent legal safeguards?
The answer begins with a plethora of guardians who are willing to abuse the legal provisions that were intended to protect vulnerable senior citizens from abuse. One available legal tool is called an emergency ex-parte petition. An ex-parte petition allows a guardian to appear before a family court judge under an exception to the rule that both parties must be notified of any argument before the judge. The guardian then requests authorization from the judge for a temporary guardianship based on claims of a need for immediate intervention, usually justified with vague and unsubstantiated risks of a medical emergency.
Contributing to the ease of getting agreement from a judge to grant the temporary guardianship order is the ease many guardians have of obtaining cooperation from some medical professionals. Support for claims of a medical emergency may include documents such as “a brief physician’s certificate that contained minimal details and often stated that the ward was too incapacitated to attend a court hearing.”
Once the judge grants the temporary guardianship, the stage is set for the surprise visit to the victim’s home. After the victim is taken from home and placed in some type of senior care facility at the guardian’s discretion, the guardian returns to the family court judge to request that this ward be placed under permanent guardianship. This request is usually granted because the guardian is known to the judge, and the relatives of the victimized senior citizen are not prepared to present a case, and may even be falsely accused by the guardian of abusing the senior citizen who has become the target of guardianship. Attempts to request that a relative be appointed as guardian are complicated by such false accusations against the relatives, and especially if they live out-of-state. Usually, non-residents of a state, even if relatives, are not allowed to become guardians for people living in that state.
Guardians Can Shut Out Relatives and Make All Decisions for Wards, Including Medical Treatment Decisions
The out-of-state issue makes it more appealing to practice unethical guardianship in states that are known to attract senior citizens to retirement communities, such as Nevada, Florida, New Mexico, Arizona, and Texas. Many seniors can be found there who do not have any relatives living in their state of residence.
Regulation of guardianships has not been strengthened or modified in any significant way for many years. Rachel Aviv notes that “in Nevada, as in many states, anyone can become a guardian by taking a course, as long as he or she has not been convicted of a felony or recently declared bankruptcy.” Thus, many of the guardians actually practicing are private guardians operating in the public arena who benefit from the lack of regulations to prevent abuses.
Unfortunately, even having close relatives living nearby is no guarantee that senior citizens will not become targets of unethical guardians. The first example cited by Rachel Aviv was a couple living in Nevada. After the surprise visit by the guardian who forced Rudy and Rennie North to immediately leave their home and be taken to an assisted living facility, their daughter stopped by that afternoon and was surprised to find her parents not at home. She was unable to locate them for a number of days until she returned to her parents’ home and found a note taped to the door with the guardian’s phone number on it.
Meanwhile the guardian had immediately walked through the North’s home with a representative of a company that relocates seniors and sells their belongings at estate sales. The guardian is motivated to generate liquid assets from the victims’ property because those assets are used to pay guardian fees for time spent on the case. These fees are charged at hourly rates of $175 or more, since courts often place no limits on such fees as long as they seem reasonable.
Rachel Aviv noted that an auditor for the guardianship fraud program in Palm BeachCounty stated that in the United States, 1.5 million adults are wards of guardians, either family members or professionals, who control nearly $273 billion dollars in assets.
Under the abuses of guardianship that are taking place, too many senior citizens are becoming victims similar to Rudy and Rennie North. “Owing to age or disability, they had been deemed incompetent, a legal term that describes those who are unable to make reasoned choices about their lives or their property.” Based on such glaring misrepresentations of their medical condition, the guardian was able to obtain “the authority to manage their assets, and to choose where they lived, whom they associated with, and what medical treatment they received. They lost nearly all their civil rights.”
With the guardian controlling decisions about medical treatments, more risks are introduced. Many guardians make these decisions based on quality of life criteria. The results may include overdosing on unneeded drugs, unnecessary weight gain, and other negative health effects that can lead to hastened death. Guardianship abuses create serious risks for freedom of senior citizens to live their lives, enjoy their property, and maintain their health.
Both Caution and Reforms Are Key to Preventing Guardianship Abuses
Caution in dealing with medical professionals is always prudent to avoid any cursory observations being placed in the patient’s medical record that might suggest incompetence in dealing with daily living. Any such comment can be used as justification by an unethical guardian in search of new victims.
With long term persistence from the daughter of Rudy and Rennie North, along with relatives of other victims of unethical guardianships in Nevada, some reforms are coming slowly for guardianships in that state. However, Rachel Aviv’s article describes many attempts at fighting guardianship injustices that reached frustrating dead ends. To put more focus on the problem, Richard Black became the director of a grassroots national organization, Americans Against Abusive Probate Guardianship (aaapg.net), after his father-in-law was placed into guardianship.
The danger of unethical guardianships as a threat to the lives and property of senior citizens cannot be minimized. If you are a senior who is considering moving to the Sunbelt for your golden years, evaluating the risks of guardianship abuse should be a factor in your decision making to relocate.
William Beckman served as Executive Director of the Illinois Right to Life Committee (IRLC) in Chicago from 2001 through 2013. In that role he maintained a website and edited a quarterly newsletter, covering and researching topics on a wide variety of life issues including abortion, contraception, stem cell research, in vitro fertilization, assisted suicide, euthanasia, hospice, brain death, and other end-of-life issues. Mr. Beckman has been involved in the Pro-Life movement since 1974, leading pro-Life activities in his own community, including annual Life Chains and monthly vigils at Planned Parenthood, and serving as Pro-Life coordinator at his church. He has also served on the board of directors of a pregnancy care center since 2000. Mr. Beckman is married to Nancy. They have four grown children and eight grandchildren.
This article reprinted with permission of the author