Beyond Advance Directives - Lessons From the RIALA Conference

On April 26, 2019, Connelly Law Offices was honored to be a presenter at the annual Rhode Island Assisted Living Association (RIALA). RIALA represents the interests of assisted living communities in Rhode Island by advocating for the highest level of independence and quality of life for their residents.

The presentations were professional, informative and thought provoking, covering a multitude of issues faced by Assisted Living Programs. Of special interest to me was a presentation made by representatives from Continuum Hospice and Palliative Care of Rhode Island, but more on that later.

First, let’s look at the issue of dementia and seniors.

As a society, we are becoming more aware of the concept of dementia and not only the effects on the individual but also upon those who care for them. We have come a long way in how we care for those with this disease but we cannot ignore the mistakes we made in the past.

Dementia was documented as far back as ancient Greece, where scholars were resigned to the fact that it was just a part of growing old. The Greek god of old age was Geras, and the more “geras” one acquired, the more fame and courage he was supposed to have, but despite the protection of Geras, people were not immune from cognitive decline.

As the Medieval age arrived, there was little discussion or scientific research

conducted on the problem of senility due to the Church’s influence on the society. However, by the 18th Century, things began to change when the field of anatomical pathology saw a rapid development due to the more widespread acceptance of human body dissection, allowing medical science to view the effects of brain atrophy directly.

Sadly, up until that point, those with dementia were treated in the most horrible and cruel ways, being confined to asylums and often severely abused and even killed. It wasn’t until the 19th Century when a French Doctor named Phillipe Pinal advocated for a more humane treatment for those with this condition.

Then in 1907, a German psychiatrist named Alois Alzheimer identified changes in the brain of patients with dementia, identifying the plaques and tangles which is observed in those with the condition. Although it was a ground-breaking finding at the time, science considered it a rare disease and hung on to the old premise that age-related dementia was the result of stroke and atherosclerosis.

This belief continued into the 1960s when researchers began to see that age-related dementia was a separate entity from normal age-related cognitive decline. Although there was much discussion in the scientific community on whether Alzheimer’s disease and age-related dementia were the same thing, more and more observations showed extensive similarities both clinical and pathological between the two entities.

This led researchers to agree that there was no evidence upon which to base a distinction between the two entities, which were united under the name of “Senile Dementia of the Alzheimer’s type” (today it is more common and indeed more correct to refer to “age-related” instead of “senile”).

Today we know that Alzheimer’s disease is just one type of dementia related to old age, and even if it is the most common type, it is quite rare to identify people with a distinct dementia of the Alzheimer’s type, with most individuals often showing lesions and pathological features typical of different types of dementia such as Dementia with Lewy bodies, Vascular dementia and Frontotemporal dementia.

But despite this knowledge, those with the disease continued to be isolated and treated poorly. It was only some 50 or 60 years ago that those with dementia were still referred to as “feeble-minded” or “morally defective” and locked away in mental institutions.

During my college years, I did a research paper for a geriatric psychology class on dementia and the treatment that was available for patients at the time. The “authority” I used for this paper was my great aunt, Ruth, who had worked for one of the many institutions in New Jersey for those who were diagnosed with “advanced senility”. It was an eye opener for me, especially knowing that such activities were still occurring less than two decades before I wrote the paper.

Initially, she was extremely hesitant about sharing information with me, but as we talked, the walls came tumbling down, as she shared what became an emotional story for her.

“When I started there, I almost quit on my first day, but I needed the job and

couldn’t walkaway from it. The patients there didn’t have there own clothing, everything they wore came from the laundry room in one big pile. We picked up what fit them and dressed them. It was like they had no identity as people, they just existed,” she said.

“The beds were so close together that we couldn’t get in on one side. Moving around for the nurses became a chore so many of them never bothered to provide the care they should have provided.”

But that was just the tip of the iceberg according to Ruth when it came to abuse and neglect of the patients.

“We were called orderlies, there to help with those things the nurses did not have time to do. But what one of my co-workers said was that our job was to keep order any way we needed to. This included keeping many older people restrained in their beds for days at a time, it was disgusting and horrifying.”

“The medical staff on the units actively discouraged visitation by the families for a number of reasons, mostly, I believed, because of the abuse and neglect that they were afraid would be seen,” Ruth continued. “Those families that did visit were usually so horrified by what they saw that guilt set in because of their own inability to care for their loved one at home, so they stayed away. This just added to the abuse that occurred since no one could be held accountable.”

According to her, there was no formal training upon hire and the state requirements for orderlies did not exist, or if they did, she was unaware of them. And when it came to supervision, it only occurred when “something bad happened.”

“I was trained by another orderly who was so negative and nasty that I remembered thinking that my pet dog got better treatment. He would tell me how to twist their wrists in ways to cause them pain but not leave any marks. I left there crying on more than one occasion,” Ruth admitted.

According to Ruth, she grew to hate the patients she cared for, an admission that caused tears to well up in her eyes.

“I’m embarrassed and saddened to even say that. It wasn’t because of them, I knew deep down inside that they were not striking out at me on purpose, but the lack of support for the staff from those who ran the place caused us to feel this way.”

The part of the job she disliked the most was mealtime.

“Because many of the patients were restrained, the nurses had to feed them while they were lying down. We would put their heads on our laps and the nurses would spoon feed them, most of the time not even allowing them to swallow what they had in their mouths. I would look at these old people with food piled high in their mouths, waiting for gravity to take its course. They choked and coughed, sometimes vomited. It was like torture. Not just for the patients but for the staff as well,” she continued.

“But it wasn’t the nurses’ fault. They had a certain amount of time to complete the feeding process and move onto their next task. It was like an assembly line. Those staff who struggled with managing their time received a warning and if it happened a second time, they were fired.”

Before her death, she openly shared more stories with me, seemingly cleansing her soul of the memories of abuse that she had regretted.

One group of people who seemed to fair even worse were African Americans.

Today, we know that Alzheimer’s disease is more prevalent among African-Americans than among whites with estimates ranging from 14% to almost 100% higher. There also appears to be a greater familial risk of Alzheimer’s in African-Americans as genetic and environmental factors work differently to cause Alzheimer’s disease in this group.

In a book written by Rebecca Skloot, she cited the treatment received by African-Americans in the 1960s, focusing on one hospital near Baltimore, where those with dementia were housed with those diagnosed with mental illness, epilepsy, the criminally insane and even sex offenders.

Skloot stated that this hospital had more than 2,700 patients in the 1950s, 800 more than its official maximum capacity. The patients were housed in poorly ventilated cell blocks and windowless basement rooms with drains on the floor instead of toilets.

Those who had beds usually slept two or more to a mattress, lying head to foot. If someone misbehaved, they were tied to their bed or kept in a locked room. Patients were not separated by age, sex or diagnosed condition. In 1948, the only year figures were available, its death rate was far higher than its discharge rate and the hospital averaged only one doctor for every 225 patients.

In last week’s blog, we discussed advanced directives, legal documents that spell out decisions about end-of-life care ahead of time. They convey the individual’s wishes to family, friends, and health care professionals in order to avoid confusion when end of life arrives.

But days after posting that blog, I read an article in the New York Times about

a book written by Katy Butler entitled, The Art of Dying Well: A Practical Guide to a Good End of Life, which hit the shelves this past February.

Ms. Butler shared how her book came about and why, in her mind, advanced directives for those with dementia needed more explanation.

“In the process of researching my new book, The Art of Dying Well, I’ve met many other people who’ve agonized over … micro-decisions, such as whether or not to allow treatment with antibiotics, or a feeding tube, or a trip to the emergency room, for a relative with dementia,” she stated.

According to Butler, she did review the standard Advanced Care Directives and found them lacking as to what she wanted to convey to her loved ones. The way she saw it, it took a cookie cutter approach to the matter, something she did not want.

“If there was one silver lining in my father’s difficult, medically-prolonged decline, it is this - It showed me the havoc dementia can wreak not only on the life of the afflicted person, but on family caregivers. And it encouraged me to think more explicitly about my values and the peculiar moral and medical challenges posed by dementia,” she told the Times.

“At the moment, I’m a fully functioning moral human being, capable of empathy, eager to protect those I love from unnecessary burdens and misery. If I develop dementia —which is, after all, a terminal illness —I may lose that awareness and care only about myself.”

This is something that deeply troubled Butler. Yes, she understood the need for Advance Directives, but she wanted something that conveyed her humanity, her caring for others.

“I have written the following letter —couched in plain, common-sense language, rather than medicalese or legalese — as an amendment to my advance directive. I’ve sent it to everyone who may act as my guardian, caregiver or medical advocate when I can no longer make my own decisions. I want to free them from the burden of future guilt, and that is more important to me than whether or not my letter is legally binding on health care professionals,” she continued.

“I looked at writing it as a sacred and moral act, not as a piece of medical or legal self-defense. I invite you to adapt it to your wishes and hope it brings you the inspiration and peace it has brought to me.

Dear Medical Advocate;

If you’re reading this because I can’t make my own medical decisions due to dementia, please understand I don’t wish to prolong my living or dying, even if I seem relatively happy and content. As a human being who currently has the moral, legal, and intellectual capacity to make my own decisions, I want you to know that I care about the emotional, financial, and practical burdens that dementia and similar illnesses place on those who love me. Once I am demented, I may become oblivious to such concerns. So please let my wishes as stated below guide you. They are designed to give me “comfort care,” let nature take its course, and allow me a natural death.

  • I wish to remove all barriers to a peaceful and timely death.

  • Please ask my medical team to provide Comfort Care Only.

  • Try to qualify me for hospice.

  • I do not wish any attempt at resuscitation. Ask my doctor to sign a Do Not Resuscitate Order and order me a Do Not Resuscitate bracelet from Medic Alert Foundation.

  • Ask my medical team to allow natural death. Do not authorize any medical procedure that might prolong or delay my death.

  • Do not transport me to a hospital. I prefer to die in the place that has become my home.

  • Do not intubate me or give me intravenous fluids. I do not want treatments that may prolong or increase my suffering.

  • Do not treat my infections with antibiotics—give me painkillers instead.

  • Ask my doctor to deactivate all medical devices, such as defibrillators, that may delay death and cause pain.

  • Ask my doctor to deactivate any medical device that might delay death, even those, such as pacemakers, that may improve my comfort.

  • If I’m eating, let me eat what I want, and don’t put me on “thickened liquids,” even if this increases my risk of pneumonia.

  • Do not force or coax me to eat.

  • Do not authorize a feeding tube for me, even on a trial basis. If one is inserted, please ask for its immediate removal.

  • Ask to stop, and do not give permission to start, dialysis.

  • Do not agree to any tests whose results would be meaningless, given my desire to avoid treatments that might be burdensome, agitating, painful, or prolonging of my life or death.

  • Do not give me a flu or other vaccine that might delay my death, unless required to protect others.

  • Do keep me out of physical pain, with opioids if necessary.

  • Ask my doctor to fill out the medical orders known as POLST (Physician Orders for Life Sustaining Treatment) or MOLST (Medical Orders for Life Sustaining Treatment) to confirm the wishes I’ve expressed here.

  • If I must be institutionalized, please do your best to find a place with an art workshop and access to nature, if I can still enjoy them.

“Certainly, there are legal reasons for Advanced Care Directives and the wording that is contained within them,” said Attorney Connelly. “But, writing a document like Ms. Butler did can be a cathartic experience, not only for her, but for her family and caregivers.”

The letter that Ms. Butler wrote is indeed poignant and instructive, but I want to refer back to one piece of the author’s writing, “I’m a fully functioning moral human being, capable of empathy, eager to protect those I love from unnecessary burdens and misery. If I develop dementia…”

What I want to draw our attention to in that statement is the word “if”. Ms. Butler does not have dementia, so “if” is a big word. But what about someone who has been diagnosed with the disease? Just how do they feel about such a discussion?

Just after our blog on the subject of advanced directives, I received a comment

from a friend of Connelly Law Offices, Patti Barr Hagadorn from Fort Wayne, Indiana who wrote, “Jim and I have advanced directives we got them as soon as I got diagnosed”.

As a reminder, a little more than a month ago, we presented the story of Patti and her husband Jim in a blog on early onset dementia (EOD). Patti had been diagnosed with EOD and has been writing a newspaper column for the Fort Wayne Sentinel documenting her decline into the dark world of dementia.

Jim had sent me Patti’s articles which I read and gained a real sense of how she views her decline. Her writings were especially insightful in the context of the book by Katy Butler. What I found were some amazing reflections by Patti, dating back over seven years.

The discussion of Advance Directives and the “medicalese or legalese” content, as Katy Butler called it, I read with interest what Patti wrote. Her words also dove tailed perfectly with the presentation from Continuum Hospice.

Courtney Lamothe, MSW, LCSW, the Director of Program Development and Michele Carignan, Hospital Liaison, presented “Dying: A Human Experience”.

They opened the presentation with a quote from B.J. Miller, a doctor and triple amputee, Working from the vantage point of death as an essential part of life, he is also actively engaged in cultivating a larger dialogue about the universal experience of living and dying.

“There’s nothing inherently medical about dying. It’s much larger than medicine. It’s purely human. Part of that admission is to keep all of this couched in humanity, not medical science, or social science, but really a full arc of humanity. Kindness, total openness, vulnerability, exchange.”

Living and dying, according to Ms. Lamothe, are not total opposites, rather an integral part of living a good life.

“When our needs are threatened, we tend to react from the reptilian part of the lower brain and operate from a fight, flight, or freeze place,” said Lamothe. “[but]… we also need heart! What we so often need is empathy, compassion, authenticity, presence, calmness, communication and reassurance, more so than any medication.”

Michele Carignan, Continuum’s Hospital Liaison, shared a story about a patient she was called into an emergency room to assist with. When she arrived, the medical staff and security were attempting to restrain a man with dementia who had become verbally and physically aggressive.