For Many Patients, Delirium Is A Surprising Side Effect Of Being In The Hospital

Illustration by Olimpia Zagnoli

 

[pullquote] A long hospital stay is considered to be more than 21 days and present the highest risk for experiencing delirium. Symptoms of Post-Traumatic Stress after hospital discharge, like flashbacks and nightmares, have been reported by 1 in 4. [/pullquote]

Sandra G. Boodman of Kaiser Health News begins with the story of B. Paul Turpin, an endocrinologist admitted to the hospital with a very serious infection. During the five months it took him to recover from the infection, 69-year-old Turpin experienced traumatic delusions and hallucinations that were addressed by doctors with increasing doses of sedatives. The sedatives only made it harder for Turpin to regain his orientation on reality. This disorientation did not cease after the infection cleared and Turpin spent the next months in a rehab center to regain his strength. The experience Turpin had is known as delirium; “a sudden disruption of consciousness and cognition marked by vivid hallucinations, delusions and an inability to focus that affects 7 million hospitalized Americans annually

A serious consequence is that delirium seen in hospital patients is misdiagnosed as dementia, primarily adults over the age of 65. Boodman emphasizes that delirium and dementia are different. Delirium is sudden and severity of symptoms can fluctuate in a single day, while dementia is slower and progressively worsens.

What can cause delirium? Heavy sedation over long stays, especially in intensive care units, can more easily trigger delirium. This can require follow up care in nursing homes. Geriatrician and professor of medicine at Harvard Sharon Inouye first encountered delirium as a young doctor in the 1980s while it was still referred to as “ICU psychosis”. Inouye states that “Delirium is very underrecognized and underdiagnosed”. Prevention of delirium is most important because there are few effective treatment options to help orientate an individual once it happens.

The care patients receives is often the primary trigger for delirium. Hospitals are loud, busy, and bright. It may be difficult to maintain a regular sleep schedule and a healthy routine. A long hospital stay is considered to be more than 21 days and present the highest risk for experiencing delirium. Symptoms of Post-Traumatic Stress after hospital discharge, like flashbacks and nightmares, have been reported by 1 in 4. That is nearly the same rate as combat veterans and rape victims.

Non drug interventions were found to be very beneficial in studies. This included installing large clocks for patients to always know what time it was, maintaining healthy sleep schedules, and making sure they had access to their eyeglasses, water, and hearing aids at all times. These small changes reduced delirium by a significant 53%.

Carelessness on the part of physicians may be to blame but can also be remedied by advocating for loved ones and being informed. Boodman shares an anecdote about a mother who was experiencing confusion and was acting “stoned” after a hospital discharge. The physician thought she may be developing dementia. Her daughter, however, insisted the physician comb her mother’s chart. This led to the discovery that an anti-nausea patch had never been removed and, once it was, her mother felt herself soon after. The advocacy work of her daughter was essential to holding physicians accountable and protecting her mother.

Thirteen years ago, Inouye developed a program called HELP, short for Hospital Elder Life Program. It is a team of volunteers that visit patients older than 70 who are staying in the hospital for 48 hours or less and do not show signs of delirium. The intent is to prevent delirium by orientating patients with regular visits. HELP prevented delirium in 96% of patients in a single year at UPMC Shadyside Hospital in Pittsburgh.

 

Legality Surrounding the Choice to VSED

Death and dying feels like a messy matter at times. If we haven’t come to terms with our mortality, how can we even begin to think about and exercise our choices.

It is complicated and often intense to think ahead of time about how we want to die. Considering our choices requires deep introspection. For example, VSED is a complicated choice and it requires sufficient support. First the individual has to determine if it is right for him or her. Then loved ones have to support the individual’s decision. It takes time and effort to communicate with medical and legal people to ensure that everything will be carried out properly.

In this blog, I want to focus on the legal issues. I highly recommend that someone who is considering VSED consults with an elder law attorney. Do this well in advance. Not all elder law attorneys will be comfortable with or knowledgeable about VSED. We were fortunate to have a forward thinking elder law attorney. She knew much more about VSED than an estate planning attorney or a family law attorney.

The elder attorney will draw up documents to ensure that your wishes are followed and are within the realm of the law. In our case, my husband had his Health Directive that was filled out and updated as needed. Because he had Alzheimer’s and was still mentally competent, he filled out the Alzheimer’s Advance Mental Health Directive. This can be found on the End of Life Washington website. It is excellent, and it often requires the assistance of an elder law attorney.

My husband was certain that he wanted to avoid ever living in a dementia facility, but he only had so much control. If he landed in a dementia facility, however, we had already talked about our financial assets with our elder law attorney so that there would be money to take care of him and also money left for me. It can be very complicated. The Alzheimer’s Directive also covers decisions involving day to day choices about where someone would like to be treated and cared for. Different scenarios and options are covered in this fine Directive.

Here is a link to the Alzheimer’s Disease and Dementia Mental Health Advance Directive.

Many people ask me about the legality of VSED. Yes, it is a legal option in the United States. I strongly encourage you to look at the white paper written by Thaddeus Pope and Lindsey Anderson called “Voluntarily  Stopping Eating and Drinking: A Legal Treatment Option at the End of Life. It was this document that convinced my husband to VSED.

Another document that our elder law attorney drew up was a document to eliminate risk to the caregivers, the doctor and myself. I also filled out a similar document. Both were witnessed and notarized.

So, there is lots to think about. I encourage you to read my book, Choosing to Die. All the details are covered in the book. It is both a memoir and a guidebook.

Being An Advocate For VSED For a Loved One

[pullquote]The very good news is that law will uphold a right to VSED in the context of persons stricken with fatal or serious degenerative maladies.[/pullquote]

There will continue to be grey areas and varying perspectives about whether or not a Health Directive, when written when someone is healthy, will hold up and be followed when someone is in the late stages of dementia and is no longer mentally competent. This is a good article exploring this issue. Certainly at this time, I would not rely on a Health Directive to dictate whether or not a person is fed in the late stages of dementia. 

Maybe the issue is bigger and deeper. Maybe the issue is getting clear about the kind of death we want to have. This is something that my husband spent a lot of energy on before he made his decision to voluntarily stop eating and drinking. His demonstration became his legacy to me. It motivated me to look closely at my own thoughts about death and death, and my fears surrounding this. I go into depth of my journey through grief on my website. In my own way, I am already preparing myself emotionally for my death. And I expect to live many more good years! Rather than avoiding this charged issue, I’ve begun to explore it myself. This doesn’t mean that I won’t change my mind. But increasing clarity is bringing me more peace of mind. There are no easy answers. This is deeply personal.

Can the Right to Stop Eating and Drinking be Exercised via a Surrogate Acting Pursuant to an Advance Instruction?

Honoring Dementia Patients In End Of Life

It is challenging to talk about end of life options with someone who already has dementia. If they are in the early to mid stages of dementia and are still mentally competent this article will help guide you to have better conversation with your loved one. Discuss how the person with dementia thinks about death. How do they see themselves passing? If a health directive has not been completed yet, it is essential to do so now. All wishes should be written down so that when the time comes, all of the loved ones and caregivers are on the same page.

Because my husband and I had so much conversation about his end of life choices, he had a peaceful passing.

Because my husband and I had so much conversation about his end of life choices, he had a peaceful passing. He had a thorough health directive at the time of his death. He had the Alzheimer’s Disease and Dementia Advance Directive  (End of Life WA state).  We were well informed. Different states have different requirements for end of life papers. There are many sites that will help you find the right directive for you in your state.

For more explanation and details about my husband’s personal passing the section Alan’s Transition on my website .

How to Talk about End-of-Life Care When a Loved One Has Alzheimer’s Disease

When my husband was diagnosed with Alzheimer’s disease, instead of living into the late stages, he chose to vsed. I was his advocate. We discussed everything. He had excellent support. In order for my husband to have a good quality of death there was a lot to talk about. Being able to comfortably talk about end of life is essential in order to prepare for a good quality of death.. Informing ourselves and others without judgment is key to living a good life and having a good death. Cultivating support systems will help yourself and others.

This article reiterates the difficulty of discussing end of life with someone in every stage of Alzheimer’s disease and how you can try to communicate how they want to leave their body

The Conversation Project is a great resource for end of life preparation and support.

How to Talk about End-of-Life Care When a Loved One Has Alzheimer’s Disease