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

Illustration by Olimpia Zagnoli

 

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.

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.

 

“Go Wish”: The Game that Sparks Important End-of-Life Discussions

The value of Go Wish lies in the consideration and
conversations that it intends to inspire.

Dr. Jessica Zitter writes about the importance of sharing/teaching end of life information with younger
people. She has started to go into high schools to do this. Whenever I have younger people in my
audiences when I present, I make a point of talking with them afterward. They are quite comfortable
with the information. They don’t want people their families or friends to suffer at the end of life.

Go Wish is a card game that broaches difficult questions about end of life and what is most important to
the participants. Created by the Coda Alliance, a community-based, non-profit organization that
promotes the planning and preparation for the individual’s ideal death, Go Wish has a simple but
effective construct. Each card presents a statement related to end-of- life decisions and it is up to the
individual player to sort it into piles based on importance. For example, statements written on the cards
may include “To have my family with me”, “To have a nurse I feel comfortable with”, “To take care of
unfinished business with my family and friends”. The value of Go Wish lies in the consideration and
conversations that it intends to inspire.

Considering one’s own death is daunting, maybe frightening, and often avoided. However, Go Wish
encourages each participant to reflect on their own priorities and needs, and comfort zones. By openly discussing the topic, the intention is that participants will feel less anxiety having
taken the time to deliberately contemplate and record their most important values at the end of life.
The conversations between family members and friends that follow will ease the minds of those who
may someday be placed in a position to help their loved one at the end of life.

Decks of Go Wish cards are available for purchase (in multiple languages) and to play for free on their
website, www.gowish.org ! When playing the free game alone online, it is even possible to print a copy
of how you sorted each statement by importance. You can then keep it in your personal important files,
and share it with family and friends. Visit their website for testimonials and examples of how to use the
cards to spark conversations about end-of- life decisions, options, and values!

Brittany Maynard’s Widower Continues Fight for Her Legacy.

  Medical aid-in-dying, just as with VSED (Voluntary Stopping and Drinking), is a choice made by those who want to live but instead, after understanding they have no curative options, then choose between two different types of death.  

It was heartwarming to personally talk on the phone with Dan Diaz not too long ago. Both of us are working to uphold the legacy of our loved one who died. Dan’s wife, Brittany, died by taking advantage of the Death With Dignity law. She had to move to Oregon to do this. My husband, chose to VSED (Voluntarily Stop Eating and Drinking) so he did not have to live into the late stages of Alzheimer’s.

Read this article to learn more about Brittany Maynard and Dan Diaz. Brittany was 29 when she was diagnosed with a terminal brain tumor. She had exhausted all of her options for treatment, including an eight8 hour brain surgery. The tumor would not stop growing and she was determined to have six months to live. Brittany and her husband made the choice to move to Oregon where it was legal to experience gentle, medical aid-in-dying. She chose to die on November 1, 2014. Since that day, her husband Dan continues to share his personal story and tirelessly pursues politicians in every state, imploring them to vote in favor of medical aid-in-dying legislation like Death with Dignity. He carries on his late wife’s story so that others may benefit from the same gentle death she experienced.

Dan Diaz makes a point of distinguishing the importance of terminology. This is not “suicide”. Medical aid-in-dying, just as with VSED (Voluntary Stopping and Drinking), is a choice made by those who want to live but instead, after understanding they have no curative options, then choose between two different types of death. Diaz continues his fight to legalize medical aid-in-dying because he wants others to legally have that choice in the face of impossibly difficult decisions.

When New Cancer Treatments Do More Harm Than Good

 Like many people in his shoes, my father opted to try the new drug because he thought it might help. It was expensive, but his insurance would cover it, and the high price seemed to suggest it was special. It was also better than doing nothing.  

Cary Gross, professor and cancer researcher at Yale University School of Medicine,  writes a personal opinion piece for the Washington Post. Gross’ life work is to study whether new cancer treatments that are successful in small trials will be therapeutic in routine clinical practice. His 80-year-old father, diagnosed with Hodgkin’s Disease, was offered and took the opportunity to try a new cancer treatment drug, despite the limited research data available and the high cost.

“Like many people in his shoes, my father opted to try the new drug because he thought it might help. It was expensive, but his insurance would cover it, and the high price seemed to suggest it was special. It was also better than doing nothing.”

Gross’ continues to explain the nuances of cancer treatment drug trials. The Food and Drug Administration approved of this specific treatment with only 100 patients studied. More often than not, these drug trials are also performed on younger, healthier adults whose bodies simply respond differently than one of an 80-year-old. In fact, his father experience further debilitation as a result of the side effects of the new cancer treatment. Unable to walk and bedbound, he was in a rougher shape than when he has started.

Cary Gross explains that the government regulations are about to be loosened by President Trump in order to support pharmaceutical companies.

“The 21st Century Cures Act has already created a pathway for companies to obtain FDA approvals with less rigorous evidence. At the same time, large funders of research that study the safety and effectiveness of drugs, such as the Agency for Healthcare Research and Quality and the Patient-Centered Outcomes Research Institute, face uncertain futures in the current Congress.”

Cary Gross ends by strongly stating that people deserve more treatment options and focus should be placed on creating more possible, available cure for diseases. However, prioritizing research and the effectiveness of such drugs is necessary. Evidence-based treatments must become available so that they no longer do more harm than good.

Training the Next Generation of Doctors in Palliative Care is a Key to the New Era of Value-Based Care

…training physicians in medical school about empathy, prevention and relief of suffering, and personal fears related to mortality, is the most important step to inspiring a shift in society’s perception of palliative care…

Bill Frist, heart and lung transplant surgeon and former US Senator, begins his call to action with the World Health Organization’s definition of Palliative care:

“improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.”

The barriers to societal understanding of palliative care relate largely to the conversations had by lawmakers and health care providers. While the data exists to show that palliative care is effective and saves people money, those who are insured and Medicare beneficiaries are often only afforded the choice between curative care and hospice. Frist argues that important conversations regarding palliative care must be fact-based and refrain from becoming weighted with suspicions about physicians’ morality, “rationing” health care, and other fears about misappropriated “cost-saving”.

As a physician, Frist has developed an understanding of the suffering of patients, especially those afforded limited choices regarding their own pain, life-limiting diagnosis, and death. As a student and practicing physician through the 1980’s, Frist understood that health care had to either be successfully curative or it was a failure. Little to no training was provided then for students to meet the diverse needs and wishes of patients nearing the end of their lives.  Now, Frist states that training physicians in medical school about empathy, prevention and relief of suffering, and personal fears related to mortality, is the most important step to inspiring a shift in society’s perception of palliative care as one important option available for extending quality-of-life.

Death and dying continues to be seen as a big taboo

Acute care remains outrageously and disproportionately the receiver of funding and attention.

Mary O’Hara writes about palliative care specialist BJ Miller and his efforts to promote palliative care in America and Britain.

Miller wants to shift the focus in medicine from strictly managing pain but to also improving quality of life for the patients struggling with an illness, disease or disability. He argues that as humans are living longer with chronic or degenerative diseases “people at the end of their lives often do not have access to the services they need, and with an aging population demand continues to grow.”

Hospitals have been places to keep older or dying individuals and that is simply wrong. “…acute care remains outrageously and disproportionately the receiver of funding and attention.” Our healthcare system is not designed for palliative care. Miller argues that we should “concentrate spending on residential hospices, more home care services, video conferences and teleconferencing to reach people in rural areas. These things exist. They just need to be developed and amplified.” Miller further argues that palliative care can actually be cost-effective. While the article does not site the studies used to determine that statement I have linked several studies that have looked into that question.

To make impactful change more people need to know what palliative care is. People need to understand all the benefits and support that come with it.

Support cost effectiveness of palliative care

Evidence on the cost and cost-effectiveness of palliative care: A literature review

Cost Effectiveness of a Palliative Care Program in a Rural Community Hospital

Cost-Effectiveness of Palliative Care: A Review of the Literature

Palliative Care Consultation Teams Cut Hospital Costs For Medicaid Beneficiaries

Death and dying continues to be seen as a big taboo

“…acute care remains outrageously and disproportionately the receiver of funding and attention.”

Mary O’Hara writes about palliative care specialist BJ Miller and his efforts to promote palliative care in America and Britain.

Miller wants to shift the focus in medicine from strictly managing pain but to also improving quality of life for the patients struggling with an illness, disease or disability. He argues that as humans are living longer with chronic or degenerative diseases “people at the end of their lives often do not have access to the services they need, and with an aging population demand continues to grow.”

Hospitals have been places to keep older or dying individuals and that is simply wrong. “…acute care remains outrageously and disproportionately the receiver of funding and attention.” Our healthcare system is not designed for palliative care. Miller argues that we should “concentrate spending on residential hospices, more home care services, video conferences and teleconferencing to reach people in rural areas. These things exist. They just need to be developed and amplified.” Miller further argues that palliative care can actually be cost-effective. While the article does not site the studies used to determine that statement I have linked several studies that have looked into that question.

To make impactful change more people need to know what palliative care is. People need to understand all the benefits and support that come with it.

Support cost effectiveness of palliative care

Evidence on the cost and cost-effectiveness of palliative care: A literature review

Cost Effectiveness of a Palliative Care Program in a Rural Community Hospital

Cost-Effectiveness of Palliative Care: A Review of the Literature

Palliative Care Consultation Teams Cut Hospital Costs For Medicaid Beneficiaries