Hospice Mystery Solved By Nurse Assistant (Video Story 5:13)

“Little White Box” is a hospice mystery that has been circulating on the Internet for many years. I first posted this video story by Roger Dean Kiser on my blog back in 2007. Recently, after not seeing the video for several years, I read it again, regenerated the same warm feelings, and decided to repost it.

Sometimes a nursing home patient needs someone to solve a special problem. The urgency becomes especially important when the patient is in hospice care, and death is imminent. Perhaps some of you have been in that position before. I know I have.

Without giving away too much information, I’ll just say the story is about an older woman named Mrs. Mathers. Dying in a nursing home, she keeps saying, “Before I die, my little white box, please.” Unfortunately, no one knows exactly what she means. To her rescue comes a caring and determined nurse assistant who successfully solves the mystery. With Celine Dion’s breathtaking singing in the background, reading this story just might grab the handle of your heart and make you smile (or even laugh) at the surprising conclusion. Happy endings! 

This story reminds me of a hospice mystery in my own life as a hospice volunteer. In my “Christmas in May” story, I helped to locate a missing key for a beautiful “musicless” box. You can read that “other worldly” story here. 

"To the world, you may be one person. But, to one person, you may be the world."        Anonymous

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Wayfinding: Dementia, Alzheimer’s Help (Research, Video 1:48)

I continue to be amazed at how many people with or without mental or physical challenges make their way through busy airports in large cities. This kind of spatial problem solving for finding one's way is known as wayfinding. Even the cues to steer one’s way can be confusing. On occasions when I have asked for directions, I found myself thinking of better ways the information could have been conveyed. Signs, maps, and other graphic or audible methods can be very helpful if they are done to meet needs appropriately.

Imagine the frustration of people with dementia struggling to navigate rooms at home or long winding halls of institutions where a dark colored rug can bring the fear of a hole in the floor. After finding the desired locations, they are confronted with additional tasks of what to do and how to do it. Problems with wayfinding are sometimes early symptoms of Alzheimer’s. It’s important that people with Alzheimer’s maintain their independence with wayfinding assistance, especially in large residential environments.

In a research study on wayfinding and Alzheimer’s disease within a virtual

senior residence, the impact of cues was examined with older adults who had normal cognition and those who had Alzheimer’s. Participants were asked to find their way to a location repeatedly in a virtual reality simulation of the senior residence. The two environments consisted of one with wayfinding cues and one without cues. Outcome measures included how often and how quickly participants found the target location in each cue condition. The results of this simulation experience study provide evidence for ways to make the environment more supportive for wayfinding for older adults with Alzheimer's disease.

Wayfinding signs can help people identify objects and find locations. They can be particularly helpful in warning them about dangerous situations and where to locate safety. There are many aids available to assist people with Alzheimer’s. In this video, a person with Alzheimer's explains how signs help him operate more independently in locating his clothes to dress himself.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Cleaning Staff Communication With Dying Patients (Research)

Staff members at some organizations think coworkers on the cleaning staff have no real connection with operational success. It’s little wonder that a cleaning staff person may say in describing his or her job, “Oh, I’m just a custodian,” as if a custodian's contribution is not important in the fulfillment of an organization's mission statement.

A former public school principal, I always emphasized the significance of every employee’s role in the success of our school. Instead of celebrating Secretary’s Day, Teacher Appreciation Week, or Boss's Day, our entire school celebrated Staff Appreciation Week honoring all staff members, including custodians, cafeteria workers, volunteers, and even the street-crossing guard and regular mailperson. We were all valued links in a strong chain in which everybody’s input mattered. This motivated and empowered all of us in achieving our common goal of successfully educating students. This respect for everyone’s line of work became embedded in our school culture.

Healthcare organizations can also benefit from such a culture. This research focuses on hospital cleaning staff communication with seriously ill and dying patients. While communication between these two groups is seldom recognized, many opportunities are presented in hospitals and other healthcare organizations where cleaning staff members interact with patients and cope with their dying and deaths. This research included cleaning staff participants in interviews and a focus group discussion. In addition, managerial cleaning staff participated in a separate focus group. The results are beneficial for care of dying patients.

Some readers may be surprised to know that cleaning staff members described their relationships with patients as meaningful and fulfilling aspects of their work. About half of participants indicated that patients talked with them briefly every day. While conversations were usually casual and about everyday topics, patients also discussed their illnesses and even their future deaths with cleaning staff.

Unfortunately, when patients addressed illness and death, cleaning staff often felt uncomfortable and helpless because they did not know how to respond to patients. Cleaning staff communication with patients could improve if they had some basic training in how to sensitively support patients regarding illness. This kind of information would be helpful to anyone and would certainly enhance hospital and other healthcare cultures in achieving patient-centered care supported by all employees.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Dementia, Prison Health Problems (Research, Video 2:28)

Rapid growth of older adults in America is not only in the general society. America sentences more people in prison than any other country in the world. The number of prisoners from ages 65 and older is growing much faster than the rate of the overall prison population. Longer sentences and increased parole also impact the increasing numbers. These aging prisoners have ongoing health problems such as chronic medical conditions, drug-and alcohol-related diseases, mental and behavioral health issues, and other impairments.

A study examining 22 older adult prisoner health problems among1,026 men was done. Results divided them into four health groups:

1) Relatively healthy (45.1%)

2) Substance users with behavioral health issues (23.4%)

3) Chronic unhealthy with impairments and violence/injury

    (23.6%)

4) Very unhealthy across all domains (7.9%)

Elderly inmates have varied and complex problems that should have ongoing monitoring. This would aid correctional and community health programs in understanding clinical risks, exposures, and health care needs for this population. One major health concern is dementia. Due to the poor health of many prisoners (elevated levels of depression, diabetes, hypertension, HIV, etc.) they have a higher likelihood of getting dementia. This video features a Fishkill Prison near New York. Dr. Joseph Avanzato heads the prison unit for the cognitively impaired inmates.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Becoming Dead Wrong at End of Life (Research, Video 4:10)

“End of life and all my wishes go unheard” may be thoughts of numerous patients who feel their death is being prolonged unnecessarily. One example is the admittance of patients who have Do Not Resuscitate (DNR) status to the intensive care unit (ICU). Many consider this to be a potential misallocation of limited resources to patients who may neither need nor want intensive care. A review of patients who had a valid DNR status at the time they were admitted to an ICU in a single hospital over an eighteen-month period brings more clarity to these situations.

Results indicated that patients who have DNR status and are admitted to the ICU have a higher mortality than other ICU patients. Those who survive have a high likelihood of being discharged to hospice or a post-acute care facility. The value of intensive intervention for these patients is not supported by these results. In addition, only a minority of these patients were seen by palliative care and chaplain teams, services which the literature supports as valuable for DNR patients. This study supports the need for less expensive and less intensive but more appropriate resources for patients and families who have chosen DNR status.

Note: Do Not Resuscitate (DNR) forms are ignored sometimes for several reasons: Advance directives are not available. A healthcare provider simply ignores request. One doctor has a copy, but not another doctor. Ineffective proxies don't speak up and advocate for what the patient wants. Family members disagree and interfere with what patient wants. Administrative errors are in the paperwork. Emergency workers are not aware of DNR documentation patient completed. A patient's zip code, race, age, etc. can even be factors. 

Be sure your advance directives (DNR, etc. forms) are done. Have them entered into all electronic health records. Tell loved ones your wishes, and make sure your proxy and other proactive advocates for you have personal copies to present when needed. When you can't speak for yourself, you need someone to speak up strongly for your rights. 

The following rap video based on “Love the Way You Lie” by Eminem and Rihanna is titled  “Ain’t the Way to Die” with lyrics by ZDoggMD (Dr. Zubin Damania) and Dr. Harry Duh. Among many receiving thanks are the residents and staff of the University of Nevada School of Medicine, along with palliative care, hospice, and end-of-life providers around the world. Lyrics are included below the video.

“Ain’t the Way to Die” 
Lyrics by ZDoggMD (Dr. Zubin Damania) and Dr. Harry Duh

Just gonna stand there and watch me burn.
End of life and all my wishes go unheard.
They just prolong me and don’t ask why.
It’s not right because this ain’t the way to die, ain’t the way to die.

Patient:

I can’t tell you what I really want.
You can only guess what it feels like.
And right now it’s a steel knife in my windpipe.
I can’t breathe but ya still fight ‘cause ya can fight.
Long as the wrong’s done right—protocol’s tight
High off of drugs, try to sedate.
I’m like a pincushion, I hate it, the more I suffer
I suffocate.
And right before I’m about to die, you resuscitate me.
You think you’ve saved me, and I hate it, wait…
Let me go, I’m leaving you—no I ain’t
Tube is out, you put it right back, here we go again
It’s so insane, ’cause though you think it’s good, I’m so in pain
I’m more machine than man now, I’m Anakin
But no advanced directive, I feel so ashamed
And, crap, who’s that nurse? I don’t even know her name
You lay hands on me, to prolong my life again
I guess you must think that this is livin’…

Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s my right to choose the way that I should die

Doctor:

You ever love somebody so much, you can barely see when you with ‘em
That they, lay sick and dying but you just don’t wanna let ‘em?
Be at peace cause you miss ‘em already and they ain’t gone.
Beep beep, the ventilator alarms.
I swore I’d never harm ‘em, never do nothing to hurt ‘em.
Hippocratic oath primum non nocere now I’m forced just to torture ‘em.
They push full code. No one knows what his wishes were.
His sister heard him say once, “I don’t wanna be a vegetable.”
But no one agrees in the family. His caregiver Kate
Wants him comfort care. But Aunt Claire lives so far away
That her guilt eats her like cancer.
So she answers, “Wait! I think he’ll wake!”
Maam, you ain’t even in the state!
Palliate, relieve pain, get him home, explain.
Critical care just hypocritical when it’s so insane.
But they insist I shock his heart again so I persist.
Guess that’s why they say that love is pain.

Just gonna stand there and watch me burn.
End of life and all my wishes go unheard.
They just prolong me and don’t ask why.
It’s my right to choose the way that I should die,
The way that I should die. 

End-of-Life Preferences: Do Doctors and Surrogates Even DiscussThem? Read research about this here.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.
Hospice and Nursing Homes Blog