Monthly Archives: May 2011

Study into use of feeding tubes – surveying families

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Though the two studies mentioned in this post refer to feeding tubes in those with dementia, many issues raised in this email are relevant to those without dementia as well.

Dr. Joan Teno, a community health physician and researcher at Brown University and Dr. Susan Mitchell, of the Hebrew Senior Life Institute for Aging Research, have researched feeding tube decisions over the last several years. Previously they found that “some American hospitals inserted no feeding tubes ­ zero ­ in patients with advanced dementia over an eight-year period while others [inserted feeding tubes in] one in three.” In their 2010 study, they concluded: “Among nursing home residents with advanced cognitive impairment admitted to acute care hospitals, for-profit ownership, larger hospital size, and greater ICU use was associated with increased rates of feeding tube insertion, even after adjusting for patient-level characteristics.”

Wanting to explore the discrepancy in feeding tube placements, these two researchers and a team surveyed family member, after their relatives’ deaths, on decisions they had made regarding feeding tubes. All of the deceased relatives had dementia. The researchers talked to nearly 500 people from five states — MA and MN, where there are low rates of feeding tube use, and AL, FL, and TX, where there are high rates of feeding tube use.

About 10% of the deceased relatives received a feeding tube. The New York Times reports that:

* “Of patients who received feeding tubes, 13.7 percent of family members reported that doctors had inserted the tubes without seeking permission at all.”

* “But even when medical providers raised the issue and a feeding tube was inserted, 12.6 percent of the family respondents said they had felt pressured by the physician to agree to the procedure, and more than half believed that the physician strongly had favored tube insertion.”

* “Moreover, these talks tended to be cursory: More than 40 percent of respondents said the discussion had lasted less than 15 minutes, and roughly a third said no one had mentioned the risks involved.”

* “In the end, about a third of these families said they thought the feeding tube did improve their loved ones’ quality of life, while only 23.4 percent said they regretted the use of the tube.”

Dr. Teno addresses why there’s a push for feeding tubes: “My guess is, we’ve changed hospital medicine to focus on discharge. How do we move someone quickly out of the system? You put the feeding tube in, you send people back to the nursing home.”

Dr. Paula Span, who wrote the New York Times article on the study, believes that the push for feeding tubes results from doctors not wanting to talk about death with their patients.

Here’s a link to the NYT article (with some interesting reader comments posted):
http://newoldage.blogs.nytimes.com/2011 … -in-haste/

And I’ve copied the abstract of the recent article authored by Teno, Mitchell, et al, below as well as their 2010 article on the differences in hospitals’ rates of feeding tube placement.

Robin

Decision-Making and Outcomes of Feeding Tube Insertion: A Five-State Study

Joan M. Teno MD, MS, Susan L. Mitchell MD, MPH, Sylvia K. Kuo PhD, Pedro L. Gozalo PhD, Ramona L. Rhodes MD, MPH, Julie C. Lima PhD, MPH, Vincent Mor PhD

Journal of the American Geriatrics Society, 59. Article first published online: 3 MAY 2011

OBJECTIVES: To examine family member’s perceptions of decision-making and outcomes of feeding tubes.

DESIGN: Mortality follow-back survey. Sample weights were used to account for oversampling and survey design. A multivariate model examined the association between feeding tube use and overall quality of care rating regarding the last week of life.

SETTING: Nursing homes, hospitals, and assisted living facilities.

PARTICIPANTS: Respondents whose relative had died from dementia in five states with varying feeding tube use.

MEASUREMENTS: Respondents were asked about discussions, decision-making, and outcomes related to their loved ones’ feeding problems.

RESULTS: Of 486 family members surveyed, representing 9,652 relatives dying from dementia, 10.8% reported that the decedent had a feeding tube, 17.6% made a decision not to use a feeding tube, and 71.6% reported that there was no decision about feeding tubes. Of respondents for decedents with a feeding tube, 13.7% stated that there was no discussion about feeding tube insertion, and 41.6% reported a discussion that was shorter than 15 minutes. The risks associated with feeding tube insertion were not discussed in one-third of the cases, 51.8% felt that the healthcare provider was strongly in favor of feeding tube insertion, and 12.6% felt pressured by the physician to insert a feeding tube. The decedent was often physically (25.9%) or pharmacologically restrained (29.2%). Respondents whose loved ones died with a feeding tube were less likely to report excellent end-of-life care (adjusted odds ratio=0.42, 95% confidence interval=0.18–0.97) than those who were not.

CONCLUSION: Based on the perceptions of bereaved family members, important opportunities exist to improve decision-making in feeding tube insertion.

PubMed ID#: 21539524 (see pubmed.gov for this abstract only)

Hospital Characteristics Associated With Feeding Tube Placement in Nursing Home Residents With Advanced Cognitive Impairment

Joan M. Teno, MD, MS; Susan L. Mitchell, MD, MPH; Pedro L. Gozalo, PhD; David Dosa, MD, MPH; Amy Hsu, BA; Orna Intrator, PhD; Vincent Mor, PhD
Author Affiliations: Center for Gerontology and Health Care Research, Warren Alpert School of Medicine, Brown University, Providence, Rhode Island (Drs Teno, Gozalo, Dosa, Intrator, and Mor and Ms Hsu); Institute for Aging Research, Hebrew Senior Life, Harvard Medical School, Boston, Massachusetts (Dr Mitchell); and Providence Veterans Affairs Medical Center, Providence, Rhode Island (Drs Dosa and Intrator).

JAMA (Journal of the American Medical Association). 2010;303(6):544-550.

ABSTRACT
Context
Tube-feeding is of questionable benefit for nursing home residents with advanced dementia. Approximately two-thirds of US nursing home residents who are tube fed had their feeding tube inserted during an acute care hospitalization.

Objective
To identify US hospital characteristics associated with higher rates of feeding tube insertion in nursing home residents with advanced cognitive impairment.

Design, Setting, and Patients
The sample included nursing home residents aged 66 years or older with advanced cognitive impairment admitted to acute care hospitals between 2000 and 2007. Rate of feeding tube placement was based on a 20% sample of all Medicare Claims files and was assessed in hospitals with at least 30 such admissions during the 8-year period. A multivariable model with the unit of the analysis being the hospital admission identified hospital-level factors independently associated with feeding tube insertion rates, including bed size, ownership, urban location, and medical school affiliation. Measures of each hospital’s care practices for all patients with serious chronic illnesses were evaluated, including intensive care unit (ICU) use in the last 6 months of life, the use of hospice services, and the ratio of specialist to primary care physicians. Patient-level characteristics were also considered.

Main Outcome Measure
Endoscopic or surgical insertion of a gastrostomy tube during a hospitalization.

Results
In 2797 acute care hospitals with 280 869 admissions among 163 022 nursing home residents with advanced cognitive impairment, the rate of feeding tube insertion varied from 0 to 38.9 per 100 hospitalizations (mean [SD], 6.5 [5.3]; median [interquartile range], 5.3 [2.6-9.3]). The mean rate of feeding tube insertions per 100 admissions was 7.9 in 2000, decreasing to 6.2 in 2007. Higher insertion rates were associated with the following hospital features: for-profit ownership vs government owned (8.5 vs 5.5 insertions per 100 hospitalizations; adjusted odds ratio [AOR], 1.33; 95% confidence interval [CI], 1.21-1.46), larger size (>310 beds vs <101 beds: 8.0 vs 4.3 insertions per 100 hospitalizations; AOR, 1.48; 95% CI, 1.35-1.63), and greater ICU use in the last 6 months of life (highest vs lowest decile: 10.1 vs 2.9 insertions per 100 hospitalizations; AOR, 2.60; 95% CI, 2.20-3.06). These differences persisted after controlling for patient characteristics. Specialist to primary care ratio and hospice use were weakly or not associated with feeding tube placement.

Conclusion
Among nursing home residents with advanced cognitive impairment admitted to acute care hospitals, for-profit ownership, larger hospital size, and greater ICU use was associated with increased rates of feeding tube insertion, even after adjusting for patient-level characteristics.

PubMed ID#: 20145231 (see pubmed.gov for this abstract as well as a link to the full article at no charge)

PSP-related blog post by Florida woman

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Several years ago, I met June Keith through the PSP Forum (forum.psp.org).  June lives in Key West, Florida.  I helped her make arrangements to donate her mother’s brain upon death.  June’s mother Shirley died last year.  PSP was confirmed upon brain autopsy.  Surprisingly, though Shirley was 77 years old, she had no other brain pathologies besides PSP.

This is the first Mother’s Day June is experiencing without her mother.  On her “Postcards from Paradise” blog, June posted today about her mother and PSP.  I’ve copied the full blog post below as well as a link to the blog.  There are several old photos posted to the blog online.

Robin

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juneinparadise.blogspot.com/2011/05/rest-in-peace-mom.html

Postcards from Paradise
a blog by June Keith

Thursday, May 5, 2011

Rest In Peace, Mom

On this Mother’s Day, my first one without my mother, I want to sound an alert in her honor. I want to talk about Progressive Supranuclear Palsy (PSP), the mysterious and cruel illness that tortured and ultimately killed her. PSP is a tragic disease, not only because of its torturous course. It’s also difficult to recognize. Sadly, researchers seem no closer to understanding PSP today than they were when Mom was finally diagnosed in 2007. Its cause remains a mystery.

PSP is a disease of the brain, attacking six people in 100,000. PSP slowly kills off parts of the brain that relate to vision, swallowing, balance and speech. Because it occurs so infrequently, many physicians simply know nothing about it. That was Mom’s case. At first her vision went bad. She lost her ability to do crossword puzzles due to what she described as fuzzy eyesight. She lost her balance and tumbled frequently, seemingly without reason. She could not eat a meal without dropping half of it on the shelf formed by her amble bosom. Her weight skyrocketed as she became increasingly immobile. She also became incontinent, a fact I was to sorrowfully learn on a car trip from Florida to Nova Scotia. It was in Georgia that I pulled off the Interstate to find a drug store and buy her first package of adult diapers. She wore them for the rest of her life.

Yet not one of the many doctors who examined her could find a problem with her health. Yes, she had lost her ability to walk without the aid of a walker. And yes, her vision was strangely off. But she passed every colonoscopy and endoscopy and vision test and cognition test and blood test with flying colors.  She went for nights without sleeping. Dozens of medications were prescribed to help her to sleep. None worked. She became a habitual television watcher, a past-time that she’d long considered to be a big waste of time. She dressed in house dresses and stayed indoors to avoid the embarrassment of falling in public.

As her health continued to fail, with no reason that any medical test or procedure could find, she considered that she was simply wearing out, that she’d burned the candle at both ends for many long years and this was the result of all of that. She’d been a nurse and worked the night shift for 35 years. She worked while her husband and three kids slept because she liked to party by day. She skied in the winter. She beached in the summer.

As her habits began obviously to change, we scolded her for eating too fast, for not taking care of herself, for not exercising. Walk, Mom! Get out and do things, we urged. She said she couldn’t. We thought she was lazy, or depressed. We agonized when the phone rang, expecting the bad news from Sebring, Fla. of another mishap involving Mom, who was supposedly quite healthy.

Claiming that her lovely home had become too big for her to handle, she sold it and bought a tiny trailer in a seniors-only trailer park. She had the floors redone. The walls painted. She bought new kitchen appliances. But it was still a trailer, and we were mystified as to why she chose such a modest dwelling when she could afford so much more.  Then I understood. I observed that when she walked from the living room to her bedroom she used the walls to keep her balance. Everywhere in that trailer she had a place to hold on to, to keep her on her feet.

What was wrong with her? I took her to eye doctors, five total, and not one could find a problem with her eyes. By then she was incapable of reading or writing. In the hospital, after a fall, a nurse asked me “is your mother blind?” We were advised to place her in a nursing home, but she countered that she was healthy. Every test said so. Why would she give up her independence when there was nothing wrong with her? If she fell and broke her neck, so be it.

We hired people to come into her home and clean, cook and take care of her dog. Her condition continued to baffle us, and her. Four uneasy years passed.

One day my husband Michael said “I think I know what’s wrong with your mother.”  He’d read an obituary of a woman who’d died after a courageous struggle with Progressive Supranuclear Palsy. He’d researched the subject and was soon certain that Mom was a victim of PSP.  He was right. She was.

The description of PSP matched mom’s symptoms exactly. We got Mom to a neurologist who confirmed our suspicions. (The first neurologist she saw had insisted she had Alzheimer’s Disease, a diagnosis that in no way matched her symptoms.) The prognosis was ugly and sad. Mom’s main risk factors were falling and choking. PSP patients often died of pneumonia from inhaling food, he said. He also told us that there was nothing to be done. She would die. Slowly.

That was in June, 2007. She died in a nursing home in August, 2010, completely blind, wheelchair bound, and eating a diet of pureed food—the most horrible insult of all, she said. She broke a hip. Then she got pneumonia. She survived all of that and four months later broke her other hip. She died in her sleep, days later, hours after being released from the hospital.

She had a nice nest egg by the time she retired at age 62. She’d carefully saved her money, and even inherited a bit from her own mother, but she died nearly penniless, having spent a fortune on her care during the last five years of her life. Running out of money was a constant fear. And the fear of dying by choking to death was always with her, too, she told me.

I’m telling this story to inform as many people as we possibly can of the disease of PSP. We were surprised and heartbroken at how many medial professionals failed to recognize Mom’s illness. Ultimately it was my husband who diagnosed her, and he is a songwriter.

We donated our mom’s brain to Florida Brain Bank and learned from her autopsy that her disease was definitely PSP with no other disease process. A neurologist in Key West told me that Mom’s was only the fourth case of PSP in his career. He said PSP had probably shortened her life by ten years. She was around 70 when she began her decline. She was 77 when she died.

Others who have died of PSP are Dudley Moore, the actor, and Teresa Brewer, a singer, who died at the same age as Mom. Doubtless there are hundreds of people suffering right now with this strange and hellish illness that goes unrecognized more often than not. Once we knew what Mom was suffering from we hooked up with the PSP forum, where the various features of PSP are discussed daily. It gave us immeasurable relief.

I’m telling this story with the hope that it will help someone, somehow, or some way, to recognize or to manage this particularly horrendous illness that my amazing mother handled with remarkable humor, grace and courage.

Happy Mother’s Day, Mom. Rest in well-deserved peace.

List of PSP-like syndromes

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In a case report* of a 71-year-old Spanish woman with rheumatoid arthritis who developed many PSP symptoms (including vertical gaze palsy), there’s a long list of PSP-like syndromes:

Parkinson’s Disease

Multiple system atrophy

Whipple disease
Creutzfeldt-Jakob disease
Caribbean parkinsonism
Niemann-Pick disease type C
Frontotemporal dementia associated with chromosome 17

Cerebral hemosiderosis

Flunarizine and amiodarone

Corticobasal Degeneration

Cerebral amyloid angiopathy and motor neurone disease
Dementia with Lewy bodies

Prion disease
Lytico-Bodig disease
Cerebral autosomal dominal arteriopathy with subcortical infarcts and leukoencephalopathy
Bilateral hypoxic-eschemic striopallidal lesions
Neurosarcoidosis

Pallidonigroluysian Atrophy

Obstructive hydrocephalus

Clebopride (antidopaminergic drug)
Occupational exposure to lead batteries
Cerebrovascular disease
Neurosyphilis
Intracranial dural arteriovenous fistula

Richardson syndrome

* Neurologist. 2011 May;17(3):136-40.
Rheumatoid meningitis mimicking progressive supranuclear palsy.
Aguilar-Amat MJ, Abenza-Abildúa MJ, Vivancos F, Rodríguez de Rivera FJ, Morales-Bastos C, Gandía-Gonzalez ML, Pérez-Zamarrón A, Arpa J.
Departments of *Neurology †Neuropathology ‡Neurosurgery, La Paz University Hospital, Madrid, Spain.
PMID: 21532380