Category Archives: Living with a Neurological Condition

Brain Support Network volunteer Denise Dagan attended a talk on Thursday by an internist at Stanford on the topic of “Aging at Home with Chronic Illness.”  Denise joked that there was very little about the “at home” part of the topic.  And I’m not even sure there was much about the “chronic illness” part of the topic.  But there was plenty about aging!

These are the top four things that were interesting to Denise in the talk:

1. Even one day of hospitalization can de-condition you and reduce your overall mobility.  Be as mobile as possible while hospitalized.

2. If pain prevents you from exercise, or decreases your mobility, ask your doctor about pain control to allow you consistent activity.  Maintaining mobility is crucial to overall health, both physically and emotionally.  It even helps your bowels move.

3. If you have a skin tear in a spot you can’t reach, or that is not healing, use your local wound care center.  Medicare will cover it, but you may need a referral from your doctor.

4. Incontinence can be both urinary or fecal.  It may be treatable, so don’t just buy diapers.  Ask your doctor if he/she can help.

All of Denise’s notes are copied below.

The one-hour talk with Bryant Lin, MD, Stanford Internal Medicine, on February 9, 2017 was broadcast live over the web.  The recording will be posted in several few weeks to the Stanford Health Library website, healthlibrary.stanford.edu, along with a summary provided by the librarian.  (The video and summaries are posted to the Stanford Health Library News website, shlnews.org.)

Robin

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Denise’s Notes

Stanford Health Library Talk
Speaker:  Bryant Lin, MD, Stanford Internal Medicine
Date:  February 9, 2017

Last night I attended a short talk presented by the Stanford Health Library.  Dr. Bryant Lin was to discuss Aging at Home with Chronic Illness, although he didn’t emphasis the, ‘at home,’ part.  His talk covered all aspects of aging with particular attention to aging with chronic illness because of the magnifying effects of age associated co-morbidities, like diabetes, high blood pressure, heart disease, etc.

I’ve included all my notes because his talk had all good information, but a few things jumped out at me:

1. Even one day of hospitalization can decondition you and reduce your overall mobility.  Be as mobile as possible while hospitalized.

2. If pain prevents you from exercise, or decreases your mobility, ask your doctor about pain control to allow you consistent activity.  Maintaining mobility is crucial to overall health, both physically and emotionally.  It even helps your bowels move.

3. If you have a skin tear in a spot you can’t reach, or that is not healing, use your local wound care center.  Medicare will cover it, but you may need a referral from your doctor.

4. Incontinence can be both urinary or fecal.  It may be treatable, so don’t just buy diapers.  Ask your doctor if he/she can help.

Here are my full notes:

Mobility:
1 of 4 people over age 65 fall every year, and about 10% of those falls results in significant injury.
Falls increase in frequency due to our aging bodies, medication effects, and disease-related symptoms.

Preventing further falls is primarily addressed with physical therapy (PT) to improve strength & balance, and/or occupational therapy (OT) to do a home safety review, recommend assistive devices (canes, walkers, wheelchairs, lifts, and scooters), or teach about transfers (to/from wheelchair).

There are many types of walkers.  Medicare only covers those supplied by approved vendors, which can be a challenge to find, but they do help you pick the right one and show you how to use it properly.  You should like it well enough to USE it.

Some considerations in getting the right one for you:
– It should not be too heavy to lift and should fit in your car easily.
– Fit your walker properly to your height.  Standing straight, the top of it should be at the bend of your wrist.  You should not be leaning over it.
– Grip factors:  Close the right circumference so you don’t grip too hard. The grip should not slip around on the frame of the walker.

Dr. Lin recommended this slide show by the Mayo Clinic: Tips for choosing and using walkers.  See:  www.mayoclinic.org/healthy-lifestyle/healthy-aging/multimedia/walker/sls-20076469

Activity:
– Consistent activity is key to maintaining mobility.  Whatever activity you will DO, and can do safely, is the right activity for you.
– Even one day of hospitalization can decondition you and reduce your overall mobility.  Be as mobile as possible while hospitalized.
– If pain prevents you from exercise, or decreases your mobility, ask your doctor about pain control to allow you consistent activity.
– PT can improve strength and get you back to activity.  Medicare covers PT.   Ask if you qualify for in-home PT.

Memory Loss:
– There are several types of dementia, not just Alzheimer’s.
– Doctor may order blood tests to rule out B12 or folate deficiencies that can look like dementia but are fixable.
– Recent study suggests exercise probably reduces risk and/or delays onset.  Brain training is not determined to prevent or delay dementia.  Constant new mental challenges may prevent or delay, but is impossible to research.

Loneliness & Depression:
– Depression increases the risk of morbidity and use of health resources.  Its easy for your doctor to screen for depression.
– Many treatment options are available: cognitive behavior therapy, as well as several medications.
– Social interaction prevents & improves depression.  So, get out there and be social!

Hearing Loss:
– Treatment should start by removing ear wax.
– The only treatment for hearing loss due to aging is hearing aids.  There is still no solution to the noisy restaurant problem.
– Personal sound amplifier is no different from hearing aid, but much cheaper because only licensed audiologists can sell hearing aids.  They work with bluetooth on your cell phone quite well.  Costco sells more hearing aids than any other source.
[Someone at Stanford did solve the noisy restaurant problem w/3 microphones hanging around the neck, but nobody would use it.]

Vision Issues:
Get annual eye exams, especially if you have optical medical issues, like diabetes, cataracts, glaucoma, or macular degeneration.

Skin Issues:
There are several skin issues common in older people, some more serious than others.  (Dry skin, itching, easy bruising, skin tears, benign growths, skin cancers, and pressure ulcers).
– If you have a skin tear in a spot you can’t reach, or that is not healing, make use of your local wound care center.  For Medicare to cover it, you will need a referral if you belong to a medical group.  If not, just call for an appointment.
– Awareness of how to check for pressure ulcers at home increases prevention and early treatment before they become serious.
– Get regular skin checks for benign growths and skin cancers.

Nutrition Issues:
– Unintentional weight loss should be brought to you doctor’s attention.  It could be something serious.
– Medicare may cover nutrition consult.  A customized nutrition plan may be the best course for you.
– Discuss with your doctor whether you need supplements and/or if you are taking the right one(s).
– Choking or gagging can lead to aspiration pneumonia.  Tell your doctor immediately if this is becoming a problem.

Constipation:
Up to 50% of seniors experience this.  It can be due to slow transport through the gut, difficulty expelling stool, or symptoms like irritable bowel syndrome.  Don’t be embarrassed to tell your doctor and get help.  Bowel obstruction can be dangerous.

First line of treatment is a fiber supplement, plenty of fluids, and MOVE!  Physical activity helps stool move through the bowel.
Laxatives and stool softeners are last.
Probiotics don’t directly treat constipation, but may help over time.  They are difficult to study because there are so many beneficial bacteria.  Yogurt doesn’t hurt most people, so give it a try.

Incontinence:
Can be both urinary or fecal.  It may be treatable, so don’t just buy diapers.  Ask your doctor if he/she can help.

Screening everyone should have for early treatment of disease:
– Diabetes
– Cancer screenings (colon, breast, cervical, lung if smoker)  What age to stop screening?  Talk with your doctor.
– Cardiovascular – blood pressure, lipids
– Osteoporosis
– Hepatitis C – baby boomers & those at high risk
– HPV/HIV

Preventative measures:
– Immunizations (whooping cough, shingles, two types of pneumonia vaccine, annual flu shots)
– Aspirin – For women it is primary prevention for stroke.  For men it is for heart disease.  (If you’ve already had a stroke or heart attack, taking aspirin would be for secondary prevention.)
– Stop smoking
– Moderate alcohol use.  Discuss with your doctor about alcohol use with your current medications.

Suggestions for Prevention Medication Use Interactions:
– Always bring meds to dr. appt. (really, physically!)  This is Dr. Lin’s preferred procedure.
– Review your medication list with your pharmacist.  That’s what they’re there for.
– Ask your doctor if any of your medications can be stopped.  Fewer medications always reduces medication interactions.
– Keep an up-to-date medication list, including supplements & over-the-counter medications, on your person at all times, in case of emergency.  Good policy, but few people do it.
– Ask your doctor if new medications have adverse affects & interactions with others on your list before taking them.
– Ask about alternative medication options.  Doctors are usually choosing one in a class of drugs, so they can be flexible based on cost, or other factors.

Home Safety:
– Remove fall and tripping hazards
– Install hand rails in bathroom (shower, tub, beside the toilet), and in doorways with a step.
– non-slip surfaces (shower & bathroom floor, especially)
– Use a bedside commode if needed due to balance or mobility issues
– Lower your bed or order a hospital bed
– Check for fire hazards, like gas stove tops, especially for those with cognitive issues in the house.  Install a shut-off valve for a gas stove-top and turn it on only when there is responsible supervision of the appliance.  Get an electric kettle.
– Subscribe to a medic-alert system

Driving:
Aging eventually leads to decreased reaction time, decreased visual acuity and can be complicated by a comorbidity like cognitive decline.  When the risk of injury to oneself and others is apparent, family needs to intervene, especially if there have already been accidents or tickets.  There is driving simulation software so you can self-evaluate.  If someone is unwilling to voluntarily stop driving, you can make an anonymous report to DMV or have the family doctor do it.   See:

CA DMV Potentially Unsafe Driver Form (FFDL10):
www.dmv.ca.gov/portal/dmv/?1dmy&urile=wcm:path:/dmv_content_en/dmv/pubs/brochures/fast_facts/ffdl10

We have Lyft and Uber, but you say you don’t use a smart phone.  Check out GoGoGrandparent.com.  For a small fee they have operators available to hook you up with a Lyft or Uber-type ride.  You must create an account to participate.

Hospitalizations & Transitional Care:
If a person is readmitted to the hospital within 30 days, Dr. Lin would determine their transitional care was probably inadequate.  The person being discharged and their primary care giver should have detailed instructions for care at home, follow up instructions, and all support equipment and services should be in place before discharge.  If not, discharge should be delayed until all is in place and everyone involved understands the plan.

Difficulty with Activities of Daily Living (ADL) and Long Term Care (LTC):
– Home Health is assistance with ADL (bathing, dressing, eating).  Providers have limited nursing capability.  It is usually cash pay or LTC insurance.
– Assisted Living facilities come in a WIDE range of services so be careful.  You can get help in choosing between assisted living or managing home health from a geriatric care manager.  Your clinic may have a social worker available.  Stanford offers Adult Aging Services for help with this kind of decision.

End-of Life planning:
Put in place an advance directive designating your healthcare power of attorney (POA) and/or a POLST (Physician Orders for Life-Sustaining Treatment).  Emergency personnel look for POLSTs for specific instructions on resuscitation, comfort care, intubation, etc.

Having an advance directive with a single medical POA (power of attorney) designated can help family discord.  Dr. Lin has seen conflict in families where the POA had several people designated or where there was no POA and everyone felt they needed to speak their mind.  Best practice:  When you put your advance directive in place, tell your family your wishes, whatever they are.

Resources:
Your primary care physician
The Veteran’s Administration
Medicare Nursing Home Compare
Eldercare.gov
Geriatric Care Manager
AARP

Q&A
Audience comment that there are other things that reduce elder quality of life, like elder abuse and scams targeting the elderly.

Insomnia in the elderly is helped by the same good sleep hygiene techniques that help everybody.
– Don’t ignore cues for sleepiness or nap so much during the day you are awake at night.
– Blue light (computer/phone/tablet screens) at bedtime is stimulating because is doesn’t allow proper production of melatonin, making it harder to fall asleep.

Can a geriatric care manager help with family conflict over best decisions for an elderly person?
Yes, but they are not trained specifically for that.  They would probably call a family meeting and provide information so the family can make the best decision together.

The post is from late November 2016 on The Mighty (themighty.com), a website for those facing “disability, disease and mental illness together.”  It’s titled “8 Extraordinary Things You Need to Know About People With Chronic Illness.”  The eight things include:

1. People with chronic illness have a profound strength to manage life while in pain.

2. People with chronic illness tend to have an astute awareness of other people’s pain.

3. People with chronic illness may have a unique perspective on life.

4. People with chronic illness often don’t tell people when they are struggling.

5. People with chronic illness live a secret life of struggling.

6. People with chronic illness need you to check on them.

7. People with chronic illness can fail to follow through on commitments.

8. People with chronic illness need to know they are loved unconditionally, because you cannot place conditions on them.

The author encourages us to tell the people in our life with chronic illness how much we admire them.

Here’s a link to the post:

themighty.com/2016/11/being-sick-and-how-to-be-supportive/

8 Extraordinary Things You Need to Know About People With Chronic Illness
The Mighty
By Christine Carter
November 29, 2016

Robin

This rather frightening Kaiser Health News (khn.org) story from late December 2016 shows that just because a hospital discharge planner gives the family a list of skilled nursing facilities (also called nursing homes), rehab facilities, or home health agencies, the names on that list have likely not been vetted in any way by the hospital.

The woman discussed in the article had undergone hip surgery at California Pacific Medical Center (part of Sutter Health) in San Francisco in 2012.  The hospital encouraged the family to place the woman in skilled nursing facility affiliated with CPMC.  The woman died during a three-week stay at the facility.  The family sued and some parties have settled.

As noted in the article, families should look at Medicare’s Nursing Home Compare tool before making a decision.  The CPMC/Sutter facility where the woman died had a rating of one star out of five, meaning “much below average.”  The facility was closed in 2015.

Recently, a family contacted me with a long list of facilities given to them by the discharge planner.  A quick glance at Nursing Home Compare revealed lots of problems.

Another good resource in California is CANHR, California Advocates for Nursing Home Reform.  They also have ratings on their website.

You can find these rating tools for nursing homes online at:

Nursing Home Compare
medicare.gov/nursinghomecompare

CANHR
canhr.org/NH_Data

Since it seems that hospital discharge planners don’t inform families of these tools, you need to be aware of them and use them.

The article notes:

“The selection of a nursing home can be critical: 39 percent of facilities have been cited by health inspectors over the past three years for harming a patient or operating in such a way that injuries are likely, government records show.” 

And a representative of CANHR had this to say:

“Generally hospitals don’t tell patients or their families much about any kind of patterns of neglect or abuse,” said Michael Connors, who works at California Advocates for Nursing Home Reform, a nonprofit in San Francisco. “Even the worst nursing homes are nearly full because hospitals keep sending patients to them.”

Unfortunately hospitals just want the patients out of the hospital.  It seems there is little concern for what’s next for the patient.

A Brown University professor said “that when his researchers visited 16 hospitals around the country last year, they found that only four gave any quality information to patients selecting a nursing home.”

The article notes:

“Researchers have found that hospital-owned homes are often superior to independent ones. Still, a third of nursing homes owned by hospitals in cities with multiple facilities had lower federal quality ratings than at least one competitor, according to a Kaiser Health News analysis.”

The full article is copied below.

Buyer beware!

Robin

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khn.org/news/when-looking-for-a-nursing-home-your-hospital-may-offer-little-help/

When Looking For A Nursing Home, You May Get Little Help From Your Hospital
Kaiser Health News
By Jordan Rau
December 20, 2016

At age 88, Elizabeth Fee looked pregnant, her belly swollen after days of intestinal ailments and nausea. A nurse heard a scream from Fee’s room in a nursing home, and found her retching “like a faucet” before she passed out.

The facility where she died in 2012 was affiliated with a respected San Francisco hospital, California Pacific Medical Center, and shared its name. Fee had just undergone hip surgery at the hospital, and her family, pleased with her care, said they chose the nursing home with the hospital’s encouragement.

Laura Rees, Fee’s elder daughter, said she was never told that the nursing home had received Medicare’s worst rating for quality — one star. Nor, she said, was she told that state inspectors had repeatedly cited the facility for substandard care, including delayed responses to calls for aid, disrespectful behavior toward patients and displaying insufficient interest in patients’ pain.

“They handed me a piece of paper with a list of the different facilities on it, and theirs were at top of the page,” Rees said in an interview. “They kept pointing to their facility, and I was relying on their expertise and, of course, the reputation of the hospital.”

Fee had an obstructed bowel, and state investigators faulted the home for several lapses in her care related to her death, including giving her inappropriate medications. In court papers defending a lawsuit by Fee’s family, the medical center said the nursing home’s care was diligent. The center declined to discuss the case for this story.

The selection of a nursing home can be critical: 39 percent of facilities have been cited by health inspectors over the past three years for harming a patient or operating in such a way that injuries are likely, government records show.

Yet many case managers at hospitals do not share objective information or their own knowledge about nursing home quality. Some even push their own facilities over comparable or better alternatives.

“Generally hospitals don’t tell patients or their families much about any kind of patterns of neglect or abuse,” said Michael Connors, who works at California Advocates for Nursing Home Reform, a nonprofit in San Francisco. “Even the worst nursing homes are nearly full because hospitals keep sending patients to them.”

Hospitals say their recalcitrance is due to fear about violating a government decree that hospitals may not “specify or otherwise limit” a patient’s choice of facilities. But that rule does not prohibit hospitals from sharing information about quality, and a handful of health systems, such as Partners HealthCare in Massachusetts, have created networks of preferred, higher-quality nursing homes while still giving patients all alternatives.

Such efforts to help patients are rare, said Vincent Mor, a professor of health services, policy and practice at the Brown University School of Public Health in Providence, R.I. He said that when his researchers visited 16 hospitals around the country last year, they found that only four gave any quality information to patients selecting a nursing home.

“They’re giving them a laminated piece of paper” with the names of nearby nursing facilities, Mor said. For quality information, he said, “they will say, ‘Well, maybe you can go to a website,’” such as Nursing Home Compare, where Medicare publishes its quality assessments.

The federal government may change this hands-off approach by requiring hospitals to provide guidance and quality data to patients while still respecting a patient’s preferences. The rule would apply to information not only about nursing homes but also about home health agencies, rehabilitation hospitals and other facilities and services that patients may need after a hospital stay.

“It has a substantial opportunity to make a difference for patients,” said Nancy Foster, a vice president at the American Hospital Association.

But the rule does not spell out what information the hospitals must share, and it has yet to be finalized — more than a year after Medicare proposed it. The rule faces resistance in Congress: The chairman of the House Freedom Caucus, Rep. Mark Meadows, R-N.C., has included it on a list of regulations Republicans should block early next year.

The government has created other incentives for hospitals to make sure their patient placements are good. For instance, Medicare cuts payments to hospitals when too many discharged patients return within a month.

“Hospitals didn’t use to care that much,” said David Grabowski, a professor of health care policy at Harvard Medical School. “They just wanted to get patients out. Now there’s a whole set of payment systems that reward hospitals for good discharges.”

But sometimes hospitals go too far in pushing patients toward their own nursing homes. In 2013, for instance, regulators faulted a Wisconsin hospital for not disclosing its ties when it referred patients to its own nursing home, which Medicare rated below average. In 2014, a family member told inspectors that a Massachusetts hospital had “steered and railroaded” her into sending a relative to a nursing home owned by the same health system.

Researchers have found that hospital-owned homes are often superior to independent ones. Still, a third of nursing homes owned by hospitals in cities with multiple facilities had lower federal quality ratings than at least one competitor, according to a Kaiser Health News analysis.

The Lowest Rating

Medicare’s Nursing Home Compare gave the nursing home where Elizabeth Fee died one star out of five, meaning it was rated “much below average.” The hospital’s case managers told Fee’s family that the nursing home was merely an extension of the hospital and that “my mother would receive the same excellent quality of care and attention,” said Rees, her daughter.

But state inspectors found shortcomings in seven visits to the nursing home between August 2009 and October 2011, records show. Inspectors found expired medications during two visits and, at another, observed a nurse washing only her fingertips after putting an IV in a patient with a communicable infection.

Just four months before Fee arrived, inspectors cited the nursing home for not treating patients with dignity and respect and for failing to provide the best care. One patient told inspectors that her pain was so excruciating that she couldn’t sleep but that nurses and the doctor did not check to see whether her pain medications were working.

“Nobody listens to me,” the patient said. “I was born Catholic, and I know it’s not right to ask to die, but I want to die just to get rid of the pain.”

Fee ate little and had few bowel movements, according to the state health investigation. Fee’s family had hired a private nurse, Angela Cullen, to sit with her. Cullen became increasingly worried about Fee’s distended belly, according to Cullen’s affidavit taken as part of the lawsuit. She said her concerns were brushed off, with one nurse declining to check Fee’s abdomen by saying, “I do not have a stethoscope.”

On the morning of her death, an X-ray indicated Fee might have a bowel obstruction or other problem expelling stool, the inspectors’ report said. That evening, after throwing up a large quantity of matter that smelled of feces, she lost consciousness. She died of too much fluid and inhaled fecal matter in her lungs, the report said.

Bills Of More Than $150,000

An undated photo of Elizabeth Fee as a fashion model. (Robert Durell for KHN)
An undated family photo of Elizabeth Fee as a fashion model. (Robert Durell for KHN)

In a court ruling, Judge Ernest Goldsmith of the San Francisco Superior Court wrote that Elizabeth Fee’s younger daughter, Nancy, “observed her mother drown in what appeared to be her own excrement.” Kathryn Meadows, the family’s attorney, said in a court filing that the nursing home’s bills exceeded $150,000 for the three-week stay.

Sutter Health, the nonprofit that owns the medical center and the nursing home, emphasized in court papers that Elizabeth Fee arrived at the facility with a low count of platelets that clot blood. Sutter’s expert witness argued that the near-daily visits from a physician that Fee received “far exceeds” what is expected in nursing home care.

The physician and his medical group have settled their part of the case and declined to comment or discuss the terms; the case against Sutter is pending. California’s public health department fined Sutter $2,000 for the violations, including for delaying 16 hours in telling the physician about Fee’s nausea, vomiting and swollen abdomen. Last year, Sutter closed the nursing home.

A week or so after Fee died, a letter addressed to her from California Pacific Medical Center arrived at her house. It read: “We would appreciate hearing about your level of satisfaction with the care you received on our Skilled Nursing Rehabilitation Unit, the unit from which you were just discharged.”

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation. Coverage of aging and long-term care issues is supported by The SCAN Foundation.