Literacy Affects Health

Higher Mortality

Low health literacy is significantly associated with higher mortality in patients with heart failure. This is the conclusion drawn by researchers who designed a retrospective study of patients at Kaiser Permanente in Colorado.

They examined cases of heart failure from 2001 to 2008, surveying patients by mail.  The patients were also followed for a median of 1.2 years.  Health literacy was assessed using well-established screening questions and categorized as either “adequate” or “low”.  Then researchers looked at hospitalization and mortality for all causes.

The survey response rate was 72% (1547 of 2156); 17.5% of responders had low health literacy.  Low health literacy was associated with:

• Increased age
• Lower socioeconomic status
• Less likelihood of having at least a high school education
• Higher rates of co-morbidities 

In multivariable Cox regression, low health literacy was independently associated with higher mortality (unadjusted rate, 17.6% vs 6.3%; adjusted hazard ratio, 1.97 [95% confidence interval, 1.3-2.97]; P = .001), but not hospitalization (unadjusted rate, 30.5% vs 23.2%; adjusted hazard ratio, 1.05 [95% confidence interval, 0.8-1.37]; P = .73).

This study was published in the Journal of the American Medical Association (JAMA.  2011; 305(16):1695-701 (ISSN: 1538-3598).

People Want Palliative Care Info

Education Gap

78% of Americans think palliative care and end-of-life treatment should be a part of public discussion, and a whopping 93% believe such decisions should be a top priority for the US healthcare system, according to a survey released this year conducted by the news magazine National Journal and the Regence Foundation.

More than 70% of the respondents agreed with the statement: “It is more important to enhance the quality of life for seriously ill patients, even if it means a shorter life.” While 23% said it was “more important to extend life through every medical intervention possible.” 

Panelists at the health summit at which the data was presented agreed that patients want to make their own decisions.  “It’s really about control,” said John Rother, executive vice president of policy, strategy, and international affairs at AARP.  The survey’s findings suggest many Americans want to better understand what is available to those who have few options left.

Around 23% of those surveyed said they thought the law allows government to make end-of-life decisions for older adults.  Only 40% correctly answered that the law does not include “death panels,” while 36% said they didn’t know.

These results illustrate the huge need for education. Of those surveyed, 54% said their doctor or healthcare provider was the source of information on end-of-life issues, and 75% said they got their information from family and friends.  Only 33% said they trusted politicians and elected officials for accurate information.

Those polled gave the US healthcare system a “C” grade of 5.5 on a scale of 1 to 10.  36% scored the system 7 - 10; 41% rated it 4 - 6; 21% gave scores of 0 - 3.

Pathways has a robust palliative care program under the auspices of our Home Health department.  It is designed for those with serious illness who may still be receiving curative treatment and who may have up to 12 months to live.

More information about this survey can be obtained at: http://www.nationaljournal.com/healthcare/no-death-panels-please-but-poll-shows-americans-can-handle-end-of-life-chat-20110308

Should I Tell My Patient Death Is Imminent?

Does Not Increase Anxiety

When your patient with cancer is terminally ill and you have a good sense of the short prognosis, should you tell him?  It is a well-established practice for American physicians to be forthcoming about prognosis, but not so well established when death is just around the corner.

A study recently published online suggests that keeping the patient fully informed in the final days means that they are more likely to have their preferences met and to die in their preferred place.  Their family members are also more likely to be prepared for the death and to be offered bereavement support.

Researchers in Sweden looked at more than 1,000 cases in which patients were informed of their imminent death and compared this with a similar number who were not informed.  Results showed no differences with regard to pain control, nausea, anxiety, confusion, respiratory tract secretions and other end-of-life symptoms.

“People vary about the extent they want to know the truth, if they want to know at all, and in their understanding of what constitutes telling the truth,” the authors wrote.  But, they concluded, “being informed about imminent death does not lead to more unrelieved pain and anxiety during the last week of life.”

The study concludes that, “providing information of imminent death to a patient with cancer at the end of life does not seem to increase pain or anxiety, but it does seem to be associated with improved care and to increase the likelihood of fulfilling the principles of a good death.”  

The study appears in the Journal of Clinical Oncology, July 2011.

Coffee May Help Depression

You may have read about the benefits of one or two cups of coffee a day: reduced risk of type 2 diabetes, Parkinson’s disease and dementia.  Now it looks as though a little java may also decrease the risk for depression.

“There is certainly much more good news than bad news, in terms of coffee and health,” says Frank Hu, MD, MPH, PhD, nutrition and epidemiology professor at the Harvard School of Public Health.

New research published after a 10-year study of more than 50,000 older women suggest that the risk for depression may decrease as coffee consumption increases.  Those who drank 2-3 cups a day had a 15% decreased risk of depression compared to women who drank one cup a day or less.

“People have often worried that drinking caffeinated coffee might have a bad effect on their health, but there is more and more literature, including this study, showing that caffeine may not have the detrimental effect previously thought,” according to lead author Michel Lucas, PhD, RD, epidemiologist/nutritionist at Harvard School of Public Health in Boston.

The study is published in the September 26 issue of the Archives of Internal Medicine.

How Common Are Medical Errors?

Researchers at the University of Utah led by Dr. David Classen found that about one of every three patients hospitalized in the US will experience some sort of mistake during their stay.  The findings indicate the error rate may be as high as 10 times greater than estimated using older methods. 

“It’s clear that we still have a great deal of work to do in order to achieve a health care system that is consistently high-quality -- that is, safe, effective, patient-centered, efficient, timely, and devoid of disparities based on race or ethnicity,” said Susan Dentzer, editor-in-chief of Health Affairs, a peer-reviewed journal that explores health policy issues of current concern that published the research.

The medical errors found ranged from decubitus ulcers and staph infections to objects left in the body after surgery.  It is estimated that medical errors that cause harm to patients annually cost $17.1 billion in 2008 dollars.

“A key challenge has been agreeing on a yardstick for measuring the safety of care in hospitals,” the researchers wrote.  To find the best yardstick, the team tested three methods of tracking errors on the same set of medical records from three different hospitals.

Among the 795 patient records reviewed, voluntary reporting detected four problems, the Agency for Healthcare Research’s (AHR) quality indicator found 35, and the Institute for Healthcare Improvement’s tool detected 354 events -- 10 times more than AHR’s method.

“Our findings indicate that two methods commonly used by most care delivery organizations and supported by policy makers to measure the safety of care ... fail to detect more than 90% of the adverse events that occur among hospitalized patients,” the team wrote.

The research was supported by the Robert Wood Johnson Foundation, which focuses on U.S. healthcare issues.

Grief and the Holidays

Remembering

With the holidays come reminders of their loss for those who are grieving.  Others are savoring a time of joy, sharing memories, and coming together in love. For those who are grieving, the holidays are a vivid reminder of who is NOT there.

Many grieving people find this the most difficult time of the year.  They cannot forget and cannot bury the pain.  Their hearts, minds and bodies are grieving and not functioning in their full capacities, as though part of them is missing.  These are natural feelings—they are all a part of the process—they can share them, accept them, and feel them.

Ways of Coping

 
As the holidays approach, it may help for those who are grieving to start with a blank slate. Accept that they may not have the energy or desire to accomplish all the things that people have come to expect during the holidays.

Rather than do things automatically, they can discuss and think about what they really want to do, what they don’t want to do, and what will be difficult but they want to try anyway.  Grief experts encourage people not to be afraid to change traditions or start new ones.

Equally important is to acknowledge how one feels.  Many recently bereaved worry they will spoil the holidays for others.  According to families Pathways has counseled, the most painful thing is when they try to keep their feelings inside. 

If friends or family members take the initiative to talk about the person who has died, it relieves the tension and creates an opportunity for sharing. 

Managing Grief

 
While there are no universal methods for healing and coping, there are some concrete things a person can do that may make the holidays easier and provide an opportunity to honor loved ones who have died.  

Grieving families can:

• Acknowledge the grief; accept whatever mood occurs.
• Remember they are not alone.  Attend a remembrance event or grief support group.
• Give themselves permission to let go of certain traditions—it’s okay to make changes.
• Share plans with others; let them know how they can help.
• Reserve time to honor the loved one quietly, alone or with others—light a candle, place a photograph on the table, share memories, or make a memorial donation.

And finally, grieving family members should remember to care for themselves at this time.

Visiting a Friend or Loved One with Dementia

Dementia is a progressive disease that is measured not in months, but in years.  As the disease progresses it may become difficult to visit the patient—he may not recognize you, she may not be able to converse with you, or you don’t know if the person even realizes you are there.

Why Visit?

You may question if there is any reason to visit any more.  With dementia it can be hard to know how to be supportive, especially at the end of life.  

There is a good reason to visit—you can make a difference.  The focus of visits shifts; instead of expecting an exchange of pleasantries, your motivation becomes, “What can I do to improve quality of life?”
 
Your visit really begins with you, at home.  You may want to think about your feelings.  Am I frightened I too will end up with dementia? Am I afraid of the end of life?  What do I want to accomplish in my visit?

Planning the Visit

Visiting a person with dementia can be frustrating and unrewarding when you feel as though there is nothing you can do.  You may be able to make the visit more meaningful with some preparation.

Gather together some supplies so that you are prepared for whatever the situation is when you arrive.  A few ideas are:

• Knitting, a crossword or a book to read if the patient is sleeping
• A picture book with large colorful or interesting images
• Interesting photos someone has sent you in an email
• Music you know the patient likes
• A newspaper column, such as Dear Abby or the sports page to read aloud
• A photo album
• A special memento
• A letter from a mutual friend to share
• A nail file and polish for a manicure
• The patient’s favorite perfume
• A favorite food
• Lotion for a hand or foot massage
• A pet, if allowed

The sky is the limit.  Use your imagination and everything you know about the person to come up with ideas of things to share.  The resident may want to listen to news about her book club, his former poker buddies or the doings at church.

The Visit

Begin with the basics.  The visit will be more successful if the resident is clean and dry, not hungry, and comfortable.  Ask for help if needed.
 
Pain can sometimes appear as negative behavior.  People with dementia may withdraw, strike out or display other “bad” behaviors when in pain.  If you have seen behavior changes that you suspect may be due to discomfort, you may want to ask the caregiver for a trial of pain medicine.

Think about providing comfort through the senses.

Touch

We all need to be touched, but seniors are often deprived of this essential element to wellbeing.

• Our society is youth-centered and may look at wrinkled skin as ugly, not weathered with experience.
• Among hospitalized patients, the only ones touched less than the elderly were people who were psychotic.

Touch can be “instrumental;” that means required to carry out activities such as bathing or dressing.  But research shows that people with dementia can tell the difference between this and “expressive” touch.  Expressive touch is when we hold hands, put an arm around the person, or give a back rub or hug.  This conveys acceptance, nurturing and caring.

Expressive touch helps the elderly feel less isolated, dependent and depressed.

• One researcher found that it also made the toucher feel better.  They felt this non-verbal communication conveyed trust, reassurance, and love, and that it instilled hope.
• Others described touch as making a person feel psychologically worthy and have a sense of being cared for and cared about.
• It is no coincidence that the ultimate form of punishment is solitary confinement—no touching.

Caring touch can trigger the brain to release endorphins and serotonin—natural chemicals that suppress pain and depression.  This is one reason massage can lower the perception of pain.

• Massaging a loved one’s hands or back can help significantly while waiting for pain medicine to work.
• Brushing the resident’s hair and applying lotion have the same affect.

Hearing

We know that hearing seems to remain intact until the very end of life.  This gives us an opportunity for providing comfort.

• Soft music can be very soothing to an agitated resident.
• If the resident has been religious, he may appreciate hearing hymns and spiritual music.  Bring in CDs or tapes of his favorites and a CD player to play them on.
• You can even sing or hum a familiar tune.
• Bring in a music box.

Communication
 
If you are not close, calling residents with Alzheimer’s disease “sweetie,” “dear,” “cookie,” or “honey” may cause more resistance to care.  Experts have known for a long time that mentally competent elderly residents in nursing homes are irritated by being “talked down to.”  Recent research shows people with dementia are more agitated when talked to this way.

What they found was that residents were more resistant if the communication was what they dubbed “elderspeak.”

• Saying things like, “Are we ready for dinner?”  implies that the person isn’t able to act independently.  An alternative would be, “Are you ready for me to help you with your dinner?”
• The tendency of caregivers to use “elderspeak” increases with the caregivers perceived level of infirmity of the resident.
• We need to remember that residents were high functioning adults.  The more we remember their earlier lives, the more we respect them as people than as a disease.

Just chatting can be very reassuring.  “I spoke with Michael today, back in Virginia.  He says he and Alice are going to take a trip to Vermont.  They are going as soon as the snow melts.  It’s February now, so it may be a couple of months.”

Maintain the resident’s dignity in small ways: use terms like “disposable briefs” instead of “diapers.”  Remember to speak slowly.  People with dementia take longer to process what you have said.
 
Sense of Smell

This sense is so basic that when we smell a certain odor, it can bring back memories from decades ago.

• Aromatherapy takes advantage of this by providing pleasant smells that might bring back pleasant memories.
• Bring a rose, a lavender sachet, or a scented candle that smells like pumpkin or apple pie.
• A favorite perfume or aftershave can brighten spirits.

Taste

• Bring in a favorite food or drink.  The resident may love Fritos or M&Ms and they won’t be on the menu in assisted living.
• Cleaning the mouth with minty toothpaste or mouthwash on a 4x4 may be refreshing.

We have to be very careful about anything in the mouth at the end of life.  With dementia, all the muscles get weaker and weaker—including the muscles for swallowing. 

• Food or fluids can easily get into the airway, causing aspiration pneumonia.

Textures

• A resident in a facility has little chance to experience unusual textures, such as soft fur or a smooth, cool stone.  A pet or even a stuffed animal may provide comfort.
• Wrapping someone’s hands or feet in a hot, wet towel might feel very soothing and relaxing—the spa treatment!
• Find a way to warm a flannel blanket to wrap the resident in.
• Smooth the sheets or put cool, clean sheets on.  Change the pillow case or turn over the pillow.
• Open a window to feel a breeze.

Imagination

Use your imagination.  Think about what would bring you comfort.  What would feel good to you?  For each visit plan a simple, new, creative way to bring pleasure, serenity or comfort.  Quality of life will improve for both of you.

Want to Learn More?

Visit our website's Caregiver Resource page for more information and helpful hints when caring for a friend or loved one with dementia.