The Importance of Talking about End-of-Life Issues

This guest post is contributed by Kitty Holman, who writes on the topics of nursing colleges.  She welcomes your comments at her email Id: kitty.holman20@gmail.com.

At some point, each and every one of us will face the end. Some of us are terrified of it. Others of us are comfortable with the knowledge. Some even welcome it. Each of us probably has specific visions regarding how we want the last few years of our lives to be, and some of us even know what to expect after we die.

However, many of our closest family members might not fully understand our desires regarding the end of our life and after. This is exactly why it is important to have a discussion with your family about the end of your life and the final period of time leading up to you. Otherwise, your family will be stressed out with trying to figure out what you most desired. During sad times, this is often too much to handle.

And on the other side of the coin, there is this to consider: many of us will also face that day when one of our loved ones will soon pass. Sooner or later, we will have to broach the issue with our elderly loved one. Although this may be painful to bring up first, it can save your entire family a lot of heart ache as well.

Unfortunately, in both cases, initiating the discussion is almost harder than having the discussion itself. So, how specifically can you talk to your family or loved one about end-of-life issues?

Well, for starters, there is the whole matter of medical care that is extremely important. You should research what sort of options you have as far as how end-of-life care, especially in cases of sickness and hospitalization. The family will need guidance on this matter. Do you or the dying wish to receive hospice care? How should the family approach matters of health should you or your loved one suffer a debilitating stroke? What about matters of dementia or Alzheimer's? Think about some worst case scenarios, if you're comfortable doing so, and then raise the subject with the rest of your family.

Next, you should talk with your family about posthumous desires. How do you or your loved one wish to be memorialized: buried or cremated or some other options? Where do you or your loved one wish for this to occur? If you can, nail down the specifics of the memorial ceremony before it's too late. That way, the entire family can focus on grieving, while a professional handles the administrative aspects of the mourning process. This too will relieve the family of the strain of arguing over how the deceased would wish to be memorialized.

And finally, you should put all your life in order. Keep a file that you can hand to your children that will specific every detail of your life that they will need to know after you have passed. Or, request that your parents create a file for themselves. This, of course, should supplement a will; in this file, for example, keep all of the information about accounts you have: your children will need them to deal with banks, insurance agencies, any online accounts you have (like Facebook), and other things in which you participated. Include instructions to have a certain number of copies of the death certificate handy to pass along to any companies, such as an insurance company, that will need them in order to transfer accounts to the rest of the family. Look into what other specific and administrative responsibilities the family with face and leave them clear instructions.

Ultimately, this is a matter that should be raised earlier, before it's too late. Even though it can be an awkward discussion to have, it can save the rest of the family much more heartache once the grieving process arrives.

So let's consider this: what have you done to open up discussion with a loved one about end-of-life issues? How have you and your family approached this topic so far?

LTC Insurance Paying Claims Now

While many have the notion that long-term care insurance is both unaffordable and also possessed by few people, comes information, be it from the industry trade group, that suggests otherwise.

The American Association for Long-Term Care Insurance reports that the nation's 10 leading long-term care insurance companies paid over $10.8 million in daily claim benefits in 2010.  This supports the fact that people not only have long-term care insurance but are assessing benefits right now.

This represents a 53 percent increase over the daily value of claims paid by the same entities in 2007 according to study findings.  Benefits paid by just leading insurers totaled nearly $4 billion for the year.

The study examined claims-paying data for leading insurers that provide coverage to some 5.76 million individuals.  According to the Association's 2010 LTC Insurance Sourcebook, some 31.0 percent of new individual claims are for home care services, 30.5 percent for assisted living and 38.5 percent for skilled nursing home care.

Some eight million Americans currently own long-term care insurance with about 350,000 new policies sold yearly. More at www.aaltci.org.

New Alzheimer's Studies May Hold Hope But No Cure

According to USA Today two new studies add to scientific efforts to find more accurate ways to determine whether a person's brain is on a path toward Alzheimer's disease.

In the first study, published in the Journal of the American Medical Association (JAMA), older people without dementia whose blood showed lower levels of beta-amyloid 42/40 (proteins) had an increased rate of cognitive decline over nine years. The study found that participants with less education and lower levels of literacy had a stronger association with these biomarker levels. The study involved close to 1,000 participants with an average age of 74. 

The second study, also in JAMA, suggests that a certain type of brain imaging procedure may help detect beta-amyloid in living patients. Researchers used the chemical florbetapir F 18, which binds with beta-amyloid, in conjunction with PET imaging. The images were later compared with the quantity of beta-amyloid in the brain. Beta-amyloid presence can be an indicator for Alzheimer's.

Researchers concluded that "Many conditions can mimic Alzheimer's — thyroid, vitamin deficiencies, depression, rarer dementias. Knowing someone doesn't have amyloid in the brain can help a clinician focus on those other conditions. Adding, "There's still a lot of difficulty in making that connection between an imaging result or a clinical number and the state of the disease."

States Awarded Grants for Background Checks

The Centers for Medicaid and Medicare Services (CMS) has awarded $13 million to six states - Alaska, Conn, Del., Fla., Mo., R.I. - to perform technology-driven background checks for certain long-term care providers.

This is a legislatively mandated Federal program, a part of the Affordable Care Act (ACA). The purpose of the program is to identify efficient, effective and economical procedures for long-term care facilities and providers to conduct background checks on prospective direct care employees. This includes those employed in facilities or who have a contract with a provider that involves one-on-one contact with a patient or resident. States must guarantee non-Federal funds to cover a portion of the cost to conduct the program in their State.

So here's where I am struggling:

• Where will the states obtain the money for their portion of the program? 
• With each state running pilots, who is determining best practices that can eventually be used be all states?
• How will this affect recruitment of staff? 

Make no mistake. We absolutely need these background checks. But they need to able to be done in a consistent and affordable fashion.

For those investigating care for your elderly loved ones, make sure to ask the provider you are investigating whether they perform criminal background checks on employees. And ask what that entails. That can help safeguard you and your loved one.

New Bone Testing Method Can Help Treatment of Osteoporosis

 
A new method for identifying bones at high risk of fracture, and for monitoring the effectiveness of new bone-strengthening drugs and techniques, has been developed by scientists at the University of Cambridge.

The method uses CT Imaging to accurately measure the thickness of the cortical bone, a key indicator of the risk of fracture.

This work is expected to lead to advances in the treatment and management of osteoporosis.


Osteoporosis results thinning of the cortical bone, so that often the remaining bone is no thicker than an eggshell by the time an individual is in their 80s. This thinning can lead to bones that are so weak that a stumble, trip or fall can lead to a fracture. 

Currently, the key technology used to assess a patient's risk of fracture is a bone density test.
 
Utilizing data from a CT scan and a mathematical model of the scanning process, thousands of cortical bone measurements are obtained. This produces 3D thickness maps, which allows the identification of dangerously thin areas.

Is Cognitive Decline Related to Education Level?

The Agency for Healthcare Research and Quality released information in January regarding cognitive disorders in the elderly. Cognitive disorders are conditions that hinder a person's cognitive functioning including reasoning and memory.

In 2007, the percentage of persons age 85 and older reporting one or more cognitive disorders (18.4 percent) was higher than the percentage of persons ages 75- 84 (6.0 percent) and persons ages 65-74 with cognitive disorders (1.1 percent). Interesting but maybe not surprising was how disorders correlated to education level, insurance, and income.

● A higher percentage of elderly persons completing less than 12 years of education reported one or more cognitive disorders (8.6 percent) when compared with elderly persons reporting 12 years of education (4.9 percent) and elderly reporting more than 12 years of education (2.7 percent) in 2007.

● During 2007, the percentage of elderly persons with Medicare and other public insurance reporting one or more cognitive disorders (10.6 percent) was higher than elderly persons with Medicare and any private insurance (4.1 percent) and elderly persons with Medicare only (5.0 percent).

● In 2007, a lower percentage of elderly persons with middle and high income reported one or more cognitive disorders (4.1 percent) than elderly persons that were poor (7.9 percent) or elderly persons that were near poor and had low income (6.7 percent).

In 2007, 5.2 percent of the 38.7 million persons age 65 and older (elderly persons) in the U.S. civilian non-institutionalized population reported having one or more cognitive disorders.

So is education the root cause here? The logic seems to be that better educated people have better jobs and higher income; the ability to afford better insurance and the knowledge to take care of themselves better.

Lotsa Helping Hands Can Do Lotsa Good

In a recent blog I talked about a community service web site called See, Click, Fix. Through their platform, anyone can report and track non-emergency issues anywhere in the world via the internet. In the process this empowers citizens, community groups, media organizations and governments to take care of and improve their neighborhoods. They maintain that citizens who take the time to report even minor issues and see them fixed are likely to get more engaged in their local communities. I blogged that a service like this should be extended to the elderly.

In a limited way, Lotsa Helping Hands seems to do this. It was created to support family caregivers by empowering their family, friends, neighbors, colleagues, and church or synagogue members – what they call a family’s ‘circles of community’ – who are eager to help them as they manage the daily tasks that become a challenge during times of family or medical crisis, caregiver exhaustion, or when caring for an elderly parent.

During their own caregiving experience, the founders saw how earnestly friends wanted to help, and juggling the difficulty of organizing their assistance, they designed Lotsa Helping Hands.

You start by creating a community. Maybe it’s for my mom so I enter Friends Who Want to Help Phil. I then invite people to join the community via email. I start with people who have expressed interest in helping. Next I start posting needs. This may include mom needs dinner on Monday, Wednesday, and Friday nights; or rides to medical appointments on Tuesday mornings. Members are notified by email when new needs are posted. The system sends reminders to volunteers so no one forgets their commitments.

Organizers have designed this not just for the elderly. They suggest organizing volunteers to help a military family during deployment, coordinating meals and childcare for new parents; managing volunteers and events for a school or religious group; or coordinating volunteer activities in your local neighborhood.

Check it out. 

Web Site Seeks to Match Older Workers with Employers

A new web site, Age and Experience is attempting to engage employers to use older people in the workforce. They launched the site because of their frustration with what the perceive happens to workers of a certain age - furloughed, discriminated against, etc. The organizers run their own manufacturing business and employ older workers. This site grew out of their experience.

Age and Experience is a website of America in Recovery, Inc which is a 501(c)3 non-profit corporation and accepts donations. The site connects employers and prospective employees.

It sounds like an interesting idea. If anyone has had experience and more importantly success with the site I would be interested to know.

See Click Fix - An Idea for Aging

See, Click, Fix is an interesting societal experiement that connects citizens to each other and city hall to get things fixed.

Through their platform, anyone can report and track non-emergency issues anywhere in the world via the internet. In the process this empowers citizens, community groups, media organizations and governments to take care of and improve their neighborhoods. They maintain that citizens who take the time to report even minor issues and see them fixed are likely to get more engaged in their local communities.

Citizens report issues on the go, and set up watch areas to monitor their block. For example,

• Neighborhood groups and advocates follow reports of blocked bike lanes, broken windows or idling vehicles.
• Governments watch for potholes and cracked sidewalks, while a police captain can monitor crime issues being reported within his/her precinct.
• Media outlets and local bloggers are the first to know when issues "pop up" in their areas.

In short, you fix a problem by publicly broadcasting the issue to the appropriate parties for resolution, working collectively to raise the profile of key concerns, or by taking direct action.

So why not employ this to the benefit of our elders?

Naturally Occurring Retirement Communities’ (NORC) is a demographic term to describe neighborhoods or buildings in which a large segment of the residents are older adults. They are places where community residents have either aged in place or are the result of significant migrations of older adults into the same neighborhoods, where they intend to spend the rest of their lives. NORCs provide a singular opportunity to deliver targeted health and supportive services cost-effectively. In other words in these NORCs people and communities look out for each other and the elderly.

But this type of aging in place initiative is not everywhere. In fact it is very new and experimental.
So what if there was a See, Click, Fix for our elderly everywhere else?
Someone observes Mrs. Jones shut-in with no one attending to her needs. That person uses the tools to report this to all interested parties and agencies that care about the elderly. One or more respond. Maybe one individual takes her to the doctors. Another does her grocery shopping. An agency finds out about it her before she falls through the cracks and avails her of various senior services.
We all have Mrs. Jones in our neighborhoods.

How can we adapt this for our elders?

Sing a New Song - Songwriters Work Educational Foundation

I came across a great find that might be of interest to you.

Songwriting Works™ Educational Foundation serves hundreds of elders, families and practitioners by pairing professional songwriters with elders to compose original songs. To date, 3,000 participants have composed 300 songs.

In their workshops, participants collaborate with professional songwriters skilled at drawing out their stories, humor, wisdom, imagination, hopes and dreams. This gives voice to those who most acutely need to be seen, heard, honored, and celebrated.

Restore health and community through the power of song is at the heart of the project. You are probably aware of the healing powers of music. This goes one further by involving communities of people, therefore extending the reach outside the walls of adult day, assisted living and nursing facilities. They work with local, regional, and national arts, aging, health and education partners to help our elders maintain and draw out their cognitive abilities.

This group is doing a lot that can enhance the lives of our elders. While their current reach is in the Northwest U.S. they do have some capacity for national programming and expansion.

I am enthused by this program not just because I am a performer for elders but because this is truly unique and gives me hope that there are many individuals and groups who are giving their time, care and love to elders, a group so often dismissed in society.


Adapted from my about.com blog of the same topic.

Exposure to Loud Traffic Noise Can Increase the Risk of Stroke

Exposure to loud traffic noise can increase the risk of stroke in people over the age of 65.  Danish researchers found that for every 10 decibels that noise went up, the risk of stroke went up 14 percent.

Prior studies have linked traffic noise with increased risk of heart attack and other cardiac conditions, but this is the first that associates noise and stroke.

Elderly people might be more at risk due to fragmented sleep patterns. "The mechanisms involved are probably the same mechanisms believed to be involved in noise-induced hypertension and heart attacks, namely that noise acts as a stressor and disturbs sleep, which results in increased blood pressure and heart rate, as well as increased level of stress hormones,” said senior researcher, Dr. Mette Sørensen.

Of course all this makes sense and common sense. Living in the south now, when I actually travel north and start to encounter the noise and congestion of traffic, I know my stress level rises. It would figure that the older you get the more susceptible you would become to being harmed by these stressors.

Aerobic Exercise Can Increase Brain Size

Aerobic exercise can increase the size of the aging brain's hippocampus, the part that houses memory and spatial navigation, researchers report.


Researchers studied 120 older adults (ages 55 to 80) who didn't normally exercise regularly, over the course of a year. Half of the group was assigned to an aerobic exercise program while the other half completed a stretching-and-weights program.

Both groups received MRIs and performed spatial memory exercise. The group that did aerobic exercise for a year saw increases in hippocampus volume, while the stretching-and-weights group saw a decrease in hippocampus volume.

Researchers went on to say that - "Starting an exercise regimen later in life is not futile for either enhancing cognition or augmenting brain volume." The study was published in the journal Proceedings of the National Academy of Sciences.

Hospice Provides Alternative Therapies

Approximately 42% of U.S. hospices are offering alternative therapies such as massages or pet therapy, which are considered “complementary and alternative” therapies that don't fall under the rubric of standard care.

Almost 72% of American hospices that offer alternative therapies now offer massages, while 69% provide support group therapy and 62% offer music therapy, according to data compiled by the Centers for Disease Control and Prevention.

Researchers point out that while these alternative therapies aren't usually covered by insurance, they significantly contribute to the patient's quality of life while calming their anxieties and improving their moods. The CDC study was published in the National Health Statistics Report.

Hospice care is very mis-understood. It is a field of medicine that has moved from the perspective of dying to the perspective of "living" your last days with a good quality of life and with dignity.  Studies have also shown that patents availing themselves of hospice and palliative care, in some cases, actually do live longer than those who do not.

Do your homework in this area especially if a loved one could benefit.

Blood Test for Alzheimer's. Would You Want to Know?

Scientists have developed an antibody-screening blood test that may one day be used to detect diseases such as Alzheimer's. The test allows scientists to identify biomarkers for any disease to which the immune system reacts. Additional testing needs to be conducted before this can be introduced into mainstream medicine.

Independently, investigators at Tufts University asked 1,463 study participants to respond to randomly generated scenarios in which they were asked if they would get a blood test to find out if they had a disease such as Alzheimer's. The scenarios stipulated that the disease was not preventable and that the out-of-pocket fee for the test is high.

Researchers found that the majority of respondents would get the test anyway. Those who did want to know said they'd be more likely to sign up for an advance directive and spend more time with friends and family members.

So would you want the test?

What if the test is wrong?

I believe in advanced directives and spending more time with family and friends. But does knowing translate into the disease and a self-fulfilling prophecy of eventual death?

What do you think?

Source: McKnight's LTC

Physician Compare Now on CMS Site

CMS has released a new resource:  Physician Compare.  It is required by the Affordable Care Act.

The Physician Compare website is designed to people locate health professionals in their communities. 

By simply choosing a zip code and specialty, the website provides contact information for offices, whether the professional speaks a language other than English, and the professional’s gender and educational background.  The tool can also help Medicare beneficiaries identify which physicians participate in the Medicare program.

Other than being a physician locator, it does nothing as yet to address physician quality. That will come I am sure. In the meantime the closest you get to physician quality is by perusing the subjective rate a physician sites that have popped up or going to Health Grades where you can find a bit more information such as all insurances accepted and the results of patient satisfaction surveys. Still subjective but at least provides a bit more information to help you make a decision.

More Young in Nursing Homes

The Associated Press recently published an article about the number of younger people in nursing homes. The numbers are small but it does point to the fact that not all aging services are provided to the aging. An NPR article in December analyzed federal data from the Department of Health and Human Services and found that people ages 31 to 64 now make up 14 percent of the nursing home population.


When a younger resident is in a nursing home, his or her schedule and activities revolves around the interests of the majority in most cases. They get up later. They don’t like bingo. Heck, they wouldn’t like me coming in and singing Sinatra! They eat at different times and prefer different food. Young people have unique and sometimes acute psychological and social needs. And there are generational differences and tensions to boot.

I realize that there have been advances in person-centered care so that no matter what a resident’s age, the care is customized to their situation and interests. But there is a long way to go.
 
Some facilities such as Bayshore Health Center in Duluth, Minn., cited in the article, are adapting. Young people live in private rooms in their own wing. Instead of bingo night, there is poker night. Pizza is served instead of lasagna. And meals are accommodated at preferential times. But let’s face it, these are not the appropriate conditions for young people.

We can debate two things. Should they be there at all? And when they are, shouldn’t their care be different and how?

Jack LaLanne - What Can You Say - Incredible Role Model

Jack LaLanne, the fitness guru died January 23 at age 96.

Lalanne ate healthy and exercised every day of his life up until the end, his agent said.

His advice is timeless:

• "The only way you can hurt the body is not use it,"
• "Inactivity is the killer and, remember, it's never too late." 
• "I never think of my age, never. I could be 20 or 100. I never think about it, I'm just me." 
• Of his fitness regiment he said - "It's a lifestyle, it's something you do the rest of your life."

At 43, he performed more than 1,000 push-ups in 23 minutes on the show "You Asked For It."

At 60, he swam from Alcatraz Island to Fisherman's Wharf in San Francisco - handcuffed, shackled and towing a boat.

Ten years later, he performed a similar feat in Long Beach harbor.

Rest well Jack. And for the rest of us let's heed his advice.

Oxygen Therapy for COPD Has Other Consequences

Individuals on long-term oxygen therapy for chronic obstructive pulmonary disease (COPD) have been found to face greater risk of death from other diseases, according to a new study published in the American Journal of Respiratory and Critical Care Medicine.

Researchers enrolled 7,600 patients who had oxygen therapy and studied them until treatment was suspended or until death—for a median length of 1.7 years. They ultimately found that while the risk of death decreased annually for both respiratory disease (2.7%) and lung cancer (3.4%), there were annual increased risks of circulatory disease (2.8%) and digestive organ disease (7.8%).

Increases in both overall mortality and mortality due to non-respiratory causes is due to coexisting diseases and conditions, and they become more vulnerable with increasing age said researchers.

Bottom line - make sure your doctor is checking for the hidden damage that may result as a result of O2 therapy.

People Aware of LTC Costs but Have No Real Plan to Finance

The Lincoln Financial Life Stages Survey: Long- term care, a survey of 1,002 Americans, was recently released. Most respondents were aware of forecasts predicting a dramatic rise in the number of Americans needing care. Few admitted to being truly prepared. People also understand that costs of care will seriously affect their lifestyles.

• 73 percent said their lifestyles would change if they needed to pay for long-term care services.
• 56 percent said they would be willing to sell their homes to pay for the expenses.
• 21 percent said they would be willing to go into debt.
• 18 percent said they would be willing to declare bankruptcy to qualify for Medicaid.

While two thirds said it was important to plan for long-term care, less than 45 percent had a plan and for those that did, the plan involved simply saving more money.

“The survey shows consumers are not aware of all of the funding options they have to pay for long-term care,” said Mark Konen, president, Retirement Solutions, Lincoln Financial Group. “They want long-term care if it becomes necessary, but they also want to protect their assets if it does not.”

Caregivers have a more realistic view of the situation. Sixty percent said their experience opened their eyes to the true cost of care.

How you personally are preparing for aging or the aging of a loved one?

End of Life Discussions Struck from Legislation

Last year, new Medicare guidelines were proposed that would allow doctors to get reimbursed for holding voluntary end-of-life consultations with patients during annual medical checkups. It would have given specific directions to doctors on what they should tell patients, including discussion of palliative care, hospice and other services.

In early December less specific language watered down advance-care planning to nothing more than having a discussion about advance directives (living wills) that would tell doctors what to do if the patient is too ill to make medical decisions. Now the regulation will delete references to end-of-life planning as part of the annual physical examination.

The government still says you can and should have these discussion; however, it is voluntary. So likely not to happen if there is no reimbursement tied to it.

Well-meaning doctors and hospitals often treat patients aggressively, keeping them hooked up to machines and prolonging life at all costs, including the quality of that life. Some physicians understand the benefit of palliative care and hospice care but many more need to be educated about it.

We have to start having these end of life conversations in order to end life with a quality of life. You might start with questions from Alexandra Drane's and her Engage With Grace: The One Slide Project. She poses five questions that you can answer for yourself online and use to help caregivers get the conversation started with their loved ones.

Adapted from my about.com blog.