Monday, April 29, 2013

Immigrants to the US and Social Security: Ripe for Ageism and Disabilty Bias

New America Media reveals a new version of Old Bias:

SAN FRANCISCO--As the debate over immigration reform tugs predictably back in Washington, an undercurrent of ageism and disability bias has been flowing beneath more obvious racial and class implications.

Take, for instance, the recent USA Today op-ed co-authored by former U.S. Sen. Jim DeMint, R-S.C., now president of the conservative Heritage Foundation, which warned, “The truly enormous costs come when unauthorized immigrants start collecting retirement benefits.”

DeMint and his colleague continued, “Social Security, Medicare, food stamps and other entitlement programs already impose huge, unfunded liabilities on taxpayers.” The op-ed goes on to declare that “an amnesty” proposed for 11 million unauthorized immigrants will add significant taxpayer costs because unauthorized immigrants average only a 10th-grade education.

Doing the Right Thing


Rather than being a burden, however, according to the Social Security Administration’s chief actuary, those presumed drains on the system have been a boon. They add $15 billion a year to Social Security in payroll taxes, only taking out $1billion annually in benefits. In the long term, immigration reform would modestly cut Social Security’s deficit, not worsen it.

According to Pew Research, that’s partly because of future rising income and home ownership levels for those immigrants’ children.

“Those opposed to immigration reform have attempted to use vital programs, like Social Security, as an economic excuse to avoid doing the right thing,” said Max Richtman, president and CEO of the National Committee to Preserve Social Security and Medicare (NCPSSM).

In a policy brief last week, NCPSSM cited Edward Alden of the Council on Foreign Relations, who has said that immigration reform would actually lead to higher wages and allow immigrants to pay more towards Social Security.

"They’re going to pay more into the Social Security system. The CBO has run these numbers in the past, in the short-run there’s a big boost for the Social Security system," Alden said

White House and Senate ‘Roadmaps’

According to a new policy analysis by the National Hispanic Council on Aging (NHCOA) and National Council on Aging (NCOA), today’s approximately 11 million unauthorized immigrants include 1.3 million individuals ages 45-54, and another half million who are 55 and older.

NHCOA’s Jason Coates and NCOA policy analyst Joe Caldwell examined “roadmaps” to citizenship outlined so far by the White House and the Senate’s bipartisan “Gang of Eight,” with legislation to come in a few months.

Both proposals signal long waits before eligible immigrants could even apply for lawful permanent resident status (green cards) and citizenship. And their access to health care and economic security benefits, especially important to elders and those with disabilities, is in doubt.

Under the current proposals, unauthorized immigrants could end up waiting a decade or more to qualify for health care and other safety-net programs.

While the Senate plan would link the waiting period for being able to apply for green cards to some assurance of border security, the White House has proposed allowing undocumented immigrants provisional status for six-to-eight years before they could become permanent residents. (Both the administration and Senate frameworks would expedite the process for “DREAMers,” agricultural workers, and highly skilled immigrants with advanced degrees in such areas as science and technology.)

Once an immigrant waited through those years on provisional, or temporary status and qualified for a permanent status (the green card), he or she would begin the five-year process toward naturalization. During that time, the White House and Senate proposals would deny them access to federal benefits, such as Medicaid, Supplemental Security Income and the Supplemental Nutrition Assistance Program (food stamps). President Obama’s proposal would deny access to subsidies under the Affordable Care Act. People could have to wait more than a decade for assistance.

Older adults would also have to wait that long to access Medicaid, which is the primary payer of long-term care in the U.S. States can waive the five-year waiting period normally required once someone becomes a permanent resident, but only for pregnant women and children, not for individuals with disabilities or seniors.

Statistics show that six-in-ten undocumented Hispanics is without health insurance.

They would also have to wait another five years -- that is about a decade after starting on the path to citizenship -- to qualify for federal Medicare.

Many of those 11 million undocumented people are overrepresented in low-paying and often physically demanding occupations, frequently incurring high rates of work-related injuries, and contributing to high rates of disability and chronic conditions over time.

Looming Shortage of Care Workers

The NHCOA-NCOA report also calls on the government to strengthen and stabilize the shrinking direct-care workforce, such as the nursing aides who assist patients with such crucial daily activities as getting dressed, taking medication, preparing meals and managing money.

The advocacy groups say reforms should afford these workers the same streamlined and expedited visa process as those proposed for scientists, engineers and workers in other high-need areas, because the nation is facing a looming shortage of care workers.

The paper explains that as the U.S. population ages, U.S. demand for long-term care will leap from today’s 12 million to 27 million by 2050. The country will need 1.6 million additional direct-care workers by 2020 and 3 million by 2030.

Immigration reform is vital for meeting that projected need, say NHCOA and NCOA, because almost one in four current direct-care workers is foreign born. About half today are naturalized citizens and others have legal status, “but a significant portion is estimated to be unauthorized.”

Policy changes offering these workers authorized immigration status would improve the quality of care, says the paper, by allowing for improved background checks, providing workers opportunities for training and career advancement, building registries to assist individuals and find workers, and enabling workers to legally drive.

“Comprehensive immigration reform will help millions come out of the shadows. Many of the half million older adult immigrants [among them] have worked for decades and contributed millions to Social Security,” said NHCOA’s Jason Coates. Rather than begrudging them income and health security protections they have earned, he added, “We should reward their contributions to the to the United States.”

Tuesday, April 23, 2013

Global Action on Aging salutes NY Times for "Older, and Unafraid to Talk About It," (April 22, 2013)

Older, and Unafraid to Talk About It


Aging can be difficult, bringing along new challenges of declining health, loneliness and changes in lifestyles. More and more seniors are using therapists to help them cope with these changes. Here, three seniors speak about beginning to see a therapist later in life.

Oscar Hidalgo for The New York Times

Judita Grosz, 69

Finally Finding Herself
“Therapy has unlocked a lot of things that I never thought would have unfolded for me at this time in my life. I have learned to be more open with myself and others about who I am and what I am, and I've learned that I'm a fabulous person, which I did not know till now.”
Michael Kirby Smith for The New York Times

Marvin Tolkin, 86

Aging Is the Problem
“You can't do the things you used to do. You can't go where you wanted. People look at you differently. What psychiatry does is help you go through the problems and adjust your thinking.”
Oscar Hidalgo for The New York Times

Miriam Zatinsky, 87

“I always said that I would never be old, but I changed my mind when I got here. Because I'm surrounded by people who are old, and I had to come to grips with that.”

Wednesday, April 17, 2013

Aging in Prison

Recently I attended the monthly general meeting of the New York NGO Committee on Ageing. The topic was “Aging in Prison – a Human Rights Issue.” Two academics who have specialized on treatment of US prisoners presented some of their research. They were:

Tina Maschi, PhD, LCSW, ACSW, who is now Associate Professor at Fordham University Graduate School of Social Services (FUGGS); she’s also a Social Fellow at the New York Academy of Medicine, a Research Scholar at the Ravazzin Center on Aging, and Coordinator for the FUGGS Human Rights and Social Justice sequence. The second speaker, Deborah Viola, PhD., is Associate Professor and Associate Director, Doctoral Program, Department of Health Policy & Management at New York Medical College, and Research Scholar at the Center for Long Term Care Research & Policy.

General Facts
The US population makes up about 5 percent of the world’s population. About 10 million people are imprisoned world-wide. Surprisingly, 25 percent of those are “doing time” are held in US prisons. Among them, 16 percent of the 10 million are 60 years and older. The US exceeds all nations in the number of old people incarcerated in its prisons. At present, the older population is the most rapidly growing group in US prisons. In fact, the number of older prisoners is growing faster than the number of older persons in the US population. In the US, 756 human beings out of every 100.000 people are incarcerated.





Why are there so many people in US prisons?
One would think since the US has the largest prison population in the world that the nation must be home to very dangerous criminals who everyone would agree are “bad” people. But wait a minute, are they?

About three decades ago the US introduced a “tough on crime” policy. State and federal legislators adopted laws that increased the likelihood and length of prison sentences, by including mandatory minimum sentences and three strikes laws. It seems a bit strange that while the crime rate had declined since the 1980's; nevertheless the US prison population grew six-fold.

It is very interesting that the US has privately owned prisons. The two largest private prison companies combined to bring in close to $3,000, 000, 000 in revenue in 2010. Earlier in the 1980's, there were no privately owned prisons in the US. Since then the number of incarcerated people has exploded. It does not take a genius to see what is going on here.

Last year the largest private prison in the US, Corrections Corporation of America (CCA), received $ 74 million of taxpayers’ money to run immigration detention centers. There are numerous reports on human rights’ abuses in these private prisons. For example, when auditors visited one private prison in Texas, they “got so much fecal matter on their shoes they had to wipe their feet off on the grass outside.” The prisoners were literally living in their own excrement. To make a phone call to a lawyer or loved ones, the CCA charges its inmates $ 5 per minute, yet the prison only pays inmates who work at the facility $1 per day. To me, it looks like the more people the “justice system” can put behind bars, the more money the private prisons will make.

A lot of people go to US prisons because of drug crimes. Examining who actually goes to prison because of a drug crime speaks very loud. About 14 million whites and 2.6 million Afro-Americans report using an illicit drug. While five times as many whites are using drugs as African Americans, yet African Americas are sent to prison for drug offenses at 10 times the rate of whites. African Americans serve virtually as much time in prison for a drug offense (58.7 months) as whites do for a violent offense (61.7 months). Surely this is not “equal treatment under the law.” One out of every 12 Afro-American men of working age is in prison. These statistics tell us that if you commit a drug crime and are not white, you will go to prison. If you are white, it is considered a public health problem.




What are the problems facing an older population behind bars?
Prisons in general are designed for the young and able-bodied. For example, when people grow older they have different medical and health needs than the young. Older persons are more likely to develop disabilities that require the use of assistive devices such as glasses, hearing aids, wheelchairs, walkers and canes. As in the community, the elderly in prison suffer from falls, which contribute to hip fractures and high health costs. Even if these conditions are provided for, many elder inmates are confined in facilities that cannot meet the structural or programmatic needs of mobility-impaired persons. Because of their higher rates of illness and impairments, older prisoners incur medical costs that are three to nine times higher than those of younger prisoners. In general a younger prisoner costs about $22.000 per year while an older person can cost as much as $65,000 per year.

It is also documented that the older prisoners “age” about 15 years faster than people who are not incarcerated.

Sooner or later, one of two things will happen to an aging prisoner. Either he/she will die in prison, or will be released. Neither of these alternatives has gained that much attention. Reentry into society is very difficult for any former prisoner. Older persons face additional challenges. Older women and men find it extremely hard to find work, housing and transportation, as well as necessary medical and mental healthcare. Some have the assistance from former friends and family, but many have lost contact with their families because of the length of time incarcerated or the nature of their crimes.

As the number of older prisoners increases, so too does the number of men and women dying of natural causes behind bars.

For references and more information please visit:
Human Rights Watch's report “Old Behind Bars

Sanna Klemetti
s.klemetti@globalaging.org


Monday, April 15, 2013

Seniors! Are you taking one of the 110 most dangerous drugs for older people? Want to know? Read further!

The April 15, 2013, New York Times reports that US medical doctors are routinely prescribing drugs that can be harmful to older patients.  Medicare recipients in the US South are getting prescriptions that can hurt them seriously.  Apparently one in five older persons living in the South are taking drugs that are dangerous. Other US regions have fewer seniors who are taking such drugs regularly.

Are the patients poor? Do they lack education? Have unqualified doctors?  Are they persons of color? Researchers say that poor people are more likely to be taking these drugs.  As socioeconomic status declined, for example, the likelihood of being prescribed a high-risk drug increases.

New York Times reporters drew much of their information from medical experts who published their findings in the latest issue of The Journal of General Internal Medicine. "For the study, they referred to a list of 110 drugs to avoid in the elderly, compiled by the National Committee for Quality Assurance. Many of these drugs are widely used, often with few or moderate side effects in younger patients.  However, risks get bigger among elders.

On the list are anti-anxiety medications like Valium. This drug can be harder for older patients to metabolize.  It stays in the system and "can lead to prolonged sedation, and in turn potentially deadly falls and fractures." Several muscle relaxants and diabetes medications can also remain in elderly patients’ bodies for longer periods, causing complications.

Researchers examined records of more than six million older men and women in the US enrolled in Medicare Advantage plans. "Over all, they found that 1.3 million of those seniors, or roughly one in five, had been prescribed at least one high-risk medication in 2009 even though many of the drugs were available in safer versions. About 5 percent of the seniors in the study had been prescribed at least two medications from the list," the NY Times reports.

Using many medications, known as "polypharmacy," is a growing problem among seniors. Researchers found that the "average person over 65 takes at least four prescription drugs — a practice that can lead to dangerous and unexpected interactions."  Taking many drugs is creating a serious public health problem. . . and it affects seniors more than anyone else.

What drugs are you taking?  Check out their safety.  Now!

What can you do?  Talk to your doctor and your pharmacist to find out about the drugs that you are taking.  Are they safe?  What is their record?  If these resources are too busy to tell you, reporters  suggest using the internet to query the records and warnings of medications you are taking.

Protect yourself.

Susanne Paul for Global Action on Aging


Wednesday, April 10, 2013

How Does Depression Wreck Your Life?

All too often stereotypes cast older persons as “grumpy.” Many people think that being down and depressed is normal in old age. Attention!
It is NOT a natural part of aging. 

Depression can happen to anyone at any age and is common among older adults and seniors. Some 15 out of 100 adults over the age of 65 suffer from depression in the US. Who are these older adults and why do so many of them suffering from depression? Studies show that the disorder affects people in nursing homes and hospitals in even greater numbers. Recognizing depression among old persons is not always easy. Depressed elders may find it difficult to describe their feelings. Many fear revealing their sadness since they may associate it with being “crazy” or lacking self-control. In the youth of today’s elders, they learned that depression often was associated with being “crazy” or weak-minded. Today, we know hat depression is a fully treatable medical or biological illness.



The Movie Grumpy Old Men


Aging, HIV and Depression
Experts have discovered a link between HIV-positive older adults and depression. To find out more about this development, I met up with Stephen Karpiak to talk about HIV positive older adults and seniors. A PhD, Karpiak joined ACRIA (AIDS Community Research of America) in 2002, as Assistant Director of Research. He served as primary investigator at the agency's new behavioral research effort, including conducting groundbreaking Research on Older Adults with HIV(ROAH) study. Earlier, he had worked for over 20 years at Columbia University's Medical School as a research scientist in neurobiology and immunology. Karpiak also started a Phoenix, Arizona, project to provide housing for homeless people living with HIV/AIDS. Dr. Karpiak has documented over 250 articles in scientific journals and books, and has been holding lectures all over the world.

 Dr. Karpiak

Karpiak told me that the ROAH goal focused on understanding the situation of those over the age of 50 who are living with HIV. ROAH sought answers to identify their psycho-social needs and determine how to support them most effectively to live longer, healthier and happier lives. ROAH assessed a 1,000-person cohort in New York City, examining a comprehensive array of issues, including health status, stigma, depression, social networks, spirituality, sexual behavior, and substance abuse.

ROAH showed that stigma, isolation and depression are the major problems for this group. The stigma against HIV/AIDS and is usually associated with homophobia, racism, ageism, etc.

ROAH demonstrated that by repressing the immune system, depression may render people more vulnerable to infectious diseases. Stress and depression have a harmful effect on cellular immunity, including those aspects of the immune system affected by HIV. Body cell mass depletion is associated with significant increase in fatigue, global distress and depressive symptoms, and reduced life satisfaction. Elevated symptoms of depression associated with a faster progression to AIDS and a higher risk of mortality.

Stigma often leads to isolation, depression and loneliness. Older HIV positive adults who are depressed are more likely to have financial problems, have fewer people to turn to for support, lack critical HIV-related information, live alone, have thoughts of suicide, and experience greater levels of stigma related to HIV and aging as compared to older adults who are not depressed. Depression may also stop persons from getting treated, avoiding doctor visits, social activities and other relationships. ROAH found that aging HIV-positive adults experience significant levels of depression, at a rate at least five times higher than the general New York City population.


Dr. Karpiak and Sanna Klemetti

Solutions?
I asked Dr. Karpiak what has or can be done about this situation. As a matter of fact, successful projects exist. One example is the MacArthur Foundation Model that expects participants to make one phone call every week to ask the HIV affected person how he/she is doing. The effect of this simple and effective program has been great. Another ACRIA project is The Go 4 Part Program, funded by Mac AIDS fund. It's a two day HIV – aging training program. Around 25 educators visit about two cities per year, to bring AIDS, health and aging organizations together to educate them about these issues. They also introduce ideas on how to reduce the problems. They usually invite one person from the meetings to New York to see the work carried out at ACRIA.

More about ROAH

Sanna Klemetti
s.klemetti@globalaging.org

Will President Obama sell Out US Seniors and our children for a Deal with the Republicans?

Salivating Over Social Security Cuts

Dear Global Action on Aging Friends,

Wherever you live, please note the very real possibility that President Obama will seriously weaken or even destroy the Social Security Program for a "deal" with Republicans over the US Budget.  Not only will such action undercut the modest living standard of US elders but it also threatens young workers who have contributed to the program since they entered the workforce. 

Mind you, US citizens have already seen the Federal Government "borrow" from Social Security to support other programs--and failed to re-pay the debt.  Read excerpts from Robert Reich's Blog (April 10, 2013) for the full story:

ohn Boehner, Speaker of the House, revealed why it's politically naive for the President to offer up cuts in Social Security in the hope of getting Republicans to close some tax loopholes for the rich. "If the President believes these modest entitlement savings are needed to help shore up these programs, there's no reason they should be held hostage for more tax hikes,” Boehner said in a statement released Friday.
House Majority Leader Eric Cantor agreed. He said on CNBC he didn't understand "why we just don't see the White House come forward and do the things that we agree on” such as cutting Social Security, without additional tax increases.
Get it? The Republican leadership is already salivating over the President's proposed Social Security cut. They've been wanting to cut Social Security for years.
But they won't agree to close tax loopholes for the rich.
They're already characterizing the President's plan as a way to "save” Social Security - even though the cuts would undermine it - and they're embracing it as an act of "bi-partisanship.”
"I'm encouraged by any steps that President Obama is taking to save and preserve Social Security,” cooed Texas Republican firebrand Ted Cruz. "I think it should be a bipartisan priority to strengthen Social Security and Medicare to preserve the benefits for existing seniors.”
Oh, please.
And the day Ted Cruz agrees to raise taxes on the wealthy or even close a tax loophole will be when Texas freezes over.
The President is scheduled to dine with a dozen Senate Republicans Wednesday night. Among those attending will be John Boozman of Arkansas, who has already praised Obama for "starting to throw things on the table,” like the Social Security cuts.
That's exactly the problem. The President throws things on the table before the Republicans have even sat down for dinner.
The President's predilection for negotiating with himself is not new. But his willingness to do it with Social Security, the government's most popular program - which Democrats have protected from Republican assaults for almost eighty years - doesn't bode well.
The President desperately wants a "grand bargain” on the deficit. Republicans know he does. Watch your wallets.

GAA Readers:  Write the President and your Congressional Representatives to protest!  Organize a Demonstration (with your family and friends in your Community) demanding a stop to this disastrous plan to ruin US Social Security! Take action to alert citizens, young and old! 

Susanne Paul for Global Action on Aging

Monday, April 8, 2013

Getting Older? Start Exercising!

Reuters News reports that America's ageing population is posing special challenges. Why?  Fitness experts say it is difficult to design effective workout routines for people with such a wide range of abilities. For one 70-year-old, the goal may be to run a marathon; for another it's getting out of a chair.  And more people join the "older" ranks every day.  The US older population grew from 3 million in 1900 to 40 million in 2010.

Experts say that older adults should be doing aerobic activity to help maintain body weight, strengthening exercises to develop and maintain muscle mass and some type of flexibility training.  Physical activity can reduce the risk of diseases such as diabetes, hypertension and osteoporosis and improve the quality of life by maintaining functional capacity, such as the ability to climb stairs, open doors, and carry groceries.

Mary Ann Wilson is the creator and host of the program, "Sit and Be Fit," that includes warm-up, circulation and strength segments, a finger segment (for stiffness), standing for balance, and relaxation.  Posture, breathing, balance, cognitive functioning and reaction time are among the most important—and neglected—components of elder fitness, she said.

Karen Peterson, author of "Move with Balance: Healthy Aging Activities for Brain and Body," stresses a mind-body approach in workouts with seniors.  Her exercises include tossing a bean bag to improve reaction time, walking a figure-eight pattern for balance, as well as eye stretches, jaw relaxers and cognitive challenges to keep body and mind alert.  "We take balance exercises and add conversation or math problems," she said. "The concept is to always progress, always get more challenging." 

Experts agree that it's never too late to do something to improve our physical well-being. "Exercise is effective even in the most frail individual," Wilson said. "If they can wiggle their toes, they can exercise."

See you at Gym!  Susanne Paul for Global Action on Aging

Friday, April 5, 2013

US Citizens: Resist and Oppose President Obama's efforts to cut Social Security and other Old Age Programs!

(CNN) -- President Barack Obama intends to cut Social Security and Medicare in his proposed changes included in his proposed budget plan.  He also plans to add new tax increases (on the richest US citizens?), in an effort to reach a deal with Republicans on deficit reduction.  Please do what you can--phone, write, call, demonstrate--against these changes that could potentially reduce even further the quality of life for US seniors across the country.

The progressive group, MoveOn.org, has labeled the President's proposed changes to Social Security as "unconscionable" and Democracy for America called the cuts "profoundly disturbing."
"Millions of MoveOn members did not work night and day to put President Obama into office so that he could propose policies that would hurt some of our most vulnerable people," read a statement from Anna Galland, executive director of the group.   Well, it looks like the President fooled them! 

The "new" Obama plan will likely mimic the proposal that he made last year that included $400 billion in savings from Medicare over 10 years.  US seniors and our families must stand strong to resist this drastic change in our life chances in old age.  And younger citizens must look at this precedent:  the US Government has borrowed from Social Security . . . .but has it paid off its existing debt to citizens and the Social Security Program?  Ask your Congressperson.   Get the facts!

If you have comments, please send. 

With thanks for your advocacy by, with, and for older people (and those who will one day be "old") in the USA.
Susanne Paul for Global Action on Aging




Wednesday, April 3, 2013

How can we have a "Good Death?"

Dear GAA Friend,

A good friend of Global Action on Aging, Paul Kleyman, a key reporter for New America Media, has written a very fine article describing how medical personnel are learning from their patients about their needs, concerns and desires as they approach death.  Kleyman explores how doctors are learning from their patients about what they want to do, to engage in and to carry out in the closing days of their lives.  I think that you and your loved ones will find this article helpful as each of us considers what our last days and hours might be like.  
 
Have a good week, Susanne Paul for Global Action on Aging

 

Patients Teach Doctor How to Heal at the End of Life

Patients Teach Doctor How to Heal at the End of Life

 

New America Media, News Report, Paul Kleyman, Posted: Apr 03, 2013

Photo: Dr. V.J. Periyakoil is shown with one of her patients, Daniel Shaine. (Courtesy of the VA Palo Alto Health Care System)

PALO ALTO, Calif. -- How does a doctor specializing in saving lives turn into one of the nation's leading experts -- and medical educators -- on end-of-life care?

Dr. Vyjeyanthi "V.J." Periyakoil says her 25-year journey from medical school in her native India to directing Stanford University's palliative-care fellowship program taught her that the art of healing lies in listening to her patients. What she heard wasn't always in the medical textbooks.

What they told her led Periyakoil to becoming a leading voice in the movement to reconceptualize end-of-life care from limited hospice treatment in the last six months of life to comprehensive treatment for profoundly ill people .

"Much of my work had been on the importance of dignity in health care," Periyakoil recalls.

What People Want at Life’s EndStanford University palliative care expert, Dr. Vyjeyanthi “V.J.” Periyakoil believes that contrary to conventional wisdom, most patients don’t simply want every medical intervention that may or may not prolong their lives.
Overall people want appropriate care sensitive to their quality of life and, enabling them to experience their final days as fully as possible with minimal stress for their families.
In fact, a 2012 report by the California Health Care Foundation affirmed Periyakoil’s understanding of what patients hope for. First and foremost, Californians in the study said they didn’t want their families burdened by the cost of their care, or by having to struggle with troubling decisions about their treatment.

Also, participants in the poll said they wanted to be comfortable without pain and hoped to be “at peace spiritually.” On the survey’s list of 12 “Most Important Factors at End of Life,” people placed the desire “to live as long as possible” down at number 10.

The survey does show difference among ethnic groups. Although more than half of Latinos (56 percent) rated prolonging life as their top choice, only 18 percent of Asians did so, followed by 25 percent of whites and 43 percent of African Americans.

Palliative care is such a growing national concern that the federal Institute of Medicine launched its new Committee on Transforming End-of-Life Care in February.

--Paul Kleyman
She found that patients "cared more about concrete things -- 'Treat my pain first, take care of me first -- then you can treat me with respect.' For patients, that meant good pain care and symptom management, which is good palliative care."

Periyakoil began her practice in the United States as a resident in the crowded wards of Stockton's San Joaquin General Hospital. Her patients were mainly "migrant farmworkers, people with no insurance, people who didn't want to give you too much information" because of their immigration status or their fear they couldn't afford the treatment being prescribed.

She felt especially awkward when the medical advice she offered proved irrelevant to her patients' lives. "There was a mother of young children who had two jobs. I would tell her, 'Why don't you put your feet up? Why don't you eat more protein?' She'd try to answer, 'Well, I have to get back to work,' and I'd just continue to give the same silly advice."

Sensing her frustration, it was the patients who tried to reassure her. "'Oh, yes, I'll do that, doctor...Don't worry about me,' they'd say."

Struck by how many of her Stockton patients were immigrants, like herself, Periyakoil worked hard to make herself understood while also sensitizing herself to cross-cultural issues.

"When I first came to the U.S., I could read and write English very well, but because of my accent, my patients couldn't understand what I was saying," she recalls. She focused on enunciating every English word clearly, and came to appreciate nonverbal forms of expression -- like a worried look that exposed a patient's unspoken concern. The better she was able to communicate, the more likely her patients were to follow her medical recommendations.

Later at Stanford Medical School, where Periyakoil studied geriatric medicine, shediscovered another gap in her knowledge from patients who were deemed to have only six months or less left to live. Admitted to hospice care, their cure-oriented medical treatment would often be stopped in favor of "comfort" care.

"I had a hard time giving up on these patients," she admits.

Her determination to improve the quality of their lives, no matter how much time they had left, led her to realize that palliative treatment should begin as soon as a patient is diagnosed with a life-threatening disease. Care provided only when someone becomes eligible for terminal hospice coverage comes too late to fully help them.

So, for example, the average hospice stay in the United States is now only 19 days. But palliative medicine begun much earlier reduces the agony and stress of disease so well that many patients actually survive longer. And family caregivers, relieved of constant stress, have been shown to live longer following a loved one's death.

"Palliative care should be woven seamlessly into treatment," noted Periyakoil, who is also associate director of Palliative Care Services at the VA Palo Alto Health Care System. "Patients shouldn't have to know the word 'palliative care.' It should be something that is given to you when and where you need it because it is the standard practice."

Periyakoil also discovered that patients who come from cultures that discourage, even prohibit, open acknowledgement of death and dying typically wind up having their referrals to hospice treatment delayed until it's too late for them to benefit from broader palliative care.

At Cultural Boundaries of Death


She learned that cultural boundaries around death could be violated in other ways. She recalls a home visit she made to see a young Chinese woman with late-stage cancer. "The husband opened the door silently, did not respond to my greeting and went into his wife's bedroom. She must have died moments earlier. When I squatted down next to her body to check her pulse and prepare an official death pronouncement, her husband gently shook his head."

Sensing she was intruding in a sacred moment, Periyakoil withdrew. At the door she wanted to offer her condolences but the husband once again shook his head and her words froze in her mouth.

"Later I learned that Chinese Buddhists believe the soul lingers in the body for some time after death. So they do not touch the body nor vocally express grief as this might disrupt the passage of the dying person's soul and prevent them from being reborn into a better life."

To help doctors become culturally fluent, Periyakoil is producing a free, online text series addressing the sensitivities of 13 distinct ethnic groups, among them African Americans, American Indians, South Asians and East Asians.

Also she is developing videos for an online series on the need for doctors and the public to share decision making, titled "Can We Talk: Conversations with multi-cultural Americans about end-of-life care." In the segments, professional actors depict scenes from common patient situations drawn from doctors' real-life experiences.

At Stanford's Palliative Care Education and Training Program, Periyakoil's fellows embrace her holistic approach. "Palliative care is one of the few fields of medicine where you deal with the whole person," says Thui Pham, an internist. "There are so many factors that impact life, not just the medical issues."

"Palliative care is not about the end of life," Periyakoil concurs. "It's about how a patient can get the most out of every day."