“Death Panels” Language Distracts From Real Issues for Ethnic Elders

By Paul Kleyman, New America Media

August 26, 2009

Editor's Note: Misguided cries of "death panels" could keep already frightened elders of color from planning ahead and being able to leave this life with a sense of dignity and control, writes NAM senior editor Paul Kleyman.

For all of my sadness, I knew, as I held my father’s hand at the hospice, that my dad was one of the lucky ones. When liver cancer claimed him back in 1985, I happened to work at a nursing magazine and learned how few communities had hospice care then. 

That’s why I find today’s misguided cries of “death panels” and fearful claims of health care rationing such frustrating distractions from our national discussion about end-of-life care. 

Political fear mongering is especially troubling for many ethnic seniors. Already apprehensive about past racism in the health care system, many elders of color may be further deterred from taking advantage of opportunities to plan ahead and optimize their ability to leave this life with a sense of dignity and control, as my father did.

Only a year before dad died, I covered a speech by hospice advocate Elisabeth Kubler-Ross, MD, author of the groundbreaking book, "On Death and Dying." She describe how angry American doctors had literally spat on her in the 1960s when she began proposing that terminally ill patients should have the choice of pain relief and comfort in their final days, instead of futile high-tech measures to prolong their lives. 

The quest of medical professionals for a cure at all costs, although well meaning, was routinely creating agony for dying patients and their families. Often it still does. Science’s new ability to buy us time by extending the life of human organs also had a dark side of life prolonged beyond reason.

Medical science has turned on its head the age old question of whether death might bide its time for each of us. In the 21st Century, it is increasingly commonplace for us to ask when it’s best to allow time to take death’s natural course. 

That’s a question previously meant only for gods, yet, as we grapple with new and confusing decisions about the management of our deaths, we stand no less haplessly than ever on mortal ground. No wonder even the high and the learned stoop to spitting about “death panels” and sputtering about health care rationing.

We need guidance, not political and ratings-driven manipulation. On the one hand, we worry that technocratic processes might result in an unnatural death “incentivized” prematurely by cold budgetary considerations. On the other, we rightly fret about the indignity of a life ghoulishly preserved by unwanted tubes, electronic blips and the murmurings of strangers in white coats.

Miraculously, Americans now die on average 33 years later than our antecedents did in 1900. Last week the U.S. government announced that we can now expect to live to age 79.9 – and gaining.

Our rapidly aging society comes with the complexities of chronic illness that visited relatively few before, such as Alzheimer’s disease, congestive heart failure and many cancers. 

By far, though, most older people in the United States continue to die in medical institutions, whether we want to or not. The hospice movement has helped to mitigate this in recent years, enabling many to die at home or, like my Dad, in almost residential clinical settings. But the benefits of hospice care have spread only modestly for most communities, and even less so for elders of color.

Among recent findings about health care disparities between whites and ethnic minorities, for example, researchers led by Amresh Hanchate at the Boston University School of Medicine examined why black and Hispanic patients “receive fewer medical services and spend less on health care throughout most of their lives than white patients, yet on average they have higher costs in their last six months of life.”

Their study, published last May in the Archives of Internal Medicine, analyzed records of 160,000 Medicare patients in their final months. Even though white and ethnic elders had similar rates of various diseases, the research team found, “African Americans and Latinos are significantly more likely to be admitted to an intensive care unit in the final six months of life than whites.”

While ethnic elders more apt to receive intensive and invasive procedures, such as resuscitation and mechanical ventilation, non-Hispanic whites proved more likely to receive inpatient cancer chemotherapy or to use Medicare’s hospice benefit. 

The study’s authors noted that medical resources for African-American and Latino patients are probably misallocated over a lifetime. Greater percentages of both groups are uninsured than whites before going on Medicare. But they get more treatment at the end, the researchers commented, “when there is little chance of improving or extending life.” 

The study called for greater scrutiny of factors underlying this racial disparity. For instance, do more ethnic groups live in areas with higher rates of hospital use, such as inner cities? Also, previous studies have shown that ethnic patients hesitate more than whites to have do-not-resuscitate orders when revival would be futile, and more ethnic elders tend to request life-sustaining measures in their final days, sometimes to their detriment. 

The study authors concluded, “Addressing racism and creating health care equality is essential for the health and vitality of all beneficiaries and for our whole nation.” 

Elders of all colors need to know that Congress will probably drop the provision enabling doctors to be paid by Medicare to offer patients the option of discussing their choices if they become mentally incapacitated at the end of life.

Sadly, the fake accusations -- often from the same politicians who previously supported end-of-life consultations -- circumvent debate over legitimate concerns about the proposed counseling sessions by doctors. Americans should be learning that the national shortage of physicians trained in geriatric care means most doctors asked to provide end-of-life guidance are not well educated to treat older people.

Few Americans know that although the Medicare “HI” (hospital insurance) deduction from their pay checks includes a portion for training physicians, none of that amount is dedicated to geriatric training. The United States is well behind other advanced economies in educating doctors about the special needs of seniors. Two years ago, the Institute of Medicine issued a benchmark report detailing the shortages ahead in all health care professions of practitioners trained to treat elders.

As I watched my father fade back in 1985, I was relieved to see him aware enough until the end to negotiate his comfort level with a nurse. He wanted to minimize his morphine drip, and she patiently coaxed him to accept a little more to ease his obvious discomfort. 

Dad wanted nothing more than to manage his pain without becoming lost in a druggy fog. He wanted every moment in this life to be his own.

I’d like the same sense of control next year, when I turn 65 and go on Medicare. I won’t want my daughter caught in a bind later, because I failed to act with well schooled medical advice and ended up unable to tell her my preferences.

I’ll want more resources, not fewer of them, committed by Medicare to making sure that I’m consulted regularly when needed by health care professionals with the proper training and resources to enable me to exit as peacefully as my dad did, maybe even with the sweet scent of fresh honeysuckle that wafted in his hospice room.

While Congress dithers and distracts, though, people can consult on their own with the National Hospice and Palliative Care Organization. Its website offers excellent educational materials, some in Spanish, and model forms for each state at their website: www.nhpco.org. 

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