When My Mother Wanted to Die

My mother was an active, healthy 91-year-old when she fell on a marble floor in her high-rise, badly damaging three vertebrae. She didn’t tell me or go to a doctor, so by the time I arrived in Florida four days later she was in agony, having taken nothing stronger than Tylenol. No doctor I reached that night would make a house-call. She kept moaning, “I want to die.” The next day her aide and I somehow got her to a doctor, who prescribed something so inadequate that she was screaming the next night. The facts blur, but eventually in desperation I called a friend, a pediatrician in another city, who said to insist on Oxycontin. I did, and that night my mother slept. And so did I. But the pediatrician also said, “This is standard medical practice. So your mother is 91? They don’t want her to become an addict.” (This was before the opioid epidemic, long before doctors were getting blamed for over-prescribing.) My mother recovered; she learned to walk again normally. She was never addicted.

No adult child should ever have to hear a parent say that she wants to die for untreated pain. Yet, as Dawn L. Denny and Ginny W. Guido, two nursing professors, report, adults over 70 are the group at the highest risk for undertreatment of pain. In long-term care settings, a fourth of older adults may not receive adequate pain relief.1 Malpractice can be defined as injurious, negligent practice. Undertreating elder’s pain is only one kind of malpractice against those among us who have survived into later life, a group that now includes me and most of my friends. Hard as it is to say after my mother’s ghastly, traumatizing ordeal in Florida, what happened is not by any means the worst story. Medical ageism takes many forms—in nursing, medicine, and surgery, in care given by EMTs and in hospitals, in treatments for disease and for acute attacks. Over the years I have collected startling scientific news about patterns of neglect.

One of the startling examples comes from a study of 335 Welsh patients, whose ages ranged from as young as 30 to 101. It found that the length of a cardiac resuscitation attempt declined with age, with those aged over 70 receiving a median resuscitation time that is astonishingly shorter: 6 minutes versus 13 minutes for those under 70.2

If you are a woman with breast cancer who is over 65, the odds of not receiving chemotherapy are 7 times greater than for a woman under 50.3 Indeed, a survey of physicians in the Oncologist concluded many cancer specialists would deny older people with colon, breast, lung, and prostate cancers the potentially life-saving treatments that they would offer younger people, even in circumstances when the former could benefit as much.4

Older patients often come out of hospital stays sicker than they went in: they may need quick rehospitalization or die of causes like sepsis, heart arrhythmia, and pneumonia, which might be prevented. There may be many reasons why. But one Harvard study of 1,000,000 Medicare patients found that female physicians are better than male doctors at keeping down re-hospitalizations and preventing such deaths. If male doctors achieved the same outcomes, the article in Journal of the American Medical Association Internal Medicine estimated, annual deaths of Medicare patients would drop by 32,000.5 What behaviors, training, or attitudes, might explain this gendered difference in care? I’ll come back to this next and discuss how ageism works.

These examples—inadequate CPR, unequal treatment of some cancers, and hospital neglect—are evidence-based instances of undertreatment. There are also systemic problems that disparately impact older people. Fragmentation of care is one, where patients with multiple issues are seen by different and uncoordinated specialists. These can turn deadly serious, but bias is harder to measure.

* * * * *

Undertreatment has many causes, and ageism is a major one. Ageist assumptions that many lay people share — arising from ignorance about the variable experiences of old age and impatience at bodily difference—produce disabling fears of older people themselves, and of old women in particular, the majority of the very old. Much of ageism is sexist ageism combined with ableism. Compound stereotypes and fears are confirmed by the “medical model,” which takes for granted that all people growing into old age are sick or frail. In decline discourse, aging brings no benefits; people can be considered no longer quite human. The first chapter of my most recent book, Ending Ageism, or How Not to Shoot Old People, is titled #StillHuman.

Heterogeneous as old people are, privileged as some may be, as a group, we endure many attributes of other numerical minorities: invisibility and hypervisibility, intolerance of our appearance, lack of audiences for our subjectivities, underestimation of our trials, dislike of our alleged characteristics or disgust at our apparent weaknesses.

Younger people themselves often report, on what is called the “Fraboni scale” of social bias, that they don’t want to listen to old people, look them in the eye, or spend time with them. They report these obnoxious behaviors openly, because they don’t recognize them as prejudice. Such common attitudes, painful and repugnant in social life, become treacherous when they emerge in medical professionals.

Consider any medical training that does not insist on listening well, particularly to older patients. Defective pain management can arise from doctors’ heightened avoidance of opioids for chronic pain, but also from not accepting the self-report from certain patients about acute pain. Not listening in clinical settings may occur more frequently when an old person, likely to be a woman (and/or a person of color or LGBTQ), is telling their story.

Some professionals see “Alzheimer’s” too readily. Making an unwarranted assumption, they may overlook causes of hesitant or slow speech that are treatable, like dehydration, urinary tract infection, hearing loss, or simple shyness. Some fall into condescending “elderspeak.” Geriatricians notice a range of prejudiced behaviors. “A person may be delirious or may not understand everything, but they do not like the patronising way physicians speak . . . If someone has dementia, I still think the communication should be in a mature manner.”6 “When I look at the interns and residents I get shivers down my spine,” this geriatric specialist concluded; seeing disregard of basic politeness and ignorance of nursing fundamentals and bioethics might make any of us shiver.

The Harvard JAMA study mentioned above, about the extra deaths of thousands of Medicare patients, begs for educated guesses about why gender matters in life-and-death caregiving to elders. Are some male doctors less comfortable with the bodies and issues of older women, who make up the core of the practice? Hospitalists, who are randomly assigned to patients, need to adequately weigh how long to give care, a determination which requires asking patients about their social and home circumstances. Women doctors do spend more time with patients, the prerequisite for listening and communicating. GOMERs—“Get ’em Out of My Emergency Room!”—is a term for elderly patients that some doctors-in-training learn. “GOMERs” remind them that old people have complex problems that are difficult to treat. They will take more of your overworked, under-slept time; shunt them quickly to another part of the hospital. That advice and label are offered in that fictional Bible, Samuel Shem’s House of God, often presented to residents as a classic that will help them get through that first hideous year when doctors are broken in to the reality of medicine. The young doctors who come into training moderately ageist, may exit primed with more jokes about the moribund and heightened aversion to disability or frailty.

Some younger people believe people who are old and sick are ipso facto close to death. (My mother at 91, like a lot of the new nonagenarians, had many good, healthy years left and no wish to die.) Unless they have geriatrics training, some medical personnel may not feel that older people are as well worth saving. One of the physician researchers I consulted says yes, professionals “perform CPR longer on those they value more,” but CPR “has a pretty dismal success rate.” Okay, then when they stop offering it to younger people as a best practice, they can give up on equal time for restarting my offended old heart.

Care of older cancer patients presents challenges related to the different biology of cancer in older persons, individual health status, and co-morbidities. All these influence treatment selection. The incidence of some adverse side-effects increases with age, which argues for not offering a given treatment to people over a certain age in cases when costs are estimated to be greater than benefits. But some surgeons’ simplified “estimates” may be short-changing older people. Age by itself—chronology as a fact, or agedness as an appearance—should not be determining “cost” in the financial sense either.

In the United States, individual states have statutes that specify what elder abuse entails. “Elder abuse” can certainly include hitting old people or stealing their money; it can also include deprivation of care that results in physical harm, pain, or mental suffering. Careless care may also lead to death. Researchers are beginning to conclude that undertreatment of older patients may be a reason for their having poorer outcomes than younger patients.

 

Why Is Undertreatment So Little Known?
The public is not well informed about such age-related disparities in health provision. For years, as researchers pointed to undertreatment as a serious public-health issue, in the public media many pundits, and even some gerontologists and feminists, continued to opine that “overtreatment” was the single most important public health target. One allegation is that doctors offer useless treatments to seriously ill people, in order to offer anything at all. Patients living with dying ought to be offered “all the options.” By “all,” I mean the well-meaning urge of medical professionals who help them tend to the quality of their life, and consider hospice or palliative care as the alternative to further treatment.

This is ethically acceptable, although hospice is not incompatible with further treatment. But the option some thought leaders want sick old people to consider foremost is: just saying no to treatment. At worst, they say explicitly that high cost is a national problem. President Obama himself said this, in an interview with the New York Times (April 28, 2009), when he said his beloved grandmother got a replacement for a broken hip at a time she had cancer. He would have paid for the operation himself if Medicare had not. But he also said that doing so as an “entitlement” may not be “a sustainable model.”

Whether society’s making those decisions in the aggregate to give my grandmother, or everybody else’s aging grandparents or parents, a hip replacement when they’re terminally ill is a sustainable model, is a very difficult question. If somebody told me that my grandmother couldn’t have a hip replacement and she had to lie there in misery in the waning days of her life — that would be pretty upsetting. [1]

So that’s where I think you just get into some very difficult moral issues. But that’s also a huge driver of cost, right?

I mean, the chronically ill and those toward the end of their lives are accounting for potentially 80 percent of the total healthcare bill.7

The argument that money should be ever more prominent in healthcare advice to the chronically ill and the dying is vicious, even if it could be proved that care going to them is actually “80 percent” of the bill. It’s no excuse that Obama spoke during the global financial crises. No one, least of all a president, should suggest that the “aggregate” of disabled, chronically ill, and dying people have less right to appropriate healthcare, as if healthcare should go only to the well. Or as if our lives were of less value than others.

The phrase “not sustainable” in relation to Medicare is an ageist dog whistle to Republicans prating about deficits in Medicare’s impressively cost-effective program. Congress should focus on human well-being, on obtaining discounts on medications and devices permitted to Veterans Affairs, and clawing back revenue from the swollen military budget. Medicaid covers care for low-income disabled, sick, and old adults, a majority of whom are women. As I write, small-government neoliberals are trying to cut the budget for Medicaid in the new tax bill. This could force indigent people now in nursing homes into their adult children’s houses (if they have children), or onto the street if they have no one able to care for them.

The focus on costs of overtreatment makes old people seem like a burden to be shucked. That focus has served as a distraction from the real problems of undertreatment. Alleged costs of overtreatment may yet serve as an insidious argument for rationing if undertreatment becomes an alarm bell. I have aged into the perilous later-life period, where, still healthy, I am learning to fear ageism across the board. At the most frightening time of our lives, when we become chronically ill, or grow old and ill, or get hurt in accidents, when we are liable to hospitalization or entrance into nursing homes, for whatever reason, we are the most threatened by those with power over us—some medical professionals, Republicans in Congress, and the general public’s vast ignorance, alienation from old people, and trained indifference to ageism.

 

Agewise Thinking Is the Answer
People who say they don’t know what ageism is—or who think it is someone on the bus politely offering your tired muscles a soft seat—ought to recognize its dangerous forms. Some scientists say biomedical research is the key to health, but serving patients of all ages without fear or favoritism is where the well-being of older people truly lies. Researchers are beginning to ask, with regard to older patients: “How can we do better?” Agewise thinking is the answer of age critics: eliminate bias in training, practice, research, and public policy.

The data that the U.S. has more old people to care for, has not led—as it should have—to funding more faculty to teach geriatrics or more geriatricians giving direct care. Knowing about medical ageism might, because education can save us from prejudice.

Training and practice. Medical ageism ought to be a moral issue that medical schools confront. Training in communication and diversity would help, if “diversity” includes age, illness, and disability. The new oath that doctors take when they graduate from New York Medical College, Tulane, and UC-San Francisco includes a vow not to discriminate on the basis of gender, race, religion, or sexual orientation.8 This is just. But why are ageism and ableism omitted? Doctors conscious of other biases seem less aware of these. Women, people of color, Muslims, trans people, and other adults whom they may have learned to protect also grow old; and once enrolled in this new stigmatized category, may receive negligent care. (I call ageism in such cases the replacement bias.) Shouldn’t a concerned public demand a vow of anti-ageism and anti-ableism from all medical schools?

The issue manifests in research practice: it was once a cruel discovery that women were omitted from heart-medication trials. Now, it is becoming known that representative older patients with multiple conditions or cognitive impairments are underrepresented in randomized controlled trials.9 In trials evaluating new drugs for treating breast cancer, fewer than 10 percent of participants are 65 or older.10 Ageist assumptions may prevent appropriate research agendas or distort data analysis.

All patients past midlife ought now to be given extra consideration, even before data about failures in particular treatments or outcomes, correlated with age, become available. Alerted to possible age bias, surgeons ought to reconsider older women and men with cancers of all types, mentally holding open the option of treatment. Ultimately, the public must respect a person’s educated wish to choose to receive medical treatment at any age.

Ageism manifests in public policy: shouldn’t the media reproach and shame millionaire Congresspeople for ageist ableism when the Solons manipulate budgets and tax breaks in order to cut Medicare and Medicaid? Medical ageism ought to be one moral and political issue that any thoughtful President confront, when he uses his bully pulpit to decide the future of healthcare. Everyone has a responsibility to transform our ageist culture, for their own sake as well as the collective good.

My darling mother lived to be 96, charming her family, her aides, and other residents in her assisted living community. She died in her own bed, in my presence, with the help of a devoted physician’s hospice team and adequate morphine. During those five years, she never took more than an aspirin. She never again had to say “I want to die.”

________

Notes
1. Dawn L. Denny and Ginny W. Guido, “Undertreatment of Pain in Older Adults,” Nursing Ethics 19, no. 6 (2012): 800.

2. A. R. Haden and J. Butler, Abstract, “Length of Resuscitation Attempt versus Age—An Ageist Approach?” Age and Aging 41 Supplement 2 (July 2012): 71.

3. Stacy Woodard et al., “Older Women with Breast Carcinoma Are Less Likely to Receive Adjuvant Chemotherapy: Evidence of Possible Age Bias?” Cancer 98, no. 6 (September 15, 2003): 1141–49.

4. 200 physicians were asked about scenarios differentiated only by age; the results are discussed in J. A. Foster et al., “How Does Older Age Influence Oncologists’ Cancer Management?” Oncologist 15, no. 6 (2010).

5. The article in JAMA Internal Medicine, by Ashish Jha and others, was reported by Casey Rose, “Benefits Seen from Female Doctors: Study of Older Patients Finds Better Outcomes,” Boston Globe, December 20, 2016. See also “Study Finds Elderly Patients Do Better under the Care of Women Doctors,” New York Times, December 20, 2016. http://nytlive.nytimes.com/womenintheworld/2016/12/20/study-finds-elderly-patients-do-better-under-the-care-of-women-doctors/ Accessed November 1, 2017.

6. R9 is quoted in C. Brouwers et al, “Improving Care for Older Patients in the Acute Setting: A Qualitative Study with Healthcare Providers,” Netherlands Journal of Medicine, 75 (October 2017).

7. Obama is quoted in David Leonhardt, “After the Great Recession,” New York Times, May 3, 2009. http://www.nytimes.com/2009/05/03/magazine/03Obama-t.html?pagewanted=5&_r=1&ref=magazine.

8. Melissa Bailey, “So long, Hippocrates: Medical Students Choose Their Own Oaths,” Boston Globe, September 22, 2016.

9. Karin M. Ouchida and Mark S. Lachs, “Not for Doctors Only: Ageism in Health Care,” Generations, October 22, 2015. http://www.asaging.org/blog/not-doctors-only-ageism-healthcare.

10. Richard Currey, “Ageism In Healthcare: Time for a Change,” Aging Well 1, no. 1: 16.

http://www.todaysgeriatricmedicine.com/archive/winter08p16.shtml.

 

Margaret Morganroth Gullette is the author of Agewise: Fighting the New Ageism in America, from which this article is adapted and updated. She is a resident scholar at the Women’s Studies Research Center, Brandeis University. © 2013 Margaret Morganroth Gullette.
 
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