Published On January 28, 2015
For the first 10 year that my mother lived with Alzheimer’s disease, my father took care of her, in a retirement community near Princeton, N.J. He had promised her she would never have to go into a nursing home or end her life in a hospital connected to tubes and IVs. Even as her eyes grew cloudy and vacant, he still saw the brilliant brown jewels that had gleamed at him over a milkshake at a University of Oklahoma soda fountain in 1945.
My mother was depressed and anxious, knowing that this incurable disease would rob her of memory, personality and dignity. “Alzheimer’s is a terminal illness,” says Susan Mitchell, a geriatrician and researcher in Alzheimer’s and end-of-life care at Hebrew SeniorLife, an elder care provider in Boston. “At the beginning it’s a disease of the mind and then it affects the whole body, leaving patients incapacitated and bedridden.” My beautiful, loving mother would gradually lose track of where she was, what was happening in the world, how to dress herself, and who her husband was, finally becoming immobile, incontinent, incoherent, catatonic.
Alzheimer’s already affects more than 5 million Americans, a number projected to grow to 7 million by 2025. My mother was diagnosed in 1996, and 10 years later she needed round-the-clock care, so my father hired private aides day and night to help her. “I never thought it would be like this,” my mother repeated over and over again, pounding her fists. “I’m not going to do this anymore!” She had a living will requesting that she be allowed to die and to receive drugs to relieve terminal suffering “even if they hasten the moment of my death.” She had advance directives about the decisions we family members might face, including “do not hospitalize, do not intubate, do not resuscitate” (DNH/DNI/DNR) orders. And she gave my father and my sister Sherri durable powers of attorney for health care to act on her behalf when she was incapacitated.
When asked, three out of four people say they would prefer to die at home, receiving comfort care only and with no intrusive interventions. Yet most people fail to discuss end-of-life wishes with their families, and only one in four actually prepares advance directives. So when the end nears, most families don’t know what their loved ones would want. Meanwhile, doctors are trained to defeat death, not allow it to happen. And the fee-for-service payment system creates perverse incentives for sending dying patients to hospitals, where the default mode is acute care. As a result, very many people receive unwanted (and expensive) end-of-life treatments that exacerbate, rather than alleviate, pain and suffering.
Yet Sherri and I would learn that simply knowing our mother’s end-of-life wishes wasn’t enough. “Your mother was in a very high-risk group for unintended suffering, burdensome care, family distress and revolving-door hospitalizations,” says Diane Meier, a geriatrician at Mount Sinai Hospital in New York City and a leader in health policy for palliative care. “What system of care would assess her needs and preferences and protect her from all of those unwanted consequences?”
ON THE TENTH ANNIVERSARY OF MY mother’s diagnosis, her neurologist told us she had reached the “end stage” of her disease, and he recommended hospice care. The concept of hospice may date to the safe houses of Biblical times where travelers could find refuge from bandits. Today, patients and their families hope it provides a refuge from unwanted end-of-life interventions. In hospice care, patients forgo curative treatments but receive care focused on comfort, managing symptoms, relieving pain, emotional support and enhancing the quality of the time they have left.
In our case, my father kept the round-the-clock aides as my mother’s condition deteriorated, but now a hospice nurse also visited every week, adjusted my mother’s medications, coached the aides on how to feed her so she wouldn’t choke, and educated all of us about what to expect and do—for example, that when my mother began refusing food and water, it would mean she was actively dying. She wouldn’t be suffering or experiencing thirst or hunger—on the contrary, continuing to feed her then would itself cause discomfort. In a crisis, a hospice nurse would come to her bedside. “Don’t call 911,” she warned. Doing that would set in motion a chain of unwanted events—ambulance, emergency room, diagnostic tests, hospital admission, and interventions such as feeding tubes, heart resuscitation or surgery.
All of this should have ensured that my mother could have the death she wanted. Three weeks later, though, it was my father who suddenly died, possibly from the stress of caregiving.
How could we now uphold his promise to our mother and help her stay at home—when we daughters lived out of state? We could hire another aide to live with her full-time and keep the night-time aides so the primary aide could sleep—none of this was covered by insurance—and we would visit every weekend. The hospice agency would manage her care and provide extra eyes when we weren’t there. Besides, we didn’t expect her to survive long without her husband of 60 years. But she lived another four years.
That was not particularly unusual. Alzheimer’s can kill quickly, but it can also take as long as 20 years for a patient to die. And on average, 40% of the period after diagnosis is spent in the most advanced stage of the disease.
HOSPICE SEEMS IDEALLY SUITED FOR advanced Alzheimer’s patients, but it’s sometimes a mismatch. To be admitted, a physician must certify that death will come within six months. That requirement stems from the early days of hospice, when it was designed just for cancer patients, yet it’s much harder to predict with reasonable accuracy when a person with dementia will die than it is for someone with cancer. “Alzheimer’s prognosis is so variable that most people who need hospice care won’t get it because it’s not clear they are dying until the last week of life,” Meier says.
And even when someone like my mother does get admitted to hospice, there’s another obstacle—a need to show continuing decline. Patients who live longer than six months must reapply; those who “stabilize” and stop getting worse are no longer eligible for hospice. Ironically, hospice patients often do improve, because the comfort care alleviates medical problems caused by the side effects of intrusive interventions.
Advanced dementia patients usually die after developing an infected bedsore, or a urinary tract infection, or pneumonia— symptoms of ongoing decline that my mother didn’t have. Our aides repositioned her frequently so she didn’t get pressure sores. They fed her carefully so she didn’t breathe food into her lungs and get pneumonia, and she didn’t lose weight. “If your mother had been in a nursing home, she probably would have developed those problems,” Meier says. “By providing the loving, meticulous care that everyone would want, you extended your mother’s life”—and, in a cruel paradox, jeopardized her eligibility for hospice.
We were able to have our mother’s hospice benefit extended once and then a second time after she had a ministroke and appeared to be weakening. But after those 18 months, she ran into another obstacle: the cumulative dollar cap per patient that Medicare places on the benefits it will pay to a hospice agency. Such agencies receive a flat, per-diem payment for each patient. But usually the bulk of expenses occur when a patient is admitted to hospice and again when she is dying. In between, daily expenses are typically lower, enabling agencies to profit from long-term patients. Increasingly, though, Medicare is scrutinizing hospices, and to avoid fines, hospices are discharging long-term patients, most of whom have dementia, before they reach that cap.
So while experts bemoan the fact that most patients apply for hospice too late, eligibility rules force out many people with advanced Alzheimer’s because they’ve survived too long. Patients like my mother end up back in the throes of a medical system that’s determined to give them exactly what they don’t want or need—intervention-oriented care that, research shows, often costs more than if the patient had remained in hospice. Even if my mother had stayed in hospice, and it ultimately cost more, shouldn’t the goal be to provide the best possible care? Medicare covers a $100,000-plus per year cancer drug for patients if that’s the best treatment.
WE GOT THE WORD JUST AFTER Christmas 2007 that my mother was no longer eligible for hospice. We found a new doctor and hired a new nurse for weekly visits, in addition to the aides we already had. But we no longer had one number to call or a team of people who communicated directly with each other about her care, or who would respond immediately in an emergency. Sherri and I spent untold hours arranging services, monitoring care and medications, and investigating unexplained or belatedly reported problems. “When Mom was under hospice care, we knew that she would receive no treatment other than to keep her comfortable and pain free,” Sherri says. “Without hospice, ensuring that became a near-constant battle.”
The new doctor told us she might override our mother’s “do not hospitalize” order if she felt it was necessary—for example, to treat her for pneumonia. We objected that sending her to the hospital was not consistent with our mother’s wishes. But the doctor’s response was that if it were her mother, she would take her to the hospital.
“It wasn’t right that your mother’s doctor placed her own values above your mother’s,” says Vicki Jackson, chief of the division of palliative care at Massachusetts General Hospital. “Patients, and those who are authorized to speak for them, have the right to refuse treatment”—but in practical terms that’s hard to do unless the physician agrees. Unfortunately, few medical schools emphasize palliative care and end-of-life communication skills.
IN THE SUMMER OF 2009, AFTER 18 months without hospice, my mother began sweating and having tremors. She appeared weaker and thinner, and it took longer to feed her. She developed pressure sores. The aides asked: “What if your mother spikes a high fever? What if she gets pneumonia?”
We were facing the most common decisions that families of dementia patients confront. Up to 40% of patients receive antimicrobials during the last two weeks of life, and one-third of nursing home residents with advanced dementia are tube-fed, but neither intervention has actually been proven to help the patient.
We had been asking the doctor to re-certify my mother for hospice, but she thought we were abusing the hospice benefit. “Do you think your mother has a 90% chance of dying in the next six months? I don’t.” Neither she nor anyone else told us we could appeal directly to the hospice agency. “We educate the family that they can call about resuming hospice care as soon as they notice a decline,” says Stephanie Patel, medical director at Care Dimensions (formerly Hospice of the North Shore), an agency in Danvers, Mass. “They don’t have to wait for the physician. The real question is, would it surprise you if this patient died within six months, not can you predict it.”
My mother did die within six months. But not before our doctor sent her to the emergency room for tests. She had been refusing food and water, and in the ER, the tests showed dehydration, infection and kidney failure. Overriding my mother’s advance directives, our doctor admitted her to the hospital and ordered IV feeding, hydration, sodium and antibiotics. She said they would keep her for five days or so and “then see.”
Upset, I drove from Massachusetts and arrived at the hospital at 10 p.m. on a Friday. My mother lay comatose under a thin hospital sheet with tubes going in and out. Her head was back, her mouth open, her eyes drawn shut and her brow furrowed. I began crying. “I’m so sorry, Mom. I’ve failed you.”
“You felt as if you could have prevented it, but you did everything you could,” Meier recently told me. “The system is much stronger than you are.” When her mother was dying, Meier served as a “wall” between her and the medicalization of death, getting her into the palliative care unit that Meier herself had founded at Mount Sinai in 1997. “Does everyone need to be a geriatrician and palliative care specialist to protect their parents?”
THE DOCTOR ON HOSPITAL DUTY came to my mother’s room around midnight. “Is she dying?” I asked. “Why is she even here?” He didn’t understand why she had been admitted and said she would be actively dying if not for the IVs. “Sometimes patients are trying to die and doctors interfere with that,” he said. Now that her kidney function and fluids had been restored, it would take longer for her to die. But this doctor, a stranger to us, helped us honor our mother’s end-of-life wishes.
It still took three days to get my mother back home and under hospice care. And just as she had been the typical dementia patient dismissed from hospice for surviving too long, now she was the typical case admitted too late. We had just one visit with the hospice nurse. Five days later, my mother was actually dying, but the nurse couldn’t get to her because a storm had flooded the roads. My sister and I were alone with our mother when she died peacefully in her bedroom.
“Advanced Dementia: State of the Art and Priorities for the Next Decade,” by Susan L. Mitchell et al., Annals of Internal Medicine, January 3, 2012. This paper calls for greater recognition of advanced dementia as a terminal illness and correspondingly increased access to hospice and palliative care services.
“A National Study of Live Discharges from Hospice,” by Joan M. Teno et al., Journal of Palliative Medicine, August 7, 2014. Researchers investigate the economic forces behind a growing trend of dismissing patients from hospice.
VIDEO: End of Life With Dementia. Hospice and palliative care experts discuss shortcomings of the current model of dementia care and suggest changes to the healthcare system that will lead to better end of life care for this growing population.
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