By Richard Pretorius
Sunday, May 6, 2007; B02
My mother's last scream pierces my conscience as I try to fall asleep in a lonely house. Eight months after her death, my mind still wanders to the image I'll never be able to escape: She is gushing bloody vomit as I hold her, yelling for help and pulling desperately on the call cord in her room.
No one shows up, so I have to leave her and run up and down the halls of the care facility she has been sent to, shouting for the night aides. They arrive, too late. One puts a stethoscope to my mother's heart and tells me she is gone. The cancer has killed her, as the doctors had said it would. But did it have to be so horrific?
The story of my mother's death is a cautionary tale of modern medicine. It's a story of profits placed ahead of patients, of medical professionals protecting their own and of the dying elderly being treated as if they were already dead. Unless something changes in our medical system, I fear that what happened to my mother will happen again and again.
At 86, my mother, Holly Pretorius, had been on oxygen for respiratory problems for more than a year. She had survived breast cancer, had artificial knees, someone else's corneas and a white-knuckle fear of getting Alzheimer's disease. When she had more trouble breathing early last summer, we blamed it on the heat. But by the time she entered a Virginia hospital in late July, cancer had spread rapidly.
The doctor in charge gave her one to two months to live and asked the medical social workers to look into discharging her to a hospice or care facility, because, he and the staff said, Medicare would not pay for an extended hospitalization. After only two days, plans for her further care were being made on the basis of money, not her best interests. I would soon learn that this is the rule of the day in treating the dying elderly.
My mother and I talked about caring for her at home, but we both worried about the emotional toll and about what kind of assistance would be available. We favored the local hospice; we had been there recently to visit a friend's father and found the staff compassionate and competent. But it had no open beds.
My mother was placed on the hospice waiting list, but social workers insisted that she could not stay in the hospital until a space became available. So instead of spending as much time as I could at my mother's bedside, I spent hours driving around town checking out the suggested alternate facilities. Most had no beds. The first to open up was at a place where the stench of urine permeated the air and many residents sat in rickety wheelchairs staring at the walls. I protested a social worker's efforts to move my mother there by arguing that a retired schoolteacher who had paid $400 a month on a long-term-care policy since 1997 deserved something better. The social worker looked at me as though I were an out-of-line sixth-grader.
Within a week of my mother's admission to the hospital, the doctor told me that her cancer was spreading so fast that she had only two to three weeks to live. I thought that surely the hospital could keep her that long. But it continued trying to move her out, saying that Medicare would stop paying. Medicare officials have since told me that the decision as to whether to keep her was really up to the doctor.
After two weeks, several phone calls and a visit from me, a bed became available at a facility with a soothing-sounding name. It was there that the awful scene that haunts my nights took place.
My mother's final hours were a medical meltdown of Chernobyl proportions. The hospital's staff insisted on transferring her, even though she had been throwing up blood for hours. The care-facility administrator, knowing that my mother would not last more than a few days, demanded to be paid for a whole week as soon as I arrived at the door. Worst of all, the facility had no medication on hand to relieve my mother's pain -- the hospital had failed to send it with her. I had to race back to pick up her prescription, the sound of her screaming "Just kill me" reverberating in my head.
My mother was kicked out of the hospital after 15 days. Twenty hours later, I was kissing her cold forehead and weeping as I waited for the medical examiner to arrive. A 16th day -- or even a 20th -- at the hospital would have broken no budgets, but would have allowed her to die with help and comfort nearby. Instead, a profession that is first supposed to do no harm did plenty to us by not caring enough to do what was right.
All these weeks after some of my mother's ashes were buried in town and the rest scattered on an Alaskan glacier, no one involved in her care has bothered to say that the system shouldn't have worked the way it did.
No doctor, nurse or administrator has told me that I shouldn't have had to rush from the care facility to the hospital to get her medicine. In a March 12 letter addressing a complaint I filed with the state, the medical center's interim president wrote: "It's not unusual for family members to participate in the care of their loved one by picking up medicine at the pharmacy if they chose to do so to expedite the retrieval of those medications." But I don't think most people picking up medicine are desperately trying to relieve their loved one's unbearable suffering.
No one has said that I should not have had to leave my mother's side in her dying hours. Instead, the care facility where she died has sent me a bill for plastic gloves, lotion and towels.
No one involved in those harrowing last hours has even had the decency to say they're sorry.
When I asked the doctor late last year why my mother had been allowed to die the way she did, he again hid behind Medicare rules and said that he had offered to let her stay in the hospital -- as if I would have turned him down if he had. The hospital president simply wrote, "We . . . regret that your mother's hospital experience was not positive."
Yes, I've talked to lawyers. Each has spun his own version of the same response: What happened was horrible, but the cost of taking a case to trial could be more than we would ever recover because your mother was going to die so soon. What they're really saying is that money matters most to them, too.
I have filed complaints with the Virginia state agencies that regulate medical professionals, hospitals and care facilities. An April 6 e-mail from the Department of Social Services, which regulates care facilities, said my complaint about the lack of response from aides when my mother was dying was "unfounded."
But the department never interviewed me or my mother's primary-care physician, who called a few hours after my mother died to learn what had happened, nor any of the people who had visited her in the facility. The aides were not even asked where they were when I was frantically seeking help.
The state Health Department's Office of Licensure and Certification, which oversees hospitals, also did not interview me or anyone who visited my mother in the hospital before determining that the hospital committed "no regulatory violation" related to my mother's discharge. The agency's conclusions seem based solely on my complaint letter, the hospital president's spin-city response and the incomplete and sometimes misleading medical records.
When I pointed this out to a department official a few weeks ago, he invited me to Richmond to discuss my mother's care. While I am not expecting much, at least someone in the state's medical establishment is finally willing to listen.
As galling as anything to me were the words of a hospital bean counter -- otherwise known as a risk-assessment manager -- who asked me what difference it would have made if my mother had died in the hospital rather than the way she did.
Translation: She was going to die anyway, so who really cares where and how?
I do -- passionately. And so should everyone else who has aging parents or thinks that they might one day be elderly themselves.
Richard Pretorius is a former copy editor
at The Washington Post.