There’s a five-foot-tall altar in the living room of Portia Jocson’s Fremont home. A line of devotional candlesticks stands guard before a statue of Our Lady of Lourdes, clothed in a powder-blue robe and topped with a crown. Looming above the Madonna and a host of rosaries, a three-foot infant Christ dominates the centerpiece, a ruby lamé gown hanging from its body. Sitting at the dining-room table, almost in the shadow of her Redeemer, Jocson weeps for her mother: “She was our rock. She held us together, she taught us to be dignified. She taught us to live, to be happy people.”
Jocson’s mother, Felicidad Gomez, had an ironclad will to survive and sacrifice for her family. In the Philippines, despite her limited education, she had taught her own parents to read and write. Then in 1970, Gomez fled the regime of Ferdinand Marcos, along with her husband and four of her six children. Within a year, her husband was dead, and she found herself in a foreign land with a fifth-grade education and barely any command of English. So Gomez set out to build a new life for herself. She spent years on the swing shift caring for the elderly at an Oakland rest home, and relentlessly instilled an immigrant work ethic, the value of education, and a tenacious family loyalty in her children, who include two doctors, a nurse, and an Intel engineer. After years of struggle, Gomez spent her retirement babysitting and cooking elaborate sausage dishes for her 30 grandchildren and 27 great-grandchildren, moving from the house of one child to the next every few months, filling their kitchens with the smell of roast pork.
Years ago, back in her ancestral village of Hagonoy, Gomez’ family donated the land on which the local church now stands. This year, her family financed Hagonoy’s festival of Our Lady of Lourdes, and in February, Felicidad Gomez led 28 members of her clan back to the village for the month-long fiesta, at the end of which she promised to sponsor the 2010 festival. On March 5, Ash Wednesday, Gomez flew back to Union City. On March 7, she celebrated her 79th birthday with a surprise party.
The stroke hit Gomez March 8 while she sat with her friends at the mah-jongg table.
She was rushed to the intensive care unit at Fremont’s Washington Hospital. And here, her daughter says, is where her dignity ended. Jocson has worked as a Kaiser nurse for 25 years, and her brother Reynaldo Torres is a local doctor, so the numerous complaints they leveled in a recent letter to the hospital’s administration carry a little more weight than those of the average citizen. According to the letter, Washington nurses and physicians repeatedly expressed contempt and insensitivity toward the grieving family, casually dismissing their plaintive appeals and treating their mother like an inconvenience. When Jocson asked a nurse to improve her mother’s blood pressure with medication, the nurse replied that the attending physician said he “does not have time to deal with this crap.” When Gomez was finally declared brain-dead, the neurophysician gave the family the news by striding into a waiting room — filled with young children whom the family had spared information about their grandmother’s true condition — and proclaiming it to the rafters. When one of Gomez’ granddaughters was holding her hand and speaking what comfort she could summon, a nurse sauntered by and, according to the letter, “told her it was useless since she was already dead.” The granddaughter burst into tears and fled the room.
But it was when the family tried to say goodbye to their matriarch that Jocson claims the hospital staff was at its worst. Dozens of family members were stuck in the Philippines, cleaning up after the festival. When Washington doctors said that there was no hope of recovery, Jocson asked them to keep her mother on life support for 36 more hours, while the family assembled for the last rites. One nurse, Jocson claims, grumbled that “the hospital does not take care of dead people,” but said he’d think about it. The next day, as aunts, uncles, and grandchildren crowded into airport terminals on the other side of the world, hospital staff announced that Gomez’ ventilator would be shut off at the end of the day shift. Jocson had planned for a San Francisco priest who had grown up in her mother’s village to conduct the sacrament; now she couldn’t even find a Catholic hospital chaplain. What family there was gathered at Gomez’ bedside, silently murmuring their prayers. Five minutes into the last prayer they would ever say for their mother while she breathed, a nurse walked into the room, surgical gloves and instruments at hand, ready to pull the plug.
“It was not money that she had given to us,” Jocson says of her mother. “It was herself that she gave to us. It’s her services, her love, her care, her wisdom, everything. And no money in this world can buy it. So for me, in the last time in her life, she cannot even be given the last rites … it was too callous, too cold. Being on the other side of providing care, and being the receiver of the care, it is a very humbling experience. I thought to myself, ‘God, I hope I didn’t do that to people throughout my career.'”
Due to regulations that protect patient confidentiality, hospital spokesman Chip Brown won’t comment directly on the case of Felicidad Gomez. He can only point to his hospital’s brain-death guidelines, which stipulate that “except … for unusual humanitarian reasons, all forms of medical intervention (e.g., intravenous lines, ventilator, and so forth) should be removed after the physician has pronounced the patient dead.” But just what constitutes an “unusual humanitarian reason” will always be an unanswerable question, as are most of the unpleasant issues inherent in palliative care. Was the Gomez family’s request for a little more time really that unreasonable? Or is there something ghoulish about keeping a brain-dead woman’s heart beating so her family can be nearby when it finally stops? In a region such as the Bay Area, which grows more diverse by the day, what should a hospital do to accommodate the panoply of mortuary rituals and religious beliefs of its grieving clients?
Unfortunately, the East Bay’s medical establishment cannot begin to tackle these questions. Not because they cannot be answered, but because modern medicine has become so adept at prolonging our lives that it has put aside all questions of how to make our inevitable deaths meaningful.
It goes without saying that medical science has transformed our lives in the last century. Even in the last thirty years, advances in medicine have accomplished wonders. Genetic testing, radiology, chemotherapy, cholesterol-fighting drugs, angiography and heart catheterization — all of these breakthroughs have reduced the mortality rate of cancer and heart disease, pushing our life expectancy past age 76. But along the way, medicine has left something behind. When death was a more frequent affair, we were forced to come to terms with it early in life, as grandparents and uncles died at home, surrounded by an extended family that watched over them. Now, we have the luxury of putting off death, but we’ve become so focused on fighting mortality that we pay scant attention to dying well, to coming to terms with our lives and the people we love before the inevitable occurs. The experience of death has been reduced to an afterthought, an ellipse.
Kate Scanell, a geriatrics physician who sits on Kaiser Permanente’s ethics board, says that in many ways, our country has left the dying behind in its rush toward all things youthful and dynamic. As families have fragmented, our culture has grown obsessed with youth, and women have entered the workforce full-time, the traditional social networks we once relied upon at the end of our lives have degraded irreparably. The local hospital is just about the only institution left that’s charged with caring for the dying, Scanell says. “Nowadays, most people die in a technical setting, even though they don’t want to,” she says. “They’re afraid of burdening their families; they’re coming to technology centers like hospitals because the social and family support has eroded.”
Unfortunately, medical science reflects the country’s social priorities; if the national culture is more concerned with youth and prolonging life than in dying well, so too are hospitals. “Doctors and nurses reflect the society in which they live,” she says. “All of us, patients and doctors both, have been enamored of health care. The television shows are action-packed adventure movies. … Doctors have a very hard time talking about death sometimes, and so do patients, and sometimes it feels as if there’s a surface contract not to talk about it. And people come through hospitals so fast now that it’s very difficult to establish a relationship with someone and discuss death when you’re coming in for so short a time.”
There’s even a term for this in medical literature, notes Michael Rabow, an attending physician in the palliative care ward of UCSF’s Moffitt/Long hospital, who coedits a column on palliative care for the Journal of the American Medical Association. It’s called the “medicalization” of death. “Science and technology held such promise that death could be defeated with just a little more technology,” he says. “It’s a false hope, but death is now seen as a failure of medical science. Neither our culture nor medicine has gotten comfortable with death as a part of life. In avoiding death, medical culture has not succeeded in paying attention to how people die as well as possible.”
Two recent phenomena have mitigated this aversion to confronting mortality. The hospice movement, which began in force in the late ’70s, offered a more comforting alternative to dying in a hospital, and focused on reflection and acceptance of death. And if medical breakthroughs led to a social denial of mortality, it took the AIDS epidemic — which cut short the lives of thousands of young people — to force the medical establishment to once again consider the quality of death as part of the services it offers. Doctors and nurses were forced to redefine what constitutes a patient’s family, to come to terms with the ambivalence of many gay patients toward religious traditions that often rejected them. In short, medical professionals were forced to deal with all the nuances human beings can summon at the end of their lives.
Despite the lessons of the epidemic, the medical industry is still woefully ill-equipped to comfort the dying, even as the challenge grows more complex than ever. Today, Bay Area hospices and hospitals must account for cultural and religious attitudes toward death that they never had to confront before. According to Marie Quinn, a registered nurse at San Leandro’s Heartland Home Health Care and Hospice, employees often have to understand different immigrant cultures before they even pay their first visit to a new client. “For example, when we go to a Chinese home, you often never give medical information to the woman, you always give it to the male,” she says. “Even the male children, you always give information to them first.” Quinn has to know that Jehovah’s Witnesses will refuse all spiritual counseling, that Mormons must be dressed in temple death garb, that Muslims must be buried within 24 hours of death — a dizzying array of religious and cultural practices that she and her colleagues had never encountered before.
“We see patients as autonomous, who have the right to make their own decisions,” Rabow says. “But across the world, people see themselves as integrated into a larger family and make decisions in that context. For example, an adult male child may approach a physician and say, ‘Don’t tell my mother she has cancer.’ That’s incredibly common, but American physicians are uncomfortable with that.”
Doctors and nurses have to keep in mind that each person makes his death his own. Patients may be afraid of pain, or agonize over the terrible things they said to their children, or ask why God is doing this to them. The only tool a physician can equip himself with is time, Rabow says. Time to build a relationship with patients, time to help them come to terms with dying and the conduct of their lives. “I’ll often ask a screening question, which is, ‘To whom will your death matter?'” he says. “It’s a difficult question, but it helps to give people an opportunity to talk about these issues.”
Unfortunately, time is exactly what modern medicine is cutting from its budget. As HMOs and hospitals have striven to cut costs, no longer do doctors oversee a patient’s overall treatment, admit them to hospitals when necessary, and actually visit them in the hospital and continue their care. Now, once patients are admitted to a hospital, their old doctors vanish from their lives, and a hospitalist takes over their care to the end. Increasingly, terminally ill patients no longer go through the process of dying with their regular physician, with whom they have developed a close personal bond. Instead, they are left to die with strangers. Their deaths are destined to be sterile affairs, nonevents, a flatline. And until modern medicine rethinks its approach to palliative care, this is the fate that awaits us all.
Felicidad Gomez is buried at the Hayward Mission, in the Chapel of the Chimes. Music plays there 24 hours a day.