Stories about shortcomings the health care failures abound. For most of us, these stories happen to other people, in situations we are not likely to experience ourselves. But the story of Marianne Matzo and her late sister, Joan, is reminder that getting good care at the end of life is often hit or miss, and bad care can affect any one of us. Marianne Matzo is a Project On Death in America scholar, an expert on palliative care with a doctorate degree in gerontology. Despite her own expertise and experience, she was unable to force the health care system to provide the kind of care that would have alleviated her sister’s suffering. Matzo’s story of the final months of her sister’s life illustrates just why change and improvement are so important--and why we have so far yet to go.
In 1998, 55-year old Joan Matzo was diagnosed with uterine cancer. She died in September 2002, after metastatic cancer obliterated her esophagus and trachea. Joan was a Montessori educator, an artist and master gardener, a wife, mother, and grandmother. In short, she was like millions of American women. Over the course of her sister’s illness, Marianne traveled to Joan’s home in Michigan several times. There, she ran up against the barriers to pain and symptom management that create suffering for thousands of sick people each and every day. Health care providers did not treat Joan’s pain, nor did they address her respiratory distress as the tumor invaded her airway.
As Marianne explains, “Vicodin was the only drug prescribed for her. When she finally insisted that this drug was not treating her pain, Fentanyl patches were ordered. At $100 per patch, she was unable to afford this medication….I consulted with colleagues who are palliative care experts; they recommended Methadone as a very low cost (17 cents/day) but effective treatment.” Joan’s providers refused to try this option. Joan was given morphine only when Marianne went to her sister’s bedside and insisted that her pain be treated.
“Had physicians with expertise in palliative care been consulted, Joan would not have been allowed to endure this pain and suffering that had severely affected what were to be the last few months of her life,” Marianne says. “It should not be up to the expertise that the patient’s family actually provided, especially when palliative care services are available.”
Toward the end of Joan’s life, doctors sent Joan and Marianne home; Marianne was given a purseful of Ativan and morphine, and telephone backup from the fellow. Still, no palliative care. Oncologists, Marianne points out, do not make housecalls. Marianne could get no one to help. Hospice would not take her because she was still taking some palliative chemotherapy and she had no insurance. The doctor who had given chemotherapy just one day earlier would not come to the home and would not prescribe anything stronger.
There simply were no services that could help. Marianne was at her wit’s end. She simply had to be the nurse. Within 48 hours, Joan was dead. “This was a long 48 hours to be her only nurse, as well as her sister, coping with my own grief and despair at watching Joan die. All of my expertise in hospice and palliative care did not prepare me for the intensity and responsibility of this experience, helping my sister when she had been abandoned by all of those who were supposed to be providing ‘care.’” Marianne says.
Modern medicine can treat the kinds of pain Joan endured. Good hospice care at home would have made a real difference – relieving the feeling of suffocation and supporting the family. Even a good home visit by a doctor would have made a difference. And yet, stories like hers remain commonplace. According to ABCD President Joanne Lynn, “It is easier to get open heart surgery than it is to get a home health aide or methodone.” Most dying patients cannot count on the health care system to provide for essentials such as ready pain relief, continuity of services and providers, a safe and comfortable environment, and help with planning for the future.
“The usual nursing home resident with serious pain gets no pain relief. The average person with an eventually fatal illness has not been offered the opportunity to refuse resuscitation efforts. Even the one-fifth of dying people who use hospice services ordinarily enroll less than a month before dying--hardly time enough to receive the full benefit of hospice care,” she says.
What can be done to prevent others from suffering as Joan did? In 2001, the National Cancer Policy Board released Improving Palliative Care for Cancer, a report that describes problems in cancer palliative care, and recommends ten steps to improving that care. Among the recommendations are requirements for the National Cancer Institute to increase its focus on palliative care and symptom control, by designating that some of its cancer care centers as centers of excellence in palliative care. “What good does it do to aggressively treat cancer and ignore pain, ongoing weight loss, inability to swallow, dehydration, fatigue, and dyspnea?” Marianne says. “It is bad enough to have cancer, but do people’s lives have to be further compromised because the health care practitioners taking care of them don’t know how to manage treatable symptoms?” Joan’s family also encountered problems in accessing hospice services to care for her, primarily because of the way hospice care is funded. Currently, certain palliative treatments--treatments that are meant to reduce symptoms, not to cure diseases--are not affordable under the Medicare hospice benefit. Joan was receiving palliative chemotherapy to reduce the tumor in her airway. According to Marianne, three area hospices refused to take Joan, primarily because, as one director told the family, “….hospices cannot afford to have patients on chemotherapy.” Joan had to choose between giving up chemo or being admitted to hospice; she chose to continue the chemotherapy because it enabled her to breathe.
The Cancer Policy Board recommended changes in this area too, noting that “practices and policies that govern payment for palliative care … hinder delivery of the most appropriate mix of services for patients who could benefit from palliative care during the course of their illness and treatments.”
“What a choice,” Marianne says. “What a health care system that makes people choose between the intervention that is slowing the tumor that is cutting off their airway, and hospice services that would help [the patient] and family through a difficult death.”
In a letter Marianne sent to the director of the facility where Joan was treated, she urged him to “develop a system that better facilitates each patient’s ability to live life fully until they die.”
ABCD has long urged doctors and other health care providers to think about making seven basic promises to patients and their families, promises that might avoid the pain and suffering Joan endured. These promises (which can be read online at http:// www.abcd-caring.org) cover issues such as pain and symptom management and advance care planning. More to the point, they enable doctors and others to see what they can’t promise today, and to think about ways to change practices so that they can make and keep promises.
“People don’t become doctors and nurses so that they can torture patients! They want to serve others--and most of the time, we do. But sometimes, we – physicians, other caregivers, and society--need to look at what we do and figure out how to do it better,” Dr. Lynn says. “When a doctor realizes she cannot promise pain relief, or that she cannot promise continuity of care, then she realizes that something has to change. When our leaders realize that the costs of caregiving bankrupt families, they begin to understand that the false promises of today’s health care system cannot continue.”
In the world envisioned by Lynn and her colleagues, and advocates for better end-of-life care, Joan’s death would not have been avoided, but it would not have entailed additional suffering for Joan and for her family. It would create an environment in which each person lived fully until death, and each family can count on the help they need. Stories such as this one are the reason our work at ABCD remains so important, and so essential.