End Of Chemotherapy Quotes

She wished she had cancer instead. She'd trade Alzheimer's for cancer in a heartbeat. She felt ashamed for wishing this, and it was certainly a pointless bargaining, but she permitted herself the fantasy anyway. With cancer, she'd have something to fight. There was surgery, radiation, and chemotherapy. There was the chance that she could win. Her family and the community at Harvard would rally behind her battle and consider it noble. And even if it defeated her in the end, she'd be able to look them knowingly in the eye and say good-bye before she left.

A landmark 2010 study from the Massachusetts General Hospital had even more startling findings. The researchers randomly assigned 151 patients with stage IV lung cancer, like Sara’s, to one of two possible approaches to treatment. Half received usual oncology care. The other half received usual oncology care plus parallel visits with a palliative care specialist. These are specialists in preventing and relieving the suffering of patients, and to see one, no determination of whether they are dying or not is required. If a person has serious, complex illness, palliative specialists are happy to help. The ones in the study discussed with the patients their goals and priorities for if and when their condition worsened. The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality.

The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. If end-of-life discussions were an experimental drug, the FDA would approve it.

By not talking about death with our loved ones, not being clear through advanced directives, DNR (do not resuscitate) orders, and funeral plans, we are directly contributing to this future ... and a rather bleak present, at that. Rather than engage in larger societal discussions about dignified ways for the terminally ill to end their lives, we accept intolerable cases like that of Angelita, a widow in Oakland who covered her head with a plastic bag because the arthritic pain of her gnarled joints was too much to bear. Or that of Victor in Los Angeles, who hung himself from the rafters of his apartment after his third unsuccessful round of chemotherapy, leaving his son to discover his body. Or the countless bodies with decubitus ulcers, more painful for me to care for them even babies or suicides. When these bodies come into the funeral home, I can only offer my sympathy to their living relatives, and promise to work to ensure that more people are not robbed of a dignified death by a culture of silence.

They also received much less aggressive care at the end of their lives, with fewer rounds of chemotherapy and longer hospice stays. But the researchers were surprised to find something else. The palliative care group survived for an average of 11.6 months, compared to 8.9 months for the control group.30

An unhealthy life is destined to end with an unhealthy death.

The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer.

We do not consider the many causes of weight loss. We don’t remember troubling weight loss is sometimes prompted by grief from a breakup, divorce, or death. We don’t think about weight loss caused by cancer or chemotherapy. We don’t consider that the person in front of us might be going through a medical crisis, their weight loss a sign of abrupt and troubling change rather than hard-fought victory. And we don’t consider that weight loss is sometimes linked to declining mental health or a new wave of disordered eating. In our eagerness to compliment what we assume is desired weight loss, many of us end up congratulating restrictive eating disorders, grief, and trauma in the process, revealing that we are in a constant state of surveillance, monitoring and assessing the bodies of those around us. We keep our disappointment and displeasure quiet, revealing our disapproval of fatness only in our celebration of thinness.

Some years ago I saw a documentary on dying whose main theme was that people die as they lived. That was Jimmy. For five years, since he began undergoing operations for bladder cancer and even after his lung cancer was diagnosed, he continued the activities that he considered important, marching against crackhouses, campaigning against the demolition of the Ford Auditorium, organizing Detroit Summer, making speeches, and writing letters to the editor and articles for the SOSAD newsletter and Northwest Detroiter. In 1992 while he was undergoing the chemotherapy that cleared up his bladder cancer, he helped form the Coalition against Privatization and to Save Our City. The coalition was initiated by activist members of a few AFSCME locals who contacted Carl Edwards and Alice Jennings who in turn contacted us. Jimmy helped write the mission statement that gave the union activists a sense of themselves as not only city workers but citizens of the city and its communities. The coalition’s town meetings and demonstrations were instrumental in persuading the new mayor, Dennis Archer, to come out against privatization, using language from the coalition newsletter to explain his position. At the same time Jimmy was putting out the garbage, keeping our corner at Field and Goethe free of litter and rubbish, mopping the kitchen and bathroom floors, picking cranberries, and keeping up “his” path on Sutton. After he entered the hospice program, which usually means death within six months, and up to a few weeks before his death, Jimmy slowed down a bit, but he was still writing and speaking and organizing. He used to say that he wasn’t going to die until he got ready, and because he was so cheerful and so engaged it was easy to believe him. A few weeks after he went on oxygen we did three movement-building workshops at the SOSAD office for a group of Roger Barfield’s friends who were trying to form a community-action group following a protest demonstration at a neighborhood sandwich shop over the murder of one of their friends. With oxygen tubes in his nostrils and a portable oxygen tank by his side, Jimmy spoke for almost an hour on one of his favorite subjects, the need to “think dialectically, rather than biologically.” Recognizing that this was probably one of Jimmy’s last extended speeches, I had the session videotaped by Ron Scott. At the end of this workshop we asked participants to come to the next session prepared to grapple with three questions: What can we do to make our neighborhoods safe? How can we motivate people to transform? How can we create jobs?

To get the most out of this chapter, first find where you are on this map of the cancer journey: Critical stress points. When you have just been diagnosed with cancer or learned that your cancer has recurred or is not responding to treatment. Treatment preparation. When you are anticipating surgery, radiation, chemotherapy, or molecular target therapies. Side effect management. When you are undergoing treatment and need ways (instead of or in addition to drugs) to manage its side effects. Post-treatment. When you are adjusting to the end of active treatment, usually after the final chemotherapy cycle. This situation can, perhaps surprisingly, prove quite stressful. Remission maintenance. Although definitely good news, remission introduces its own issues, most notably fear of recurrence. Remission is also when you will be most determined to take back your life from cancer.

The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in the priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now—much as

A landmark 2010 study from the Massachusetts General Hospital had even more startling findings. The researchers randomly assigned 151 patients with stage IV lung cancer, like Sara’s, to one of two possible approaches to treatment. Half received usual oncology care. The other half received usual oncology care plus parallel visits with a palliative care specialist. These are specialists in preventing and relieving the suffering of patients, and to see one, no determination of whether they are dying or not is required. If a person has serious, complex illness, palliative specialists are happy to help. The ones in the study discussed with the patients their goals and priorities for if and when their condition worsened. The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. If end-of-life discussions were an experimental drug, the FDA would approve it.

SUSAN BLOCK AND her father had the conversation that we all need to have when the chemotherapy stops working, when we start needing oxygen at home, when we face high-risk surgery, when the liver failure keeps progressing, when we become unable to dress ourselves. I’ve heard Swedish doctors call it a “breakpoint discussion,” a series of conversations to sort out when they need to switch from fighting for time to fighting for the other things that people value—being with family or traveling or enjoying chocolate ice cream.

twenty-nine-year-old patient she had recently cared for who had an inoperable brain tumor that continued to grow through second-line chemotherapy. The patient elected not to attempt any further chemotherapy, but getting to that decision required hours of discussion, for this was not the decision he had expected to make. First, the oncologist said, she had a discussion with him alone. They reviewed the story of how far he’d come, the options that remained. She was frank. She told him that in her entire career she had never seen third-line chemotherapy produce a significant response in his type of brain tumor. She had looked for experimental therapies, and none were truly promising. And, although she was willing to proceed with chemotherapy, she told him how much strength and time the treatment would take away from him and his family. He did not shut down or rebel. His questions went on for an hour. He asked about this therapy and that therapy. Gradually, he began to ask about what would happen as the tumor got bigger, what symptoms he’d have, what ways they could try to control them, how the end might come. The oncologist next met with the young man together with his family. That discussion didn’t go so well. He had a wife and small children, and at first his wife wasn’t ready to contemplate stopping chemo. But when the oncologist asked the patient to explain in his own words what they’d discussed, she understood. It was the same with his mother, who was a nurse. Meanwhile, his father sat quietly and said nothing the entire time. A few days later, the patient returned to talk to the oncologist. “There should be something. There must be something,” he said. His father had shown him reports of cures on the Internet. He confided how badly his father was taking the news. No patient wants to cause his family pain. According to Block, about two-thirds of patients are willing to undergo therapies they don’t want if that is what their loved ones want.

The oncologist went to the father’s home to meet with him. He had a sheaf of possible trials and treatments printed from the Internet. She went through them all. She was willing to change her opinion, she told him. But either the treatments were for brain tumors that were very different from his son’s or else he didn’t qualify. None were going to be miraculous. She told the father that he needed to understand: time with his son was limited, and the young man was going to need his father’s help getting through it. The oncologist noted wryly how much easier it would have been for her just to prescribe the chemotherapy. “But that meeting with the father was the turning point,” she said. The patient and the family opted for hospice. They had more than a month together before he died. Later, the father thanked the doctor. That last month, he said, the family simply focused on being together, and it proved to be the most meaningful time they’d ever spent.

an average of $94,000 during the last year of life with a metastatic breast cancer. Our medical system is excellent at trying to stave off death with $12,000-a-month chemotherapy, $4,000-a-day intensive care, $7,000-an-hour surgery. But, ultimately, death comes, and few are good at knowing when to stop.

pay doctors to give chemotherapy and to do surgery but not to take the time required to sort out when to do so is unwise.

By this point, Sara had undergone three rounds of chemotherapy with limited, if any, effect. Perhaps Marcoux could have discussed what she most wanted as death neared and how best to achieve those wishes.

discussion. It now seemed possible that team-based palliative care extended life to a degree comparable to newer immune-based chemotherapy drugs that may cost $6,000 to $10,000 per month and can cause rashes, bleeding, infection, and other life-threatening side effects. In contrast, team-based palliative care for a patient and family typically costs several hundred dollars per month and does not cause rashes, bleeding, or infections.

Oncologists tend to start with the most effective chemotherapy they have for a patient’s cancer. Second-, third-, and fourth-line treatments may be less effective or carry more side effects. When cancer grows despite chemotherapy or when it recurs, the situation may become one of diminishing returns on a person’s investment of limited time and energy. Since most chemotherapy affects normal cells as well as cancer cells, these medications can take a toll on one’s general health—something I know you know all too well.” “I know this in my head, Dr. Byock,” Paul

those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer.

not the difference between treating and doing nothing, she explained. The difference was in the priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now—

Taking all this in was clearly overwhelming to both daughter and father. And toward the end of the conversation, it became rather difficult to explain the principles of chemotherapy in the level of detail I would have wanted had we only more time with patients.

we pay doctors to give chemotherapy and to do surgery but not to take the time required to sort out when to do so is unwise. This certainly is a factor. But the issue isn’t merely a matter of financing. It arises from a still unresolved argument about what the function of medicine really is—what, in other words, we should and should not be paying for doctors to do.

the case of Nelene Fox. Fox was from Temecula, California, and was diagnosed with metastatic breast cancer in 1991, when she was thirty-eight years old. Surgery and conventional chemotherapy failed, and the cancer spread to her bone marrow. The disease was terminal. Doctors at the University of Southern California offered her a radical but seemingly promising new treatment—high-dose chemotherapy with bone marrow transplantation. To Fox, it was her one chance of cure. Her insurer, Health Net, denied her request for coverage of the costs, arguing that it was an experimental treatment whose benefits were unproven and that it was therefore excluded under the terms of her policy. The insurer pressed her to get a second opinion from an Independent medical center. Fox refused—who were they to tell her to get another opinion? Her life was at stake. Raising $212,000 through charitable donations, she paid the costs of therapy herself, but it was delayed. She died eight months after the treatment. Her husband sued Health Net for bad faith, breach of contract, intentional infliction of emotional damage, and punitive damages and won. The jury awarded her estate $89 million. The HMO executives were branded killers. Ten states enacted laws requiring insurers to pay for bone marrow transplantation for breast cancer. Never mind that Health Net was right. Research ultimately showed the treatment to have no benefit for breast cancer patients and to actually worsen their lives. But the jury verdict shook the American insurance industry. Raising questions about doctors’ and patients’ treatment decisions in terminal illness was judged political suicide.

The other half received usual oncology care plus parallel visits with a palliative care specialist. These are specialists in preventing and relieving the suffering of patients, and to see one, no determination of whether they are dying or not is required. If a person has serious, complex illness, palliative specialists are happy to help. The ones in the study discussed with the patients their goals and priorities for if and when their condition worsened. The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. If end-of-life discussions were an experimental drug, the FDA would approve it.