Controversial End-of-Life Care Bill Amended in California

Allison Gandey

July 04, 2008

July 4, 2008 — The California State Legislature in the United States has amended an end-of-life care bill, known as the Right to Know Act. Bill 2747 is designed to improve information and counseling for patients and, on Thursday, was amended after passing a senate committee. But the controversial bill also encourages the use of palliative sedation and voluntary patient starvation and dehydration. It has been opposed by a number of groups, including the Association of Northern California Oncologists.

The amended bill no longer includes references to euthanasia and is expected to move to the senate floor later this month or next.

End-of-life care has been making headlines for a couple of months, and 2 recent studies have fueled the debate. In June, investigators presenting at the American Society of Clinical Oncology (ASCO) 44th Annual Meeting pointed out that many physicians are concerned that end-of-life discussions will distress terminally ill patients and offer no benefit.

The research team, led by Alexi Wright, MD, from the Dana-Farber Cancer Institute, in Boston, Massachusetts, conducted a prospective, longitudinal, multi-institutional study of 603 advanced cancer patients.

The researchers reviewed charts and interviewed patients at enrollment and followed them until death. The group found that end-of-life care discussions between doctors and patients were not associated with psychological distress.

Talking About Death Did Not Increase Anxiety

"These discussions may result in increased patient understanding of illness severity, fewer invasive procedures, and lower rates of intensive-care-unit admission at the end of life," Dr. Wright said at the ASCO meeting.

Interestingly, only 188 of the 603 advanced cancer patients reported having had end-of-life discussions with their doctors.

Asked by Medscape Oncology to comment on the work, Michael Sharpe, MD, from the University of Edinburgh, in Scotland, said he isn't surprised to hear that doctors are struggling with this issue. "We used to debate whether or not to tell patients they even had cancer. Today, it is common practice to inform, but now we question whether or not we should tell them they are dying."

On that point, Dr. Sharpe suggests there is no one-size-fits-all approach. "We can't assume that all patients want to know," he said. "But we also need to provide the information to those who want it." Dr. Sharpe recalls that, on medical school exams, the words "always" or "never" in a multiple choice question usually signaled a wrong answer. It is a concept that has carried over into practice and remains true, he said.

No One-Size-Fits-All Approach for Patients: Some Don't Want to Know

About a week after the presentation at ASCO, and in a separate effort, experts reporting in the June 11, 2008 issue of the Journal of the American Medical Association discussed approaches to communication about prognosis and cancer-treatment options at the end of life.

"Palliative care and oncology clinicians should be logical partners in caring for patients with serious cancers for which symptom control, medically appropriate goal setting, and communication are paramount," write Sarah Elizabeth Harrington, MD, and Thomas Smith, MD, from the Massey Cancer Center of Virginia Commonwealth University, in Richmond.

They note that patients face difficult decisions about chemotherapy near the end of life. Such treatment might prolong survival or reduce symptoms, but it might also cause adverse effects, and prevent the patient from engaging in meaningful life review and preparing for death. The authors worry it might also preclude admission to hospice care.

The authors point out that patients can be vulnerable to "fastening on slim hopes." In 1 study, highly educated and motivated patients enrolled in phase 1 studies at the National Cancer Institute said that they would be willing to take an experimental drug — with a 10% mortality rate — for an unknown small chance of benefit.

"Oncologists must improve their skills in helping patients think clearly about the appropriateness of chemotherapy ," write Drs. Harrington and Smith. "The conundrum for today's oncologist is that moving on to third- or fourth-line chemotherapy may be easier than discussing hospice care; the patient and family may be less upset, and they may prefer to not discuss the issue with the oncologist."

They add: "Adverse effects of chemotherapy may be minimal, discussions take more time, and chemotherapy intervention is better compensated than discussions."

Oncologists Must Improve Skills

During an interview with Medscape Oncology, Kathryn Tucker, director of legal affairs for Compassion and Choices, the organization that sponsored the new bill in California, said that she is concerned that physicians have a tendency to remain focused on cure, long after it is appropriate to do so and at great cost and burden to patients.

"There comes a point when it is the physician's responsibility to provide comfortable symptom management to enable patients to spend quality time with loved ones," she said. "When there is no hope for a cure, we must help patients to ensure that the dying process is as peaceful and comfortable as it can be."

Compassion and Choices is reportedly the oldest and largest organization in the United States supporting legal aid in dying. And although the euthanasia debate is heating up in California, proponents on both sides seem to be sending a message to oncologists that patient care can be improved.

"Even clinicians who are well trained and skilled at giving bad news can find it burdensome and emotionally difficult," Drs. Harrington and Smith pointed out in their JAMA article.

The authors provide some dos and don'ts for advising patients with advanced cancer. A summary of their recommendations appear below. They note that "at the very least, finding out how much a patient wants to know and then providing that information should be addressed by all clinicians."

Advising About Chemotherapy for Advanced Cancer: Dos and Don'ts

Do Don't Comment
Ask patients how much they want to know Don't assume people won't want to know Most patients want to know their prognosis and options
Define "response" and "cure"   Patients can mistake a 20% response for a 20% chance of cure
Make a list of the benefits and adverse effects of chemotherapy Don't assume that patients will know their odds of being helped There must be some definable benefit before chemotherapy is justified
Ask patients their goals   Two months can be critical to some people and unimportant to others
Discuss what to do if or when the cancer becomes resistant to chemotherapy   Tell patients that at some point, the disease might advance; they should be aware that the disease could become fatal
Make sure patients understand that even if the cancer is shrinking, it is still there Don't tell patients the cancer is responding without explaining how long the response will likely last It is important to describe what is likely to happen so that people can make plans
Be hopeful, even if the disease is progressing   Most people can be hopeful about something, even if their cancer is growing
Discuss do-not-resuscitate orders   When you tell a patient that the cancer is growing and could be fatal, ask how much they want to know
Discuss hospice care when there are still options, not at the end of life Don't ask hospice care to manage only acute home deaths Make hospice care part of routine cancer care
Monitor hospice-stay durations of patients and the number that die within 7 days of admission to hospice care   Make performance improvement a goal; try to meet or exceed the national hospice-stay duration
Let patients know you will not abandon them if they enroll in hospice care   Continue to make regular appointments for hospice patients; if they are too sick to attend, it is a good reminder to telephone or visit them

Source: Harrington SE, Smith TJ. JAMA. 2008;299:2667-2678.


The researchers have disclosed no relevant financial relationships.

American Society of Clinical Oncology (ASCO) 44th Annual Meeting: Abstract 6505. Presented June 2, 2008.

JAMA. 2008;299:2667-2678. Abstract


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