ASCO Experts Discuss Position Statement on Improving End-of-Life Care

Leaders of the American Society of Clinical Oncology (ASCO) discussed the society’s comprehensive position statement calling for the removal of all barriers to high-quality end-of-life care. ASCO’s recommendations include greatly expanded access to care, more intensive physician training, and increased research attention to the problem. The statement was discussed during a special Presidential Symposium at the society’s 34th Annual Meeting and was published in the Journal of Clinical Oncology.

The statement, entitled "Cancer Care During the Last Phase of Life," developed over the last year by a 20-member panel of oncologists and other cancer professionals, identifies the leading barriers to providing high-quality end-of-life care and the specific steps needed to improve care for the nearly 50% of cancer patients who do not survive the disease.

The statement does not take an official position on physician-assisted suicide, citing widely varying beliefs in the professional community and among the public. ASCO stresses that physician-assisted suicide remains an extremely rare event, and often results from inadequate pain control or depression--symptoms that can and should be relieved through better palliative care and psychosocial support.

ASCO also released the results of a nationwide survey of physician practices in caring for terminally ill cancer patients. The survey of 3,200 oncologists addressed topics ranging from pain management to physician-assisted suicide.

"Most people when nearing death want empathetic care that preserves their dignity," said Dr. Robert J. Mayer, president of ASCO, who has made improved end-of-life care a major focus of his presidency. "It is oncologists’ professional responsibility to care for patients from diagnosis throughout the course of illness, including the last phase of life. Better physician education, greatly expanded research on end-of-life care, and relief from the economic burden of caring for the terminally ill must be aggressively addressed."

Barriers to High-Quality End-of-Life Care

The ASCO position statement identifies the most significant obstacles to improving end-of-life care of cancer patients, and proposes a series of remedies:

1. Remove economic barriers.

Reform national health care policies to ensure the availability of technically expert and humane end-of-life care for all Americans.

Improve the reimbursement policies of public and private insurers to eliminate the disincentives to physicians to make timely referrals of patients to hospice and other forms of end-of-life care.

Adequately cover the costs of end-of-life care--especially pain medications--without onerous copayment arrangements. (For example, a 20% copayment on $4,000 per month for at-home continuous infusion morphine is highly prohibitive.)

2. Physician-assisted suicide is infrequent; points to inadequate end-of-life care.

The ASCO statement neither supports nor condemns physician-assisted suicide, calling the practice a "complex and subtle issue," which "for the time being must be resolved on a case-by-case basis between the patient and the physician and existing law."

Because of its infrequency, and widely varying beliefs in the professional community and among the public, ASCO feels that the most important response to the public debate over physician-assisted suicide is threefold:

Take every responsible measure to ensure that all physicians are well-trained in optimal end-of-life care, including symptom management and psychosocial issues.

Educate the public about their options for end-of-life care.

Remove all barriers to the delivery of optimal end-of-life care.

3. Better educate physicians.

Inappropriate attitudes of physicians toward death, poor doctor-patient communication, and the insistence on active anti-cancer treatment beyond its usefulness by some physicians, pose significant barriers to effective care.

Education of physicians and other health care providers must be improved through training programs and formal curricula in the following areas:

Symptom management

Recognition when anticancer therapy will not help

Techniques of palliative care

Effective communication with the patient/family

Ethical issues that arise during end-of-life care

Psychosocial support

Teaching of leadership skills to physicians in order for them to direct the team of end-of-life care.

4. Greatly expand investigative efforts into physical, psychological and socioeconomic issues.

Research into the many aspects of end-of-life care is virtually nonexistent, and is urgently needed in the areas of:

Depression and other mental health symptoms

Impact of spirituality

Communication--how to talk truthfully to patients and their families about illness, treatment possibilities, prognosis, and advanced care planning, without removing hope

Caregiving burdens

Economic burdens

Bereavement

5. Expand and support hospice programs.

Hospice--where terminally ill patients are provided with expert, comprehensive end-of-life care at home or in a home-like setting--is the best developed model for end-of-life care in the US health care system but remains severely underutilized. The most significant barriers to increased use of hospice include nonreferral by the primary physician, late referral, and ineffective collaboration between the physician and hospice.

Physicians must better recognize when anticancer therapy will no longer be effective and more assiduously pursue a discussion of end-of-life care options (hospice) with patients. Physicians must also be more willing to relinquish or share authority in a patient’s care to hospice programs, and to ensure that patients are referred in a timely manner, when palliation will be most effective.