Improving Care for the End of Life, Online Edition The Palliative Care Policy Center

Sourcebook : Improving Care for the End of Life : 14.0 Opportunities to Improve Care for Cancer Patients

Even if you're on the right track, you'll get run over if you just sit there.
- Will Rogers

Many of the improvements in end-of-life care over the past 20 years began with attempts to improve the care of cancer patients. As the hospice movement began to promote a more holistic approach to care of the dying, health care providers applied hospice techniques to cancer patients farther from death and to patients with noncancer diagnoses. Today, people who suffer from a range of terminal illnesses benefit from practices first developed in cancer treatment and symptom management. For instance, although hospice originally focused on the needs of terminally ill cancer patients, its efforts to reduce cancer pain have driven the routine and aggressive use of opioids for serious pain. Much of what is known about medical management for symptoms such as dyspnea, terminal agitation, and bowel obstruction comes from efforts to relieve these symptoms in cancer patients. Treatment modalities such as long-acting opioids, transdermal drug delivery systems, and palliative radiation and chemotherapy have been developed primarily to meet the needs of cancer patients.

Cancer holds a unique place in medicine in general and in American society in particular. Medicine has waged war against cancer, and our language surrounding cancer treatment reflects this battle. Indeed, in the 1970s, the government declared war on cancer and directed millions of dollars to find ways to prevent and cure the disease. Like warriors, people whose cancer is cured or in remission are "survivors"; others "lose the battle" and die, generally following a rather predictable path to death.

Cancer has a special terror for many people. When cancer is diagnosed late in disease or is widespread, patients inevitably die. Cancer can seem to come from anywhere - lifestyle, environmental hazards, workplace hazards, or genetic weaknesses. Unseen enemies can be frightening, especially when one cannot hide.

Cancer is the second leading cause of death in adults in the United States. In 2000, more than a half million men and women are expected to die of cancer. Lung, colon, breast, and prostate cancer are expected to account for more than half of these deaths (Greenlee et al., 2000). While research to prevent and control cancer continues, the number of cancer deaths has risen over the years and may continue to do so as the graying of America continues.

Although hospice programs serve many patients who are dying of cancer, a large majority of cancer patients continues to die in hospitals and nursing homes, without the benefit of hospice and palliative care. Of the 2.27 million people who died in 1993, only 256,900 received hospice services (Christakis and Sachs, 1996). The National Hospice Organization reports that in 1998, hospice served 540,000 patients (NHO, 1998), or about 23.17 percent of the 2.33 million deaths that year (NCHS, 1999). In fact, the National Center for Health Statistics reports that of the 2.28 million people who died in 1994, 55 percent were in hospitals and 19 percent were in nursing facilities. Almost all who die with hospice care die at home (IOM, 1997).

Hospice referrals come late in the course of the disease; in 1995, the median length of hospice stay was only 29 days. Some patients come to hospice in the final days or hours of their lives, making it almost impossible for hospice to learn enough about patients and families to provide quickly and smoothly the kinds of supportive care needed.

In This Chapter

Earlier chapters featured improvement strategies for particular symptoms or problems, all of which bear some relationship to cancer. This chapter looks at a few ideas that are specific to cancer care, and readers are referred to earlier chapters for suggestions on pain and symptom management, advance care planning, continuity of care, and spirituality and bereavement. Here we highlight:

  • Using quality improvement strategies to improve symptom management
  • Setting "checkpoints" during the course of treatment to review patient goals and preferences
  • Appreciating the benefits of doing "nothing"
  • Measuring quality of life as an end point of treatment
  • Increasing culturally appropriate end-of-life care
  • Reducing the number of hospital deaths
  • Increasing referrals to hospice
  • Innovators Need to Know

    The challenges in improving end-of-life care for cancer patients are complex and interrelated. Treatment checkpoints will be useless if "doing nothing" or "giving up" is the only alternative to staying the course. Undesired in-hospital deaths will not decrease unless alternatives are readily available. Underserved populations will enroll in hospice only if hospices address the needs of these populations. Even so, innovators in end-of-life care can begin to change the field by improving its elements.

    • Cancer continues to hold a special place in our culture - one in which people can be immobilized by their fears and misconceptions.
    • Most work in improving end-of-life care has been done with cancer patients, so there is an array of information from which to draw.
    • Innovators can use basic strategies described throughout this book to improve care for cancer patients and their families.

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    This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.

    For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].

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