Promoting Excellence : Living and Dying Well with Cancer : Introduction

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Caregiver examining patient.Too many patients with cancer suffer needlessly at the end of their life. Focus on the cure too often has diverted attention from the care that patients need. As the National Cancer Policy Board (NCPB) of the Institute of Medicine noted in its 2001 report, Improving Palliative Care for Cancer: "Patients, their families and caregivers all suffer from the inadequate care available to patients in pain and distress."

In the last several years, leaders in American medicine have put forth a new and hopeful vision for improving the comfort and quality of life for patients with advanced cancer and their families. This vision recognizes that optimal care requires attention to multiple sources of distress that are common in illnesses such as advanced cancer. It foresees a continuum of cancer care in which palliative skills and services ease physical and emotional suffering and enhance the quality of cancer patients’ and families’ lives throughout the course of treatment.

The Institute of Medicine has played a leading role in defining this bright vision. Its 1997 report Approaching Death, and subsequent NCPB reports, including Ensuring Quality Cancer Care and Improving Palliative Care for Cancer, document the shortcomings in care for patients with advanced, incurable illness and identify barriers to quality care at the end of life. As the NCPB notes in Improving Palliative Care for Cancer: "There is no argument that palliative care should be integrated into cancer care from diagnosis to death, but significant barriers - attitudinal, behavioral, economic, educational and legal - still limit this needed care for a large proportion of people with cancer."

Collectively these reports call for policy changes and underscore the importance of research, including demonstration projects, to help chart the course.

The American Society of Clinical Oncology has also helped point the way to this new, comprehensive standard of care. In a 1998 policy statement it noted: "Cancer care optimizes quality of life throughout the course of an illness through meticulous attention to the myriad physical, spiritual and psychosocial needs of the patient and family." National health care philanthropies, creative, forward-thinking clinicians and researchers and cancer survivors themselves, have all contributed to crafting a vision of this comprehensive continuum of care and lent their voices to a chorus calling for change.

Since 1997, Promoting Excellence in End-of-Life Care, a national program of The Robert Wood Johnson Foundation, has worked to advance the agenda for better end-of-life care through an array of innovative projects. The program is based at The University of Montana, Missoula under the leadership of Dr. Ira Byock. It includes an ambitious and broad-based effort to systematically build and carefully evaluate innovative models for delivering palliative care. Twenty-two projects from across the country were selected from a pool of more than 700 grant applicants to create new models that expand access to services and improve quality of care. The grantees spanned a variety of care settings, diseases and patient populations.

This monograph reports on the results of the four Promoting Excellence in End-of-Life Care demonstration projects that tested models of concurrent anti-cancer treatment and palliative care for patients with advanced cancer. Specifically, these models challenged the so-called "terrible choice" that patients living with cancer in the United States typically face. Either they can pursue cancer treatments in hope of extending their lives or they can “give up” and accept hospice care to relieve symptoms and to provide emotional and spiritual support for them and their families through the end of life.

"There is no argument that palliative care, from diagnosis to death, should be integrated into cancer care."
- NCPB Report, Improving Palliative Care for Cancer

Hospice is currently the most developed and most available form of comprehensive palliative care, but Medicare regulations and many insurance companies’ policies limit hospice services to patients with a prognosis of six months or less and require patients to forego any treatments aimed at extending life. In practical terms, patients must either refuse any further cancer treatment or exhaust all available treatments to receive hospice services. This sequential arrangement – all available disease-modifying treatment and then referral to hospice for palliative care – denies needed services to many patients and families at the most difficult time in their lives.

This arbitrary forced choice between disease-modifying treatment and care focused on comfort and quality of life ignores the real needs and legitimate desires of patients with progressive cancer, their families and often their physicians. It defies the reality that patients often want to pursue even long-shot efforts to stem the course of the disease, including entering clinical trials of experimental therapies, while also receiving care directed at their comfort and support for their family. Instead, the price patients pay for “continuing to fight” is loss of access to comprehensive care for their and their families’ physical, emotional and spiritual needs. Many who do receive hospice services are typically served for about two weeks before death, too late for patients and families to fully benefit.

Successes in cancer research and treatment have transformed cancer from a disease that typically leads to death soon after diagnosis, as it was for most of the twentieth century, to a chronic disease that many patients live with for years. Still, at present, at least half of all people diagnosed with cancer will eventually die from the disease. The National Cancer Institute (NCI), which leads the nation's thirty-plus-year-old war on cancer, continues to focus solely on victory. It devotes less than 1% of its annual budget of about $4 billion to any aspect of symptom control, palliative care or end-of-life research, according to the NCPB report Improving Palliative Care for Cancer. As that report noted, “In accepting a single-minded focus on research toward cure, we have inadvertently devalued the critical need to care for and support patients with advanced disease.”

Surveys show that psychosocial issues are primary concerns among patients with life-limiting diseases such as cancer. Patients who are treated at one of our nation’s 39 NCI-designated Comprehensive Cancer Centers understandably assume that they will receive top-of-the-line care. Yet NCI awards the vaulted Comprehensive Cancer Center designation solely on an institution’s research prowess, and not on the basis of quality of care. As a result, patients who are dying from cancer, particularly those suffering from pain, fatigue, breathlessness or emotional distress, may find themselves and their families to be refugees in the war against cancer, feeling forgotten, abandoned and alone.

In the last several years, leaders in American medicine have put forth a new and hopeful vision for improving the comfort and quality of life for patients with advanced cancer and their families. This vision recognizes that optimal care requires attention to multiple sources of distress that are common in illnesses such as advanced cancer.

Demonstration Projects: Applying Theory to Health Service Delivery and Practice

The Institute of Medicine, its National Cancer Policy Board, The American Society of Clinical Oncology and a host of other leading voices in cancer care have called us to a new, higher vision that eliminates the “terrible choice.” Promoting Excellence in End-of-Life Care, in collaboration with leading institutions, clinicians and researchers around the country, has embraced the challenge of advancing that vision.

The four Promoting Excellence demonstration projects described in this monograph have translated theory into reality. Their efforts go directly to the questions of whether and how palliative care services can be integrated upstream in the continuum of cancer care.

Aggressive cancer care has been likened to a super-highway while hospice care is analogous to a country road. Meeting the challenge of concurrent care requires the melding of these very different curative and palliative cultures. Not surprisingly, some have wondered if it is feasible to merge the two. How can state-of-the-art cancer care with its focus on survival coexist with services that assist patients adapt to an uncertain future and support patients and families in planning and preparing for death? In a concurrent model of care, how will expanding access to palliative care affect quality of care? Will the additional services that palliative care provides result in excessive health care costs? How will palliative services that are associated with hospice care be received by patients, their families and providers?

Few studies have addressed these critical questions. The Promoting Excellence in End-of-Life Care demonstration projects described in this monograph begin to fill that void. Each project drew on the services of hospice to create unique integrated models of oncology treatment and palliative care. Together, they reached within a variety of settings, including NCI-designated Comprehensive Cancer Centers, community hospitals and community-based oncology practices.

The Ireland Cancer Center in Cleveland and the Hospice of the Western Reserve collaborated closely to provide palliative services within the oncology plan of care for lung cancer patients.

The University of California at Davis directly challenged the idea that patients enrolled in clinical trials could not receive concurrent palliative care services.

The Comprehensive Cancer Center at the University of Michigan and Hospice of Michigan undertook a clinical trial to compare the outcomes of patients receiving standard cancer care with those who received standard care plus palliative services.

Typical Features of Palliative Care in Promoting Excellence Projects

  1. Ongoing communication among patients, families and providers
  2. Advanced care planning and patient-centered decision making that is iterative and reflective of patients’ values and preferences
  3. Formal assessment and treatment of physical and psychosocial symptoms
  4. Care coordination (also known as case management) to streamline access to services and monitor quality of care
  5. Spiritual care
  6. Anticipatory guidance in coping with illness and issues of life completion and life closure
  7. Crisis prevention and early crisis management
  8. Bereavement support
  9. An interdisciplinary team approach to care
  10. 24/7 availability of a clinician knowledgeable about the case

Dartmouth's Norris Cotton Cancer Center and Hospice of Vermont and New Hampshire brought palliative care to the university cancer center, a community-based oncology practice and a rural hospital, while providing patients tools to better manage their illness.

These demonstrations were completed in 2002 and some data are still being analyzed. The findings presented in this monograph must be considered preliminary. As small-scale pilot projects striving to build new models of care, often the sample size was too small to achieve statistical significance. But the programmatic results are intriguing in a hopeful way that demands broader study.

These projects dispel many concerns about the practicality of these models, the feasibility of merging curative and palliative clinical cultures and the general acceptance of concurrent care by patients, families, clinicians and cancer centers. They indicate that when patients undergoing treatment also receive palliative care they experience improved quality of care and the burden on their caregivers declines. In addition, intriguing early results suggest that concurrent care may actually reduce health care costs – or at least not increase them – and may even extend lives.

Clinicians participating in these demonstration projects discovered that cancer treatment and palliative care do go together. They became enthusiastic supporters of the concurrent models because they saw it improve the quality of care for their patients, thereby enhancing their own professional satisfaction as well. The culture of these centers shifted, ushering in a new mindset and expectations for the care of patients with advanced, incurable illness. Many of the partnering institutions involved are continuing the concurrent model of care beyond the life of The Robert Wood Johnson Foundation Promoting Excellence in End-of-Life Care grants. Several are pursuing additional research based on their successful pilot projects.

In integrating two seemingly disparate models of care, the programs addressed issues such as cultural gaps, patient and professional education and reimbursement challenges. Both in their successes and their struggles, these exciting experiments in care delivery provide jumping-off points for expanded efforts to bring comprehensive attention to comfort, quality of life and family caregiver support throughout the continuum of cancer care.

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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying persons and their families. Visit PromotingExcellence.org for more resources.

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