Patient Focus Pat Stanfill Edens, PhD, RN, FACHE and Marsha Fountain, MSN, RN

The number of Palliative Care Programs (PCP) in large and not-for-profit U.S. hospitals has increased 125.8 percent over the last eight years according to a recent study by the Center to Advance Palliative Care (CAPC) and the National Palliative Care Research Center (NPCRC), but for profit hospitals are lagging.¹ Even with these improved numbers, there are still gaps in providing palliative care for cancer patients. PCPs enhance the quality of care for patients experiencing serious, chronic illnesses. Palliative care (PC) for cancer patients can be integrated into the therapy regimen without sacrificing curative intent, while hospice care is clearly focused on the dying patient who no longer benefits from therapy. Dr. Diane Meier, the director of CAPC, says that the PCP “addresses the fragmentation of the healthcare system and puts the focus back on communication with the patient and family.”² Hospitals and physicians working together can develop a PCP or enhance an existing program to better serve the needs of their cancer population.

What is Palliative Care?
PC for the cancer patient focuses on living with a chronic cancer diagnosis, and preparing for the process of dying. While more attention has been given to palliative care over the past few years, referrals to PCPs still occur late in the trajectory of the disease.3 Hospice care is widely available but also suffers from late referrals, even as more institutions implement palliative care programs which should improve timeliness of referrals to hospice. Private physician practices are slow to adopt palliative care initiatives for a variety of reasons, including time and staff constraints and reimbursement. Fadul, et al., found in their study conducted at M. D. Anderson Cancer Center that physicians and other providers were more likely to refer patients to a service called supportive care than to one called palliative care, which was perceived as distressing and less hopeful.³

In order for PC to be successful, it must be timely and interdisciplinary. The goal of palliative care, according to the Center to Advance Palliative Care, is to “relieve suffering and improve quality of life for patients with advanced illness and their families.”4 The World Health Organization (WHO) supports palliative care as the total active care of patients whose disease is not responsive to curative treatments.5 While recent press surrounding health reform inaccurately references “death panels,” 6 the WHO states that PC affirms life and regards dying as a natural process, neither hastens nor postpones death, provides relief from pain and suffering, and offers a support system including support in bereavement. Consideration of palliative care intervention should begin soon after diagnosis and grow in increasing importance throughout the disease (Figure 1).

Who Should Provide Palliative Care?
PCP’s require a variety of care sites, a multidisciplinary team, and appropriate medical intervention that provides optimal quality of care as the disease progresses. It also should begin far in advance of the need for hospice, when the patient is chronically ill and requiring ongoing medical care. The Institute of Medicine’s National Cancer Policy Board and The Center to Advance Palliative Care both emphasize the importance of PC beginning at initial diagnosis with increasing levels of support through the disease until death.4,7 While hospice care removes all therapeutic interventions and focuses on relief of pain and suffering, palliative care continues therapeutic interventions until the intervention is outweighed by the disadvantages.

Involving the medical and radiation oncologists in palliative care provision is critical to success. The National Comprehensive Cancer Network (NCCN) recommends that oncologists integrate PC into their practice for patients who meet screening criteria, and consult and collaborate with a palliative care specialist for more complex cases.

Organizations writing palliative care guidelines provide invaluable guidance to hospitals and physicians committed to the concept of PC. NCCN provides a guideline for Palliative Care from the physician perspective that addresses the need for a plan of care developed by an interdisciplinary team.8 CAPC provides guidelines for hospitals interested in developing a PCP.4 Both the American Society of Clinical Oncology (ASCO) and the American Society of Radiation Oncology (ASTRO) address the need for palliative care. The ASCO position statement on palliative care states “that it is the oncologists’ responsibility to care for their patients in a continuum that extends from the moment of diagnosis throughout the course of the illness. In addition to appropriate anticancer treatment, this includes symptom control and psychosocial support during all phases of care, including those during the last phase of life.”9 ASTRO supports the use of the NCCN guidelines and the National Consensus Project for Quality Palliative Care guidelines.10-11

How to Provide Palliative Care?
Cancer care is inherently fragmented as patients move from physician offices to freestanding radiology and laboratory centers to hospitals to radiation therapy centers and to a myriad of other sites from diagnosis to the end point of their care. The questions of who provides palliative care and where this care is provided must be addressed. The cost of cancer care is high and the minimal reimbursement for PC only compounds the problem. Developing a program requires interdisciplinary cooperation and coordination, while determining financing methodologies.12 Utilizing cost aversion is an excellent strategy for hospitals, while medical and radiation oncologists receive their usual fees for providing the ongoing therapeutic care the patient normally needs in cancer care.13

The first step in providing a PCP is determining interest and knowledge in the facility and among the medical staff. Asking questions of physicians and staff, providing the NCCN guidelines for review as a component of quality assessment projects, or perhaps conducting a review of palliative care offerings during the annual assessment of services and care required by the American College of Surgeons (ACoS) Commission on Cancer as part of the accreditation process are all strategies to determine the extent of available services and the interest in providing more.14 Implementing a palliative care program or developing strategies to improve an existing program may also meet Standard 8.2 of the ACoS requirements stating that the Cancer Committee or other appropriate leadership implements two improvements that directly affect patient care.

To begin a PCP requires a commitment from the hospital provider and physicians to work together, including a commitment of resources and a time commitment of staff involved. Using the CAPC resources is highly recommended as is working with individuals who have established and maintained quality programs. Using a team approach of volunteers is ideal as it establishes early buy-in for the program efforts. Identifying the interdisciplinary team needed to drive the process is critical. A medical staff leader, a nursing leader, a medical social worker, a pain management specialist, a pastoral care member, and an administrator are the minimum needed to begin the process. Others with an interest in PCP development are encouraged, including a family member or Hospice representative, but if the minimum team can not be identified, the program may not succeed.

Developing an initial action plan, including a draft statement of medical leadership support, patient volumes anticipated, financial implications, and administrative and clinical expertise, begins the initial steps of program development. From the initial action plan will flow the business case that must be developed that calculates the financial impacts of the program. Cost avoidance in the hospital setting is more difficult to quantify but there are tools, resources and consultants available that assist facilities in determining the actual costs and dollars saved by implementing a program. Edens, et al., reported that one facility freed up costly ICU beds and averted unnecessary resuscitations to more than pay for the program.12-13 Physician offices must determine if additional time is required to counsel patients about palliative care options or if a greater involvement with the hospital program is the best avenue to provide this service.

While the focus of this discussion is on the cancer patient, one analysis of more than 700 admissions with 6,600 plus patient days in three different facilities revealed that only 14 percent of the deaths in the hospitals had a cancer diagnosis.12 Palliative care serves an older population, many with a cardiopulmonary, neurological or other non-cancer diagnosis so including other specialties in the discussion of program development is recommended.

After a comprehensive assessment of knowledge about palliative care provision and a clinical analysis of admissions are complete, a financial analysis is needed. Reviewing deaths in the facility for cause of death, site of care, cost to deliver care and reimbursements received, and the potential to avert unneeded care provides the financial data for the hospital provider. In the physician office, compliance with nationally recognized palliative care guidelines such as the NCCN guidelines, determining time spent in counseling patients and families about treatment and non-treatment outcomes, the percent of patients in late stage or futile care protocols, the number and timeliness of referrals to hospice care and other factors are important to understand. While medical and radiation oncologists continue the active therapy of their patients and receive reimbursements for that care even in the presence of patients’ participation in a palliative care program, the potential to relieve suffering and support the best possible quality of life for patients and families is crucial. There may be uncompensated care that is provided in the physician office setting that needs to be captured in a financial assessment of the practice.

What Model of Palliative Care?
Once the educational, clinical and financial analyses are complete and support for the program development is evident, determining the model of care to provide is the next step. There are several models that may be adopted, and three options are presented here.4,12 The Consultative Service Model uses either a single individual (Sole Practitioner Model) or a team (Full Team Model) that follows the patient regardless of site of care. This model functions in an advisory role to physicians providing therapeutic care to the patient, including recommending when the patient may verbalize a readiness for hospice care. A Geographic Inpatient Model uses a dedicated bed model and congregates patients in a unit for inpatient admissions. This may be a difficult model to implement when patients have a variety of diagnoses. Designating beds on the medical oncology unit and providing additional education and training for staff is one way to support a geographic model. Patients are generally symptomatic when admitted to the hospital and are continuing to receive active therapy, so geographic locale and billing is usually disease-based and reflects the acute care model.

The leader of the PCP may be a Board Certified Palliative Care Physician, an Advanced Practice Nurse, or other clinical leaders with additional training in palliative care. The leader should be identified early in the process of developing a program and incorporated into the planning as soon as possible. Staff should also receive additional education about providing palliative care through both formal and informal means.

The hospital and physician practice environments for the patient and family participating in a PCP should be modified regardless of the model chosen. Patient and family involvement in decision making regarding treatments and care planning, using private rooms, minimizing restrictions on visiting even in the ICU, and providing a more patient centric care experience are vital to a healthy PC effort.

Palliative care may be outsourced, and many community hospice agencies are beginning to provide this service to patients, facilities and physician practices.12 Outsourcing may be provided through staff, leased services and beds, or contract management. Home care agencies are also involved in palliative care provision in some markets. If services are provided outside the domain of the hospital and physician office, the patient must clearly understand that there may be an additional bill for the services provided through another agency.

So Should We Offer Palliative Care?
Providing access to palliative care is the right thing to do for patients, and is an integral part of quality patient care. Even before reimbursement is determined, consumers and payors becoming more knowledgeable of the benefits provided by the program may demand access. While no one argues that palliative care provides a measurable benefit to quality of life, developing a program without an easily identifiable revenue stream is challenging. Understanding clearly the benefits of a PCP, developing a cost aversion financial model to support the cost of the program, and gaining the support of physicians, administrators, interested staff and patients will assist your facility or practice in determining how to provide palliative care. Providing a smooth transition from diagnosis to either cure or a good death is one of the best gifts a patient and family can receive from their providers. It is the right thing to do.

Pat Stanfill Edens, PhD, RN, FAAMA, FACHE, is Senior Consultant, The Oncology Group, LLC. Prior to joining TOG, she was Assistant Vice President, Hospital Corporation of American (HCA), with corporate responsibility for strategic and operational direction, and financial performance of the $3.5 billion Oncology, Solid Organ and Bone Marrow Transplant Service Lines and was the Responsible Business Executive for Clinical Research for the company. She presents internationally on topics related to cancer, biotechnology, healthcare economics, clinical research and quality, with over 100 publications in a variety of content areas.

Marsha Fountain, MSN, RN, is a Founder of The Oncology Group, a national oncology consulting firm. Marsha began consulting to cancer programs in 1996 following a 20-year career as a cancer program Administrator. As a consultant to hospitals, she has been influential in the development and planning of cancer programs throughout the United States. She assists hospitals in providing and improving the continuum of cancer care services patients require through the development of strategic plans and business plans that are specific to the hospital, physician and community. Marsha is a frequent speaker at national symposia and author of numerous articles.

  1. Analysis of U.S. Hospital Palliative Care Programs 2010 Snapshot. Center to Advance Palliative Care. Available at: news-and-events/releases/04-05-10. Accessed on April 7, 2010.
  2. Palliative Care Programs Continue Rapid Growth in U.S. Hospitals Becoming Standard Practice throughout the Country. Press Release on April 7, 2010 from Center to Advance Palliative Care. Available at: Accessed on April 7, 2010.
  3. Fadul N, Elsayem A, Palmer JL, Del Fabbro E, Swint k, Li Z, Poulter V, Bruera E. Supportive versus palliative care: what’s in a name? a survey of medical oncologists and midlevel providers at a comprehensive cancer center. Cancer, 2009 May 1;115(9):2013-21.
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  6. False ‘Death Panel” Rumor Has Some Familiar Roots. The New York Times. Available at: policy/14panel.html. Accessed on April 4, 2010.
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  10. Consensus Based Clinical Practice Tools. American Society of Therapeutic Radiation Oncology. Consensus-based/. Accessed on April 7, 2010.
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  12. Edens PS, Harvey CD, Gilden KM. Developing and Financing a Palliative Care Program. American Journal of Hospice and Palliative Medicine. 2008 Oct/Nov 25(5):379-384.
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