Providing Palliative Care for the Newly Diagnosed Cancer Patient: Concepts and Resources

ABSTRACT: Palliative care has evolved from end-of-life care following exhaustion of curative therapy to care across the cancer-management continuum. Often initiated concurrently with curative care at the time of diagnosis, palliative care ensures both effective symptom management and the best possible quality of life in four key domains-physical, psychological, social, and spiritual. The significant growth and development of palliative care in the United States is evident in that one in four hospitals now has a palliative care program, palliative medicine is now recognized as an official medical subspecialty by the American Board of Medical Specialties, and national programs offer comprehensive continuing education in palliative care for nurses and physicians. The oncology nurse who provides palliative care does so as part of a multidisciplinary team that includes not only physicians but also can involve chaplains, massage therapists, pharmacists, nutritionists, and other specialists. This article provides resources and reviews and highlights pertinent palliative care issues to guide oncology nurses managing newly diagnosed cancer patients.

The three words “You’ve got cancer” can change someone’s life. After being diagnosed with cancer, questions arise: Can it be cured? Why me? Am I going to die? Luckily, as advances have been made in the treatment of cancer, the diagnosis of cancer is not necessarily a terminal one. In fact, many cancers, such as breast or colon cancer, when detected early enough, are curable, and treatment advances have resulted in long-term survivorship across many cancers.

There are now more than 11 million cancer survivors in the United States. Regardless of the type of cancer or prognosis, there is a role for palliative care beginning at time of diagnosis.

Palliative care, also known as supportive care, is sometimes assumed to be care delivered solely for patients who are dying. The concepts of palliative care did arise from the hospice movement, but have expanded beyond the notion of care provided at end of life. Palliative care is defined by the World Health Organization as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.”[1]

The National Comprehensive Cancer Network (NCCN) defines palliative care in its clinical practice guideline for palliative care as “both a philosophy of care and an organized, highly structured system for delivering care to persons with life-threatening or debilitating illness. Palliative care is patient and family-centered care that focuses upon effective management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care according to patient/family needs, values, beliefs, and culture(s). The goal is to prevent and relieve suffering and to support the best possible quality of life regardless of the stage of the disease or the need for other therapies. Palliative care can be delivered concurrently with life-prolonging care or as the main focus of care.”[2]

Historically, the transition to palliative care occurred after all curative therapies had been exhausted. Professionals in the field of palliative care have worked to shift this notion from palliative care beginning after curative care ends to palliative care delivered concurrently with curative care-in other words, palliative care initiated at time of diagnosis.

Much of the care that nurses provide, aside from administering oncologic therapies focused on cure, falls under the domain of palliative care. Treating nausea from chemotherapy or pain from mucositis, and educating patients on ways to minimize fatigue secondary to radiation or chemotherapy are all interventions to improve patients’ quality of life.

The purpose of this article is to review current resources that exist for nurses in the treatment of symptoms, as well as to highlight other issues that arise for the newly diagnosed patient that need to be addressed in order to reduce suffering and to treat the whole person.

ResourcesEvidence-Based Interventions: ONS PEP Cards

Symptoms that are caused by cancer often diminish and resolve once treatment is started. However, most therapies come with side effects. Many resources and evidence-based guidelines have been created to help nurses in treating these distressing side effects. The Oncology Nursing Society (ONS) has published such a resource, entitled Putting Evidence into Practice (PEP) Resource Cards. The process of creating this resource is described by Gobel, Beck, and O’Leary.[3] Distributed by ONS, the topics addressed to date are listed in Table 1.

These resource cards review the existing literature and organize the information/interventions into five sections: recommended for practice, likely to be effective, benefits balanced with harms, effectiveness not established, and expert opinion.

In addition to the portable cards, the ONS web site http://www.ons.org/outcomes/measures includes more detailed PEP cards that provide additional information regarding the research reviewed, evidence-based

summaries on each of the symptoms reviewed, and tables of evidence that include details on sample and setting characteristics, study design and conceptual model, measures, results and conclusions, limitations, and the ONS level of evidence and comments. The above topics are of special significance to the newly diagnosed patient undergoing treatment.

NCCN Clinical Practice Guidelines

The NCCN has published multiple clinical practice guidelines, available on their web site (www.nccn.org). Some of the guidelines include adult cancer pain, antiemesis, cancer- and treatment-related anemia, cancer-related fatigue, and distress management. In addition, NCCN has published a palliative care guideline that provides clinicians with a pathway to approach cancer patients, whether newly diagnosed, diagnosed with a recurrence, or terminal.[1] This guideline aims to maximize quality of life in cancer patients.

The palliative care guideline helps to direct clinicians in their assessment of cancer patients for palliative care issues. It contains recommendations for screening and assessment; lists palliative care interventions based on the patient’s disease trajectory and outcomes to evaluate in reassessment; and recommends interventions for after death occurs, both for the family and for the health-care staff. This guideline highlights the role of palliative care at all points along the illness trajectory and serves as a good resource for clinicians treating cancer patients.

Seminal Texts and Journals on Palliative Nursing

The Textbook of Palliative Nursing is a comprehensive nursing textbook that contains educational information and resources on symptoms and issues related to palliative care.[4] As the standard text for nurses specializing in hospice and palliative care, it is also a valuable resource for oncology nurses in all clinical areas, as much of its content is applicable to the cancer population.

Included in this textbook are chapters covering symptom assessment and management, psychosocial support, spiritual care, and end-of-life care. Chapters on symptoms review the assessment tools that are available and discuss interventions for each particular symptom, whether pharmacological or nonpharmacological.

Another useful text for nurses caring for newly diagnosed cancer patients is Principles and Practice of Palliative Care and Supportive Oncology.[5] The editors intended this textbook to be a resource for oncology clinicians providing care for cancer patients at any point in the disease trajectory, recognizing that even newly diagnosed patients may experience physical symptoms or psychosocial or spiritual concerns to be addressed during treatment.

This textbook contains more than 40 chapters covering many different symptoms and syndromes that a cancer patient may experience. Each symptom chapter includes sections reviewing mechanisms and pathophysiology of the symptom, assessment and diagnostics, and treatment options and interventions.

In addition to the textbooks mentioned, there are a few journals that can serve as good references in providing palliative care to oncology patients. The Clinical Journal of Oncology and Oncology Nursing Forum often contain articles that review symptom assessment and treatment, along with other palliative care issues such as psychosocial support, spiritual distress, coping, and survivor issues.

Another journal that highlights palliative care issues is the Journal of Supportive Oncology, which is provided at no cost to oncology professionals and offers review articles and research articles relevant to the supportive and palliative care of oncology patients, addressing practical management of clinical problems.

ONCOLOGY Nurse Edition is publishing an important series on palliative care, which started in February 2008 and continues with this installment and in subsequent issues throughout 2008 and 2009.

Educational Programs

Researchers at City of Hope, along with the American Association of Colleges of Nursing, have created the End-of-Life Nursing Education Consortium (ELNEC) as a way to improve end-of-life care through education of nurses (http://www.aacn.nche.edu/elnec), though much of the curriculum is relevant to the care of newly diagnosed patients. ELNEC–Core was originally funded by the Robert Wood Johnson Foundation and it targeted nursing educators in baccalaureate and associate degree faculty as well as nursing continuing education providers and clinical staff development educators.

As ELNEC grew, the developers obtained a grant from the National Cancer Institute to create an ELNEC–Oncology curriculum. The developers continue to offer “train the trainer” courses in the ELNEC–Oncology curriculum, and previously trained oncology nurses also are offering learning opportunities based on the curriculum.

The ELNEC curriculum comprises nine modules, including pain management; symptom management; communication; loss, grief, and bereavement; cultural considerations; ethics; and final hours. With the exception of the module devoted to final hours, all of the other modules are relevant to patients newly diagnosed or undergoing initial cancer treatment.

EPEC-O, created by the Education of Palliative and End-of-Life Care (EPEC) project out of Northwestern University’s Feinberg School of Medicine, is offered as a CD-ROM curriculum or as an online course. The target audience is clinicians who care for cancer patients, such as nurse practitioners, physicians, and physician assistants. This curriculum strives to give clinicians the tools to provide palliative care to the patient population and to be able to teach palliative care principles to trainees within the work setting. EPEC-O not only covers topics similar to those of the ELNEC curriculum, but it also includes special modules on topics such as: physician-assisted suicide, survivorship, advance care planning, clarifying diagnosis and prognosis, negotiating goals of care, withdrawing nutrition and hydration, and conflict resolution.

Internet Resources

There are many web sites that contain useful information on palliative care issues for cancer patients. ONS has a link within its web site on supportive and palliative care (http://www.ons.org/clinical/supportive/) that contains bibliographies and resources for home care, palliative care and hospice, quality of life, and survivorship issues. Another useful web site is that of the City of Hope Pain and Palliative Care Resource Center (http://www.cityofhope.org/prc/). It includes the following information categories: quality of life, palliative care/end-of-life/bereavement, pain and symptom management, special populations, education, quality improvement, ethical and legal issues, research instruments/resources, and other resources.

Addressing Other Palliative Care Issues Psychosocial Concerns

Nurses have an important role in assessing and managing physical and psychological symptoms. However, in our goal of treating the whole patient, it is important to highlight additional skills and responsibilities that a nurse should have in order to provide palliative care at time of diagnosis. Beyond the physical impact of cancer and its treatment, other aspects of a person’s life contribute significantly to quality of life. Ferrell conceptualized quality of life to contain four domains: physical, psychological, social, and spiritual well-being.[6] In caring for the whole patient, nurses must address all domains.

As part of patient assessment, nurses must screen for psychological symptoms. Patients may become depressed as a result of their cancer diagnosis, and referral to resources within the institution or in the community would be appropriate. Patients may also experience symptoms such as anxiety secondary to physical symptoms (eg, pain and/or dyspnea) that may benefit from pharmacological or nonpharmacological intervention.

Some of the previously mentioned resources, such as the PEP Resource Cards, the NCCN palliative care guideline, the Textbook of Palliative Nursing, and Principles and Practice of Palliative Care and Supportive Oncology contain information about addressing psychological symptoms. They also discuss social and spiritual quality of life domains.

Communication

Care of cancer patients starts with the initial diagnosis, whether nurses participate in the initial discussion of a cancer diagnosis or through follow-up with the patient after diagnosis. How nurses communicate information, both verbally and nonverbally, can impact how our patients respond. Although the nurse may not be responsible for breaking the bad news, often the nurse can help to set the stage or facilitate the conversation so that the “bad news” is shared in a way that is empathetic and compassionate. Nurses help to advocate for their patients, ensuring that their questions are answered and their concerns are addressed.

The Oxford Textbook of Palliative Medicine includes a chapter by Buckman on “Communication in palliative care” with a six-step protocol for breaking bad news.[7] While the physician may be the initiator of the conversation, the nurse can help get the setting right and facilitate the conversation.

Another resource for breaking bad news is the six-step SPIKES protocol.[8] In the Textbook of Palliative Nursing, Dahlin and Giansiracusa author the chapter titled “Communication in Palliative Care,” in which they review elements of communication, highlight the nursing role, and discuss the topics of delivering bad news, advance care planning, and communications about the use of life-sustaining therapies.[9] In their chapter, the authors utilize case studies to illustrate the different aspects of communication.

Advance Care Planning

Another key issue to discuss around time of diagnosis is advance care planning. This concept is not just about asking, “Are you a full code?” at admission of the patient to the hospital. It is more of an ongoing process of engaging the patient in a discussion about his hopes and goals in light of his diagnosis and prognosis.

People at different points in their illness trajectories or lives may have different hopes and goals. There are practical interventions that should be part of the standard care provided. Nurses should ask patients whether they have completed an advance directive or want more information about doing so. In the advance directive, patients identify a durable power of attorney for health care who would be able to make health care decisions for them should they become incapacitated.

The advance directive is the tangible result of conversations the patient has had with clinicians, family, and friends that help document his or her wishes regarding health-care treatments. While this may be a difficult issue to raise at initial diagnosis, it is important for patients to think about and identify someone for this role, and then to discuss their values and goals with this agent, in case at some point during treatment the patient becomes unable to make medical decisions.

With advance care planning, it is hoped that the health-care team can honor a patient’s autonomy. As treatment progresses, nurses should continue these conversations with patients, especially if goals of care shift from a curative to a palliative focus, because treatments and interventions should be directed by a patient’s goals. Bomba and Vermilyea discuss the benefits of advance care planning at the time of diagnosis and barriers to having these discussions, as well as some of the issues surrounding advance care planning.[10] Benefits include helping patients to maintain control and achieve peace of mind, ensuring that patients’ wishes are respected, and positively impacting patients’ satisfaction with their providers. Barriers include provider discomfort with discussing death or its possibility or system issues such as a lack of support for providers in providing advance care planning.

Conclusion

Providing palliative care for the newly diagnosed cancer patient starts with the nurse. Through detailed assessment, nurses can identify problems that affect a patient’s quality of life. Physical problems are sometimes the easiest to identify, but it is as important to assess patients for other symptoms and problems that can impact their quality of life. Providing palliative care means paying attention to all of a person’s domains of quality of life: physical, psychosocial, and spiritual.

The process of providing palliative care includes developing communication skills to facilitate conversations with patients. Communicating bad news, supporting a patient who has just received bad news, or facilitating advance care planning are important skills to develop. By establishing good communication with patients, nurses can provide care that continues to be in accordance with their patients’ goals and hopes for treatment, solidifying the partnership that nurses have with their patients.

This article is reviewed here:

The Gabriel Article Reviewed

Disclosures:

Financial Disclosure: The author has no significant financial interest or other relationship with the manufacturers of any products or providers of any service mentioned in this article.

References:

References

1. World Health Organization World Health Organization: WHO definition of palliative care [electronic version]. Available at:

http://www.who.int/cancer/palliative/definition/en/

. Accessed January 29, 2008.

2. National Comprehensive Cancer Network: NCCN Clinical Practice Guidelines in Oncology: Palliative Care [electronic version]. Available at:

http://www.nccn.org/professionals/physician_gls/PDF/palliative.pdf

. Accessed January 12, 2008.

3. Gobel BH, Beck SL, O’Leary C: Nursing-sensitive patient outcomes: The development of the Putting Evidence into Practice resources for nursing practice. Clin J Oncol Nurs 10(5):621–624, 2006.

4. Ferrell BF, Coyle N (eds): Textbook of Palliative Nursing. New York, NY, Oxford University Press, 2006.

5. Berger AM, Shuster JL, VonRoenn JH (eds): Principles and Practice of Palliative Care and Supportive Oncology, 3rd ed. Philadelphia, PA, Lippincott, Williams & Wilkins, 2006.

6. Ferrell BR: The impact of pain on QOL: A decade of research. Nurs Clin North Am 30(4):609–624, 1995.

7. Buckman R: Communication in palliative care: A practical guide. In Doyle D, Hanks GCW, MacDonald N (eds): Oxford Textbook of Palliative Medicine, pp141–156. New York, NY, Oxford University Press, 1998.

8. Baile WF, Buckman R, Lenzi R, et al: SPIKES-A six-step protocol for delivering bad news: Application to the patient with cancer. Oncologist 5(4):302–311, 2000.

9. Dahlin CM, Giansiracusa DF: Communication in palliative care. In Ferrell BF, Coyle N (eds): Textbook of Palliative Nursing, pp 67–93. New York, NY, Oxford University Press, 2006.

10. Bomba PA, Vermilyea D: Integrating POLST into palliative care guidelines: A paradigm shift in advance care planning in oncology. J Natl Compr Cancer Net 4(8):819–829, 2006.