Living to the End: Merging Holistic and Evidence-Based Strategies to Meet the Needs of People Living With Advanced Cancer

Robyn was 63 years old when she was diagnosed with Stage III ovarian cancer. After recovering from a total abdominal hysterectomy and oopherectomy, she traveled to a comprehensive cancer center to consult with a physician specializing in ovarian cancer. She took her entire collection of pathology slides and reports, laboratory and imaging study reports, and the summary of her surgical procedure.

She made it clear that she did not want to travel for treatment, but instead wanted to go home with a treatment plan that could be followed by her local medical oncologist. Her treatment team worked together to meet Robyn’s needs and to follow her wishes.

After completing adjuvant therapy, Robyn resumed her busy lifestyle. She and her husband provided a loving home for two granddaughters. She served as a docent at a local museum; made scuba diving trips around the world; and continued to build her expertise in underwater photography, hosting a one-woman show at a local art gallery. She celebrated her 70th birthday in Bangkok with her husband and diving buddies.

Robyn was under no delusions that her cancer had been cured, but instead dealt with it as a chronic illness to be monitored and managed. She consulted with her gynecologic oncologist annually, and adhered to the follow-up plans recommended by her treatment team. In fact, she experienced several recurrences- asymptomatic, but heralded by increasing CA-125

levels. With each recurrence, she would undergo another chemotherapy regimen, and then, as soon as possible, take another planned dive trip. Over the course of her illness and therapy with the usual array of chemotherapy agents used for ovarian cancer, she developed painful, progressive, and permanent peripheral neuropathy that especially affected her legs and feet. Walking was painful and difficult. She discovered that swimming brought complete relief of her neuropathic pain, so she swam regularly at a local fitness center, and of course, continued her dive trips. Robyn was not the least bit shy about asking fellow-travelers for help with her luggage. She often told her friends, “I can’t die yet…I still have frequent flier miles!”

Introduction: The Necessity of Breaking the Silence

As every oncology nurse learns at the outset of his or her career, the three major goals of cancer treatment are cure, control of disease when cure is not possible, and palliation of distressing symptoms. The vast majority of oncology nursing literature focuses on dealing with side effects and symptoms that occur as a result of cytotoxic therapies and on symptom management for patients who are at the end of life. Although Robyn’s story is one of hundreds of thousands of stories that reflect the courage and tenacity of people living with advanced cancer, there is scant literature documenting the needs of and guiding creation of services for this population.

The Institute of Medicine report, From Cancer Patient to Cancer Survivor: Lost in Transition,[1] a pivotal document that provides a foundation for much of the current focus on cancer survivorship, specifically excludes from its attention survivors living with persistent and/or recurrent cancer.

Most available literature relating to persons with advanced cancer focuses on issues among people who are dying. There is confusion about the term “palliative care,” with most palliative care literature relating to end-of-life interventions. Most survivorship literature has focused on individuals who have completed treatment and have no evidence of disease. Journal articles and information available from resources such as patient teaching information, trade books, and the Internet primarily relate to treatment choices and, once again, to the management of acute symptoms and side effects arising from treatment.

It is revealing that in the breast cancer population, arguably the most studied of all cancer patient and survivor populations, the needs of women living with advanced disease, such as Robyn, are rarely addressed in the clinical and research literature.[2] Advanced breast cancer advocate and breast cancer survivor Musa Mayer notes that “this patient group remains dramatically understudied,”adding that “you can not serve or advocate for the needs of a patient group whose dimensions have never been measured.” (Personal communication, October 11, 2008.) Survivors living with advanced breast cancer are, says Mayer, a “forgotten population.”[3]

Who, How Many, and How?

Newsweek columnist Sharon Begley describes journalists’ blueprint for writing about cancer: uplifting accounts of people whose cancer was detected early and eradicated by one of the new “rock star” therapies, and who remain alive and cancer-free decades later.[4] These upbeat stories of survival overlook the experience of people living with advanced and metastatic disease, often leaving these survivors feeling ignored and viewed as cancer’s “dirty little secret.”[2] In reality, metastatic disease has been and remains the most common cause of morbidity and mortality for people with cancer.

Based on American Cancer Society data[5] and Surveillance, Epidemiology, and End Results (SEER) stage categories,[6] an estimated 19% of the 1.5 million people diagnosed with cancer each year-more than 1 million-have distant or advanced disease at the time of diagnosis. We know that more than 500,000 Americans die each year with cancer indicated as the cause of death,[5] and we can conclude that these people lived for a time with advanced disease. Nevertheless, we cannot say how people live with advanced cancer.

In the preface to her book, Ready to Live: Prepared to Die,[7] Amy Harwell tells of her response to the question she is often asked: “What’s your secret to being at peace with your diagnosis of advanced cancer?” Her “secret” is simple: “I had worked through my dying to go on with my living. I believe that once we have prepared to die, we are really freed to live in whatever time we have left.” Harwell uses the metaphor of taking a journey, providing details of the tasks associated with preparing to die, such as working through the many choices confronting people living with advanced disease-preparing advance directive documents and instructions, exploring questions related to so-called heroic efforts and suicide, and a host of other fears. Nessa Coyle’s work exploring needs among people receiving palliative care, revealed the dimensions of what she calls the “hard work of living in the face of death,”[8] and reflects Harwell’s experience in many ways.

Needs of People With Advanced Cancer: What Is Known?

Despite the paucity of strong levels of evidence, there are data from which we can take direction. We can begin by acknowledging that the population of individuals living with advanced cancer has unique and often unmet needs. We can advocate for a research agenda to document and address these needs more effectively, and ultimately, craft evidence-based assessments, interventions, programs, and services. Until such evidence accumulates, we can use the limited research findings available, consensus reports and recommendations, and our tacit knowledge, and listen and respond to the needs expressed by people living with advanced cancer.

The data
Additional research exploring the physiologic, psychosocial, and spiritual needs of this population is needed for the growing population of people living with advanced cancer. There is much to be learned from the population of women, estimated to be at least 150,000, who are living in the US with metastatic breast cancer.[2] The Institute of Medicine Report, Meeting Psychosocial Needs of Women With Breast Cancer,[9] acknowledged that addressing symptomatic and pain relief needs of women with advanced breast cancer (ABC) is central to their emotional and physical well-being.

Syrjala and Chapko outlined a biopsychosocial model illustrating the interplay of somatic and psychosocial issues, positing that unrelieved pain diminishes social role functioning abilities.[10] Numerous studies highlight spiritual and existential concerns as a hallmark of this phase of illness, and suggest that at this stage of illness, women should focus on legacies to their families and engage in planning for their children’s lives.[8,11–13]

The notion of creating a legacy, perceived as a form of continued existence, is noted in qualitative findings reported by Coyle using a sample composed of males and females with diagnoses of endometrial, lung, prostate, and rectal cancers, as well as lymphoma and sarcoma.[8] A grounded theory of “living on the outside looking in,” proposed by Davies and Sque[14] as a theory of living with advanced breast cancer, was generated through the core variable “reconciling a different me” -in which women experienced an inability to re-join the world because of their changed identity- and four co-existing and integrated categories:

• Time bomb: Watching and waiting for recurrent disease.
• Media effect: Negative and positive impact of information provided by the media and how women wish to have a choice regarding information received.
• Professional waning: Experience of diminishing and failing relationships between survivors and the professionals who provided care in the acute stages of disease.
• Rescuers: Search for people who or situations that could release women from isolation and exclusion following diagnosis-a search for kinship with others in similar situations and identification with role models.

Mayer and Grober[2] performed an online needs assessment survey in 2005, enlisting 618 women with advanced breast cancer as respondents.The survey focused on use of and preferences for services in three domains: information, support, and practical resources. Respondents experienced expected symptoms and side effects, including fatigue (92%), insomnia (84%), pain (79%), hot flashes (79%), cognitive problems (78%), alopecia (77%), sexual problems (73%), depression (66%), anxiety (59%), neuropathy (65%), anorexia (60%), and nausea (55%). Despite the prevalence and burden of symptoms, most respondents reported carrying on with daily routines and employed effective coping and adaptive abilities.

Survey data indicate that these respondents highly value information about their diagnoses and are quite knowledgeable. They seek information about their diagnoses often-on a daily or weekly basis-and deem information to be supportive. They often lack knowledge about available educational programs in their communities or on the Internet. Although a majority of survey respondents attend lectures by experts, they infrequently attend scientific conferences and meetings directed toward patients.

Most find it helpful to read about or hear the experiences of others with advanced cancer and are eager to learn about these experiences. They seek support when they feel alone, are anxious and sad, and need help coping with the medical aspects of cancer. They use and value treatment-related practical resources such as help with insurance and referrals to physicians and treatment centers, prefer educational programs focusing on these topics, and are often unaware of the availability of these resources.

A group of 16 patient advocates from seven countries, The Metastatic Breast Cancer Advocacy Working Group, met in 2008 to discuss ways to address the unmet needs of women living with metastatic breast cancer. As an outcome of this meeting, a consensus report was developed with input from more than 30 women with metastatic breast cancer and the support of Musa Mayer and Advanced BC.org.[15] Three areas for immediate action were suggested:

• Improve access to tailored information, resources, and support services for women with MBC;
• Focus attention on the MBC community to create a unified voice and platform that speaks to its unique needs; and
• Increase understanding of and access to clinical trials.

Despite the prevalence of published literature focusing on breast cancer care, women living with metastatic breast cancer continue to feel overlooked, and their needs are largely unmet. Research findings regarding the needs of survivors with advanced breast cancer may have some application to the care of other advanced cancer populations.

Based on results from their study of symptomatic American male military veterans with advanced cancer, Hwang et al.[16] proposed an unmet need and quality of life outcome model for this patient group. The most frequently reported unmet needs were in physical (80%), activities of daily living (53%), nutritional (46%), and emotional (33%) domains. Higher psychological symptom distress was associated with more unmet needs in emotional, social, economic, and medical domains. These findings are disappointingly similar to the classic work on unmet needs undertaken by Houts and colleagues[17,18] more than two decades ago.

Informational needs
As their numbers grow, meeting the informational needs of people with advanced cancer is perhaps more important than ever before, and is an essential part of cancer care. Data from the American Cancer Society’s studies of cancer survivors indicate that worsening physical and mental functioning is associated with greater informational needs, more negative perceptions of information quality, and more barriers to getting information, and that younger women and survivors in minority and low-income groups reported more problems accessing needed information.[19] Provision of information can reduce anxiety and distress and can support patients’ decision-making, patient satisfaction, and outcomes.[20]

Wong and colleagues[21] identified informational gaps in advanced cancer patient and caregiver populations. Findings indicate people living with advanced cancer were most interested in pain control (75%), management of weakness and fatigue (58%), management of dyspnea (52%), and questions and concerns regarding home care services (46%). Home care services held the third highest rank. Cancer prevention strategies and questions about the incurable nature of some cancers were among the top five interest areas. These researchers noted that the need for information is very real but the provision of appropriate and desired information is sparse, especially given the magnitude of the problems encountered by patients and caregivers at this stage of the cancer trajectory.

The findings of Wong et al.[21] indicate that despite the explosion in information technology, patients and caregivers prefer a ‘one-on-one’ approach to information sharing with healthcare providers. Survey data collected by Mayer and Grober[2] suggest value in informational programs focusing on current and new treatments, and self-care strategies to minimize and manage side effects and cancer symptoms.

Data compiled from the 2005 Health Information National Trends Survey (HINTS) led the study group to recommend consideration of ways to provide “deep support” for survivors’ information needs extending beyond diagnosis and treatment.[22] Hesse and colleagues advocate moving from the traditional transactional model, in which patients present with symptoms and are treated and dismissed, to information services that meet the demands of 21st century health care.[22] In a modern information-delivery system, they note, the service is patient-centered, predictive of coming needs, preemptive of early disease processes, and offers tailored plans for treatment and self-management.

Communication needs
Communication and information are interwoven: Effective communication ensures that information can be used to optimize outcomes for patients.[23] Communication centered on patient needs fosters healing relationships between patients, family caregivers, and healthcare professionals; includes patients in the information loop from recommendation to treatment; identifies and addresses emotional concerns; supports decision-making and the management of uncertainty; and fosters patient self-management.[23,24] Despite the recognized value of communication and information-sharing, the quality of communication in clinical practice is considered quite poor.[20]

In a study exploring information sharing between healthcare providers and patients,[24] communication about prognosis was found to be marginal despite its importance in defining a transition from active treatment to palliative care and advanced care planning. Reb[25] found that improved provider communication, symptom management, and peer support influenced women’s abilities to cope with the challenges of advanced ovarian cancer. A systematic review of reported trials employing “question prompt lists” (QPL) indicates that patients found this sort of tool to be useful in aiding communication with physicians, and it empowered patients to pose questions to their physicians about prognosis.[26]

Psychosocial distress
Psychosocial factors are known to affect disease onset, progression, physical functioning, quality of life, ability to get needed care and adhere to treatment plans, and management of illness and recovery.[27] The diagnosis of advanced cancer is predictably associated with distress.[28,29] Measures to alleviate the detrimental effects of distress can be initiated at every opportunity, but they require identification of psychosocial health needs. Oncology physicians and nurses often do not recognize their patients’ psychosocial problems, and they frequently fail to detect depression and underestimate its seriousness.[30]

Estimates indicate up to 43% of cancer survivors have subclinical or clinical depression and nearly one in four experiences major depressive disorder.[31] Consequences of depression include increased symptom distress and decreased ability to manage symptoms, reach out for social support, and adhere to treatment. Depression also is linked to decreased immune function and diminished long-term survival,[31] and is common among terminally ill patients who consider suicide and those who request physician-assisted death.[32] People with cancer have nearly twice the suicide rate of the general population,[33] with highest risks occurring in older adults.[34]

Economic factors play significant roles in the levels of distress experienced by patients and families. USA Today reported in late 2008 that one in eight Americans with advanced cancers decline recommended care because of cost.[35] Among people with annual incomes under $40,000, one of four with advanced cancers refuses treatment.[36] Work by Hughes et al.[37] provides a compelling and poignant picture of the experiences of the urban poor living with advanced cancer and vividly details their experiences in dealing with their illness, with issues of basic human needs such as toileting and hygiene, and with everyday struggles to survive.

Routine use of screening instruments enhances our abilities to identify cancer patients with psychosocial health needs,[38] and several available screening tools have been found to be valid, reliable, and effective in supporting this patient group.[39,40] Assessments at each clinic visit using a standardized instrument such as the Distress Thermometer[40] are useful as a prelude to planning and providing psychosocial health services, as they enable open discussion of quality-of-life issues between patients and nurses, increase nurses’ awareness of potential distress-related issues, and facilitate appropriate referrals to multidisciplinary healthcare team members and to other resources.[39,40]

Physical symptoms
People living with advanced cancers often do so with a multitude of physical symptoms that are predictable by the natural histories of their diagnoses and known late effects of therapies. Weight loss is one of the most common symptoms experienced by people with advanced cancer, and is a cause of significant concern to survivors and caregivers.[41,42] Bone metastases and skeletal complications including pain, pathological fractures, spinal cord compression, and hypercalcemia are common to many forms of cancer, but often go unrecognized.[43,44]

Eating and speech difficulties, shoulder dysfunction, and pain resulting from treatment-related damage are common among head and neck cancer survivors.[45,46]

The risk of secondary chronic lymphedema as a treatment-related complication increases after radiation, surgery, other invasive procedures, and postoperative infection.[47,48] Breast cancer survivors are at particularly high risk of lymphedema, with the incidence ranging from 7% to 47%, and lymphedema can have a significant impact on interpersonal relationships, functional abilities, occupation, self-image, and self-esteem.[47–49] The incidence of constipation among people with cancer ranges from 70% to 100%. Constipation can occur as a side effect of tumor growth or cancer treatment and opioid analgesics, and from other changes in gastrointestinal function.[50] Fatigue is increasingly recognized as a chronic symptom that can start during treatment, continues to affect many people long after treatment concludes, and has been identified as the one symptom having the greatest impact on everyday life of survivors.[51]

Symptomatic patients with advanced cancer who were being cared for in US Veterans Administration healthcare facilities reported a median number of 13 symptoms each.[16] These findings are supported by other reports suggesting the existence of symptom clusters,[52,53] three or more symptoms that relate to each other among people with advanced cancer.[54,55] Esper and Heidrich[55] describe four sets of symptom clusters among those identified by advanced cancer patients as the most distressing, and associated symptomatology and management:

• Pain, constipation, and confusion;
• Anxiety, agitation, and delirium;
• Nausea, anorexia, and dehydration; and
• Cough, breathlessness, and fatigue.

They suggest a process of assessing and managing symptom clusters by following the mnemonic, “RESCUE” – R: Review situation; E: Explore findings; S: Strategize a plan of action; C: Carry out plan; U: Umbrella resources; E: Evaluate /modify as needed.

In addition to the symptoms described by Esper and Heidrich, many other physiologic symptoms are commonly experienced by people with advanced cancer. The one common element of these and other physiologic symptoms among people living with advanced cancers is that they often may be anticipated, detected, and managed proactively, thereby avoiding some degree of suffering experienced by patients and caregivers. For this positive outcome to occur in the face of important challenges to quality of life, nurses and other members of the healthcare team must be aware of the potential for late and long-term effects of cancer and its treatment.

With this knowledge, nurses can assist survivors with advanced cancer and their caregivers in assuming effective self-care and self-advocacy strategies. One such strategy is the preparation and application of survivorship care plans, tailored to the unique informational, psychosocial, physical, and spiritual needs of patients/survivors and caregivers.[56,57] Table 1 provides a brief synopsis of nursing activities and interventions, merging holistic and evidence-based approaches suggested by available data and guided by standardized terminology, nurse activities, and measures for nursing-sensitive patient outcomes used by the Iowa Interventions and Outcomes Projects.[58,59] (Editor’s note: Table 1 is available online. Please visit www.cancernetwork.com and link to this article in the July 2009 issue of ONCOLOGY Nurse Edition.)

Summary

Planning health-promoting interventions for people living with advanced cancer
“Failing to plan is planning to fail”-a phrase first used by business guru Alan Lakein-is being applied to considerations of systematic approaches to meeting the needs of cancer survivors.[60] Research findings to date recommend that services for cancer survivors incorporate timely and coordinated care and seamless transitions from one phase of the cancer trajectory to the next.[61] Services should focus on safety, effectiveness, and equity of services and interventions.[3,7,9,21,27,61]

These services should occur in a patient-centered environment.[61] They need to incorporate provision of information,[2] early involvement and integration of palliative care interventions,[7,8] symptom management,[10] appropriate selection and use of complementary modalities,[15] and legacy development.[8] Processes to assist patients and caregivers in building and using essential survivorship skills-communicating, information-seeking, decision-making, negotiation, problem-solving, and self-advocacy-offer a preliminary blueprint for promotion of effective self-care strategies.[62–64]

The direction offered by survivor Amy Harwell,[7] nurse scientist Nessa Coyle,[8] hospice and palliative care nurse Tani Bahti,[61] and available data, guidelines, and consensus reports, supported by a holistic theoretical approach such as Modeling and Role-Modeling[65] are useful in planning and delivering holistic interventions, services, and programs to meet the needs of this population.

To a significant degree, the needs of people living with metastatic and advanced cancers, including family caregivers, are unrecognized, understudied, and unmet, even as this unique survivor population continues to grow with advances in cancer treatment and long-term management. Although evidence to support a full programmatic approach is still lacking, we must begin now to consistently address their wants and myriad concerns, changing or adapting practice as evidence becomes available. Health policy changes supporting provision of services, particularly by nurses, would facilitate development of evidence-based interventions for these populations. Hearing the voices of this population-along with caring, competencies, and curiosity on the part of clinicians and researchers-will be the key to identifying and responding to their needs.

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