Amy R. Lipson, PhD, is a senior research associate, and Sara L. Douglas, PhD, RN is the Arline H. & Curtis F. Garvin Professor in Nursing Excellence and assistant dean for research at the Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, Ohio.

Gathering data on goals of care for patients with advanced cancer throughout the illness trajectory, including end-of-life (EOL) goals, can help guide treatment decisions.

 Communication between the health&shy;care team and oncology patients can increase the likelihood that patients receive treatment aligned with their own 

 Accurate assessment is an important aspect of ensuring goals of care align with treatment.

 a team of researchers at Frances Payne Bolton School of Nursing, Case Western Reserve University, sought to exam&shy;ine whether there were differences in resource use at EOL between patients with advanced cancer who identified goals of care focused heavily upon survival versus those who identified goals of care heavily focused on quality of life (QOL). The larger study used a longitudinal descriptive study design and collected data on patients with a diagno&shy;sis of stage 4 gastrointestinal or lung cancers. Data were collected at University Hospitals Seidman Cancer Center in Cleveland, Ohio, every 3 months until the end of the 15-month study period or patient death. Subjects were asked at each time point, “Regarding your care, what is most important to you right now?” (

). Anchors on the 100-point visual analog scale were QOL and survival, with a value of 50 indicating a goal with equal weight given to both domains. Values greater than 50 indicated a goal of care that focused more on survival than QOL. The goals of care data reported here were obtained closest to the sub&shy;ject’s death date.

In this sample of 168 patients with advanced cancer who died during the 15-month study period, the majority of the sample were Caucasian (69.0%) and female (51.8%) and had a diagnosis of gastrointestinal cancer (66.1%), an ECOG performance score of 1 (64.9%), and a mean age of 63.9 (SD = 10.4). Prior to death, 62.9% had an advance directive, 54.2% had received palliative care, and 47.6% had received hospice services. Within 30 days prior to death, 45.5% of the sample had at least 1 visit to the emergency department and 58.1% had at least 1 hospital&shy;ization (with 19% of those being admitted to an intensive care unit).

To further examine how the patients’ goals of care were associated with resource use at EOL, we focused on data in the tails of the goals-of-care scale. We compared resource use between those falling in the group more focused on survival with those more focused on QOL. Those focused more on QOL were more likely to enroll in hospice. All other resource use comparisons (emergency department visits, hospitaliza&shy;tions, intensive care, and palliative care) were not statisti&shy;cally significant. We found that by asking patients a sim&shy;ple question regarding their goals of care, we could assess whether they wanted care that was focused more on survival or QOL. In addition, we found that those who favored goals of care emphasizing QOL had EOL care that was consistent with this goal.

Oncology nurses are in a unique position to talk with patients regarding their goals of care.

 Since the establish&shy;ment of the End-of-Life Nursing Education Consortium in 2000, a collaboration between the American Association of Colleges of Nursing and City of Hope, Duarte, California, to improve palliative care nationwide, momentum has been building to create programs that train nurses to initiate these kinds of discussions with patients. This type of open com&shy;munication can ensure that patient information regarding goals of care is communicated to the healthcare team and, as a result, enhance the likelihood that the patient receives EOL care consistent with their own goals.

You JJ, Fowler RA, Heyland DK; Canadian Researchers at the End of Life Network (CARENET). Just ask: Discussing goals of care with patients in hospital with serious illness. 

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Balogh EP, Ganz PA, Murphy SB, Nass SJ, Ferrell BR, Stovall E. Patient-centered cancer treatment planning: Improving the quality of oncology care. Summary of an Institute of Medicine Workshop. 

2011;16(12):1800-1805. doi:10.1634/theoncologist.2011-0252.

Wittenberg E, Ferrell B, Goldsmith J, Buller H, Neiman T. Nurse communication about goals of care. 

Lipson AR, Douglas SL. Factors influencing care decisions for patients with advanced cancer. 

Articles

Researchers exam&shy;ined whether there were differences in resource use at end of life between patients with advanced cancer who identified goals of care focused heavily upon survival versus those who identified goals of care heavily focused on quality of life.

Impact of Goals of Care on Resource Use at End of Life

Family caregiver satisfaction with end-of-life (EOL) care is key to better understanding patient EOL expe&shy;riences.

 In measuring family caregiver satisfaction, it is important to conceptualize what is considered a “good death” or “good dying process.”2 Understanding the bereaved family caregiver’s satisfaction can help lead to improved EOL care for patients.

 In particular, families of patients who die in their preferred location are more likely to be satisfied with EOL care provided.

Most people can identify the elements of their loved one’s experience of dying that were “satisfactory.” Often, these cen&shy;ter around using less-aggressive medical care and earlier hos&shy;pice referrals.

A longitudinal National Institutes of Health—funded study (NRO14856) conducted at the Frances Payne Bolton School of Nursing by Sara L. Douglas, PhD, RN, is examining aggres&shy;siveness of EOL care in advanced cancer among patients, fam&shy;ily caregivers, nurses, and physicians.

Approximately 2 months following the death of a loved one with advanced cancer, a phone interview is conducted with the bereaved family caregiver. The 13-item version of the Family Satisfaction with End-of-Life Care (FAMCARE-P13) scale asks the caregiver to rate responses to questions on symptom management, inclusion of family in treatment decisions, prognosis, healthcare provider (doctor and nurse) availability to the family, coordination of care, and overall satisfaction with care in the week preceding death.6 Family caregivers rate their level of satisfaction from “very satisfied” to “very dissatisfied.”

Additionally, 2 open-ended questions ask family caregivers to discuss (1) aspects of care that may have caused them to think it was time to stop cancer therapy and focus on com&shy;fort and (2) if the care and treatment received was consistent with their loved one’s wishes. An advantage of assessing fam&shy;ily caregiver satisfaction with EOL care both qualitatively and quantitatively is the ability to compare and relate both sets of data to gain a more accurate understanding of the caregiv&shy;er’s perspective,

 including grief and bereavement outcomes among family caregivers following death. Bereaved family caregivers openly share their thoughts, lending insight that can inform future oncologic EOL research to provide clini&shy;cal practice guidelines toward improving EOL experiences for patients and families.

Oncology nurses are well positioned to make significant impacts in EOL satisfaction in advanced cancer. Preparation is key to improving EOL care experiences for these patients and their families. Oncology nurses can encourage patients and families to have conversations about EOL wishes early on, including discussions about patient and family values,

 which are often shared and can influence EOL decision making.

Oncology nurses can answer EOL-related questions and refer patients and families to appropriate resources such as chaplaincy, social work, or counseling services as needs are identified at any point on the disease trajectory—and even after death for the bereaved family. In doing this, nurses can help empower patients and families to initiate such conversa&shy;tions with each other and with healthcare providers, as well as reduce anxiety. Research shows that patients who engage in EOL conversations with their physicians are more likely to receive care that is consistent with their wishes, which can reduce suffering near the EOL.

Encouraging patients and families to become comfortable with speaking about death can reduce psychological distress and bereavement and increase the likelihood that the med&shy;ical care provided will be consistent with the patient’s per&shy;sonal preferences.

Realizing one’s own mortality and how it can change outlook, perhaps even for the better, may also affect how caregivers plan for the end of their own lives.

In summary, the death of a loved one with cancer creates a void in the lives of family and friends left behind. One of the most salient memories in the minds of family caregivers involves the EOL experience of their loved one, followed by its impact on the grieving process. Future research should use oncology nurses, nurse researchers, and an interdisci&shy;plinary team to examine family caregiver satisfaction with EOL care provided, with bereavement outcomes measured over time. This will help identify specific areas that require more focus, with a goal of improving the EOL experiences for patients with advanced cancer and subsequently out&shy;comes with their families.  

is a postdoctoral fellow, Frances Payne Bolton School of Nursing Case Western Reserve University, in Cleveland, Ohio. 

is Arline H. & Curtis F. Garvin Professor and assistant dean for research, Frances Payne Bolton School of Nursing at Case Western Reserve University, Cleveland, Ohio.

Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life

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2. Miyashita M, Morita T, Sato K, et al. Good death inventory: a mea&shy;sure for evaluating good death from the bereaved family member’s per&shy;spective. 

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3. Sadler E, Hales B, Henry B, et al. Factors affecting family satisfac&shy;tion with inpatient end-of-life care. 

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4. Wright AA, Zhang B, Ray A, et al. Associations between end-of-life dis&shy;cussions, patient mental health, medical care near death, and caregiver bereavement adjustment. 

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5. Lipson AR, Douglas SL. Factors influencing care decisions for patients with advanced cancer. 

6. Beaumont C, Nekolaichuk C. FAMCARE and FAMCARE-2 guide&shy;lines. Edmonton Zone Palliative Care Program website. palliative.org/ NewPC/_pdfs/tools/FAMCARE%20Guidelines-15Aug12.pdf. Updated August 15, 2012. Accessed September 28, 2017.

Nursing Research: Generating and Assessing Evidence for Nursing Practice

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8. Winter L. Patient values and preferences for end-of-life treatments: are values better predictors than a living will? 

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9. Mack JW, Weeks JC, Wright AA, et al. End-of-life discussions, goal attainment, and distress at the end of life: predictors and out&shy;comes of receipt of care consistent with preferences. 

. 2010;28(7):1203-1208. doi: 10.1200/JCO.2009.25.4672.

10. National Cancer Institute. Planning the transition to end-of-life care in advanced cancer (PDQ)—health professional version. National Cancer Institute at the National Institutes of Health website. cancer.gov/ about-cancer/advanced-cancer/planning/end-of-life-hp-pdq. Updated March 1, 2017. Accessed September 28, 2017.

Family caregiver satisfaction with end-of-life care is key to better understanding patient experiences.

Family Caregiver Satisfaction With End-of-Life Care Following Advanced Cancer

Aggressiveness of care at end of life (EOL) can lead to worse patient outcomes and more difficulty for their caregivers in dealing with their grief after death.

 This may include hospital stays, new chemotherapies in last 30 days of life, and intensive care unit admissions. African Americans receive more aggressive care at EOL than other groups and, as a result, have prolonged suffering and a worse quality of life at EOL compared with Caucasians. 

National studies examining racial differences in EOL planning reported that African Americans were half as likely as Caucasians to have an advance directive.

Oncology nurses are instrumental in facilitating advance directive planning.

 The Oncology Nursing Society recognizes that oncology nurses are key to advocating for patient EOL care.

 One way to facilitate advocacy is to continue to understand the factors that lead to treatment decisions so that nurses can continue to gain in their knowledge and comfort in assisting patients and caregivers with discussing EOL care, goals, and advance directives. 

FACTORS INFLUENCING TREATMENT DECISIONS AT EOL

Preliminary data from an ongoing research study (NRO14856) focused on factors influencing treatment decisions at EOL and goals of care at EOL for adult patients with stage IV gastrointestinal and lung cancer.9 All patients were interviewed at baseline and every 3 months for the 15-month study period. They were asked questions using reliable tools (eg, an 8-item scale and questionnaire) that focused on their goals of care and importance of factors that influenced their treatment decisions.

 The average age was 63 years old. Among the group, 28% were African American and 50% were women.

African Americans identified 3 factors that influenced their treatment decisions as more important to them than they were to Caucasians: (1) a wish to live as long as possible, (2) the role that spiritual/religious beliefs play in influencing their treatment decisions, and (3) their desire to be free of pain.Regarding the most important goals of care—length of life versus comfort care&mdash;there was no difference between African American and Caucasian patients. The study is ongoing, but these preliminary results on 225 patients provide some insights related to implications for practice.

Our finding that there were some differences by ethnicity regarding the importance of some factors influencing treatment decisions at EOL reinforces the need for EOL communication tailored to race and ethnicity. Understanding the key role that religious/spiritual beliefs have on treatment decisions in the African American community is important when facilitating advance directive discussions, and including the patient’s family in the discussion has been identified by experts as the key to the success of such discussions.

Other research has shown that when people do not have advance directives, they are more vulnerable to having decisions made that do not follow their wishes and do not allow for a dignified death. Sharing such information is important if we are to ensure that all patients will make the most informed decisions regarding plans at EOL.

Finally, acknowledging the patient’s wish to live as long as possible is important. Although it is vital to respect individuals’ rights to be hopeful and wish for miracles, healthcare professionals also need to discuss the importance of planning, in case the outcome is not as hoped for. This can often be seen as a difficult task. However, it is crucial for the healthcare community to continue to strive to recognize the need for tailored discussions for advance directives and EOL planning, to include the family whenever possible, and to recognize the patient and family’s needs to continue to hope for the most positive outcomes.

1. Wright, A., Baohui, Z., Ray, A., Mack, J. Trice, E., Balboni, T., Mitchell, S., … Prigerson, H. (2008). Associations between EOL discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 300(14):1665-1673. doi:10.1001/jama.300.14.1665.

2. Sanders, J., Robinson, M., Block, S. (2016). Factors impacting advance care planning among African Americans: Results of a systematic integrated review. Journal of Palliative Medicine, 19(2):202-27. doi: 10.1089/jpm.2015.0325.

3. Zhang, A. Y., Zyzanski, S. J., & Siminoff, L. A. (2012). Ethnic differences in the caregiver’s attitudes and preferences about the treatment and care of advanced lung cancer patients. Psycho-Oncology, 21(11), 1250-1253. doi:10.1002/pon.2031.

4. Earle, C., Landrum, M., Souza, J., Neville, B., Weeks, J., Ayanian, J. (2008). Aggressiveness of cancer care near the end of life: Is it a quality-of-care issue? Journal of Clinical Oncology, 2008(26),3860—3866.

5. Moss, K. O., & Williams, I. C. (2014). EOL preferences in Afro-Caribbean older adults: A systematic literature review. Omega, 69(3), 271-282. doi:10.2190/OM.69.3.

6. Ramnarace, C. (2011). Fewer African americans plan for end-of-life care. AARP Bulletin, January 7, 2011.

7. Rao, JK, Anderson, LA, Lin, FC, Laux, JP. (2014). Completion of advance directives among US consumers. Am J Prev Med; 46(1):65-70.

8. Ryan, D. & Jezewski, M. (2012). Knowledge, attitudes, and practice behaviors of oncology advanced practice nurses regarding advanced care planning for patients with cancer. Oncology Nursing Forum, 37(6), E400-10 doi: 10.1188/10.ONF.E400-E410.

9. Lipson, A., & Douglas, S. (2015). Factors influencing care decisions for patients with advanced cancer. Oncology Nursing News,9(2), 53.

10. Winter, L., (2013). Patient values and preferences for EOL treatments: are values better predictors than a living will? Journal of Palliative Medicine, 16(4), 362-368. doi: 10.1089/jpm.2012.0303.

11. Neal, J., Weinfurt, K., Burnett, C., Balshem, A., Benson, A., Castel, L., … Schulman, K. Perceptions of Patients and Physicians Regarding Phase I Cancer Clinical Trials: Implications for Physician-Patient Communication. (2003) Journal of Clinical Oncology. 21(13) 2589-2596. doi: 10.1200/JCO.2003.10.072 12. Plante, T. G. (2010). The Santa Clara strength of religious faith Questionnaire: Assessing faith engagement in a brief and nondenominational manner. Religions, 1, 3—8.

13. National Consensus Project. Clinical practice guidelines for quality palliative care, 3rd ed. 2013. http://nationalconsensusproject.org/NCP_Clinical_Practice_Guidelines_3rd_Edition.pdf.

An ongoing study found some differences by ethnicity regarding the importance of factors influencing treatment decisions at end of life, which reinforces the need for EOL communication to be tailored.

How Race Can Influence Care Goals and Treatment Decisions in Advanced Cancer

Amy R. Lipson, PhD, is a Research Associate, and Sara L. Douglas, PhD, RN is Associate Professor and Assistant Dean for Research, at the Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, Ohio.

A new study funded by the National Institutes of Health (NRO14856), “Factors Influencing Cancer Care Decisions,” is currently underway at the Frances Payne Bolton (FPB) School of Nursing at Case Western Reserve University (CWRU) and the Seidman Cancer Center at Case Medical Center. The study focuses on the complex practice of shared decision-making in advanced cancer patients.

Prior research has focused on the examination of healthcare communication with patients or families, or providing more education to patients or families regarding end-of-life treatment decisions.  Results from those studies have shown very mixed results, however. 

This research team believes aggressiveness of care decisions that are made at end-of-life (EOL) are influenced by many factors, including healthcare providers, patients, and family—and these factors are very complex in the way that they influence aggressiveness of care decisions.   

The team, headed by FPB Associate Professor Sara L. Douglas, PhD, RN, is looking at the dyadic processes between oncologist and patient and the influences of the family caregiver and nurse on decision making. Clinical decisions are most often shared, with oncologists providing information and guidance about options and patients evaluating and choosing among the options. In addition to Douglas, the research team includes Barbara J. Daly, PhD, and Christopher J. Burant, PhD, both of the FPB School of Nursing, and Neal Meropol, MD, from the School of Medicine, Case Western Reserve University.

Many patients are influenced in their decisions by family caregiver, oncologist and/or RN evaluations of the appropriate focus of care. Thus, the phenomenon of “decision” is incompletely examined if only one component of the decision-making process is considered and measured independently of the others. This study is designed to help describe the complex nature of the decision-making process involved in EOL treatment for these vulnerable patients. 

Identifying a model that predicts the utilization of aggressive EOL care is an important purpose of this study. The model will incorporate the focus of care (from the perspective of the oncologist, patient, and the oncologist—patient dyad), as well as clinical triggers, EOL preferences, treatment effectiveness, and evaluation of the focus of care (from the perspectives of the caregiver and the RN). 

The researchers hope that examining dyadic relationships between oncologists and patients over time will enable them to describe key aspects that influence EOL treatment decision making. In addition, by including the influence of caregivers and RNs on EOL decision making, the researchers hope to be able to examine factors external to the patient—oncologist dyad.

The study is using a longitudinal, descriptive, correlational design and is recruiting patients with stage IV gastrointestinal or lung cancers. If the patient has a caregiver, that individual is being recruited to participate as well. Baseline data regarding EOL values, religiosity, and optimism are gathered on patients and their caregivers.

Healthcare providers are asked (at baseline) to answer questions related to their own personal EOL values, their comfort with caring for dying patients, and their sense of religiosity. Every 3 months, patients, caregivers, oncologists, and nurses are asked to evaluate treatment effectiveness, their focus of care, the patient’s health-related quality of life, and for oncologists, their predicted survival for the patient. 

We anticipate a sample size of 300 patients, 60% of whom will have caregivers enrolled in the study. There is growing concern that patterns of overly aggressive interventions in the final weeks and months of life seriously detract from quality of life and may not be consistent with patient preferences and values. We believe that it is essential to apply more comprehensive and sophisticated designs in order to be able to identify and implement interventions or decision support systems that can be tailored in such a way as to account for the complex interaction among factors.

Our analysis is expected to yield information that will help us to develop tailored, meaningful interventions that are more likely to be successful in facilitating communication and decision making for those involved in EOL decision for patients with advanced cancer, and we look forward to sharing our findings with at the conclusion of the study.

A new study funded by the National Institutes of Health (NRO14856), "Factors Influencing Cancer Care Decisions," is currently underway at the Frances Payne Bolton (FPB) School of Nursing at Case Western Reserve University (CWRU) and the Seidman Cancer Center at Case Medical Center. The study focuses on the complex practice of shared decision-making in advanced cancer patients.

Factors Influencing Care Decisions for Patients With Advanced Cancer

Sara L. Douglas, PhD, RN, associate professor, Frances Payne Bolton School of Nursing, Case Western Reserve University, discusses the importance of focusing on the caregiver of a patient with cancer.

Douglas says most research has shown that caregivers are highly stressed about their new role as caregiver as well as over the outcome of their loved one. Nurses currently focus on how a patient is doing, but Douglas says there needs to be a focus on caregivers too.

Steps should be taken to incorporate the caregiver into the conversation and to ensure they are not feeling distressed. If they do feel distressed, supplemental materials should be provided.

Sara Douglas Discusses Focusing on Caregivers

Sara L. Douglas, PhD, RN, associate professor, Frances Payne Bolton School of Nursing, Case Western Reserve University, discusses the results of a pilot study that examined the benefit of having a distance caregiver (a relative) present via live video while the cancer patient met with doctors.

Douglas says the study showed a statistically significant and clinically significant reduction of anxiety for the distance caregivers before the meeting versus after the meeting. Before the meeting, Douglas says the distance caregiver was given a chance to talk with their relative and tour the facility. After the meeting, the distance caregivers were given a chance to talk privately with the patient and other family members or with nurses on staff, Douglas says.

Local caregivers were also relieved to be able to share the experience with the distance caregiver, Douglas says.

Douglas says the pilot study will be expanded to a larger group of patients.

Sara L. Douglas, PhD, RN, discusses the results of a pilot study that examined the benefit of having a distance caregiver (a relative) present via live video while the cancer patient met with doctors.

Sara Douglas on the Benefits of a Distance Caregiver

Registries, large databases of patient information collected in a systematic, standardized fashion, most often focus on biologic measures, such as pathology, radiology, and laboratory results, to track incidence and prevalence of disease as well as causative factors. They also provide data for large-scale observations and measurement of outcomes of prevention, treatment, and measures of quality of care. Currently, the National Program of Cancer Registries collects data on cancer cases occurring among 96% of the US population.

	A nurse-initiated psychosocial cancer registry can provide insight about quality of life (QOL) in patients with cancer.

 Evidence about QOL, as perceived by the patient, is a concern of all clinicians but is of particular importance to the bedside nurse. There has been a great deal of study of QOL of cancer patients; however, most of these reports focus on narrow or limited samples and typically one specific cancer type. Having access to a registry that enrolled patients with diverse cancer types and collected QOL data could be very useful to practicing nurses.

	Before deciding to use a registry, it is important to know the characteristics of the patients enrolled. Data for our registry were collected in an outpatient clinic at an NCI-designed Comprehensive Cancer Center and included all cancer diagnoses and stages. Among the inclusion criteria were >18 years of age, ability to comprehend the English language, having a new diagnosis of cancer, and receiving ongoing care at the cancer center. Exclusion criteria were cognitive impairment or immediate referral for a bone marrow/ stem cell transplant, because much of this type of treatment is conducted in the inpatient setting.

	Demographic and clinical data were gathered at enrollment, and QOL was measured using several questionnaires administered at enrollment, 3 months, and 9 months.

	Patient demographic data included education level, employment status, and income. Cancer demographics were gathered for tumor type and staging and for the patient’s history of cancer and ECOG performance status.

	The project was approved by the hospital’s Institutional Review Board. Of the 410 participants in this registry, the majority were married (64%), Caucasian (76%), and female (57%); the mean age was 59.6 (range, 18-90 years).

	Several instruments were used in this registry to capture data about various aspects of QOL, including mood state, functional status, and spiritual well-being (

). Measuring several dimensions of QOL is important in designing a registry so that it can serve a variety of purposes. For example, when planning to initiate or improve supportive care services by increasing access to palliative care or changing social services staffing,it would be useful to know if services should be targeted to patients with particular demographic or clinical characteristics.

			Table 1.Second-Generation Proteasome Inhibitors

						Eastern Cooperative Oncology Group (ECOG)

						Functional Assessment of Cancer Therapy-General Scale (FACT-G)

						Functional Assessment of Chronic Illness Therapy- Spiritual Well-Being Scale (FACIT-Sp)

Registries, large databases of patient information collected in a systematic, standardized fashion, most often focus on biologic measures, such as pathology, radiology, and laboratory results, to track incidence and prevalence of disease as well as causative factors.

Sara L. Douglas, PhD, RN