You kept my eyes from closing; I was too troubled to speak. I thought about the former days, the years of long ago; I remembered my songs in the night. My heart meditated and my spirit asked: “Will the Lord reject forever? Will he never show his favor again? Has his unfailing love vanished forever? Has his promise failed for all time? Has God forgotten to be merciful? Has he in anger withheld his compassion?” Then I thought, “To this I will appeal: the years when the Most High stretched out his right hand” (Psalm 77:4-10, NIV).
The psalm above is a lament and prayer about suffering. The circumstances surrounding this suffering are unknown. What is clear is intense spiritual anguish; questions regarding God's justice and love are illuminated. In situations of suffering, nurses are poised to offer highly skilled care and human responses that illuminate God's love and grace. Nurses have long held the value of compassionate care for the dying and the philosophy that caring and healing exist apart from cure. Expertise in palliative care (PC) involves comprehending, engaging, and responding holistically to human suffering. Human anguish and spiritual pain elicit compassion from nurses, prompting the giving of grace instead of awkwardness, hope instead of despair, and comfort instead of suffering (Matzo & Sherman, 2019). Obtaining research evidence about the preferences of patients and family members to receive PC information is an important step toward bridging the gap of whole person, patient-centered care which is often fragmented in healthcare systems, yet so radically needed to attend to physical, spiritual, and existential suffering. The purpose of this article is to describe the results of the authors' pilot study about understanding and preferences of receiving PC support information by adult patients diagnosed with a life-threatening condition and their family caregivers.
The concept of autonomy is recognized as a guiding ethical principle to help equip individuals to gain independence throughout their lives (Lavoie, Blondeau, & Picard-Morin, 2011). The ethical principle of autonomy is a major component of patient-centered care during sharing of information about PC and end-of-life (EOL) and delivery of PC/EOL care to patients with acute, chronic, and life-threatening conditions (Zalonis & Slota, 2014). Unfortunately, evidence exists that PC support as a healthcare option and its patient benefits including physical symptoms and emotional/spiritual support are not commonly understood by the public, including patients' families (Hoerger, Perry, Gramling, Epstein, & Duberstein, 2017; McIlfatrick et al., 2013; Wittenberg-Lyles, Goldsmith, & Platt, 2014). Palliative care is particularly important during chronic or serious illness and extends to grief support for bereaved family members after a death (Hoerger et al., 2017).
A faith-based approach to nursing practice includes advocating for a patient, fostering patient autonomy in healthcare decisions, and providing high-quality, patient-centered care and PC support when appropriate. Engaging patients who have a poor prognosis in early PC discussions is recognized as an essential provider practice by the National Institutes of Health and National Institute of Nursing Research (National Institute of Nursing Research, 2014). The Institute of Medicine's (IOM, 2014) report, “Dying in America: Improving Quality and Honoring Individual Preferences near the End of Life,” included five recommendations to inform healthcare providers about the state of American healthcare and research needs, especially in the pioneering research field of PC (Meghani & Hinds, 2015).
Two IOM recommendations strongly support the need for public education regarding the purpose and benefits of PC. The “Delivery of Care” recommendations offer evidence indicating PC support is associated with improved patient healthcare outcomes and improved quality of life (IOM, 2014; Meghani & Hinds, 2015). Research has shown that early PC support has increased the 1-year survival rate for patients with advanced cancer (Bakitas et al., 2015). The IOM's “Public Education and Engagement” recommendation addressed the critical need for public education about PC and EOL-care choices.
The purpose and benefits of PC are important to understand before being faced with a health crisis. Knowledge of PC empowers individuals and caregivers with crucial information for making difficult healthcare decisions. Health-promoting PC is based on the tenet that healthcare should be participatory and involve the patient and family (Aoun, Slatyer, Deas, & Nekolaichuk, 2017). Health-promoting PC activities are designed for implementing educational programs and reorienting health services toward community partnerships (McIlfatrick et al., 2013). (See Sidebar: Palliative Care.)
Evaluation of health-promoting PC education is pioneering research. In support of the fifth IOM recommendation, the 2014 (IOM) report provided evidence that 70% of Americans do not know about or have not heard of PC and continue to lack fact-based knowledge about PC and EOL choices (Lane, Ramadurai, & Simonetti, 2019; Shalev et al., 2018). The IOM report also introduced the phrase “informed choice” related to the need for public education, purporting that patients and family members have a high need for PC support information. Hoerger et al. (2017) described factors contributing to delayed healthcare provider sharing of early PC supportive information, including providers' commonly shared beliefs, fears, and perspectives that early PC-focused discussions may take away hope. This is often the main reason that impedes healthcare providers' decision to engage patients in early discussions about PC benefits.
Research demonstrates that timely access to PC can foster improved patient outcomes (McCorkle et al., 2015). Education about the purpose and benefits of early PC options supports empowerment of patients and family members to consult providers about PC-support options rather than relying on providers to offer this type of support only during EOL care (Hoerger et al., 2017; Peterson, 2014).
This study employed a descriptive, single-site qualitative design. Convenience sampling was used to enroll 30 total eligible subjects consisting of 12 patients and 18 designated family caregivers. Patient subjects were enrolled if they (a) were 18 years or older; (b) were able to read and speak English; (c) had a chart recorded life-threatening condition; and (d) provided consent. Family caregivers of eligible patient subjects were enrolled if they (a) were 18 years or older; (b) were able to read and speak English; (c) were providing home care to an enrolled eligible patient; and (d) provided consent. Eligible subjects were recruited from a magnet-accredited hospital within a major Midwest medical center. This study required institutional review board (IRB) applications by three institutions (two universities and the data-collection hospital) because the investigators were employed at two different universities. After obtaining IRB approvals, researchers screened and recruited eligible participants at the single data-collection hospital.
Using a private room at the approved data-collection hospital, researchers conducted semistructured interviews individually with each enrolled subject (i.e., adult patients and designated family caregivers). The enrolled subjects' interviews were led and conducted by seven investigator-trained research team members with one researcher at a time, who were oncology nurses employed at the data-collection hospital. Study authors planned and provided the research team with 5 hours of protocol delivery training that covered (a) didactic content on PC practices (consent procedures); (b) PC communication skills practice (establishing a therapeutic alliance with subjects; conveying good listening skills; conveying empathy) through role-playing with the authors; (c) the study protocol policies and IRB-implementation procedures; and (d) a comprehensive protocol resource manual (Pittroff & Hendricks-Ferguson, 2018). The trained research team members asked investigator-developed, open-ended questions of the participants regarding their understanding of PC support and preferences to receive PC support information for their loved one. “From whom would you prefer to learn about PC: your physician, a nurse, a social worker, a chaplain, or a different healthcare team member?” The trained members also asked probing questions to encourage and capture richer responses from the subjects. “Tell me more about your preferences to receive PC.”
Each interview was audio-recorded and transcribed verbatim by a professional transcription service. The investigators deleted personal identifiers and coded each transcript with a number to protect the identity and confidentiality. The investigators reviewed and compared each transcript with the original recording to ensure accuracy.
The collected data included the subjects' demographic information and responses to open-ended questions during individual interviews. Descriptive analyses were used to summarize the subjects' demographic information. The subjects' transcribed interview data were analyzed using semantic content analysis procedures (Krippendorff, 2018). Content analysis of the audio-recorded interviews of the patients and designated family caregivers revealed their understanding about PC and preferences for receiving information about PC support. To ensure reliability of collected data, two investigators independently compared the audio-recorded interviews with the transcribed interviews for accuracy and coded the transcribed data. Investigators then independently reviewed the coded data to identify common factors/themes, subsequently discussing initial and emerging factors during scheduled meetings to ensure reliability and credibility of each team member's coding. After extensive review of the coded data and proposed themes and ongoing discussions between the two investigators, an initial agreement rate of 95% for the coded data was reached. During ongoing meetings, the investigators reached a 100% consensus for the final coding and themes. This process ensured accuracy, reliability, and credibility of the final analyses and proposed conclusions about the study results.
A total sample of 30 subjects (12 patients and 18 primary family caregivers) consented to the study and participated in audio-recorded interviews from January 2013 to December 2015. Among 13 eligible patients, 12 (92%) consented and participated in this study. Among 20 eligible designated family caregivers, 18 (90%) consented and participated in this study. The primary reason given by the three subjects (one patient and two caregivers) for declining enrollment in the study was significant emotional distress. The collected demographic data for the total enrolled sample is outlined in Table 1. The total enrolled sample was unevenly distributed according to gender for both the patients (58% female; 50% male) and designated family caregivers (72% female; 27% male). The median age was 57 for patients and 48 for designated family caregivers. Most enrolled patients had a cancer diagnosis.
Table 2 provides a summary of the six identified factors (or themes) related to preferences for a patient to receive PC information, as reported by both patients and their designated family caregivers. The six factors (or themes) included: 1) improved clarity about PC service; 2) education about PC from nurses; 3) family variance about PC preferences; 4) sooner than later referrals; 5) freedom from pain, impairment, or function; and 6) knowing options ahead of time. Table 2 also outlines exemplar quotes for each factor and the total sample number according to the frequency of each identified factor/theme that emerged from the analyzed interview data.
The results of this pilot study demonstrate that adult patients diagnosed with a life-threatening condition and their family caregivers would have preferred to receive PC support information earlier when making decisions for the patient's care. The authors propose that the pilot study results may help reduce healthcare providers' fears about engaging in early discussions about PC supportive care with patients and family caregivers.
Although this is a small pilot study, subject receptivity to participate was high (90%-92%). The illustrative quotes in Table 2 provide evidence of participating subjects' thoughtful reflections. When healthcare providers do not share PC support as a treatment option, the ethical principle of patient autonomy (to make informed healthcare decisions) is at risk of being violated.
The evaluation of audio-recorded interview skills revealed delivery variations. Still, subjects shared rich perspectives. The identified major themes from responses to the open-ended questions provide useful knowledge and contribute to the scientific base about preferences to receive PC support earlier rather than later.
Strengths and Limitations
Study strengths include evidence of PC-information insights and perspectives held by adult patients with a poor prognosis and their designated family caregivers. Additionally, results provide support for future evaluation of PC-communication interventions focused on evaluating changes in patients' and family caregivers' knowledge, attitudes, and behaviors related to receiving early versus delayed PC information.
Several study limitations apply, including the small total sample size (n = 30). Results did include both patients and designated family caregivers. Second, the sample was not diverse regarding gender representation and ethnicities (i.e., most subjects were female and Caucasian). Third, researchers used an investigator-developed set of interview questions because no published PC interview questions with established validity were available. Fourth, because this is a small descriptive pilot study, randomization procedures were not possible. Fifth, because seven trained oncology nurse team members conducted the interviews, concern exists that each interviewer may not have presented the interview questions to the subjects consistently according to protocol. Sixth, the researchers had allowed insufficient time for training the nurse team members to fully cover study implementation. Fortunately, the staff nurses recruited to serve as research team members were highly experienced healthcare providers receptive to receiving individual interview training. The authors recommend providing staff nurses with 2 days of research training when planning similar study designs. Lastly, the findings from this small pilot study are not generalizable, and reported results must be interpreted with caution.
IMPLICATIONS FOR PRACTICE
According to the Center to Advance Palliative Care, the training of PC healthcare teams should include these elements: (a) didactic and role-playing activities to master delivery of compassionate communication to assess patients' healthcare goals and to help manage patients' difficult symptoms (e.g., pain, fatigue); and (b) didactic education about the benefits of offering interventions to help patients experience high quality-of-life outcomes during serious and life-threatening illness (Kozhevnikov, Morrison, & Ellman, 2018). Palliative care teams can monitor and deliver sustained stewardship of PC-supportive resources for healthcare providers to avoid delivery of futile, often expensive emergency care interventions for patients with poor prognoses. The study results provide supportive evidence to inform healthcare providers that adult patients and family members prefer to receive PC information early in a serious-illness trajectory and are very receptive to receive PC information from nurses. These study results have relevance for staff nurses, PC teams, and institutions that currently provide PC-supportive services or who are in the planning phases of developing a PC service. Finally, the results speak clearly to faith-based institutions and practitioners who desire to demonstrate the vocation of healing. Providing PC services that attend to patient/family needs and preferences demonstrates a realm of genuine care and compassion.
Qualitative studies have the potential to reveal the voice of perhaps the most silent and vulnerable society, those patients dealing with chronic or serious and life-limiting illness. Fostering patient autonomy in making healthcare decisions and honoring patients' and family members' goals, wishes, and needs to prevent patient suffering is the philosophical cornerstone of PC support. As disciples of Jesus, we are called to preach the good news, release the captives, recover sight to the blind, and release the oppressed (Luke 4:18). Uncovering patients' preferences about receiving PC-supportive information and empowering patients with serious and/or life-threatening illnesses to make informed decisions about whether to receive PC support is an ethical responsibility of all healthcare providers. The study results provide important evidence for healthcare providers to consider that (a) patients and family members often prefer to receive PC-supportive services earlier when a patient has a serious and a life-threatening illness; and (b) an earlier PC consultation for affected patients may also foster high-quality, more comprehensive patient-centered care for patients and families experiencing life-limiting illness. The authors recommend that other investigators conduct research with larger, more diverse populations to evaluate knowledge about PC support and preferences to receive PC support by adult patients with serious and/or life-threatening illnesses and their family caregivers. Through research and knowledge about early PC preferences, perhaps the suffering of those dealing with life-limiting illness will be lessened and the love, care, and abiding presence of God illuminated.
Sidebar: Palliative Care
Palliative care is specialty medical care focused on patients with serious illnesses. The goal is to give relief to both the illness symptoms and the family caregivers' stress in order to improve quality of life for all involved. One distinction of palliative care is that its foundation is based on patient need rather than patient prognosis. Covering the entire life span, palliative care requires specialty training for nurses, physicians, and other healthcare providers who participate in it (Center to Advance Palliative Care [CAPC], n.d.).
As part of the Icahn School of Medicine at Mt. Sinai Hospital in New York City, the CAPC provides a wealth of resources for clinicians, including training courses with continuing education offerings. Clinical courses include symptom and pain management, communication skills, advance care planning, and best practices in dementia care, among others. After completion of a study unit, a CAPC Designation Certificate is awarded, and institutions or healthcare providers may obtain CAPC Designation status upon completion of specific required continuing education courses. The CAPC is the national leader in providing tools and resources in palliative care with the mission of ensuring key skills for all clinicians working with patients with life-limiting illnesses, as these skills are typically not taught in standard medical or nursing education. Specific tool kits are also available for oncology teams, hospitalists, and critical care nurses.
The Family Caregiver Alliance (2016) notes that palliative care is often called “supportive care.” Many people confuse hospice and end-of-life care with palliative care, when in fact, the latter is unique in providing better quality of life and hope to seriously ill patients and their families who are not necessarily at their end of life. The most common conditions included in palliative care are brain diseases (stroke, Parkinson's disease, amyotrophic lateral sclerosis), Alzheimer's disease and other dementias, cancer, chronic obstructive pulmonary disease, congestive heart failure, HIV/AIDS, hepatic and renal failure, spinal cord injuries, and multiple sclerosis. Frequently addressed issues include pain, fatigue, anxiety, depression, anorexia, nausea, constipation, shortness of breath, sleep issues, and adjustment to living with the diagnosis.
The National Hospice and Palliative Care Organization (2019), founded in 1978, is the nation's largest organization for professionals and healthcare providers focused on providing this high-quality care. This organization also emphasizes excellent information for patients and caregivers, including video clips and web links to important resources for patients and caregivers, found at https://www.nhpco.org/patients-and-caregivers/resources/—Mary Helming, PhD, APRN, FNP-BC, JCN Contributing Editor
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