Medical care alone is not enough to make and keep a patient healthy. Total wellness requires an understanding of not only social determinants of health, but also how they impact the health outcomes of our patients. Examples may include financial insecurity, housing, employment, health literacy, social support, access to care, and access to food.

According to Healthy People 2020, “Social determinants of health are conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks.”

We cannot assume that how a person dresses and where they live automatically excludes them from financial burden, food insecurity, and other barriers. Due to high deductibles and co-pays, even patients who have insurance are often underinsured. Job loss can also deplete a family’s savings and force them to seek support for food and other financial assistance programs. Even when resources are available, patients often struggle with asking for help due to the significant shame and stigma that can accompany these needs. As a result, patients and their families suffer in silence.

Oncology nurses can help patients break down these feelings of stigma and shame. We can begin by understanding the sensitivity of these topics and then script our conversations to ensure they understand that they are not alone, resources are available, and we care. Nurses must be present by listening and responding with empathy.

Questions can easily be incorporated into normal conversations and prefaced with the following: “Today, even with insurance, many people find they are struggling to find food and other financial resources. You are not alone. Food is important to your health and the health of your family.” Multiple health assessments and validated tools are available for screening. Many cancer programs have integrated the National Comprehensive Cancer Network (NCCN) Distress Screening Thermometer into their practice.

 Although the tool is not perfect, it can help to identify areas of concern before they become a crisis.

Identifying patients at risk for food insecurity is equally important, especially if this is not being asked during a normal assessment. The Hunger Vital Sign

 is an excellent example. This 2-item assessment has high sensitivity and specificity, and it has been validated in households with children as well as in high-risk adults. The 2 items are as follows:

1. Within the past 12 months, we worried whether our food would run out before we got money to buy more.

2. Within the past 12 months, the food we bought just didn’t last, and we didn’t have money to get more.

Oncology nurses, are often on the front line with identifying clinical and nonclinical barriers that can impact their patient’s outcomes.

Understanding social determinants of health are important when having sensitive conversations. Screening all patients is not a guarantee, but asking questions in an empathetic manner can open up conversations and develop a longstanding relationship of trust. Patients are more likely to confide their fears when they realize they are not alone and someone truly cares.

US Office of Disease Prevention and Health Promotion. Social determinants of health. Healthy People 2020 website. 

healthypeople.gov/2020/topics-objectives/topic/social-determinants-of-health

 Published 2014. Updated June 28, 2019. Accessed June 2019.

NCCN Distress Thermometer and problem list for patients. NCCN website. 

nccn.org/patients/resources/life_with_cancer/pdf/nccn_distress_thermometer.pdf

 Published February 23, 2018. Accessed June 2019.

 Development and Validity of a 2-Item Screen to Identify Families at Risk for Food Insecurity

. 2010;126(1):e26-32. doi: 10.1542/peds.2009-3146.

Articles

Find ways to bring up these topics in patient conversations, while mitigating feelings of shame.

Navigating Sensitive Topics: From Food Security to Insurance Coverage

We once lived in a world where we believed insurance would cover any and all out-of-pocket costs. Sadly, those days are gone—especially for those with cancer, given that the cost of cancer drugs has escalated in the past 10 years, as have patients’ expected out-of-pocket costs. The cost for insurance has also escalated, with more patients facing higher premiums, higher deductibles, and higher co-pays. In 2016, Scott Ramsey, MD, and colleagues found that patients with cancer who face bankruptcy are more likely to die than patients who don’t.

 Interesting to note is that patients with prostate cancer facing bankruptcy were almost twice as likely to die as those not facing medical debt, and those with colorectal cancer facing bankruptcy were 2.5 times more likely to die.

Financial toxicity refers to the out-of-pocket expenses that patients incur during and after cancer treatment. It can affect quality of life and even prevent patients from receiving their cancer treatment.

 We know that patients often do not willingly share their economic hardship. Many will suffer in silence as they try to decide whether to pay for their medication or use the money to put food on the table for their family. Today, research continues to support the need for all members of the healthcare team to initiate a conversation with their patients. Oncology nurses are in an excellent place to start this dialogue, and an understanding of who might be at risk is critical to facilitating this conversation. Patients at high risk for financial toxicity include those who:

• Self-pay, are uninsured, or have Medicaid or Medicare without secondary insurance

• Have advanced and/or metastatic disease

• Are a member of a minority population

Equally important is helping patients understand the new terms associated with the financial cost of cancer care.

All costs not covered by an individual’s health insurance

Amount paid for each healthcare service, such as a doctor appointment or a prescription, after meeting the yearly deductible

 Percentage of costs paid for a service that health insurance covers after the deductible is paid

 Amount an individual pays for covered medical care before the health insurance plan begins to pay

 The share of cost covered by insurance that patients pay out of pocket; generally includes deductibles, coinsurance, co-payments, or similar charges; does not include premiums, balance billing amounts for non-network providers, or the cost of noncovered services

The cost of cancer care is very personal and may explain why many patients do not initiate this discussion. Many patients are reluctant to start a conversation that includes finances or cost of care. Not only is it embarrassing, but patients may also be afraid that by sharing details about financial toxicity, they may not receive the best treatment. Helping patients overcome this fear and enabling them to engage in these conversations is just as important as shared decision making for treatment planning.

Nurses should acknowledge financial toxicity and address it during patient visits. Some have found it helpful to share that many people face challenges when paying for their cancer treatment. Remind patients that the cost of cancer treatment has escalated and that reimbursement is not what it once was. Be an advocate for your patient by asking, “Are you concerned about the cost of your care?” Even if the patient responds that they aren’t, you have will have opened the door to future discussions about financial options that may be available to them should the time come. As we come together, we can help to ensure our patients no longer suffer in silence.

Ramsey SD, Bansal A, Fedorenko CR, et al. Financial insolvency as a risk factor for early mortality among patients with cancer. 

. 2016;34(9):980-986. doi: 10.1200/JCO.2015.64.6620.

Zafar SY, Abernethy AP. Financial toxicity, part I: a new name for a growing problem. 

Oncology nurses are in an ideal position to initiate a conversation about patients’ financial fears.

Nurses Should Address Financial Toxicity With Patients

Each day, oncology nurses show up to care for patients facing some of their most difficult times. Compassion and empathy are required skills that allow nurses to connect with their patients. Over time, personal relationships develop that include sadness, fear, and celebration. The ability to connect and be present both professionally and emotionally requires skills built upon experience and deeply rooted personal values. Maintaining professional and emotional boundaries is not always easy, however, and all nurses are at risk for boundary crossing and violations.

A therapeutic relationship is the gold standard of all nurse—patient relationships. It is professional, patient centered, and built on trust. According to the National Council of State Boards of Nursing, there are no definite lines of separation between underinvolvement and overinvolvement.

 It is the nurse’s responsibility to understand an imbalance of power can lead to boundary violations. Nurses can protect themselves by doing the following steps:

• Ensuring the relationship is always therapeutic

• Setting up measures to safeguard against boundary crossing, especially if there is an isolated example

• Understanding that boundaries can be compromised by patient needs, the nature of therapy, influences from the community, and the care setting

However, as nurses often find, real life does not always fit neatly into a handbook for maintaining professional boundaries. There is an emotional cost that comes with caring for our patients. At times, it can be difficult to separate a patient’s suffering from our own vulnerability. Sometimes when our emotions cloud our better judgment, we find ourselves letting our guard down and inadvertently crossing a professional or emotional boundary.

One example may be providing your personal cell phone number to a patient, for after-hours support, even though hospital policies state this is not appropriate. During moments like these, nurses need to step back and spend time understanding what is driving them to cross a boundary that could affect their career. Offering your cell phone number might seem to be in the best interest of the patient at the time, but the consequences can reverberate. Among these is confusion for the patient and caregiver. Consider these questions:

• In the event of a medical emergency, who does the patient call?

• Does your liability insurance cover you for providing patient care after hours?

• How do you document after-hours conversations with patients?

• How do you respond to calls that you may not receive due to limited cell phone coverage?

There is also the risk of your patient developing an emotional dependence that will be difficult to manage as your relationship escalates to a level that far exceeds what is considered a normal and professional relationship.

Maintaining healthy boundaries help nurses guard their hearts from being consumed with pain and suffering. It also helps ensure you will have room for the next patient who will need your care. The following are healthy tips to help protect yourself from becoming consumed by those who are suffering.

• Protect your time away from work. Be careful about picking up overtime.

• Spend time with people who build you up and who you truly care about.

• Make your passion a priority. Spend time doing what makes you feel alive and connected outside of the work environment.

• Let go of things that you can’t control.

Most importantly, always take time to remember why you chose oncology nursing for your career. This is what will ground you during your most vulnerable and difficult days.

National Council of State Boards of Nursing. A Nurses Guide to Professional Boundaries. Chicago, IL: NCSBN; 2018.

How to balance providing compassionate cancer care and maintaining professional boundaries.

Just a Call Away? The Dilemma of Providing Patients With Personal Contact Information

One of the unique aspects of oncology nursing is our ability to be present during some of the most dark times patients face. Through this, we develop relationships that lead to meaningful connections and trust. Our patients will come to us and trust us to speak the truth, as well as seek a safe place where they can share their darkest and deepest secrets and concerns.

Being present requires the ability to engage in conversations that ensure patients’ goals of care align with their priorities. This is not easy. Additional education and skills are required to master these discussions in a way that provides the desired result.

Palliative care focuses on caring for patients living with a serious illness and also supports their families. Unlike hospice care, which is given when treatment stops and usually takes place within the last 6 months of life, palliative care can start at the time of diagnosis. Both specialties address the symptoms and emotional aspects of care. Lack of access to specialty palliative care is a constant challenge for patients with cancer across the United States. Access in rural hospitals is even more challenging because of the lack of training, resources, and specialty palliative care clinicians. Although many rural health systems seek to provide elements of palliative care, including patient and symptom management and advance care planning, many local clinicians and nurses offer these services in the absence of formal training or specialty certification.

Today, many health systems struggle with providing quality end-of-life care. Thirty percent of all Medicare dollars are spent on end-of-life care.

 Often, treatment increases suffering and fails to improve the quality of life. As a result, institutions are beginning to see the benefit of incorporating palliative care earlier in the disease process, in part because of research findings that reflect this. However, they struggle with determining which model will prove to be the most sustainable.

Unfortunately, this is a common problem without easy answers. Institutions are looking for innovative models that can help ensure that patients and staff have critical resources needed to deliver quality patient care. An example of how 1 health system is addressing this challenge is seen in the Conversation Nurse Model. This program provides nurses with the training required to have serious illness discussions, as well as goals for care, and an interdisciplinary team provides hospice and palliative care consults. Initial data reflect the following cost savings benefits:

• Increase in number of palliative care consults for inpatients

• Increase in number of patients with advance directive

• Increase in hospice consults for patients in skilled nursing facilities • Decrease in readmission

• Expansion of trained staff to increase education into the community

Nurses often find themselves in a position to lead improved end-of-life care within their own institution. Often, a simple survey to physicians and staff can help identify their perception of how care is delivered and opportunities for improvement. Another example may be setting up processes so that patients are asked if they understand advance directives. This would be an opportunity to provide important education before patients and caregivers are faced with a crisis. Nurses should stress the importance of patients understanding the need to determine who will speak on their behalf if they are unable to do so.

As new initiatives are developed, it’s important to recognize the emotional energy required for difficult conversations. Finding support both inside and outside the healthcare setting is essential. Every patient relationship can affect nurses differently. Mindful meditation can help manage stress or anxiety, as can reflective journaling. Nurses should find people to talk with without judgment. At the end of the day, these patient experiences remind us about the finality of life and how precious each day is. Caring is a privilege, but it does come with a cost.

An example of an innovative model to improve end-of-life care is seen at High Point Regional Health System in North Carolina. The hospital identified the opportunity for improved care at the end of life. A team was brought together that initially included a surgeon, a chaplain, a nurse navigator, a hospice liaison, and a social worker. That led to developing an end-of-life care consult team led by the chaplain and the nurse navigator. A set of routine comfort orders was implemented for patients admitted to the hospital for pain and symptom management at the end of life, which resulted in an increase in advance directives and hospice referrals. Ultimately, the American Hospital Association recognized this work with the Circle of Life Award.

Difficult conversations require nurses to draw on their own skills and the skills of others to help patients and caregivers prepare for what is to come, especially if that means end of life. These conversations require time and rarely can be accomplished in 1 visit or encounter. Patients must be given the time to express what they want, how they want to live, and what is important to them. They need to understand that this is about having the quality of life they want and that stopping treatment does not mean stopping care. Providing guidance and a clear understanding of what hospice is and what it is not can help bring additional support. Giving families permission to have these conversations and ask questions may end up being one of the most important gifts nurses can offer.

Davis MA, Nallamothu BK, Banerjee M, Bynum JP. Identification of four unique spending patterns among older adults In the last year of life challenges standard assumptions. 

Lally K, Rochon T, Roberts N, McCutcheon Adams K. The conversation nurse model: an innovation to increase palliative care capacity. 

 2016;18(6):556-563. doi: 10.1097/NJH.0000000000000294.

Talking with patients about palliative and hospice care is not always easy, but it is important.

Oncology Nurses Must Navigate Difficult End-of-Life Discussions

Cathy is 76 years old and has been living with metastatic breast cancer for more than 7 years. Her home is 240 miles from her oncology center. Although she has relied on her adult daughter and friends to accompany her to appointments, as her disease has progressed, Cathy has had difficulty finding help with travel.

Cathy has enrolled in a phase I clinical trial, which requires more frequent trips to her oncology center for treatment. She does not have the resources to pay for a hotel. When asked about her ability to drive after treatments, she says sometimes severe fatigue causes her to pull off the road and sleep for a few hours. However, she is adamant that she is a safe driver. The oncology nurse notes that her current medication list includes oxycodone (Oxycontin), bupropion (Wellbutrin), lorazepam (Ativan), pregabalin (Lyrica), and zolpidem (Ambien).

Although the above scenario may seem extreme, nurses are often faced with similar situations when caring for their patients. What constitutes a high-risk driver? When should a patient be advised to stop driving? And how should oncology nurses approach patients and families about this sensitive issue?

Motor vehicle injuries persist as the secondleading cause of injury-related deaths in individuals over the age of 25.

 Traffic safety programs have had some success in reducing crash rates for all drivers, but the fatality rate for drivers over 65 has remained high. Unfortunately, there are no official guidelines for when to advise patients to stop driving.

Oncology nurses are in a unique position to address this problem. The conversation may be initiated by a concerned caregiver. Asking permission to speak with caregivers for additional information is important. This is a sensitive issue, so approach this discussion with empathy and compassion. Take the time to listen to the concerns of your patients and their caregivers, and help them identify realistic, safe goals. Exercise sensitivity when asking patients about how they perceive their driving habits, as they will almost always downplay any problems for fear of losing their license.

Clinical risk factors that may indicate impaired driving include decreased physical and cognitive abilities. Simple questions to screen for impairment include:

• Do you drive to the grocery store or the bank or for other day-to-day errands?

• Is your vision affected when you drive at night?

• Has anyone ever expressed concern that you may not be as safe on the road as you once were?

• Have you been involved in any accidents within the past 6 months?

Patients must understand that their safety comes first. The following are signs of a potential safety risk:

• Difficulty with remembering the difference between the gas and brake pedals

• Inability to maintain a consistent speed

• Following too closely and/or driving too slowly, which may indicate a difficulty with perception

• Not providing appropriate turn signals

• Delayed response to unexpected situations

• Minor accidents causing scrapes and dents and/or multiple fender benders

Engaging other team members in the discussion can be helpful. In some states, physicians are required to report to the Department of Motor Vehicles (DMV) patients who may be considered at risk. Physicians can often initiate the conversation with the patient, and social workers are also important resources for helping to explore alternative means of transportation.

Pharmacists can help review medication history and use of OTC drugs and anticipate drug-drug interactions. Medication classes that may impair a patient’s driving ability include anticholinergics, anticonvulsants, antidepressants, antiemetics, antihistamines, antihypertensives, antiparkinsonians, antipsychotics, benzodiazepines, muscle relaxants, narcotic analgestics, and stimulants.

IS IT IMPORTANT FOR NURSES TO REPORT AT-RISK DRIVERS?

All states have their own DMVs, so the rules vary across the country. Recommending that a patient’s license be revoked for medical reasons can often entail a difficult and time-consuming process. The physician—nurse relationship is important for ensuring that you are working as part of the team and not in isolation. In addition, DMV.org is an excellent resource for patients and families who are trying to determine driver safety.

When a safety risk is identified and a patient is deemed unable to drive, families must set up an alternative means of transportation. Uber, taxis, and friends are possible solutions. As part of the American Cancer Society’s Road to Recovery Program, volunteers donate their spare time to offering rides for patients with cancer. In addition, some communities have churches, local nonprofits, and senior centers that can assist with transportation.

If a patient’s license is revoked, nurses should discuss with caregivers and family members the impact this can have on the patient’s quality of life. Limitations on socializing with others can lead to depression, for instance. 

Caregivers need to be aware of this potential and stay in close contact with the patient’s primary care provider as well as other identified support staff. This can include a chaplain and a psychologist.

In Cathy’s case, we reached out to our social worker. A family conference was facilitated with the patient and her daughter so we could share our concerns about Cathy’s safety. Once her daughter recognized the seriousness of the situation, she made an effort to accompany her mother to all future appointments. We were able to help Cathy identify nearby affordable housing so she could avoid having to travel far on the days when treatment was long, as well as additional travel resources in her own community that she was unaware of. We feel that we achieved our goal of ensuring her safety but realize the ongoing support that will be required to ensure Cathy is still maintaining an acceptable quality of life.

1. Centers for Disease Control and Prevention. 10 leading causes of injury deaths by age group highlighting unintentional injury deaths, United States — 2017. cdc.gov/injury/images/lc-charts/leading_causes_of_death_by_age_group_unintentional_2017_1100w850h.jpg.

2. AARP. We need to talk: the difficult driving conversation. 2016. aarp.org/auto/driver-safety/info-2016/when-to-stop-driving-in-older-age.html

3. Chihuri S, Mielenz TJ, DiMaggio CJ, et al. Driving cessation and health outcomes in older adults. J Am Geriatr Soc. 2016;64(2):332-341. doi: 10.1111/jgs.13931.

How should oncology nurses navigate this sensitive discussion with patients and their families?

Jean Sellers, MSN, RN

Articles

Navigating Sensitive Topics: From Food Security to Insurance Coverage

Nurses Should Address Financial Toxicity With Patients

Just a Call Away? The Dilemma of Providing Patients With Personal Contact Information

Oncology Nurses Must Navigate Difficult End-of-Life Discussions

Should Your Patient Be Driving?