Cancer health disparities affect a number of populations, including racial and ethnic minorities, low socioeconomic status groups, and sexual and gender minorities. The lesbian, gay, bisexual, transgender, queer+ community (LGBTQ+) is one which faces disparities that are often unrecognized.

Identifying and acknowledging disparities helps us work together to improve access to care and treatment and reduce the cancer risks.

 Among individuals in the LGBTQ+ community there is less access to care because of a lack of inclusive health care, underrepresentation and exclusions in clinical trials, and lack of coverage for appropriate screenings. LGBTQ+ individuals often have poor access to cancer prevention screenings and high-quality cancer care. Further, LGBTQ+ individuals who receive a diagnosis of cancer often experience disparities in cancer survivorship, including poorer quality-of-life outcomes. For LGBTQ+ cancer survivors there are reports of more difficult relationships, lower satisfaction with cancer care and treatment, and poorer overall health.

Factors such as distrust in the medical team can have a huge impact on the LGBTQ+ community. Disclosure of gender identity and sexual orientation is important in order to receive appropriate services but disclosure does not always happen. These patients are less likely to share with their doctors because of discomfort or fear of doctors’ biases. Some people may have had previous experiences that were not pleasant, and patients were discriminated against or mistreated which adds an additional layer of fear in seeking care and sharing their concerns.

Communication is an important part of cancer care. Without good communication we are not able to address the needs of individuals like reducing their fears. According to the National LGBT Cancer Network, “Many LGBT cancer survivors report that their partners were not permitted in the emergency [department] with them, leaving them alone and frightened.”

In order to provide adequate screenings, appropriate information about treatment options and support resources there has to be a trusting relationship between the patients and everyone on the medical team. Lack of communication and disclosure for LGBTQ+ can limit the inclusion of partners or family in their care, which can lead to an increased risk for depression, isolation and distress.

It is important to make all individuals feel welcomed and comfortable. Things such as introducing yourself and your pronouns will help them do the same. Let LGBTQ+ individuals know that they are not alone and that you are there to assist. Ask about their preferences and utilize that information to provide them with appropriate support and resources.

 Share information about LGBTQ+ support in the community or virtually.

The cancer journey is scary and presents itself with a lot of emotional and practical obstacles. Simple things such as providing a listening ear and being empathetic to the challenges faced by the patient is enough. Validation of their feelings and understanding of their challenges and concerns is both helpful to the person and to the health care setting as it provides information about the needs of the LGBTQ+ population.

Promoting inclusion of LGBTQ+ people in the health care setting can be done in many ways including the following:

Request culturally appropriate trainings that provides training for all staff in order to be better informed and educated.

Advocate wherever appropriate for LGBTQ+ inclusion in documentation and services.

In providing services and support to LGBTQ+ patients we can all work as a team in order to address the cancer health disparities that they face. Much information is missing in regards to the LGBTQ+ cancer journey and experience mostly because they do not feel welcomed and important questions are not asked. More open dialogue is necessary within the health care team and in the patient and doctor consult so that LGBTQ+ patients have access to appropriate treatment options and after care support.

LGBTQ+ individuals are not represented properly in data and studies that are available in regard to cancer patients and they are also underrepresented in clinical trials, which can mark the difference in survivorship outcomes.

 In order to assist in providing support to those in the LGBQ+ population here is a quick short list of resources that can be shared:

The Gay and Lesbian Medical Association, Cancer in Our Lives

Trans Care BC (Supports the delivery of equitable and accessible care, surgical planning, and peer and community support for trans individuals across the province.)

Being willing to make small changes and to learn more about the LGBTQ+ community can mark the difference that will help close the disparities gap for this population. Having engaging conversations through the cancer journey along with adequate support will have an impact on how an individual with cancer copes. Striving to be welcoming, asking questions regarding preferences and social support systems such as partners and chosen family, as well as providing appropriate resources, will go a long way in providing care to an LGBTQ+ individual.

1. Winkfield KMP. Cancer does not affect all people equally: an expert Q&A on cancer disparities and health equity

 ASCO. June 30, 2022. Accessed August 3, 2022. 

2. Schabath MP. The barriers to care faced by LGBTQ people with cancer: an expert perspective

 January 21, 2021. Accessed August 3, 2022. American Society of Clinical Oncology. 

3. Olsen KP. AACR conference examines cancer disparities in the LGBTQ population

 American Association for Cancer Research. January 26, 2021. Accessed August 3, 2022. 

 National LGBT Cancer Network. Accessed August 3, 2022. 

5. O’Hara J. Promoting inclusion for LGBTQ+ people with cancer: “your stories” podcast. American Society of Clinical Oncology. September 21, 2021. Accessed August 3, 2022. 

6. Loftus EG. Examining cancer health disparities in the LGBTQ community. American Association for Cancer Research. September 22, 2019. Accessed August 3, 2022. 

Articles

Medical providers should strive to make all patients feel welcome and safe.

Addressing Disparities: Practicing Inclusion for LGBTQ+ Patients With Cancer

Patients with cancer have been affected by changes to visitor policies instituted during the COVID-19 pandemic. Prior to this time, hospital visitation policies were relaxed and rarely enforced. As a staff RN in a surgical oncology unit I routinely encountered multiple family members and friends gathered together in a patient’s room prior to the pandemic. Then, seemingly overnight, visitors started to decrease and vanish. The only exception was if an individual was actively dying in a hospice unit.

The state of Florida has recently decided to change this reality. In April 2022, the Florida Senate created 

 The goal of this legislation was to create a policy allowing visitors back into the hospital, regardless of COVID-19 vaccination. This bill is inclusive and applies to hospitals, end-of-life hospice units, and long-term care institutions.

The Florida Centers for Medicare & Medicaid Services, (CMS), had reenacted visitor policies for long-term care institutions toward the end of 2020. Despite that provision, hospitals did not have to allow visitors per CMS rules. Florida Governor Ron DeSantis has proposed a bill that will allow hospitals to bypass the federal guidelines. There are several instances where this bill applies in the hospital setting, including for example, an end-of-life scenario. The bill would also apply in a case where a patient must sign consent forms for surgery. These 2 situations are common in oncology units, where a patient’s condition can deteriorate rapidly. Not having a family member during these critical situations is not acceptable under this new bill.

Another scenario would include if an oncology patient’s nutritional requirements fall below a certain threshold. In this instance, they may require total parenteral nutrition or a tube feeding via percutaneous endoscopic gastrostomy. This bill protects the visitation rights of family members who either help feed their loved ones or provide the encouragement to eat. Many times, the RN is busy with medication administration or, in oncology units, administering blood transfusions, emptying multiple drains and colostomy bags, and the additional responsibilities fall to a caregiver.

Interaction is also vital for patients with cancer. Depression can set in quickly when a patient wakes up from surgery and is told by the surgeon that nothing could be done for them and that their cancer has metastasized. Family support is key in this setting.

In Florida, the Agency for Health Care Administration (AHCA) has a toll-free number, 1-888-775-6055 for visitors experiencing facility reluctance for visits. They can also file an online complaint to AHCA. The deadlinefor Florida hospitals, as well as hospice and long-term care facilities to post their visitor policies was May 12, 2022.

 They must be on the facility’s website clearly visible when you log in to their website. The announcement also must have visiting hours posted and any requirements to safeguard the public during visiting hours.

Many patients will be positively affected by this bill. For instance, patients in non-oncologic settings such as labor and delivery will also benefit from the presence of close visitors during this special time. Overall, I believe that Florida’s 

SB 988 will undoubtedly affect quality of life, especially for patients with cancer.

Governor DeSantis signs senator Ileana Garcia’s legislation to defend patient visitation rights. The Florida Senate. News release. April 6, 2022. Accessed July 19, 2022. https://bit.ly/3zR7LAp

Visitation rights. Agency for Healthcare Administration. Accessed July 27, 2022. 

Berg D. No patient left alone provider alert.Dade County Medical Association.May 12, 2022. Accessed July 27, 2022. https://bit.ly/3zrlJHV

The Florida Senate recently passed the No Patient Left Alone Act SB 988, which will allow visitors back into the hospital, regardless of their COVID-19 vaccination, so that no patient will wake from surgery or find themselves in hospice, without a family member by their side.

Opinion: New Visitor Act in Florida Will Improve Quality of Life for Patients in Oncology Units

Dealing with COVID-19 has been difficult for everyone. However, patients living with cancer face an even more complex battle.

As the Director of Nursing, RCCA at Hackensack Meridian 

 John Theurer Cancer Center at Hackensack University Medical Center in New Jersey and a Lymphoma Research Advanced Practice Nurse, I, like many other nursing professionals, witnessed firsthand how complicated cancer care has become in the era of COVID-19. However, I am proud of how my colleagues and I worked to provide top-notch care during this trying time.

At the John Theurer Cancer Center, our patients are always our top priority. During the pandemic, the oncology care team remained involved in the care of our patients even when they received a diagnosis of COVID-19. Although we sometimes needed to pause cancer treatment in order to effectively treat COVID-19, our team remained active in working closely with the primary medicine and infectious disease teams in order to safely and swiftly return the patient to their cancer treatment.

For patients with a diagnosis of both cancer and COVID-19, it is important to ensure that their immune system is not further compromised by cancer treatments. There are lots of factors to consider while treating these patients, such as the severity of their COVID-19 symptoms, disease status, and the types of therapy the patient is receiving. Every patient is different and every situation calls for different treatment tactics, such as withholding therapy. In some patients, pausing chemotherapies or other treatments that cause severe suppression of the immune system is not an option. 

In order to safely continue care for patients in the inpatient and outpatient settings who also tested positive to COVID-19, my team and I implemented a number of novel strategies. These included screening patients prior to visits to assess them for signs and symptoms, limiting the number of permitted visitors, and dedicating elevators and pathways specifically for patients with COVID-19 to use. In some cases, we would use telemedicine check-ups in lieu of in-person visits.

Patients with cancer were and continue to be encouraged to receive their COVID-19 vaccinations and booster shots. We also urged them to avoid large crowds, wear a mask in public, and alert the team immediately with any signs or symptoms of infections.

Any type of infection on top of a cancer diagnosis is difficult; however, COVID-19 and cancer is a complicated combination and is ever evolving as we learn more about the virus and the new therapies to treat it. Although there are general guidelines in place, our multidisciplinary team looks at each patient’s care independently to determine whether to proceed with or hold cancer directed therapy.

Moreover, there is more to cancer care than just physical treatment. Having cancer and COVID-19 at the same time can be a very scary experience and providers should acknowledge this when communicating with patients.

Patients have strong relationships with their oncology team and lean on them for advice and support throughout the process. It is important for the care team to remain actively involved with their patient. Maintaining lines of open communication is the best thing a provider can do throughout treatment.

Overcoming COVID-19 and suffering from cancer is a difficult obstacle for the patient, but these new challenges also take a toll on the care team. I have experienced lots of health care challenges in my 17 years as an oncology nurse, however nothing has compared with this. In the beginning of the pandemic, I remember feeling helpless, which goes against the very essence of why I went into nursing: to help people.

However, in these trying times, I also felt a strong sense of unity among health care workers. We all came together to work tirelessly to care for our patients, develop standard operating procedures and workflows, and develop testing and vaccines to combat the virus.

As the pandemic evolved and we learned more about COVID-19, it reignited my passion for medicine and research. From the moment I became a nurse in 2004 and started my career in oncology, I was always proud to call myself a nurse. More, now than ever, nurses and healthcare professionals have demonstrated selflessness, compassion, and a hardworking nature of their colleagues. With COVID-19, the world’s eyes have learned to see us in this light, as well.

Thanks to the efforts of my entire team at the John Theurer Cancer Center, patients with cancer and COVID-19 are able to continue their treatment with undivided support and attention. I could not be prouder of this profession and how everyone pulled together during the pandemic.

Gabriella Magarelli, MSN, ACNP-BC, AOCNP, reflects on lessons learned caring for patients with cancer and COVID-19.

An Institutional Perspective on COVID-19 and Cancer Care

In 2020, 13.8 million (10.5%) of United States (U.S.) households were food insecure.

 Black and Hispanic households, households with children, and single-parent households experience food insecurity at even higher rates.

 Food insecurity is defined by the United States Department of Agriculture (USDA) as not having enough food to meet the demands of a healthy, active lifestyle.

 People with low food security worry that their food will run out, have reduced quality or variety of food, and may have disordered eating patterns, such as going an entire day without eating due to lack of money.

 Food insecurity is experienced by millions of Americans, some of whom have cancer.

The American Cancer Society (ACS) defines a cancer survivor as “any person with a history of cancer, from the time of diagnosis through the remainder of their life.”

 There are approximately 1.9 million new cases of cancer survival in the U.S. in 2022, or about 5,250 new cases each day, with an increasing 5-year relative survival rate that has increased to 68% in 2017 from about 49% in the mid-1970s.

 There were approximately 16.9 million cancer survivors in the U.S. as of January 2019, with a projected 22.1 million cases in 2030.

 The increased survival rate is due to many factors, including early detection practices, age and stage at diagnosis, and advances in cancer treatments.

 Physician and patient attitudes, financial resources, treatment plan, and insurance status also affect survival,

In a recent nationwide survey of over 10,000 cancer survivors, 28% experienced food insecurity,

 but this prevalence was shown to be much higher (55%) in patients receiving care in a predominantly low-income, ethnically diverse oncology clinics in New York City.6 Food insecurity is significantly associated with certain types of cancer, including reproductive cancers of the cervix, ovary, and uterus,

Various factors are related to food insecurity among cancer survivors. The findings from a recent systematic review of 11 studies showed a higher prevalence of food insecurity among cancer survivors who had children, were young, non-Hispanic Black, had lower income, lower education, no health insurance coverage, and no partner.9 Researchers found that females were more likely to experience food insecurity than males at 10.7% and 5.3%, respectively, and that survivors under the age of 40 experience food insecurity at higher rates than survivors over 60 (20.7% versus 4.27%).

 In addition, income, health insurance, and partners status were related to food insecurity in cancer survivors.

Importantly, uninsured cancer survivors reported food insecurity at approximately 26.53%, compared with those who had health insurance at 7.08%.

 Food insecurity is multifaceted and has significant effects in people with cancer.

Effects of Food Insecurity in Cancer Survivors

Food insecurity is associated with adverse mental and physical outcomes, including worse overall health, diabetes, hypertension, depression, and anxiety.

 Cancer survivors without adequate food have worse quality of life and worse health outcomes than cancer survivors that have enough food to eat.

Indeed, some adverse effects of cancer and cancer treatment are also experienced by those with food insecurity, including fatigue, malnutrition, and a weakened resistance to infection.

 Demands placed upon people with cancer include prescription costs, treatments, time spent away from work, travel, and potentially more expensive dietary requirements,

 all of which can decrease the amount of money that a person has for food. In addition, a person experiencing food insecurity may not be able to adhere to their medication regimen, increasing risk for disease complications.

 In one study, 55% of patients with food insecurity did not take their medications because they were unable to afford them, compared to 12% of their peers that were food-secure.

Current Interventions and Recommendations

Memorial Sloan Kettering Cancer Center serves as a model for addressing food insecurity during cancer treatment. The Food to Overcome Outcome Disparities (FOOD) project combines food pantries at the cancer treatment centers to provide food items tailored to patients with cancer and food insecurity, especially immigrants and other medically underserved populations.

 Enrollment in public health insurance plans may also help to curb out-of-pocket expenses

 that can be utilized for food. Some practices have emergency relief bags of non-perishable food for patients in need or a “give and take table” with items that people can take without judgment or proof of need, as well as healthy snacks in the waiting area.

Food insecurity affects cancer outcomes, and screening has been described as a “missing piece” in managing cancer.

Universal screening for food insecurity in cancer survivors (such as the validated two-item Hunger SignTM16

Education about nutritious, cost-effective food options

Discussion of ability to purchase food, especially with sudden increases in treatment costs

Subsequent referral to food resources as necessary

Referral for assistance with applying for supplemental nutrition programs

Placement of healthy snacks in a waiting area, such as yogurt or cheese sticks

Food insecurity negatively affects cancer outcomes; therefore, it is imperative that healthcare providers recognize and respond to food insecurity in people with cancer.

Coleman-Jensen A, Rabbitt M, Gregory C,Singh A. Household food security in the United States in 2020. 2021. Accessed July 21, 2022. 

Definitions of food security. United States Department of Agriculture Economic Research Service (USDA ERS). April 22, 2022. Accessed July 21, 2022. 

Cancer treatment & survivorship facts & figures 2019-2021. American Cancer Society (ACS). (2019). Accessed July 21, 2022. 

Siegel RL, Miller KD, Fuchs HE, Jemal A. Cancer statistics, 2022. 

Charkhchi P, Fazeli Dehkordy S, Carlos RC. Housing and food insecurity, care access, and health status among the chronically ill: an analysis of the behavioral risk factor surveillance system. 

https://doi.org/10.1007/s11606-017-4255-z

Gany F, Lee T, Ramirez J, Massie D, Moran A, Crist M, et al. Do our patients have enough to eat?: Food insecurity among urban low-income cancer patients. 

Trego, M. L., Baba, Z. M., DiSantis, K. I., & Longacre, M. L. Food insecurity among adult cancer survivors in the United States. 

https://doi.org/10.1007/s11764-019-00783-9

Berger MH, Lin HW,Bhattacharyya N. A national evaluation of food insecurity in a head and neck cancer population. 

Coughlin, SC. Food insecurity among cancer patients: A systematic review. 

2021;8(1): 41-45. doi:10.15436/2377-0619.21.3821

Gundersen C,Ziliak JP. Food insecurity and health outcomes. 

https://doi.org/10.1377/hlthaff.2015.0645

Paolantonio L, Kim SY, Ramirez J, et al. Food purchasing behavior of food insecure cancer patients receiving supplemental food vouchers. 

https://doi.org/10.1007/s00520-019-05183-4

Patel KG, Borno HT,Seligman HK. Food insecurity screening: A missing piece in cancer management. 

https://doi.org/https://doi.org/10.1002/cncr.32291

Weisberg, TF. Improving cancer care by addressing food insecurity. 

https://doi.org/10.1080/10463356.2020.1771130

Food to Overcome Outcome Disparities (FOOD). Memorial Sloan Kettering Cancer Center. 2022. Accessed July 21, 2022. 

Berkowitz SA, Terranova J, Randall L, Cranston K, Waters DB, Hsu J. Association Between Receipt of a Medically Tailored Meal Program and Health Care Use. 

https://doi.org/10.1001/jamainternmed.2019.0198

Hager ER, Quigg AM, Black MM, et al. Development and validity of a 2-item screen to identify families at risk for food insecurity. 

Recognizing and Responding to Food Insecurity in Individuals with Cancer

Receiving a cancer diagnosis is less common for adolescents or young adult (AYA) compared with young children or older adults. AYA patients often report that when they look around the waiting room at their treatment center, or even in their local patient support group, they tend to see patients either half or double their age. This experience can result in feelings of isolation, anxiety, and depression.

COVID-19 quarantine mandates exacerbated these emotions by forcing AYA patients, an already underrepresented population within the cancer community, to physically isolate, cutting them off from the few resources that were available to them. This lack of peer support resulted in many AYAs relying on alternative ways to connect with one another, such as social media.

In the past decade, there has been a significant rise in the use of social media. Apps like Facebook, Instagram, and TikTok, have continued to garner attention over the years, but over the course of pandemic, these platforms became even more important. Many individuals turned to these platforms to stay connected when they could not physically see family and friends. Social media apps proved to be a place of community for many— particularly for AYA patients navigating a cancer diagnosis.

A recent study completed by Memorial Sloan Kettering Cancer Center set out to identify the primary needs unique to AYAs throughout their cancer care experience. The participants of the study were between the ages of 15 and 39 and had been treated in either MSKCC’s medical or pediatric oncology unit. The results of the study revealed that the most common theme amongst the participants was the feeling of social isolation and the desire to connect with peers throughout the course of their care.

 A participant recounted how a friend, who had undergone leukemia treatment in her twenties, was surprised to hear someone else her age was similarly diagnosed. Her experience had felt so isolating. ‘You are the only other person I’ve ever met who is my age who has gone through something like this,’ she had said. Unfortunately, this experience is incredibly common. There are very few treatment centers that offer resources, groups, or programs dedicated to AYA patients. Furthermore, at the time of a cancer diagnosis, AYA patients are typically at the point in their life cycle in which they are completing their education, becoming independent, engaging in self-discovery, and starting a career or a family of their own. It is difficult to navigate these milestones under normal circumstances—when these changes are combined with the challenges of a cancer diagnosis, the result is a unique experience that can only be understood by other AYA patients in this position.

Social media created a platform for AYAs navigating these specific challenges to share their experiences, emotions and perspectives in a way that hasn’t been done before. Users are given the opportunity to disclose their diagnosis story, their experiences with healthcare, side effects of treatment, survivorship, confronting their mortality and many more topics. Most importantly, by using hashtags such as #Cancer or #AYACancer on Twitter or #Cancertok on TikTok, AYA patients are able to attract other users that these hashtags might apply to. As an AYA cancer patient, finding someone on social media that is going through something similar can significantly reduce feelings of isolation and reiterate that they are not alone.

Kasey Altman, a 26-year-old that was diagnosed with Stage 4 Rhapdomyosarcoma in 2020, has accumulated 58.3K followers on TikTok since she decided to share her story. She has gained her following by posting candidly about her metastatic diagnosis, raising awareness about the unique challenges associated with AYA cancer, and engaging in advocacy efforts. Her posts highlight the ups and downs of treatment, managing side effects, and self-care tips for those that are newly diagnosed. When asked about how social media has impacted the AYA cancer community, Kasey stated, “My main thoughts are centered on how excruciating it is to suffer in silence. TikTok makes it less lonely. It's a community filled with fiercely loyal followers and people who seem to genuinely care about the well-being of others.” This kind of support, empathy and level of understanding is crucial to healthy coping.

In another study, the use of social media was explored in the advanced cancer experiences among AYA patients. It was determined that digital technologies have been used as a primary means of support. Participants of the study, ages 14-25, indicated that social media and the use of video games allowed them to meet others who are facing similar challenges. It also allowed for them to stay connected with friends who they might not be able to see in person as a result of treatment.

 These types of connections are integral, especially for individuals that might be immunocompromised. Many AYAs receive their treatment in-patient, or even have to stay in the hospital for weeks at a time if they are recovering from a procedure like a stem cell transplant. AYAs also need the same access to support after completing treatment. A common misconception is that once treatment ends, life picks back up as normal. However, that is far from the truth. Adjusting to post treatment is actually when the peer connection is most important.

Julie Kramer, a 31-year-old that was diagnosed with stage 4 Synovial Sarcoma in 2014, stated, “Instagram became a huge resource for me during, but mainly after, cancer to find fellow AYA patients who not only had the same cancer, but more importantly related to such similar struggles as I did and currently do. I cannot express how helpful it is to my mental health and well-being having the online cancer community as an outlet to meet, engage and vent to fellow patients and survivors.” Having access to social media creates a pathway to connection, even if patients are physically alone while in treatment or are navigating post treatment.

Social media and public disclosure are not for everyone and that is also okay. Many AYAs report that social media can actually increase feelings of isolation and sadness when they see posts from healthy peers going about their day to day lives. It is essential to encourage patients to check-in with themselves prior to engaging in social media activity to ensure that it is the right source of support and connection for them. It might also be helpful for patients to set boundaries around their social media use to ensure it is used appropriately and productively. If there are in-person or virtual AYA specific groups or programs offered at one’s treatment center, it can be helpful to supplement both sources of support.

If an AYA patient you know is in need of support, please call CancerCare’s HOPEline to speak with an oncology social worker at (800) 813-4673. Cancer

 offers free emotional support services, limited financial assistance, case management, educational programs and workshops for individuals impacted by cancer, but particularly for AYA patients.

Atkinson T, Avutu V, Barnett M, Glade Bender J, Lynch K, Tap W, Vera J. Psychosocial needs and preferences for care among adolescent and young adult cancer patients (ages 15-39): a qualitative study. 

Barton K, Frazier J, Rosenberg A, Steineck A, Walsh C. Seeking virtual support: social media in the advanced cancer experience among adolescents and young adults. 

https://doi.org/10.1016/j.jpainsymman.2021.01.102

The rise of social media platforms has helped foster a community for adolescent and young adult patients with cancer.

How Social Media Helps AYA Patients With Cancer Find Support

My sister was born with heart disease. When 6-year-old Jean died, I was almost 5 years old.

Being thin helped keep her alive. The less she weighed the less work her heart had to do.

In my long career as a social worker, I have found myself in demanding settings. For the past 5 years I have worked with patients with lung cancer. Often my patients required needs such as home hydration, oxygen, and hospice–all of which required an immediate response. Usually, I scarfed down pizza, chips, or whatever was at hand. Working from home during the COVID-19 pandemic allowed me to take the time to cook and eat well – which is important for people with lung cancer. It also reminded me of Jean, and how her illness and death influenced my decision to pursue social work as a career and my love of cooking as a hobby. Every working hour challenges me to find supportive solutions for clients. Here is a glimpse into the life. 

My husband, Agustin, brings me coffee in bed and a second cup to assure I get up. He likes to talk and tells me about his day as he cleans the kitchen, sweeps all the floors, cleans the litter, feeds our cat, takes out the garbage, pays the bills. He likes to laugh and is opinionated. If I tell him I disagree with him he replies with, “Well I agree with me!” He doses out laughter and leaves to work at 5:00 am while I head to the kitchen to bake a crusty no-knead bread found on the package of King Arthur’s unbleached flour.

 I call Cindy, a 68-year-old lawyer and single mother of her 32-year-old son, to discuss end-of-life choices. Cindy had worked in the NYC courts near Ground Zero, and I am guiding her son as he files a claim with the 9/11 fund. Cindy’s biggest regret in dying is not being present to see her son’s life unfold, but rather than dwell in lament, she chooses to meticulously prepare. She has found an apartment for him in her building so he will be nearby and safe. She has finalized her will, documents, instructions, and passwords. She tells me how facing her own death brings up memories of her teenage friend who was 1 of the 4 students who was fatally shot at Kent State.

I wonder if this experience influenced her choice to become a lawyer the way my sister’s death influenced me.

 I call Marie, a 46-year-old, recently diagnosed, mother of 2. Her oncologist thinks she needs a psychiatrist and anti-anxiety medications. I have never met Marie, but I know she is an NYU oncology nurse, a colleague, and a patient. Her diagnosis reminds me that anything can happen to anyone. I ask her about her sleeplessness, panic attacks, past psychiatric history, and if she is suicidal. Marie explains that she had a few bad days but has bounced back. She feels no need for psychiatry or medications though she might consider psychotherapy in the future. She credits her oncologist and her family for bolstering her resilience; both her mother and aunt are nurses. I explain that her resilience is an inner resource, sometimes referred to as a “muscle” that can be strengthened with use.

I ask how she is managing financially and at work. She is on disability but hopes to return to nursing. “I can review charts,” she muses, “but I am best hands-on. Maybe I can help by telephone. After all I have the perspective of an oncology patient and nurse.” I am glad that Marie said “patient” before “nurse,” as her job now is to be a patient. Careful not to treat her differently than other patients, I let her know that support groups, and massage and acupuncture services are available, and I give her my contacts.

 I set up a virtual meeting to speak with the social work intern slated to start field placement in the fall. Interns do important work. For 3 years I focused my interns on building a support network for caregivers—now a vibrant and valued support group facilitated by a colleague. With lunch on my mind, I dump split green peas in a pot with water, boil them for 2 minutes, and set aside.

Back at my desk with headphones on, I welcome the intern as she appears on the screen. I describe 2 programs to be developed. First, a virtual memorial for families to honor their loved ones, our patients, who died. Prior to the pandemic, the program was live and included a harpist. The plan is to rework this tribute into a Zoom format. The second program is aimed at identifying and distilling the needs of younger people, often women, with lung cancer, a growing demographic.


I don’t want the student to think lung cancer has only dire outcomes. I explain that though death often occurs, immune and targeted therapy have yielded gains in longevity and hope abounds. The lung cancer support group she will facilitate includes a college professor, an artist, and a dancer—9, 10 and 11 years after a stage IV diagnosis.

 Edna, a 43-year-old, Orthodox Jewish, mother of 7, arrives at the clinic by ambulance. She refuses hospice; her husband explains that everyone they knew who had hospice had a dire outcome and that there aren’t any good hospices in their New Jersey township. I explain that hospice does not hasten death but helps an individual live as long as they can as well as they can. Studies show that patients with lung cancer on hospice may have 4 months added to their lives. I call local hospices to assess their potential, but since she prefers not to enroll, I begin the herculean task of arranging end-of-life care in her home with her doctor: home IV fluids, a visiting nurse, caregivers, Foley catheter, a hospital bed, morphine, and oxygen. Hospice would have been the easy way, but this is not about the easy way, it is about the patient’s way.

Her oncologist, Dr. Chachoua, like a conductor, orchestrates the timing of multiple home treatments while nurses, respiratory therapists, pharmacists, and home care workers text and call him night and day. Family have been unable to visit their loved ones in the hospital due to COVID-19 restrictions making her care at home a treasure.

The oncologists’ hard work allows many patients to live and prosper. But, despite their best efforts, sometimes patients fall like combat soldiers, one after another. We turn to each other for help coping with what at times feels like insurmountable loss. Prior to the pandemic, Dr. Rosenthal, the chief psychiatrist, and I co-facilitated support groups for the oncologists, nurse practitioners and infusion nurses to help process the many deaths and difficulties they face. We could not keep it up during COVID, when it was needed most.

During the Lung Cancer Research Foundation’s awareness walk, staff, patients, caregivers and families of deceased patients mingled as we walked over the Brooklyn Bridge and back. As health care professionals, we develop close bonds not just with those undergoing treatment but with the caregivers. We have a common mission: to keep the patient well. When a patient dies, not only is the patient gone but the caregiver is gone, too. An awareness walk for lung cancer research is an opportunity to keep in touch with families who remain important to us.

 I keep thinking about how to help Jenny, a lonely octogenarian and retired professor, who suffers with progressive disease and cognitive decline. After her doctor recommended hospice, we talked about her life, death, fears, and regrets. She acknowledged that she suffers from paranoia and hoarding, behaviors that have distanced her friends, family and loved ones. Early in the pandemic, I presented a workshop about coping with loneliness as part of the hospital’s Community Outreach program. The depth of damage loneliness can do to a person’s physical and emotional health is enormous. COVID-19 and cancer both increase a person’s risk of becoming lonely—as does hoarding.

Jenny was such a fashionable dresser and so intelligent and so kind that I never suspected hoarding behavior. Her cognitive decline is difficult to detect in conversation but noticeable in her procrastination. She has money to hire help and the contacts of vendors to repair, clean, and organize her home, and her landlord is eager to help, yet she can’t act. I mull over making an Adult Protective Services (APS) referral. APS is a government program designed to protect the elderly from abusers as well as from themselves if they are putting themselves at risk. Hoarding and being unable to fix her apartment and accept hospice all put her health and life at risk. Plus, she could use help managing her money.

I try to determine if involving APS is the best move. Though APS can be called without a client’s permission, given Jenny’s paranoia, I want her to agree. Jenny has always put me first when we speak, asking how I feel and thanking me for helping her. I have never been able to implement anything to help her. I listen and offer encouragement, but I do not feel we are gaining on the goal to arrange for a hospice referral.

I feel a sense of urgency. I don’t want her to be alone without help or die without pain control.

 It is important to include nature and the outdoors into my day for physical and mental health. I know this because a few years ago I had a heart attack. 

Overwork, eating poorly, and lack of exercise is a risk of this work and I worry about my colleagues who don’t put themselves first. I have a psychologist who specializes in physician burnout on speed-dial. For lunch I pack a sandwich and head to Central Park. I watch roller skaters dance to house music. Salsa dancing is in full swing at the Bethesda fountain. I come to a bench with a former support group member’s name etched on it. A musician once shared with the support group the importance of drumming—how the tap-tap tapping was much like listening to a heartbeat. 

I sit and remember Sigbritt, an octogenarian Swedish immigrant who spoke 6 languages and had raised a family. She had lived well for almost 10 years with a diagnosis of stage IV lung cancer. Sigbritt was blind and used a cane. Neil, a younger support group member, would jump up to help her when she entered the room. I told him privately, “Thank you Neil, for helping Sigbritt with her blindness.” Neil incredulously responded, “She’s blind?” He was just being gentlemanly.

I consider my career choice and what it has meant. The goal has been to make people’s experience with cancer as good as can be. A patient’s wife wept as she told me how his oncologist, Dr. Sabari, fixed her husband’s hair, sat beside him and whispered, “You are a good man. Your life was important.” Dr. Sabari’s expert medical care wrapped in compassion gave this family solace and courage. When my own life is ending, I will draw upon the strength, humility and resourcefulness I have witnessed in colleagues, patients and families to guide me. Yet, if it weren’t for the early loss of my sister, I might have never been motivated to be there for others at the end of their lives.

An oncology social worker reflects on a day in the life and how the memory of her sister motivates her to tackle her work.

Recipe For Disaster

The United States has an extensive history of immigration. However, several studies have demonstrated that people face health disparities because of their immigration status.

According to the center of immigration studies, in November of 2021, the immigrant population is made up of 46.2 million documented and undocumented individuals. This represents 14.2 percent of the population in the United States.

Undocumented immigrants are foreign-born individuals who have migrated to the United States without authorization.

Contrary to negative connotations, political restrictions, and immigration policies, approximately 50% to 70% of the undocumented immigrant population pay federal and states taxes. Despite their contributions to the American economy, the undocumented population continues to face discriminatory policies.

 These disparities are particularly felt by those who have been diagnosed with cancer and their loved ones. These existing policies affect undocumented cancer patients emotionally, financially, physically, and socially.

Disparities Within the Health Care System

The Affordable Care Act is a federally funded initiative implemented in 2014 to allow more affordable healthcare options for millions of Americans. However, this initiative excludes many the undocumented population.

Research shows that those who are undocumented are rarely able to attain full insurance coverage, whether it is private insurance from the marketplace or Medicaid. Multiple states have expanded Medicaid policies to cover service gaps for undocumented individuals (Emergency Medical Treatment and Active Labor Act), but this extended policy varies by state and solely covers emergency services. This affects individuals who are diagnosed with cancer for any type of treatment. Individuals who seek emergency services due to a diagnosis may receive emergency medical attention; however, it typically does not cover cancer treatment costs.

Thus, those who are undocumented and uninsured usually do not seek medical assistance, or delay seeking care, for several reasons. Health insurance is closely linked to the number of times individuals seek medical assistance: this includes general check-ups, annual physicals, and cancer screenings.3 Cancer screenings are typically delayed unless or until individuals experience extreme discomfort or a medical emergency. Undocumented individuals are likely to live with pain and discomfort in order to avoid receiving high medical bills. They may avoid seeking medical attention or put off annual physical exams to avoid fees and copayments.

A delayed cancer diagnosis affects the prognosis and types of treatments that are available to patients. The quality of treatment is also compromised, as undocumented populations are more likely to be offered a less effective, yet more affordable, treatment as opposed to the best available treatment that is more expensive, that is linked to a higher survival rate.

Undocumented individuals who are facing a cancer diagnosis are at higher risk of struggling with the financial burden of cancer treatment. Due to the nature of diagnosis and treatment, most patients with cancer who are undocumented are unable to work, resulting in ineligibility to receive federally funded benefits such as extended family leave, paid time off savings, paid sick days, short-term and long-term disability.

Furthermore, undocumented patients with cancer face traumatic experiences that cause stress levels to elevate—affecting their mental health. Some of these traumatic experiences include discrimination because of immigration status, stigma related to status, language barriers, and racism. These traumatic experiences also affect the likelihood of patients seeking medical assistance for their cancer treatment or diagnosis.

Often undocumented individuals who may have a cancer diagnosis delay seeking medical assistance because of fear of deportation. It can be difficult for undocumented individuals to seek support as oftentimes they are the ones supporting their families­—financially and emotionally.

These experiences can be isolating for patients and are correlated to depression, anxiety, posttraumatic stress disorder, and other mental health conditions. Higher stress and mental health conditions cause a direct impact on patients' physical health as well as response to treatment and survivorship.

Helping Undocumented Patients Navigate Health Care Disparities and Impacts

Although there are plenty of challenges and barriers that prevent undocumented cancer patients from receiving adequate treatment, support, and information, there are a plethora of ways to help this population navigate challenges.

Cultural humility is defined as “a lifelong process of self-reflection and self-critique whereby the individual not only learns about another's culture, but one starts with an examination of their own beliefs and cultural identities.”

 By reflecting one's own core cultural identity and privileges one may hold, it allows the health care worker to empathize with structural and emotional challenges their patients may face. It also assists professionals with the emotional capacity of advocating for patients or assisting them with the tools for advocating for themselves.

Faith and spirituality are also helpful factors at the micro-level that assist with coping skills and how individuals react to stressors and mental health challenges. Being connected with an outside force (whether it is religion or spirituality) assists patients to externalize traumatic experiences and it can create a sense of hope and belonging.

Health and policy literacy is an important component in assisting this population. Most undocumented cancer patients are unaware of policies that could assist them. As a professional, being informed of local and federal laws can help inform undocumented cancer patients what they are eligible for. Since there are very limited direct federal programs that assist financially, non-profit organizations and Catholic charities are the main source of financial and emotional support for patients. These organizations do not include immigration status as a form of eligibility to receive financial and emotional support.

Although there are a lot of factors and layers that affect this population, creating a safe space and providing appropriate empathetic care can create an impact on a patient’s perception of hope and motivation.

Olazagasti, C., & Duma, N. (2020). “Cancer Care for All? Tales of Caring for Undocumented Patients with Cancer.” 

Camarota SA, Zeigleron K. Immigrant population hits record 46.2 million in November 2021. CIS.org. November, 2021. Accessed February 8, 2022, from 

Beck TL, Le TK, Henry-Okafor Q, Shah MK. Medical care for undocumented immigrants: national and international issues. 

. 2019;4(1):33-45. doi:10.1016/j.cpha.2018.08.002

Tervalon M, Murray-Garcia J. “Cultural humility versus cultural competence: A critical distinction in defining physician training outcomes in multicultural education.” 

 1998;9(2):117–125. doi:10.1353/hpu.2010.0233

Undocumented patients with cancer face additional barriers to care. 

Challenges and Impacts Faced by Undocumented Cancer Patients in the Health Care System

Careers in nursing should be tailored to match your interests, career goals, and unique life circumstances. The nursing landscape allows significant room to advance and hone your skills, increase your earning power, and specialize in specific areas that are of the most interest to you.

Pursuing a role as a Nurse Practitioner (NP) can therefore be a strategic move. Although becoming an NP can take a bit of foresight and planning, this article will flesh out several strategic tips for achieving a Nurse Practitioner certification and advancing your nursing career.

What is the Difference Between an MSN and a Nurse Practitioner?

The 2 nursing career types in question—MSNs and NPs—are both achieved through postgraduate education. However, the 2 roles differ functionally from each other. As a rule of thumb, earning a Master of Science in Nursing (MSN) degree generally prepares an individual for roles that are often administrative, managerial, or leadership oriented.

MSNs often take positions such as Nurse Administrators, Clinical Nurse Leaders, or Nurse Executives. Alternatively, NPs receive training that is geared towards advanced technical care provision. NP roles are often more “hands-on” and integrally focused on patient care. The 2 roles lend themselves to different skill sets and interests. Thus, if you are currently practicing as an MSN and are interested in making a career change, your career goals might be better met by pursuing an NP role.

Five Tips for Pursuing Nurse Practitionership

Gaining a proactive understanding of the specifics of different nursing education options will expedite your career advancement and help you land in the role that best fits your strengths. Nursing educational pathways are complex and multifaceted. The more you know about yourself, what you’re looking for, and what various nursing positions offer, the better you’ll be able to position yourself and decide what path is optimal for you. Planning ahead and being proactive in your learning will benefit you as you consider becoming an NP.

2. It’s Never Too Late to Look for Scholarships

Strategic tips for achieving a Nurse Practitioner certification and advancing your nursing career.

Contributors