Fostering Trust With a Young Man Experiencing Homelessness and Advanced Cancer

Abstract

Persons experiencing homelessness (PEH) face countless barriers to equitable health, social, and palliative care across all settings. Brandon was a 23-year-old male, well-spoken, groomed, and polite despite difficult circumstances. He was severely abused then abandoned as a child, living in multiple foster homes until 18. With no consistent caring adult figure, he predictably fell into a chaotic lifestyle, had 3 children by different mothers, and became homeless in New York City. He presented with newly diagnosed renal cell carcinomametastatic to lung, lymph nodes, and bone. Spine and pelvic metastases caused paralyzing somatic pain that interfered with walking and sitting and prevented Brandon from performing the activities of daily living essential for his survival on the streets and safekeeping of opioids. Lack of basic social support and a history of multiple abandonments made a care plan for this young, homeless, and truly isolated man very challenging. The inpatient and outpatient interdisciplinary team members partnering with Brandon each earned his trust with time. A “safe place” opened hearts on all sides of the therapeutic relationship and led to a plan that was acceptable for both the patient and the palliative care team. Clinicians are often challenged to provide sustained and pragmatic palliative care services for PEH due to complex barriers. Continued advocacy for equitable and tailored services that ensure high-quality palliative care for PEH is critical at individual, institutional, and system levels to promote health equity and dignified care.

“We think sometimes that poverty is only being hungry, naked and homeless. The poverty of being unwanted, unloved and uncared for is the greatest poverty.”

-Mother Theresa

Introduction and Background

Persons experiencing homelessness (PEH) are inherently at-risk for poor health outcomes.^1-3 Not only is homelessness an independent risk factor of increased mortality but it is also associated with multi-morbidity and numerous barriers to health and social care services.^4-5 In the context of serious illness, myriad dimensions of suffering may be exacerbated by unstable living conditions, poor or absent caregiving supports, a history or risk of substance abuse, complexities associated with what it means to survive, and no home setting available for safe discharge.^6-8 Building trust is foundational to the relationship-based ethic of palliative care. This can be a formidable challenge when the world has been untrustworthy from the patient’s perspective.

The coronavirus disease 2019 (COVID-19) pandemic has highlighted worldwide social disparities that have detrimental outcomes for the poor, including PEH and those facing housing insecurity.^9-12 PEH are disproportionately comprised of the groups considered high-risk for COVID-19 transmission, such as older persons, those with compromised immune function, those with multiple comorbidities, and individuals from minoritized racial, ethnic, sexual, and gender identities.^13,14 COVID-19 has further complicated testing, triage, and treatment of PEH and has underscored many longstanding social challenges to continuity of care for this population. Several recommendations have been made by global palliative care organizations to support PEH during the pandemic and beyond (Table 1).¹⁵

Table 1.

Recommendations for Improving Palliative Care for Persons Experiencing Homelessness During COVID-19 and Beyond.

• Prioritize PEH for effective referral to palliative care services in hospitals, primary health care settings, and in the community.

• Integrate palliative care into public health systems that assure sensitivity to PEH through a human rights approach.

• Integrate palliative care principles for PEH into the COVID-19 respond, such as flexibility, trauma informed and person-centered care, low barrier services, and trusting relationships.

• Plan for adequate palliative care support for homeless populations and for PEH who are deteriorating or for whom acute care is not feasible.

• Provide safe accommodation for those who are unable to “isolate at home” and provide access to basic sanitary supplies for hygiene and infection prevention purposes.

• Expand substance addiction care and integrate harm reduction measure into the COVID-19 response to assist PEH who use drugs.

• Promote advance care planning for PEH where possible and identify care preferences and values in the event they become seriously ill.

• Ensure social assessments that identify and involve any form of family and facilitate connection where possible.

• Recognize grief and loss for PEH, shelter communities, and staff.

• Provide emotional support and primary palliative care training for all staff working with PEH across organizations and health and social care systems.

• Enhance chaplaincy and social work collaboration to meet a broad range of needs for PEH who may be socially isolated.

• Ensure social histories in health and social care intakes to evaluate individuals and families for economic wellbeing and identify those who may be at-risk for homelessness early.

• Provide a dignified burial or cremation for PEH to ensure respect for identified or unidentified persons in congruence with religious/cultural practices if known.

^*Adapted.¹⁵

Understanding and attending to the social factors and determinants that inform the health and illness trajectory for all patients is requisite to the provision of quality palliative care.^16,17 Researchers have shown that PEH are often dealing with serious illness and dying in unsupportive congregated living environments (e.g., hostels, shelters, etc.) without appropriately available health and social care personnel, including palliative specialists. Providing palliative care for PEH carries with it a number of unique concerns, including but not limited to:

• Infrequent and late involvement of palliative care

• Complex services requirements at the intersection of medical and social support

• High burden on hostel or shelter staff to meet medical needs along with the shortage of facilities with the expertise to provide care and services

• PEH experiences of stigma and marginalization

• Inflexibility of health systems to personalize care of the PEH;

• Uncertainty of prognosis or location of care, among others.^18-20

Palliative specialists caring for PEH may be challenged by a number of the logistics mentioned above. In addition, they may be unable to rigorously evaluate the outcomes of their interventions, such as symptom management, as well as spiritual and psychosocial support.

Case Example(Case Details have been Changed to Protect Patient Identity)

Brandon was a 23-year-old male, well-spoken, groomed, and polite despite difficult circumstances. He was severely abused then abandoned as a child, living in multiple foster throughout his teenage years. With no consistent caring adult figure, he predictably fell into a chaotic lifestyle, had 3 children by different mothers, and became a PEH in New York City (NYC).

Brandon traveled from North Carolina to NYC to be treated for newly diagnosed metastatic poorly differentiated bilateral Renal Cell Carcinoma (RCC). The patient was admitted with severe radicular back pain and for the work-up while the patient himself was apprehensive about the admission as he could lose his space in a shelter. Spinal imaging revealed multilevel multifocal osseous metastases scattered in the thoracolumbar spine and visualized sacroiliac bones. Considering his unstable social situation and severe cancer pain, the palliative care team was involved early to control his pain and collaborate with inpatient social work colleagues to start discharge planning that was complex due to the patient being homeless, having advanced disease, a poor prognosis, and no consistent social support.

Brandon’s genetic markers suggested that effective immunotherapy was available to him. Unfortunately, due to myriad consequences of homelessness, his treatment was frequently interrupted, and his cancer progressed through 3 lines of treatment. He was unable to check his vital signs at home or report his symptoms when his monthly allowance for the use of cell phone ended. Instead, he often walked into oncology clinic where he was seen jointly by his oncologist and palliative care team.

Over the next few months, he developed pulmonary, nodal, and more osseous metastases and increased size of bilateral renal tumors. Depending on where he was staying overnight, he was admitted to various local hospitals which led to inconsistent symptom management and further delays in care. Brandon received radiation therapy and spine stabilization surgery for spinal cord compression.

Although he had continued to have severe pain, his desire to be prescribed opioid analgesics varied depending on where he was staying at the time. He was more likely to agree to opioids when he stayed in a shelter that could dispense his medications to him daily. As his disease progressed and his care requirements escalated, he could only feel well when he was admitted to the hospital where he received patient-controlled intravenous opioid analgesics, around-the-clock antiemetics for intractable nausea, and consistent emotional, spiritual, and psychosocial support from the staff. He was eventually transferred to inpatient hospice for end-of-life care.

Discussion

This case examines the challenges of providing high-quality palliative care for a young patient with advanced cancer and complex social history who was also experiencing homelessness. In addition, the example of Brandon underscores the deep emotional impact on multidisciplinary providers of fostering trust with an endearing patient with no dependable advocate, and no home to discharge to. Our relationship with Brandon was unique for a number of reasons.

Brandon slowly shared pieces of his painful past and present as he established rapport with the primary and palliative care teams. It was clear he had no expectation of anything in return, as he rarely received anything good from the world. His way of interacting transferentially caused emotional reactions by many staff regarding what Brandon had lived through as a child and young adult prior to receiving a diagnosis of late-stage cancer. The staff’s sadness about Brandon’s reality caused them to want to “do as much as they could” to make it better. Nurses, doctors, and the young adult program coordinators would often go above and beyond to care for Brandon and bring thoughtful gifts to him at the bedside or make additional visits to him even if it was not clinically necessary at the time.

The support and insight of all disciplines were essential for implementing a safe and sustainable plan of care, for both Brandon and the interdisciplinary team. It was critical for the palliative social worker to bring awareness to these aspects of over involvement and prompt primary care team members with questions, such as: “Am I performing these acts for the betterment of Brandon’s cancer care, or because of feelings within myself because of what I am bearing witness to?” Posing these questions and collaborating with the primary service social worker was key to balancing staff reactions and overall care of Brandon as a person and as a patient.

The palliative care chaplain’s role enlightened the team regarding Brandon’s spiritual suffering, including early and current images of God. This self-identified “Christian” patient understandably associated God with abandonment and spoke with controlled anger (even trying to smile) about both his “God” and his parents. Brandon frequently requested the chaplain for prayer, listening, and (controlled) lamenting.

One memory shared with the chaplain more than once, was when his mother told him, “I gotta go, but no worries … Jesus is with you and you will be ok with Jesus. He will watch over you better than me!“ Brandon was taken from his mother with substance addiction issues “who didn’t want me anyways and said she don’t want kids.” Here began this little boy’s journey from home to home in the foster care system, being repeatedly rejected and “returned” by the foster parents for difficult behavior. Brandon said to the chaplain, “Mama was wrong-I didn’t need God, I needed my mama … but nobody wanted me.”

Every discipline was moved to offer empathic listening, spending time that they normally do not have the luxury of. Brandon made it clear to all he did not want pity, “I want respect,” he stated. His continual relaying of his history appeared to scream loudly: ‘I want the truth of my life to be seen .…to be believed .… And for me to be respected even so.’

As Brandon became sicker, his hospital context, which included the care team, led to an evolution of Brandon’s justified view of the world as non-caring, to an alternative perspective. Accustomed to being without enough food or shelter, and chronically living in unsafe settings, the experience of reliable, trustworthy care confused his set world view. Many dependable and responsible caregivers were daily present, food was always available to eat, and prompt medical, social, and spiritual attention to his needs were dependably at hand.

Even as physical pain increased, Brandon eventually presented a feeling of gratitude towards staff who “kept coming back”. Saying ‘thank you’ was a new and odd experience from the world he previously knew. Brandon eventually asked the chaplain to pray with him for people he worried about and added his own words of thanks for his hospital caregivers. Brandon’s “image of God” was evolving into a God who actually may “care”, as was his ability to trust after being so often betrayed throughout his life. All things seemed to point to a freedom from bitterness and despair, which ultimately did not seem to have the last word.

Time spent, expressing empathy explicitly, surrendering judgment, following-up in tangible ways on promises or plans, partnering to achieve short-term goals, owning our inability to fully comprehend his lived experience – all of these actions helped to build trust day by day and sometimes hour by hour. Brandon’s case calls palliative teams to reflect on personal biases, team structures, and institutional models that must improve to meet the individualized challenges of PEH in the context of serious illness and end of life.

Caring for a patient who is a young adult with cancer is another challenging dynamic to consider, which may be too expansive a topic to deeply explore for the purpose of this article. What was key, which was guided by Brandon’s verbalizations, was: “If you start to feel sorry for me, I will pull away. Treat me like any other patient, and you can stick around.” It was through Brandon’s lead and guidance that many providers were able to hold their emotions about his reality and get to know Brandon as any other patient. This also opened up providers to see exactly what Brandon had hoped us to see, the Brandon without the history of trauma, without the labels: Brandon in his wholeness.

Conclusion

Prior to his death, Brandon focused on legacy building with the young adult coordinators, who took his words and thoughts and crafted them into a poem for him. He had given us permission before transferring to hospice to share these words in any future forum so that they might inspire others and help interdisciplinary teams to care for PEH. We share these reflections in remembrance of Brandon and in honor of what he taught us. He wrote:

I am [Brandon].

I am a thunderstorm, with the power of a hurricane.

Because life has taken me in a lot of different directions.

I am the sad sounds of country music, even depressing at times.

I am a desert. Hot and dry in the afternoon and freezing at night.

I come from the saying, “It’s a small thing to a Giant.”

I believe, “It is what it is,” and, “You got to roll with the punches.”

Don’t let anything or anyone beat you down.

I didn’t ask for this, but I’m here.

And all the good … The head on my shoulders …

It all came from my past … From the sins of my Mom and Dad.

See, I always listen.

And I can forgive.