Challenges of Providing Palliative and End-of-Life Care to Refugee Claimants in Canada: A Case Report

Introduction

The United Nations (UN) defines refugees as people requiring protection due to fear of persecution. ¹ According to the United Nations High Commissioner for Refugees (UNHCR) Global Trends report, in 2018, Canada admitted the largest number of resettled refugees (28,100 refugees). ¹ Health care for this population in Canada is provided through the Interim Federal Health Program (IFHP), which was created in 1957 to provide medical and social services to refugees, refugee claimants, and their families. ²

Refugees are accepted to Canada either as resettled refugees or as refugee claimants. ² Resettled refugees are screened and selected overseas and gain permanent residency before coming to Canada. ²

Refugee claimants (also known as asylum seekers) are individuals who arrive in Canada independently and thereafter apply for refugee status. ² They must wait for a hearing before an independent board to determine whether they meet the legal criteria to be resettled refugees. ² As of April 2019, the average waiting period for claims is ∼21 months. ³ For both resettled refugees and refugee claimants, medical and social services are covered through IFHP until they are able to obtain provincial health coverage, or for refugee claimants, if their claim is rejected, they have to leave Canada. ²

Typically, refugees move from low- and middle-income countries to Canada. ⁴ With a high rate of chronic health issues in these countries, refugees are noted to have higher medical needs among Canadian residents. ⁴ For example, Reddit et al. reported higher abnormal Pap test results among new female refugees in Toronto, Ontario, compared with the general Canadian population (11% vs. 5%). ⁴ This constitutes a higher risk of cervical cancer among female refugees. ⁴ Also, due to resettlement challenges, refugees develop increased rates of chronic health issues after moving to Canada. ⁴ Owing to financial challenges and changes in dietary habits, the incidence and prevalence of various diseases, such as hypertension and diabetes, become higher among new refugees. ⁴

In addition, there is a significant higher prevalence of infectious disease among new refugees compared with the general Canadian population, with increased morbidity and mortality rates, specifically with HIV and chronic Hepatitis B. ⁵ Reddit et al. reported a higher prevalence of HIV infection among refugees (2%) compared with the general Canadian population (0.2%). ⁵ The majority of HIV positive cases in this study (93%) were of African origin. ⁵ Refugees in Canada also suffer from mental health problems, with reported high levels of distress, post-traumatic stress disorder, and depression, including postpartum depression among female refugees. ⁶

Refugees generally face several barriers accessing health care in Canada. These barriers are mainly related to language barrier, lack of culturally competent care, and unfamiliarity with the available health care services. But even for refugees who are aware of the Canadian health care, they may not be comfortable navigating the system due to financial challenges such as the cost of transportation, or the unavailability of services through their limited health care coverage. ⁷

Given all the aforementioned health-related challenges faced by refugees, there is a definite need to provide comprehensive medical care that includes palliative and end-of-life care for the refugee population.

Nigeria, as an example, is a country that lies on the west coast of Africa. For the past few years, there has been an increasing number of Nigerians applying as asylum seekers. ⁸ According to UNHCR, 84,210 Nigerians submitted asylum claims on 2019. ⁸ Canada has been one of the most favorable destination countries, receiving 1532 claims on 2018 and 3816 claims on 2019. ⁸

Case Description

A 31-year-old male refugee claimant from West Africa presented to a Toronto, Ontario, emergency department with abdominal pain and fatigue. He did not have history of any preexisting health conditions. A complete blood count revealed leukocytosis, and an abdominal ultrasound reported splenomegaly and hepatic lesions. Given these findings, he underwent splenic and bone marrow biopsies that revealed splenic angiosarcoma. He was subsequently admitted to a tertiary cancer center's medical oncology inpatient ward for further investigations and treatment.

Given the metastatic state of his cancer, his cancer was deemed incurable and associated with an estimated prognosis of <12 months. The patient was started on palliative chemotherapy with doxorubicin. Unfortunately, after three cycles, his cancer radiologically progressed, and he was switched to weekly gemcitabine.

He initially suffered severe pain, insomnia, and depression. Therefore, inpatient palliative care was consulted for symptom management. He was started on oral hydromorphone without benefit. Owing to suspicion of poor gastrointestinal absorption of the oral formulation, he was changed to subcutaneous hydromorphone and this resulted in improved pain control. However, his pain required increasingly higher doses and frequent breakthrough doses, resulting in the initiation of a continuous subcutaneous hydromorphone ambulatory infusion pump. After developing drowsiness, the patient was rotated to a continuous subcutaneous morphine ambulatory infusion pump. Psychiatry and social work were also consulted to manage his mood and support him in his social circumstances.

Regarding his social situation, the patient was born and raised in Nigeria, a country in West Africa. He left his siblings in Nigeria and traveled to Canada, seeking a better life. He applied to be a refugee claimant only two months before presenting to hospital. The patient did not want to discuss with the medical teams why he decided to seek asylum. In Toronto, he lived in a shelter while looking for work. He had no family in Canada and only one friend, another refugee whom he met in the shelter.

A primary role of the palliative care team was to support the medical oncology team in their efforts to establish a discharge plan for the patient. The social worker involved in his care was successful in securing publicly funded housing but, due to his medical condition, the patient required home-based nursing and personal care. The patient needed continuous follow-up and adjustment of his pain medications, which is provided by home care nursing. Also, due to medication-induced drowsiness and being on relatively high opioid doses, proper home safety assessment by occupational therapy team with the help of a home visiting personal support worker were mandatory to ensure the patient's safety.

Home care in Ontario is coordinated and provided by Local Health Integration Networks (LHINs). As a refugee claimant, the patient's medical insurance was through the IFHP and not through the Ontario Health Insurance Plan (OHIP). As LHINs do not coordinate or provide care for patients without OHIP, he was ineligible for home care. Consequently, discharge to the community without the necessary services was not deemed a safe option.

Having no private residence, alternative options considered included discharge to a shelter, a nursing home, or a hospice. Shelter policies in Toronto stipulated that residents had to leave daily from 8 am to 4 pm. Given his illness, this option was not feasible. Nursing homes advised that the patient was not a candidate due to his specialized pain management needs. Finally, hospices in Ontario are funded through OHIP, and only accept cancer patients who do not receive chemotherapy anymore. Given our patient's lack of OHIP coverage, plus his active goals of care, being under chemotherapy treatment at that time, he was not eligible for hospice admission.

His social worker applied to short-term health care units offering care for homeless and under-housed people in Toronto. These units can admit patients and provide the needed medical care while patients continue to receive active cancer treatment in their primary cancer center outpatient departments. However, with only 18 beds available in the city, the wait time was long and the patient remained continuously admitted in acute care for ∼11 months before transfer. He stayed in this short-term unit for approximately five months, while his social worker tried to get him into a sponsored housing program.

Owing to cancer progression, his general condition continued to deteriorate. He was transferred to another hospital for respite care, where he passed away shortly after. Luckily, his family was able to virtually communicate with him before his death. Owing to his financial constraints, his body was not sent back to his home country, and was buried in Canada.

This report describes a young patient's case who spent the last 18 months of his life, from diagnosis till end of life, inside a health care facility in Canada.

Discussion

The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering.” ⁹ Palliative care includes physical and psychological symptom management, spiritual care, in-depth discussions about goals of care, and advance care planning. ¹⁰ Palliative care can be delivered in hospital inpatient units, outpatient clinics, nursing homes, hospices, and at home. ⁹

Globally, millions of patients suffer from life-limiting illnesses, such as cancer, organ failure, and neurodegenerative conditions. ¹¹ These patients and their families experience substantial medical and financial challenges. ¹¹ Patients with advanced illnesses typically suffer from multiple symptoms, which can make symptom management complex and challenging. ¹⁰ For example, a systematic review reported pain in 35–96% of cancer patients, fatigue among 32–90%, and anorexia among 30–92%.^10,12 This high symptom burden is no less among refugee claimants with life-threatening illnesses. ¹³ In addition, recent immigrants to Canada, including refugees, are more susceptible to aggressive care at end of life and to die in intensive care units (ICUs), compared with other Canadians residents. ¹⁴

Palliative care, through its commitment to promoting illness understanding and advance care planning, is well positioned to support refugees and their families through life-threatening illness. Palliative care is known to provide better symptom management and help relieve the patients' suffering.

For example, Hanson et al. proved that palliative care was associated with significant reduction in symptom scores. ¹⁵ Research demonstrates that early introduction of palliative care can also reduce aggressive measures at end of life, including chemotherapy given during the last 14 days of life, admission to ICUs, repeated emergency room visits, and hospital admissions during the last 30 days of life. ¹⁶

In addition, palliative care improves the quality and reduces the cost of medical care. For example, patients admitted in palliative care units cost 38% less than those admitted to acute care inpatient units. ¹⁷ Similarly, in an American study, home-based palliative care helped reduce medical costs by $619 per patient per month compared with usual care, and reduced hospital and ICU admissions, and hospital stays. ¹⁸ Echoing these findings, an Ontario report suggested that by moving just 10% of patients nearing the end of their life from acute care hospitals to hospice-based care can reduce health care costs by $9 million. ¹⁷

Home is the preferred place of death for most people; however, ∼60% of patients still die in a hospital setting. Home-based palliative care is an effective model that allows the patients to fulfil their goals of care at end of life, and die peacefully at home, while achieving the desired comfort level, adequate symptom control, high satisfaction levels among patients and reduced cost of the medical care. ¹⁹

Unfortunately, due to limitations in IFHP, refugee claimants in Canada have inequitable access to palliative care. Refugee claimants do have access to comprehensive palliative care services in Ontario, but it is limited to acute care settings. The IFHP provides a lifetime total of 40 hours of home care nursing and no access to personal support workers, occupational therapy services, or injectable medications through a home care pharmacy. Given the complexity of symptom management, the available resources are insufficient to ensure proper care for these patients in a home environment. In addition, refugee claimants do not have access to community-based hospices. Refugees at end of life are, therefore, left with little option but to suffer at home with inadequate support or to die in acute care facilities, whether they wish to be there or not.

Adding palliative home care under the umbrella of IFHP coverage will provide adequate medical and end-of-life care to refugee claimant patients with life-limiting conditions. This will subsequently save taxpayers' and provincial health plans' money by reducing the cost of unnecessary emergency department visits and prolonged hospital admissions. It is a vision the Canadian federal health care system must work doggedly toward, if the vision is ever to become reality.

Conclusion

Refugee claimants with life-limiting illnesses constitute a highly vulnerable marginalized population with limited access to hospice and community-based palliative care services in Canada. Increasing access to palliative care for refugee claimants in Canada through the IFHP would not only improve the quality of medical care but also reduce its total cost.