Tamar, a nurse originally from St. Catherine, Jamaica, came to Canada in 1995. Already a nurse in her home country, Tamar came to study at the University of Toronto. She recalled going to school every semester, even summers, with the goal of getting her bachelor’s degree as quickly as possible. After earning her Bachelor of Nursing in record time she worked and saved. Finally, Tamar was finally able to sponsor her parents and her now eight-year-old daughter, in 2001. Life in Canada was good for Tamar and her family. Her parents were retired, in their early sixties, and relatively healthy and independent. The entire family became proud Canadians and settled in the Scarborough area. Things began to change in 2016. Tamar had to make some difficult choices. Her father had a stroke in 2014 that had left him partially paralyzed. Her mother, his main caregiver, had now been diagnosed with dementia.
The challenge in developed countries: Demand
The baby boom of the post-war period, in combination with lower levels of fertility and longer lifespans, resulted in considerable demand for long-term care. There are fewer people who can remain at home to care for their elderly or ill relatives. That work may lead to migration away from the villages, towns, and cities where their families live. Demand for long-term and palliative care has outpaced the development of supply. As a highly regulated industry, it is not necessarily attractive to investors. Long-term and palliative care have been identified by many governments as an unsustainable economic burden. There are few supports to drive non-profit projects. Despite the financial burden, long-term care does not necessarily result in a better quality of life or care for the patient who needs it.
The challenge in developing countries: Supply
It is a mistake to define long-term and palliative care in purely clinical terms. This overlooks the major model and approach to long-term and palliative care in developing and middle-income nations, mainly the family. Institutional care for those who are dying or require considerable patient care is not prevalent outside of the first world. When families are responsible for such care, it limits the ability of family members designated for care to participate in the workforce, and places the financial and clinical care burden directly on the caregiver. From this perspective, long-term care can be seen as not only a financing issue, but also a labor force and economic issue. These challenges complicate the quality of care and quality of life for those providing care, and can restrict economic and productive development. Further, the gendered aspect of care mean that these caregiving burdens fall mostly on women.
Valuing informal care
Informal caregiving is undervalued. It is not included or analyzed as an economic indicator of productivity. While informal care seems to represent savings for government budgets, that is not the case. The loss of workers to unpaid caregiving also carries economic opportunity costs. A further issue is a lack of training for informal caregivers. As Rosa et al. (2018) described in their study of palliative care in Rwanda, family care cannot mitigate systemic and structural problems in accessing medical and other supports for a dying family member. Family care cannot reduce the burden of disease, late disease detection, barriers to preventative care, or limited financial resources. The traditional system of care by family members, while the most common form of care, is also fraught with problems for the informal caregivers. These impacts have included loss of income, employment fragmentation, risks of depression and social isolation, and poor health.
When Tamar realized that her parents could no longer live independently, she was at a loss. She was working in a senior position at a major hospital, and living about two hours away. Her now twenty-three year old daughter provided live-in care in the interim, delaying her own plans to complete university. Care costs, while cheap in relation to global standards in the developed world, were more than $4,400 per month for each of her parents. Their Jamaican pensions and Canadian benefits did not cover this entire amount. Although primary care was covered, there was a gap of about $2,400 per month that Tamar would have to pay out of pocket in order to provide for a private care facility. Tamar had long conversations with her mother’s sister and cousins in Jamaica. While relatives urged Tamar to bring her parents’ home, Tamar was not convinced that her parents were better off in a country with less advanced health and medical care.
The gap between supply and demand
The OECD (2016) has estimated demand as being approximately equivalent to 1.75% of a population over 65. As a per capita indicator, the value reflects both the increasing elder population alongside the development of long-term care capacity. OECD data on long-term care capacity indicates that developed countries tend to have the highest indicators of 50 to 130 beds per 10,000 seniors. Northern European countries such as Sweden and Netherlands boast the highest levels at the highest end of the spectrum. Of course, 1.75% of 10,000 is still 175 beds, and no country has achieved this capacity level. Put another way, supply is an issue regardless of context. It can be noted as well that low levels of long-term beds per capita can indicate cultural values which include discomfort with outsourcing care for family members. For example, Greece, Turkey, and Poland all had capacity values below 20 beds per 10,000 seniors.
The policy challenge
Once a person is in long-term or palliative care, they tend to stay there. Informal caregiving by a loved one becomes limited to visitation. Professionals take over all of the needs of the patient. It does not have to be this way. Once resident in a palliative or long-term care facility, the person still needs opportunities to spend extended time outside of the facility with friends and family, without losing their bed. Many policies and programs result in a patient losing their resident status at a facility if they were well enough to take a break at home. This could provide for more appropriately timed informal care. It would also allow family members to work around their other responsibilities and challenges to providing care. Both informal care, or private care can be financially challenging. Either there are lost earnings or payments for private care. The state, or various types of insurance, may provide some coverage of long-term health care costs. It is rare, however, that the financial needs of caregivers are recognized under these benefits. This creates pressure to choose the long-term care institutional model, in many cases.
Financial support for caregivers
Gardiner et al. (2020) described informal caregivers as the main source of long-term and end of life care. This was presented as a social justice problem given the inequitable financial burden on the caregiver. Financial costs can include lost earnings and expenses for transportation or accommodation. Policies to support informal family care, especially financial compensation, are needed. Some solutions have been implemented, but they are limited. In Canada, a national Employment Insurance program will provide payments of 55% of the insured workers’ regular earnings while they care for someone they consider to be family (15 weeks for a critically ill adult, 35 weeks for a critically ill child, or 26 weeks for a terminally ill adult). Requiring personal care is not necessarily a critical illness. In the United States, most state Medicaid programs provide little or no compensation to informal caregivers. The result in both countries is an either-or situation. Either the individual is in a long-term care facility, or they are cared for at home with fewer professional supports. Where families are able to take care of a family member at home, they may choose an institution because of the advanced care that their family member needs.
Tamar’s financial burden
Tamar described that she was making a good salary, about $80,000 annually, but her net biweekly paycheck was about $1,900. There were no tax credits even for taking on the financial challenge of her parents’ care. After depleting her parents’ savings, the cost of care left Tamar with just $700 a paycheck. Her daughter, now going to school full-time and working full-time, split a one-bedroom apartment with her. While they were close to the care home, they were far from work and school. Tamar said that once saw a meme on social media which proposed that cruise ship vacations, rather than long-term care was better and cheaper. Tamar did the research and said that in fact, the costs were comparable. With help from her daughter, she made it work. In 2018, her father passed away. Tamar still feels guilty about the financial relief that she experienced when she only had to pay for her mother’s care. Overall, Tamar felt that she had made the right decision. She loved her parents, and she felt that their health and quality of life were better supported in Canada. She believed this right up until the pandemic hit in March of 2020.
Affordable options overseas
The affordability challenge is a major one. Challenges of insufficient availability and a lack of affordability can lead to considering international alternatives. The cost of long-term and hospice care varies greatly across nations and regions. As with many other healthcare and lifestyle challenges, often people seek lower-cost alternatives in other countries. Countries that have previously marketed retirement, including Mexico and Latin American destinations, have begun to offer long-term care for their retired expatriate populations.
|FULL-TIME IN-HOME CARE SUPPORT (MONTHLY)||ADULT DAYCARE (MONTHLY)||ASSISTED LIVING FACILITY||NURSING HOME (SEMI-PRIVATE) (MONTHLY)||NURSING HOME (PRIVATE ROOM) (MONTHLY)|
|United States||$4,290 – $4,385/ |
€3,890 – €3,976
|Thailand||฿8000 – 10,000/ |
€240 – €300
|฿20,000/€601||฿16,000/€480||฿10,000 – ฿35,000/ €300 – €1,050||฿18,000 – ฿53,000/ €540 – €1,591|
|United Kingdom||£3,500/€4,072||…||£4,550/€5,294||£5,000/ €5,816||£5,488/€6,385|
|Spain||€3,122||…||…||€1,800 -€3,300||€1,800 -€3,300|
Long-term care for foreigners in Southeast Asia
Another trend has been the major development of long-term and hospice industries in Southeast Asian countries such as Thailand and Malaysia, which are catering to foreigners. Thailand provides for a one year visa for anyone fifty years or older who can meet basic income criteria. This visa can be extended annually. These services were in large part driven by demand from Japanese pensioners. As Toyota and Xiang (2012), the Japanese population was aging in a pattern similar to Western countries. Over time, other niches have been developed. For example, Horn et al. (2015) and Bender et al. (2017) described long-term care homes in Southeast Asia catering to German speakers, and other specific nationalities in Central Europe. Sasat et al. (2013) investigated the characteristics of nursing homes, staff, and residents. This team reported a resident to staff ration of 2.4:1, along with the same difficulties in recruiting and retaining staff found in all jurisdictions. About half of the expatriate residents were moderately to totally dependent on care. Of concern was the lack of standards or oversight body, and no ability to compare quality on the basis of standardized indicators.
Tamar questions the costs, quality, and choices
A succession of ambulances were sent to a nearby nursing home, with multiple casualties. This was not a fire or gas leak, but rather it was COVID-19 related. Tamar saw this on the news, and she was worried about her mother. Tamar described months of total chaos, unable to visit her mother, and unsure about the staffing levels and care that her mother was receiving. After five months of social isolation, her mother passed away. Tamar was devastated to lose her mother. More recently, a report authored by the Canada military who responded to the problems at the home pointed to lack of care, including dehydration, as the cause of death for many residents. She could not help but think about how she provided nursing care for others, while failing to really assess the quality of care her parents were receiving. The military report referred to pests, a failure to provide basic care, and evidence that this was an ongoing problem.
Long-term and palliative care during the pandemic
It is widely reported that globally, half of those who died of COVID-19 were residents of long-term care facilities. These risks extended to the staff of residential homes. This was true of developed and undeveloped nations. What is less clear is whether those people cared for at home by informal caregivers fared better. Tamar had to make a decision about long-term care for her parents under great pressure. She had to find a solution, any solution, as quickly as possible. Tamar’s decisions were driven by wanting to remain close to her parents. Tamar could not overcome the challenges of isolation imposed by the pandemic. She feels terrible that her mother’s final months were spent alone. Should she have made care arrangements for them to return home to Jamaica, where they would have received informal care in the context of the family? She is no longer sure.
Dive in to the Research
Bender, D., Hollstein, T., & Schweppe, C. (2017). The emergence of care facilities in Thailand for older German-speaking people: structural backgrounds and facility operators as transnational actors. European journal of ageing, 14(4), 365-374. doi url
Bender, D., Hollstein, T., & Schweppe, C. (2018). International retirement migration revisited: From amenity seeking to precarity migration?. Transnational Social Review, 8(1), 98-102. doi url
Brown, K. A., Jones, A., Daneman, N., Chan, A. K., Schwartz, K. L., Garber, G. E., … & Stall, N. M. (2021). Association between nursing home crowding and COVID-19 infection and mortality in Ontario, Canada. JAMA internal medicine, 181(2), 229-236. DOI: 10.1001/jamainternmed.2020.6466 https://scholar.google.com/scholar_url?url=https://jamanetwork.com/journals/jamainternalmedicine/articlepdf/2772335/jamainternal_brown_2020_oi_200093_1611344134.43817.pdf&hl=en&sa=T&oi=ucasa&ct=ufr&ei=eVSwYK74K8iMy9YPteqCgAM&scisig=AAGBfm0vgvL3u0sdlmAhixZCM9PqSpOT4w
Gardiner, C., Robinson, J., Connolly, M., Hulme, C., Kang, K., Rowland, C., … & Gott, M. (2020). Equity and the financial costs of informal caregiving in palliative care: a critical debate. BMC Palliative Care, 19, 1-7. doi url
Genworth. (2019) Cost of Care Survey 2019. Available from: https://www.genworth.com/aging-and-you/finances/cost-of-care.html
Government of Thailand. (n.d.). Hospice Care. Available from: https://photos.state.gov/libraries/thailand/231771/acs/hospice_list.pdf
Horn, V., Schweppe, C., & Bender, D. (2015). “Moving (for) elder care abroad”: The fragile promises of old-age care facilities for elderly Germans in Thailand. In Transnational Aging (pp. 175-189). Routledge.
Jennings, N., Chambaere, K., Macpherson, C. C., Deliens, L., & Cohen, J. (2018). Main themes, barriers, and solutions to palliative and end-of-life care in the English-speaking Caribbean: a scoping review. Revista Panamericana de Salud Pública, 42, e15. doi url
Jennings, N., Chambaere, K., Chamely, S., Macpherson, C. C., Deliens, L., & Cohen, J. (2020). Palliative and End-of-Life Care in a Small Caribbean Country: A Mortality Follow-back Study of Home Deaths. Journal of Pain and Symptom Management, 60(6), 1170-1180. doi url
May, P., Morrison, R. S., & Murtagh, F. E. (2017). Current state of the economics of palliative and end-of-life care: A clinical view. European Association for Palliative Care, 31(4), 293. DOI: 10.1177/0269216317695680 https://journals.sagepub.com/doi/full/10.1177/0269216317695680
OECD (Organization for Economic Co-operation and Development). (2016). Long-Term Care Data: Progress In Data Collection And Proposed Next Steps. Available from: http://www.oecd.org/officialdocuments/publicdisplaydocumentpdf/?cote=DELSA/HEA/HD(2016)3&docLanguage=En
Rosa, W. E., Male, M. A., Uwimana, P., Ntizimira, C. R., Sego, R., Nankundwa, E., … & Moreland, P. J. (2018). The Advancement of Palliative Care in Rwanda: Transnational Partnerships and Educational Innovation. Journal of Hospice & Palliative Nursing, 20(3), 304-312. doi url
Rosenberg, J. P., Horsfall, D., Leonard, R., & Noonan, K. (2018). Informal care networks’ views of palliative care services: Help or hindrance?. Death studies, 42(6), 362-370. doi url
Toyota, M., & Thang, L. L. (2017). Transnational retirement mobility as processes of identity negotiation: the case of Japanese in South-east Asia. Identities, 24(5), 557-572. doi url
Toyota, M., & Xiang, B. (2012). The emerging transnational “retirement industry” in Southeast Asia. International Journal of Sociology and Social Policy, 32(11/12), 708-719. DOI: 10.1108/01443331211280737 https://doi.org/10.1108/01443331211280737