Awareness of Palliative Care and Advanced Care Planning among Asian Population
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Awareness of Palliative Care and Advanced Care Planning among Asian Population
Introduction
Advance care planning (ACP) is a process that involves proactive communication and discussion about end-of-life care (Zwakman et al., 2018). Patients with terminal diseases and advanced progressive diseases make decisions about the medical care they would prefer to receive in advance, in case they become incapable of making decisions. Advanced care planning includes discussing individual values and preferences; selecting surrogate decision-makers; discussing treatment options; and documentation of advance directives (Zwakman et al., 2018). Palliative care aims to improve and optimize the quality of life for patients with serious illness and their families by preventing and relieving the suffering that comes with serious and terminal diseases (Hall et al., 2019). Facilities that provide advance care planning identify and document individual preferences and this aligns with the objective of palliative care. Other benefits associated with ACP include unnecessary futile treatments, decreased hospitalization, reduced healthcare costs, and reduced anxiety, stress, and depression for the patients and their family members (Hall et al., 2019). This paper will analyze and discuss the awareness of palliative and ACP among Asian populations.
Target
The selected target population is the Asian community. Just like other populations, the Asian community recognizes aging as a critical and important healthcare issue. According to La et al (2020), the Asian community views advance care planning as the honor to patient autonomy. Asians are influenced by the concept of ‘filial piety,’ and Confucianism, and hence patient autonomy is secondary to the family values and the authority of healthcare practitioners (Cheng et al., 2020). The supremacy from the family and healthcare practitioners during the end-of-life decision-making for patients is recognized as a cultural aspect among Asians. Healthcare practitioners normally reveal the poor prognosis for patients and the appropriate treatment options to the male family members and not the patient. This, therefore, means that the patient in the Asian community is not actively involved in their end-of-life care and advance care planning.
A study carried out by Lee et al (2018) indicated that there are a low knowledge level and misconceptions about palliative care, hospice, and advance care planning. This study indicated that advance planning directive is not common among the Asian community and the community experiences challenges in conceptualizing advance care planning. For example, families often put all their efforts to try to prevent death for their loved ones and they prefer a family member to stay with the patient in the hospital to ensure the resuscitation process is attempted (La et al., 2020). This is because the family members do not want to have any guilt for not doing enough for their loved ones during the last moments of life. Additionally, Asians mostly focus on the longevity of life, rather than the quality of life.
Additionally, in the Asian community, the decision of the physician and the family overrides patient autonomy. Moreover, the family members may choose to protect their loved one by not informing the patient about the serious prognosis and this may be reluctant to place the patient for palliative care or discuss advance care planning (Cheng, 2018). Asians are normally influenced by traditional Asian culture and thus discussing taboo subjects like death or dying is uncommon.
Assessment
ACP for life-timing and serious illness is vital in promoting and communicating an individual’s values, preferences, and interests when one is no longer able to make such medical decisions. In various countries including the US, ACP provides a framework to document preferences about palliative and curative interventions, including appointing a substitute decision-maker. Studies within the US indicate that majority of people think regarding end-of-life issues and think that it is important to educate patients and their families about end-of-life and palliative care options (Jimenez et al., 2018). In the US, the use of ACP has significantly evolved while in the UK ACP related to end-of-life care was implemented through. Mental Capacity Act (MCA) of 2005. The Mental Capacity Act (MCA) guides the advance care planning within the UK, while within the US ACP is guided by parts of federal and state laws that contain overlapping policies.
Living wills are legal in all American states. State legislation endorses a legal ideal for advance care planning that provides the legal procedures that protect the susceptible populations from harm due to the diminished capacity to make decisions (Jimenez et al., 2018). The evidence of the patient’s wishes is supposed to be documented according to the state and federal laws within the US. Durable attorney powers for healthcare statues allow patients to select a trusted person to make decisions on their behalf in case one is incapacitated to make medical decisions. All states within the US have laws that allow patients to appoint a healthcare proxy who is the first-lie to make treatment decisions if one is not in a position (Stein & Fineberg, 2015). Additionally, the federal Patient Self-Determination Act requires healthcare organizations and nursing homes to let patients know their rights about executing advances and directions. The Centers for Disease Control and Prevention (CDC) acknowledges that Americans need to be educated regarding advance care planning in order to improve the quality of life during the end-of-life. In the US, end-of-life is progressively being perceived as a public health issue, due to its ability to prevent unnecessary suffering and support the decisions and preferences of the patient regarding end-of-life care.
There are more than 1800 hospitals providing palliative care programs, which indicates that over 80% of American patients who are admitted for serious and terminal illnesses have access to palliative care services (Stein & Fineberg, 2015). However, some studies indicate that even in the US, where palliative care is progressive being used, the number of people that have advance directives to express their end-of-life care wishes, is not as high (Stein & Fineberg, 2015).
However, even though more than 80% of Americans can access palliative care services, the uptake of palliative care among the Asian community is low. Additionally, the number of Asians who have advance care directives is insignificant (Biondo et al., 2017). According to the Asian culture, it is taboo to discuss death and dying as such discussions are associated with bad luck and bad omen to the family. Therefore, initiating topics such as advance care planning is considered taboo and disrespectful among Asian community members. When managing end-of-life care of family members, the family is expected to put efforts to prolong the life of their loved ones. The cultural and moral concerns for the Asian community explain why a limited number of the population enrolls for advance care planning or palliative care (Lee et al., 2018). The lack of awareness and knowledge regarding what defines a good death deters the refinement of the quality of life end-of-life care for the Asian community.
Data Analysis
Cultural beliefs and values, as well as ethnicity and spiritual aspects, provide the necessary support to patients and family members when faced with serious illness and during the transition from life to death (Cheng et al., 2020). For example, in the Asian community, the spiritual aspect provides a sense of connection to self, God, and other people when facing a serious illness or crisis.
The cultural beliefs significantly affect their utilization of palliative care. The Asian community is family-centered and thus the community prefers not to disclose a poor prognosis to the patient, avoid advance directives, avoid palliative care, and instead seek aggressive treatment for their loved ones (Cheng, 2018). Making end-of-life and death decisions is a tremendous burden for the Asian community due to their beliefs and values.
Additionally, the Asian community lacks accurate information about palliative care and their families may not be able to access personal advice from other Asians who have benefited from palliative care. The low enrollments rate in palliative care and advance directives is thus attributable to lack of knowledge, cultural beliefs that make it a taboo to talk about death, and the potential feelings of failure are someone else is allowed to take care of their seriously ill and aging family members (Cheng, 2018).
Determinants of health also influence the ability of the Asian community to utilize palliative care services. According to Cheng et al (2020), ethnic minority groups such as Asian Americans are less likely to utilize palliative care services. Lack of access, low educational levels, and low health literacy are some the factors that hinder the Asian community from accessing and utilizing palliative care services. Moreover, differential utilization of palliative care services between urban and rural settings may exist due to the lack of dissemination of information regarding palliative care services instead of geographic proximity, or factors like lack of high bed supply within an urban region, proximity to the healthcare organization, access to a reliable family member, as well as low available of palliative care facilities (Biondo et al., 2017).
Diagnosis
The cultural beliefs for the Asian community affect priorities at the end-of-life, for instance, the need to manage pain, respect for the individual’s dignity, and the significance of involving the patient, healthcare providers, and family members when managing end-of-life care issues. Biondo et al (2017) suggest that a comprehensive end-of-life care plan for the Asian community should integrate considerations within the psychosocial, physical, and spiritual needs.
Additionally, the Asian community is unaware of the importance of palliative care and advance care planning for patients with serious illness and progressive terminal diseases. Therefore, the Asian community needs education in palliative care to design an approach to meet the cultural values, needs, and beliefs of the Asian community. A culturally suitable model of palliative care that integrates and respects the cultural values and beliefs of the Asians would be suitable to address the knowledge gap regarding palliative care and directive care planning for this population. This will ensure that the Asian community will start embracing palliative care and advance care planning and view them as an important part of the end-of-life journey.
Conclusion
Evidence indicates that there is low reuptake of palliative care services and the use of directive care planning among the Asian community members. The cultural beliefs and values hinder this population group from utilizing palliative care services. For example, the Asian community considers it taboo to talk about issues related to death, and thus they are unlikely to make advance care planning. Similarly, the Asian community prefers taking care of their loved one when they are seriously sick and thus may not be keen to enroll the patient for palliative care. Other aspects likely to contribute to the low level of utilization of palliative care services and advance care planning include lack of awareness, social determinants of health, and spirituality.
References
Biondo, P. D., Kalia, R., Khan, R. A., Asghar, N., Banerjee, C., Boulton, D., … & Simon, J. E. (2017). Understanding advance care planning within the South Asian community. Health Expectations, 20(5), 911-919.
Cheng, S. Y., Lin, C. P., Chan, H. Y. L., Martina, D., Mori, M., Kim, S. H., & Ng, R. (2020). Advance care planning in Asian culture. Japanese journal of clinical oncology, 50(9), 976-989.
Cheng, H. W. B. (2018). Advance care planning in Chinese seniors: cultural perspectives. Journal of palliative care, 33(4), 242-246.
Hall, A., Rowland, C., & Grande, G. (2019). How should end-of-life advance care planning discussions be implemented according to patients and informal carers? A qualitative review of reviews. Journal of Pain and symptom management, 58(2), 311-335.
Jimenez, G., Tan, W. S., Virk, A. K., Low, C. K., Car, J., & Ho, A. H. Y. (2018). Overview of systematic reviews of advance care planning: summary of evidence and global lessons. Journal of Pain and symptom management, 56(3), 436-459.
La, I. S., Lee, M. C., Hinderer, K. A., Chi, I., Liu, R., Liu, M., & Fu, Y. (2020). Palliative Care for the Asian American Adult Population: A Scoping Review. American Journal of Hospice and Palliative Medicine®, 1049909120928063.
Lee, M. C., Hinderer, K. A., & Alexander, C. S. (2018). What Matters Most at the End-of-Life for Chinese Americans?. Gerontology & geriatric medicine, 4, 2333721418778195. https://doi.org/10.1177/2333721418778195
Stein, G. L., & Fineberg, I. C. (2015). Advance care planning in the USA and UK: a comparative analysis of policy, implementation, and the social work role. British Journal of Social Work, 43(2), 233-248.
Zwakman, M., Jabbarian, L. J., van Delden, J., van der Heide, A., Korfage, I. J., Pollock, K., Rietjens, J., Seymour, J., & Kars, M. C. (2018). Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness. Palliative medicine, 32(8), 1305–1321. https://doi.org/10.1177/0269216318784474.