Letter to the Editor: Improving Access to Advance Care Planning in Current and Future Public Health Emergencies: International Challenges and Recommendations

Abstract

Dear Editor:

The importance and urgency of advance care planning (ACP) have been highlighted to provide goal-concordant patient care for better health care outcomes and make efficient use of scarce resources during the novel coronavirus disease 2019 (COVID-19) pandemic.¹ The relief of unnecessary suffering among patients and families in a situation of clinical uncertainty is the central offer of ACP. Learning from the pandemic is critical in a rapidly changing crisis to ensure that systems can respond with evidence-based health care. Evidence-based recommendations suggest communication as core skill required for ACP during the pandemic.

The challenge to widening patients' access to ACP globally is that most of the evidence for the effectiveness and implementation of ACP has been conducted in Western contexts. Evidence suggests that the practice of ACP may face cultural barriers in non-Western settings. For example, Taiwan demonstrates that patients' medical decision making is strongly influenced by family members and local social norms such as filial piety (a primary duty and virtue of respecting and caring for parents or the older relatives).

In Indonesia, contextualization of ACP within an individual's religious beliefs could facilitate engagement among religiously devout individuals. A recent consensus-based definition of ACP in Japan includes consideration for vulnerable individuals, such as those who hesitate to express in words their preparations for the future. Both in Japan and Indonesia, implicit communication might be considered sensitive for ACP discussion. A further potential obstacle is health care professionals not offering patients opportunities for ACP, viewing that outside their current role and lack of supporting resources.²

Developing relationships essential for shared decision making in ACP is challenging in the pandemic and postpandemic era. Health practitioners' remote assessment of patients for COVID-19 disease progression and discussions about future care plan seem to work well in some high-income countries.³ Meanwhile, the growth of mobile health technologies to expand access to ACP in low- and middle-income countries offers great potential.⁴ Provision of appropriate person-centered care that is concordant with the patient and/or family wishes using locally available technologies must be part of COVID-19 patient management.

ACP has been widely integrated into routine care in Western contexts, but it is still at the infant stage in other parts of the world. To achieve the intended goals in the global response, we urge careful adaptation in regions where ACP is a novel concept, and where infrastructure, staff training, and resource support will be necessary to elicit preferences and agreed goals of care.

In this letter, reflection and recommendations at different levels are introduced in the hope of facilitating adaptation of ACP through acculturation process globally (Table 1). We urge governments and national health care professional associations to endorse the abovementioned principles to develop their own culturally appropriate model of ACP for patients and their family caregivers to respond to the current crisis and prepare for future public health emergencies.

Table 1.

Recommendations for Global Advance Care Planning Initiative and Delivery for the Current and Future Public Health Emergencies

Systemic level

- Establish stable and firm infrastructure for telemedicine (i.e., stable and easy access Internet, adequate devices, and telephone hotlines)
- Amend the requirements and regulations to be inclusive (i.e., billing and reimbursement system, and ACP documentation through telehealth and telephone visits)
- Simplify the process of ACP participation, and reduce restrictions of access to ACP documents
- Include death and palliative care education as the fundamentals for different age groups
- Develop community-oriented ACP service and care model integrating distance medical care
- Devise a united (online) platform for data sharing across care settings nationwide
- Appreciate contextual differences intra/internationally on anticontagion policy and corresponding strategies to develop acceptable and feasible interventions

Organizational level

- Embed ACP services into routine care across different specialties and settings (i.e., not only for terminally ill population)
- Emphasize the proactive role of primary health care providers to initiate ACP conversations with patients with risk
- Provide continuous staff training and adequate manpower on ACP delivery using telehealth and telephone visits
- Secure funding to facilitate ACP delivery and reimburse ACP providers
- Change institutional policy to acknowledge ACP form completion and its effectiveness if appropriate
- Develop protocol to assist the patients appoint medical surrogates for future care decision making if needed
- Conduct ACP with supplement of telemedicine using locally available technologies
- Maximize the possibilities and means (i.e., provide PPE, supportive infrastructure, clear virus anticontagion protocol) to offer in-person support and communication if appropriate
- Provide e-educational brochure whenever possible (outpatient, inpatient, community and home care, etc.) to increase the exposure to ACP

Individual level

- Raise the public perception and awareness of the urgency and importance of ACP
- Honor the patients' care preferences by all means and encourage the appointment of medical surrogates to speak for patients who might lose self-determination opportunities due to rapid disease progression
- Improve health literacy, death literacy, and understanding of palliative care and ACP through social media and public propaganda
- Strengthen personal technology literacy and access to mobile resources to facilitate efficient communication among all parties (i.e., patients, family caregivers, medical surrogates, important others, and health care providers)
- Acknowledge that values for life goals and health vary by cultural background and religion
- Take contextual attributes (i.e., relational autonomy, family harmony, filial piety, implicit communication, and relevant religious beliefs) into account for enabling shared decision making
- Adopt codesign method with stakeholders (i.e., patients, family caregivers, medical surrogates, important others, and health care providers) to develop tailored ACP intervention
- Provide psychological and spiritual support to family and patients as social distancing policy induces a sense of lack of humanity

ACP, advance care planning; PPE, personal protective equipment.

References

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, et al. Implementations and strategies of telehealth during COVID-19 outbreak: A systematic review. BMC Health Serv Res, 2022; 22:833.

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