Summary
Our programme delivers educational and training activities to the general public and healthcare professionals, with the aims of disseminating knowledge, raising awareness, and enhancing capacity in end-of-life (EOL) care in Hong Kong. In EOL care, a critical component is Advance Care Planning (ACP), the process through which patients communicate their preferences about the type of care that they would like to receive in the EOL stage. Accordingly, one of the major activities conducted under our programme is the interactive family sessions on ACP. These sessions are conducted, approximately once per month, for a small group of older patients and their family members recruited from the public hospitals, with the aims of allowing them to understand the various treatment options in EOL care, and, more importantly, enabling and facilitating the ACP communication process. In each session, basic concepts in EOL care and ACP are first introduced through interactive case sharing and scenario-based discussions, after which participants are encouraged to express their thoughts, preferences, and concerns in this regard, as well as to document them. Notably, doctors and nurses from the geriatric wards are also invited to join the session, thereby allowing them to directly observe and understand the preferences of their care recipients. When appropriate, follow-up meetings will be arranged on a case-by-case basis, such that mentally-prepared patients and their family members can initiate the ACP communication process, and fill out the relevant documents if necessary, under the medical guidance of experienced healthcare staff.
Planning and Implementation
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What was the challenge you were trying to address?
As mentioned above, EOL care, and in particular ACP, are crucial to ensuring the provision of quality long-term care to older people, which are however often neglected in the Hong Kong healthcare system. One major obstacle is that it has become a common perception in our society that older people are afraid of talking about death. Thus, healthcare professionals often presuppose the presence of such death taboo and do not bother discussing EOL issues with older patients. This assumption is, however, outdated and incorrect, as numerous recent studies and observations have revealed that older people do have EOL preferences and are willing to discuss them, especially when appropriate guidance is provided. On the other hand, older people often do not realize that they actually need to communicate their preferences in order for others to follow and execute their plans. They may choose to disclose their thoughts to some of their close acquaintances, rather than to the surrogate decision makers. In addition, they may fail to recognize the importance of a formal, official documentation of their preferences. Worse still, although many of them have a general idea about how they may want to live in the EOL stage, they do not know how to formulate them into concrete decisions. For instance, some prefer to pass away without pain, rather than live with suffering. However, they may not know that they need to refuse life-sustaining treatments in order for their preferences to be actualized.
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Who were you trying to impact?
Older people in general, Older people with chronic health conditions or disability
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What sectors were you targeting?
Long-term care
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Who else was involved?
Civil Society Organization, Health Care
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How did older people participate?
Older people were part of the process at multiple or all stages
Lessons learned
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Please describe how collaboration worked in your initiative.
As stated above, participants of the interactive family sessions on ACP are recruited from public hospitals in New Territories East cluster in Hong Kong, which, in particular, include Shatin Hospital, a non-acute hospital managed by Hospital Authority. We have established a collaborative network with these hospitals, in the sense that healthcare staff use their clinical expertise and experience to identify those who may benefit from ACP. In other words, these hospitals serve as a medium between our programme and the potential participants. More importantly, appropriate referrals are made to these hospitals to enable follow-ups and facilitate the initiation of EOL conversations. In some cases, older patients and their family members conduct ACP under suitable medical guidance. In some other occasions, upon expressing their preferences to minimize sufferings, EOL patients are transferred to other hospitals that are more oriented towards a palliative approach. On the other hand, most of the sessions are held in the Jockey Club Centre for Positive Ageing, which is located near Shatin Hospital. Such geographical proximity does not only offer convenience to the participants, but also encourage healthcare professionals to join the sessions despite their heavy workload and busy schedules. In addition, the centre provides a comfortable and reassuring environment, which is a favorable factor for eliciting thoughts and feelings from the participants. Last but not least, our programme is initiated and funded by The Hong Kong Jockey Club Charities Trust, which is a philanthropic organization and one of the world’s top charity donors that commits to improving Hong Kong people’s quality of life.
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What was the impact of your initiative on older people, their families, and/or their communities?
From the perspective of older patients, perhaps the most fruitful outcome of the interactive family sessions on ACP is that they are given the channel to express their EOL preferences, which allows their family members and healthcare professionals to understand their thoughts, and thereby making possible the provision of goal-concordant and value-aligned care. This is not merely empty talk, as some participants really took the opportunity to initiate ACP and indicate through follow-up meetings that they would refuse to receive invasive life-sustaining treatments in the EOL stage. As it turned out in the end, they managed to avoid unnecessary pain and sufferings, maintained well-being and quality of life, and passed away peacefully with dignity and a sense of control. Evidently, such ideal scenarios would not have been possible without the impact of our programme. On the other hand, from the perspective of the family members, the sessions can, perhaps unexpectedly, serve a therapeutic purpose. That is because, in the context of EOL care, family conflicts regarding medical decisions, post-death arrangements and succession matters are common owing to misunderstandings and poor communication. In addition, if not handled properly, unfinished businesses can often result in more intense and long-lasting grief. In this regard, the sessions can help family members address and resolve these difficult issues, thereby getting them mentally prepared for the loss. In other words, the sessions are not merely informational and knowledge-inculcating in nature, but also undertake the function of pre-death bereavement care.
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What issues did you face, and how did you address them?
ACP is not one-shot in nature, as it requires iterations of reflection, introspection, decision-making, review, and revision, as well as communication between the relevant parties. In addition, from the perspective of older people, concepts and nomenclature in EOL care often constitute an information overload, which is demanding to digest and absorb at once. Thus, a single interactive family session on ACP, which lasts for only about 2 hours, is far from enough to let the participants understand everything, go through the thinking process, and make a record of their preferences. Follow-up meetings can certainly address these issues, but such a case-by-case mechanism is not necessarily applicable to all participants, and is also not as scalable. A workaround solution is the aid of educational materials. More specifically, our programme has developed a booklet called the ACP Handbook, a well-illustrated, easy-to-follow manual containing many useful information that can help older people learn and review the concepts in EOL care even after the sessions. In addition, the Handbook can guide older people to think about their EOL preferences, and to record their values and decisions. For instance, there are some hypothetical questions that can help the readers identify whether they would prioritize prolongation or quality of life in the EOL stage. Finally, although the Handbook is not an official document, it can serve as a valuable reference that enables family members and healthcare professionals to understand the preferences of older patients in advance, that is, even before the ACP process is initiated.
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What lessons did you learn from implementing this initiative?
There are two observations that require our further contemplation. First, most, if not all, previous participants of the interactive family sessions on ACP did want to know and discuss more about the issues in EOL care. Many of them had even taken the initiative to discuss with healthcare professionals, but to no avail. This provides further evidence to suggest that the healthcare system in Hong Kong is lacking capacity in EOL care, in particular the communication aspect. Healthcare professionals are often too busy to respond, in an empathetic manner, to the concerns raised by older patients and their family members. They may downplay the importance of the communication process and overly fixate on the medical aspects. Consequently, although older people may have the awareness to plan for EOL care in advance, they are obstructed by many barriers. Second, using a hypothetical question, we observed that the majority of participants preferred quality to prolongation of life, as would be expected. However, when asked to act as a decision surrogate, many of them gave an opposite response, that was, lives should be given the highest priority and saved at all costs. This inconsistency might be due to the traditional philosophy of filial piety. In other words, decision surrogates may prefer more aggressive treatments in order to engage in good conduct and show a virtue of respect. This observation shows that it is not reasonable to assume a tacit mutual understanding. Instead, EOL preferences must be explicitly expressed and communicated.
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Do you have any other reflections you would like to share?
The COVID-19 pandemic has posed some minor challenges to the implementation of the interactive family sessions on ACP. Due to its discussion-based nature, the sessions are not suitable to be conducted online. In view of this, the face-to-face sessions had been suspended for a while because of the social distancing measures. On the positive side, the pandemic has also brought some new possibilities to the sessions. In particular, since healthcare professionals have already adapted to the virtual learning environment, we realized that the sessions can actually be conducted in a hybrid mode. More specifically, while the sessions are still delivered to the participants in a face-to-face manner, they can be broadcast live or recorded, such that interested healthcare staff can also participate, even without their physical presence.