Page 8 - 20191216_ViewsOnConsultationDocumentEOLCare

OHKF resonates with the legislative proposal that certain safeguards are essential to the validity
of an AD. An uncontroversial and up-to-date presentation of an AD as indicated in paragraph
4.24 (b), (c) and (d) is crucial to manifest most fundamental values listed in paragraph 4.8. Yet,
there is potentially a risk that further protective measures would become over-restrictive
which may eventually deter motivation in making an AD.

For instance, the current proposal of assigning responsibilities to patients and their families for
keeping and presenting the original copy of an AD would conceivably place huge expectations
upon individuals. Keeping and presenting the original copy could be tiresome, is largely reliant
on an individual’s communication with close ones and is not necessarily efficient. Importantly,
on top of the fragility of the paper form, family members may not know the storage location of
the AD that could result in hindrance or failure of presentation to emergency rescue personnel.
As previously discussed, there is generally low awareness and a proven lack of confidence in
handling end-of-life decisions that includes making ADs. As such, it is highly perceivable for
local citizens to be discouraged in pursuing all these detailed steps associated with the proposed
legal framework for making an AD, conflicting with the intention of this consultation paper.

International examples have shown that an individual’s responsibility to present the original AD
form is not the only approach that could be taken. In the UK, although the supporting Code of
Practice states that it is an individual’s responsibility to take steps to ensure health professionals
will be drawn to the existence of an advance decision, the following formats of presentation are
accepted in addition to the original physical form (AgeUK, 2019):

 Copies in GP and hospital records,

2
 Copies in Summary Care Records ,

 A physical card in wallet informing an existence of an AD, and

 Secure emergency personal record.

In another example, according to the “Medical Treatment Planning and Decision Act 2016”
which took effect since March 2018 in Victoria, Australia, medical practitioners and not patients
are obliged to make reasonable efforts to locate an Advance Care Directive (ACD) and patients’
Medical Treatment Decision Maker (MTDM)’ (The Parliament of Victoria, 2016). Acceptable
efforts are believed to include a check of digital health records, clinical records, or contacting the

2 Summary Care Records are an electronic record of key clinical information sourced from the GP records, used by
healthcare professionals and authorized by patients to support their care and treatment (NHS Digital).

8