ISE07/18-19

• In Hong Kong, there are increased concerns over the quality of end-of-life care for patients with terminal illnesses (e.g. cancers causing one-third of overall local deaths of some 46 000 in 2017).^{1Legend symbol denoting Centre for Health Protection (2019).} Some terminally-ill patients have strong preference not to receive certain traumatic life-sustaining measures like cardiopulmonary resuscitation ("CPR") which may be able to prolong lives for a while, but at the cost of additional suffering. There are growing calls in the local community (including medical practitioners) to respect the written wishes of mentally capable patients to withhold certain treatments under prescribed conditions in the form of "advance directives" ("ADs"), in line with overseas practice.^{2Legend symbol denoting In some places, the AD may refer to a document which includes various decisions related to end-of-life care (most notably the appointment of a substitute decision maker and donation of organs) on top of the decision to refuse life-sustaining treatments. However, official documents in Hong Kong usually use the narrow definition (i.e. treatment refusals), which was commonly known as a "living will" in America. See Law Reform Commission (2006).}
• The Government concluded that it was not yet the "appropriate time" to implement ADs through legislation in 2010, after recommendations made by the Law Reform Commission ("LRC") in 2006 and a public consultation launched in 2009, as the public still considered it a taboo.^{3Legend symbol denoting GovHK (2012).} While the Hospital Authority ("HA") has implemented ADs by administrative means since 2010, the feedback is rather lukewarm due to low public awareness, reluctance of doctors to certify ADs and other implementation issues.^{4Legend symbol denoting Legislative Council Secretariat (2018).} In the 2018 Policy Address, the Chief Executive pledged to "consult the public in 2019" again on AD arrangements, upon completion of a three year consultancy study on "quality of healthcare for the ageing".^{5Legend symbol denoting Legislative Council Secretariat (2019).}
• Globally, at least 20 advanced places have AD legislation by 2018.^{6Legend symbol denoting As at 2018, at least 17 out of 28 member states of European Union had specific legislation on ADs. Other advanced countries with such legislation include Australia, Canada, Singapore and the United States. See Irish Hospice Foundation (2016), Nys et al. (2013) and Sulmasy (2018).} The United States ("US") is the earliest promoter of ADs, with California enacting the first of such legislation in 1976, followed by enhancement measures to facilitate its implementation. About 37% of the adult population in the US had made ADs by 2017, amongst the highest in the world.^{7Legend symbol denoting Most Western European countries reported the prevalence of advance directives in the range of 10%-20% among the general population. For English-speaking countries, the uptake rates were 4% for England in 2013 and 14% for Australia in 2014. See Government Accountability Office (2019), Kitzinger et al. (2016) and White et al. (2014).} This issue of Essentials first reviews the case for ADs and policy developments in Hong Kong, followed by an account of the pertinent legislation and policy experience in the US.

Recent policy developments of advance directives in Hong Kong

• Case for ADs: Among the 1.2 million elderly population aged 65 and above, many are prone to terminal illnesses before death. Taking malignant neoplasms as an example, they contributed to some 14 400 deaths in 2017, taking up one-third of overall deaths.^{8Legend symbol denoting Centre for Health Protection (2019).} Though some invasive treatments can extend lives for a short while, some terminally-ill patients prefer not to undergo such pain at all.
• According to survey findings, local deceased persons living in care homes on average need to be hospitalized 2.6 times for a total of 26 days during the six months before death, whereas an overwhelming 88% of local adults indicated their preference for comfort rather than prolonged life at life's end.^{9Legend symbol denoting Chung et al. (2017) and Luk (2018).} However, many terminally-ill patients cannot convey these healthcare decisions to doctors timely enough, due to worsening mental competency especially when having dementia. As some 115 000 or 10% of local people aged 65 and above have dementia, such patients may want to state their healthcare wishes in advance through ADs in written form.^{10Legend symbol denoting Chinese University of Hong Kong (2018).}
• Existing implementation framework: While there is no dedicated legislation on ADs in Hong Kong at present, instructions of patients made in ADs are recognized under common law. To facilitate implementation, HA issued a standard form for ADs in July 2010 for local adults to fill in, along with a detailed guideline for HA clinicians.^{11Legend symbol denoting Hospital Authority (2016).} Here is the implementation gist:
  
  

  (a)	Refusal of life-sustaining treatments: In the standard form, patients can opt to refuse certain life-sustaining treatments (e.g. CPR, artificial ventilation and artificial nutrition)12Legend symbol denoting A shorter AD form containing only the refusal of cardiopulmonary resuscitation ("CPR"), a common and invasive life-sustaining treatment, was introduced in 2014 to "help reducing the psychological stress that may arise from signing the more complex full AD form". See Hospital Authority (2015b). under three prescribed conditions, namely (i) terminally ill; (ii) persistent vegetative state; and (iii) other end-stage irreversible life limiting conditions;13Legend symbol denoting "Other end-stage irreversible life-limiting conditions" include (i) end-stage renal failure, end-stage motor neuron disease, and end-stage chronic obstructive pulmonary disease which do not fall into the category "terminally ill" because life can be prolonged by dialysis or assisted ventilation; and (ii) irreversible loss of major cerebral function and extremely poor functional status. See Hospital Authority (2014).
  (b)	Signatures of two witnesses including a doctor: The AD form requires signatures of two witnesses, one of whom must be a registered doctor who should be satisfied that the patient is mentally competent and well-informed of the decisions made in the AD. If this doctor works in HA, this creates an opportunity for discussion of ADs and end-of-life care with patients and their families;14Legend symbol denoting The Hospital Authority ("HA") revised its Guidelines on Life-sustaining Treatment in the Terminally Ill to include the concept of advance care planning to engage patients and their families in discussion of end-of-life decisions in 2015. See Hospital Authority (2015a).
  (c)	ADs taking effect at times of losing mental capacity: The AD will take effect when the patient has lost decision-making capacity under the three prescribed conditions discussed above. These conditions have to be certified by two doctors; and
  (d)	Applicability of ADs witnessed by non-HA doctors: For those ADs witnessed by an HA doctor, they are filed by HA for cross-checking when in need. However, for ADs made outside HA, their validity may be prone to challenge from HA doctors. If family members of patients cast doubt on ADs, the treating doctors also need to carry on life-sustaining treatment while awaiting clarification.

• Implementation issues: So far, the public response to ADs is lukewarm, with only 5 561 ADs made with HA during 2012-2018, due to multiple barriers.^{15Legend symbol denoting GovHK (2019).} First, public awareness of AD is low. According to a survey commissioned by the Government in 2016, as many as 86% of local adults had not heard of ADs before, although 74% thought that making ADs was a good approach once informed of the concept.^{16Legend symbol denoting Chung et al. (2017).} Secondly, doctors in both private and public sectors are reluctant to certify ADs, partly due to latent responsibilities behind. Doctors are particularly concerned that patients may change their mind once entering the end-of-life stage.^{17Legend symbol denoting Legislative Council Secretariat (2018) and Tse (2018).} Thirdly, there are frequent disputes between doctors and patients' families over the validity of ADs, making execution difficult in the absence of statutory provisions.^{18Legend symbol denoting 陳曉蕾(2016)。} Fourthly, while HA doctors have to respect patients' wishes expressed in ADs in principle, they also need to deal with opposition of family members of patients "with sensitivity", according to HA guideline. This leads to continuation of life-sustaining treatment in case of disputes.^{19Legend symbol denoting Hospital Authority (2016).} Fifthly, certain healthcare workers are bound by law to resuscitate dying persons during emergencies. Under the Fire Services Ordinance (Cap 95), paramedics have to "resuscitating or sustaining" the life of a patient, even though he or she has an AD.
• Public consultation on ADs scheduled for the second half of 2019: The Government concluded in March 2010 after a public consultation that ADs should be implemented in Hong Kong by "non-legislative means".^{20Legend symbol denoting GovHK (2012).} However, in the light of the above concerns after implementation under HA framework for eight years and newly available study findings, the Government pledged to consult the public again in the second half of 2019 on future arrangements of ADs.

Policy developments of advance directives in the United States

• Case for ADs in the US: As many as 70% of deceased elderly persons in the US had been incapable of making decisions on the end-of-life treatment by themselves.^{21Legend symbol denoting Institute of Medicine of the National Academies (2014).} This leads to additional suffering caused by unwanted life sustaining treatment on one hand, and extra financial burden on both the families of patients and the government on the other. Reportedly, Medicare (i.e. the federal health insurance programme for elderly people aged 65 and above in the US) spent over one-quarter of its annual healthcare expenditures on patients at the final year of life.^{22Legend symbol denoting The percentage of Medicare expenditures spent on patients in their last year of life increased from 26.5% in 1994 to 27.9% in 1999. See Calfo et al. (2004).} To minimize invasive and futile treatments, the US has been a pioneer in promotion of ADs.  
• AD legislation in the US: California was the first state in the US to enact the Natural Death Act in 1976, allowing patients to exercise the right to make ADs. Most of other states enacted similar laws by the early 1990s.^{23Legend symbol denoting Massachusetts, Michigan, and New York chose to legislate only for appointment of substitute decision-makers, but advance directives can still be valid under common law. See Sabatino (2007).} At the federal level, the Congress enacted the Patient Self Determination Act ("PSDA") in 1991, requiring all health facilities (including hospitals and nursing homes) receiving public funds to inform adult patients of the right to make ADs upon their admission to such facilities.^{24Legend symbol denoting On top of that, the Act directed the Department of Health and Human Services to conduct a public awareness campaign for ADs and oversee compliance by health facilities. See Department of Health and Human Services (2008).}
• By and large, the statutory requirements of ADs in the US are broadly similar to ADs implemented as an administrative measure in Hong Kong, as discussed above. In short, it is a standard form with witness signatures, stating the applicable medical conditions under which ADs will take effect (i.e. terminal condition, permanent unconsciousness or loss of decision making capacity).^{25Legend symbol denoting While ADs in different formats may also be recognized, the statutory standard form is widely perceived as the safe way to ensure the validity of ADs. In addition, some states impose limitations on implementing the AD if the patient is pregnant. See Hannibal (2019) and Sabatino (2007).} Unlike Hong Kong, the AD laws in the US usually (i) allow persons other than doctors to be witnesses of ADs,^{26Legend symbol denoting Most states require two adult witnesses while the qualifications vary. Most commonly disqualified as witnesses are the appointed substitute decision-maker and the treating health care provider. See Sabatino (2007).} (ii) give doctors statutory immunity for complying with ADs, and (iii) allow patients to appoint surrogates to make decisions on refusal of treatment.^{27Legend symbol denoting Many statutory forms also cover donation of organs and designation of a primary doctor. See California Department of Justice (2019).}
• Effectiveness of AD legislation: It appears that ADs are well-received by the public in the US, on the back of the statutory status of ADs and strong public education. According to survey findings, as many as 37% of the adults in the US had already made ADs by 2017, tripling the corresponding figure of 12% in 1990 and the highest in the world. For the elderly population aged 65 and above, the penetration rate was even higher at above 50%.^{28Legend symbol denoting Government Accountability Office (2019) and Pew Research Centre (2006 and 2013).}
• However, there are still frequent disputes over execution of ADs in the US despite such legislation, partly because professional judgement of doctors is still required in each and every medical situation. Moreover, while preference of patients may change over time, understanding and cooperation of family members is needed.^{29Legend symbol denoting Department of Health and Human Services (2008) and Government Accountability Office (2015 and 2019).}
• POLST forms as a complementary measure: In view of the above issues, a new standard form named "Physician Orders for Life Sustaining Treatment" ("POLST") was introduced in Oregon in 1991, before spreading to all states with some variations. Compared with ADs, POLST forms have the following features:^{30Legend symbol denoting National POLST Paradigm (2019).}
  
  

  (a)	Relevance to the patient's current end-of-life conditions: A POLST form is signed by both the patient concerned at the end-of-life and the treating doctor or nurse, making it a real-life application (not a hypothetical situation in ADs);
  (b)	More specific and actionable instructions: The medical conditions in a POLST form are more specific on than those in an AD form, making it easier for doctors and emergency personnel to decide whether (i) to resuscitate the patient; (ii) to transfer the patient to the hospital or (iii) to do none of the above; and
  (c)	Increased applicability to emergency situation: As the POLST form is designed for all care settings (including medical emergency), many states in the US have revised their laws or codes of practice to allow emergency personnel to withdraw treatment based on instructions in the POLST forms. Some states have even introduced electronic systems for easy access to POLST forms by emergency personnel.31Legend symbol denoting Office of National Coordinator for Health Information Technology (2018).

• The rise of POLST forms seems to help those patients with terminal illnesses with less than a year of life to avoid unwanted treatment in hospitals, upon informed discussion with treating doctors. Based on a study in Oregon, as many as 94% of patients who specified "comfort measures only" in POLST could die in community (i.e. outside hospitals), much higher than those without POLST (66%).^{32Legend symbol denoting Oregon Health and Science University (2014).} However, POLST forms cannot replace ADs which are a common tool for the general public to plan for end of life care before a medical crisis occurs. As ADs and POLST are largely complementary in nature, most states in the US provide education to the community and healthcare workers on both forms.

Observations

• ADs in Hong Kong are implemented through administrative measures at present, while the legislative approach in the US provides more certainty to the legal status of ADs made by the general public on end-of-life care before medical crises. As a complementary measure in the US, POLST can meet the specific needs of terminally-ill patients due to the endorsement of treating doctors. Also, POLST provides legal immunity to paramedics for withdrawing resuscitation under emergency.

Prepared by Germaine LAU
Research Office
Information Services Division
Legislative Council Secretariat
6 June 2019