LCQ15: Advance directives in relation to medical treatment

     Following is a question by Dr the Hon Chiang Lai-wan and a written reply by the Acting Secretary for Food and Health, Dr Chui Tak-yi, in the Legislative Council today (May 22):
 
Question:
 
     An advance directive in relation to medical treatment (advance directive) is a statement (usually in writing) in which a person indicates, when he is mentally competent to make decisions, the form of health care he would like to receive in case he is no longer competent to make decisions. The Law Reform Commission of Hong Kong (LRC) published a report in 2006 putting forward a number of recommendations regarding advance directives, including the one that the person making an advance directive may specify that he does not agree to receive any life-sustaining treatment if he is in any of the following three conditions: being (i) terminally ill, or (ii) in a state of irreversible coma, or (iii) in a persistent vegetative state. The Hospital Authority (HA) formulated a guidance note and prepared a model form on advance directives in July 2010 for patients' reference. Besides, it was mentioned in the 2018 Policy Address that the Government would consult the public in 2019 on arrangements of advance directives and the relevant end-of-life care. In this connection, will the Government inform this Council:
 
(1) whether it knows (i) the number of valid forms on advance directives received, and the number of cases in which the advance directives as set out in the forms were executed, by healthcare workers in public hospitals, and (ii) the number of patients in public hospitals who produced to healthcare workers advance directives that were not made in accordance with the model form (e.g. advance directives signed under the witness of private doctors), in each year since July 2010;
 
(2) whether it knows if HA has established a registration system for advance directives; if HA has not, of the reasons for that;
 
(3) when the Government will launch the public consultation on advance directives and the relevant end-of-life care, and the timetable for the consultation exercise;
 
(4) whether the Government will make reference to the Patient Right to Autonomy Act in Taiwan and stipulate the following two kinds of conditions of patients as the conditions under which advance directives will become operative: (i) suffering from severe dementia, and (ii) other announced disease conditions of patients or sufferings being unbearable, the disease being incurable and there being no other appropriate treatment options available given the medical standards at the time of the disease's occurrence; and
 
(5) of the resources allocated in each of the past 10 years by the Government to the research and promotion of advance directives as well as life and death education, and the details thereof?
 
Reply:
 
President,
 
     Under the common law, a patient may, while mentally competent to make decisions, give advance directives (ADs) to specify that apart from receiving basic and palliative care,  he/she chooses not to receive any life-sustaining treatment or any other treatment he/she has specified when he/she is in a serious irreversible situation, such as terminally ill, in a state of irreversible coma or in a persistent vegetative state, allowing healthcare professionals to withhold or withdraw futile treatment under specific conditions, which merely postpones his/her death.
 
     The concept of ADs is based on the principle of self-determination by patients, sparing healthcare professionals, the patients' relatives, or both, making difficult healthcare decisions on the patients' behalf, in particular decisions of withholding or withdrawing life-sustaining treatment. In this regard, the Code of Professional Conduct for the Guidance of Registered Medical Practitioners formulated by the Medical Council of Hong Kong has provided guidelines on care for the terminally ill. Where death is imminent, it is the doctor's responsibility to take care that a patient dies with dignity and with as little suffering as possible. When a doctor determines that the treatment for a terminally ill patient is futile, it is legally acceptable or appropriate to withhold or withdraw life-sustaining procedures taking into account the best interest of the patient and the preferences of the patient and his/her family.
 
     My reply to the various parts of the question raised by Dr the Hon Chiang Lai-wan is as follows:
 
(1) and (2) The Hospital Authority (HA) formulated a guideline together with standardised form on ADs in July 2010. Since August 2012, the Clinical Management System (CMS) has marked the ADs witnessed by HA's doctors as a reminder to assist clinical communication. Currently, doctors can set a reminder on CMS when a patient signs an AD including "Do Not Attempt Cardiopulmonary Resuscitation" in HA, to inform other healthcare professionals that the patient has signed an AD. The number of ADs signed by HA's patients each year since August 2012 is as follows:
 

     HA does not maintain the number of valid AD forms received and the number of cases in which the ADs as set out in the forms were executed. In addition, HA also does not maintain the number of patients in public hospitals who produced to healthcare professionals ADs that were not made in accordance with HA's model form (e.g. ADs signed as witnessed by private doctors).
 
(3) To allow terminally ill patients more options of their own treatment and care arrangements, the Government will consult the public in the second half of 2019 on arrangements of ADs and relevant end-of-life care.
 
(4) The ADs of HA currently cover (a) terminally ill; (b) in a persistent vegetative state or a state of irreversible coma; or (c) in other specified end-stage irreversible life limiting condition, which includes patients with irreversible loss of major cerebral function and extremely poor functional status, end-stage renal failure, end-stage motor neuron disease, end-stage chronic obstructive pulmonary disease, etc.  Therefore, patients suffering from severe dementia are covered in (c).
 
     Regarding "other announced disease conditions of patients or sufferings being unbearable, the disease being incurable and there being no other appropriate treatment options available given the medical standards at the time of the disease's occurrence", if the concerned situation is an "end-stage irreversible life limiting condition", then it is also covered in (c) above.
 
     The Government and HA will continue to monitor international trend, take into account the needs of patients and engage stakeholders, to review the application of ADs with an open mind.  The public consultation on arrangements of ADs and relevant end-of-life care in the second half of this year will cover the related issues.
 
(5) The Education Bureau (EDB) attaches great importance to life and death education by enhancing students' comprehension of different stages of life and experiences as well as promoting the positive values of cherishing and respecting life.  EDB provides continuous curriculum support to schools, including choosing appropriate "life events" themes to produce teaching plans and worksheets, such as "Filial piety shown in grave sweeping in Ching Ming Festival" and "I know how to reflect on the meaning of life", to encourage discussion and sharing among teachers and students, and enhance students' understanding of related topics.  EDB also conducts teacher professional development programmes and establishes learning communities to advance teachers' relevant knowledge and skills.  Since the expenditure and manpower on developing curriculum, learning and teaching resources along with conducting professional development programmes are subsumed under the recurrent expenditure of EDB, a breakdown of expenditure is not available.
 
     The Elderly Health Service (EHS) of the Department of Health also conducts health talks for elderly persons and their carers on ageing, life and death education and bereavement at residential care homes for the elderly, elderly centres, and the Elderly Health Centres through its multi-disciplinary team of nurses and allied health professionals. From 2009-2018, a total of 1 680 health talks related to these topics were conducted. The expenditure for these activities are covered by the overall provision of the EHS, a breakdown of expenditure is not available.
 
     As mentioned above, HA formulated a guideline together with standardised form on ADs in July 2010.  Such information has been made available on the Internet for access by the public.  However, HA does not keep count of resources allocated to the research and promotion of ADs.