Assisted Decision-Making (Capacity) Bill 2013: Committee Stage (Resumed)

SECTION 67
Debate resumed on amendment No. 195:
In page 74, line 34, after "directive" to insert the following:
"other than a request for the provision or continuance of artificially delivered nutrition and hydration".
- (Senator Rónán Mullen).

It is well established in Irish case law that a person with capacity has the right to refuse all forms of treatment. The ward of court case found artificial nutrition and hydration are considered to be medical treatment as opposed to basic care, and, therefore, a person is entitled to refuse such treatment.

The provisions of the Bill allow a person to make treatment requests in their advance health care directive, which would, of course, include a request for artificial nutrition and hydration if they so wish. However, a person's autonomy is not absolute and he or she cannot demand that specific treatments or interventions be provided in all circumstances regardless of their effectiveness. The right to request treatment is a power to consent rather than a power to compel.

As outlined in the HSE’s national consent policy, a health care professional is not obliged to provide a treatment that is not clinically indicated. This is also in keeping with the Medical Council’s 2009 guidelines, which state that a clinician is not obliged to provide a treatment that he or she considers to be futile or disproportionately burdensome, even where such treatment may prolong the patient’s life. However, a treatment request in an advance health care directive is reflective of that person's will and preferences. Therefore, the provisions state that treatment requests outlined in an advance health care directive will be taken into consideration during the decision-making process, but will not be legally binding. In situations where a request for treatment in a person's advance health care directive is not upheld, the reasons for not complying must be recorded in that person's health care record. This reasoning must also be explained to that person's designated health care representative if he or she has nominated one.

Given that a request for any form of treatment cannot be legally binding, I cannot accept Senator Rónán Mullen's proposed amendment.

Amendment put and declared lost.
Government amendment No. 196:
In page 75, line 22, to delete “in accordance with subsection (6)” and substitute “referred to in subsection (6)(a)”.
Amendment agreed to.
Government amendment No. 197:
In page 75, line 29, to delete “subsection (6)” and substitute “subsection (6)(b)”.
Amendment agreed to.
Government amendment No. 198:
In page 75, line 38, to delete “(or the person signing on his or her behalf)” and substitute “or the person signing on his or her behalf,”.
Amendment agreed to.
Government amendment No. 199:
In page 76, line 34, to delete “step-child,”.
Amendment agreed to.
Government amendment No. 200:
In page 76, line 39, to delete “of the relevant person”.
Amendment agreed to.
Section 67, as amended, agreed to.
Amendments Nos. 201 to 203, inclusive, not moved.
Question, "That section 68 stand part of the Bill," put and declared carried.
SECTION 69
Government amendment No. 204:
In page 78, line 29, to delete “specific”.
Amendment agreed to.
Government amendment No. 205:
In page 78, line 31, to delete “the refusal” and substitute “the advance healthcare directive”.
Amendment agreed to.
Government amendment No. 206:
In page 78, line 33, to delete “specific”.
Amendment agreed to.
Government amendment No. 207:
In page 78, line 34, after “directive” to insert “and”.
Amendment agreed to.
Government amendment No. 208:
In page 78, line 35, to delete “the refusal” and substitute “the advance healthcare directive”.
Amendment agreed to.
Government amendment No. 209:
In page 78, line 39, to delete “an advance healthcare directive” and substitute “a refusal of treatment set out in an advance healthcare directive”.
Amendment agreed to.
Government amendment No. 210:
In page 78, line 41, to delete “if”.
Amendment agreed to.
Amendment No. 211 not moved.
Section 69, as amended, agreed to.
SECTION 70
Government amendment No. 212:
In page 79, lines 19 and 20, to delete all words from and including “shall” in line 19 down to and including line 20 and substitute “shall not be eligible to be a designated healthcare representative if—”.
Amendment agreed to.
Government amendment No. 213:
In page 79, to delete lines 27 to 32 and substitute the following:
“(d) the individual is—
(i) the owner or the registered provider of a designated centre or mental health facility in which the directive-maker resides, or
(ii) a person residing with, or an employee or agent of, such owner or registered provider,
unless the individual is a spouse, civil partner, cohabitant, parent, child or sibling of the directive-maker, or”.
Amendment agreed to.
Government amendment No. 214:
In page 79, lines 38 and 39, to delete all words from and including “subsequent” in line 38 down to and including line 39 and substitute “subsequent to the designation of an individual as a designated healthcare representative—”.
Amendment agreed to.
Government amendment No. 215:
In page 80, to delete lines 5 to 10 and substitute the following:
“(c) the individual becomes—
(i) the owner or the registered provider of a designated centre or mental health facility in which the directive-maker resides, or
(ii) a person residing with, or an employee or agent of, such owner or registered provider,
unless the individual is a spouse, civil partner, cohabitant, parent, child or sibling of the directive-maker,”.
Amendment agreed to.
Government amendment No. 216:
In page 80, to delete line 11.
Amendment agreed to.
Government amendment No. 217:
In page 80, line 16, to delete “directive-maker,” and substitute “directive-maker, or”.
Amendment agreed to.
Government amendment No. 218:
In page 80, between lines 16 and 17, to insert the following:
“(e) the individual is unable, for whatever reason, to exercise the relevant powers,”.
Amendment agreed to.
Government amendment No. 219:
In page 80, to delete lines 17 to 19 and substitute the following:
“that individual shall not, from the date on which he or she falls within any of paragraphs (a) to (e), be permitted to exercise relevant powers.”.
Amendment agreed to.
Government amendment No. 220:
In page 80, to delete lines 22 to 24 and substitute the following:
“(5) Unless otherwise provided in the advance healthcare directive, a designated healthcare representative shall not, with effect from the date on which an event specified in any of paragraphs (a) to (c) occurs or, in the case of an event specified in paragraph (d), at the expiry of the period referred to in that paragraph, be permitted to exercise relevant powers where the representative is the spouse of the directive-maker and—”.
Amendment agreed to.
Government amendment No. 221:
In page 80, to delete lines 36 to 38 and substitute the following:
“(6) Unless otherwise provided in the advance healthcare directive, a designated healthcare representative shall not, with effect from the date on which an event specified in paragraphs (a) or (b) occurs or, in the case of an event specified in paragraph (c), at the expiry of the period referred to in that paragraph, be permitted to exercise relevant powers where the representative is the civil partner of the directivemaker and—”.
Amendment agreed to.
Government amendment No. 222:
In page 80, to delete line 39 and substitute the following:
“(a) the civil partnership is annulled or dissolved (other than where the dissolution occurs by virtue of the parties to that civil partnership marrying each other) either—
(i) under the law of the State, or
(ii) under the law of another state and is, by means of that annulment or dissolution not or no longer a subsisting valid civil partnership under the law of the State,”.
Amendment agreed to.
Government amendment No. 223:
In page 81, to delete lines 3 to 6 and substitute the following:
“(7) Subject to section 2(2) and unless otherwise provided in the advance healthcare directive, a designated healthcare representative shall not, with effect from the expiry of the period referred to in this subsection, be permitted to exercise relevant powers where the representative is the cohabitant of the directive-maker and the cohabitants separate and cease to cohabit for a continuous period of 12 months.”.
Amendment agreed to.
Government amendment No. 224:
In page 81, to delete lines 7 to 9.
Amendment agreed to.
Section 70, as amended, agreed to.
SECTION 71
Government amendment No. 225:
In page 82, lines 7 and 8, to delete “invalidating the advance healthcare directive to the extent that it relates to” and substitute “prohibiting”.
Amendment agreed to.
Government amendment No. 226:
In page 82, line 8, after “representative” to insert “from”.
Amendment agreed to.
Government amendment No. 227:
In page 82, lines 19 and 20, to delete “(whether by reason of lack of capacity or otherwise) or declines to act,” and substitute “, for whatever reason, to exercise the relevant powers,”.
Amendment agreed to.
Government amendment No. 228:
In page 82, line 21, to delete “qualified” and substitute “eligible”.
Amendment agreed to.
Section 71, as amended, agreed to.
Section 72 agreed to.
SECTION 73
Government amendment No. 229:
In page 83, line 10, to delete “shall be guilty of” and substitute “commits”.
Amendment agreed to.
Government amendment No. 230:
In page 83, line 18, to delete “so shall be guilty of” and substitute “commits”.
Amendment agreed to.
Government amendment No. 231:
In page 83, lines 25 to 27, to delete all words from and including “a” where it secondly occurs in line 25 down to and including “disabilities,” in line 27 and substitute “a designated centre or mental health facility”.
Amendment agreed to.
Section 73, as amended, agreed to.
Section 74 agreed to.
SECTION 75
Government amendment No. 232:
In page 86, line 25, to delete “under section 58”.
Amendment agreed to.
Government amendment No. 233:
In page 86, to delete line 27 and substitute the following:
“(b) any decision-making order or decision-making representation order in respect of the directive-maker,”.
Amendment agreed to.
Government amendment No. 234:
In page 86, to delete lines 29 to 38, and in page 87, to delete lines 1 to 5.
Amendment agreed to.
Section 75, as amended, agreed to.
Section 76 agreed to.
SECTION 77
Question proposed: "That section 77 stand part of the Bill."

We will have an amendment to section 77 on Report Stage as we will be moving the decision support services from the Courts Service to the Mental Health Commission. People were thinking it was a little inappropriate to have them in the Courts Service.

Question put and agreed to.
SECTION 78

Amendments Nos. 235 to 238, inclusive, are related and may be discussed together.

I move amendment No. 235:

In page 88, between lines 18 and 19, to insert the following:

“(d) to provide information on the creation of an enduring power of attorney or the making of an advance healthcare directive to enable a person who has capacity to express his or her wishes to be given effect when he or she lacks decision-making capacity;”.

We were under the impression that we would be considering the Bill at 5.30 p.m., which might be the reason some of the other Senators are not here.

This amendment concerns the functions of the director of the decision support services under section 78. I have read about the functions and believe they are excellent. I would, however, like the Minister of State to consider adding to the legislation a function "to provide information on the creation of an enduring power of attorney or the making of an advance health care directive to enable a person who has capacity to express his or her wishes to be given effect when he or she lacks decision-making capacity". I would like this to be part of the remit of the decision support services, if possible.

The recommendation of the Council of Europe is that the State should promote self-determination for capable adults in the event of their future incapacity by means of continuing powers of attorney and advance health care directives. I acknowledge that the director is to be an informer, a manager, a supervisor, a guide and a changer, but the legislation could be a little more definite in that he or she could also be an educator. Bearing in mind the Council of Europe's recommendation on the promotion of human rights, I referred when discussing my first amendment, amendment No. 26, to the entitlement to lead one's life in an autonomous manner, which encompasses the taking of independent decisions. The recommendation sets out that member states should provide legislation to allow older persons to regulate their affairs in the event that they will be unable to express their instructions at a later stage.

I know there is nobody here but I have the ear of the Minister of State. The Acting Chairman is on the telephone.

I am sorry. I was just trying to advise Senators of the change in time which the Senator herself mentioned. She is addressing the Minister of State.

I was about to tell the House about the demographic profile.

Irish society must plan for population 80 and, in particular, have regard to the growing number of people whose capacities will decline as they age. It is necessary, therefore, for the State to facilitate people to plan individually for such an eventuality. The figures included in the national dementia strategy for 2004 suggest that in 2011 there were 47,800 people with dementia. It is believed 152,000 will have dementia in 2046. I am talking about the director being an educator in informing people about their capacity to express their wishes when they are well. This is not stated, although I acknowledge there is reference to the provision of information for relevant persons on the available options, but that is a different matter.

I advocate a national strategy associated with the Think Ahead programme that would involve all relevant organisations, State bodies and workers. It should be part of our lives. I would, therefore, like the Minister of State to consider the amendment.

While the director might find it internal to his or her job, it is not written down and it is important. It is all very well for people to make decisions while they are able, but it is different when they are not able. This amendment is to encourage people to make the decisions that link precisely into the Bill when they are able in order that their rights will be carried out when they are not able. The amendment has been tabled because the Bill could be more specific.

The Think Ahead programme is excellent and I assume and imagine that any person who takes up the job as director in this instance will draw on what already has been done as he or she would be foolish not to so do. Amendment No. 235 tabled by Senator Marie-Louise O'Donnell proposes an additional function for the director of the decision support service to provide information on the creation of an enduring power of attorney or advanced health care directives. These functions already are encompassed in the functions set out for the director. This is the reason that at the outset of the debate yesterday, the amendments were so comprehensive. I acknowledge it frustrated some Members but the amendments were comprehensive. Under section 78(1)(a), the director will be required to promote public awareness of all matters relating to the needs of persons who may require assistance in exercising their capacity. This function encompasses the requirement to provide information to the public on enduring powers of attorney and on advanced health care directives. Similarly, section 78(1)(c) requires the director to give information to relevant persons in respect of their options under the Act. This will include information on creating an enduring power of attorney or an advanced health care directive. As the function already is encompassed in the Bill, I ask the Senator not to press the amendment. While the Senator's points are well made, they are well covered in the Bill.

Amendment No. 236 proposes a new function for the director of the decision support service in providing information to organisations. The existing functions require the director to provide information and guidance for organisations when dealing with persons with capacity difficulties. The new amendment proposes that the decision support service also will have a role in informing and guiding organisations, including State organisations, when dealing with the range of interveners specified under this Bill. It will be obliged to provide information and guidance on dealing with attorneys, decision-making representatives, etc. The intention is that as a result of this information and guidance, organisations will know exactly when to provide information to interveners. This will help to ensure organisations only interact with interveners where those interveners are authorised either to seek information or to make decisions. I believe this point was well fleshed out in respect of the type of information, who should have it, what happens with it afterwards and for what it can be used.

Amendment No. 237 allows the decision support service to charge fees for its services. It is appropriate that the decision support service could have this possibility and is in line with international practice. Some functions it will undertake will be time-consuming and some organisations with which it will interact will be very wealthy as banks, for instance, are potential clients. Where a vulnerable person or a family has limited means, the possibility will be available for the fees to be waived. In amendment No. 238, Senator Marie-Louise O'Donnell proposes the director would have a role in enabling investigations of an attorney operating under provisions of the 1996 Act. I admire the Senator's foresight, as one amendment agreed to yesterday-----

I was about to thank the Minister of State for it.

I admire the Senator's foresight. The aforementioned amendment will allow both complaints to be made and investigations against attorneys registered under the 1996 Act. I thank the Senator for raising the issue. Another vitally important issue that was included in one of the amendments yesterday was the provision that the director can have an investigation even where no complaint was made. As the Senator and I are aware, it sometimes is the most vulnerable who do not have anyone to complain on their behalf or who cannot complain themselves. I believe the Bill covers the issues raised by the Senator and I am glad it does. I thank the Senator for having such foresight.

I am pleased that my proposed amendment in section 78 has been accepted, for which I thank the Minister of State. It is extremely important the supervisory and investigative functions of a director of the decision support service include the exercise of those functions in respect of attorneys under the 1996 Act. I had meant to thank the Minister of State for it. I also am pleased to note section 68 provides that a complaint may be made to the director in respect of an attorney under the 1996 Act who was acting outside the scope of his or her powers, not performing his or her obligations or for other reasons as stated in section 68. These are all important safeguarding provisions, as required under Article 12.4 of the UN Convention on the Rights of Persons with Disabilities. I thank the Minister of State and as to the remit, I understand a job is a job and is informative and educative. I would like to have sight of the education aspect. I am sure it will not just be the Think Ahead programme but there will be many other aspects.

Yes, that is just one programme.

I just mentioned that programme in so far as it is a guide for when people lack capacity. However, I understand, in respect of all the amendments, that it will be part of it and I thank the Minister of State for accepting my other amendment and for taking it on board in the spirit of the Bill.

I thank the Senator.

Amendment, by leave, withdrawn.
Government amendment No. 236:
In page 88, between lines 29 and 30, to insert the following:
“(h) to provide information and guidance to organisations and bodies in the State in relation to their interaction with decision-making assistants, co-decision-makers, decision-making representatives, attorneys and designated healthcare representatives,”.
Amendment agreed to.
Government amendment No. 237:
In page 89, between lines 1 and 2, to insert the following:
“(3) The Director, with the consent of the Minister, may, and if directed by the Minister to do so and in accordance with the terms of the direction, shall, prescribe by regulations the fees to be paid to him or her and when they fall due in respect of—
(a) the performance of functions,
(b) the provision of services, and
(c) the provision of information and guidance,
by him or her under the Act.
(4) Without prejudice to the generality of subsection (3), the Director’s power under that subsection to prescribe fees includes the power to provide for exemptions from the payment of fees, in different circumstances or classes of circumstances or in different cases or classes of cases.”.
Amendment agreed to.
Section 78, as amended, agreed to.
Amendment No. 238 not moved.
Section 79 agreed to.
Sections 80 and 81 agreed to.
SECTION 82

Amendment No. 239 is in the name of Senator David Norris.

May I raise the issue? I know that one cannot move the-----

The Senator may raise it in the debate on the section.

Amendment No. 239 not moved.
Government amendment No. 240:
In page 91, to delete lines 28 to 39 and substitute the following:
“(6) Subject to subsections (7) and (8), for the purposes of enabling the Director to perform his or her functions, he or she may direct a special visitor or general visitor to—
(a) at any reasonable time, examine and take copies of any health, personal welfare or financial record held in relation to a relevant person by any person, body or organisation, and
(b) interview a relevant person in private or otherwise than in public.”.
Amendment agreed to.
Government amendment No. 241:
In page 92, between lines 3 and 4, to insert the following:
“(8) Prior to taking an action pursuant to paragraph (a) of subsection (6), the special visitor or general visitor, as the case may be, shall seek the consent of the relevant person to the taking of such action, unless the Director dispenses with this requirement where—
(a) there has been a declaration under section 34(1)(b) in respect of the person, or
(b) an enduring power of attorney has been registered in respect of the person.
(9) A special visitor or general visitor shall not—
(a) attempt to obtain information that is not reasonably required for the purposes referred to in subsection (6), or
(b) use such information for a purpose that is not in accordance with this section.
(10) A special visitor or general visitor shall take reasonable steps to ensure that any information obtained pursuant to this section is—
(a) kept secure from unauthorised access, use or disclosure, and
(b) safely disposed of when he or she believes it is no longer required.
(11) The Director shall, on an annual basis, carry out checks to ascertain if special visitors and general visitors are complying with subsections (9) and (10).”.
Amendment agreed to.
Question proposed: "That section 82, as amended, stand part of the Bill."

I wish to raise the issue that is the subject of amendment No. 239 to allow Senator David Norris, if he wishes, to raise it on Report Stage. It is about a "person who, although not a registered medical practitioner, is, in the opinion of the Director, a person who has particular knowledge, expertise and experience of financial matters, as respects the capacity of persons". Obviously, it is up to Senator David Norris as to whether he wishes to proceed.

I thank Senator Jillian van Turnhout for her help. Does the Minister of State wish to respond or to defer?

I will respond on Report Stage if the Senator tables the amendment then.

Question put and agreed to.
SECTION 83
Government amendment No. 242:
In page 92, to delete lines 12 to 24 and substitute the following:
“(3) Subject to subsections (4) and (5), for the purposes of assisting a relevant person in relation to an application under Part 5, a court friend may—
(a) at any reasonable time, examine and take copies of any health, personal welfare or financial record held in respect of the relevant person by any person, body or organisation, and
(b) interview the relevant person in private or otherwise than in public.”.
Amendment agreed to.
Government amendment No. 243:
In page 92, between lines 26 and 27, to insert the following:
“(5) Prior to taking an action pursuant to paragraph (a) of subsection (3), the court friend shall seek the consent of the relevant person to the taking of such action, unless the Director dispenses with this requirement where—
(a) there has been a declaration under section 34(1)(b) in respect of the person, or
(b) an enduring power of attorney has been registered in respect of the person.
(6) A court friend shall not—
(a) attempt to obtain information that is not reasonably required for the purposes referred to in subsection (3), or
(b) use such information for a purpose other than provided for in that subsection.
(7) A court friend shall take reasonable steps to ensure that any information obtained pursuant to this section is—
(a) kept secure from unauthorised access, use or disclosure, and
(b) safely disposed of when he or she believes it is no longer required.
(8) The Director shall, on an annual basis, carry out checks to ascertain if court friends are complying with subsections (6) and (7).”.
Amendment agreed to.
Section 83, as amended, agreed to.
Sections 84 to 120, inclusive, agreed to.
SECTION 121
Amendment No. 244 not moved.
Question proposed: "That section 121 stand part of the Bill."

Senators have noted there may be issues around the financial powers of oversight and management by the court that the House might need to refer to on Report Stage.

Would the Senator repeat that, please?

There may be issues around amendment No. 244 which have not been put forward and which Senators might raise on Report Stage. I want to allude to them in order that they can be looked at on Report Stage.

Question put and agreed to.
Sections 122 to 128, inclusive, agreed to.
Amendment No. 245 not moved.
Section 129 agreed to.
Schedules 1 and 2 deleted.
Schedule 3 agreed to.
Title agreed to.
Bill reported with amendments.

When is it proposed to take Report Stage?

Report Stage ordered for Tuesday, 15 December 2015.

In accordance with the decision of the House, the Seanad shall meet at 10 a.m. on Friday, 11 December 2015.

The Seanad adjourned at 5.15 p.m. until 10 a.m. on Friday, 11 December 2015.