NDA submission to the Department of Health on the Scheme of Legislative Provisions to provide for the making of Advance Healthcare Directive 2014 Introduction 7 March 2014 The National Disability Authority (NDA) welcomes publication of the draft General Scheme of Legislative Provisions to provide for the Making of Advance Care Directives. The Scheme reflects the principles of autonomy and selfdetermination contained in the Assisted Decision Making (Capacity) Bill 2013 and the UN Convention on the Rights of Persons with Disabilities. The NDA is of the view that Advance Care Directives are important instruments for a person s healthcare/mental healthcare planning, recovery and treatment, including end-oflife treatment. Specific Questions for Consultation The Department has requested that submissions contain views in relation to 11 specific questions. The NDA s views under are outlined below under each question. 1. What are your views on requiring an individual to obtain professional advice (e.g. clinical and/or legal) before preparing an advance healthcare directive? A person making an Advance Care Directive should be encouraged to discuss their intentions with a healthcare professional as far as possible, so that they understand the implications of refusing certain treatments, some which may result in death. A healthcare professional should be defined in the Bill in a general way to reflect the broad range of people that a person is in contact with and may wish to consult with in making an Advance Care Directive. If the person intends nominating a patient-designated healthcare representative in their Advance Care Directive to make end of life treatment decisions on their behalf when they lose capacity, consultation may help them better understand the implications, risks and how best to express it in the Directive to prevent ambiguity about the authority of the representative arising. Making it obligatory to consult a healthcare professional in order to make an Advance Care Directive would however, be difficult to implement in practice due 1
to the different personal circumstances of persons. For example, persons not receiving healthcare and not in contact with a healthcare professional or by choice, would be prevented from making a valid Advance Care Directive if prior consultation with a healthcare professional were obligatory. The Code of Practice to be prepared should provide as much guidance as possible on making an Advance Care Directive, including the benefits of consulting with a healthcare professional to help the person make an informed decision. The Code of Practice should contain guidance on what constitutes basic care, life sustaining treatment and artificial life sustaining treatment so that a person is clear on what treatment they can refuse in their Directive (e.g. artificial life sustaining treatment) and what treatment they cannot (i.e. basic care). This will help inform the person making a Directive about how much authority to confer and in which areas on a representative. The Code of Practice might also include guidance for health care professionals around raising the issue of advance care directives with their patients in appropriate circumstances for example, with elderly patients or those diagnosed with progressive conditions that could give rise to diminished capacity to make decisions in the future. 2. Is it necessary for the provisions to designate a specific, mandatory time period within which an advance healthcare directive must be reviewed (e.g. every 2 years, every 5 years, every 10 years)? There are clear benefits to reviewing and updating an Advance Care Directive at various intervals so that it reflects changes in the person s circumstances and changes in their view of treatments previously refused in their Directive. There would also be benefits for healthcare professionals as Advance Care Directives made many years ago and not updated since may, in some cases, be difficult for healthcare professionals to apply or interpret. However, the risk in making reviews obligatory would be that persons who, for whatever reason, do not review or decide not to review their Advance Care Directive at the required intervals, would have their Directive rendered invalid. Furthermore, in line with the key principles of autonomy and self-determination, underpinning the Scheme of Bill, it could be argued that the person should have the right to decide whether to review their Advance Care Directive or not rather than being obliged to do so. It is worth noting that persons who have made a will or an enduring power of attorney agreement are not required to update them at certain intervals so obliging people to review their Advance Care Directive would be out of step with current legal requirements in related areas. There are however, a number of ways in which persons could be positively encouraged to review their Advance Care Directive. If the Office of the Public 2
Guardian is charged with the function of setting up and maintaining a register of Advance Care Directives which could be provided for in Section 56 of the Assisted Decision Making (Capacity) Bill 2013 - it could be proactive in reminding persons, at certain intervals, of the benefits of reviewing their Advance Care Directive. The Code of Practice to be developed under the Scheme should also advise persons on the benefits of reviewing an Advance Care Directive at different intervals. Healthcare professionals could also have a role here. When the person confirms that they have an Advance Care Directive, the healthcare professional could remind them of the benefits of updating it. This could be provided for in the Code of Practice for healthcare professionals. 3. Should a standard format be developed for advance healthcare directives? There are benefits to specifying a core set of questions in an Advance Care Directive Model Form that people could opt to answer. The intention would be to get people to give as much clarity as possible on the types of treatments they want and do not want, even if the latter results in their death. There are examples from court cases that Advance Care Directives which are a general expression of a person s wishes and preferences can result in problems in applying and interpreting them when the person loses capacity and requires treatment 1. Providing as much clarity as possible in the Directive should, in principle, reduce reliance on the patient-designated healthcare representative decision-maker, where one is appointed, to interpret the person s wishes, or recourse to the High Court for a determination. While an Advance Care Directive Model Form could contain a core set questions to be answered if the person chooses, the person should also have the right to choose not to answer them without rendering the Form invalid. The Code of Practice could contain the Model Form as a template for making a Directive in order to guide people on what a clear and unambiguous Directive would look like. Alongside closed (yes/no) core questions, the Model Form could also contain a second section with more open-ended questions. This would allow the person a large degree of flexibility in recording their wishes, preferences and intentions on refusal of treatment. While it would be preferable that the Model Form would be used, the Code of Practice should make clear it that the person is entitled to use a different format if they so choose. Striking the balance between attempting to get as much clarity as possible on treatment decisions using core 1 Most recently, the Bentley v. Maplewood Senior Care Society 2014 BCSC 165 case in British Columbia highlighted the ambiguity and uncertainty that can result from a person not indicating in their Advance Care Directive whether they wanted nourishment or hydration. 3
questions in a Model Form while also allowing the person enough flexibility and scope to include what information they would like to see contained in their Directive, would seem to be the best approach. 4. If a standard format for advance healthcare directives was developed, what information should it contain? A working group with the required expertise, including non-medical, should be set up to draft an Advance Care Directive Model Form. 5. Where should advance healthcare directives be kept to ensure that their existence is known about and they can be readily accessed when required? The Scheme should require the Office of the Public Guardian to set up a register of Advance Care Directives, similar to the registers for other decision-making arrangements as provided for under Section 56 of the Assisted Decision-Making (Capacity) Bill 2013. Healthcare professionals providing healthcare and/or administering treatment to a person- who has lost capacity- would be able to check the register to establish whether the person has registered a Directive and if so, to view its content. Setting up an online register of Directives, administered by the Office of the Public Guardian, would the best option as in the case of emergency situations, the healthcare professional would need to have access to a Directive as quickly as possible. The Code of Practice should provide guidance on the benefits of registering an Advance Care Directive. As part of its awareness raising function under the Assisted Decision Making (Capacity) Bill 2013, the Office of the Public Guardian or other appropriate public agency could launch periodic public campaigns to raise awareness about the benefits of both making and registering an Advance Care Directive. However, some people may choose, for whatever reason, not to register their Directive with the Office of the Public Guardian. This should not impact on the validity of their Directive. 6. What additional measures could be included in the provisions to ensure that healthcare professionals are made aware that an individual has prepared an advance healthcare directive? The Code of Practice should advise all healthcare professionals involved in the healthcare and treatment of persons that they should, as standard practice, ask all persons whether or not they have an Advance Care Directive and where it 4
can be located if needed in the future. This information should be recorded in the person s medical record. This practice should also be followed by service providers in intellectual disability services as part of the person centred planning approach. 7. The provisions enable an individual to make a legally-binding refusal of treatment in an advance healthcare directive, however, requests for treatment in such directives will not be legally-binding. What should be done to ensure that such treatment requests, while not legally-binding, are adequately considered during the decision-making process? The Code of Practice should contain guidance for healthcare professionals on the process to be followed in considering requests for treatment. Guidance would cover how they should approach the requests, what they need to consider, what they need to take on board in reaching a decision, how they should weigh up the request for treatment against the resources of the hospital/treatment centre, who they should consult etc. Training for healthcare professionals on applying the law and implementing the Code of Practice would be important. 8. Given that advance healthcare directives relating to mental healthcare and treatment are intended to be used on a recurring basis, as opposed to advance healthcare directives for general healthcare which are predominantly used once, should a different format be used for both types of directive? As mentioned earlier, the NDA recommends that a single Model Form be developed and designed in a way to cater for all persons receiving health/mental healthcare so that they are treated on an equal basis. The proposed working group would develop a Model Form to reflect this. 9. What do you think the role of the patient-designated healthcare representative should be? Should the representative s role be limited to that of interpreting the individual s advance healthcare directive? Should the representative have a broader role to advise as to what the individual s will and preferences regarding treatment are likely to be? It is the person who should decide how much decision-making power to delegate to their nominated patient-designated healthcare representative. The Bill should set out the different functions that a patient-designated healthcare representative can carry out. The Bill could also set out the default role to apply in cases where the advance care directive does not specify whether the intended role was to 5
interpret the Directive only, or whether it extends to making treatment decisions. In the case where a person s Advance Care Directive does not provide sufficient clarity about their treatment choices and refusals when the person has lost capacity and requires treatment, the nominated patient-designated healthcare representative will have an important role to play. They can help the healthcare professional in interpreting the person s Directive and in cases where this is not possible, they may be able to advise on what the person s will and preferences may be based on their relationship with the person and knowledge of their past will and preferences. If the healthcare professional is not satisfied with the interpretation or the advice offered, or has suspicions, they can have recourse to the High Court for a determination. The Code of Practice should provide guidance for the patient-designated healthcare representative on interpreting and establishing the person s wills and preferences. It should also contain guidance for healthcare professionals on communicating with and being advised by the patientdesignated healthcare representative, how to deal with lack of agreement with the patient-designated healthcare representative and what to do if there are suspicions about the patient-designated healthcare representative s interpretation or view of the person s wills and preferences. 10. What additional safeguards may be required in relation to the provisions for the patient-designated healthcare representative to protect the individual who made the advance healthcare directive and to ensure that the representative carries out his/her wishes? As it will be the healthcare professional/s in a hospital or similar setting who will ultimately make the decision about the person s treatment, including end of life, this will act as a natural safeguard against a patient-designated healthcare representative acting against the wishes of the person for their own personal gain. This distinguishes it from an enduring power of attorney under the Assisted Decision-Making (Capacity) Bill 2013 who, in a range of non-healthcare treatment areas, can make the decisions about the person s welfare and property. Even in cases where an Advance Care Directive specifically delegates end of life treatment and artificial life sustaining treatment decision-making power to the representative, the healthcare professional can still question the representative and if s/he suspects that the person conferred such power to the representative under duress, the Code of Practice will clarify what courses of actions are open to the healthcare professional, how they should proceed and when they should have recourse to the High Court to make a determination. On the other hand however, a healthcare professional should not refuse to recognise the legitimate, clear and unambiguous decision-making power conferred on a representative by 6
a person in their Advance Care Directive and should carry out the treatment decided by the representative. 11. Are there any other issues relating to advance healthcare directives that should be included in the legislative provisions? Persons in an Assisted Decision-Making Arrangement under the Assisted Decision-Making (Capacity) Bill 2013 The Code of Practice should clarify the type of decisions and treatments a person being supported by a decision-making assistant, as provided for under the Assisted Decision Making (Capacity) Bill 2013, should be able to make. For example, a person with a moderate intellectual disability could, with appropriate support and information, be enabled to make their own healthcare decisions in certain circumstances (e.g. whether to opt for a particular cancer treatment or take a particular medicine). Involuntary patients The Scheme of Bill allows for the making of Advance Care Directives by persons with capacity in relation to mental healthcare treatments that they wish and do not wish to receive. This refers to voluntary patients but excludes those involuntarily detained and being treated under Part 4 of the Mental Health Act 2001 and/or whose treatment is regulated under the Criminal Law Insanity Act (2006). In its submission of October 2011 on the Review of the Mental Health Act, the NDA advised the following: People with mental health difficulties should be facilitated by legislation to make advance health care directives providing for what is to happen in future situations where they lack capacity to make decisions relating to their health care. In this way their will and preferences and right to autonomy, expressed when they retained capacity, may be respected at a stage when they lack capacity and are found to require treatment (p.5) 2 2 The NDA s full submission can be located on its website at: http://www.nda.ie/website/nda/cntmgmtnew.nsf/0/5d48197a91a2c5be8025793d00470f92?opendocument 7
The benefits to persons with mental health problems in making an Advance Care Directive are also outlined in Amnesty International Ireland s submission on a review of the Mental Health Act 2001 3 : because of the episodic nature of many mental health problems, many people become experts in their own care, in the sense that they know what works and what does not work for them in a time of crisis. Advance directives provide a mechanism to harness patient expertise and thereby improve decision-making quality in mental health care. The negotiation of a joint crisis plan demands a dialogue between the individual and the mental health professionals, which can have a positive effect on the therapeutic relationship and can result in reduced involuntary admissions in patients with severe mental health problems (p.10). According to the U.S. National Alliance on Mental illness, the use of advance directives for psychiatric decision making is in its infancy. However, laws specifically authorising psychiatric advance directives have been enacted in twelve states in the U.S. 4. All of these laws establish the right of persons with mental illnesses to write directives, when competent, indicating their wishes concerning acceptance or refusal of psychiatric treatment. Some of these laws (e.g. Alaska and Oregon) apply only to written declarations concerning inpatient psychiatric treatment, psychotropic medications, and ECT. Others apply more generally to all forms of psychiatric treatment 5 The NDA advises that the current exclusion of involuntary patients from the Scheme needs to be revisited as the person s status as an involuntary patient would seem to render an Advance Care Directive, made when they had capacity, invalid. This blanket approach would reflect a status approach to the treatment of persons lacking capacity and would not be in line with the functional approach in the Assisted Decision-Making (Capacity) Bill 2013 and the UN Convention on the Rights of Person with Disabilities. When an involuntary patient, irrespective of them having capacity or not, requires treatment for a healthcare issue not related to their detention and treatment (e.g. for cancer or diabetes), then the healthcare professional should 3 Amnesty International Ireland, Mental Health Act 2001: A Review. Summary Paper. Dublin. 4 The first law authorizing psychiatric advance directives was enacted in Minnesota in 1991. Alaska, Hawaii, Idaho, Illinois, Maine, North Carolina, Oklahoma, Oregon, South Dakota, Texas and Utah have since followed suit. 5 Ronald S. Honberg, National Director for Policy and Legal Affairs, National Alliance on Mental Illness: http://www.nami.org/content/contentgroups/legal/advance_directives.htm 8
be obliged to follow a valid Advance Care Directive made by the person when they had capacity. Where an involuntary patient has a valid Advance Care Directive made some years ago which states that they do not want a treatment provided for under Part 4 of the Mental Health Act 2001, then an issue arises. If the consultant psychiatrist considers that the treatment needs to be given in order to safeguard the life of the patient or prevent them doing harm to others, then the NDA agrees that an Advance Care Directive can be overridden in these circumstances. If however, a person s Advance Care Directive provides for refusal of a treatment provided for under Part 4, and not administering the treatment would not result in the person causing harm to themselves or others, the patient s wishes would not be respected under the current draft. If the person no longer has capacity and may not be in position to refuse the treatment, they would be particularly vulnerable. In this case, the NDA recommends that the consultant psychiatrist should be obliged to refer the case to a Mental Health Tribunal for a determination. Additional/appropriate expertise should be added to Tribunal to make decisions on these matters. This safeguard would be along the lines of the provision in Scheme where the High Court is to be called upon to make a determination where a woman has stated in a valid Advance Care Directive that she does not want a treatment, including life sustaining treatment, even if she falls pregnant and understands that refusing such treatment would harm/end the life of her unborn child. If she then falls pregnant, the High Court will be called upon to make a decision on treatment. Key provisions in the Scheme that apply to all persons with a valid Advance Care Directive should also apply to involuntary patients with a valid Advance Care Directive. The Scheme states that while all requests for treatments will not be legally binding, regard should be had to the wishes expressed by the person in their Directive. This should also apply to involuntary patients, even where after the review process by a Tribunal results in a decision to administer the treatments refused by the person in their Directive. The Code of Practice should contain guidance for treating consultant psychiatrists under Part 4 of the Mental Health Act on the procedure to be followed if the person has a valid Advance Care Directive. Where an involuntary patient with capacity expresses a wish to make an Advance Care Directive, they should be facilitated and supported to do so. The Code of Practice should provide guidance on how this should be done and what steps the treating consultant would be obliged to follow. Evidence from a randomised controlled trial carried out in two acute psychiatric services in inner London where patients being compulsorily detained and treated were supported to make 9
a written advance directive, showed that there were benefits for the patients 6. While the making of a Advance Care Directive did not reduce numbers of compulsory readmissions within one year of discharge, the authors saw the benefits of agreeing a treatment plan for psychiatric patients in remission in the event of future loss of mental competence and that such planning could form part of a relapse prevention programme. Other findings were that it can be difficult to convince clinical staff of the importance of patients advance directives and the underfunding and high workloads of community mental health teams militate against the routine use of advance directives. Advance Care Directives to be made in writing The Scheme states that Advance Care Directive must be made in writing. The Bill should clarify that other forms of making of Directive would be valid as some persons, due to a disability, may not be able to write themselves. In British Columbia, someone can sign on behalf of the person if they are unable to sign and the signer cannot be a witness to the making of the Advance Care Directive. Another option could be an independently witnessed video recording of the person communicating their treatment preferences and refusals. Witnessing in Emergency situations The NDA advises that in an emergency situation where a person with capacity verbally communicates their care and treatment, preferences and refusals, it should, where possible, be witnessed by two healthcare professionals who should also witness its recording in the person s medical records. Clarifications required The NDA would welcome clarification on the following in the Bill: Unwritten Advance Care Directive - If a person appoints a patientdesignated healthcare representative in an emergency situation where it is not practically possible for the person to make a written document, will this constitute a valid conferral of decision-making power? If so, does it have to be documented in the person s medical record for it to be considered valid? 6 Papageorgiou, R., King, M. et al, Advance directives for patients compulsorily admitted to hospital with serious mental illness, The British Journal of Psychiatry (2002), 181:513-519. 10
Revoking an Advance Care Directive Would the burden of proof be on a patient-designated healthcare representative who claims that the person had verbally revoked their written Directive to them? The Code of Practice should provide guidance on verbally revoking an Advance Care Directive. Cross-over between witnesses and patient-designated healthcare representative - It is unclear in the Scheme whether a witness to the making of an Advance Care Directive can be nominated to act as a patientdesignated healthcare representative Those prohibited from being a patient-designated healthcare representative The NDA would welcome clarification on whether those prohibited will mirror those prohibited in the Assisted Decision-Making (Capacity) Bill 2013 from being a decision-making representative, co-decision making, enduring power of attorney and representative decision-makers (i.e. not only those in certain roles/positions but also those who have committed certain offences/crimes). 11