Supported decision-making in practice

  1. Adult guardianship laws tend to be focused on the big decisions where there may be significant consequences or risks to the person concerned, for example life-threatening decisions about medical treatment or living arrangements in residential care. It is important to recognise that the vast majority of care and welfare decisions that occur on a daily basis are far more mundane and involve informal and practical methods of support. For example, it is well recognised that opportunities for people to participate in decision-making improve their ability to communicate.344 The challenge is to include supported decision-making in everyday practice.

  2. The needs, life experiences and family context of people with disabilities can be diverse between and within population groups. Support needs for people with intellectual disabilities or acquired brain injuries may be very different, for example, to the needs of older adults. Older adults may be more isolated and tend not to have the support systems that those with psycho-social disabilities may have. There may be less support for their decision-making and more dependency, by, for example, a parent on their adult children who hold an enduring power of attorney (EPOA). A younger adult with Down syndrome may seek more independence to live away from their family. Conversely, an older adult with Down syndrome and early onset of dementia may have only lived in the family home with little outside interaction but be lovingly cared for by their siblings: here the family relationship is built around dependency.345

  3. Some people have no family to support them and, as is common in the Family Court, there are families that cannot agree or are incapable as a family group of providing appropriate support.346 Failing to recognise these differences could result in an over-simplified legal framework for respecting the rights of people with impaired capacity.
Patient-centred care and whakawhanaungatanga
  1. Supporting people in making decisions for themselves, where this is possible, and, if it is not possible, providing mechanisms to maximise their participation, has some real advantages. In the healthcare context, the inclusion of the person subject to the decision not only improves the quality of the decision reached but also reflects best practice, referred to as “patient- centred care”.347 Participative decision-making can have therapeutic benefits in terms of enhancing individual well-being and self-esteem. It can also reduce the possibilities of conflict between the person and healthcare professionals.348

  2. In New Zealand, health disparities between Māori and non-Māori are well documented. Māori are significantly over-represented in populations treated under the MH(CAT) Act and the approach used to assess “mental disorder” has potential for bias in assessing Māori.349 Similar biases may be present when assessing capacity under the PPPR Act or other areas of capacity law, such as fitness to plead under the criminal justice legislation. Elder and Tapsell highlight the current individual focus of capacity-based assessments and warn that this approach disregards the collective rights within whanau and the wider community.350

  3. Health practitioners are required to demonstrate appropriate levels of cultural safety351 and competency to be fit for practice.352  “Cultural competence” is broadly defined – extending beyond ethnicity and recognising that patients identify with multiple cultural groupings, including groupings with different belief systems and ideas about disability.353 An understanding of cultural competence provides a basis for applying supported decision- making in practice. There is current recognition that the “Western” model of patient-centred care is at odds with a traditional Māori way of viewing the world354 and that, if a broad view of culture is taken, then the majority of patients are culturally different from most health practitioners and from the dominant Western medical view of the world.355

  4. Medical students are now trained in applying a Māori-centred consultation approach for engaging with Māori patients, known as the “Hui Process” and the “Meihana Model,” two Māori-centred clinical interviewing tools.356 The Hui Process recognises whakawhanaungatanga in a clinical context (including where a capacity assessment might be undertaken), and the importance of the doctor establishing a cultural connection with the patient, thus distinguishing it from basic rapport.357

344 J Rosen, speech pathologist “Communication: the Keystone of Supported Decision-making” (Capacity Australia conference, Sydney, 13 November 2015).

345 These are common examples experienced in practice by the writer and reflect the importance of not making assumptions about diverse family relationships.

346 In New Zealand there is no public agency that fulfils this role and there is a shortage of people available to be an independent welfare guardian to assist families. An example is the Otago Welfare Guardian Trust. In Wellington a community trust has recently been established. For many years in Wellington the Catholic nuns, Sisters of Mercy, fulfilled this role for the Wellington Family Court.

347 AE Bauman, HJ Fardy and PG Harris “Getting it right: why bother with patient-centred care?” (2003) 179 Med J Aust 253.

348 Donnelly, above n 254 at 205 - 206.

349 Measures for Māori wellbeing in mental health can be assessed from a holistic viewpoint and take into account the dimensions of spiritual, mental and physical health, as well as relationships with family and community; M Durie “Measuring Māori Wellbeing” (New Zealand Treasury Guest Lecture Series (Hau Oranga), Wellington, 2006).

350 Elder and Tapsell, above n 342. The authors warn against using capacity to consent as a criterion for any revision of the MHA.

351 “Cultural safety” (whakaruruhau) was a concept developed by the late Irihapeti Ramsden and adopted by the nursing profession. See also B Gray “Managing the cross-cultural consultation. The importance of cultural safety” (2008) 35(2) NZFP.

352 Health Practitioners Competence Assurance Act 2003, s 118 (i).

353 These include (but are not limited to) gender, spiritual and other belief systems, sexual orientation, disability, lifestyle, age or socioeconomic status. The definition of cultural competence in the New Zealand Medical Council’s statement is: “Cultural competence requires an awareness of cultural diversity and the ability to function effectively, and respectfully, when working with and treating people of different cultural backgrounds." There is no similar professional standard of cultural competence for lawyers.

354 R Parry, B Jones, B Gray and others “Applying a Māori-centred consultation approach for engaging with Māori patients: an undergraduate medical student case study” (2014) 6(3) J Prim Healthc 254.

355 Parry, Jones, Gray and others, above n 354 at 254.

356 C Lacey, T Huria, L Beckert and others “The Hui Process; a framework to enhance the doctor-patient relationship with Māori“ (2011) 124 NZMJ at http://www.nzma.org.nz/journal/read-the-journal/all-issues/2010-2019/2011/vol-124-no-1347/view-lacey; S Pitama, T Huria and C Lacey “Improving Māori Health outcomes through clinical assessment: Waikare o te Waka o Meihana” (2014) 127 NZMJ 107.

357 Parry, Jones, Gray and others, above 354 at 255.

  1. Dr Greg Young, a non-Māori doctor, explains experience of whakawhanaungatanga when undertaking a capacity assessment with a Māori patient:358
    [Each] person at the meeting explained his ancestry in a brief but structured way, and Māori in the room were able to identify connections between their respective families. At the end, the Māori cultural advisor, rather kindly, explained to the patient and his support people that I, a European with English ancestry, was related historically through the wider Young family, to Nick Young, the cabin boy on the Endeavour who first spotted land when Cook came to New Zealand. Nick Young is remembered locally because his name is given to a cape – “Young Nick’s Head”. This process of identifying connections and relationships is vital to engaging Māori in the assessment, and in my experience it is very helpful to go through that process to some degree before getting into the technicalities of the assessment.
  2. Whakawhanaungatanga can therefore be viewed as providing a platform for supported decision-making, and for Māori is a baseline for culturally responsive practice.359 All of these factors suggest that any revised mental capacity law should recognise tikanga Māori decision- making processes, both at the level of legal principle and for implementation within a Code of Practice.360

  3. Balanced against these expectations is the practical reality of time and resource constraints in clinical practice of all professionals involved with health and social care. Effective “front- end” supported decision-making therefore requires a systems response to put best practice standards into effect.
Supported decision-making in English case law
  1. Principle 1(3) of the MCA provides:
    A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.
  2. There are few cases in the Court of Protection (COP) where this principle has been satisfied or clearly expressed in a judgment of the Court.361 Nonetheless, English case law demonstrates how supported decision-making can be applied within the existing legal framework of the MCA.
Supported decision-making at the beginning of the decision-making process
  1. In CC v KK,362 a local authority failed to prove that an elderly woman in its care did not have capacity to make decisions about her residence and care as they had not provided her with detailed options, including what support might be available at home, to allow a fair assessment of her capacity to weigh up those options. 363

  2. KK, who was aged 82, suffered from Parkinson's disease, vascular dementia and had a physical disability that meant she required a wheelchair or hoist to be mobilised. She was admitted to a nursing home but later wished to return home. KK gave evidence and was “clear and articulate” and “demonstrated an understanding of, and insight into, her care needs and the reality of life if she returned home, she was in need of total support and required carers 4 times a day”.364 Although KK did not currently understand the issues about her residence, she would be able to do so if given more information. So it was argued she should be enabled to make the decision, rather than the best interests test being used.

  3. Baker J held that when evaluating capacity there was a danger that professionals, including judges, might objectively conflate a capacity assessment with the best interests analysis and conclude that the person under review, KK, should attach greater weight to the physical security and comfort of a residential home and less importance to the emotional security and comfort derived from being in her own home. Baker J said: 365
    The choice which KK should be asked to weigh up is not between the nursing home and a return to the bungalow with no or limited support, but rather between staying in the nursing home and a return home with all practicable support.

358 Email communication with Dr Greg Young, (Consultant Psychiatrist, Capital and Coast DHB) regarding whakawhanaungatanga (11 March 2016).

359 Interview with Dr Jo Baxter, Associate Dean of Māori, University of Otago (A Douglass, Dunedin January 2016). There are calls for more training in cultural competency in psychiatry where Māori and non-Māori are working with whānau to develop understandings meaningful to Māori. See Elder and Tapsell, above n 342.

360 A first step towards providing a culturally responsive approach to supported decision-making is the Toolkit for Assessing Capacity as discussed in Chapter 7 and annexed to this report in Appendix D.

361 A Ruck Keene “Mental Capacity Newsletter” March, 2016, http://www.mentalcapacitylawandpolicy.org.uk/march-mental-capacity-law-newsletters.

362 CC v KK and STCC [2012] EWHC 2136 (COP).

363 See also the importance of providing information in the context of a patient’s capacity to refuse amputation of her leg, when there was “shifting medical opinion”: Heart of England NHS Foundation Trust v JB [2014] EWHC 342 Peter Jackson J at [24] and [25]. Discussed in Chapter 4 Defining Capacity.

364 The Code of Practice requires that each person whose capacity is under scrutiny must be given “relevant information” including “what the likely consequences of a decision would be (the possible effects of deciding one way or another).”

365 Ibid.

  1. This case demonstrates the need to place the person who is being supported at the front of the decision-making process. Capacity assessments should not start with a “blank canvas”.366 It requires all the information relevant to the decision to be made available to enhance the person’s capabilities to make the decision themselves.
Supported decision-making and substituted decision-making can coexist
  1. In Re M (best interests deprivation of liberty)367 the Court held that M lacked capacity to decide where to live but that it was in her best interests, despite very significant care needs that were being successfully cared for in a care home, to return to her home with a care package.

  2. M was aged 67 with chronic Type 1 diabetes and life-threatening complications. A central component in the decision was an appreciation of the risks arising from the lower level of supervision of her diabetes from a home placement compared with 24-hour professional oversight. Although finding that M lacked capacity, the court also carefully considered M’s wishes (and her partner’s views), plus the risks to her health of a return home compared to the risks of staying at the care home given her threats to kill herself (“I want to be out of here quick or dead”). Emphasis was placed on M’s own assessment of her quality of life.368 Mr Justice Jackson said: 369
    In the end, if M remains confined in a home she is entitled to ask ‘what for?’ The only answer that could be provided at the moment is ‘to keep you alive as long as possible’. In my view that is not a sufficient answer. The right to life and the state’s obligation to protect it is not absolute and the court must surely have regard to the person’s own assessment of her quality of life. In M’s case there is little to be said for a solution that attempts without any guarantees of success to preserve for her a daily life without meaning or happiness which she, with some justification, regards as insupportable. (Emphasis added)
  3. Substitute and supported decision-making can coexist. Even where a person lacks capacity in law, they do not lose their right to participate in decision-making that affects them. To this end, the standard by which the appointee, or substitute decision-maker is to act, requires them to support the person and take into account their will and preferences in reaching a decision.
Capacity is not an “off-switch” to rights and freedoms
  1. In Wye Valley NHS Trust v Mr B,370 the COP affirmed the right of an individual to refuse life- saving treatment, even though he lacked capacity as a result of mental illness marked by religious delusions. Mr B suffered from Type 2 diabetes but resisted medication for a chronic foot ulcer and developed gangrene in his leg. Without an amputation, the medical evidence suggested he would succumb to an overwhelming infection and die within days. When it came to an assessment of Mr B’s best interests, the judge met with Mr B. Mr Justice Jackson came to the clear conclusion that an enforced amputation would not be in Mr B’s best interests:371

    This is not an academic issue, but a necessary protection for the rights of people disabilities. As the Act and European Convention make clear, a conclusion that a person lacks decision-making capacity is not an 'off-switch' for his rights and freedoms. To state the obvious, the wishes and feelings, beliefs and values of people with a mental disability are as important to them as they are to anyone else, and may even be more important. (Emphasis added)

366CC v KK, above n 362 at [68].

367 Re M (Best Interests: Deprivation of Liberty) [2013] EWHC 3456 (COP) Peter Jackson J.

368 Re M, above n 367 at [41]. Peter Jackson J noted that there was no criticism of the care received by M or the local authority and that, “it was perfectly appropriate that the responsibility for the outcome should fall on the shoulders of the court and not the shoulders of the parties”.

369 Re M, above n 367 at [38].

370 Wye Valley NHS Trust v Mr B, above n 171.

371 Wye Valley, above n 171 at [38].

  1. Human rights considerations therefore make it clear that the "best interests", as a standard fr decision-making, is broader than a paternalistic assesment of what a third party thinks would be best for the person. A finding that a person lacks capacity does not negate their legal agency and the right to have their will and preferences respected.
Supported decision-making — summary
  1. The CRPD requires State parties to rethink domestic laws and engage with its key concepts. To this end, the countries of the United Kingdom, Ireland, Canada and Australia have actively commissioned reports and/or have Bills before Parliament in order to meet their compliance obligations with the CRPD.372 By ratifying the CRPD, New Zealand undertook to adopt all appropriate legislative, administrative and other measures for the implementation of the rights recognised in it. These obligations necessitate a critical review of the mental capacity laws in New Zealand and a careful assessment of the applicability of international law in this context.

  2. The CRPD offers new ways of thinking about capacity, particularly in its emphasis on supported decision-making as a more integrated approach to decision-making, and recognition of universal legal capacity. Supported decision-making recognises the importance of relationships in understanding autonomy.

  3. Challenges for establishing legal frameworks in line with the CRPD include: the lack of a clear definition of what supported decision-making means in law, which has led to conceptual confusion; uncertainty as to its connection to the concept of legal capacity; and doubts about the extent to which legal frameworks substitute decision-making and the modern notion of supported decision making can coexist. There are many forms of support for decision-making: family, friends and civil society networks which exist outside and quite independently of the law.373 As a consequence, there is a risk of “net widening” (expanding, not reducing paternalism) by over-legalising informal mechanisms of support.

  4. A number of comparable common law jursidictions have decided to make specific provision for supported decision-making.374 More research is urgently needed to determine the extent to which supported decision-making processes achieve their goals, and the conditions in which they are likely to do so.375 In New Zelanad, policymakers should considere how supported decision-making could reduce the role of guardiansip, how mental capacity could be assessed in this framework, and how supported decision-making appraches could be inegrated into the law.

  5. The CPRD might simply be viewed as aspirational. Nonetheless, it has prompted discussion and debate about how to delvier support mechanisms under art 12, while at the same time ensuring protections from abuse.376 Fudamentally, it raises the issue of the role of the law, and the extent to which law can contribute to this shift in thinking by translating supported decision-making principles into workable laws.377

372 See for example: a review of Canadian supported decision-making legislation by Bach and Kerzner, above n 33; England’s review of the Mental Capacity Act, above n 314; Australia’s Law Reform Commission report, above n 264; and the website of Inclusion Ireland http://www.inclusionireland.ie/capacity on the passage of the Assisted Decision-Making Act 2015. Canadian examples include: the British Columbia’s Representation Agreement Act – personal planning tools that enable adults to appoint someone to help the adult make decisions [http://www.bclaws.ca/civix/document/id/complete/statreg/96405_01] Manitoba, Yukon Territories and Alberta legislation all specifically recognise supported decision-making. Ontario’s Substitute Decisions Act does not specifically recognise supported decision-making, but does provide for consideration of the role of supports [http://www.ontario.ca/laws/statute/92s30].

373 Carney, above n 248 at 39.

374 A number of these jurisdictions have been considered in the context of supported decision-making and best interests in the current English Law Commission report, above n 199.

375 NA Kohn, J Blumenthal, A Campbell “Supported decision-making: A Viable Alternative to Guardianship?“ (2012) 117 Penn State Law Rev 1111.

376 Bach and Kerzner, above n 33 at 37.

377 Carney, above n 273.

  © 2020 Alison Douglass