Removing Barriers to Equal Access to End-of-Life Care for Gay, Lesbian, Bisexual, Transgender & Intersex People: Respecting Legal Rights Professor Colleen Cartwright Director, ASLaRC Aged Services Unit Southern Cross University, Australia

Acknowledgements The booklet is dedicated to the memory of Dr Tania Lienert, one of the principal researchers in the project. In-kind support and Steering Committee membership provided by: –ACON –The Gender Centre –Inner City Legal Centre –Northern Rivers Community Legal Centre Phase 2 Study funded by the NSW Law and Justice Foundation

Community Concerns in Terminal Illness: Rank Order FACTORSQ1Q2NT Loss of Mental Faculties111 Loss of Control222 Loss of Independence*33 Burden on Family*44 Loss of Dignity455 Leaving Loved Ones5*6 Protracted Dying**7 Extreme /Physical Pain368 Death Itself9910/10

GLBTI Concerns Reports to relevant legal and community services – plus a review of the literature - indicate that many GLBTI people are denied their legal rights in the end-of-life care of their partners and other important people in their lives One way to ensure that this does not happen is Advance Care Planning If Advance Care Planning does not take place, GLBTI people can be further disadvantaged. For example, families who rejected their family member when he or she “came out” will often try to take over when that person is at the end stage of life, or health professionals will deny the same-sex partner the right to make decisions about medical treatment.

Advance Health Care Directives An Advance Health Care Directive –is a written legally-binding document, allowing a person to make their wishes for future health care known –extends the current right of a competent person to refuse treatment to a future time when they may not be competent –is NOT a form of euthanasia, as it only allows actions which a person could legally consent to for themselves if they were competent to speak –only comes into effect when the person making it loses decision-making capacity.

Barriers to Use of Advance Health Care Directives Barrier Cty % HPs % Don’t know how to6188 Don’t know enough about them6091 Prefer to leave decision to doctor3763 Don’t like to think about end-of-life issues 3375 Prefer to leave decision to family2969

Who can make Health Care Decisions for someone who has lost capacity? In Australia, if there is an Advance Directive and it meets the current situation, it is legally binding (family or doctor cannot over-rule it); if there is no AD All Australian States/Territories have legislation which nominates a hierarchy of substitute decision-makers ; in NSW this is –The person’s guardian Appointed by Tribunal; or Appointed by the adult as an Enduring Guardian –Spouse of the person (includes same-sex spouse) –A non-professional carer –Close friend or relative of the person

ASLaRC Research: Phase 1 International literature review; Consultations with GLBTI community members and service providers Major findings: Families & health professionals often –(a) ignore same-sex relationships and/or sexual and gender identity; and –(b) do not acknowledge the appropriate/legally recognised substitute decision-maker in end-of-life care for GLBTI people; This exclusion causes additional grief and loss of dignity for both the patient and their partner. Some service providers did not know that the same-sex partner was the legally recognised substitute decision-maker under the NSW legislation; levels of awareness of existing ACP legal mechanisms varied considerably among clients of service providers consulted.

Phase 1 - Major Findings - 2 GLBTI people can be isolated from family/friends, and/or experience mental illness or problematic alcohol or drug use at the end of life. A cooperative approach between agencies could support both the client and agency staff in these instances. GLBTI people in small rural communities experience stigma and discrimination – often are not “out”. When same-sex relationships and other important relationships are communicated to and recognised by families and health care professionals, and if advance care planning is well organised and communicated to significant people, GLBTI people can experience appropriate end-of-life care and die with dignity.

Findings 3: Barriers to Advance Care Planning for GLBTI People Not wanting to think about the end of life denial of the realities of ageing and death: (gay men only) lack of time / low priority to undertake ACP lack of knowledge about ACP not knowing who to appoint to significant decision-making roles Recommendations From Ph 1 –Systemic Change: legal and social recognition of same-sex relationships, and the diversity of sexual and gender identity; –Develop GLBTI-specific Information and Advance Care Planning Resources –Interventions to prevent Social Isolation and encourage Social Connection –Education of Service Providers

Phase 2: State-wide Survey A hard-copy questionnaire was developed and modified for on- line use. The questionnaire was distributed through Newsletters, magazines and other networks of the research team and Steering Committee members, incl. ACON & the Gender Centre. 305 useable questionnaires returned; could not determine response rate as not possible to track questionnaire distribution

Knowledge of/Experience with Advance Care Planning Options Not many respondents had heard of, or had experience with, Advance Care Planning or Advance Directives. Majority incorrectly identified who could make health-care decisions for someone who had lost capacity. 87% had a regular GP; only 13% had discussed their preferences for end-of-life care with their health care provider, although 76% said that they would be comfortable if their health care provider raised the issue with them. 18% of respondents had appointed a substitute decision-maker. Only 12% had written an Advance Health Care Directive.

Substitute decision-making Who would they want to make medical decisions for them if they could not do so? –Partner 44%; blood relative 25%; friend 17%; –52% had spoken to nominated person about their wishes. –Those who had not done so said: the issue had not arisen (49%); they were young and/or healthy and saw no need (12%); such discussion are morbid (10%); or could not identify a substitute decision-maker (8%). –55% were confident their wishes would be carried out if they were seriously ill and could not speak for themselves; –90% said that, if they were in the late stages of a life-threatening illness, they would want treatment that focussed on relief of symptoms, even if that shortened their life.

Main Barriers & Preferred Place to Die Main Barriers to ACP: (1) lack of knowledge, both about the actual documents and about how to complete them; (2) the belief that it was “not necessary at present”; and (3) some respondents said that they would prefer to “leave it until the situation arises”. (Note: often too late) Preferred place to die : (Strongly Agree – Strongly Disagree for each option: Results for Strongly Agree & Agree responses) –at home – 79%; in a GLBTI-specific care facility - 61%; –in a hospice – 41%; in a hospital – 43%; in a nursing home – 16%. While 61% would prefer to die in a GLBTI-specific care facility, we need to ask: “Is the need actually for such a facility or is it the need for a place where GLBTI people can feel safe to be who they are, to be treated with respect and dignity by the staff, to have the people they most care about around them and to have their wishes respected?” (e.g. Riviera Aged Care Service, “Safe Space at Our Place”)

Conclusions This study highlighted the urgent need for focussed education for GLBTI people in NSW about legally available Advance Care Planning options, particularly as many GLBTI people are ageing and are likely to be facing the need to make end-of-life decisions for partners and/ or friends. We strongly recommend that GLBT organisations and NSW Health work with Divisions of General Practice to encourage GPs to become familiar with the law in NSW relating to Advance Care Planning, to discuss these issues with their GLBT patients (and all patients) and to assist them to appoint an Enduring Guardian and complete an Advance Health Care Directive. GLBT-specific Advance Care Planning resources: –1/ respect my decisions: It’s my right! A Guide to Advance End-of-Life Care Planning for Gay, Lesbian, Bisexual, Transgender & Intersex People. –2/ GLBTI-specific Advance Health Care Directive (available for free download from [look for Advance Care Planning documents link on Home page])