27 March 2014 Prfessr Debra Picne Chief Executive Officer Australian Cmmissin n Safety and Quality in Health Care c/ Ms Jennifer Hill, Senir Prject Officer Level 5, 255 Elizabeth Street SYDNEY NSW 2000 By email t: endflifecare@safetyandquality.gv.au Dear Prfessr Picne ACSQHC Natinal Cnsensus Statement: Essential Elements fr High Quality End-flife Care in Acute Hspitals. The Ryal Australian and New Zealand Cllege f Psychiatrists (RANZCP) welcmes the pprtunity t prvide feedback int the Australian Cmmissin n Safety and Quality in Health Care (ACSQHC) draft Natinal Cnsensus Statement: Essential Elements fr High Quality End-f-life Care in Acute Hspitals. The dcument is well cnstructed frm the perspective f patient-centred care, the gals and prcesses invlved t achieve this. There are hwever imprtant areas that are mitted and in particular, thse that address the end-f-life care fr peple with dementia r with chrnic mental illness. Als infrmatin n the types f supprt recmmended fr family members is nt adequately utlined in this Cnsensus Statement. These cncerns are detailed in the RANZCP submissin. The RANZCP lks frward t receiving the final versin f the Cnsensus Statement. If yu wuld like t discuss any f the issues raised in the submissin, please cntact Dr Anne Ellisn, General Manager, Practice, Plicy and Prjects, via anne.ellisn@ranzcp.rg r by phne n 03 9601 4918. Yurs sincerely Dr Murray Pattn President Attachment: RANZCP Submissin - ACSQHC Natinal Cnsensus Statement: Essential Elements fr High Quality End-f-life Care in Acute Hspitals Ref: 3530 309 La Trbe Street, Melburne VIC 3000 Australia T +61 3 9640 0646 F +61 3 9642 5652 ranzcp@ranzcp.rg www.ranzcp.rg ABN 68 000 439 047
RANZCP Submissin Australian Cmmissin n Safety and Quality in Health Care Natinal Cnsensus Statement: Essential Elements fr High-Quality end-f-life care in acute hspitals 31 March 2014 Intrductin The Ryal Australian and New Zealand Cllege f Psychiatrists (RANZCP) welcmes the pprtunity t prvide feedback int the Australian Cmmissin n Safety and Quality in Health Care (ACSQHC) draft Natinal Cnsensus Statement: Essential Elements fr High Quality End-f-life Care in Acute Hspitals. Of particular relevance and imprtance t the RANZCP is ensuring that patients with chrnic r enduring mental illness, wh may have impaired capacity r ability t cmmunicate, receive equitable end-f-life care in acute hspitals as thse with a physical illness, and that their families and carers are supprted thrughut this time. Further, just as in the case f peple with physical health prblems, peple with mental health presentatins in acute care settings need t be fully assessed at admissin, including an assessment f active and static risks and prtective factrs as they relate t the prvisin f end-f-life care. General cmments Treatment f families and carers The RANZCP is cncerned that the types f supprt recmmended fr family members is nt adequately utlined in this Cnsensus Statement. The dcument des nt utline any key pints that spell ut the imprtance f family-centred care. It is pssible fr teams t define family-centred gals f care alngside patient-centred gals, and this is recmmended. Palliative care and cnsultatinliaisn psychiatry bth recgnise the family as a secnd-rder patient in end f life care, and this shuld be emphasised in the cnsensus statement. Studies have shwn that while 80% f families adapt successfully t bereavement, 20% develp cmplicatins, and these persns are identifiable during palliative and end-f-life care [1]. Further, studies have shwn that at-risk families can be identified during palliative care, and that psychscial assessment and care can and shuld begin well ahead f death [1]. The Cnsensus Statement shuld acknwledge that t d s is best practice fr the families and the patient. There are als well recgnised bereavement risk factrs that can be identified in individual carers and family members befre death ccurs in the index patient, and the plan fr their later care shuld be established befre death. Only when these steps are in place can an adequate standard f end-f-life care begin t be established. This relates t pint 3.2 n page 18 f the Cnsensus Statement. Respnding t cncerns The RANZCP supprts the principles utlined in sectin 5: respnding t cncern, particularly the emphasis it places n respnding t family cncerns. The described apprach f gaining a secnd pinin is welcme, and the RANZCP recmmends strengthen this sectin s it invlves infrmatin n the prcess f ethics cnsultatins and the invlvement f ethics cmmittees. Clinical ethics cmmittees have a small number f multidisciplinary team members that represent training in biethics, psychiatry, medicine, nursing and pastral care, amng ther prfessinals. The prcess f referring a family r patient t a clinical ethics cmmittee that has representatives define the ethical dilemma, meet with the patient and family, clinicians, and relevant thers, and assesses the issues is very wrthwhile. Thrugh this prcess, unmet needs can be defined, cmmunicatin breakdwns can be reslved, and a better reslutin f issues fr patients and families can be achieved. 1
Training Psychiatrists ften play a rle in serving n hspital-based clinical ethics cmmittees, meaning there is a dual benefit in access them, as they may be able t identify any unmet needs relating t the mental health and wellbeing f the patient and family in questin. It is f cncern t the RANZCP that the dcument is premised n the basis that all staff wrking in palliative and end-f-life care has the apprpriate qualificatins and training. One f the greatest challenges facing end-f-life care frm a service and clinician s perspective is a lack f training fr staff wrking in this field. The RANZCP appreciates that incrprating this infrmatin in the dcument wuld ptentially invlve majr changes in the structure f the dcument and therefre recmmends that the Cnsensus Statement wuld benefit frm a caveat that emphasises the need fr greater investment and advcacy fr mre investment in training staff t deliver end-f-life care. Advanced directives and at-risk grups The imprtance f advanced directives in end f life care, particularly fr peple wh may nt be able t cmmunicate their wishes abut the type f medical interventin they wuld like t receive, is crucial. In mental health, advanced directives deal primarily with directives abut treatment ptins when a patient becmes t unwell, fr example whether r nt they agree t the use f electrcnvulsive therapy. It is crucial fr family / carers f relatives with serius mental illness t understand hw t prepare these directives, and further instructin n hw t d s in the Cnsensus Statement wuld be a welcme inclusin. Patients with dementia It is imprtant t ensure that peple wh develp mental health prblems at the end-f- life have access t mental health care that helps address the psychlgical distress that may cme during this perid; this is even mre imprtant with regard t patients with dementia, which is an acknwledged terminal illness [2]. Early dementia may pse particular difficulties in assessing cmpetence t make an advanced directive [3], and this shuld be cnsidered in the Cnsensus Statement. A recent Alzheimer s Australia s survey reprted that 58% f cnsumers reprt lack f access t palliative care services [4]. Further, 90% f care prfessinals indicated that additinal training n palliative care and dementia wuld be beneficial. With 332,000 Australians living with dementia and that number set t increase by ne third t 400,000 in less than ten years [5], this is a pririty area that cannt be excluded frm this Cnsensus Statement. Peple living with chrnic mental illness Anther vulnerable grup is peple with chrnic mental illness, wh die n average 25 years earlier than the general ppulatin and have a heightened risk f terminal illnesses su ch cancer [6]. Chrnic mental illness may als pse difficulties in assessing cmpetence t make an advanced directive [3], and this shuld be incrprated int the Cnsensus Statement. Shared and supprted decisin making The Cnsensus Statement shuld emphasise that the assessment f decisin-making at the end-flife is understd by all clinicians, including that all reversible causes f impaired decisin-making, such as depressin and delirium are remediated where pssible and that pprtunities fr supprted - decisin making (as distinct frm shared decisin making fr the cgnitively able) are taken. 2
Specific sectins Page 7, Scpe In the paragraph that states It applies t inpatient acute care and rehabilitatin settings, add Page 10, Guiding Principles including acute inpatient mental health and rehabilitatin settings The RANZCP recmmends a specific principle n peple with mental illness. The suggested inclusin is: Peple with chrnic r severe mental illness r dementia have a right t equitable access t palliative care and pain relief, and any cmmunicatin deficits accmpanying their illness which might interfere with the prvisin f adequate care must be identified and addressed. Guiding Principle #8, under The interdisciplinary team have a respnsibility t..., add: Understand the assessment f decisin-making (capacity), identify and treat any reversible causes f impaired decisin making in this setting such as depressin and delirium t maximise the pprtunity f peple t participate in decisin-making Prvide pprtunities fr supprted decisin making fr the cgnitively impaired r intellectually disabled Page 12, Prcesses f care - Patient centered cmmunicatin and shared-decisin making The RANZCP welcmes the fcus n shared decisin making. Hwever, mre emphasis is needed n thse with cgnitive r intellectual impairment. The recmmended inclusin is: Shared decisin making (with cgnitively able peple) can be distinguished frm supprted decisin making fr thse with cgnitive r intellectual impairment, r severe mental illness. Maximising the input and vice f such peple int decisins abut their care at the end f life is an bligatin f all clinicians. Further, under actins fr patient centered cmmunicatin and shared decisin making, the fllwing dt pint shuld be added: Clinicians shuld seek t understand the assessment f decisin making capacity at the end f life and maximise pprtunities fr participatin by patients with impaired decisin making. This might mean deferring decisins until any treatable causes f impaired decisin making such as depressin r delirium are amelirated, r, where this is nt pssible, t prvide pprtunities fr supprted decisin making. Page 17, Cmpnents f care Actins Again, further emphasis must be placed n peple with cgnitive r intellectual impairment and their ability t cmmunicate their wishes. Under pint 3.10, the fllwing sentences shuld be added: All patients have the right t adequate pain relief and symptm cntrl, including peple with chrnic r severe mental illness, intellectual disability r dementia. Physical symptms shuld be managed in alignment with the patient s wishes. Where there are cmmunicatin difficulties and it is difficult t ascertain what the patient s wishes r needs are, it is imprtant t seek advice frm and cnsult with families and carers. Page 19, Using triggers t help recgnise patie nts appraching the end f life Under pint 4.3, add Clinicians shuld cnsider additinal triggers. Examples might include: mderate t severe dementia 3
References 1. Kissane D W, B.S., Family Fcused Grief Therapy: A Mdel f Family Centred Care During Palliative Care and Bereavement2002, Buckingham: Open University Press. 2. Cartwright C, Paper 23 Part One: Planning fr the End f Life fr Peple with Dementia, in Alzheimer's Australia, A.s. Australia, Editr 2011: Online. 3. NSW Ministry f Health, Using Advanced Care Directives: New Suth Wales, in Plicy Manual: Patient Matters, N. Health, Editr 2005: Sydney. 4. Alzheimer's Australia, End f life care fr peple with dementia: survey reprt, Alzheimer's Australia, Editr 2014, Alzheimer's Australia. 5. Alzheimer's Australia. Key Facts and Statistics n Dementia 2014. 2014 [cited 2014 18 March 2014]. 6. Physical Health Ministerial Advisry Cmmittee n Mental Health Subcmmittee, Imprving the physical health f peple with severe mental illness: n mental health withut physical health Ministerial Advisry Cmmittee n Mental Health, Editr 2010, Department f Health (Vic): Melburne. 4