Kay de Vries. Graduate School of Nursing, Midwifery and Health Victoria University Wellington

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1 Kay de Vries Graduate School of Nursing, Midwifery and Health Victoria University Wellington

2 History/definitions USA/UK/NZ. Capacity & surrogates Barriers to completing ACP Complexity of ACP settings, groups Concluding thoughts Research

3 Last words Wills Living Wills (USA 1969) Advance Directives (AD)

4 What is the aim of an Advance Directive?

5 Many of the efforts still aim at, and are judged to be successful by, achieving the traditional objective of making advance decisions!!!

6 General Care Planning Advance Care Planning (ACP) advance statement Advance Decisions to Refuse Treatment (ADRT) Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)

7 All 50 states and the District of Columbia have some type of ACP legislation The Patient Self Determination Act (PSDA) (1991) Specifics of these vary greatly Concerns regarding motivation of Government and medical insurance profits

8

9 Requires any: : hospitals; skilled nursing facilities; home health agencies; hospices; health maintenance organisations That are receiving: Medicare and Medicaid funding To provide: information about ADs to all patients and to inform them of their right to complete a plan

10 Advise patients on admission of their right to adopt or refuse medical care Advise patients of their right to execute an AD Document whether a patient has an AD Implement AD policies Educate staff and communities about ADs In the case of managed care organisations and home health care agencies, provide the same information to each of their members on enrolment

11 Promotion of AD preceded evidence of their effectiveness AD often not completed Did not make it to medical record Did not influence medical care Increased proportion of AD documentation in medical records from 6% to 35% Not associated with changes in care or decreased use of hospital resources

12

13 Does the person have an impairment of the mind or brain, or is there some sort of disturbance affecting the way his or her mind or brain works? (It does not matter whether the impairment or disturbance is temporary or permanent)

14 A person is unable to make a decision if he or she cannot: Understand information about the decision that is to be made Retain the information for long enough to reach a decision Use the information as part of the decision making process Communicate his or her decision (by whatever means is necessary)

15 At the end of life, many patients are unable to make treatment decisions because of cognitive impairment Expected to decipher how the patient, if able to fully understand his or her condition, would make treatment decisions

16 Understanding of patient preferences only slightly better than chance Patients rarely discussed their treatment preferences with their surrogates Access to a patient s AD or communication with the patient regarding end of life preferences does not improve surrogate decision accuracy

17 Underestimate patient preference for less aggressive care Own values and beliefs influence their predictions of others preferences Depression and anxiety common among surrogates

18 End of Life Care Strategy (2008) Website: GUIDES: Capacity, care planning and ACP in life limiting illness Best interests at end of life Preferred Priorities of Care Planning for your future Advance decisions to refuse treatment Making decisions Holistic common assessment Quality markers and measures for end of life care

19 National Health Service (NHS) Strategic Health Authorities Primary Care Trusts Community General Practitioners District Nurses Healthcare Charities e.g. Hospices Social Services NHS Hospitals Community Hospitals Private Hospitals Other Private Healthcare Services Nursing and Residential Homes (Private)

20 The End of Life Care Pathway Gold Standards Framework End of Life Care Strategy (2008) Liverpool Care Pathway Advanced Communication Skills Training Preferred Priorities of Care

21 The End of Life Care Pathway Step 1 Step 2 Step 3 Discussion as end of life approaches Assessment, care planning, and review Coordination of care Step 4 Step 5 Step 6 Delivery of high quality services Care in the last days of life Care after death Support for carers and families, information for patients and carers, spiritual care services

22 Recognizes ACP plays an important role in advancing patient self determination That it can reduce stress on families involved in making health care decisions Predicts an increase in prevalence of ACP as Australia s s population ages Recommends uniform national legislation for legally enforceable AD, guidelines on preparation and implementation of AD, and statutory protection of practitioners

23 However: doctors may ignore an AD when the doctor believes that the AD is inconsistent with good medical practice or advances in medical science, thereby preserving doctors clinical judgment and discretion

24 Five aims of Respecting Patient Choices Program: Initiate conversations with adults regarding views about future medical care Skilfully facilitate planning for each individual Guarantee all ACP are clear to all involved and specific to each patient Ensure plans are available when needed Appropriately follow plans in a thoughtful and respectful way

25 ACP for Adults: Planning for your future care: Consultation document (2010) Adapted from UK NHS National End of Life Care Programme (Wareham et al., 2005; : Malpas, 2011)

26 Outsourcing!

27 How many of you have made an ACP?

28 This is us!!!!

29 Not interested Procrastination Difficult subject Lack of knowledge Need help Changing minds Dependence on family Forms too vague Document not accurately reflecting actual values, goals and preferences Cultural and ethnic attitudes about end of of life issues differ

30 Uncomfortable talking about end of of life issues Death denying society Fatalism, or acceptance of the will of God Fear of: signing my life away ; ; not being treated Waiting for the healthcare professional to initiate discussion Healthcare professional waiting for the patient to initiate discussion Waiting to do it later

31 Influence of personal values/beliefs/culture Inducing anxiety Rob patients of hope Anxious that discussions may be inappropriate Inducing strong emotions Dealing with family disagreement and conflict Not my responsibility Unskilled Organisational confusion re process Time

32 Need for guidance Complexity of healthcare Believing they need a lawyer to fill out the forms Forms too vague or fail to provide specific, detailed practical guidance Forms lend themselves to misinterpretation by family members or health care providers

33 Changes in medical condition Not as bad as expected Written before illness then at time of decision realisation of fear of death Desire for a Good Death free of tubes and machines coexists with a powerful desire to stay alive

34 Mistrust of the system Belief that the health system controls treatment Wait until very sick before expressing wishes Medicalised death Religious/spiritual concerns

35 Even when an AD/ACP is present in a patients medical record, health care professionals often doubt their relevance and authenticity May disregard them or rely on family members to make medical decisions

36 General hospitals: ICU, surgery, speciality units (cardiac, urology, ED, etc) Primary care Care homes Hospices Psychiatric hospitals Doctors Nurses Allied HCP e.g. Paramedics

37 Healthy well adults Dying parents with dependent children People with severe mental health problems Different ethnic/cultural groups Frail older persons People with cognitive impairment e.g. dementia People with learning disabilities Specific illnesses e.g. COPD, MND, heart failure, renal failure, cancer

38

39 Opened up communication (Story and Pemberton, 2003) ACP involves distinct steps including contemplation, discussions, and documentation Promoting discussions with family and friends may be one of the most important targets for ACP interventions

40 Voluntary Result statement of wishes, preferences, beliefs, values All health and social care staff should be open to ACP Communication training is required Focus on individual but may request support person(s) ACP is not legally binding Requires capacity Appropriate guidance should be used for ADRT If no record of ACP or ADRT decisions made in persons Best Interest

41 Need to understand legal frameworks Skilled and potentially emotionally taxing work Need protected time to engage with patients and families Need to be personally comfortable and confident about engaging with potentially sensitive and upsetting issues Not to be engaged in lightly

42 Is this a matter of concern?

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