Advance Care Planning (ACP) and the National Advance Care Planning Cooperative

Transcription

1 Advance Care Planning (ACP) and the National Advance Care Planning Cooperative Kate Grundy 2012

2 Format What is advance care planning? Why is it important? What does it involve? The National ACP Cooperative Advance Care Planning: A guide for the NZ health care workforce (Ministry of Health 2011) Getting started.

3 What is the problem? Dying was once a relatively straightforward affair. If you had a terminal illness, there was little your doctor could do apart from relieve your suffering and comfort your relatives Sir Raymond Hoffenberg, RCP 2006 How very different things are today.

4 There has been an expansion of human rights to embrace patient demand for more autonomy It is accepted that mentally competent patients have the right to accept or refuse any treatment offered to them, even if such choices would lead to their death There is a strong call from medical and nonmedical groups to improve our communication with patients and let them have a clearly recorded voice when planning and preparing for their end of life care

5 What is Advance Care Planning? ACP is a process of discussion and shared planning for future health care It involves patient, family/whanau and health care professionals It gives patients the opportunity to develop and express their preferences for end of life care based on; their personal views and values a better understanding of their current and likely future health the treatment and care options available

6 Premise: Timely and appropriate decision-making about EOLC is more likely to occur if those close to the patient understand the patients wishes in advance

7 Barriers to having the conversation. Cure culture Specialisation

8 Other barriers.. Paternalism Not comfortable talking about it I don t know how I don t have the time Complexity of prognostication

9 Ethico-legal issues/values Autonomy Truthfulness Nonmaleficence Dignity Beneficence Justice

10 Advance Directives Do not need to be in writing Apply only when patient lacks capacity Cannot require the provision of specific treatment Requirements for validity: Patient must be competent when AD was written Informed Free of undue influence The AD must have been intended to apply in the circumstances that have arisen

11 Capacity determination The common law test for capacity centres on a person s ability to understand the relevant information and appreciate the reasonably foreseeable consequences of a decision Ultimately the point is not whether a decision is reasonable or what the health care professional would have chosen, but whether the person had capacity to make the decision

12 When the patient is not competent If there is absence of capacity (Right 7(4)): Is there someone else who has authority? Eg an Enduring Power of Attorney for personal care and welfare If not, then The clinician makes the decision based on ascertainable views of patient, or The clinician makes the decision in the patient s best interests taking into consideration the views of other suitable people

13 What does ACP involve? Conversations Important conversations Seek insight The process is most important An assumption that this is a simple and easy process would be wrong it requires skill and sensitivity due to the deep significance of the subject

14 Why bother? People only die once; they have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come. Gawande, A. (2010): Letting go, Annuls of Medicine, The New Yorker

15 Palliative care 151 patients with metastatic non-small cell lung cancer Randomised to standard care or standard care plus early palliative care Quality of life and mood assessed at 12 weeks 27 died by 12 weeks, 107 assessed

16 Standard care plus palliative care: Fewer chose aggressive end of life care 33 vs 54% Higher QoL Fewer had depression 16 vs 38% Median survival longer 11.6 vs 8.9 months

17 BMJ 2010

18 56 died by six months End of life wishes more likely to be known and followed Family members had significantly less stress anxiety depression Patient and family satisfaction was higher in the intervention group BMJ 2010

19 BMJ 2010

20 Identifying patients for ACP Illness trajectories may help Short period of decline Long term condition with intermittent episodes Prolonged dwindling

21 Other triggers The patients asks about ACP or palliative care Or they request a reduction in intensity of treatment Yes to 4 questions Is the patient seriously ill? Is the patient s condition not improving? Will the condition worsen? Will the condition cause death? Would I be surprised if he/she died in the next 12 months?

22 In addition Has the patient moved into residential care because of increasing frailty of declining health (or are they needing more supports at home)? Is the patient requiring more interventions eg blood transfusions, antibiotics etc? Is the patient requiring more hospitalisations? Live for today, but plan for tomorrow One size does not fit all

23 How to get started You never know what can happen in life. But what if an accident left you without the ability to make your own health care decisions? What would you want to have happen? Who would you want to make decision for you? Advance care planning deals with those kinds of questions. I want you to understand that our first priority is to make sure you get the very best care we can provide. Everyone is unique and we can t with any certainly say when your condition will change. But, it is important to talk about what might happen in the future and to know how you feel about it.

24 Tips Make sure the patient is ready their agenda not yours!! Be ready have all the information you need Create the right environment Make sure the right people are there Avoid leaving the conversation until the need for decisions is urgent Don t make assumptions based on culture, religion, age, gender, disability etc

25 Communication skills Don t assume you understand ASK! Ask Tell Ask Tell me more NURSE N = name the feeling or emotion U = express your understanding R = respecting and reassuring S = supporting E = exploring

26 Empathy What worries you most about your illness as time goes by? Is there something you are especially afraid will happen? Empathy and good communication skills are very important when broaching issues such as lifesustaining therapy and resuscitation

27 Organisational - Getting and retaining the support & involvement of health care leadership Community reaching out to the general public to engage them in ACP development, deployment and participation Engagement People, patients, families & whanau Education Health workforce engage, train and support to initiate, participate and facilitate ACP provide tools and information resources People inform them of ACP and the benefits provide information resources and tools to guide and record ACP To ensure treating clinicians and other health care workers are aware of the person s preferences and Advance Directives System infrastructure Continuous quality Improvement Fostering a health workforce culture of continuous quality improvement Developing and testing measurement and evaluation tools, take lessons learnt and apply to practice improvement Underpinned by a conducive policy environment and availability of human & financial resources Advance Care Planning Deployment Model Adapted from Health Canada, March 2008

28 The Cooperative Inaugural International Conference in ACP and End of Life Care, Melbourne 2010 The NZ National ACP Cooperative was born. Five Task Teams and a Round Table

29 National ACP Cooperative Collective of clinicians Guiding the design and implementation of ACP across NZ Open membership Vision: All people in NZ will have access to comprehensive, structured and effective advance care planning

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31 MoH guide for the health care workforce Standardised info about ACP principles and legislation Aims to promote consistency Will assist in the development of local policies, guidelines & training in ACP

32 Guiding the process LEGAL ETHICS TASK TEAM Clarified the legal framework for ACP in NZ Prepared a discussion paper Provided input into the consumer information resources and clinical training material

33 ACP competency model TRAINING TASK TEAM

34 Level 1 Aimed at health care workers who interact with patients Aims: Understand the legal basis for ACP Understand and be able to explain the benefits of ACP Understand how ACP fits in their area s approach to care Understand when to provide info on ACP Backed up by sound (but basic) communication skills

35 Training developed L2 ACP practitioner TRAINING TASK TEAM L3 ACP facilitator

36 Consumer resources TOOLS TASK TEAM

37 PUBLIC DOMAIN TASK TEAM

38 Consumer engagement PUBLIC DOMAIN TASK TEAM General public survey Attitudes and views about ACP Co-design workshop How would consumers like to see ACP being delivered? Consumer work groups exploring more tools and ways to involve the community and volunteers in creating awareness

39 - Choice

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41 What do we need to do? Help people understand what the future might hold so they can be better prepared and we can be better informed to make decisions in their best interests

42 Where to now? It has been agreed that ACP cannot reside in Palliative Care Recent major improvements to CDHB resuscitation policy and form (DNACPR) allowing an enduring decision to be recorded for the first time Canterbury Initiative is helping to educate GPs and with standardisation of documentation Work in progress..

43 My Advance Care Plan It is primarily a statement about values and preferences Aimed at promoting discussion amongst families Gets you thinking - Gets you talking Have you done an Advance Care Plan?! What choices would I make for myself? What are my greatest fears? What is most important to me? Beware of the risk that I impose my beliefs or personal experiences on others.

44 Thank you Any questions?