Advance Care Planning an introduc3on to the Brighton & Hove toolkit Dr Simone Ali MA FRCP Clinical Director Macmillan Community Team Sussex Community NHS Trust and Consultant in Pallia3ve Medicine The Martlets Hospice, Hove Dr Louise Mason MSc MRCP Consultant in Pallia3ve Medicine Brighton & Sussex University Hospitals NHS Trust
Overview What is Advance Care Planning? How far have we come locally? The new Advance Care Planning Toolkit What it looks like Who should use it How to use it What difference could it make in prac3ce?
Advance Care Planning (ACP) A voluntary process of discussion and review between an individual and their care provider. To help an individual an3cipate how their condi3on may affect them in the future, and thus iden3fy the wishes and preferences of that individual regarding their future care. Helps guide care providers if needing to make decisions in the future should that individual lose capacity. Recommended that with the individual s consent, discussion is documented and communicated to key persons.
The differences between general care planning and decisions made in advance General Care Planning Advance Care Planning (ACP) - advance statement Advance Decisions to Refuse Treatment (ADRT) Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) What is covered? Can cover any aspect of current health and social care. Can cover any aspect of future health and social care. Can only cover refusal of specified future treatment. May be made as an option within an advance care planning discussion. Only covers decision about withholding future CPR. Who completes it? Can be written in discussion with the individual who has capacity for those decisions. or Can be completed for an individual who lacks capacity in their best interests. Is written by the individual who has capacity to make these statements. May be written with support from professionals, and relatives or carers. Cannot be written if the individual lacks capacity to make these statements. Is made by the individual who has capacity to make these decisions. May be made with support from a clinician. Cannot be made if an individual lacks capacity to make these decisions. Completed by a clinician with responsibility for the patient. Patient consent is sought only if an arrest is anticipated and CPR could be successful. Can be completed for an individual who does not have capacity if the decision is in their best interests. What does it provide? Provides a plan for current and continuing health and social care that contains achievable goals and the actions required. Covers an individual s preferences, wishes, beliefs and values about future care to guide future best interests decisions in the event an individual has lost capacity to make decisions. Only covers refusal of future specified treatments in the event that an individual has lost capacity to make those decisions. Documents either - that CPR cannot be successful and should not be attempted - an individual s advance decision to refuse CPR. Is it legally binding? No - advisory only. No - but must be taken into account when acting in an individual s best interests. Yes - legally binding if the ADRT is assessed as complying with the Mental Capacity Act and is valid and applicable. If it is binding it takes the place of best interests decisions about that treatment. Yes - if it is part of an ADRT. Otherwise it is advisory only, i.e. clinical judgement takes precedence. How does it help? Provides the multidisciplinary team with a plan of action. Makes the multidisciplinary team aware of an individual s wishes and preferences in the event that the patient loses capacity. If valid and applicable to current circumstances it provides legal and clinical instruction to multidisciplinary team. Makes it clear whether CPR should be withheld in the event of a cardiac or respiratory arrest. Does it need to be signed and witnessed? Does not need to be signed or witnessed. A signature is not a requirement, but its presence makes clear whose views are documented. For refusal of life sustaining treatment, it must be written, signed and witnessed and contain a statement that it applies even if the person s life is at risk. Does not need to be witnessed, but the usual practice is for the clinician to sign. Who should see it? The multidisciplinary team as an aid to care. Patient is supported in its distribution, but has the final say on who sees it. Patient is supported in its distribution, but has the final say on who sees it. Clinical staff who could initiate CPR in the event of an arrest.
Aims of ACP Purpose is to support pa3ent choice, and respect wishes of pa3ent and family Avoiding inappropriate interven3ons and hospital admissions at the end of life Allowing pa3ents to die in their place of choice
Why bother with ACP? Treatment and care towards the end of life: good practice in decision making you MUST plan ahead as much as possible to ensure 3mely access to safe, effec3ve care and con3nuity in its delivery to meet the pa3ent s need Guidance for doctors your conversa3ons should include
ACP might include discussions about... Prognosis Expected or poten3al clinical sequelae Care or treatment op3ons available Benefits and burdens of these Preferred place of care Wishes, beliefs, personal goals and aspira3ons
Do I act in my pa3ents best interests? Do I respect my patients' autonomy such that I am prepared to tell them the truth about their disease or prognosis and their realistic options, or do I continue to deceive both them and myself and waste their remaining life by behaving as though they will stay alive so long as I keep treating them? When looking at what may benefit them, do I ask them what good or bad looks like through their eyes, and seek to act upon it, or do I assume that I know best and carry on regardless? Professor Rob George. BMJ Support Palliat Care doi:10.1136/bmjspcare- 2011-000123
Triggers for introducing ACP Significant change in health status Diagnosis of a chronic or progressive incurable illness Recogni3on of a likely life- limi3ng change Change in carer circumstances or change in care environment (e.g move to care home) Recogni3on of transi3on to terminal phase of an illness
Copyright 2008 BMJ Publishing Group Ltd. Murray, S. A et al. BMJ 2008;336:958-959 The three main trajectories of decline at the end of life
Introducing the ACP toolkit
LPA ADRT Advance Statement of Wishes & Preferences Preferred PrioriAes for Care (paaent held document) Planning your Future Care ADRT = Advance Decision to Refuse Treatment, LPA = Las3ng Power of Adorney
Name: Address: Advance Statement D.O.B NHS number: Clinical Issue Date N/A Details/Decision Preferred Place of Care Cardiopulmonary Resuscitation (CPR) Transfusion of Blood Products Clinically assisted Nutrition and Hydration Assisted Ventilation 1 st preference 2 nd preference If patient does not wish to receive CPR, has GP/Consultant signed a DNACPR form? The Martlets Hospice The Martlets Hospice Advance Care Planning process: Guidance for Health Care Professionals. This guidance has been developed by a range of professionals across the local health economy to assist you in documenting and sharing the discussions you have with patients when planning their future care and treatment, particularly if they may be living in the last year of their life. Advance Care Planning (ACP) is a voluntary process of discussion and review to help an individual who has capacity to anticipate how their condition may affect them in the future and, if they wish, set on record: choices about their care and treatment and/or an advance decision to refuse a treatment in specific circumstances, so that these can be referred to by those responsible for their care or treatment (whether professional staff or family carers) in the event that they lose capacity to decide once their illness progresses. If you are not familiar with ACP, we recommend you seek available educational opportunities locally and consult the following National End of Life Care Programme interactive document Capacity, care planning and advance care planning in life limiting illness : http://tinyurl.com/5uaqfv2 The diagram below illustrates the possible outcomes of an ACP discussion, with the areas proportional those who might receive/complete each. Not all need be completed and the top 3 layers can be completed in any order. Table 1 overleaf illustrates the relevant document with a brief explanation of what it is for. ADRT = Advance Decision to Refuse Treatment, LPA = Lasting Power of Attorney The steps to proceed with the ACP process: 1. Consider if you are the right person to have the conversation and if it is the right time? 2. Provide the patient with the Planning for your future care A Guide booklet 3. If this is the right time for ACP, direct the person to the Preferred Priorities for Care (PPC) document and/or complete the pertinent document (Advance Statement of Wishes & Preferences (ceilings of treatment), Advance Decision to Refuse Treatment) or parts of the document. 4. If further conversations are needed at another time, hand this on to another healthcare professional e.g. GP, District Nurse, or arrange another appointment 5. Gain consent to share the information with other relevant healthcare professionals 6. Complete the Notification of Advance Care Planning form, retain a copy of this in the health records and forward the most recent copy to relevant healthcare professionals. If a healthcare professional makes any updates or amendments, they are responsible for sharing the updates with healthcare professionals as outlined on the Notification of Advance Care Planning form. Table 1: Possible outcomes of ACP discussion, and relevant documents to use Lasting Power of Attorney Planning for your future care a Guide, is for people and those important to them. It explains Advance Care Planning and outlines the different options available to them including identifying wishes and preference, refusing specific treatment, making a Lasting Power of Attorney and where to go for further information. It is available in clinical areas and from: http://www.endoflifecareforadults.nhs.uk/publications/planningforyourfuturecare We recommend you provide this to all people who might benefit from ACP. Preferred Priorities for Care is a person-held document designed to facilitate individual choice in relation to end of life care. It focuses on preferences about how they would like to be cared for in the future, as well as the things that are important to them. Anyone can complete the document, not all of it needs to be completed. It is not appropriate for recording decisions about medical interventions or refusals of treatment. This document, as well as an Easy Read version and supporting information leaflets (Guide to Preferred Priorities of Care) are available in clinical areas and from: http://www.endoflifecareforadults.nhs.uk/tools/core-tools/preferredprioritiesforcare An Advance Statement of Wishes & Preferences (ceilings of treatment) can be used as a springboard for the professional to begin discussions which relate specifically to preferences regarding medical interventions during their illness e.g. clinically assisted nutrition, ventilation, CPR and other scenarios requiring hospital admission. Relevant areas are to be discussed with the patient if and when appropriate, and not all sections will necessarily be completed. The document is a dynamic one, to reflect the patient s wishes as they progress along their illness trajectory. This should be shared, with the patient s permission, with other relevant healthcare professionals so that expressed wishes are taken into account at a time when the patient may not be able to engage in discussions themselves. A signature is not required, as it is not legally binding, but serves to make the multiprofessional team aware of the patient s wishes and preferences if a best interest decision needs to be made. An Advance Decision to Refuse Treatment (ADRT) (previously known as an advance directive or a living will) is a decision that can be made now to refuse a specific type of treatment, including potentially life saving treatment, at some time in the future. It lets family, carers and healthcare professionals know the person s treatment refusals if they are ever unable to make or communicate that decision themselves. The treatments the person is deciding to refuse (including potentially life saving treatments) must be specifically named in the ADRT and the decision must be signed by them. The individual must be competent to complete the ADRT at the time. NB The form used at BSUH (see below) will have the term written in full; Advance Decision to Refuse Treatment replacing Advance Decision http://www.endoflifecareforadults.nhs.uk/assets/downloads/pubs_advance_de cisions_to_refuse_guide.pdf Adults can choose and appoint an LPA to act on their behalf if in the future they lose capacity to make these decisions for themselves. The LPA can be for health and welfare and/or property and financial affairs. An LPA supercedes any ADRT. You should direct them to the Office of the Public Guardian at: http://bit.ly/if79ex. Guidance written by the members of the BSUH End of Life Care Workstream 3 Communicating the patients journey across BSUH & the community Advance Care Planning process Task & Finish Group. September 2012 Guidance written by the members of the BSUH End of Life Care Workstream 3 Communicating the patients journey across BSUH & the community Advance Care Planning process Task & Finish Group. September 2012
The Martlets Hospice Notification of Advance Care Planning Current Address: NOK Address: Patient Label, or complete: Name: D.O.B: Trust ID no: NHS Number: Nominated NOK and relationship? Is there an existing Lasting Power of Attorney for Health and Personal Welfare? Yes/NO If Yes, please enter their name and contact details: Following a discussion about your future care, your Advance Care Plan includes the following documents: 1. Provision of the Planning for your future care A Guide booklet Yes/No 2. Preferred Priorities for Care Yes/No 3. Advance Statement of Wishes & Preferences Yes/No 4. An Advance Decision to Refuse Treatment Yes/No 5. Referral and advice on appointing a Lasting Power of Attorney Yes/No I consent to my Advance Statement and/or Advance Decision to Refuse Treatment and/or Lasting Power of Attorney being shared with the healthcare professionals indicated below. Signature: Name: Date: Named Healthcare Professional (HCP) Role/Team Hospital Health Records General Practitioner District Nurse Care Home Community Palliative Care Team Out of Hours GP Service Other (please state) This phase of my Advance Care Planning process was completed by: Name: Organisation/Role: Bleep no: Signature: Date: Time: Subsequent updates have been completed: Date: By whom: Organisation/role: Confirmation that they will inform HCPs above of the ammendments with my consent
Planning for your future care A GUIDE
Preferred Priorities for Care (Easy read) Preferred Priorities for Care
The Martlets Hospice The Martlets Hospice Advance Statement of Wishes and Preference Clinical Issue Date N/A Details/Decision Current Address: Nominated NOK and relationship? NOK Address: Patient Label, or complete: Name: D.O.B: Trust ID no: NHS Number: Other Scenarios Requiring Medical Intervention Including Hospital Admission Clinical Issue Date N/A Details/Decision Preferred Place of Care at the time of dying 1 st preference 2 nd preference Cardiopulmonary Resuscitation (CPR) Has a DNACPR form been completed by the GP/Consultant/other appropriately delegated clinician? Tissue and/or Organ Donation If appropriate, direct person to the NHS Organ Donor Register, 0845 60 60 400 or www.uktransplant.org.uk Transfusion of Blood Products Clinically assisted Nutrition and Hydration Are any of the following in place: -Advance Decision to Refuse Treatment (ADRT) -Lasting Power of Attorney - Health & Welfare &/or Property & Financial Affairs If yes, when last updated and where are copies This Advance Statement of Wishes and Preferences was completed by: Name: Organisation/Role: Bleep no: Signature: Date: Time: Assisted Ventilation Please ensure that with the patient s consent, this is shared with relevant health professionals (see Notification of Advance Care Planning form) and encourage the patient to also retain a copy. Subsequent Advance Statement of Wishes and Preferences updates have been completed: Date: By whom: Organisation/role: Confirmation that they will inform HCPs on notification sheet of the ammendments with patients consent Date Introduced: 06/08/12 Date of Approval: 27/07/12 File in: Health Records Clinical History 1 Date Introduced: 06/08/12 Date of Approval: 27/07/12 File in: Health Records Clinical History 2
STATEMENT OF PATIENT S WISHES Clinical Issue Advance Decision, Lasting Power of Attorney (LPA), Enduring Power of Attorney (EPA) Cardiopulmonary Resuscitation (CPR) Details/Decision If any in place, when last updated and where are copies held? None currently in place. If patient does not wish to be for CPR, has GP / Consultant signed DNAR form? Very clear about not wanting anything to prolong life. Only wants interventions that might improve quality of life and that allows her to stay at home. Discussion held about benefits and burdens of CPR. DNACPR form completed. Daughter aware. Staff sig: Date 10.10.11 Staff sig: Date 10.10.11 Artificial Feeding & Hydration Would be willing to have S/C fluids at home if felt to be clinically necessary and if would lead to relief of uncomfortable symptoms. Staff sig: Date 17.10.11 Assisted Ventilation Not appropriate to discuss. Staff sig: Date 17.10.11 Transfusion Of Blood Products Not explored today. Staff sig: Other Scenarios Requiring Hospital Admission Preferred Place of Care Currently on oral ABs for chest infection. Wants to avoid hospital admission so would only consider IVABs if this could be administered at home and if felt that this would provide symptomatic relief. Home. Date 17.10.11 Staff sig: Date 17.10.11 Staff sig: Date 10.10.11
STATEMENT OF PATIENT S WISHES Clinical Issue Advance Decision, Lasting Power of Attorney (LPA), Enduring Power of Attorney (EPA) Cardiopulmonary Resuscitation (CPR) Artificial Feeding & Hydration Assisted Ventilation Details/Decision If any in place, when last updated and where are copies held? None in place but pt keen to find out more and possibly draw up an ADRT. If patient does not wish to be for CPR, has GP / Consultant signed DNAR form? Very clear about not wanting to undergo CPR. Wants nothing to prolong life. Only wants interventions that might improve quality of life. Understands CPR would be futile. DNACPR form completed by Hospice Consultant. Wife present and aware of above. Had resp function assessment in Feb 2011 by community physio to assess whether RIG insertion would be safe /feasible. No further action taken. Pt and wife very keen to explore issue further but need more info. D/W community SALT and neurologist: not fit for RIG or PEG. Plan to review need for NGT feeding if/when resp function deteriorates less quickly than expected and/or swallowing deteriorates more rapidly. Dependent on NIPPV at night. Does not want invasive ventilation. Staff sig: Date 16.09.11 Staff sig: Date 16.09.11 Staff sig: Date 16.09.11 Staff sig: Date 23.09.11 Staff sig: Date 16.09.11 Transfusion Of Blood Products Not explored today. Staff sig: Other Scenarios Requiring Hospital Admission Preferred Place of Care Currently on oral AB s for chest infection. Wants to avoid hospital admission if possible for IVAB s but would consider it if felt very unwell and if felt that this would provide symptomatic relief. Keen for decision to be made at the time in consultation with him if capacity or with wife if lacks capacity. Home. Date 16.09.11 Staff sig: Date 23.09.11 Staff sig: Date 16.09.11
Steps to proceed with ACP 1. Right person? Right 3me? 2. Provide the pa3ent with Planning your Future Care booklet 3. Begin discussions and explore which tools would be most helpful to document outcomes 4. Arrange further conversa3ons if needed with you or another professional and update documents accordingly 5. Gain consent to share informa3on
ACP For the paaent: Capacity Willingness to par3cipate Knowledge of op3ons available Communica3on Opportunity to review when needed/desired For the professional: An3cipate future care needs Effec3ve communica3on skills Confidence Team working Knowledge of key issues (legal, ethical) Clear documenta3on Provide opportuni3es for review/discussion
Which professionals should undertake ACP? Whoever iden3fies the need Whoever the pa3ent agrees to discuss the issues with Whoever responds to cues and takes the opportuni3es that arise All of us!
Clinical Outcomes in End of Life Care Death Quality of death Place of death
Actual place of death (MCT caseload) April 2007-March 2008 n=618 April 2009-March 2010 n=509 21% 10% 36% Hospice Home Hospital 23% 16% 29% Hospice Home Hospital 27% Care home 31% Care home
Actual Place of Death Home Hospice Hospital Care home Other MCT Caseload (2011-12) Home Hospice Hospital Care home Other England national average (2008-10)
Concordance with recorded Preferred Place of Care April 2007-March 2008 April 2009-March 2010 12% Achieved 15% Achieved 19% 69% Unknown Not Achieved 24% 61% Unknown Not Achieved
BSUH SPCT data 2010-2011 73% achieved expressed PPC 2011-2012 82% (having a cancer diagnosis made it 25% more likely) 2011-2012 Actual PPC Home Hospice Hospital Care Home D/C from team Home 351 (77%) 1 61 2 41 Expressed PPC Hospice 127 (69%) 52 6 Hospital 73 (96%) 3 Care Home 8 91 (81%) 14 Not expressed 11 111 3 55
Impact of ACP Reduc3on in inappropriate hospital admissions Reduc3on in unwanted clinical interven3ons Beder communica3on between pa3ent, carers and professionals Especially helpful out of hours and when pa3ent unable to express wishes PPC achieved for more pa3ents Reduced inappropriate costs
General Medical Council (2010) Treatment and care towards the end of life: good prac3ce in decision making. London: GMC. Available from: hdp://www.gmcuk.org/sta3c/documents/content/end_of_life.pdf Capacity, care planning and advance care planning in life limi3ng illness. A guide for Health and Social Care Staff. Available from: hdp://www.endoflifecareforadults.nhs.uk/publica3ons/pubacpguide Finding the words. A Na3onal End of Life Care Programme publica3on. Available from: hdp://www.endoflifecareforadults.nhs.uk/publica3ons/finding- the- words Preferred Priori3es for Care. A tool for discussion and recording end of life wishes and preferences. Available from: hdp://www.endoflifecareforadults.nhs.uk/tools/coretools/ preferredpriori3esforcare Royal College of Physicians (2009) Concise Guidance to Good Prac3ce, number 12. Advance Care Planning. London: RCP. Available from: hdp://www.nhs.uk/planners/end- of- life- care/pages/planning- ahead.aspx hdp://www.adrtnhs.co.uk hdp://www.dyingmaders.org/
Contact details The Martlets Hospice 01273 273400 The Macmillan Community Team 01273 885000 simone.ali@nhs.net BSUH Specialist PalliaAve Care Team 01273 523021 louise.mason@bsuh.nhs.uk