Advance Care Planning Amanda Young (PhD) Lead Palliative Care Nurse NELFT (Havering) RGN, Bsc (Hons) Community nursing, Msc Nurse Education
Aims of session To put into context the rationale for having advance care plans, nationally and locally. To discuss the difference between an advance care plan and an advance decision to refuse treatment ADRT. To discuss the ethical implications of advance care planning
The house of End of life Care
CQC Key Line of Enquiry E3 Do staff have the skills, knowledge and experience to deliver effective care and treatment? Are staff trained in ACP?
Confidence Questionnaire ZDogg MD Aint no way to die
All People approaching the end of life, and their carers, should be entitled to: Have their needs assessed by a professional with appropriate expertise. Have a care plan which records their preferences and the choices they would like to make. The plan should be reviewed as their condition changes Be involved in decisions about treatments prescribed for them and having option to say no. (DNACPR) Know systems are in place to ensure that information about needs and preferences can be shared with permission. (Palliative care register)
What is an advance care plan?
Advance Decisions to Refuse Treatment Statement of wishes and preferences Advance Care Planning
Advance Care Planning Opens up discussion about what choices a person would like to make about their future care: Where they would like it to happen (limitations of requests for life sustaining treatments) What they would like not to happen To have the opportunity to have discussions about care at the end of life well in advance
True or False Advance Care Plans: Have to be personally recorded by the person affected. Have to be recorded within a specific document. The persons signature needs to be witnessed. All patients coming to the end of life have to have an advance care plan. The ACP discussion can be instigated by any team member. Lasting Power of Attorneys can make ACP decisions.
When is it appropriate Diagnosis of metastatic disease Discontinuing chemotherapy Surprise Question Persons choice/need Clinical indicator Multiple hospital admissions Admission to a care home After exacerbation Reduced functionality/adl
Exercise What ethical issues are associated with advance care planning?
ACP and Vulnerability There may be considered safeguarding issues when dealing with decisions to withdraw treatments, especially when families are in conflict. Independent Mental Capacity Advocate (IMCA) can provide an independent point of view. Please give any examples where an IMCA has been involved in decision making.
Anticipatory Care Plan Core information recorded on electronic register or Care Plan Instructions for decline in condition Patients understanding of condition Preferred place of care/death DNACPR Power of attorney details
Advance Decisions to Refuse Treatment Legally binding document Formalizing what a person does NOT want to happen to them. Related to mental capacity and living wills Lasting Power of Attorney Choice over what a person would like to happen if they can no longer make the decision themselves. http://www.adrt.nhs.uk/
Exercise Discuss when you might decide to make an advance decision.
Mental Capacity and ADRT ADTR enables a person aged 18 or over to refuse specific treatment in the future when they no longer have capacity, or lose capacity. Must be valid and applicable to current circumstances Must state which treatment is being refused (they can cancel their decision) In writing (it can be written by someone else in medical records) Signed and witnessed State clearly that the decision applies even if life is at risk
Is it valid? HCP must: Find out if the person: Has done anything that clearly goes against their ADRT Has withdrawn their decision Has subsequently conferred the power to make the decision on an attorney Or would have changed their decision if they had known more about the current circumstances The HCP may conclude that an ADRT does not exist but an expression of wishes when a best interest decision will be required Even if HCP disagrees with the decision, care not be abandoned ADRT may not be applicable if patient is detained under the MH Act.
Mental Capacity Act 2005 A presumption of capacity-unless proved otherwise The right for support for individuals to make their own decisions and given help if they cannot. Retain the right to make what seems like eccentric or unwise decisions Anything done on behalf of people without capacity must be in their best interests Anything done on behalf of people without capacity should be the least restrictive of their basic rights and freedoms.
Mental Capacity to make decisions Does the person have a general understanding of what decision they need to make and why they need to make it? Do they understand the likely consequences of making, or not making, this decision? Can they understand and process information about the decision? And can they use it to help them make a decision?
The decision maker must take into consideration The person s past and present wishes, feelings and in particular any relevant written statements made by him when he/she had capacity The beliefs and values that would be likely to influence his decision if he had capacity The other factors that he would be likely to consider if he were able to do so.
Outcomes related to ADRT Person/patient related Reassurance that decisions will be respected and acted upon The refusal of life sustaining treatment can lead to a natural death in the preferred place. Peace of mind knowing families will not need to make decisions Better communication Can have better bereavement outcomes Enhanced autonomy
Outcomes -Professionals Better understanding of patient choice Better informed and clearly documented/communicated decisions Staff empowered to protect autonomy and support the patients choice by law and policy of their employing organization Support for good clinical practice increasing the chance for job satisfaction
Outcomes- organizations Clearly defined responsibility to ensure adherence to the MCA and code of practice Fulfil clinical governance commitment to pursue good clinical practice whilst correctly managing risk Prevent and possible unnecessary admission to hospital and treatments Reduce costs of unscheduled care, help predict clinical service demand
Discussions can lead to Legal Lasting power of attorney Wills Personal Advance decision to refuse treatment Self management plan Clinical Anticipatory care ADRT DNACPR Electronic register
Exercise- What barriers might there be for not discussing an advance care plan? Discuss when the right time to discuss advance care planning is.
Barriers for patients Anxiety at discussing death Patient feels family will know what to do Lack of knowledge, document does not make sense Perception that they are complex Perception that once complete will not be followed Previous negative experiences Ethnic or cultural barriers
Physician barriers Lack of time Lack of communication skills Perceived ignorance of patients Perception that their patients are not sick enough
Exercise Compare Advance Care Plans
Would you trust your nearest and dearest to know what you wanted if you were unable to speak for yourself??
It all ADSE up Ask: have the ACP discussion Document: the outcomes of the conversation Share: the persons views with family and professional carers Evaluate: and audit the outcomes of EOLC to enable services to be reviewed and revised by commissioners
Denis Parsons Burkitt Better to build a fence at the top of the cliff than park an ambulance at the bottom. (1957)
Confidence questionnaire
References Thomas, K. Lobo, B. 2010 Advance Care Planning in End of Life Care Oxford University press. Storey, L., Wood, J., & Clark, D. (2006). Developing an evaluation strategy for Preferred Place of Care. Progress in Palliative Care, 14(3), 120-3. Wood, J., Storey, L., & Clark, D. (2007). Preferred Place of Care: an analysis of the 'first 100' patient assessments. Palliative Medicine,21(5), 449-50. http://www.sahealth.sa.gov.au/wps/wcm/connect/ 784f538044b702389c779ed3777922da/completion guide-pir-sahealth- 1002.doc?MOD=AJPERES&CACHEID=784f538044b70 2389c779ed3777922da Alzheimer s society/ Innovations in dementia www.innovationsin dementia.org.uk www.cqc.org.uk cqc.org.uk Lothian Advance Care Planning Project 2012