Advance Care Planning in Haemodialysis patients-Staff engagement versus patient wishes Susan Heatley Renal Matron

What is Advanced Care Planning? “A way of exploring your wishes and preferences for your future care and enabling others to know about them” (NHS Direct 2011)

Context Escalating health care, concerns about an ageing population and perceptions that death and dying lacks the quality of basic human dignity. ACP identified as a means of facilitating a ‘good’ death, enable access to palliative care, reduce hospital admissions and interventionist treatment (DH 2008, NEoLc programme, 2004)

Strategic Focus Advance care planning (ACP) is a key element of the End of Life Care (EoLC) Pathway and a key element of EoLC Quality Innovation Productivity and Prevention work. Ensuring people’s wishes are known so that they can receive the care they wish in the location of their choosing where possible is an essential part of the national, regional and local EoLC Strategies (National EoLC Programme ACP: A Guide for Health and Social Care Staff)

Aspects of Advance Care Planning Opening up the conversation Explore patients options Identify patients wishes and preferences Letting people know patients wishes Being in control of their EoLc plan Helps Carers to become involved in their loved one’s EoLc plan

What does the evidence say patients want from ACP? To have someone to have the conversation with, someone to listen to me and my wishes Opportunity to be able to talk about my death with those caring for me, be able to plan my EoLc To be provided with time to say Goodbye to important people in my life To be the given opportunity to write down my choice of where I want to die To have my family prepared for my death To inform my loved ones of my wishes for treatment To write down what I want when nearing the end of my life ie, to be free from pain, to die with dignity

What do Staff Say is their Role in ACP with their Patients? Be an advocate for the patients and their carers Support patients and their carers in ensuring their wishes are granted at the end of their lives Start the ‘conversation’, listen to patients By knowing what they want will assist me in helping patients to die with dignity, pain free and comfortable Talk to patients and their carers about their EoLc plans, help them to write it down

Start the conversation Write down choices Ensure plans are in place Wishes are granted Die with dignity, pain free Both Nurses and their patients share the same perspectives and the need for ACP

Why Do ACP with Patients Undergoing Haemodialysis?  Increasing number of elderly patients with co-existing complex co- morbidities entering hospital haemodialysis programmes (Renal Registry 2009, )  Life expectancy of patients undergoing haemodialysis aged 75 years is 2 years (Renal Registry 2009)  Evidence has identified that the vast majority of these patients die within acute care settings-with no reference made to their EoLc wishes (NHS Kidney Care 2010)  Renal dialysis nurses have a unique opportunity, based on their long term nurse/patient relationships to address patients EoLc wishes through ACP (Calvin 2004, Harwood et al. 2005, Davison 2009)

Why ACP not a Concept Renal Staff Engage in? FEAR-of upsetting patients Evidence Renal patients welcome ACP and expect medical and nursing staff to initiate these discussions (Davison & Thorngrund 2007) No evidence that ACP takes away hope in renal patients (Davison 2009, Rabetoy 2007, Yee et al. 2011) Renal patients are not more depressed or anxious following end of life care discussions (Davison 2009, Rabetoy 2007, Yee et al. 2011)

Why ACP not a Concept Renal Staff Engage in? Cont …. TIMING-Ambiguity of starting the conversation CULTURAL-Lack of recognition of cultural and religious practices in relation to EoLc

Why ACP not a Concept Renal Staff Engage in? Cont…. INSTITUITIONAL-workload, culture of working patterns on dialysis unit, nurse-patient relationships GAPS IN KNOWLEDGE-education and training needs relating to EoLc, ACP CONFIDENCE-communication skills, Role Clarification, MDT responsibilities

A major finding in the Evidence Nurses personal and professional experiences with ACP greatly affected their confidence, ability, skill and willingness to engage in ACP discussions with their patients

Addressing the Challenges  Dealing with death and dying are part of the nature of nursing  High Mortality of renal patients Increasing confidence through education, training, communication skills training Responsibility and opportunities provided by academic institutions Cultural Competency embedded in education strategies Recognition of educational needs of staff by managers Role modelling

Meeting the EoLc needs of renal patients through ACP ACP project, CFC registers Communication Skills training, sage and thyme courses Hospice staff exchange programme Renal staff education and training Sharing practice and renal patient EoLc needs networking with Primary care teams

Where are we now? 12 patients placed on CFC register All had ACP in place, following regular discussions with the patient family and GP Six patients died in acute care setting following sudden and unexpected deterioration Six patients died in the place of their choice-home or hospice

Letter from wife and son of a haemodialysis patient who died ‘ Although this was a very difficult and often upsetting time as ‘George’s’ health deteriorated we felt well supported as a family and took comfort in being able to be involved in important decision making, especially towards the end’. ‘ As you can appreciate this was a very difficult time for us but dad had wrote down his wishes and knowing what he wanted help relieve the burden for us and allowed us to be able to give dad his wishes at the end of his life’.

Thank you