One Chance to Get it Right: Implementing the new priorities of Care for the Dying Person Dr Susan Salt, Medical Director Trinity Hospice, Blackpool
Outline of the talk Brief look at what led to this point.. Brief look at the new priorities of care The foundations going forward
Care of the Dying recent past?
The Liverpool Care Pathway (LCP) Developed by palliative care specialists in Liverpool to improve the care of the dying in an acute hospital Based on sound medical, nursing and ethical principles and clinical experience Rolled out across the UK Contained an audit trail Followed the patient across care settings Check list of what good care should be
So the Department of Health held an inquiry.. https://www.gov.uk/government/publications/re view-of-liverpool-care-pathway-for-dyingpatients
LCP was perceived by some of its users not as a document, nor as a guideline, but most frequently as a SET OF INSTRUCTIONS AND PRESCRIPTIONS, THAT IS TO SAY A PROTOCOL. with unintended consequences
and During this Review, the panel heard of far too many instances where the commencement of the LCP has led to a WITHDRAWAL OF CARE, in some cases with relatives and carers left to do the caring themselves as much as they could.
One Chance to Get it Right https://www.gov.uk/governme nt/publications/liverpoolcare-pathway-reviewresponse-to-recommendations
A given.. Caring with compassion for people at the end of their lives should be the aim of all doctors, nurses and healthcare staff. Good care for the dying is as important as good care at any other time of life.
Individualised End of Life Care Plan - Priority One The possibility that a person may die in the next few days or hours is recognised and communicated clearly. Decisions made and actions taken are in accordance with the person s needs and wishes Decisions made are regularly reviewed and revised as needed
Individualised End of Life Care Plan - Priority Two There is effective and sensitive communication between staff and the dying person and those identified as important to them Documented in the clinical record Outstanding concerns that have been identified by the dying person or nominated individual are documented and an appropriate action plan to address these is drawn up
Individualised End of Life Care Plan - Priority Three The dying person and those identified as important to them are involved in decisions about treatment and care to the extent that they wish to be If the person lacks capacity all care/ treatment is given in the persons best interests. A communication plan is agreed with the dying person, those important to then and the healthcare team
Individualised End of Life Care Plan - Priority Four The needs of those identified as important to the dying person are actively explored, respected and met as far as possible
Individualised End of Life Care Plan - Priority Five An individual care plan, which includes food, drink, symptom control and psychological, social and spiritual support is agreed co-ordinated and delivered with compassion
So there should be Anticipatory prescribing for symptoms of pain, respiratory tract secretions, agitation, nausea and dyspnoea. Discussion of the use of a syringe pump before it is commenced. Reviewing clinical interventions including nursing observations to ensure they are in the best interests of the dying person. Reviewing hydration and nutrition and documentation of a clear plan on how this will be supported appropriately.
Care in the last days / hours It is the responsibility of all clinicians to ensure that all people who are dying receive good end of life care to include:- Regular assessment Good symptom control & anticipatory prescribing Comfort measures in a timely & compassionate manner Effective & empathic communication with dying person & family Psychological, social & spiritual support Dignified & respectful care at all times including after death
Challenges in the current health care system looks to.. Standardise care with protocols and pathways Make decisions based on evidence based practice Manage the disease not the illness Is death averse Avoids uncertainty
North West Model for End of Life Increasing decline (<6 months) Increasing decline (last weeks of life) Advancing disease (<1 year) Holistic patient assessment (inc. Review care plan (including Review care plan (including Initiate Individualised end of life physical, psychological, social & social care needs) ACP, Preferred Priorities for Care care plan spiritual domains) (PPC)) Carer needs assessment Optimise medications Rationalise medications Confirm Preferred Place of Death (PPD) Last days of life First days after death Bereavement Verification of death Certification of death Bereavement information booklet given to relatives Bereavement support Counselling support Psychological support Consider Advance Care Planning (ACP) discussion Inclusion on Supportive & Palliative Care Register (Gold Standards Framework, GSF) Refer to community services: DN / Matron / Social Worker Check benefits (DLA/AA) Initiate ACP discussion Check benefits (DLA/AA/DS1500) Consider Continuing Health Care (CHC) funding Consider DNAR Just in case box discussed, prescribed and supplied Support arranged for end of life care at home Consider CHC fast track, already receiving CHC Consider DNAR, if not already competed if not Just in case box discussed, prescribed and supplied, if not alredy in situ Complete DNACPR Update OOH & NWAS: PPD, Special Notes & DNAR Identify at risk bereavement Notify OOH & NWAS GP: Notify hospital team Hospital: Notify GP / DN Discuss After Death Significant Event Analysis (SEA), where appropriate Refer at risk bereavement Update Out of Hours (OOH)& Ambulance Service (NWAS): ACP & Special Notes Update OOH & NWAS: ACP, Special Notes & DNAR Update OOH & NWAS: ACP, Special Notes & DNAR
We do only have one chance to get it right..
End of life care will become ever more complex Chronic medical conditions with considerable symptom burdens Multiple medical conditions Multiple care agencies Preference to be cared for in the community not hospital Patient choice
Trying to fit End of Life Care into a neat set of guidelines or a plan will always be challenging Death is messy, unpredictable and distressing The hours of care needed does not always correlate with the complexity of the illness journey Easy to do badly and add to suffering even if following the guidelines The small things may have a bigger impact than the technical care given Distress of poor care may be hidden as the patient can t complain and relatives may be too distraught to do so
A different agenda the professional and the lay person? Understanding of mortality (death) An academic reality or unthinkable inevitability Understanding of illness Set of biological phenomena or life experience Understanding of why we get ill Predictable, replicable patho-physiology or personal experience of what is happening to me How we deal with emotions like shame, blame or fear Unacknowledged or a key driver to my actions
About a partnership You and me (people with unique skills and experience) Being generous with our time Listening with compassion Walking alongside not doing to Acknowledging when we cannot fix things Management Environment in which to care Enabling and empowering staff to value the Individual Systems that working in partnership Patient and family (people with unique skills and experience) Brave enough Trusting Receptive
So what is good end of life, palliative care.. an organisation / individual which recognises the patient in the face of the sickness, who respects the patient s strength despite the fear, who accompanies the patients through the territory of illness..and who honours the meaning of the patient s suffering provides not just knowledge of diseases but knowledge of the direction toward health or the ability to live authentically without health. (Charon 2006)
Thank you for listening.. Any Questions?
References Charon R (2006) Narrative Medicine honouring the stories of illness. Oxford University Press Silverman J, Kurtz S & Draper J (2005). Skills for communicating with patients. Oxford University Press Thomas K (2003). Caring for the dying at home. Radcliffe Medical Press End of Life Care Strategy (2008) Neuberger (2013) Independent review of the Liverpool Care Pathway. More Care Less Pathway. End of Life Care Strategy (2008) Leadership Alliance for the Care of Dying People (2014) One chance to get it right. Improving people s experience of care in the last few days and hours of life. Manual for Cancer Services: specialist palliative care measures (2012)