Advance Care Planning Jill Wall: Clinical Nurse Specialist in Palliative Care @Central Campus
Definition of Advanced Care Planning. Advanced care planning means looking and thinking about possible future options for health care and expressing preferences. It is particularly pertinent at the end of life.
By putting the patient and carer at the centre of the plan it is hoped that autonomy and control are fostered factors that many patients perceive as being taken away from them during the terminal stages of disease (Storey et al, 2003)
Advance Care Plan A voluntary process of discussion & review An opportunity to set on record their choices or decisions relating to their care & treatment Helps someone with capacity to anticipate how their condition may affect them in the future should they lose mental capacity & decide what they would want Patient may choose to involve family when considering options
Advance Care Planning Discussions Need to respect that some patients may not want to have these conversations Be sure that this excuse is not used when HCPs feel uncomfortable about having these discussions Triggers for initiating conversations can be identified e.g. frequent hospital admissions, the patient might initiate conversation themselves, but this cannot be relied upon
Examples of when ACP may be appropriate Mrs Adams-54 year old woman with breast cancer and bone metastases. She develops spinal cord compression and has radiotherapy. She is now recognising she has progressive disease and may wish to discuss her future care Mr Jones-78, with heart failure and increasing breathlessness who is finding looking after himself at home difficult. He has recently been in hospital twice in the last 3 months and is worried about the future Mr Crane-81, with COPD, heart failure and frailty. He is forgetful and is worried how he will cope at home.
Advance Care Plan Written recorded expressions of future preferences for care & treatment General reflection of a person s hopes, general beliefs/values & wishes for care Should only be used to inform a best interest decision if the person has lost capacity Are not legally binding in the same way as an advance decision to refuse treatment
Lasting Power of Attorney (LPA) Type One Property and financial Affairs LPA Made whilst person has capacity Only active if person loses capacity Replaces the previous Enduring power of attorney Enduring power of Attorney may still be used if made & signed before October 2007 Does NOT have the power to make health decisions
Lasting Power of Attorney Type 2 A Personal Welfare LPA Made whilst person has capacity Only active if person loses capacity Acts according to best interests Can be extended to life sustaining treatment decisions Personal Welfare LPA including health. Must be expressly contained in the original application
Registering an LPA Must be registered with the Office of the Public Guardian There is a cost implication Can take weeks/months to be finalised so is not a quick solution
How do we currently document a patient s wishes? Some examples: Documentation is in the hospital records Written in the Care home plan of care Written in GPs records Patient has told all the care home staff District Nurse knows Patient s son knows
What happens if the patient deteriorates and.. It is out of hours GP on holiday/district nurse on days off Patient is not in his usual place of residence Staff not familiar with patient Patient s son does not agree with their wishes Nurse cannot find any information about patient s wishes- records are five inches thick - so difficult to find anything!
Communicating this information Need to be accessible (with patient s permission) give choices/initiates discussion Recommended that all advance decision documents for an individual are kept together Need systems for sharing information Acknowledges MCA Identifies educational needs of patients/ carers and professionals Whose responsibility is it to initiate discussions?
Preferred Priorities of Care The PPC is a tool to determine and record a person s wishes in relation to their care and ultimate place of death. It is a nationally recognised tool
Benefits of using the PPC Patients and families have choices Enables initiation of end of life care decisions Facilitates recording of preferences and priorities Acknowledges mental capacity Can help focus patient care and prevent unwanted hospital admissions PPC document here
Prognostic indicators/triggers for consideration of patients in need of supportive/palliative care. Is the person considered to be in the last year, six months or three months of life? If yes, what measures might be taken to improve their quality of life now and in preparation for the dying stage? Choice/Need the person makes a choice for comfort or is in need of supportive/palliative care Clinical indicators specific indicators of advanced disease for 3 main groups; cancer, organ failure, frail elderly/dementia
End of Life Register What it is? End of Life register in the GP practice How it can be used? Can be set up in a care home to ensure that best care is facilitated. This should include preferred place of care discussions, DNACPR, etc
What you & your team can do in the community/care home/hospital Identify those patients in the last twelve months of life Discuss with the GP/Consultant around patient diagnosis Discuss with relatives Discuss with the patient
Do not attempt cardiopulmonary Objectives: resuscitation To avoid inappropriate CPR attempts and allow natural death Ensure that staff are aware of their responsibilities in relation to DNACPR decisions and processes and are supported in their roles so that patients receive appropriate care Achieve a co-ordinated approach across different services so that transfer of patients between services does not compromise dignity, quality of care or patient choice
This is especially important for people who are either Dying from advanced progressive disease for whom CPR is not a viable treatment option People with life-limiting illnesses for whom CPR may still be a viable treatment option who may wish to refuse CPR in the future. This is where an Advance Decision to Refuse Treatment is used
Key principles of DNACPR CPR is a medical treatment and cannot be demanded by patients or their family To offer futile treatments is ethically inappropriate Although good practice, there is no obligation to explicitly discuss a DNACPR decision with dying patients
Key principles continued Where CPR is a viable treatment option, a person with capacity can refuse it this is legally binding Where CPR is a viable option but a person lacks the capacity to refuse it, the decision rests with the healthcare team Family and carers have a role in informing a healthcare team decision but they should not be asked to make the decision (unless they have LPA specific to this situation) DNACPR decisions apply only to CPR and not to any other aspects of treatment, eg. analgesia, antibiotics, oxygen, drugs for symptom control
References www.alzheimers.org/site/scripts/documents_info. php National Council for Palliative Care (2008) : Advance decisions to refuse treatment : A guide for health and social care professionals www.endoflifecareforadults.nhs.uk National End of Life Care Programme (2012) End of Life Care Coordination: Record Keeping Advice www.endoflifecareforadults.nhs.uk