1. Implementing the Stroke Palliative Approach Pathway
Pathway Training and Information Session
Welcome attendees and introduce self.

2. Aim
To provide staff caring for palliative stroke patients with the knowledge and skills to implement the Stroke Palliative Approach Pathway (SPAP), including discharge criteria
The aim of the talk today is to provide staff with the knowledge to use the SPAP in their practice on the ward. This includes information regarding the discharge of patients home if that is the families choice and it is feasible.

3. Session Outline Review the principles of palliative care
Care pathways and why we are utilising them
How to utilise the SPAP
Possibility of discharge home and how this will this be raised with carers / families
Process of discharge
Resources developed to support use of the SPAP
Go thorough the session outline point by point (fly – ins) and explain that this is what will be examined today.

4. Principles of palliative care
Provides relief from pain and other distressing symptoms
Affirms life and regards death as a normal process
Intends to neither hasten nor postpone death
Integrates the psychological and spiritual aspects of patient care
Offers a support system to help patients live as actively as possible until death
Offers a support system to help the family cope during the patient’s illness and in their own bereavement
Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated
Will enhance quality of life, and may also positively influence the course of illness
World Health Organisation (2009) WHO Definition of Palliative Care Geneva
We will review the World Health Organisation principles of palliative care. (Go through points as fly-ins). This reinforces what we are trying to achieve when a palliative approach to care is commenced and gives us the framework to begin thinking about palliative care in the stroke population.

5. Palliative Stroke Care
WHY
Growing interest in the role of palliative care in non-malignant disease, including stroke
Despite the high mortality and morbidity level in stroke, evidence to guide palliative care in this area is lacking
Limited information available on the needs of carers, especially in regard to possibility of discharge home
1) Palliative care has been predominantly associated with patient’s dying as a consequence of malignant disease.
2) There is a paucity of literature to inform us about the palliative needs of stroke patients, considering approximately 20% of all stroke patients die as a result of their stroke in the 1st 30 days, with half of these deaths occurring in the 1st 7 days. (If possible include figures from your service. E.g. at Royal Melbourne Hospital in patients were admitted with AIS or PICH. 87 (16%) of these patients died in hospital during that admission). The sudden and unpredictable nature of severe stroke means that decisions regarding palliative management and goals of care often need to be made quickly.
3) Discharge is not a common outcome for palliative stroke patients, however the location of dying should be discussed with families to determine family preference and feasibility. This will be discussed further later in the talk.

6. Palliative Stroke Care
Why develop a pathway?
Supports National Stroke Foundation recommendations (1.12)
Clinical Guidelines for Acute Stroke Management National Stroke Foundation 2007
Palliative care in stroke was first mentioned in the NSF guidelines in These guidelines include recommendations that 1) a pathway for acute palliative care may be used to improve palliation for people dying after acute stroke, 2) an accurate assessment of imminent death should be made for patients with severe stroke or those who are deteriorating and any assessment must consider prognostic risk factors along with the wishes of the patient and their family/carer, 3) acute stroke patients should have access to specialist palliative care services as needed 4) stroke patients should have care consistent with the principles and philosophies of palliative care.

7. Palliative Stroke Care
Supports recommendation nine of the Stroke Care Strategy for Victoria
Appropriate and culturally sensitive palliative care should be provided and communication with carers / family members undertaken in accordance with existing national guidelines and Strengthening palliative care – policy for health and community care providers
The Stroke Care Strategy for Victoria provides a framework for the delivery of public acute and sub-acute services in Victoria

8. Care Pathways
We will look at care pathways; why we are utilising them, how to utilise them and the benefits expected from their use.

9. Care Pathways Map out a patient’s journey
‘the right people, doing the right things, in the right order, at the right time, in the right place, with the right outcome’
Care pathways should be realistic and not prescriptive

10. Care Pathways Main aims of utilisation: Help improve clinical outcomes
Support the introduction of evidence-based medicine and use of clinical guidelines
Improve multidisciplinary communication and care planning
Decrease unwanted practice variations
Improve clinician – patient / family communication and patient satisfaction
Help ensure quality of care and provide a means of continuous quality improvement
They should help improve clinical outcomes for both patients and families
They support evidence-based guidelines e.g. ceasing fluids, discontinuing non-essential medications, writing up comfort medications.
Decrease unwanted practice variations by replacing the existing Nursing Care Plan (NCP) which can be staff dependent
Improve clinician – patient /family communication by ensuring that all staff are aware of what has been discussed with the family and that family are aware of a palliative approach to care.
Important to document what is been done to assist in quality improvement.

11. Care Pathways Benefits:
Reduce variations in care from case to case (and consultant to consultant) in the same department
Facilitate the introduction of local protocols based on research evidence into clinical practice
Encourage multidisciplinary communication and care planning
Enable new staff to learn quickly the key interventions for specific conditions and to appreciate likely variations
Embed clinical audit into daily practice
The following sum up the benefits of care pathways

12. Development of Stroke Palliative Approach Pathway (SPAP)
Based on the Liverpool Care Pathway (LCP) and adapted for local use
Goal of pathway:
Meet the needs of patients and their carers by providing timely assessment, education and access to palliative care services as required
The SPAP is based on the Liverpool Care Pathway (LCP), an Integrated Care Pathway developed in the 1990’s in the United Kingdom to transfer care practices from hospice to other care settings. It provides guidance on aspects of care including discontinuation of non-essential medications and anticipatory prescribing of medications. It focuses on the physical, social, religious and spiritual needs of the patient and family / carers.

13. Stroke Palliative Approach Pathway (SPAP)
Introduction
Sets out the objective, criteria and use of the pathway
Section 1
Initial assessment and initiation of the palliative approach
Section 2
Ongoing care and assessment
Section 3
Discharge home
Section 4
Verification of death
Reinforce that the SPAP is a guide only, and does not replace clinical judgement.
Prior to the pathway commencing the patient must be documented for a palliative approach in notes and the family must be informed that a palliative approach has been adopted.
Go through each section of the pathway with the attendees and discuss.
Introduction: sets out the objective, criteria and use of the pathway. The pathway consists of goals to be achieved ‘A’ or varianced ‘V’. If a goal is ‘V’ the reason must be documented in the patients notes. Reinforce that if a goal is ‘V’ this should not be viewed as a negative, but reflects that individual care, assessment and clinical needs of each patient and the needs of the family and carer are being regularly assessed and met.
Section 1: Should be completed as soon as possible after a palliative approach to care has been documented in the medical notes and it has been discussed with the family. This section should be completed by the nurse caring for the patient at the time a palliative approach is commenced.
Section 2: Incorporates ongoing care and assessment goals. Each goal is set out with prompts provided to guide care and each goal should be marked each shift with ‘A’ Achieved or ‘V’ Variance. Reason for ‘V’ should be recorded in the patient medical record. Each page contains space for 2 days, with the provision of an insert with 4 more days if needed.
Section 1a, location of dying, needs to be discussed with the family by senior staff and documented.
Section 3 contains information regarding discharge home. It needs to be established as soon as possible if this is what is wanted by the family and it is a feasible option in regard to carer ability and home set up. The discussion regarding location of dying should be done by a senior staff member who is aware of the home situation and carer wishes. Mention that this section will be discussed further in following slides.
Section 4 to be completed after death. Mention why is important re documentation

14. Utilisation of the SPAP
When to commence the pathway
How to utilise the pathway
Who completes each sections
Reinforce again:
When to commence the pathway – when it has been documented in the patient medical record that a palliative approach is to be commenced and the family are aware of this.
The pathway is utilised by completing each goal with either ‘A’ Achieved or ‘V’ Variance. If there is a ‘V’ the reason should be documented in the patient medical record.
How to complete the pathway: Section 1 – Completed by the nurse caring for the patient when a palliative approach is initially documented. Section 2 –Completed by staff caring for the patient on each successive shift. Section 1a to be completed by appropriate senior staff. Section 3 – Completed if the patient is to be discharged home to die. Section 4 - Completed after the patient has died by the person caring for the patient at the time.

15. Resources developed Carer brochures
Palliative care after stroke – Information for families and carers
Providing end of life care at home for your family member – Information for families and carers
What to do when someone dies – Information for families, friends and carers
Show attendees the brochures developed and go through each one.
1) “Palliative care after stroke - Family and carer information”. This is to be provided by staff to family/carers after discussion that a palliative approach to care has been commenced. Go through the brochure and describe briefly each section.
2) “Palliative care after stroke – Providing care at home for your family member”. This should be given to families who are thinking of taking their relative home to die. It sets out what is involved and what processes will need to be in place. Go through the brochure with attendees.
3) “What to do when someone dies”. This can be provided to families just prior to or after death. Go through the sections of the brochure and highlight that it includes information on what to expect after the person has died such as making funeral arrangements, practical information regarding Wills and financial support, who to contact and post mortem or coroner involvement. It also provides information regarding grief and useful contacts if needed.

16. Resources developed Where they will be kept
Who will give resources out
Explain where the SPAP and brochures will be kept on the ward.
Outline staff members responsible for giving out resources.

17. Discharge Home
This section will further discuss the process of determining a families preference for location of dying and the process of discharge home for a palliative stroke patient

18. Why examine the process of discharge for palliative stroke patients?
Population which has not been greatly examined from a discharge process perspective
To facilitate a smooth and efficient discharge for palliative stroke patients whose families would like to take their relative home to die
To guide staff in the process of discharging palliative stroke patients home (via the pathway)
The aim is not to persuade or ask families to care for their family member at home but rather attempt to fulfil the families wishes should they want to take their relative home
The stroke palliative population have not been greatly examined from a discharge perspective. However, the ability to facilitate discharge home (should this be a families preference) can be of high benefit in honouring a patients advance care directive, addressing cultural and spiritual needs or enabling end of life care in a private and familiar environment.
As discharge of patients from this patient group is not common, the pathway aims to guide staff in the factors to consider during discharge planning to ensure the process is as smooth and efficient as possible.
It is important to reiterate that this section is in no means designed to ask or persuade families to take their relative home, it is aimed at ensuring a patient and families preferences are considered.
Should discharge home be voiced as the preferred option, discussion about feasibility should ensue as discharge home may not always be realistic.

19. Resources to Support the Discharge of Palliative Stroke Patients
‘Providing end of life care at home for your family member – Information for families and carers’ brochure
Stroke Palliative Approach Pathway - Section 3
The following resources are available to support discharge home (if this is preferred by the family and determined to be feasible by the multidisciplinary team).
As mentioned earlier, the brochure provides information on areas relevant to providing care at home such as practical care, assistance available, caring for the carer and how to recognise death has occurred and what to do. The brochure also includes a section for including important contact phone numbers. As mentioned, Section 3 in the pathway provides the goals and objectives to guide staff through the process of discharge.
** Note: At Royal Melbourne Hospital, we have also used further supporting resources (generic forms used within wider clinical groups) including a carer training checklist and equipment summary letter. The Carer Training Checklist is used to identify carer training needs and sign off that training has been provided and carer appears competent and comfortable. The equipment summary letter provides families with an overview of what equipment has been provided and the source (and contact details) for each item – allowing families to contact the relevant equipment provider, at their convenience, after the patients death to arrange return of the equipment.

20. Considerations for the discharge of a palliative stroke patient
The exact process will vary for each individual patient
A discussion must occur between appropriate senior staff and
the patient’s family / carer to determine proposed location of dying (and
documented in Section 1a of the pathway)
If the proposed location of dying is at home, this can only be confirmed
following all relevant Allied Health assessments (i.e. OT assessment of home
environment)
Potential differences to a ‘standard’ acute discharge home
High carer needs (i.e. training, support)
- Family emotion / grief
- Short time frame to organise discharge
- Anticipate only short period (i.e. days) at home prior to death
As with any patient discharge, the exact process will vary.
It is crucial to ensure that Section 1a has been completed and the feasibility of the preferred location has been considered by appropriate senior staff.
The proposed location of dying must then be agreed upon by the multidisciplinary team, prior to Section 3 being commenced.
Agreement from the multidisciplinary team needs to ensure consideration of relevant allied health assessments including such aspects as the suitability of the home set up and the availability of suitable carers. Following all relevant allied health assessments, the multidisciplinary team can confirm the proposed location of dying.
It is important to consider the differences which this population group may have to a ‘standard’ acute discharge home – severe stroke is a traumatic event which may not allow time for the family to prepare or accept the situation.
It is unlikely the family will have any previous carer training and therefore it can be challenging, although achievable, teaching families a great deal of information within a short timeframe, at a time when they have a high level of emotion and grief.
It is important to consider however, that only a short period of days are anticipated at home prior to death, therefore issues such as chronic carer exhaustion or ensuring a carer who can sustain care for a long period may not be as essential.

21. Conclusion
The SPAP should be utilised for all palliative stroke patients after documentation in the medical record and discussion with the family
Resources should be provided to family / carers as needed
Reinforce that the SPAP is to be used as a guide and does not replace clinical judgement