Sharing Current Scottish Practice
This blog provides an opportunity for people to share examples of current Scottish palliative care practice that might be of interest to the palliative care community more widely. If you know of work underway that might be relevant for sharing on our website, please get in touch.
Supporting Physical Activity Participation in Palliative Care
Introduction
Research evidence shows that remaining physically active throughout life can improve quality of life and the ability to manage at home including activities of daily living and walking .
Physical activity participation is now promoted by government, healthcare providers, charitable and professional bodies. Research evidence and media awareness of these benefits has led to calls for more community based programmes to assist people living with long term conditions to manage their condition, maintain their quality of life for as long as possible and reduce burden on health service resources. ("Move More" above - Macmillan Cancer support 2014)
Our project to develop physical activity programmes for patients with palliative care needs began in 2010 when staff from Macmillan Day Care in Dundee attended the Scottish Macmillan Conference. We learned of the evidence, presented by Dr Anna Campbell, which exists to support physical activity in the control and prevention of symptoms of people living with a cancer diagnosis.
An exercise programme was already available in Macmillan Day Care for patients with advanced chronic obstructive pulmonary disease (COPD). Due to increased awareness of the benefits of exercise and cancer management, some of the patients with lung cancer were also keen to access the exercise class. The task was working out how to implement this generic class for patients with a wide variety of conditions, all at different stages of disease trajectories.
Methods
The opportunity to develop this idea arose through training offered by NHS Tayside ‘Practice Development Apprenticeship Scheme’. This was an opportunity for staff to engage with practice development, and to develop leadership and putting evidence into practice skills, whilst developing and implementing a practice development idea into a practical reality.
The apprenticeship was supported by the Allied Health Professions Directorate in NHS Tayside, led by Dr Jacqui Morris, AHP Research and Practice Development Lead NHS Tayside. The project was funded by monies from the Chief Health Professions Officer and following a recruitment process 6 AHPs were selected.
We met twice monthly for 6 months, learning about systematic review, evidence synthesis, process mapping, project planning and measurement and data analysis. The aim has been to train us to become leaders of practice development in our own clinical areas and assist others to develop their own ideas in service development.
We completed a literature review of the evidence for physical activity in a palliative care setting and discovered there was evidence showing that physical activity not only improves physical performance in most conditions but can also improve quality of life.
The aim of our project was to improve access to the exercise class for all patients and it was important that this service be offered to all patients based on their need not diagnosis. The challenge for us as clinicians working with such a diverse group of patients at varying stages of their disease trajectories was to ensure the intervention was clinically effective, safe and maximised our use of NHS resources.
It became apparent that the pulmonary and cardiac patients were well educated in their ability to self-manage their symptoms, based on their previous experiences of rehabilitation. However, the cancer patients in general were often fearful of physical activity, deconditioned and frequently reported they had spent the last 2 or 3 years ‘mostly sitting’ after treatment stopped. These patients continued to need healthcare professional support to help ‘pick up the pieces’ of their lives and move on.
We knew evidence existed to support appropriate exercise therapy in palliative care but what we didn’t know was how best to deliver it based on patient choices and preferences. The apprenticeship scheme offered the support and direction to ensure we gathered the appropriate evidence so that when the project completed in Oct 2013, we had the evidence which would help direct the service.
To do this it had been crucial to develop a ‘patient engagement plan’ in which we informed, engaged with and then consulted the patients who accessed the day care service.
We provided education sessions to teach patients the benefits of keeping active, set up focus groups with patients and asked what preferences they had for physical activity based on Macmillan Scotland’s recommendation of exercise groups, walking programmes and Chi Gung as suitable forms of physical activity for this patient group.
As we developed information leaflets about the services on offer, patients were asked for feedback throughout the process to ensure that what we were providing was what the patients wanted and understood. Emotional touchpoints were used and conveyed very powerful feelings from the patients relating to remaining physically active. Many of the patients felt very positive about helping to shape the service and were genuinely pleased to be involved.
Unless individual treatment is indicated, we can now offer exercise therapy in a group. In this way we can manage a full day’s list of patients in 1 ½ hours with much added benefit of group therapy and peer support for the patients.
Results
In line with the evidence, our outcome measures show improvement in functional performance and quality of life. Almost all patients have expressed an interest in walking programmes and Chi Gung and Macmillan has now offered Chi Gung training for staff to provide this on a long term basis. This will likely be beneficial for the frailer patients to avoid long periods of inactivity.
In line with patient preferences that we obtained through the project, we are now developing walking routes around Specialist Palliative Care Services. Paths For All have provided walk leader training for staff for the carefully identified bronze, silver and gold walking routes, to help build up patients levels of activity in a supported a safe environment.
Conclusions
As patients with life-limiting conditions are living longer with better symptom control, trying to find new ways to offer evidence based interventions to cope with this predicted increase in demand for rehabilitation is an on-going challenge.
An equitable service for all patients who require it should be offered as early as possible in the patient pathway, optimising the ‘teachable moment’, usually at diagnosis when health behaviour change can be facilitated most readily.
Now, we aim for 100% screening of physical activity levels of all patients referred to the day care unit and offer advice in line with the Scottish Physical Activity Pathway.
The apprenticeship scheme has turned ‘an idea’ into a sustainable reality now and hopefully long term into the future. There has been lots of learning, lots of hard work and lots of reward to see patients benefit, maximising functional performance, minimising symptoms and promoting quality of life, throughout life.
Mandy Trickett, Macmillan Specialist Physiotherapist,NHS Tayside
Contact: email or telephone: 01382 660111 ext 26170
Poster Abstracts of the Month - January
The SPPC Annual Conference in 2014 featured 40 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on:
Anticipatory Care Plans and preferred place of end of life care/death
Anticipatory prescribing at the end-of-life in Edinburgh care homes
Art in Reflective Practice: 16 weeks, Reflections of a trainee in Palliative Medicine
Clinical Psychologists in specialist palliative care: what do we actually do?
Day Therapies: Promoting Health and Well-being in Palliative Care
Anticipatory Care Plans and preferred place of end of life care/death
Author(s) of poster: Yvonne Jones
Introduction: As part of the Children’s Hospice Association Scotland (CHAS) quality programme, an audit was undertaken to assess how frequently the preferred place of care/death for children and young people (CYP) was achieved.
Aim: To establish which of the 54 CYP who died between 1 April 2013 and 31 March 2014 had an Advanced Care Plan (ACP) or Children and Young People’s Acute Deterioration Management Plan (CYPADM). To establish whether end of life care/death occurred in the stated preferred place when one or both were in place.
Findings:
· Five had both an ACP and a CYPADM
· Three had an ACP only
· 22 had a CYPADM only
· 24 had neither an ACP or CYPADM.
· 18 place of care was achieved
· 12 place of care not achieved
· 24 place of care note recorded.
All the CYP who had an ACP in place died in their stated preferred place.
Conclusion: The results show a strong association between having one or both forms completed, and CYP dying in their preferred place and will inform further analysis of why these forms are not in place. This will enable CHAS to make improvements to fulfil preferences at end of life for more families.Anticipatory prescribing at the end-of-life in Edinburgh care homes
Author(s) of poster: Anne M. Finucane, Dorothy McArthur, Hilary Gardner, Scott A. Murray
Background: Common symptoms at the end-of-life include pain, breathlessness, anxiety, respiratory secretions, and nausea. National end-of-life care strategies advocate anticipatory prescribing to manage these symptoms, enhance patient care and reduce unnecessary hospital admissions. Anticipatory prescriptions for four classes of ‘as required’ medicines are recommended for patients in the last days of life - analgesics, anxiolytics, and anti-secretory and anti-emetic medication.
Aims: This study explored the extent to which residents in eight South Edinburgh care homes had anticipatory medications prescribed prior to death. Results Data on 77 residents was collected, 71 of whom died in the care homes (6 died in hospital). Of the 71 who died in the care homes, 59% had some anticipatory planning medications in place: Morphine for analgesia (52%); Midazolam for anxiety and distress (38%); Hyoscine Butylbromide for respiratory secretions (21%); and Levomepromazine or Haloperidol for nausea (23%). Overall, 41% no anticipatory medications prescribed in the last days of life. Only 15% had prescriptions for all four medications.
Conclusions: Many care home residents do not have the recommended anticipatory medications in place in the last days of life and thus may experience inadequate symptom control. Interventions that build the skills and confidence of care home staff to diagnose dying and facilitate such prescribing are recommended
Art in Reflective Practice: 16 weeks, Reflections of a trainee in Palliative Medicine
Author(s) of poster: Angela Nelmes
Clinical Psychologists in specialist palliative care: what do we actually do?
Author(s) of poster: Jenny Strachan, Anne Finucane, Juliet Spiller
Day Therapies: Promoting Health and Well-being in Palliative Care
2. Specific group sessions (health and well-being, life story work, creative, IT skills) held weekly in the Netley Day Centre in Inverness. These run weekly, approx 2 hours each. For these, patients opt in to a 12 week programme.
3. Outreach sessions which run fortnightly in Skye, Fort William and Thurso. These sessions run for 3 hours per session and their programme is similar to that of the health and well-being group. The sessions focus on a specific topic eg anxiety management. The staff facilitate discussion and promote peer support.
Poster Abstracts of the Month - August
The SPPC Annual Conference in 2013 featured 36 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on:
Understanding palliative and end of life care through community engagement
Up-skilling generalist nurses in palliative care
Using an outcome measure in specialist palliative care settings
The South Edinburgh Care Homes Project: A community nurse specialist led intervention to improve palliative care
Author(s): Finucane AM; Gardner H; Gibson H; McCutcheon H; McLoughlin P; Muir L; Murray SA; Oxenham D; Stevenson B (Marie Curie Hospice, Edinburgh; University of Edinburgh)
Background: Approximately 20% of people die in long term care settings. Hospices are well placed to support care homes to deliver palliative care to residents who would benefit.
Aim: To improve the delivery of palliative care to care home residents using a hospice-led model of care home support.
Approach used: Twenty-two South Edinburgh nursing care homes agreed to take part in the project. Care homes were divided into two geographically defined clusters. The intervention is currently being delivered to the first cluster. Key components of the intervention include: support from a dedicated Community Palliative Care CNS; two palliative care leads in each care home; palliative care training; palliative care review meetings with GPs, and implementation of the Supportive and Palliative Care Action Register.
Results: Baseline data relating to the deaths of 77 residents from eight care homes was collected. A high proportion died in the care home (92%); 83% had DNACPR documentation in place; 64% had some evidence of anticipatory care planning; and 55% had anticipatory medicines prescribed.
Conclusion: Despite a large proportion of residents dying in the care homes a significant proportion of deceased residents had no evidence of any anticipatory care planning. The intervention is will build on these results.
The Square Table Programme
Author(s): McGill M; McNamara K (Children's Hospice Association Scotland; Together for Short Lives)
This poster will describe the collaboration between two national organisations in the United Kingdom dedicated to children’s palliative care joining together to host three national conversations about children’s palliative care in Scotland.
Children’s Hospice Association Scotland (CHAS) is a national charity in Scotland and the sole provider of vital hospice services for children and young people with life-shortening conditions working at national, local and regional levels.
Together for Short Lives is the UK CPC organisation, working to help ensure that every child unlikely to reach adulthood, and their family have the best possible care and support whenever, and wherever they need it.
The Square Table programme offered a series of events which offered a structured environment in which the aspirations of children and young people with life limiting and life threatening conditions, together with the views and concerns of their parents and key carers were heard and understood in
common forum with key representatives from the entire children’s palliative care provider community.
Understanding palliative and end of life care through community engagement
Author(s): Connelly M; Hekerem D; Layden J; McLoughlin P; Sandeman K; Tyrell P (Argyll and Bute, Marie Curie Cancer Care)
Three Marie Curie service redesign programmes in Scotland (Argyll and Bute, Lanarkshire and Lothian) have been addressing the issue of health promoting palliative care and changing the culture around death, dying and bereavement.
This work has been led by extensive local community and stakeholder involvement to ensure that future initiatives and service design responds to the local needs and population. A series of stakeholder workshops were held in the
three areas and were attended by patient/carer representatives, voluntary, independent, health and social care. Participants were encouraged to brainstorm ideas and solutions to the question, ‘How would you improve the culture of death, dying and bereavement in your local area?’ A range of options were identified. This poster will describe the benefits of community engagement in health promoting palliative care, the common themes from across the three geographic areas and proposed work. It is anticipated that the engagement work will positively contribute to changing the culture towards death, dying and bereavement.
Up-skilling generalist nurses in palliative care
Author(s): Connolly J (NHS Ayrshire and Arran)
Aim: To up-skill 48 nurses’ knowledge and skills in palliative care who were working in the generalist areas within NHS Ayrshire & Arran over a 2 year period.
The programme was developed and implemented between the NHS, Ayrshire Hospice and the University of the West of Scotland (UWS) and funded by Macmillan Cancer Support. The purpose was to offer an opportunity to NHS nursing staff to complete a programme of academic and experiential learning in palliative care. The programme involved undertaking an academic distance
learning module with the University and a practice placement of 5 days with the different specialist palliative care teams. Time out to attend the scheduled placement and 6 study days was funded by Macmillan Cancer Support. A qualitative external evaluation was commissioned.
Results: Over 2 years, 39 nurses completed the programme. The impact of the academic and experiential learning was captured through semi structured interviews with the nurses, managers and key stakeholders. Ten key themes emerged.
Conclusion: The learning opportunity has been appreciated. Nurses feel more confident and are more aware of the other palliative care resources and services that are available to them and for patients in the wider community.
Using an outcome measure in specialist palliative care settings
Author(s): Cochrane E; Colville E; Doogan D; Ferguson M; Walker G (NHS Tayside - Specialist Palliative Care Services Dundee)
Patients were invited to participate in a 6-month pilot using the St Christopher’s Index of Patient Priorities (SKIPP) questionnaire within the Hospice, Day Care and Community Macmillan Nurse Team. Data was collected and analysed using the recognised and validated tool.
Results: Findings from this pilot would suggest that patients did benefit from input from all three teams and identified a positive shift for patients over a period of time. 121 completed questionnaires were analysed there was significant evidence to suggest a positive impact on patients’ quality of life, key symptoms and major concerns.
Discussion: It is recognised that obtaining valid and reliable measurement of the outcomes achieved by palliative care for patients is extremely challenging often because patients are too ill or because of fluctuating and changing needs. However the questionnaire takes account of response shift, a well known phenomenon in which a persons’ perception of subjective sensations can
change over time.
Conclusion: Having a tool such as SKIPP has been deemed a very useful way of evaluating the impact three areas within a Specialist Palliative Care Service have on a patients quality of life, key symptoms and major concerns. It is planned to repeat this exercise again for a 6 month period.
Poster Abstracts of the Month - July
The SPPC Annual Conference in 2013 featured 36 poster displays, sharing work and research underway across Scotland. Each month, this blog will focus on the content of a few of these posters. This month, we focus on:
Planning ahead for people with dementia
Author(s): Haining G; McKechnie L (Alzheimer Scotland; NHS Dumfries and Galloway; University of Edinburgh)
Forward planning has been internationally recognised as an effective approach to facilitating person-centred health and social care, but there is little evidence of this approach specifically designed for people with dementia. This innovative project provides an exciting opportunity to explore this emotive subject further and enable people with dementia to remain at the centre of decision making now and as they progress through their dementia journey.
The ‘planning ahead’ resources were designed to ensure that end of life issues were addressed in a timely fashion as part of the post diagnostic care provided for people with dementia.
Palliative care for people with dementia should commence at point of diagnosis.
An information booklet specifically designed for people with dementia addresses the many ‘what if’ questions regarding physical, psychological and social aspects of dementia. This helps people to make informed decisions about their future care. This allows people to make informed choices about their care and treatment as their illness progresses.
The ‘planning ahead’ booklet and documentation facilitates end of life care planning as part of post diagnosis support.
Should a person who is near to death never be enrolled as a subject in clinical research? A critical appraisal of the literature on this key question
Author(s): Mullin J (Cicely Saunders Institute; NHS Lothian)
Introduction: The consequence of not researching is a poor evidence base. However, some argue that persons near to death should never be enrolled into research projects, as they are vulnerable.
Aims: To pick apart the ethical maze surrounding research at the end of life:
- How can we justify research on anyone?
- Are persons approaching the end-of-life are truly vulnerable?
- What are the main ethical challenges to research at the end of life?
Method:
- Review of the published English-language literature
- Analysis with respect to: the biomedical framework of ethical and philosophical theory eg conflict between deontology and utilitarianism
Conclusions: We have a moral imperative to:
1. Both protect and empower vulnerable groups, ensuring that they also have access to the fruits of research (Justice)
2. Improve the evidence base for palliative care thus:
a) Avoiding administration of inappropriate, useless or harmful treatments and preventing
informal ‘n=1 trials’ without consent (non-maleficence)
b) Finding treatments which do work (beneficence)
3. Respect that some patients wish to take part in research, even if it is not of direct benefit to
them (autonomy)
4. Provide the utmost dignity and the highest levels of care for individuals (deontology) and our
population as a whole (utilitarianism)
Staff perceptions of Do Not Attempt Cardiopulmonary Resuscitation discussions in a palliative care setting - a qualitative study
Author(s): Finucane A; Low C; Mason B; Spiller J (Marie Curie Hospice Edinburgh; University of Edinburgh)
Background: Do not attempt cardiopulmonary resuscitation (DNACPR) decisions are made to prevent the distress caused by performing inappropriate CPR attempts. Clinical staff in specialist palliative care settings are often the people who discuss DNACPR with patients. Little is known about how staff experience and feel about these discussions; the factors that help and hinder
discussion of DNACPR; and how these discussions are best managed.
Method: Semi-structured interviews were conducted with 11 clinicians at Marie Curie Hospice Edinburgh working in inpatient and community settings. Interviews were digitally recorded, transcribed, and a thematic analysis was undertaken.
Findings: Most clinicians experience anxiety in advance of discussing DNACPR with patients, particularly when the discussion is not patient-initiated. Factors facilitating discussions include: patient characteristics (openness to discussion; acceptance of illness); clear trigger point (e.g. discharge from inpatient unit); and the clinician’s belief in the benefit of the discussion to the patient. Hindering factors include the clinician’s fear of causing patient distress; uncertainty
regarding whether CPR would be successful; and working in an environment where responsibility for the discussion does not lie with a specific staff member.
Conclusion: Acknowledging the challenging nature of DNACPR discussions and sharing experiences on what works well is warranted. A set of recommendations on how best to approach and manage DNACPR discussions will be outlined.
The 100% Project
Author(s): Neely R (Children's Hospice Association Scotland)
There is anecdotal evidence that families who have a child with a life-limiting condition experience isolation and stress because people avoid engaging with them about issues around death, dying and bereavement. Scotland has a number of organisations who are now focussing on how to encourage a societal shift in attitudes. As a children’s palliative care organisation, there is a
responsibility to families for CHAS to contribute to this work.
The 100% Project is a community engagement project which aims to start conversations about death, dying and bereavement in a life-affirming way. The poster highlights some of these activities to date.
Palliative Care Resources for Community Pharmacists
Macmillan Cancer Support and NHS Education Scotland have developed a National Palliative Care Resources folder aiming to enhance the provision of palliative care and share good practice with community pharmacy colleagues across Scotland.
The new resource is based on a local folder developed during the pilot phase of the Macmillan Pharmacy Service, designed to meet the needs expressed by community pharmacists from across NHS Greater Glasgow & Clyde.
The resource pack can be accessed here: link.
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