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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 

Professionals training in palliative medicine are regularly exposed to situations, emotions and concepts that are difficult to express in writing in reflective practice. There has been a move towards alternative methods for reflection that allow these less tangible aspects to be expressed. '16 weeks: Reflections of a trainee in palliative medicine' is a project that explored the use of art, specifically textile art, in the reflective practice of a Core Medical Trainee in a 16-week placement in a hospice. Each week one aspect of the work that struck the trainee was imagined in a piece of textile art, and the resulting pieces were formed into a patchwork quilt. The resulting artwork is explained in a series of notes for those viewing the quilt. In this poster the trainee gives a short description of how useful they have found the project as a form for reflection.

 

Clinical Psychologists in specialist palliative care: what do we actually do?

Author(s) of poster: Jenny Strachan, Anne Finucane, Juliet Spiller

Promoting mental and emotional wellbeing is at the heart of the palliative care ethos. It is widely acknowledged that psychological distress contributes to the difficulty of managing physical symptoms such as pain, breathlessness, nausea etc and yet dealing with significant psychological distress is an area of practice that many specialist palliative care clinicians feel ill-equipped to address adequately. There is increasing recognition in policy and in professional organisations that clinical psychologists - whose training emphasises individual formulation of difficulties drawing on a range of theoretical models, and adapting evidence-based interventions to meet specific patients’ needs – have much to contribute in this setting. There is also an increasing research evidence base for psychological interventions. However, surveys of psychologists working in related areas suggest that a lack of clarity about the role and activities of clinical psychologists may present a barrier to optimum working relationships and to patient referrals. Despite this, little has been published describing the actual work of clinical psychologists in specialist palliative care in concrete and accessible terms. This poster attempts to address this gap by presenting a selection of case examples illustrating the diversity of patient difficulties encountered by a clinical psychologist working in and Edinburgh hospice, and describing the interventions in response.

 

Day Therapies: Promoting Health and Well-being in Palliative Care

Author(s) of poster: Jon Jordan, Eilidh Maitland 
1. Day Therapy - Patients attend once a week for a 6 hour day. The programme includes gentle exercises, discussion groups, creative activities, and the opportunity to have 1:1 input from OT's, Physio, Complementary Therapists, Chaplain and Nurse. By running this as a group session people are also benefitting from social interaction and peer support.

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 - 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.

Poster Abstracts of the Month - June

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:

Let’s get it right time first time ……..
Discharge Pathway for patients who are in the last days of life

Author(s): Mackay C; Wright J; Wylie F (NHS Greater Glasgow and Clyde)

Research has shown that the majority of individuals wish to die in their own home (Ryder, 2013), however within NHS Greater Glasgow and Clyde 52% of deaths are within the acute care setting (ISD, 2011). Despite discharging many patients home to die there are still patients that do not die in their preferred place of care. Anecdotal evidence suggests this may be due to deficits in knowledge, confidence and facilitation skills in staff coordinating the discharge.

To address this NHS Greater Glasgow and Clyde set up a multi-disciplinary short life working group whose aim was to develop a pathway that would form the basis of teaching for selected pilot areas.

The aim of the pilot was to promote:

• seamless discharge from hospital to home within normal working hours

• prevent re-admission where possible

• facilitate a peaceful death in the patients preferred place of care

The group also developed questionnaire's to enable feedback on the discharge from hospital, community and carers. Twelve pilot areas have been identified and have received teaching on the components of the pathway. Feedback has highlighted areas of good practice as well as areas for improvement specifically around DNACPR, medications and significant conversations.

Further feedback is essential to influence the information included in the pathway and to promote patient centred care.

Life story work within a hospice

Author(s): Jackson S; Murdoch I (ACCORD Hospice, Paisley)

Life story work, in a variety of health and social care settings has been used successfully as an intervention for people living with illness and disability and is invaluable in the pursuit of person centred care (DoH 2009). Life story work has become an emerging area of psychosocial intervention within Accord Hospice focussing on life story groups, individual life stories and community visits. Life story groups within the Day Therapy Unit consist of weekly discussions on the stories that make up the lives people have lived within the rich local heritage of family, industry,

community and culture. Reminiscence, sharing, creating stories, and uncovering skills and talents help patients and families face their present journey through illness.

Individual work consists of gathering patient’s stories within the day or bedded unit as a positive process for the person and a legacy for family when they die. The therapeutic acts of listening, remembering and recounting helps to affirm positive aspects of individual lives, no matter how ordinary the person perceives

them to be. Reflecting on a life lived can help in the process of both living and dying.

To date collections of stories from some of the group and individual work at Accord has been gathered into a booklet called ‘According to us’.

Loss, Grief and Bereavement ‘Toolkit’

Author(s): Lindsay J; Miller J; Kelly J; Guthrie M; Doyle J (St Margaret of Scotland Hospice,Clydebank)

Whole School Approach 'Toolkit’

Many children and young people will experience grief throughout their lifetime. These experiences will relate to the loss of a parent, sibling, family member or pet. Children will also experience grief when parents separate or are imprisoned, friendships are disrupted or when the nurturing process is interrupted. Grief is synonymous with life. ‘Grief’ is an emotional reaction to loss and when loss is specific to death, the reaction will be representative of the significance of the loss experienced,

and whilst it’s a natural process the effects can be overwhelming.

During bereavement, children and young people may experience a number of emotions, including 12 Poster and display list 2013 sadness, anger, anxiety, guilt, fear, denial, disbelief and confusion. With the right guidance and support, most children and young people will not require professional help and will become resilient individuals. According to the Child Bereavement Charity, what’s needed is continuity, honest answers to difficult questions and the familiarity of trusted adults. Schools are well placed to provide such support.

A working group has been established with representation from GCC Education Services, Educational Psychology, NHS GG&C Health Improvement Seniors – Schools Based, Education and Psychosocial staff from St Margaret of Scotland Hospice Clydebank, Marie Curie Hospice Glasgow and the Prince and Princess of Wales Hospice.

The purpose of the group is to:

• promote a planned, responsive and progressive approach to classroom teachers across Glasgow

• provide evidence based training specific to supporting children and young people as underpinned by GIRFEC (Getting It Right for Every Child), Curriculum for Excellence and Good Life Good Death Good Grief

• develop an online resource to be reviewed and updated as evidence base changes or new information becomes available.

Three study events have been facilitated with 30 delegates from a range of early years, primary, secondary and special needs schools. The events have achieved excellent evaluation. The on-line resource is complete and launch dates are planned from October 2013.

Macmillan Cancer Support at Argyll and Bute Libraries

Author(s): Daniel P; McCann P; Millar K; Tyrell P (NHS Highland)

Feedback from scoping studies on the information and support services of people affected by cancer was the recognition of the need to improve access to information and support especially to more rural communities (2008, 2007).

This service development represents a partnership approach between Macmillan Cancer Support, NHS Highland (Argyll and Bute CHP) and Argyll and Bute Council.

The Macmillan Cancer Support at Argyll and Bute libraries aims to improve the quality of life of individuals affected by cancer, by developing a collaborative approach to establish library based cancer information services within Argyll and Bute via a drop in facility in the libraries. Individuals, carers and families regardless of where they are on their cancer journey will have access to person specific information, practical, emotional and financial support. The service will build on and augment existing services. Through assessment of need individuals are signposted to all other services available, using a systematic and patient centred approach. The service will enable and empower individuals to make informed decisions about their care and treatment and will also promote self management.

The service will be staffed by a service manager and volunteer coordinator who will train volunteers and the librarians to ensure the sustainability of the service.

North Glasgow palliative care fast-track discharge service

Authors: Bunch H; Hekerem D; Layden J; McGlynn G (Marie Curie Cancer Care)

The fast-track discharge project is an innovative model of care for palliative and end of life care patients. A partnership between NHS Greater Glasgow and Clyde and Marie Curie, with the assistance of others, the service supports hospital and hospice discharge for people over 65 years, to receive care, and ultimately die, within the home environment, where this is their choice. The service is managed by two senior nurses and a team of senior health & social care assistants to deliver a coordinated care package that meets the needs of the individual patient. In the most recent financial year (2012-13) 121 patients were supported to die at home and almost 1000 hours of care were provided by the health care assistants.

The service has further contributed by preventing the unnecessary admission to hospital or hospice of 29 patients. This successful project is now being expanded to cover both NE and NW Glasgow.

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