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Guidance for bereavement needs assessment in palliative care By Marilyn Relf, Linda Machin and Nikki Archer

February 2008

About Help the Hospices Help the Hospices supports local hospices across the UK. This support is provided through a wide range of services all aimed at helping hospices provide the very best care for patients and their families. These include training and grants for hospice staff and volunteers, national programmes of advice, information and support, special award programmes to fund new services and the coordination of national fundraising initiatives. We are also involved in supporting services around the world, especially in developing countries. In all that we do, we aim to make a real difference to the care given to patients and their loved ones. Website: www.helpthehospices.org.uk

Acknowledgements Help the Hospices would like to thank the HBOS Foundation for its generous support of a number of bereavement-related projects, including this publication, which was made possible by the funding from the HBOS Foundation Million Pound Challenge.

While great care has been taken to ensure the accuracy of information contained in this publication, it is necessarily of a general nature and Help the Hospices cannot accept any legal responsibility for any errors or omissions that may occur. The publishers and authors make no representation, express or implied, with regard to the accuracy of the information contained in this publication. The views expressed in this publication may not necessarily be those of Help the Hospices. Specific advice should be sought from professional advisers for specific situations. No part of this publication may be reproduced, stored in a retrieval system or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise without the prior permission of Help the Hospices. The right of Marilyn Relf, Linda Machin and Nikki Archer to be identified as authors of this work has been asserted by them in accordance with the Copyright, Designs and Patents Act 1988.

© 2008 Help the Hospices ISBN: 978–1–871978–72–8 Published 2008 by Help the Hospices. Registered Charity in England and Wales, Help the Hospices No. 1014851. Company Limited by Guarantee registered in England No. 2751549. Registered office: Hospice House, 34–44 Britannia Street, London, WC1X 9JG, UK.

About the authors Dr Marilyn Relf, PhD, has worked in palliative care for over 25 years, setting up one of the first hospice bereavement services at Sir Michael Sobell House, Oxford and gaining her PhD for a multi-method evaluation of the effectiveness of bereavement support workers. She is a founder of the UK Bereavement Research Forum, is an editor of the journal Bereavement Care and is a member of the International Working Group on Death, Dying and Bereavement. She is Director of Studies of a new postgraduate certificate: Working with Bereaved Adults (a collaboration between Help the Hospices, St Christopher’s Hospice, Sobell House and the University of Middlesex).

Dr Linda Machin, PhD, trained as a medical social worker and went on to conduct pioneering bereavement work for the Anglican Diocese of Lichfield. She published training material for people working with the bereaved and established a bereavement counselling agency in North Staffordshire before taking up an academic post at Keele University. She devised the ‘Range of Responses to Loss’ model and the ‘Adult Attitude to Grief’ scale and continues to research the practice application of these approaches to working with grief. Linda is a Visiting Research Fellow of Keele University and also works as a freelance trainer and hospice bereavement counsellor.

Nikki Archer has been the Family Support and Bereavement Service’s Manager at St Giles Hospice, Lichfield for the past nine years. During this time she has been instrumental in setting up the Association of Bereavement Service Coordinators in Palliative Care (ABSCo). Nikki has a background in nursing, having previously worked within the HIV field and has undertaken research into the needs of carers.

Contents Page

Foreword

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Introduction

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Risk assessment – the story so far

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Moving forward – from risk factors to coping styles

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Recognising responses to loss

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Assessing need using the ‘Responses to Loss’ approach

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Organisational issues in implementing assessment

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Summary

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References

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Appendices

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Foreword Everyone will be bereaved; the emotions and experiences associated with bereavement will leave some feeling overwhelmed and insecure. This is especially, but not inevitably, true of those with pre-existing social and psychological vulnerabilities. It is also true that most people cope with the hurt and dislocation that bereavement brings with the aid of their own internal resources and the support of family, friends and community networks. Health and social care budgets are inevitably limited and likely to become more so with an ageing population. Appropriate bereavement support comes in many forms, but economic and human resources for bereavement services have always been in particularly short supply. Well-informed decision making is vital if we are to allocate such resources effectively. Considerable anxiety has been expressed in the field about the reliability of both checklists and informal assessments in measuring accumulated risk factors. These anxieties have become more insistent since patients now spend briefer periods in specialist end of life care settings and staff have less time to get to know family and friends and often less training in areas of psychosocial care. In a time-pressured service environment, risk assessment can rapidly be reduced to an inaccurate series of tick boxes.

practical. Written with an eye on reality by experienced practitioners, teachers and academics, it covers limitations in current assessment methodologies, organisational issues from ethics and access to how to create an assessment form, and emphasises the importance of relationships and conversations as assessment tools, in addition to observation. It gets close to the real texture of individuals and their lives and relationships, and seeks to acknowledge strengths as well as to delineate problems. This publication is underpinned by the belief that people can grow and develop through adversity, whilst seeking to identify those in particular need of support if they are to do so. The authors recognise that they have not created a definitive guide to assessment, and acknowledge the need for research. However, they have outlined a clear decision-making pathway and made a significant contribution to ongoing work to improve practice. I commend this publication to everyone involved in the endeavour to deliver quality end of life care. Barbara Monroe, Chief Executive, St Christopher’s Hospice

This publication adapts Machin’s ‘Range of Responses to Loss’ model, validated in a study of bereaved people, to consider the strategies people are using to manage the strain of impending bereavement. It seeks to understand the adequacy of individuals’ coping responses to the demands of the situations they are facing and to use this understanding to assess both vulnerability and resilience. The renewed interest in end of life care at every level in government and healthcare planning makes the guidance particularly timely. It is designed to be Bereavement needs assessment

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Introduction This publication provides guidance to support the assessment of need for bereavement care. The purpose of assessment is to inform decision making so that we can make the best use of our bereavement services and offer the right help to the right people1,2,3. This publication outlines the rationale for assessment, describes current methods and discusses their limitations. It concludes that a new approach is needed that focuses on individual coping so that we can recognise both resilience and vulnerability in the face of ‘risk’. It suggests a way forward and provides a decision-making pathway.

This publication is not a definitive guide to assessment but presents ongoing work to improve practice. Help the Hospices and the authors welcome comments and feedback and recognise the need for further research.

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Risk assessment – the story so far

Why assess need? While the death of those we love and with whom our lives are entwined is often associated with a period of suffering, each loss is unique and the need for support varies. Many people find that their inner resources, combined with the support available from family and close friends, is sufficient to help them manage their distress and all the life changes triggered by their loss. When they seek help it is usually to check that their reactions are ‘normal’ rather than to seek counselling, and they are unlikely to need professional help. However, some people are more vulnerable, and a substantial minority of bereaved people find it more difficult to adjust to life without the person who has died and are at increased risk of experiencing persisting physical and mental health problems4. The intensity of their grief may continue unabated, they may have disturbing memories of the events leading up to the death, they may blame others for the death or feel guilt or shame at their own behaviour5. Reviews of the factors that influence grief6,7,8 conclude that these differences in health outcome are influenced by the: „ Events and circumstances leading up to the death „ Meaning of the relationship with the deceased „ Personal vulnerability of the bereaved person „ Availability of social support and economic resources.

measurable difference to those with ‘high’ levels of vulnerability or ‘risk’10. While ‘bereavement counselling’ is often used indiscriminately to mean a range of interventions from befriending through to therapy, there is now general agreement that offering therapy to those who are resilient is not helpful and may be harmful11. Rationale for assessing need: „ Palliative care encompasses the needs of the family – used broadly to include those who have strong emotional and social bonds with the patient – and seeks their active involvement in decision making. It is well placed to assess need and provide continuity of care to family members after bereavement. „ There is a duty of care to minimise the risks to health associated with bereavement by offering support proactively. „ There is no evidence that all bereaved people will need help, and support should be channelled toward those who are more vulnerable. „ Services need to make the best use of limited resources. „ Assessment can clarify concerns and in itself be helpful. „ Assessment facilitates objective decision making about the type and level of bereavement service that may be needed.

‘Risk factors’, therefore, are the characteristics of bereaved people and the features of their situation that may increase the probability of vulnerability9. These factors have been used to inform decision making about who may benefit from bereavement services. Early studies of ‘bereavement counselling’ indicated that it only makes a Bereavement needs assessment

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Palliative care bereavement services

Problems with current methods of assessment

Although the rationale for developing palliative care bereavement services was to prevent the health problems associated with bereavement1, in reality many services were set up in reaction to an unanticipated demand for help. This has resulted in diversity in the provision of bereavement care12. Support strategies include memorial services, social groups, therapeutic groups and drop-in events. The most common element is one-to one help described as ‘support’, ‘befriending’ or ‘counselling’ and is often provided by volunteers. Many services have adopted a universalistic approach and offer the full range of support available to everyone. However, in addition, one-to-one support is usually offered more proactively to those whom the staff consider to be more vulnerable.

There are problems with both formal and informal methods8. Informal methods, relying on individual assessment and word-of-mouth, are associated with an inconsistent approach to assessment and offers of support may be ad hoc. While formal methods aim to be more objective, studies of the BRI have found that it has limited reliability as a tool to predict bereavement outcome14,15. This is not surprising as its reliability depends on nurses having the time, skills and knowledge to make assessments.

How is need currently assessed? Assessment in relation to bereavement support is widely undertaken in palliative care, usually by nurses12. Both formal and informal methods are used. In just over half of UK services assessment is informal with nurses using their clinical judgement to decide who may need support after bereavement. In about 40% of UK services there is a more structured approach utilising checklists based on established risk factors12. These checklists ‘measure’ accumulated vulnerability and may be unscored or have numerical weightings and are largely derived from Parkes’ Bereavement Risk Index (BRI)13. Usually such checklists are not used alone but in combination with formal and informal discussions about the needs of bereaved people. They are a core part of a decision making process, with bereavement service coordinators deciding the type and level of support to be offered.

The length of time spent as a hospice inpatient has decreased markedly since the 1970s when the BRI was introduced and time to get to know the family may be limited. Family members often focus their energy on the patient and may not be willing to explore their own needs, and nurses may find it intrusive to ask specific questions in relation to bereavement risk13. In practice the degree to which palliative care is family focused rather than patient focused varies and family members may be unaware that their needs are being taken into consideration. Education to support assessment may not be given high priority16 and the meaning of some typical questions on assessment forms is open to interpretation (such as whether ‘unusual’ levels of guilt or anger have been observed). Consequently, in practice ‘objective’ assessments may be difficult to make or based on assumptions rather than explicit information. It is not surprising that there is discontent with current assessment practice16. There is both a need to provide training to support assessment and to find more reliable methods. The process described in this publication moves some way towards addressing the latter.

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Moving forward – from risk factors to coping styles

Stroebe et al17 argue that the extent to which individual coping resources are adequate to meet the demands of the situation determines whether people will be more resilient or more vulnerable. Ways of coping influence individual health outcomes rather than the presence of risk factors alone. An integrative approach to assessment is needed, therefore, that examines coping as well as risk factors. As adults have preferred ways of coping with life events, one way to improve assessment is to examine how people are responding to the demands of their situation. How are they coping with caring for a terminally ill family member and their impending bereavement? In this publication Machin’s ‘Range of Responses to Loss’ model – which was validated in a study of bereaved people18 – has been adapted to provide a framework for understanding coping in those facing death and bereavement. Machin18 proposes that responses to loss fall into three broad groups: „ Overwhelmed – where feelings of distress are the dominant response „ Controlled – where maintaining emotional control, managing problems and dealing with the demands of everyday life is the dominant response „ Resilient – where there is the ability to manage the emotional, social and practical aspects of the situation with a sense of equilibrium. The notions contained within Machin’s18 model are consistent with other popular theoretical frameworks used by those working with dying and bereaved people (Table 1 – see page 7). All of these frameworks suggest that resilience reflects the ability to move or oscillate19 between experiencing grief and controlling emotions in order to manage everyday life. Machin18 used the ‘Responses to Loss’ model

to create a self-assessment tool – the ‘Adult Attitude to Grief’ (AAG) – validated in the context of bereavement care20,21. The AAG helps people to describe how they are experiencing the different elements of grief in a self-report questionnaire. It has not yet been adapted for use pre-bereavement as there are challenges to overcome in the routine use of a self-assessment tool at times of crisis. This publication, therefore, has adapted the concepts to enable staff to understand coping responses and assess vulnerability. Machin argues that two elements lie at the heart of a grief reaction (the term ‘grief’ is used here to describe reactions to loss both before and after bereavement). These elements are the overwhelming distress generated by the loss and the desire to retain a degree of control in order to manage the situation. In the overwhelmed response feelings dominate – sadness, anger, guilt, helplessness, etc. In the controlled response a more cognitive reaction dominates characterised by diversion from feelings, attention to thinking, taking action and focusing on the practical elements of caring (Figure 1 – see page 8). At times of crisis in the illness trajectory (such as diagnosis, recurrence, cessation of active treatment and bereavement) family members may be more likely to feel overwhelmed, but some will seek to maintain strong control even at these times. Many people will feel more comfortable in one mode of response but most will use both ways of coping when faced with the terminal illness of a family member. The management (or not) of the competing forces of (overwhelming) feelings and the need for action (control) are shaped by personal resources and circumstantial factors, and these determine the degree of vulnerability. Greater resilience is indicated when there is a capacity to embrace both elements of grief18,22. Individuals can both accept their

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emotional reactions and continue to take decisions and act. The distress, tension, contradictions and uncertainties of grief are mediated by an awareness of personal resourcefulness, a capacity to access and use social support and an evolving sense of meaning. Following Stroebe and Schut19, there is a relatively comfortable oscillation between emotion and control (Figure 2 – see page 8). In contrast, vulnerability is associated with especially powerful and persistently overwhelming feelings and thoughts. Vulnerability is also indicated when an individual, who usually functions best through emotional control, finds it impossible to subdue distressing emotions. Such individuals experience great tension as they struggle to maintain control while holding powerful emotions at bay. This leads to strong and distressing feelings of powerlessness and a very uncomfortable oscillation between emotion and control (Figure 3 – see page 8). Resilience and vulnerability are shaped by personal resourcefulness and circumstantial factors that exist at the time of the loss. Table 2 (see page 9) provides a matrix showing the interconnection between the core dimensions of grief (overwhelmed and controlled responses) and the spectrum of factors contributing to vulnerability or resilience. The ‘compass’ shows how both overwhelmed and controlling responses are not of themselves indicators of risk. Whether a person is more vulnerable or more resilient reflects how these are linked to personal and circumstantial factors.

be less persistent among people who are selfconfident and optimistic, have available support that they feel able to call upon and who are dealing with other life demands that do not exceed their capability. In the same way, the controlling reaction to loss will manifest in different ways depending upon personal and circumstantial factors. Where personal capacity is limited and circumstantial demands are high, the normal strategies for remaining in control may be defeated and the anxiety of powerlessness will be very dominant. Conversely, where the aspiration for control is not undermined but is reinforced by adequate personal resources and manageable circumstantial factors, control may be seen as a positive and helpful response to loss. The matrix (Table 2) can be used in the assessment of vulnerability; multiple agreement with factors in the top half of the matrix will indicate the potential need for bereavement support, while evidence of a bias towards responses in the bottom half of the matrix indicates that formal bereavement support is unlikely to be needed. In Appendix 1 (see page 19) we see an example of an assessment form using this approach and Appendices 2 and 3 (see pages 20 and 21) provide a case study to illustrate how the matrix can be used as part of the process of assessment.

The manifestation of overwhelmed feelings is likely to be greater and more persistent if the person is dealing with other stressful life demands such as relationship difficulties, unemployment, etc, or lacks personal resourcefulness. This may reflect factors such as current or past mental health problems. Feeling overwhelmed by emotion is likely to Bereavement needs assessment

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Social and cultural context The cultural and community context in which people grieve also shapes responses to loss23. For example, in the UK emotional control is given greater value than expressing feelings, particularly among men24. It is important, therefore, to be aware of the degree to which there is social reinforcement of individual attitudes – through shared societal and family attitudes, beliefs and rituals25. A significant factor in resilience is social integration and support26, and alongside the observation of individual grief responses, it is important to consider the social context and the family style of coping27. Families and friendship groups may provide comfort and support or be a source of tension. Individual core beliefs, attitudes and styles of response to loss may be compatible or in conflict with the wider social group. The family as a unit may be facing a number of concurrent

stressors, have considerable resources to draw on or be depleted with few resources. These issues are likely to be determined by cultural factors and the degree to which individuals are integrated within their own family and wider social networks. Intergenerational conflict and cross-cultural differences may cause some people to feel very isolated. It is important to recognise that social deprivation, poor housing and limited financial resources are likely to increase vulnerability. Struggling to manage day to day living will undermine the emotional, practical and social resources needed to sustain the care of a sick relative and retain a sense of personal, and family, resourcefulness.

Table 1 – Parallels between ‘Responses to Loss’ and key models of grief ‘Responses to Loss’18

Overwhelmed

Resilient

Controlled

Attachment theory28

Anxious/ambivalent

Secure

Avoidant

Stress theory29

Intrusion

Dual process model19

Loss orientation

Oscillation

related30

Intuitive grief – emotional coping

Blended grief – emotional and cogntive coping

Personality

Avoidance

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Restoration orientation Instrumental grief – cognitive coping

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Figure 1 – Core dimensions of grief

Overwhelmed Focus on feelings

Controlled Focus on thinking and action

Figure 2 – Resilience

Overwhelmed Focus on feelings

Controlled Focus on thinking and action

A comfortable capacity to oscillate between overwhelmed and controlled responses

Figure 3 – Vulnerability

Overwhelmed Focus on feelings

Controlled Focus on thinking and action

Uncomfortable tension between the feelings of overwhelming distress and the desire for control Bereavement needs assessment

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Table 2 – Matrix of ‘Range of Responses to Loss’ Overwhelmed + Vulnerable Feelings: Continual and/or high levels of distress. Thoughts: Preoccupied with the loss. Views self as a victim of circumstances. Behaviours: Confused, unpredictable. Life perspective: Generally negative outlook. Social support: Perceives support as lacking or makes poor use of it.

Overwhelmed

Vulnerability Personal capacity reduced, eg by physical or psychological problems, difficulty in dealing with past stresses.

Controlled + Vulnerable Feelings: High anxiety about losing control or expressing strong feelings. Thoughts: Has difficulty in accepting reality. Cognitive defences may not effectively Circumstantial risk heightened control emotions. by concurrent factors, eg difficult Behaviours: Finds it hard to cry. death, caring for children, elderly Temper or irritation under parents, relationship/ pressure. Life perspective: Believes in financial/housing problems. being strong but struggles to maintain this. Social support: Reluctant to make use of support or disclose personal needs. O/V

Vulnerability

Controlled

C/V

The desire to (re)establish control is central.

Powerful emotions are central. C

O

Core dimensions of grief

O/R

Overwhelmed + Resilient Feelings: Experiences feelings but not continually dominant. Thoughts: Able to understand and acknowledge impact of loss. Behaviours: Generally functions well. Life perspective: Has hope for the future even when currently distressed. Social support: Uses available support well.

Resilience

C/R

Resilience Personal capacity – Inner resources are adequate to meet the demands of the loss, eg positive past experience, confidence, hopeful outlook. Circumstantial factors are positive, eg events surrounding death, support available, additional demands manageable.

Controlled + Resilient Feelings: Not visible Thoughts: Thinks clearly re strategies to manage loss. Behaviours: Functions practically and effectively. Life perspective: Believes in importance of being strong. Social support: Makes few demands on social support.

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Recognising responses to loss This section describes specific and general indicators for the core responses to loss (overwhelmed or controlled). In addition it describes indicators for resilience and its opposite, vulnerability, ie persistently overwhelmed or struggling to control strong emotions. Some individuals may demonstrate a way of coping that is naturally inclined to either a continually overwhelmed response or to a controlled response. In this section the authors have focussed on individuals as, in their experience, there are usually more opportunities for one-to-one conversations and assessment.

1. Overwhelmed response

2. Controlled response

Specific indicators:

Specific indicators:

„ Demonstrates a frequent intrusion of thoughts and feelings about the patient, the illness, the outcome, etc. „ Conveys a sense that current distress will persist. „ Conveys a sense that everything is changed (for the worse), good things will not be recovered and life has lost its meaning.

„ Values courage and fortitude in their response to the patient’s illness and its outcome. „ Believes that feelings should be controlled as a demonstration of strength. „ Believes that they should avoid burdening other people with their feelings. „ Believes that managing a loss is best undertaken by getting on with life and diverting from things that cannot be changed.

General indicators: „ Tearful.

„ Anxious and agitated.

„ Fearful.

„ Depleted resources.

„ Lack of trust in themselves.

„ Pessimistic.

„ Frequently seeking reassurance.

„ Demanding of staff attention.

„ Unable to process information.

„ Critical of patient’s treatment.

General indicators: „ Little or no emotional response to the situation. „ Matter of fact in discussions about the illness and its outcome. „ Difficulty in responding to other people’s emotions. „ Lacks trust in other people. „ Does not seek support for themselves. „ Major focus on practical concerns. „ Able to manage other life demands. „ Self-reliant.

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3. Resilient response

4. Vulnerable response

Specific indicators:

Specific indicators:

„ Can face the issues of impending loss resulting from the illness. „ Demonstrates coping strategies that make use of inner resources and external sources of support. „ While acknowledging the current emotional and social impact of the illness, there is hope that strength and meaning may come from the experience.

„ Avoids facing the issues of impending loss resulting from the illness. „ Does not demonstrate coping strategies that make use of inner resources and external sources of support. „ Cannot acknowledge the current emotional and social impact of the illness. Does not feel hopeful that strength or meaning may come from the experience.

General indicators:

General indicators:

„ Ability to describe situations coherently. „ Ability to engage in discussions about the illness and its outcome. „ Can show emotion but distress is not persistent. „ Ability to be open to the changing needs and emotions of the patient. „ Accepting of offers of help and support. „ Can take ‘time out’ and attend to own needs.

„ Unpredictable responses to discussions about the illness and its outcome, eg sometimes emotional and at others matter of fact. „ Angry and frustrated. „ Depressed. „ Difficulty in relating to staff. „ Ambivalent about accepting support.

These indicators can be considered alongside traditional risk factors (identified earlier) to help us to understand individual differences in coping.

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Assessing need using the ‘Responses to Loss’ approach

In order to assess need using the ‘Responses to Loss’ approach it is necessary not only to observe family reactions but to engage individuals in conversations about how they are dealing with their situation. It should be noted that there are challenges and limitations associated with reliance upon observation alone. In Table 3 (see page 13) we see examples of typical statements for each type of response to loss. In addition to statements, like the examples found in Table 3, the way that people tell their ‘story’ about how they are experiencing the illness and treatment of their relative or friend will help to identify their coping style and their vulnerability to loss. Angus et al31describes ‘narrative’ as having three elements:

Sensitive questions to open up these areas for discussion are unlikely to be intrusive and are usually seen as helpful: „ Tell me about... (external narrative). „ How are you reacting to... (internal narrative)? „ How are you managing to deal with... (reflexive narrative)? Appendix 2 (see page 20) provides a short case study which considers both traditional risk factors and coping responses to illustrate how understanding responses to loss can enhance the assessment process.

1 What happened and when (the ‘external narrative’) 2 The impact of events on the person (the ‘internal narrative’) 3 How they are making sense (or not) of their experience (the ‘reflexive narrative’). It is important to create opportunities to ask questions that will help to identify coping styles and vulnerability to loss. Family members often report that it is helpful to know that the staff are interested in how they are managing. Such conversations should start from the first point of contact, as understanding coping will enhance prebereavement family support. In Table 4 (see page 13) we see examples of narratives indicating coping responses to loss. The key areas to explore are: „ What is this person coping with? „ What resources do they have? „ How are they coping?

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Table 3 – Typical statements indicating type of response to loss (based on Machin’s Adult Attitude to Grief Scale) Response Overwhelmed

Type of statement I can’t stop thinking about X and all that is happening to him and us I’ll never get over this awful experience Life will seem pointless when X dies

Resilient

It’s only natural to feel sad in this situation It’s hard but I can cope with the situation It’s bad at the moment but I think things will get better

Controlled

I think you just have to be brave I can’t let other people see how sad I am I think you just have to get on with life

Table 4 – Examples of narrative indicators of responses to loss Narrative process

Range of responses to loss Overwhelmed

Resilient Story of illness and Story of the illness treatment has and treatment is told coherence. Attention in detail. Emphasis on given to positive and External narrative the awfulness of the negative aspects of experience. experience. The engulfing nature The pain of impending of sadness and anger loss is countered by a about the illness is positive sense of Internal narrative described. The personal speaker may assume resourcefulness. the role of victim. There is a lack of Sense of optimism in hopefulness about the spite of the sadness situation and difficulty and a capacity to find in finding a sense of meaning. Awareness Reflexive narrative meaning within it. of the strength that Personal identity may might come from be defined in terms of experiencing loss. the role as carer. Bereavement needs assessment

Controlled Story of the illness and treatment told with minimal detail. Emphasis on fact. Strong desire to have control. ‘Bravery’ dominates. Accounts of painful emotions minimised. Desire to divert from the painful elements of the illness and treatment and a need to demonstrate strength and stoicism in meeting adversity.

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Organisational issues in implementing assessment

This section addresses the organisational issues involved in assessment. Given the diverse nature of bereavement services within palliative care12, this publication cannot give definitive guidance. Instead this section describes the issues that need to be considered.

use of bereavement services. Good local knowledge is also important to facilitate access to appropriate help such as specialist mental health services and welfare rights and benefits.

The quality of bereavement assessment will reflect organisational commitment to family care before and after bereavement and the resources available to facilitate practice (Table 5).

Although the National Institute for Clinical Excellence3 states that all family members should be assessed in relation to bereavement care, in practice this is rarely possible. Palliative care staff usually have more contact with those in a close relationship with the patient, particularly those providing day to day care. The authors of this publication recommend that a realistic protocol for assessment should be created (see Appendix 4 on page 22).

Table 5 – Organisational components of assessment „ Education and training to develop knowledge and assessment skills „ Managerial commitment to ensure that assessment is part of core practice „ Leadership and coordination to develop systems and maintain routine assessment practice „ Administrative support to monitor referrals and record service uptake „ Knowledge of local service provision Education and training are an essential component of any method of assessment. This should aim to develop knowledge about risk, vulnerability and resilience, and assessment skills. Relationship building and communication skills are important as our understanding of individual and family coping will reflect the quality of our relationships. Training in family work will also enhance the quality of assessment32. Managerial commitment and leadership is needed if systematic assessment is to become part of core practice across clinical teams and palliative care settings. Coordination and administrative support enable assessment to become part of routine practice. It is important to maintain records so that we know the proportion of people being assessed as vulnerable and to monitor their subsequent

Who should be assessed?

Given the problems associated with assessment described earlier, it is important to consider what steps should be taken when assessment is not possible. For example, there may have been insufficient contact with the family to assess their needs or the patient may have died in a different setting, eg in a care home. Assessment is not realistic if there have not been opportunities for discussion with family members. It is dangerous and unethical to make judgements based on assumptions alone. In these situations some services contact families after bereavement to assess need. Written information about how to access support should always be provided whether or not assessment has been possible.

Ethical issues As family assessment is a core component of palliative care, it is important that family members are informed that we are interested in their needs as well as those of the patient and that palliative care includes support after bereavement. Preferably this should be done at the first contact or as early as possible.

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Assessment in relation to bereavement is no different from ongoing assessment of family need. The aim is not to limit but to facilitate access to appropriate services and to make the best use of resources. Assessment documentation is subject to the Data Protection Act and assessment decisions should not be passed to other agencies without consent. Ethical considerations arise if the organisation does not see the family as the focus of care or if it is intended to use assessment information to make referrals to an external provider of bereavement care rather than an in-house bereavement service. In the latter case it is essential to obtain explicit consent before information is given to a separate organisation. Bereaved people should not feel pressured into accepting support or counselling. If a person does not want to take up an offer of support we should respect their decision and reassure them that they are welcome to contact us should they change their mind at a later date.

Ensuring equitable access to services While assessment aims to improve access to support or counselling for those who may be more vulnerable, the intention is not to withhold support from those who want it even if we have no evidence that their need is particularly high. Experience shows that assessment will never be perfect; time may be limited, it may have been difficult to have conversations with key family members or some may have been less visible to staff during the patient’s illness. It is important to ensure that information about bereavement services is readily available early in bereavement so that they know how to access help3.

What is involved in making an assessment? „ Gathering information throughout the patient’s illness through observation and discussion with the family. The more collaborative our approach the better. A ‘snapshot’ of information, particularly at a time of crisis, is unlikely to be an accurate reflection of family coping, and bereavement assessment is improved if it builds on pre-bereavement work with the family. „ Formal and informal discussions by the multiprofessional team to develop a more robust understanding of individual ways of coping. Responsibility for completing the assessment should be taken by the individual or team who knows the patient and the family best. „ Documenting assessment using an assessment form. This documentation is best begun pre-bereavement but should be completed as soon as possible after the patient’s death. „ Making decisions about the type and level of follow-up to be offered. „ Administering the process to ensure that all families are included. „ Proactively offering services to those considered to be vulnerable and documenting the use of support. „ Giving written information about grief and how to access support to all bereaved families including those not considered to be vulnerable.

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Creating an assessment form

Summary

This publication does not provided an example of an assessment form in recognition of the diversity in palliative care bereavement services. Each service will want to create a form geared to the organisation within which it is located. This documentation could include:

This publication has described the reasons for assessing need in relation to bereavement. There are a number of problems associated with traditional assessment methods, and this publication suggests that understanding the way people cope is key to understanding both resilience and vulnerability in the face of risk. Vulnerability is associated with persistently overwhelmed feelings or when the desire to control emotions is continually defeated. As with traditional methods, the quality of assessment will be influenced by the degree to which we work collaboratively with families, the level of organisational commitment to bereavement assessment and the training and resources available to underpin practice. Considering how people cope is an important addition to traditional methods. However, research is needed to test this new approach to assessment in practice.

„ Patient information, eg name, address and date of death „ What aspects of palliative care were used by the patient, eg in a large palliative care service day hospice, community and inpatient services may all have been involved „ A genogram „ Contact details for key family members „ Staff comments in relation to the circumstances of the death, eg how

distressing was the death for family

members?

„ The ‘Responses to Loss’ matrix (one for each person assessed) „ Documentation in relation to decisions re follow up „ Practical information, eg whether information leaflets have been given, who completed the form, etc. Each service will vary in the process of assessment and the practicalities of service delivery, but when designing an assessment form consideration should be given to data protection issues such as confidentiality. For example, the matrix and additional assessment information can be linked to patient and family member names and addresses by using case numbers rather than names.

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References 1. Parkes C. Bereavement. In Doyle D, Hanks G and Macdonald N. (eds). Oxford Textbook of Palliative Medicine. Oxford: Oxford University Press; 1993. p665-678. 2. Davies E and Higginson I. (eds). Better palliative care for older people. Europe, Copenhagen: World Health Organization; 2004. 3. National Institute for Clinical Excellence (NICE). Improving supportive and palliative care for adults with cancer. London: NICE; 2004. 4. Stroebe M, Hansson R, Stroebe W and Schut H. Handbook of bereavement research: consequences, coping and care. Washington DC: American Psychological Association; 2001. 5. Parkes C. Love and loss. London: Routledge; 2006. 6. Aranda S and Milne D. Guidelines for the assessment of complicated bereavement risk in family members of people receiving palliative care. Melbourne Centre for Palliative Care; 2000. 7. Stroebe W and Schut H. Risk factors in bereavement outcome: a methodological and empirical review. In Stroebe M, Hansson R, Stroebe W and Schut H. (eds). Handbook of bereavement research: consequences, coping and care. Washington DC: American Psychological Association; 2001. p349-371. 8. Relf M. Risk assessment and bereavement services. In Payne S, Seymour J, Skilbeck J and Ingleton C. Palliative care nursing: principles and evidence for practice. Buckingham: Open University Press; 2004. p521-554. 9. Parkes C. Risk factors in bereavement: implications for the prevention and treatment of pathologic grief. Psychiatric Annals 1990; 20: 308-313.

10. Parkes C. Bereavement counselling: does it work? BMJ 1980; 281: 3-6. 11. Schut H and Stroebe M. Interventions to enhance adaptation to bereavement. Journal of Palliative Medicine 2005; 8: S-140-146. 12. Field D, Reid D, Payne S and Relf M. Survey of UK hospice and specialist palliative care adult bereavement services. International Journal of Palliative Nursing 2004; 10(12): 569-576. 13. Payne S and Relf M. Survey of bereavement needs assessment and support services. Palliative Medicine 1994; 8: 291297. 14. Beckwith B, Beckwith S, Gray T, Micsko M, Holm J, Plummer and Flaa S. Identification of spouses at high risk during bereavement: a preliminary assessment of Parkes and Weiss' risk index. Hospice Journal 1990; 6: 35-45. 15. Levy L, Derby J and Martinowski K. The question of who participates in bereavement research and the bereavement risk index. Omega 1992; 25: 225-238. 16. Agnew A, Manktelow R and Jones L. A systematic literature review and a national audit of bereavement risk assessment practice in Marie Curie hospices. Report. London: Marie Curie Cancer Care; 2007. 17. Stroebe M, Folkman S, Hansson R and Schut H. The prediction of bereavement outcome: development of an integrative risk factor framework. Social Science and Medicine 2006; 63: 2440-2451. 18. Machin L. Exploring a framework for understanding the range of response to loss; a study of clients receiving bereavement counselling. Keele University 2001: Unpublished PhD thesis.

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19. Stroebe M and Schut H. The dual process model of coping with bereavement: rationale and description. Death Studies 1999; 23: 197224. 20. Machin L and Spall R. Mapping grief: a study in practice using a quantitative and qualitative approach to exploring and addressing the range of response to loss. Journal of Counselling and Psychotherapy Research 2004; 4(1): 9-12. 21. Machin L. The Adult Attitude to Grief Scale as a tool of practice for counsellors working with bereaved people. Keele University 2007. Unpublished study report. 22. Machin L. Resilience in bereavement. In Monroe B and Oliviere D. Resilience in palliative care – achievement in adversity. Oxford: Oxford University Press; 2007. p157165. 23. Kellehear A and Young B. Resilient communities. In Monroe B and Oliviere D. Resilience in palliative care – achievement in adversity. Oxford: Oxford University Press; 2007. p223-238.

27. Zaider T and Kissane D. Resilient families. In Monroe B and Oliviere D. Resilience in palliative care – achievement in adversity. Oxford: Oxford University Press; 2007. p67-81. 28. Ainsworth M, Blehar M, Waters E and Wall S. Patterns of attachment: a psychological study of the strange situation. Hillsdale, NJ: Erlbaum; 1978. 29. Horowitz M. Stress response syndromes. Northvale, NJ: Aronson; 1976/1986. 30. Martin T and Doka K. Men don’t cry...women do. Philadelphia: Brunner/Mazel; 2002. 31. Angus L, Levitt H and Hardke K. Narrative processes and psychotherapeutic change. Journal of Clinical Psychology 1999; 55: 1255-70. 32. Kissane D and Bloch S. Family focused grief therapy. Buckingham: Open University Press; 2002.

24. Walter T. On bereavement: the culture of grief. Milton Keynes: Open University Press; 1999. 25. Rosenblatt P. Social constructionist perspective on cultural difference in grief. In Stroebe M, Hansson R, Stroebe W and Schut H. (eds). Handbook of bereavement research: consequences, coping and care. Washington DC: American Psychological Association; 2001. p285-300. 26. Greene R. Holocaust survivors: a study in resilience. Journal of Gerontological Social Work 2002; 37(1): 3-18.

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Appendix 1– Matrix of ‘Range of Responses to Loss’ Please tick boxes that best reflect observed responses Overwhelmed + Vulnerable Vulnerability Feelings: Continual and/or high Personal capacity reduced (physical, psychological levels of distress. problems, impact past stressors) Thoughts: Preoccupied with the Details: loss. Views self as a victim of circumstances.

Controlled + Vulnerable Feelings: High anxiety about losing control or expressing strong feelings. Thoughts: Has difficulty in accepting reality. Cognitive defences may not effectively control emotions. Behaviours: Confused, Behaviours: Finds it hard to cry. unpredictable. Circumstantial risk (concurrent Temper or irritation under factors, eg difficult death, caring Life perspective: Generally pressure. for others, financial problems). negative outlook. Life perspective: Believes in Details: being strong but struggles to Social support: Perceives maintain this. support as lacking or makes poor Social support: Reluctant to use of it. make use of support or disclose personal needs. Overwhelmed

O/V

Vulnerability

Controlled

C/V

The desire to (re)establish control is central.

Powerful emotions are central. O

C Core dimensions of grief

O/R Overwhelmed + Resilient Feelings: Experiences feelings but not continually dominant. Thoughts: Able to understand and acknowledge impact of loss. Behaviours: Generally functions well. Life perspective: Has hope for the future even when currently distressed. Social support: Uses available support well.

Resilience

Resilience Personal capacity – inner resources adequate to meet demands. Details:

C/R Controlled + Resilient Feelings: Not visible. Thoughts: Thinks clearly re strategies to manage loss. Behaviours: Functions practically and effectively.

Circumstantial factors – positive (support available, demands manageable). Details:

Life perspective: Believes in importance of being strong. Social support: Makes few demands on social support.

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Appendix 2 – Case study: Sandra Sandra is 28. Her mother, Jill, was diagnosed with lung cancer three years ago and died recently in the hospice on her second admission for symptom control. Jill’s condition deteriorated rapidly and her death seemed sudden to the family. Sandra has three children aged two, five, and eight and her partner has recently left her. He was physically abusive towards her and their relationship had not been good for several years. Sandra describes her relationship with Jill as close and they saw each other daily. The hospice staff have observed that Sandra has been upset when visiting but she says that she feels better after a good cry. She can talk openly to her sister and finds this comforting. Sandra says that she has tried to remain strong for her mum, dealing with the practical aspects of caring for her as well as looking after her own family, often crying after the children have gone to bed. She says that she expects to be sad for some time but that she knows that this will not last for ever: “We are a family of survivors”. She also says: “I’m the eldest now and I’m going to be strong – just like Mum”. Should Sandra be offered bereavement support?

„ Social support: Sandra has a close, warm relationship with her sister. Her ex-partner is unsupportive, unpredictable and the relationship is ‘messy’. „ Personal vulnerability: Sandra is also dealing with the break-up of her relationship with her partner. Although she feels she made a ‘bad mistake’, her self esteem seems robust and she is determined to ‘sort out things for the children’. She has no history of anxiety or depression. „ Other factors: Sandra is faced with many practical issues arising from the break-up of her relationship, eg her house is owned jointly with her ex-partner.

Coping style „ Sandra can express her sadness and her feelings of distress. „ She can share her feelings with her sister. „ She can control her emotions to fulfil the demands of being a mother and a carer. „ She is resourceful and able to manage being a working mum. „ She feels strong and hopeful about her future.

Assessment decision Risk factors „ Circumstances of the death: Jill’s death was anticipated but seemed ‘sudden’. Sandra’s initial distress was quickly accompanied by feelings of relief that Jill was no longer suffering. „ Meaning of the relationship: Sandra depends on Jill for both emotional and practical support. However, she has become less dependent during Jill’s illness and feels that she has taken on some of her mother’s strength. She feels her life has improved since her partner left.

Sandra is both facing bereavement and dealing with the ending of a difficult relationship without the support of her mother. However, she has internal and external resources to help her cope and seems to be resilient. It was decided not to offer her oneto-one support proactively although she was given verbal and written information about the availability of support should she need it. In Appendix 3 this case study is used to provide an example of the use of the ‘Responses to Loss’ matrix.

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Appendix 3 – Case study example of use of ‘Range of Responses to Loss’ matrix: Sandra Overwhelmed + Vulnerable Vulnerability Feelings: Continual and/or high Personal capacity reduced (physical, psychological levels of distress. problems, impact past stressors) Thoughts: Preoccupied with the Details: Recent separation, loss. Views self as a victim of abusive partner. Potential housing / financial problems. circumstances. Young children. Behaviours: Confused, unpredictable. Circumstantial risk (concurrent factors, eg difficult death, caring Life perspective: Generally for others, financial problems). negative outlook. Details: Dependent Social support: Perceives relationship with Mum. support as lacking or makes poor use of it.

Overwhelmed

O/V

Vulnerability

Controlled + Vulnerable Feelings: High anxiety about losing control or expressing strong feelings. Thoughts: Has difficulty in accepting reality. Cognitive defences may not effectively control emotions. Behaviours: Finds it hard to cry. Temper or irritation under pressure. Life perspective: Believes in being strong but struggles to maintain this. Social support: Reluctant to make use of support or disclose personal needs. Controlled

C/V

The desire to (re)establish control is central.

Powerful emotions are central. O

C Core dimensions of grief

O/R Overwhelmed + Resilient Feelings: Experiences feelings but not continually dominant. D Thoughts: Able to understand and acknowledge impact D of loss. Behaviours: Generally functions D well. Life perspective: Has hope for the future even when currently D distressed. Social support: Uses available support well. D

Resilience

C/R

Resilience Personal capacity – inner resources adequate to meet demands. Details: Good relationship with Mum. Feels hopeful and strong. Circumstantial factors – positive (support available, demands manageable). Details: Can share with sister.

Controlled + Resilient Feelings: Not visible. Thoughts: Thinks clearly re strategies to manage loss. D Behaviours: Functions practically and effectively.

D

Life perspective: Believes in importance of being strong. D Social support: Makes few demands on social support.

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Appendix 4 – Possible protocol for bereavement needs assessment Ongoing collaborative assessment of family response to patient’s illness Assessment not possible – insufficient contact with family member

Patient dies

Implement NICE component 1 – give information about grief

No family/family object to follow up

Complete bereavement needs assessment form Decision documented Make decisions re follow up

Contact by bereavement service to assess

Vulnerable Resilient Decided level of support Support declined Offer support

Provide support

Provide information about grief, how to self-refer and other local and national resources Bereavement needs assessment

Guidance for bereavement needs assessment in palliative care

Help the Hospices Hospice House 34–44 Britannia St London WC1X 9JG Tel: 020 7520 8200 www.helpthehospices.org.uk Registered Charity in England and Wales, Help the Hospices No. 1014851 Company Limited by Guarantee registered in England No. 2751549. Registered office Hospice House as above.