Guidance for bereavement needs assessment in palliative care Second edition By Marilyn Relf, Linda Machin and Nikki Archer
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 which may occur. The publisher 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. Other than the matrices on pages 30 to 33, 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. © 2010 Help the Hospices Marilyn Relf, Linda Machin and Nikki Archer have asserted their right under the Copyright, Designs and Patents Act 1988 to be identified as the authors of this work. ISBN: 978-1-871978-84-1 Published by Help the Hospices in September 2010 Printed by PWP FS Print & Design, Hoddesdon, UK
Contents
Foreword 2
Summary 26
About the authors 4
References 27
Introduction 5
Appendices 30
1. Perspectives on assessment 6
Appendix 1 – Original Range of Response to Loss matrix 30
Why assess need? 6 Rationale for assessing need? 6 Palliative care bereavement services 7 How is need currently assessed? 8 Problems with current methods of assessment 8 2. Introducing new concepts: moving forward – from risk factors to coping styles 9 The Range of Response to Loss model 9 Connections between the Range of Response to Loss model and other theories 10 Changing reactions to changing circumstances 11 The Range of Response to Loss matrix 12 Social and cultural context 14 3. Assessing need using the Range of Response to Loss approach 15 Recognising responses to loss 15 Assessing need 18 4. Organisational issues in implementing assessment 20 Organisational components of assessment 20 Practitioners as assessors 23 Consequences for care 24
Appendix 2 – Revised Range of Response to Loss matrix – 1 (recommended version) 31 Appendix 3 – Revised Range of Response to Loss matrix – 2 32 Appendix 4 – Revised Range of Response to Loss matrix – 3 33 Appendix 5 – Case study: Sandra 34 Appendix 6 – Case study example of the use of the Range of Response to Loss matrix 36 Appendix 7 – Common themes in the training programmes developed by St Giles Hospice, Highland Hospice and St Nicholas Hospice Care 37 Appendix 8 – Example of an information leaflet explaining family care (Highland Hospice) 38
Foreword
The first edition of ‘Guidance for bereavement needs assessment in palliative care’ published in 2008 provoked considerable and useful debate about issues of informed consent, resource allocation and the validity and value of the attribution of risk to individuals1,2. This debate has close links with the important and active dialogue concerning differing interpretations of the evidence for the effectiveness of bereavement counselling and the disputed existence of possible negative effects, most memorably conducted in Bereavement Care throughout 2009-20103,4,5,6. It is clear that current evidence points most reliably to improvements for clearly symptomatic bereaved individuals, with modest benefits appearing to be associated with ‘high risk’ grievers. 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 as patients spend shorter periods in specialist end of life care settings, leaving staff less time to get to know family and friends and often with less training in psychosocial care. In a time-pressured service environment, risk assessment can rapidly be reduced to an inaccurate series of tick boxes. This significantly revised and expanded second edition offers an update on the use of Machin’s adapted Range of Response to Loss (RRL) model, which is both thought provoking and thorough. The model 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. It considers the strategies people are using to cope with the strain of impending bereavement. This new approach to bereavement assessment was piloted in three hospices and a recent publication reports on the implementation study7.
2
This second edition rehearses the issues raised in practice and contains revisions to both the implementation guidance and the matrix itself, prompted by the action research study. Several key elements in successful implementation are emphasised: the importance of staff induction training; of organisational ‘buy-in’ at the most senior level, as well as from practitioners; and the commitment to collaborative work with families. It is underlined that the matrix has been developed for use in settings where a bereavement service is an integral part of the organisation. All of these factors suggest significant limitations to the practicability of the wider use of the matrix as part of routine assessment in acute or generalist settings. Nonetheless, like the authors, I am convinced of the value of a methodology that encourages practitioners to consider how people are likely to cope and that focuses on resilience as well as vulnerability and on social as well as intrapsychic processes. It is 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. However, the emotions and experiences associated with bereavement will leave some feeling overwhelmed and insecure. As Stroebe8 emphasises: ‘We should not lose sight of research on mental and physical health consequences of bereavement… bereavement is associated with excess risk of mortality… it is related to decrements in physical health… (and) a variety of severe psychological reactions’. Whilst it appears that the role of the individual actively seeking help is closely related to positive outcomes, the question remains about how we identify those who do not ask for help, but are either experiencing, or at increased risk of experiencing, negative consequences as a result of bereavement. Regardless of the general
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
applicability, or indeed desirability, of routine assessment for bereavement risk shortly after a death, I believe that the RRL model would form a helpful part of training for health and social care professionals. This approach needs to become part of professionals’ ‘mind set’ when considering the information and support that should be available to bereaved individuals. We also need to think more carefully about the information that should be available to all bereaved people, not only about what to expect in bereavement and the availability of local services, but about what might make an individual feel concerned about themselves or someone close. Such prompts can give people the permission they need to contact a service for support, and the RRL model offers possibilities as part of the ongoing challenge to develop public understanding and emotional literacy about loss.
bereavement support comes in many forms, but economic and human resources for bereavement services have always been in particularly short supply, and it is vital that such resources are allocated effectively. The authors of this publication have made a significant contribution to ongoing work to improve practice. It is right that we should challenge ourselves with difficult questions. It is clear that we do not yet have all the answers. As the authors themselves comment, further research is needed. The uncertainties and difficulties involved must not hinder the importance of the ongoing endeavour. I commend this publication to all who seek to deliver effective and responsive bereavement support. Dame Barbara Monroe Chief executive St Christopher’s Hospice, London
Health and social care budgets are inevitably limited and likely to become more so. Appropriate
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
3
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 multimethod 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 has published training materials 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 Response 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. She is the author of ‘Working with loss and grief: a new model for practitioners’9. Nikki Archer is the supportive care manager at St Giles Hospice, Lichfield. She was instrumental in setting up the Association of Bereavement Service Coordinators in Palliative Care (ABSCo) and is currently a member of the Department of Health’s End of Life Care Bereavement Advisory Group. Nikki has a background in nursing, having previously worked within the HIV field, and has undertaken research into the needs of carers.
4
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
Introduction
The second edition of ‘Guidance for bereavement needs assessment in palliative care’ provides an update to the first edition following an extensive action research project studying the implementation of the Bereavement Needs Assessment (BNA) approach to assessment in three hospices7. In this second edition we present revised versions of the original assessment matrix and provide more detailed guidance on the organisational aspects of bringing routine, systematic bereavement needs assessment procedures into everyday practice. This includes an example training programme and suggestions for resolving ethical concerns. Recently, several policy documents have been published that aim to improve end of life care for all patients with life-limiting and terminal illnesses10,11,12. These documents all include the role of assessment in relation to bereavement. However, it is difficult to formulate robust, reliable assessments unless there is a commitment to family support. Assessment requires engagement with the family and discussions throughout the patient journey and should not be left to the last days of patients’ lives. Bereavement services also need to be in place, as assessment is not a standalone activity but part of a process aiming to match support to need.
The aim of this publication is to support the assessment of need for bereavement care in adults’ palliative care services; it is based on the assumption that practitioners are using the holistic, family-focused approach to care that is central to palliative 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 people13,14,15. This publication outlines the rationale for assessment, describes current methods and discusses their limitations. It recommends a new approach 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 decisionmaking 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. Marilyn Relf, Linda Machin and Nikki Archer
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
5
1. Perspectives on assessment
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, are 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 problems16. 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 behaviour17. Reviews of the factors that influence grief18,19,20 conclude that these differences in health outcome are influenced by the: n events and circumstances leading up to the death n meaning of the relationship with the deceased n personal vulnerability of the bereaved person n availability of social support and economic resources. Therefore, ‘risk factors’ are the characteristics of bereaved people and the features of their situation that may increase the probability of vulnerability21. These factors have been used to inform decision making about who may benefit from bereavement services.
6
Early studies of ‘bereavement counselling’ indicate that intervention only makes a measurable difference to those with ‘high’ levels of vulnerability or ‘risk’22. While ‘bereavement counselling’ is often used indiscriminately to mean a range of interventions, from befriending to therapy, there is now general agreement that offering therapy to those who are resilient is not helpful and may be harmful23. This view is supported by the conclusions of recent metaanalyses of the effectiveness of bereavement care 3 ,6,24,25 that there is no evidence to support outreach support to all and that services only seem to benefit those who are ‘at risk’ or struggling with their grief.
Rationale for assessing need The rationale for assessing need in relation to bereavement support may be summarised as follows: n 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. Palliative care providers are well placed to assess need and provide continuity of care to family members after bereavement. n There is a duty of care to minimise the risks to health associated with bereavement by offering support proactively to those who may be at risk of developing complicated grief. n There is no evidence that all bereaved people will need help, and support should be channelled towards those who are more vulnerable. n Services need to make the best use of limited resources.
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
n Assessment can clarify concerns and in itself be helpful to those being assessed, as it offers them opportunities to discuss their situation. n Assessment facilitates objective decision making about the type and level of bereavement service that may be needed. Bereaved people should ‘receive support to facilitate grieving, to prevent the detrimental consequences of bereavement’15. The role of palliative care bereavement services, therefore, is to prevent or ameliorate the detrimental health consequences associated with bereavement, often referred to as ‘complicated grief’. Given the nature of grief, which is often intense and problematic in the period following a loss, it is not possible to state that grief has become complicated for some time. Complicated grief may be recognised when the symptoms of grief are persistent over a prolonged period of time; criteria for ‘prolonged grief disorder’ suggest that such symptoms need to be continually present for at least six months before a diagnosis can be made26. However, this should not be used as an argument to dismiss the need for support until grief has become persistently problematic. Reaching out to people is a humane response to need, may help those who are struggling to use their resources more effectively and maximises resilience. People who have more complex grief reactions have been found to be less likely to self-refer to bereavement services27,28. Therefore, proactively engaging with these people may be beneficial.
Palliative care bereavement services Although the rationale for developing palliative care bereavement services was to prevent the health problems associated with bereavement13, 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 care in the UK29. Support strategies include memorial services, social groups, therapeutic groups and drop-in events. The most common element is one-toone help described as ‘support’, ‘befriending’ or ‘counselling’ and is often provided by volunteers29. Many services have adopted a universalistic approach and offer the full range of support available to everyone. However, one-to-one support is usually offered more proactively to those whom the staff consider to be more vulnerable29. Such services are unlikely to be available in acute healthcare settings where the emphasis is on support in the immediate period surrounding the death, providing information and signposting bereaved people to services available in the locality. We must emphasise that this publication has been developed for use in settings where a bereavement service is an integral part of an organisation rather than a separate entity. To pass assessment information across settings raises complex ethical issues that are outside the scope of this document.
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
7
How is need currently assessed? Assessment in relation to bereavement support is widely undertaken in palliative care, usually by nurses29. In just over half of UK services assessment is informal with nurses using their clinical judgement to decide who may need support after bereavement. Meanwhile, in about 40% of UK services there is a more structured approach utilising checklists based on established risk factors29. These checklists ‘measure’ accumulated vulnerability and may be unscored or have numerical weightings; they are largely derived from Parkes’ Bereavement Risk Index (BRI)30. 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.
rather than patient focused varies and family members may be unaware that their needs are being considered. Education to support assessment may not be given high priority33 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 may be based on assumptions rather than explicit information. It is not surprising that there is discontent with current assessment practice33. There is a need both 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.
Problems with current methods of assessment There are problems with both formal and informal methods of assessment20. Informal methods, relying on individual assessment and wordof-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 outcome31,32. This is not surprising as its reliability depends on nurses having the time, skills and knowledge to make assessments. The length of time spent as a hospice inpatient has decreased markedly since the 1970s when the BRI was introduced so 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, while nurses may find it intrusive to ask specific questions in relation to bereavement risk30. In practice the degree to which palliative care is family focused
8
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
2. Introducing new concepts: moving forward – from risk factors to coping styles
Stroebe at al34 argue that the extent to which individual coping resources are adequate to meet the demands of a stressful situation determines whether people are likely to be more resilient or more vulnerable. Ways of coping influence individual health outcomes, rather than the presence of risk factors alone. Therefore, an integrative approach to assessment is needed that examines coping as well as risk factors. As adults develop variable 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 Response to Loss’ model – which was validated in a study of bereaved people35 – has been adapted to provide a framework for understanding coping in those facing death and bereavement.
The Range of Response to Loss model The Range of Response to Loss (RRL) model proposes that responses to loss represent a spectrum of reactions that lie at the heart of grief (the term ‘grief’ is used here to describe reactions to loss both before and after bereavement). At one end of the spectrum is the distressing upsurge of overwhelming emotions and at the other is the pull to counter the sense of powerlessness in order to regain control. 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).
Figure 1 – Core dimensions of grief
Overwhelmed
Controlled
Focus on feelings
Focus on thinking and action
The management of these competing grief reactions is mediated by a second spectrum of factors, those of coping. These may manifest as resilience or vulnerability. A capacity to balance the competing forces of grief typifies resilience, ie the individual has sufficient internal and external resources to help them to survive a challenging life experience, often with a renewed sense of personal strength (Figure 2). Conversely, vulnerability is evident when there is an incapacity to manage the complex internal and external domains of grief, eg where there is conflict and tension between the feelings of overwhelming distress and the desire for control, and/or limited sources of social support or social pressures (Figure 3 – see page 10). Figure 2 – Resilience
Overwhelmed
Controlled
Focus on feelings
Focus on thinking and action
A comfortable capacity to oscillate between overwhelmed and controlled responses
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
9
Connections between the Range of Response to Loss model and other theories
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 The process of effective adjustment is the capacity to: n face the emotional consequences of loss with acceptance n achieve a revised sense of what can be changed/controlled n reach a sense of equilibrium, usually as a result of having good support and acquiring a sense of meaning.
The notions contained within Machin’s model35 are consistent with other theoretical frameworks used by those working with dying and bereaved people (Table 1). All of these frameworks suggest that resilience reflects the ability to move or oscillate36 between experiencing grief and controlling emotions in order to manage everyday life. Machin35 used the RRL model to create a selfassessment tool – the Adult Attitude to Grief (AAG) scale – which was validated in the context of bereavement care37,38. The AAG scale helps people to describe how they are experiencing the different elements of grief in a self-report questionnaire. This publication has adapted the concepts of the scale to enable staff to understand coping responses and assess vulnerability.
Table 1 – Parallels between Range of Response to Loss and key models of grief Range of Response to Loss35
Overwhelmed
Resilient*
Controlled
Attachment theory39
Anxious/ambivalent
Secure
Avoidant
Stress theory40
Intrusion
Dual process model36
Loss orientation
Avoidance Restoration orientation Oscillation
Personality related41
Intuitive grief – emotional coping
Blended grief – emotional and cognitive coping
Instrumental grief – cognitive coping
* The capacity to balance the various elements of grief. An incapacity to balance the varied elements of grief indicates vulnerability.
10
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
Changing reactions to changing circumstances At times of crisis in the illness trajectory (such as diagnosis, recurrence, cessation of active treatment and bereavement) some family members may show a tendency to being overwhelmed and others to control. Many people will feel more comfortable in one mode of response but most will react in both these ways at various times when faced with the terminal illness of a family member. Resilience is evident when 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 meaning35,42. Following Stroebe and Schut36, there is a relatively comfortable oscillation between feelings of loss and the demand to adjust to the consequences of loss by being in control (Figure 2 – see page 9).
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 10).
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
11
The Range of Response to Loss matrix The management (or not) of the competing forces of feelings (overwhelmed response) and the need for action and a sense of agency (controlled response) are shaped by personal resources and circumstantial factors. The combination of these resources and circumstantial factors influence whether an individual will be more resilient or more vulnerable. Table 2 provides a matrix to help to identify these various factors. This matrix is a revised version of the original matrix (Appendix 1 – page 30) published in the first edition of this publication. It was revised following feedback from users. This revised version is our preferred matrix, but two further versions were also developed during the piloting process and we include them here to provide a choice (see Appendix 3 and Appendix 4 on pages 32 and 33). The matrix shows the interconnection between the core dimensions of grief (overwhelmed and controlled responses) and the spectrum of factors contributing to vulnerability or resilience. The ‘compass’ (the central part of the matrix) shows how both overwhelmed and controlling responses are not of themselves indicators of vulnerability. Whether a person is more vulnerable or more resilient reflects how these are linked to wider personal and circumstantial factors that influence the capacity for coping (or not).
In the same way, the controlling reaction to loss may manifest in different ways depending on 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 may 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 can be used in the assessment of vulnerability; multiple agreement with factors in the top half of the matrix indicates 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. It is important to recognise that an assessment can only provide an indicator of current loss response. Fluctuating reactions will inevitably reflect changes in the illness of the patient and a shifting capacity to cope. These changes need to be recognised and noted.
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. A lack of personal resourcefulness may reflect factors such as current or past mental health problems. Feeling overwhelmed by emotion is likely to be less persistent among people who are self-confident 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.
12
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
Table 2 – Revised Range of Response to Loss matrix – 1 Factors contributing to ‘vulnerability’ (Circle as applicable) Personal capacity limited by past or present physical or psychological problems; difficulty in dealing with stress. Circumstantial risk is heightened by, for example, the patient’s illness/death being difficult, concurrent caring demands (children, sick relative, elderly parents), relationship/financial/housing problems, etc. Social factors: socially isolated; perceives support as lacking or makes poor use of it. Overwhelmed + Vulnerable Vulnerability Controlled + Vulnerable Strong emotions are uppermost 1. Struggle to manage distressed A fear of loss of control makes and make day-to-day feelings and the pull to stay clear thinking and acting difficult living difficult. in control. when dealing with day-to-day 2. Unable to make sense of this life. experience of loss. Always Always Always Most of the time Most of the time Most of the time Sometimes Sometimes Sometimes Never Never Never NK NK NK Comments
Vulnerability O/V
Comments C/V
O C Core dimensions of grief O/R Overwhelmed + Resilient Able to face and accept feelings even when grief is still powerfully present.
C/R
Resilience Resilience Controlled + Resilient Personal capacity Able to think and act clearly and 1. Able to accept what cannot manage life demands effectively. be changed and able to act in areas where change is possible. 2. Can make sense of this experience of loss.
Always Always Always Most of the time Most of the time Most of the time Sometimes Sometimes Sometimes Never Never Never NK NK NK Factors contributing to ‘resilience’ (Circle as applicable) Personal capacity: inner resources are adequate to meet the demands of the loss, eg positive past experience, positive self esteem, hopeful outlook. Circumstantial factors are positive, eg uncomplicated events surrounding illness/death, other life demands are manageable, etc. Social factors: socially integrated; support felt to be adequate to needs. NB. The personal, circumstantial and social factors identified as contributing to vulnerability and resilience are not absolute determinants of those states. They should be understood within the wider grief responses and coping mechanisms shown in the matrix.
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
13
Social and cultural context The cultural and community context in which people grieve also shapes responses to loss43. For example, in the UK emotional control is given greater value than expressing feelings, particularly among men44, whereas other cultures may expect emotions to be shown overtly. Therefore, it is important to be aware of the degree to which there is social reinforcement of individual attitudes through shared societal and family attitudes, beliefs and rituals45. Individual core beliefs, attitudes and styles of response to loss may be compatible or in conflict with the wider social group. A significant factor in resilience is social integration and support46; alongside the observation of individual grief responses, it is important to consider the social context and the family style of coping47. Families and friendship groups may provide comfort and support or be a source of tension. The ‘family’ is used here to identify a wide range of people who are close/ intimate with the patient and for whom the illness of the patient has immediate emotional and practical consequences. 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. Inter-generational conflict and cross-cultural differences may cause some people to feel very isolated.
preferences. For example, it can be extremely hard for people to talk about their sexual identity or orientation unless our language conveys acceptance of diversity. Asking “Do you have a partner?” invites non-heterosexual people to talk about their relationships whereas “Are you married?” means that we are confronting them with ‘heterosexist’ assumptions. Similarly, living in a multicultural society means that our patients and those close to them come from diverse backgrounds with different needs and expectations of what is good end of life care. It is important to recognise that the majority of studies of risk factors in relation to bereavement have been undertaken in the USA, UK, Australia and the Netherlands (with the exception of epidemiological studies of mortality rates) with white spouses (mainly widows). This means that our concepts of ‘risk’ may be biased. We hope that considering ‘coping’ and engaging carers in conversations rather than relying on observations will help to reduce culturally biased assumptions being made about behaviour. It is also 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.
One important factor to consider when thinking about assessment is the degree to which our organisations are inclusive of social difference and cultural diversity. Grief may be disenfranchised48 if we do not explicitly recognise diversity and adopt practices that help people feel able to tell us about themselves, their lifestyles and cultural
14
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
3. Assessing need using the Range of Response to Loss approach
Recognising responses to loss This section describes specific and general indicators for the core responses to loss (overwhelmed or controlled) and for the coping factors (resilience and vulnerability). The descriptors focus on individuals as there are usually more opportunities for one-to-one conversations and assessment. 1. Overwhelmed response Specific indicators: n Demonstrates a frequent intrusion of thoughts and feelings about the patient, the illness, the outcome, etc n Conveys a sense that current distress will persist n Conveys a sense that everything is changed (for the worse), good things will not be recovered and life has lost its meaning General indicators: n Tearful n Anxious and agitated n Fearful n Depleted resources n Lack of trust in themselves n Pessimistic n Frequently seeking reassurance n Demanding of staff attention n Unable to process information n Critical of patient’s treatment
2. Controlled response Specific indicators: n Values courage and fortitude in their response to the patient’s illness and its outcome n Believes that feelings should be controlled as a demonstration of strength n Believes that they should avoid burdening other people with their feelings n Believes that managing a loss is best undertaken by getting on with life and diverting from things that cannot be changed General indicators: n Little or no emotional response to the situation n Matter of fact in discussions about the illness and its outcome n Difficulty in responding to other people’s emotions n Lacks trust in other people n Does not seek support for themselves n Major focus on practical concerns n Able to manage other life demands n Self-reliant
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
15
3. Resilient response Specific indicators: n Can face the issues of impending loss resulting from the illness
4. Vulnerable response Specific indicators: n Avoids facing the issues of impending loss resulting from the illness
n Demonstrates coping strategies that make use of inner resources and external sources of support
n Does not demonstrate coping strategies that make use of inner resources and external sources of support
n While acknowledging the current emotional and social impact of the illness, there is hope that strength and meaning may come from the experience
n Cannot acknowledge the current emotional and social impact of the illness
General indicators: n Ability to describe situations coherently n Ability to engage in discussions about the illness and its outcome n Can show emotion but distress is not persistent n Ability to be open to the changing needs and emotions of the patient n Accepting of offers of help and support
n Does not feel hopeful that strength or meaning may come from the experience General indicators: n Unpredictable responses to discussions about the illness and its outcome, eg sometimes emotional and at others matter of fact n Angry and frustrated n Depressed n Difficulty in relating to staff n Ambivalent about accepting support
n Can take ‘time out’ and attend to own needs These indicators can be considered alongside traditional risk factors (identified on page 6) to help us to understand individual differences in coping. Table 3 provides a detailed version of the RRL matrix grouping different manifestations of loss in the four quadrants (overwhelmed and vulnerable, controlled and vulnerable, overwhelmed and resilient, controlled and resilient) in the domains of feelings, thoughts, behaviours, life perspective and social support. The original RRL matrix incorporated these domains but was found to be too complex as a practice instrument7. In this publication, we provide a simpler version of the matrix (Table 2 on page 13 and Appendix 2 on page 31). Table 3 provides an aid to completing this simpler version.
16
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
Table 3 – Identification of the variable responses to loss in the four matrix quadrants Overwhelmed + Vulnerable
Controlled + Vulnerable
Feelings:
Feelings:
Continual and/or high levels of distress.
High anxiety about losing control or expressing strong feelings.
Thoughts: Preoccupied with the loss. Views self as a victim of circumstances. Behaviours: Confused, unpredictable.
Thoughts: Has difficulty in accepting reality. The desire for bravery may not be sufficient to effectively control emotions. Behaviours:
Life perspective: Generally negative outlook.
Finds it hard to cry. Temper or irritation under pressure.
Social support:
Life perspective:
Perceives support as lacking or makes poor use of it.
Believes in being strong but struggles to maintain this. Social support: Reluctant to make use of support or disclose personal needs.
Overwhelmed + Resilient
Controlled + Resilient
Feelings:
Feelings:
Experiences feelings but not continually dominant.
Not visible or discussed.
Thoughts: Able to understand and acknowledge impact of loss. Behaviours:
Thinks clearly regarding strategies to manage loss. Behaviours: Functions practically and effectively.
Generally functions well.
Life perspective:
Life perspective:
Believes in importance of being strong.
Has hope for the future even when currently distressed. Social support:
Thoughts:
Social support: Makes few demands on social support.
Uses available support well. GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
17
Assessing need In order to assess need using the RRL approach it is necessary not only to observe family reactions but also 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 on observation alone. In Table 4 we see examples of typical statements for each type of response to loss. In addition to statements like the examples found in Table 4, 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 al49 describe ‘narrative’ as having three elements: 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
Table 4 – Typical statements indicating type of response to loss (based on the Adult Attitude to Grief scale35) Response
Type of statement
Overwhelmed
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 seems pointless.
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.
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.
Vulnerable
I can’t face the (emotional and physical) pain in this situation. I feel I have no strength to cope with all that is happening. Everything, even the future, looks bleak.
18
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
pre-bereavement family support. In Table 5 we see examples of narratives indicating coping responses to loss. The key areas to explore are as follows: n What is this person coping with (in relation to both the illness of the family member/friend and in the wider context of home, family, work, etc)? n What resources do they have? n How are they coping? Do they seem swamped in the current situation, or do they show a capacity to manage effectively?
Sensitive questions to open up these areas for discussion are unlikely to be intrusive and are usually seen as helpful. Examples include: n Tell me about...? (External narrative) n How are you reacting to...? (Internal narrative) n How are you managing to deal with...? (Reflexive narrative) Appendix 5 (see page 34) provides a case study that considers both traditional risk factors and coping responses to illustrate how understanding responses to loss can enhance the assessment process. Appendix 6 (see page 36) provides a completed matrix in relation to this case study.
Table 5 – Examples of narrative indicators of responses to loss Narrative process
Range of responses to loss Overwhelmed
Resilient
Controlled
External narrative
Story of the illness and treatment is told in detail. Emphasis on the awfulness of the experience.
Story of illness and treatment has coherance. Attention given to positive and negative aspects of experience.
Story of the illness and treatment told with minimal detail. Emphasis on fact.
Internal narrative
The engulfing nature of sadness and anger about the illness is described. The speaker may assume the role of victim.
The pain of impending loss is countered by a positive sense of personal resourcefulness.
Strong desire to have control. ‘Bravery’ dominates. Accounts of painful emotions minimised.
Reflexive narrative
There is a lack of hopefulness about the situation and difficulty in finding a sense of meaning within it. Personal identity may be defined in terms of the role as carer.
Sense of optimism in spite of the sadness and a capacity to find meaning. Awareness of the strength that might come from experiencing loss.
Desire to divert from the painful elements of the illness and treatment and a need to demonstrate strength and stoicism in meeting adversity.
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
19
4. Organisational issues in implementing assessment
This section addresses ‘how to’ implement the Bereavement Needs Assessment (BNA) approach in practice and considers the organisational, educational and practice issues involved in assessment. Given the diverse nature of bereavement services within palliative care29, each organisation will vary in the process of assessment and the practicalities of service delivery. Therefore, it is not possible to give definitive guidance. In considering solutions to the challenges involved in a systematic approach to assessment, we draw on the recently published report of the action research study describing the implementation of the BNA approach in three hospices7. The quality of bereavement assessment will reflect organisational commitment to family care before and after bereavement and the resources available to facilitate practice. Key findings from the action research study7 indicate that introducing assessment requires: n consensus and agreement among senior staff that assessment is part of core practice n support of senior staff for the implementation of a new approach to assessment n agreement among practitioners called upon to implement the assessment procedures that a new assessment approach is necessary and appropriate n effective leadership in promoting the new approach, facilitating the necessary change in administrative protocols and ethically progressing new practice procedures.
Organisational components of assessment The main organisational components of assessment include:
n managerial commitment n leadership and coordination to develop systems and maintain routine assessment practice n administrative support to monitor referrals and record service uptake n knowledge of local service provision. Education and training are essential components of any method of assessment. They should aim to develop knowledge about risk, vulnerability and resilience, and assessment skills. Relationship building and communication skills are also 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 assessment28. Agreement from, and support of, senior management is also essential if systematic assessment is to become part of core practice across clinical teams and palliative care settings. Once an organisation has commitment at a senior level, effective project leadership is required to implement the new approach. This involves facilitating inter-professional discussions and consultations to ethically progress new practice procedures, agreeing a realistic protocol for assessment and developing appropriate administrative processes to support and enable assessment to become part of routine practice. It is also important to maintain records to monitor the proportion of people being assessed as vulnerable and their subsequent use of bereavement services. Good knowledge of local services is also important to facilitate access to appropriate help (such as specialist mental health services and welfare rights and benefits).
n education and training to develop knowledge and assessment skills
20
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
Table 6 – Assessment implementation organisational pathway Preparation In preparation for introducing assessment organisations need to: n explore their awareness of the need to change and their motivation and commitment to take this forward n adopt a family focused approach to care before and after bereavement n obtain agreement and the support of senior staff within the organisation. Initiation During the initiation phase it is essential that there is: n consultation and multiprofessional discussion to agree the practice changes necessary to ensure ethical practice n consultation and discussion regarding the development of administrative processes to support the routine assessment in practice n an induction and training programme to develop the knowledge and skills of all practitioners who are involved in assessment n leadership and coordination to facilitate and support the process of change. Implementation In the implementation phase the following are important: n shared ownership of the new approach to practice n practitioners who are confident in their ability to take the new approach to assessment into their practice n ongoing reviews and audit to consolidate or revise the practice procedures n administrative support to monitor referrals and record service uptake. An organisational pathway for implementing assessment Table 6 outlines the different phases that organisations need to complete to implement the BNA approach to assessment7. The challenge is not only to put new procedures and protocols in place but for practitioners to adopt and integrate new ways of thinking into their practice.
Staff induction and training Staff need to have the necessary knowledge, skills and attitude to enable them to engage in assessing people’s needs in relation to bereavement. This includes: n assessment skills including observation and the ability to engage people in conversations about how they are dealing with their situation
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
21
n understanding the theoretical principles underpinning the approach to assessment recommended in this publication n recognition of the variable ways in which patients and their families cope with the losses they experience, risk, vulnerability and resilience50 n understanding and ownership of the administrative processes that have been developed in relation to assessment. The training process should also provide an opportunity for reflective thinking about practitioners’ own subjective attitudes to grief and distress. This heightened self-awareness contributes to greater effectiveness and sensitivity in practice. Appendix 7 (see page 37) shows the common themes in the training programmes developed by the three hospices involved in implementing the BNA approach7. Who should be assessed? Although the National Institute for Health and Clinical Excellence15 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. We recommend that a realistic protocol for assessment should be created. Given the problems associated with assessment described earlier, it is important that any protocol addresses 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 or ethical if there have not been opportunities for discussion with family members. It is dangerous and unethical to
22
make judgements based on assumptions alone. In these situations the organisational protocol may advocate that families are contacted after bereavement to assess need; others may prefer to promote a process of self referral where assessment has not been possible. Written information about how to access support should always be provided whether or not assessment has been undertaken. Ethical issues Although 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. It is important to convey to them that palliative care involves assessing their need for support, including after bereavement. Preferably this should be done at the first contact or as early as possible. One way to address ethical concerns is to make sure that all patient and family information explains the process of assessment and enables people to opt out of the process. Appendix 8 (see page 38) gives an example of an information leaflet developed by one of the three hospices involved in the action research study7. 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 obviously arise if an organisation does not see the family as the focus of care or if it intends 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
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
explicit consent before information is given to a separate organisation and this should be reflected in the organisational protocol. 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. Ensuring equitable access to services While assessment aims to improve access to support or counselling for people 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 family members may have been less visible to staff during the patient’s illness. Therefore, it is important to make sure that information is readily available early in bereavement. This should help people understand and normalise their grief reactions as well as provide details of how to access bereavement services for help and support15.
Practitioners as assessors What is involved in making an assessment? There are several phases to assessing the need for bereavement care: n Gathering information throughout the patient’s illness through observation and discussions 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.
n 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. Evidence suggests that assessment protocols that involve multiprofessional discussions of coping styles are an important aspect of implementing the BNA approach7. n Documenting assessment using an assessment form. The process of bereavement needs assessment inevitably begins before the patient’s death as part of family assessment. The RRL matrix can be used before bereavement but should always be completed as soon as feasible after the patient’s death (if an assessment is possible). n Making decisions about the type and level of follow-up to be offered. n Administering the process to make sure that all families are included. n Proactively offering services to those considered to be vulnerable and documenting the use of support. n Giving written information about grief and how to access support to all bereaved families including those not considered to be vulnerable. Creating an assessment form In recognition of the diversity in palliative care bereavement services, this publication does not provide an example of an assessment form. Each service will want to create a form geared to the organisation within which it is located. This documentation could include: n patient information, eg name, address and date of death
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
23
n details about 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 n a genogram n contact details for key family members n staff comments in relation to the circumstances of the death, eg how distressing the death was for family members n the RRL matrix (one for each person assessed) n documentation relating to decisions regarding follow up n 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.
24
Consequences for care The RRL matrix is not designed to be a predictive measure but a means of aiding thinking about the way in which people cope in the face of loss. The approach to assessment recommended in this publication proposes that documenting evidence of vulnerability and resilience can provide important guidance for bereavement services. It is useful to consider the matrix to be a method that helps to provide ‘indicators of coping’ rather than as a definitive ‘assessment tool’. This helps to clarify that assessment is a process in which even limited observations can make a contribution to the wider knowledge about families. Figure 4 gives an overview of the processes involved in bereavement needs assessment. It demonstrates the link between the care provided by staff before and around the time of the patient’s death and the interventions offered by the bereavement team as a result of the information given in the completed matrix. It is essential that staff who are involved in undertaking assessments have an understanding of this process and the importance of assessment to the work of the bereavement service. Understanding this process can help facilitate a greater integration of bereavement services within palliative care.
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
Figure 4 – The process of bereavement needs assessment Multiprofessional team members talk to family members about how they are coping pre bereavement
Ongoing discussion/assessment to consider the need for support pre bereavement – these discussions may be documented using the matrix if desired
Documentation of assessment using the matrix as soon as feasible after the patient’s death
Multiprofessional team discussion of the assessment considering resilience as well as vulnerability
Bereavement support offered at the level indicated by the assessment
Intervention and ongoing assessment of the bereaved person’s needs
Monitoring of the use of the bereavement service
Evaluation of service provision
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
25
Summary
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 persistent feelings of being overwhelmed, 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, further research is needed to test this new approach to assessment in practice.
26
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
References
1. Payne M. A review of ‘Guidance for bereavement needs assessment in palliative care’. Bereavement Care 2008; 27(3): 60. 2. Relf M, Machin L, Archer N. Payne M. Responses to the review of ‘Guidance for bereavement needs assessment in palliative care’. Bereavement Care 2009; 28(1): 46-49. 3. Larson DG, Hoyt WT. Grief counselling efficacy: what have we learned? Bereavement Care 2009; 28(3): 14-19. 4. Hoyt WT, Larson DG. What have we learned from research on grief counselling? A response to Schut and Neimeyer. Bereavement Care 2010; 29(1): 10-13. 5. Neimeyer RA. Grief counselling and therapy: the case for hope. Bereavement Care 2010; 29(2): 1316. 6. Schut H. Grief counselling efficacy: have we learned enough? Bereavement Care 2010; 29(1): 8-9. 7. Machin L. A study into implementing the Guidance for bereavement needs assessment in palliative care – Report 2010. London: Help the Hospices, 2010. 8. Stroebe M. From vulnerability to resilience: where should research priorities lie? Bereavement Care 2009; 28(2): 18-24. 9. Machin L. Working with loss and grief: a new model for practitioners. London: Sage, 2009. 10. Department of Health. When a patient dies: advice on developing bereavement services in the NHS. London: Department of Health, 2005. 11. Department of Health, Social Services and Public Safety. Northern Ireland Health and Social Care Services strategy for bereavement care. Belfast: Department of Health, Social Services and Public Safety, 2009. 12. Department of Health. End of life care strategy: promoting high quality care for all adults at the end of life. London: Department of Health, 2008. 13. Parkes CM, Bereavement. In: Doyle D, Hanks G, Macdonald N (editors). Oxford textbook of palliative medicine. Oxford: Oxford University Press, 1993. p665-678. 14. Davies E, Higginson I (editors). Better palliative care for older people. Copenhagen: World Health Organization, 2004. 15. National Institute for Clinical Excellence. Improving supportive and palliative care for adults with cancer. London: National Institute for Clinical Excellence, 2004. 16. Stroebe M, Hansson R, Stroebe W, Schut H. Handbook of bereavement research: consequences, coping and care. Washington DC: American Psychological Association, 2001. 17. Parkes CM. Love and loss: the roots of grief and its complications. London: Routledge, 2006.
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
27
18. Aranda S, Milne D. Guidelines for the assessment of complicated bereavement risk in family members of people receiving palliative care. Melbourne: Melbourne Centre for Palliative Care, 2000. 19. Stroebe W, Schut H, Risk factors in bereavement outcome: a methodological and empirical review. In: Stroebe M, Hansson R, Stroebe W, Schut H (editors). Handbook of bereavement research: consequences, coping and care. Washington DC: American Psychological Association, 2001. p349371. 20. Relf M, Risk assessment and bereavement services. In: Payne S, Seymour J, Skilbeck J, Ingleton C. Palliative care nursing: principles and evidence for practice. Buckingham: Open University Press, 2004. p521-554. 21. Parkes CM. Risk factors in bereavement: implications for the prevention and treatment of pathologic grief. Psychiatric Annals 1990; 20: 308-313. 22. Parkes CM. Bereavement counselling: does it work? British Medical Journal 1980; 281(6232): 3-6. 23. Schut H, Stroebe M. Interventions to enhance adaptation to bereavement. Journal of Palliative Medicine 2005; 8: S-140-146. 24. Currier JM, Neimeyer RA, Berman JS. The effectiveness of psychotherapeutic interventions for the bereaved: a comprehensive quantitative review. Psychological Bulletin 2008; 134(5): 648-661. 25. Neimeyer RA. Grief counselling and therapy: the case for humility. Bereavement Care 2010; 29(1): 4-7. 26. Prigerson HG, Horowitz MJ, Jacobs SC, Parkes CM, Aslan M, Goodkin K, et al. Prolonged grief disorder: psychometric validation of criteria proposed for DSM-V and ICD-11. PLoS Medicine 2009; 6(8): e1000121. 27. Stroebe M, Hansson R, Stroebe W, Contemporary themes and controversies in bereavement research. In: Stroebe M, Stroebe W, Hansson R (editors). Handbook of bereavement: theory, research and intervention. Cambridge: Cambridge University Press, 1993. p457-475. 28. Kissane D, Bloch S. Family focused grief therapy. Buckingham: Open University Press, 2002. 29. Field D, Reid D, Payne S, Relf M. Survey of UK hospice and specialist palliative care adult bereavement services. International Journal of Palliative Nursing 2004; 10(12): 569-576. 30. Payne S, Relf M. Survey of bereavement needs assessment and support services. Palliative Medicine 1994; 8: 291-297. 31. Beckwith B, Beckwith S, Gray T, Micsko M, Holm J, Plummer V, Flaa S. Identification of spouses at high risk during bereavement: a preliminary assessment of Parkes and Weiss’ risk index. Hospice Journal 1990; 6(3): 35-46. 32. Levy L, Derby J, Martinowski K. The question of who participates in bereavement research and the bereavement risk index. Omega: Journal of Death and Dying 1992; 25(3): 225-238.
28
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
33. Agnew A, Manktelow R, 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. 34. Stroebe M, Folkman S, Hansson R, Schut H. The prediction of bereavement outcome: development of an integrative risk factor framework. Social Science and Medicine 2006; 63(9): 2440-2451. 35. Machin L. Exploring a framework for understanding the range of response to loss; a study of clients receiving bereavement counselling [PhD thesis]. Keele: Keele University, 2001. 36. Stroebe M, Schut H. The dual process model of coping with bereavement: rationale and description. Death Studies 1999; 23(3): 197-224. 37. Machin L, Spall R. Mapping grief: a study in practice using a quantitative and qualitative approach to exploring and addressing the range of response to loss. Counselling and Psychotherapy Research 2004; 4(1): 9-17. 38. Machin L. The Adult Attitude to Grief Scale as a tool of practice for counsellors working with bereaved people [Study report]. Keele: Keele University, 2007. 39. Ainsworth M, Blehar M, Waters E, Wall S. Patterns of attachment: a psychological study of the strange situation. Hillsdale, NJ: Lawrence Erlbaum Associates, 1978. 40. Horowitz M. Stress response syndromes. Northvale, NJ: Aronson, 1976/1986. 41. Martin T, Doka K. Men don’t cry...women do: transcending gender stereotypes of grief. Philadelphia: Brunner/Mazel, 2000. 42. Machin L, Resilience and bereavement. In: Monroe B, Oliviere D (editors). Resilience in palliative care: achievement in adversity. Oxford: Oxford University Press, 2007. p157-165. 43. Kellehear A, Young B, Resilient communities. In: Monroe B, Oliviere D (editors). Resilience in palliative care: achievement in adversity. Oxford: Oxford University Press, 2007. p223-238. 44. Walter T. On bereavement: the culture of grief. Milton Keynes: Open University Press, 1999. 45. Rosenblatt P, Social constructionist perspective on cultural difference in grief. In: Stroebe M, Hansson R, Stroebe W, Schut H (editors). Handbook of bereavement research: consequences, coping and care. Washington DC: American Psychological Association, 2001. p285-300. 46. Greene R. Holocaust survivors: a study in resilience. Journal of Gerontological Social Work 2002; 37(1): 3-18. 47. Zaider T, Kissane D, Resilient families. In: Monroe B, Oliviere D (editors). Resilience in palliative care: achievement in adversity. Oxford: Oxford University Press, 2007. p67-81. 48. Doka K. Disenfranchised grief. Champaign Ill: Research Press, 2002. 49. Angus L, Levitt H, Hardtke K. The narrative processes coding system: research applications and implications for psychotherapy practice. Journal of Clinical Psychology 1999; 55(10): 1255-1270. 50. Machin L. Loss responses at the end of life: a conceptual reflection. End of Life Care 2010; 4(1): 46-52. GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
29
Appendix 1 – Original Range of Response to Loss matrix Matrix showing the Range of Response to Loss intersected by the spectrum of vulnerability and resilience. Overwhelmed + Vulnerable Feelings: Continual and/or high levels of distress. Thoughts: Preoccupied with the loss. Views self as victim of circumstances. Behaviours: Confused, unpredictable. Life perspective: Generally negative outlook. Social support: Perceives social support as lacking or makes poor use of it.
Overwhelmed Powerful emotions are central to the experience of grief. Whether the distress is relatively temporary or is more persistent will be influenced by personal and circumstantial factors. Overwhelmed + Resilient Feelings: Experiences feelings but not continually dominant. Thoughts: Able to understand and acknowledge the impact of loss. Behaviours: Generally functions well. Life perspective: Has hope for the future even when currently distressed. Social support: Uses available support well.
30
Vulnerability Personal capacity reduced, for example, by physical or psychological problems, difficulty in dealing with past stresses.
Circumstantial risk is heightened by concurrent factors, eg difficult death, caring for children, elderly parents, relationship/financial/ housing problems.
Vulnerability O/V
C/V
O C Core dimensions of grief O/R
C/R
Resilience Resilience Personal capacity Inner resources are adequate to meet the demands of the loss, eg positive past experience, confidence, hopeful outlook.
Controlled + Vulnerable Feelings: High level of 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 The desire to (re)establish control is a natural reaction to loss. The capacity to manage the powerlessness of loss and exert control in some aspects of life will be influenced by personal and circumstantial factors. Controlled + Resilient Feelings: Not visible. Thoughts: Thinks clearly regarding strategies to manage loss. Behaviours: Functions practically and effectively.
Circumstantial factors are positive, Life perspective: eg events surrounding death, Believes in the importance support available, additional of being strong. demands manageable. Social support: Makes few demands on social support.
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
Appendix 2 – Revised Range of Response to Loss matrix – 1 (recommended version) Factors contributing to ‘vulnerability’ (Circle as applicable) Personal capacity limited by past or present physical or psychological problems; difficulty in dealing with stress. Circumstantial risk is heightened by, for example, the patient’s illness/death being difficult, concurrent caring demands (children, sick relative, elderly parents), relationship/financial/housing problems, etc. Social factors: socially isolated; perceives support as lacking or makes poor use of it. Overwhelmed + Vulnerable Vulnerability Controlled + Vulnerable Strong emotions are uppermost 1. Struggle to manage distressed A fear of loss of control makes and make day-to-day feelings and the pull to stay clear thinking and acting difficult living difficult. in control. when dealing with day-to-day 2. Unable to make sense of this life. experience of loss. Always Always Always Most of the time Most of the time Most of the time Sometimes Sometimes Sometimes Never Never Never NK NK NK Comments
Vulnerability O/V
Comments C/V
O C Core dimensions of grief O/R Overwhelmed + Resilient Able to face and accept feelings even when grief is still powerfully present.
C/R
Resilience Resilience Controlled + Resilient Personal capacity Able to think and act clearly and 1. Able to accept what cannot manage life demands effectively. be changed and able to act in areas where change is possible. 2. Can make sense of this experience of loss.
Always Always Always Most of the time Most of the time Most of the time Sometimes Sometimes Sometimes Never Never Never NK NK NK Factors contributing to ‘resilience’ (Circle as applicable) Personal capacity: inner resources are adequate to meet the demands of the loss, eg positive past experience, positive self esteem, hopeful outlook. Circumstantial factors are positive, eg uncomplicated events surrounding illness/death, other life demands are manageable, etc. Social factors: socially integrated; support felt to be adequate to needs. NB. The personal, circumstantial and social factors identified as contributing to vulnerability and resilience are not absolute determinants of those states. They should be understood within the wider grief responses and coping mechanisms shown in the matrix.
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
31
Appendix 3 – Revised Range of Response to Loss matrix – 2 Use the spectrum line to record the level of vulnerability/resilience you observe in your client. Overwhelmed + Vulnerable
Overwhelmed + Resilient
Strong emotions are uppermost and make day-to-day living difficult. Comments
Able to face and accept feelings even when grief is still powerfully present.
Controlled + Vulnerable
Controlled + Resilient
A fear of loss of control makes clear thinking and acting difficult when dealing with day-to-day life. Comments
Able to think and act clearly and manage life demands effectively.
Struggle
Able
To make sense of the loss. Comments
To make sense of the loss.
Difficult personal + circumstantial factors
Positive personal + circumstantial factors
For example, physical or mental health problems, caring demands, financial/ housing problems, etc. Comments
For example, positive past experience, hopeful outlook, support available, no excessive other demands, etc.
Difficult social factors
Positive social factors
Isolated; perceives support as lacking or makes poor use of it. Comments
Socially integrated; support felt to be adequate for needs.
32
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
Appendix 4 – Revised Range of Response to Loss matrix – 3
Dimension of grief Overwhelmed + Vulnerable Strong emotions are uppermost and make day-to-day living difficult.
Frequency (tick)
Comments
Always Most of the time Sometimes Never NK
Controlled + Vulnerable A fear of loss of control makes clear thinking and acting difficult when dealing with dayto-day life.
Always Most of the time Sometimes Never NK
1. Struggle to manage distressed feelings and the pull to stay in control. 2. Unable to make sense of this experience of loss.
Always Most of the time Sometimes Never NK
Difficult personal + circumstantial factors: Eg physical or mental health problems, caring demands, financial/ housing problems, etc.
Always Most of the time Sometimes Never NK
Difficult social factors: Isolated; perceives support as lacking or makes poor use of it.
Always Most of the time Sometimes Never NK
Overwhelmed + Resilient Able to face and accept feelings even when grief is still powerfully present.
Always Most of the time Sometimes Never NK
Always Controlled + Resilient Able to think and act clearly and manage life Most of the time Sometimes demands effectively. Never NK
1. Able to accept what cannot be changed and able to act in areas where change is possible. 2. Can make sense of this experience of loss. Positive personal + circumstantial factors: Eg positive past experience, hopeful outlook, support available, no excessive other demands, etc.
Always Most of the time Sometimes Never NK
Positive social factors: Socially integrated; support felt to be adequate for needs.
Always Most of the time Sometimes Never NK
Always Most of the time Sometimes Never NK
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
33
Appendix 5 – Case study: Sandra
Risk factors 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?
n 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. n Meaning of the relationship – Sandra depended on Jill for both emotional and practical support. However, she became 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. n Social support – Sandra has a close, warm relationship with her sister. Her ex-partner is unsupportive, unpredictable and the relationship is “messy”. n 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. n 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 n Sandra can express her sadness and her feelings of distress. n She can share her feelings with her sister. n She can control her emotions to fulfil the demands of being a mother and a carer. n She is resourceful and able to manage being a working mum. n She feels strong and hopeful about her future.
34
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
Assessment process n Multiprofessional team discussions with family/carers pre bereavement – The assessment process began following Jill’s initial referral to the hospice. Sandra and Jill were both aware of the hospice’s inclusive approach to care delivery, including the ongoing assessment of family needs. n Ongoing process of discussion and assessment to consider the need for support pre bereavement – The staff used the RRL model to understand Sandra’s coping style, based on their conversations with her throughout her mum’s illness. They did not complete a matrix pre bereavement but used the RRL concepts as a framework for their multiprofessional team discussions. n Documentation of assessment using the matrix as soon as feasible after the patient’s death – Jill’s key worker was responsible for completing an assessment matrix for Sandra. Completion of the form was based on the team’s observations and discussions with Sandra during Jill’s illness.
n Multiprofessional team discussion of the assessment considering resilience as well as vulnerability – Sandra’s matrix was discussed at the team meeting the week after Jill’s death. Although Sandra was both facing bereavement and dealing with the ending of a difficult relationship without the support of her mother, the team agreed that her internal and external resources would help her to cope and that she appeared to be resilient. n Bereavement support offered at level indicated by the assessment – Based on the team’s discussions, the bereavement service did not offer Sandra one-to-one support. Shortly after her mother’s death Sandra had been given both written and verbal information about the hospice bereavement service, so she was aware that she could approach the service herself should she need support. Sandra had also received written information about other local services and about typical grief reactions. In Appendix 6 (see page 36), we use this case study to provide an example of the use of the RRL matrix.
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
35
Appendix 6 – Case study example of the use of the Range of Response to Loss matrix: Sandra Client name: Patient name:
Sandra Jill
Date: Patient no:
Factors contributing to ‘vulnerability’ (Circle as applicable) Personal capacity limited by past or present physical or psychological problems; difficulty in dealing with stress. Had a dependant relationship on mum. Circumstantial risk is heightened by, for example, the patient’s illness/death being difficult, concurrent caring demands (children, sick relative, elderly parents), relationship/financial/housing problems, etc. Social factors: socially isolated; perceives support as lacking or makes poor use of it. Overwhelmed + Vulnerable Strong emotions are uppermost and make day-to-day living difficult.
Vulnerability 1. Struggle to manage distressed feelings and the pull to stay in control. 2. Unable to make sense of this experience of loss.
Controlled + Vulnerable A fear of loss of control makes clear thinking and acting difficult when dealing with day-to-day life.
Always Most of the time Sometimes Never NK
Always Most of the time Sometimes Never NK Vulnerability
Always Most of the time Sometimes Never NK
Comments Experiences lots of powerful emotions but is mainly accepting of this.
Comments C/V
O/V
O C Core dimensions of grief O/R
C/R Resilience
Overwhelmed + Resilient Able to face and accept feelings even when grief is still powerfully present.
Resilience Controlled + Resilient Able to think and act clearly and Personal capacity 1. Able to accept what cannot manage life demands effectively. be changed and able to act in areas where change is possible. 2. Can make sense of this experience of loss.
Always Always Always Most of the time Most of the time Most of the time Sometimes Sometimes Sometimes Never Never Never NK NK NK Factors contributing to ‘resilience’ (Circle as applicable) Personal capacity: inner resources are adequate to meet the demands of the loss, eg positive past experience, positive self esteem, hopeful outlook. Feels hopeful and strong positive relationship with mum. Circumstantial factors are positive, eg uncomplicated events surrounding illness/death, other life demands are manageable, etc. Social factors: socially integrated; support felt to be adequate to needs. Has support from sister. NB. The personal, circumstantial and social factors identified as contributing to vulnerability and resilience are not absolute determinants of those states. They should be understood within the wider grief responses and coping mechanisms shown in the matrix.
Appendix 7 – Common themes in the training programmes developed by St Giles Hospice, Highland Hospice and St Nicholas Hospice Care7
1. Perspectives on assessment Content: n Consideration given to existing methods of assessment – their effectiveness (or not), etc. n The purpose of assessment – when, by whom, for what, etc. n The nature of holistic care and the ethics of recording information about people other than the patient. Methods – This part of the training programme provided a background to introducing the new approach to bereavement needs assessment. Informal methods were used such as discussion or focus groups.
2. Introduction of new concepts Content: n From traditional focus on risk factors to coping styles. n The RRL model: – Core dimensions of grief – being overwhelmed by feelings and strongly desiring to be back in control.
n Introduction of the RRL matrix as a tool for identifying and recording grief responses and coping mechanisms. Methods – Teaching using a PowerPoint presentation and participant discussion.
3. Implications for practice Content: n Case studies to provide practice in identifying grief responses and coping capacity using the matrix. n Developing skills in observing and engaging with family members to gain information about their coping capacity. Understanding the varied ways in which people think about their experiences (positively/negatively, optimistically/pessimistically, etc) and using practitioner prompts to gain information, eg “Tell me about…, “What is the impact of…on you?”, “How are you dealing with…?”, etc. n Administrative protocols and procedures for using the matrix. Methods – Experiential exploration, learning and discussion.
– Coping factors that demonstrate resilience or vulnerability.
4. Ongoing training regarding theory and practice issues
– How personal, circumstantial and social factors variably contribute to the resourcefulness, or otherwise, of people coping with loss and contribute to resilience or vulnerability.
Content: n Update thinking and provide an opportunity to reflect on practice experience.
n Exploration of the characteristics and qualities of the different grief reactions proposed in the RRL model. The types of statements people use to describe their situation and how these indicate their preferred coping style, eg “I’ll never get over this awful experience”, “I think you just have to be brave”, etc.
n Introduce new members of staff to assessment using the RRL matrix. n Reflecting on ethical and practical concerns. Methods – Experiential and didactic teaching and discussion.
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
37
Appendix 8 – Example of an information leaflet explaining family care (Highland Hospice)
Patient/carer Information Caring for the whole family Palliative care focuses on the person, not the disease, and applies a holistic approach to meeting the physical, practical, functional, social, emotional and spiritual needs of patients and carers facing progressive illness and bereavement (Living and Dying Well, 2008). The scope of care at Highland Hospice is concerned for the wellbeing of carers, whether family or friends, as well as for patients and, through informal discussion and more formal appraisal of carer needs, we will offer support which is mutually felt to be appropriate and acceptable. A new form of assessment Highland Hospice is one of three hospices working collaboratively with Help the Hospices, the national umbrella organisation for hospice care, to pilot a new approach to assessing the likely need for ongoing support among families and friends whose loved one is currently receiving palliative care. This approach looks at the inevitable tension between feeling overwhelmed by circumstances and trying hard to retain some control in this stressful life situation. At times, the confusion of thoughts and feelings and the practical day-to-day demands can make us feel vulnerable. At other times we can feel upheld and strong in the face of the many consequences of caring. We want to support you by finding the way that is best for you as an individual to achieve a balance in managing these competing pressures of caring, dealing with distress and coping with ongoing life. The pilot process As you will be meeting with a range of staff, all of whom will contribute to your support, some records will be kept to help us give you consistent and appropriate care. We hope that the learning from this new approach will improve the care we offer to you, and your experience will contribute to our learning about how best to help other people. However, should you not wish to be involved in this piloting process, or at some point decide to withdraw from it, please do let us know. Be reassured, however, this would in no way affect the support we will offer to you, now or at any point in the future. If you would like more information, or to ask questions about this aspect of our care, please feel free to approach... (named hospice staff member).
38
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
Action research study report
This second edition of ‘Guidance for bereavement needs assessment in palliative care’ was prompted by the findings of the action research study into the implementation of the Bereavement Needs Assessment approach in three hospices. Order the report of the study’s findings at
[email protected] or download it from our online catalogue at www.helpthehospices.org.uk/publications
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
39
Feedback
Get in touch We are committed to producing publications that are of the highest quality and give hospice and palliative care professionals the support they need. Please help us to maintain our high standards by providing feedback on this guidance. If you have any comments or suggestions, please get in touch by emailing
[email protected] or calling 020 7520 8200.
Other publications From guidance on helping patients to travel overseas to advice on setting up a service for carers, we produce a wide range of publications and resources to support hospice and palliative care professionals with the care they give. Find out how we can support you further: www.helpthehospices.org.uk/publications
40
GUIDANCE FOR BEREAVEMENT NEEDS ASSESSMENT IN PALLIATIVE CARE
About Help the Hospices
Help the Hospices is the leading charity supporting hospice care throughout the UK. We want the very best care for everyone facing the end of life. Our services are here to support hospice people and champion the voice of hospice care. They include: n a wide range of training and education programmes n informative and practical resources for hospice staff n work to influence government policy n support for quality care and good practice n fundraising programmes and campaigns that raise funds directly for our member hospices. We also have an international programme, which supports the development of hospice and palliative care worldwide, particularly in developing countries. We work with our partners to provide a global voice on international hospice and palliative care issues and offer resources to develop the capacity of hospice and palliative care services at national and local levels. Find out more at www.helpthehospices.org.uk
Our strategic priorities Striving for the best care for all We work with and through our members to make sure that hospice and palliative care is there for everyone who needs it. Supporting hospice people We help the staff, volunteers and trustees who care for patients, their relatives and friends. Championing the voice We are a strong and influential voice for our members to governments, the NHS and regulating bodies. Growing stronger together We work with our members to build their capacity and shape our work – and with other organisations when this helps to improve care. Telling the world We tell people what hospice and palliative care is really about, and we give a voice to dying people. Strengthening our charity We make Help the Hospices an even more successful organisation that people are proud to work for and with.
We want the very best care for everyone facing the end of life. We believe hospice care can help make this happen. Our six strategic priorities: n Striving for the best care for all n Supporting hospice people n Championing the voice n Growing stronger together n Telling the world n Strengthening our charity Help the Hospices Hospice House 34-44 Britannia Street London WC1X 9JG Tel 020 7520 8200 Fac 020 7278 1021 www.helpthehospices.org.uk Company limited by guarantee. Registered in England & Wales No 2751549. Registered Charity in England and Wales No 1014851 and Scotland No SC041112. VAT No 731 304476. Registered office as above.