2. Babies, Children and Young People’s Palliative Care
Caroline Porter Diana Children’s Nurse - West of Scotland

3. Domain 3
Loss Grief and Bereavement

4. NHS Education for Scotland
Palliative and End of life Care
A framework to support the learning and development needs of the health and social services workforce in Scotland
Use in your own PDP’s
Map your own knowledge and skills
Tool to map current workforce provision

8. ‘The constant absence of presence’ Bereaved Father
What is bereavement?
‘The constant absence of presence’
Bereaved Father
Speakers Notes:
It is an unfortunate reality that bereavement and grief do not focus highly in the training of health care professionals, resulting in a lack of evidence-based wisdom in the approach to understanding and responding to this universal human experience.
The terms bereavement and grief are not used consistently in literature. They refer to either a state of having lost someone to death, or the response to such a loss.
For clarity – the term bereavement should be used to refer to that fact of the loss someone has experience.
References:
Zisook, S. and Shear, K., Grief and bereavement: what psychiatrists need to know. World Psychiatry, 8(2), pp

9. How does loss effect families and carers?
The loss of a child generates the most traumatic and profound grief
Everyone’s journey is unique
Impacts on relationships and societal functioning
Deleterious impacts on martial relations
Occupational/Financial hardship
Loss of role +/- purpose
Circumstances of death
Speaker Notes:
Society and individuals are less accepting of death in children and young people, likely due to the simple fact that, in Western society, adults expect to die before children. It is therefore unsurprising that the death of a child has a profound and lasting effect on the surrounding community. Families/carers are often the most deeply effected by such loss. Psychologist have almost unanimously asserted that the loss of a child generates the most traumatic and profound grief.
As professionals it is critical to recognise that although the death of child may will generate universal grief, the expression and experience of this grief is likely to be different for each of the individuals involved. Everyone’s journey is unique. A parent’s premorbid personality and/or the presence of pre-existing psychiatric diagnoses can effect loss.
It can be extremely difficult for families to accept, let alone understand, their own differences in grief expression, leading to misunderstandings and breakdowns in communication. As a result, bereavement can adversely impact interpersonal relationships and societal functioning, leading to negative feedback cycles that compound feelings of isolation and anguish. A mothers loss of her child may be different to that of a father. Employment can be impacted, with increased risk of occupational or financial hardship.
Parents and carers may experience a loss of role and/or purpose following the death of a child. Non-traditional families can face additional pressures – gay families may feel excluded from faith groups; foster parents may feel a lack of recognition as parents. Families may have also lost their ‘pre-morbid’ support network which has been replaced by hospital staff – again the loss of this support can have significant impacts on families and carers.
Professionals should also be aware that the circumstances surrounding death significantly impact families and carers. Sudden/unexpected deaths vs those that were foreseeable following a long illness – both groups of parents/carers will experience grief but their expression of this is likely to vary significantly.
References:
Lannen, P.K., Wolfe, J., Prigerson, H.G., Onelov, E. and Kreicbergs, U.C., Unresolved grief in a national sample of bereaved parents: impaired mental and physical health 4 to 9 years later. Journal of Clinical Oncology, 26(36), pp
Hendrickson, K.C., Morbidity, mortality, and parental grief: a review of the literature on the relationship between the death of a child and the subsequent health of parents. Palliative and supportive Care, 7(01), pp
Price, J.E. and Jones, A.M., Living through the life-altering loss of a child: a narrative review. Issues in comprehensive pediatric nursing, 38(3), pp
Goodenough, B., Drew, D., Higgins, S. and Trethewie, S., Bereavement outcomes for parents who lose a child to cancer: are place of death and sex of parent associated with differences in psychological functioning?. Psycho‐Oncology, 13(11), pp
Snaman, J.M., Kaye, E.C., Levine, D.R., Cochran, B., Wilcox, R., Sparrow, C.K., Noyes, N., Clark, L., Avery, W. and Baker, J.N., Empowering bereaved parents through the development of a comprehensive bereavement program. Journal of Pain and Symptom Management.
Picture:
Ron Mueck, Spooning Couple – the broken bonds in relationships, 2015 – Tate Modern Exhibition.

10. Supporting families before death
Families require support throughout a child’s illness journey
’Anticipatory Grief’ begins at the point of diagnosis
Adjustment is not static
Planning can reduce the rates of complicated grief in parents/carers
ACP’s can be used to allow families to share their thoughts and make plans
Speakers Notes:
Good quality psychological care should be available to families throughout a child’s illness trajectory, and should not just be offered in the short moments before or after death. Studies have demonstrated that grief – ‘anticipatory grief’ begins at the point of diagnosis of a life-limiting condition.
Adjustment is not a static principle and, as a result, teams should be regularly reviewing the holistic needs of a child and their family along the journey of a life-limiting illness.
NICE guidance on End of Life Care for Children demonstrated that clear and open planning before death can reduce the rates of complicated grief. Families should be offered opportunities to share their thoughts and feelings, these may occur in discussion or as part as an ACP.
Emotional and psychological support does not always need to be delivered by psychologist/ counsellors. All members of the MDT have a role in supporting and signposting families.
References:
Goldman A, Hain R, Liben S et al, Oxford textbook of palliative Care for Children, 2nd en (2012), Oxford University Press, Jan Aldridge and Barbara Sourkes.. Chapter 8 ‘ The psychological impact of life-limiting conditions on the child’ pp 79-89
Villanueva G, Murphy MS, Vickers D, Harrop E, Dworzynski K. End of life care for infants, children and young people with life limiting conditions: summary of NICE guidance. BMJ Dec 8;355:i6385.
Yang, B.H., Mu, P.F. and Wang, W.S., The experiences of families living with the anticipatory loss of a school‐age child with spinal muscular atrophy–the parents’ perspectives. Journal of Clinical Nursing, 25(17-18), pp
Pictures:

11. Understanding Grief – ‘Is grief a disease?’
‘Grief’ describes an individuals response to death’
Grief:
Is a process
Is not only about pain
Has variations and fluidity
Has recognisable stages
Does not always need intervention
May never be fully complete
Speakers Notes:
It was Engel that first postulated that grief should be considered as a disease process, in his now classic paper ‘Is grief a disease?’. He outlined that it has a known aetiology; distress attached to its diagnosis; a relatively predictable natural history; evidence of functional impairment and prognosis – whilst healing usually occurs, it is not always complete. However, despite the impact of Engel’s work and psychologists like him, the bulk of what is known about grief and its biomedical complications has not been disseminated to clinicians.
The term ‘grief’ describes the emotional, cognitive, functional and behavioural responses to the death of an individual.
Grief is a process and not a state. It is not only about pain but is mixed with positive feelings such relief, joy, peace and happiness. Some studies have shown that the presence of positive feelings at 6 months following the death of an individual represents a sign of resilience with more positive longer-term outcomes.
Whilst grief has been previously described by psychologists in discrete stages, there is increasing acceptance among modern grief specialists that recognise the variations and fluidity of grief experiences and how they differ considerable in intensity and length among cultural groups and from person to person. The intensity and duration of grief is highly variable – from individual to individual. Factors which may play a role in the intensity and duration include:
Pre-existing personality
Genetic makeup
Unique vulnerabilities – age; health; cultural identity; nature of relationship; number of losses; type of loss
A clinician who does not understand the range of grief symptoms is at risk of intervening in a normal process and derailing it – it therefore should always be recognised but does not always require intervention.
Grief, for many, is never fully complete. It does however have recognisable stages:
Acute Grief – occurs early after a death and is intensely painful and is often characterised by behaviours and emotions that would be considered unusual – intense sadness; crying; pre-occupation; difficulty concentrating and relative disinterest in other people and daily activities of life.
Integrated or abiding grief –Transition usually beings in first few months. Reality and meaning of death are assimilated and although pain is felt; an individual is not consumed and are able to find pleasure in life once again.
There is no evidence that uncomplicated grief requires formal treatment or professional intervention. if someone struggling with grief seeks help, they should have access to empathic support and information that validates that their response is typical after a loss.
References:
Engel, G.L., Is Grief a Disease?: A Challenge for Medical Research. Psychosomatic medicine, 23(1), pp
Weiner, J.S., The stage theory of grief. JAMA, 297(24), pp
Bonanno GA, Kaltman S. The varieties of grief experience. Clin Psychol Rev. 2001;21:705–734.
Shear K, Shair H. Attachment, loss, and complicated grief. Dev Psychobiol. 2005;47:253–267. 
Zisook, S. and Shear, K., Grief and bereavement: what psychiatrists need to know. World Psychiatry, 8(2), pp
Picture:

12. Grief Models Dual Process Model Stroebe and Schut Speaker Notes:
Many theories of bereavement exist, and ideas about such theories have changed over time. Earlier theories surrounding grief described a linear process, implying a ’correct’ order to the journey through grief. Kubler-Ross’s 5 stages of grief is possibly one of the most well known linear descriptors of grief. Although the theory initially related to the diagnosis of a terminal illness, it was later expanded to include all forms of loss.
Linear grief models have more recently been the subject of criticism for their lack of evidence-base, the proscriptive course set by linear stages and how they often fail to reflect variations in cultural or religious background.
Interestingly, Kubler-Ross in later life stated that she had regretting writing the stages in a linear method and she deeply regretted the misunderstanding of her theory.
In 1999, Stoebe and Schut published their dual processing model of grief. This reflective the dynamic fluctuation of the bereaved from loss-orientated grief (grief work, intrusion of grief, breaking bonds/ties, denial/avoidance of restoration/changes) to restoration-orientated grief (attending to the life-changes, doing new things, distraction from grief, denial/avoidance of grief, new roles/identity and relationships).
The progression through the dual process model is much more fluid with oscillations occurring frequently, even many times in one day.
Particular note should be made for how children grieve – this co-dependant on a number of factors similar to those already discussed but also on their stage of development, understanding of death and loss. All children grieve – regardless of age. It is important for professionals to empower families to communicate openly with children, to recognised behavioural changes associated with grief and to understand that children often ‘dip in and out of grief’ – described as ‘puddle-jumping’ by Stokes.
References:
Goldman A, Hain R, Liben S et al, Oxford textbook of palliative Care for Children, 2nd en (2012), Oxford University Press, Sara Portnoy, Di Stubbs. Chapter 15 ‘ ‘Bereavement’ pp
Hain, R. and Jassal, S., 2016. Paediatric palliative medicine. Oxford University Press.Chapter 21 ‘Bereavement”
Monk TH, Houck PR, Shear MK. The daily life of complicated grief patients - what gets missed, what gets added? Death Stud. 2006;30:77–85.
Stoebe M,Schut MS. The dual process model of coping with bereavement: Rationale and description. Death studies Mar 1;23(3):
Stokes JA. Then, now and always: supporting children as they journey through grief: A guide for practitioners. Winston's Wish; 2004.
Pictures:
Accessed March 2017
Accessed March 2017
Dual Process Model Stroebe and Schut

13. Difficulty accepting death Inability to integrate
Complicated Grief
Failed transition from acute grief to integrated grief
Occurs in 10% of bereaved individuals
Risk factors include:
Close relationship to the deceased
Hx of mood/anxiety disorders
Lack of social supports
Validated screening tools exist
Is associated with negative health consequences and maladaptive behaviours
Difficulty accepting death
Inability to integrate
Separation distress
Traumatic distress
Speakers Notes:
Complicated grief results from the failure of transition from the acute phases of grief to integrated grief and occurs in about 10% of bereaved people.
Risk factors for the development of complicated grief include:
Features of complicated grief are difficulty in accepting death accompanied by both intense separation and traumatic distress which last beyond 6 months. They can experience recurrent painful emotions; intense longing for the decease; preoccupation with thoughts of the loved one; sense of disbelief; anger; bitterness; intrusive thoughts about the death. There are grievers who do not want the grief to end – it is all they have left of the relationship with their loved one. Enjoying life may be perceived as betraying their loved one.
Grievers may develop maladaptive behaviours:
Preoccupation
Avoid activities and situations that remind them of loved one.
Feel estranged from others
Validated screening tools exist in the form of the Inventory of Complicated Grief – this should only be utilised by those trained to do so.
Complicated grief is associated with negative health consequences sleep disturbance and disruption of daily routines. Its is also associated with increased risks of cancer, cardiac disease, substance abuse and suicide. Complicated grief must be taken seriously and treated appropriately.
Increased risk of physical illness
Cancer, Cardiovascular disease, Hypertension
Increased risk of mental health problems
Anxiety, Depression
Increased risk of suicide and self-harm
Increased risk of substance misuse
Increase in risk taking behaviours
References:
Shear, K. and Shair, H., Attachment, loss, and complicated grief. Developmental psychobiology, 47(3), pp
Shear MK, Mulhare E. Complicated grief. Psychiatr Ann. 2008;39:662–670.
Shear K, Shair H Attachment, Loss and Complicated Grief. Dev Psychobiol Nov; 47(3):
Prigerson HG, Maciejewski PK, Reynolds CF. Inventory of Complicated Grief: a scale to measure maladaptive symptoms of loss. Psychiatry Res. 1995;59:65–79. 
Germain A, Caroff K, Buysse DJ. Sleep quality in complicated grief. J Trauma Stress. 2005;18:343–346. 
Monk TH, Houck PR, Shear MK. The daily life of complicated grief patients - what gets missed, what gets added? Death Stud. 2006;30:77–85.

14. When to intervene in Grief?
No evidence that uncomplicated grief requires formal treatment or intervention
What helps families/carers through their grief:
Open communication
Encouragement to express feelings and thoughts
Information about what happened and why
Remembering their loved one
Meeting and talking to others
Complicated grief should be referred to professionals
Evidence suggests a mixtures of CBT and motivational interviewing is effective
Speakers Notes:
Grief is an arduous journey which is complicated and variable. The vast majority of people will ultimately end with an acceptable level of adjustment to a life without their loved one. Most bereaved individuals do not require specific interventions. In fact, there is some evidence to suggest that interfering in uncomplicated grief inappropriately can cause detrimental effects on the bereaved individuals.
The basis of our understanding of what helps families through their grief is largely informed by our understanding of grief theory and anecdotally from feedback of bereaved families. These can be summarised as follows:
Open communication - clear honest communication amongst all parties is key in a journey through grief. It allows families to process information, recall memories and share feelings.
Encouragement to express feelings and thoughts – professionals should allow and encourage families to express themselves; do not try to jump in and ’fix’ everything. Writing letters and poems has been shown to help some families.
Information on what has happened and why - professionals should offer clear, honest and open dialogue of events; families may wish to retell events many times over – this process allows them to make sense of events and loss
Remembering their loved one – memories should not only include those related to illness but to the whole person
Meeting and talking to others -
Complicated grief should ideally be referring to specialist in bereavement/psychology. Studies have demonstrated that medication alone is not a successful approach. Individuals benefit from cognitive behavioural therapy, grief specific targeted motivational interviewing.
References:
Goldman A, Hain R, Liben S et al, Oxford textbook of palliative Care for Children, 2nd en (2012), Oxford University Press, Sara Portnoy, Di Stubbs. Chapter 15 ‘ ‘Bereavement’ pp
Zisook, S. and Shear, K., Grief and bereavement: what psychiatrists need to know. World Psychiatry, 8(2), pp

15. Caroline Porter
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