NEWSLETTER OF THE AASW NSW BRANCH

2019

SOCIAL WORK INFORMATION, FACTS AND TOPICS

INSIDEFarewell Swift: Newsletter’s last issue / 3

Palliative Care

Choice of place for end of life care / 9

Measuring the impact of social work interventions on patient, carer and family outcomes in palliative care / 16

SWift

CONTENTS

04 Palliativecaresocialwork:Anoverview

07 Dreamsproject:Dreamsforpalliativecarepatients–morethanasinglehappymomentintime;ameaningfulmemoryforever

09 Improvingthetransitionfromapalliativecareunittoresidentialagedcare

11 Choiceofplaceforendoflifecare

13 Reflectionsandchallengesinpalliativecaresocialwork:Roledefinitionandworkersatisfaction

16 Measuringtheimpactofsocialworkinterventionsonpatient,carerandfamilyoutcomesinpalliativecare

19 Psychosocialantecedentsimpactingon“sorrybusiness”forIndigenouspatientsinapalliativecareunit

21 Socialworksupportinbereavementandviewingthebody

24 Palliativecaresocialworkerscelebrated20yearsasapracticegroupin2016

E: aaswnsw@aasw.asn.au Membership freecall 1800 630 124

www.aasw.asn.au

SWIFT magazine highlights the issues affecting social work in NSW today. It focuses on the varied work of social workers, innovative practice, achievements and reflections and experiences.

Disclaimer The views, opinions and advice expressed in this newsletter are those of the authors and contributors, and not necessarily those of, or endorsed by, the Branch Management Committee (BMC) AASW NSW Branch.

BRANCH MANAGEMENT COMMITTEERonnie D’SouzaRenee GriffinDiane HolmesSamantha MillerMali Newman-PlantNatasha SalimbeniParasdeep VirkJack WhitneyAnita Willey

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Since its inception in 1996, the Palliative Care Social Workers practice group has valued the cross-section of experiences, issues and challenges in the common pursuit of providing patient-centred care to our patients, families and carers. Many areas of practice have emerged for discussion, sharing of experience and approaches to care, resourcing, advocacy, researching, and publishing.

The last time our group submitted to an AASW newsletter was in June 2000, Vol. 2 NSW Branch Newsletter, collated by inaugural member, then editor, Leith Cooper. At that time, we identified the following as relevant practice areas: the transition from oncology to palliative care, the place of denial in the experience of dying, ethical dilemmas in the care of HIV/AIDS patients, supporting children of dying parents, cultural diversity, exploring adapting to unexpected changes in illness progression, and noted the introduction of the Graduate Certificate in Dying, Death and Palliative Care at University of Sydney in which some of us were fortunate to enrol.

A great deal of diversity has since emerged in our practice. Publications representing our ongoing practice are addressed in this newsletter: an overview of palliative care practice, the issue of place of choice in end-of-life care, the transition from a palliative care unit to residential aged care, dreams for palliative care patients, challenges in current practice, measuring the impact of social work interventions, cumulative grief and dying in the Indigenous culture, changes and future vision.

The Palliative Care Social Workers practice group celebrated our 20th anniversary in May 2016 and in this newsletter we share about that celebration and the reflection on the achievements of our group over 20 years. We appreciate the work of social workers who founded our group and were involved initially and over the years, our achievements in that time and the enthusiasm to combine our knowledge and experience in a spirit of mutual support and information exchange henceforth. We look forward to the continuation of our practice group, and contributions to our profession for the next 20 years and beyond.

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Trish McKinnon

The AASW New South Wales Palliative Care Social Work Practice Group is pleased to have been invited by the AASW NSW Branch to produce this special edition of the Swift newsletter. It has been an opportunity for us to reflect on our professional identity as social workers in end of life, and the development of our group over the past 20 years. As it happens, this is to be the final issue of the newsletter to be produced.

The articles in this edition highlight the skilled professional practice of palliative care social workers, with articles outlining the role of social work in this field, discussion of choice of place for end of life care, psychosocial issues for Indigenous people in a palliative care unit, as well as an example of practice going above and beyond with a dreams program for palliative care patients.

The importance of clinician-led research is demonstrated in articles relating to improving the transition from a palliative care unit to residential aged care and viewing a deceased person’s body after death. Research in these areas has led directly to service changes and improvements in practice.

We hope you will enjoy reading about the work of palliative care social workers, and feel honoured to write the last edition of Swift.

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Brendan Myhill, Trish McKinnon and Vivienne Connolly (co-editors)

FAREWELL SWIFT

SWIFT 2019 3

PALLIATIVE CARE SOCIAL WORK:

AN OVERVIEWJulie Garrard, with acknowledgement to Jane Hogan (Calvary Health Care Kogarah)

Juliepractisedasasocialworkerfrom1985–2017.Shespecialisedinpalliativecarefrom1999,workingatCalvaryHealthCareKogarahandthenGreenwichHospital.Juliewasfundedfor2researchprojectsandanoverseassabbatical.ShealsosatasaProfessionalMemberoftheNSWGuardianshipTribunal(nowNCAT)from2001–2014.

ABOUT

THE AUTHOR:

Social work role in palliative care

A study conducted in NSW shows that the primary focus of palliative social work is “psychological adjustment to illness and anticipated death, including crisis intervention; anticipatory grief and bereavement counselling; exploration of existential, spiritual, and meaning-of-life issues” (McKinnon et al. 2007). Other interventions include preparing children for loss and change, support to caregivers, relationship and work concerns, understanding and responding to prognosis, advocacy for patient’s preferred place of care and death, assisting with the impacts of social isolation, family estrangement, migration and trauma, and with the

financial and legal issues arising from a terminal illness (Garrard et al., 2015). Most palliative care services provide bereavement counselling, which may be staffed by social workers, counsellors or volunteers.

Social workers keep the focus on the needs and wishes of the dying patient and their families. We appreciate and are committed to engage in ideas of hope, dignity and respect, and take a non-judgemental approach and advocate for this in the multidisciplinary team. In palliative care we are aware of the close relationship between physical pain, emotional pain, spiritual distress and behaviour, and our aim is to provide

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the best quality of life for patients and their families as patients approach the end of their lives.

Clinically, specific social work interventions include: psychosocial assessments; counselling; advocacy and guidance for patient and carer concerns and wishes; facilitation of family conferences and referral to community resources; education, information and referral regarding the legal context of death and dying (including advanced care planning). Social workers play a pivotal coordinating role for discharge planning, whether to the patient’s home or to residential aged care. Discharge is often a complex process as the patient’s condition can fluctuate and their needs for ongoing care can be very high.

Facing death

Living with an incurable condition that will result in a shortened life expectancy is often an overwhelming and extremely stressful experience for patients and their family. This crisis can produce intense and ongoing grief and uncertainty, together with enormous feelings of helplessness, insecurity, and loss of control. Practical and lifestyle adjustments can be very challenging to manage, as well as the gradual decrease in physical and social independence caused by disease symptoms. This may contribute to an existential crisis for the patient, and it is not surprising that depression and anxiety are common among patients with life-threatening illnesses.

Social workers in palliative care therefore have an important role

of providing in-depth psychological and spiritual support to patients and carers at this very vulnerable time, as they prepare for the end of life. They often use suitable and effective interventions such as mindfulness, relaxation and dignity-conserving therapy and other meaning-centred therapies to give patients the opportunity to safely explore existential and psycho-spiritual concerns (Strada, 2009:53).

Although it is beneficial to have mental health professionals accessible to our multidisciplinary teams when necessary and referral for psychological and psychiatric assessment and treatment may be indicated for those patients who have major adjustment disorders or more serious mental health issues, social workers in this field frequently express concern about the over-medicalisation of normal psychological and emotional reactions to such a significant and profound existential crisis as one’s imminent death.

Denial

“‘Denial gets a bad rap as dysfunctional,’ says social worker Brenda Mamber, ‘But actually it can be very functional in protecting a person from an emotional assault of information they might not otherwise be able to handle.’” (Dennis, 2014)

One of the regular tasks of social workers in this field is to deal with the issue of “denial”, a term used widely in palliative care, referring to the refusal to accept that one is dying. This language partly derives from Kubler-Ross’ work on the Grief Cycle model, published in her book “On Death & Dying” in 1969. She claimed denial is the first stage we go through before we reach the final stage of acceptance that we are actually dying (Kubler-Ross, 1969).

However, palliative care social workers understand there is a more positive role for denial in facing one’s mortality. It is not always maladaptive, but can be a mechanism used to cope with reality, maintain hope, and have a sense of control (Morley, 1997:381). This is vital to emotional functioning, and to finding meaning and purpose when dying. It can help patients and caregivers cope with the reality they are facing and can relieve stress, as well as preserve relationships. The dying person often knows the truth of their condition, even though they may appear to be in denial. They are often actively preparing for death by writing wills and making other preparations without ever explicitly acknowledging their imminent death. Sensitive appreciation of these complex behaviours is crucial to the social work role. The social worker then often reassures other team members who may have concerns.

“The hardest thing

is to really, deeply

believe that we or our

loved ones will die.”

Henig, 2007

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Health Promoting Palliative Care

Many in the media and the health professions claim that modern western society has become a “death-denying” society, as we are not exposed to the reality of death anymore and this makes impending death more frightening. Concern over this lack of community preparedness for death was the springboard for “Health Promoting Palliative Care”, which was an Australian public health approach developed by Allan Kellehear (1999) and now continued by the Groundswell Project (Noonan, 2016). This approach highlights an opportunity for social workers to develop end-of-life care practices that can educate and support communities to respond effectively when death and dying occurs, and help create more positive attitudes to death.

For example, in 2011, Palliative Care NSW (the peak NSW advocacy body) included on its website the fact sheet on “Signs and Symptoms of Approaching Death”, as proposed by this author. This information educates and empowers caregivers to better prepare for and understand the final stage of their loved one’s terminal illness. It covers detailed descriptions of the usual physical, emotional, behavioural and spiritual signs in the last few days of life. It describes ways to provide comfort, support and dignity as the person withdraws from life.

References

McKinnon,P,Garrard,J,Graham,C,Myhill,B,&Bateman,M.(2007).InitiativesindevelopingKPIs:Evaluatingpalliativecaresocialwork.Posterpresentedatthe9thAustralianPalliativeCareConference,Melbourne,Victoria.

Dennis,J.(2014).WhenDyingMeetsDenial.HuffPost, the Blog, 26/2/2014

Henig,R.(2005).Willweeverarriveatagooddeath?New York Times Magazine, 7/8/2005,4

Kellehear,A.(1999).Health Promoting Palliative Care.OxfordUniversityPress,Melbourne

Kubler-Ross,E.(1969).On Death and Dying.TavistockPublications,London,35

Garrard,J,Graham,C,McKinnon,P,&Myhill,B.(2015).KeyPerformanceIndicatorsforpalliativecaresocialwork:ApilotstudyinNewSouthWales,Australia.EuropeanJournalofPalliativeCare,22(4),194–197

Morley,C.(1997).Theuseofdenialbypatientswithcancer.Professional Nurse,12(5),380-381

Noonan,K,Horsfall,D,Leonard,R,&Rosenberg,J.(2016).Developingdeathliteracy.Progress in Palliative Care,24:(1),31-35

Strada,E,(2009).Grief,demoralisation,anddepression:Diagnosticchallengesandtreatmentmodalities.Primary Psychiatry. 16(5),49-55

Working in the field of death and dying

This field of social work practice raises questions about our own mortality. It helps if we view dying as a valid life stage and grief as a normal part of life. Competence and comfort with death and dying develop as we have continued exposure and reflect on our practice. It is essential to seek support from colleagues. Avenues for this are clinical supervision, weekly team meetings and case conferences, professional development activities and the Australian Association of Social Workers practice groups. Many palliative care social workers will also utilise personal strategies to help them integrate and process their experiences to ensure their own emotional responses do not negatively impact on their professional practice. Examples of this are meditation, mindfulness, relaxation, yoga, journaling, retreats and physical exercise.

Social work students and younger social workers may ask why you would choose this field of practice, however experienced palliative care social workers are unanimous in agreeing there are significant personal rewards in this work and commonly remain in their positions long term. We find it an honour and a privilege to share the journey with dying patients, their caregivers and families and to know that we can make a difference.

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Dr Jenny Broadbent

DrJennyBroadbentobtainedherBachelorofSocialWork(Hons)in1995.Hersocialworkpracticehasincludedchildprotection,childandadolescentmentalhealth,oncologyandpalliativecare.ShecurrentlyworksincommunitypalliativecareatGreenwichHospital,Sydney.SheobtainedherDoctorofSocialWorkin2011onherthesis“SpiritualityofYoungPeoplewithCancer”.

ABOUT

THE AUTHOR:DREAMS PROJECT:

DREAMS FOR PALLIATIVE CARE PATIENTS –

MORE THAN A SINGLE HAPPY MOMENT IN TIME;

A MEANINGFUL MEMORY FOREVER

The Dreams Project provides dreams/wishes to palliative care patients. In doing so, it creates innovative ways for social workers to connect with clients, including offering something tangible as a means of engaging. Other positive outcomes of the Dreams Project include finding meaning, restoring and supporting hope, and educating the community about palliative care. This paper will describe the Dreams Project and highlight examples of its “silver linings” (unintended consequences).

The Dreams Project was established in 2010 to assist, facilitate and, where appropriate, fund life-long dreams and wishes of HammondCare’s palliative care patients at Greenwich Hospital. Although it was originally a joint venture of social work and diversionary therapy, the Dreams Project developed into a social work-led project as it extended into all HammondCare inpatient and community patient services and the Bereavement Services. The project prioritises younger people, people with young children, and people who are disadvantaged financially or socially isolated. So far, 139 dreams have been fulfilled (from actual referrals). Dreams generally fall into four categories: I dream to do [one last trip home], I dream to go [on a family holiday], I dream to meet [the Governor-General] and I dream to have [a family portrait]. Dreams come in all shapes and sizes - celebrations and special social events with family and friends in the inpatient units and at restaurants, harbour

cruises, family portraits, helicopter rides, theatre outings, sporting games and events, weekends away and short holidays, small garden/balcony makeovers, bedbound people being transported home in a private ambulance to farewell their home, pets and garden. The aim is to tailor the dream to the person and their situation.

The Dreams Project is administered by a steering committee made up of social workers, senior hospital management and fundraising staff and volunteers. A dream is often identified by the palliative care social worker when conducting a psychosocial assessment. This dream is discussed at a multidisciplinary clinical meeting (to consider the person’s prognosis, needs and feasibility) and subsequently approved by the Dreams Project Steering Committee after which the Volunteer Dreams Coordinator collaborates with the clinical staff to organise the dream. All dreams are made possible

SWIFT 2019 7

by generous donors and passionate volunteers. Social work involvement ensures appropriate sensitivity and privacy are maintained and that marketing, promotion and advertising of the person’s dream are secondary to the primary focus of fulfilling the dream.

The following story highlights the possibilities and hopes inspired by dreams. Jun* was a 58-year-old Korean man who had end stage T-cell large granular lymphocytic leukaemia with symptoms of reduced mobility, incontinence and pain. Jun presented as a quiet and withdrawn man, who rarely ventured outside his home. His family requested a beach holiday with his wife, children and grandchildren. To ensure Jun’s enjoyment, they asked for an accessible air-conditioned apartment with a fully functioning kitchen and Wi-Fi, with a view of the beach or near a beach and close to a hospital.

After Jun’s dream, his daughter emailed the steering committee, “Dad was in great spirits throughout the whole trip and even expressed interest in going outside to enjoy the wonderful view. He also ate a lot (to Mum’s surprise). Mum was also in better spirits and relieved after to see Dad in a much better condition whilst in Terrigal …”

When the Community Nurses visited Jun after the Terrigal holiday, they noted that things were much improved, Jun and his wife “spoke with enthusiasm about their time in Terrigal …” His wife no longer needed carer respite, “I don’t need any help because I have hope and I can do everything”. She emphasised the importance of the whole family spending time together at Terrigal (see Weingarten (2007)’s “hope” as a practice “doing hope with others”).

Some weeks later, Jun’s wife met with the author. Sadly, and unbeknown to us, Jun had died suddenly and peacefully. She explained that after the Terrigal trip, Jun requested to go out each day

and they visited 12 places in NSW (Blue Mountains, Wollongong, Kiama, Manly Beach, Bondi Beach). She reiterated that the Terrigal trip had changed Jun, “the Dreams Project truly was a miracle, as it brought a spark within him. His passion for driving on long journeys and fishing was reignited … and we thank you for putting back the spirit and joy in Jun”.

In essence, Jun and his family reconnected with “hope”. While it was not the big hoped-for cure, it brought them joy. Instead of Jun’s death being described as “fading away”, his ending and departure were noteworthy and remarkable. His family have a wonderful story of Jun reconnecting with his earlier life and “going out with a bang”. With this extraordinary ending, the clinical team concluded that the family were less likely to be a bereavement risk.

The Dreams Project also had other positive outcomes. Sam’s* dream – to play golf with members of his family for his birthday – offered the social worker a chance to engage with several family members to organise the event and, alongside this task, to assess their coping with their father’s decline and offer support and counselling. The social worker was also able to use the game of golf as a means of engaging more deeply with the client about his life and what was important to him.

In another instance, Duncan and his wife’s feedback following their dream – a holiday away in Queensland with their two young children – demonstrated their meaning-making while living with a terminal illness. On the one hand, it felt unfair that he had cancer at a young age, but,

… having the break allowed us the time and space to regroup and reflect on what is important to us going forward, and we are in a much better place this year for it. The time away helped us to put our priorities back in our family, and left us refreshed. We had such a

lovely holiday, and continue to draw on our memories of our time away when things are tough. Our kids also often talk about the holiday, and it is obvious that it brought them a great deal of joy.

No trip can compensate for cancer, but it can provide opportunities to feel special, valued and supported.

In conclusion, the Dreams Project has a number of unintended consequences that contribute to effective social work practice. This innovative project, with its focus on the patient as a person with desires and strengths, sits comfortably with social work’s commitment to working holistically with clients. Secondly, offering a dream to a person as part of the psychosocial assessment can help the social worker’s engagement with the person/family. It can be something practical to offer when the idea of counselling or emotional support is not (yet) palatable. Thirdly, the Dreams Project is an example of Weingarten’s “doing hope with others” as in almost all cases, Dreams Project recipients have requested a dream that involves family or friends and is something that they enjoy now and leaves a legacy for the future. Fourthly, the Dreams Project offers opportunities for meaning-making and holding “hope” when a hoped-for cure is not available. Lastly, on a socio-political level, the Dreams Project seeks to educate businesses and the local community about the breadth of palliative care.

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*Pseudonyms

References

Weingarten,K,Hopeinatimeofglobaldespair.InCFlaskas,IMcCarthy,&JSheehan(2007).Adversity, forgiveness and reconciliation, hope and despair in narrative and family therapy.London,Taylor&FrancisGroup

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Julie Garrard

Juliepractisedasasocialworkerfrom1985-2017.Shespecialisedinpalliativecarefrom1999,workingatCalvaryHealthCareKogarahandthenGreenwichHospital.Juliewasfundedfor2researchprojectsandanoverseassabbatical.ShealsosatasaProfessionalMemberoftheNSWGuardianshipTribunal(nowNCAT)from2001–2014.

ABOUT

THE AUTHOR:IMPROVING THE TRANSITION FROM A

PALLIATIVE CARE UNIT TO RESIDENTIAL

AGED CARE

Social workers in the AASW Palliative Care Practice Group identified transfer to nursing home from a palliative care unit or hospice as the most distressing aspect of their work at a meeting in November 2000.

This was due to the anecdotal evidence that such transferred patients died soon after moving into a nursing home, and because of the stress the relocation process caused to patients and families. As a consequence, the group agreed to collect data about the survival times after transfer to nursing home from 6 palliative care units across Sydney and Wollongong. This was a slow process over 3 years, but after 2 rounds of data collection, we interviewed a small sample of bereaved relatives about their experiences.

This unfunded collaborative research demonstrated how short the survival times were for most transferred patients and how traumatic the whole process was for family members. In the context of my Master of Social Work studies, I collated and presented the results widely at palliative care conferences and we reported them in our teams. I also identified literature on the topic of Relocation Stress Syndrome (Porock et al., 1997) and found a small study by a social worker on the distress caused by transferring patients from palliative care to nursing home in the UK (Macabee, 1994). During this time I was Social Work Manager at Calvary Kogarah and on the basis of this background research, Calvary applied

for and received funding to develop a new model of care with a goal to improve this transition experience.

I was employed as the part-time Project Coordinator for this 3-year Commonwealth Government grant and the roles included: project design, running a governing committee, promoting and explaining the project to Calvary staff, setting up partnerships with local nursing homes, actively participating in all stages of the transfer of patients from Calvary to nursing homes and regular visits to them and their families in the nursing homes for 3 months, then bereavement follow-up if required, plus education and support to nursing home staff, data collection and 6-monthly reports.

The project was called Collaboration in Trust and Care, as the basis of the model we developed was to maintain trust in the palliative care service through the transition from the Calvary inpatient unit to the nursing home, in order to reduce the distress and fear that patients and families had usually expressed at the prospect of leaving the palliative care unit. We also hoped to help them transfer their trust to the new environment, knowing the palliative care service had not abandoned them. The project social worker

SWIFT 2019 9

relied on the support and visits of the community palliative care nurses. The involvement of the palliative care nurses was crucial to the success of the model when a complex clinical problem arose after transfer, during the next phase of the person’s deterioration, or during terminal care. Most nursing homes were only too happy to have visits from the palliative care service and many of them were relieved to have the psychosocial input from the social worker, especially if family issues or conflict arose, and to provide support through the terminal phase. Most nursing homes do not have the benefit of this kind of professional psychosocial support and their nurses are often too busy to meet the intense emotional needs of residents and families at the end of life. The social worker’s support of nursing home staff was also highly valued.

The model was evaluated rigorously and the results were very encouraging on many fronts. This resulted in government funding to embed the model into the Calvary Kogarah Palliative Care Service. It was renamed the Palliative Aged Care Program and has had a few iterations since the original project, which was completed in 2009. I was fortunate to receive an International Sabbatical Grant from the NSW Cancer Institute in 2008 to further this research and to share the model we developed.

I presented papers on this project and on the earlier research findings at several Australian conferences and two overseas conferences in Norway and Ireland, and at many palliative care services here and in UK, Ireland and USA. In all these locations, except in the USA, palliative care health professionals, including many medical directors, expressed a wish to set up similar support and follow-up systems for their transferred patients and expressed concern to improve the outcomes for this frail group of palliative patients who often

do not do well when transferred into a nursing home.

However, the model in the USA was quite different. They had a national Medicare Hospice system that funded multidisciplinary hospice teams to provide quite significant services, including social work, to palliative patients, who are aged from 65 years, in nursing homes, as well as at home. I only visited two such teams, one in Columbia, Missouri and one in Providence, Rhode Island, but I was very impressed with, and envious of, the resources that their hospice programs were able to provide to this vulnerable population. I met many social workers there who were surprised to learn how rare it is for social workers in palliative care or hospice teams outside the USA to provide psychosocial support to this cohort living in nursing homes. One highlight of the visit to Rhode Island was meeting Oscar, the famous cat who knew when a resident in the nursing home where he lived (with several other cats) was approaching death and who kept them company on their final journey.

Coming back to the local scene, Calvary Kogarah has continued to employ a social worker and a community nurse, both part-time, in the Palliative Aged Care Program. Recently two nurse practitioners were employed to conduct weekly reviews of residents with identified palliative needs in local aged care homes, in addition to the continuing social work role.*

Despite the wide interest shown in this program, most other palliative care services still provide only nursing and/or medical visits to palliative residents living in aged care homes. This type of social work role is quite unique to Calvary Kogarah to my knowledge. Many other services in Australia and overseas have expressed a wish to reproduce this type of support but have not secured the funding to embed it. I would argue that the social work component of care to these transferred patients and their families is just as important as the expert palliative nursing and/or medical role, as the evaluation of the original project demonstrated how highly social work input was valued by transferred residents, families and nursing home staff.

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References

Maccabee,J.(1994).Theeffectoftransferfromapalliativecareunittonursinghomes–arepatients’andrelatives’needsmet?Palliative Medicine,8,211-214

Porock,D,Martin,K.,Oldham,R,Underwood,R.(1997).Relocationstresssyndrome:Thecaseofpalliativecarepatients.Palliative Medicine,11,444-450.

*ThankyoutoMichaelDevery,PalliativeAgedCareProgramSocialWorkeratCalvaryKogarah,forupdatedinformationinApril2018.

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Trish McKinnon

TrishMcKinnon,BADipSocWk,GradCertDeath,Dying&PalliativeCare,SydneyUniversity,hasworkedinPalliativeCareandBereavementsince1989.Sheenjoysaglobalperspectiveattendingandpresentingatinternationalforums.AlongwithPCPGcolleaguesshehaspublishedarticlesintheOxford Textbook of Palliative Social Work(2011)and European Journal of Palliative Care(2015).

ABOUT

THE AUTHOR:CHOICE OF PLACE FOR END OF LIFE CARE

World Health Organisation (2004) guidelines “encourage health services to enquire of people their preference for place of care and death” with the aim of meeting individual preferences being an ultimate measure of success.

In daily practice in the health setting, this involves a complex interrelationship of individual, family and environmental factors. Determining factors include cultural history and beliefs, the family fabric and composition, geographical location, personality and resources. Psychological considerations such as “not wanting to be a burden” and fear of the dying process need to be processed. Accessible backup from family, friends, communities, neighbourhoods and palliative care or consultation are factors in implementation.

Advocacy is a vital component in which capacity the social worker can play a pivotal role in discerning and implementation. Policies, health professionals’ perspectives, settings of care and innovative solutions are important contributors. The confidence and resourcefulness of the social worker play their part in the final outcome.

The case of Todor, who gave permission for his story to be told, illustrates this conglomeration of factors. Todor, 79, was admitted to hospital with lung cancer followed by a stroke. He was born and educated in Bulgaria, achieving a professorial appointment in architecture. He came to Australia 33 years ago, having also lived and worked in America. He was

world-renowned for his religious mosaics, design and building of a hermitage church in country NSW. His son lived in Sofia, remaining in regular contact including periodic revisiting by his father. In Australia, Todor received an Age Pension and lived in a Department of Housing flat, with a loyal fellow European friend of 15 years nearby, supporting him through his illness. Todor’s independence was declining and his capacity to live alone diminishing. A period of active rehabilitation did not alter this state. He was not anticipated to die in the near future. The next step envisaged by the healthcare system was a residential care facility. Todor was depressed.

Multidisciplinary teamwork is a vital ingredient in patient-centred care and quality of life. Wonderful rapport with the palliative care physiotherapist engaged Todor in slow stream activity, simultaneously connecting with his life history in an encouraging relationship, to maintain mobility. Social work sought to establish family capacity to have him at home, and Todor’s son was most receptive. The palliative care doctor provided regular reassurance and guidance that he had potentially months to live. Advocacy for his return to Bulgaria ensued. An American cardinal made possible an airline flight. The hospital’s Mission and Transport departments were

SWIFT 2019 11

engaged to facilitate and accompany him on the flight. Executive approval was given.

When this prospect was relayed to Todor, synchronistically in the physiotherapy gym, he exclaimed with hands clasped, “it’s a miracle”. Mixed emotions ensued, encompassing: the impossible dream; anxiety about managing the long flight; a final goodbye to his dedicated friend, who brought in his passport, packed his bag and cleared out his unit; anticipating being “at home” with family in his own country; recalling his creative achievements in Australian context; now embarking on his final journey. Nurses prepared him for the flight. Pharmacy provided him with medication for flight and arrival. Macedonian speaking drivers took him to the plane. He and his hospital escort negotiated two airport stops, were met at Sofia by the awaiting family and Todor was embraced back into his familiar home of yesteryear.

Surrounded by artworks he loved and family warmth, he celebrated his 80th birthday (with local wine) and enjoyed an unsurpassed quality of life for 3 more months. He was linked with the palliative care service (with which the social worker was familiar from an International Multidisciplinary Forum on Palliative Care attended there), with whom he could converse in his own language. He died a comfortable and supported death in his own home of origin – a far cry from alone and depressed, in a nursing home, on the other side of the world.

By way of endorsing this multi-levelled patient-centred approach to care, within our organisation, the social worker and nursing unit manager successfully nominated the hospital’s Head of Transport for the Chief Executive Officer’s annual excellence award.

The rights of the patient are championed by establishing their true

preferences, including monitoring changing preferences. Implementation of the preferred plan is the challenge. Comprehensive awareness of the patient’s psychosocial history and circumstances is integral. Communication, consultation, coordination are all well-known and applied aspects of the social work role. Add to this creativity and a broad-spectrum view. Resourcing is an opportunity to think broadly and outside the square, as well as canvassing and utilising organisational sources within the system.

Challenges include pressures within social systems, societal attitudes, and professionally and effectively promoting the ethos of patient-centred care.

Florence Hollis’ concept of the person–situation–environment configuration and the tenets of medical social work – consideration of the illness, its impact on the person, the environment and its impact on the person and the illness – is a framework for adaptation we can usefully apply to our palliative care patients.

Complexity is exacerbated where the person is approaching the end of their life, with anticipatory grief tasks to complete and an uncertain prognosis and trajectory. Fostering choices, making decisions and implementing them in a timely manner, in changing circumstances, to maximise choice and quality of life, calls for integration, mobilisation, effective liaison and organisation. Social and emotional support and reassurance in adaptation to a changing lifestyle for the terminally ill person and their carers is an essential aspect of a successful choice, which predictably may change over time, requiring flexibility in direction, towards “a good death”.

Social workers can be the champion of the patient’s voice.

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References

Beccaro,M.etal.(2006).Actualandpreferredplaceofdeathofcancerpatients.InJournal of Epidemiological Community Health, 2006,60,412-416

Costa,V.etal.(2016).Thedeterminantsofhomeandnursinghomedeath:Asystematicreviewandmeta-analysis.InBMC Palliative Care,2016,15:8

Hollis,F.(1964).Casework – a psychosocial therapy. ColumbiaUniversity,RandomHouse,NewYork

O’Learyetal.(2017).Placeofcarefromreferraltospecialistpalliativecareuntildeath.InBMJ Supportive & Palliative Care, 2017,7,53-59

WorldHealthOrganisation(2004):www.euro.who.int/document.pdf

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Brendan Myhill

BrendanMyhillisasocialworkerattheConcordCentreforPalliativeCare,atConcordRepatriationGeneralHospital.Brendanhasworkedinbothinpatientandcommunitysettings,andisapastsecretaryoftheAASWNSWPalliativeCareSocialWorkersPracticeGroup.

ABOUT

THE AUTHOR:REFLECTIONS AND CHALLENGES IN PALLIATIVE

CARE SOCIAL WORK: ROLE DEFINITION AND

WORKER SATISFACTION

In 2007 the AASW NSW Palliative Care Social Workers Practice Group (PCPG) was looking at the concept of setting key performance indicators (KPIs) for palliative care social workers. The aim was to create our own outcome measures in order to avoid having inappropriate measures imposed externally.

A pilot study was undertaken, and although the group decided not to further pursue a goal of setting specific KPIs it usefully defined a collective view of our role as specialist palliative care social workers. The results of the study showed that with almost 74.5% of clients, our interventions focused on psychological adjustment, including anticipatory grief. The results also showed a strong focus on future care planning, financial and carer issues (Garrard et al. 2015).

A decade later it is useful to ask how the context and our contribution has changed. What is our current contribution individually and as a professional group?

In recent years, several challenges have faced palliative care social workers. The introduction of My Aged Care has bureaucratised the organisation of aged care services in a way that can limit the ability of social workers to directly advocate for our client’s needs, and restricts the use our previously strong links with service providers and networks. Wait times for services nationally can be forbidding, leaving many of our older clients frustrated and under-resourced.

The introduction of the National Disability Insurance Scheme (NDIS) has been a boon to those people eligible for the scheme. Unfortunately, it has also posed grave challenges for those who have not met the scheme’s criteria, which to date has been the majority of our clients in palliative care. There has been the unintended side effect of leaving many people under the age of 65 either without access to, or with only very limited access to, care services at home.This has been a major issue for palliative care social workers recently, as we strive to access adequate resources for families in crisis but are unable to meet their needs.

Accessing income support through Centrelink can be disheartening, with automation and centralisation of processes meaning the ability to advocate directly for our clients is limited, and we often observe our clients waiting for months for their claims to be assessed.In this climate, meeting client needs seems increasingly difficult and it can be a challenge for social workers to maintain their morale and sense of efficacy. To promote our satisfaction as social workers, and our resilience

SWIFT 2019 13

as individuals and as a profession, calls for rethinking and focusing on those aspects of our role that form our unique professional contribution.

When working in a context of death, dying and bereavement, which can be challenging and heavy, it is important to have a sense of our own achievements both personally and professionally.

Collegial support and inspiration are key in maintaining morale and professional development. The PCPG has been active for twenty years. In this time the group has met regularly to exchange information and work on shared issues. The group has held education days to promote learning about palliative care social work and share skills with those that don’t work in the area. In 2012 the group worked together to make

a submission to the Senate Enquiry into Palliative Care, and made a submission regarding Voluntary Assisted dying in 2016. Members of the PCPG have worked together on research projects, published in international journals and written chapters for textbooks. We have an important role as advocates for the vulnerable in our community, and members have also pooled their energies to campaign on important issues, such as access to care services for people aged under 65.

For two decades the group has been a source of inspiration, collaboration, professional development, support and mentoring for social workers in palliative care. The group continues to grow in numbers and strength, and continues to foster the development of palliative care social work.

As individual workers, palliative care social workers demonstrate their value daily providing our clients with counselling around issues of anticipatory grief, existential issues, family relationships and estrangement. We attend to this emotion-laden work, while also addressing the practical aspects of future care planning, negotiation of care services and linking people to support services. Social workers have the distinctive ability to work in both practical and psychological support. When considering the work of Stroebe and Schut, and the Dual Process model of grief (Stroebe & Schut, 2010) social workers are uniquely suited to meet the wide and varied needs of our clients and support them as they process the losses they are experiencing, and also assist those

When working

in a context of

death, dying and

bereavement … it is

important to have

a sense of our own

achievements both

personally and

professionally.

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who will be bereaved in taking on new roles and equipping themselves for a life without the deceased.

Social workers are key in supporting the needs of families with young children, educating families and care teams on ways to support children and young people, and ensuring a focus on their needs. The significant contribution in this area is demonstrated in the research of Grace Christ (Christ, 2000), and the years of practice wisdom of many local colleagues.

Social workers have a strong history of clinical supervision, and of peer support. Increasingly our colleagues from other professional groups within palliative care are recognising the need for this within their own professional groups. With our skills and knowledge in the area of clinical supervision and peer support, we can be leaders in this field for our colleagues from other disciplines within palliative care.

Work is underway in Australia to create practice standards for social work in palliative and end of life care. This follows on from the work of our colleagues in Europe (Hughes et al., 2014), the USA (Gwyther et al, 2005) and Canada (Bosma et al., 2010) who have already established their own. Practice standards would be a way of promoting the quality of work by palliative care social workers, setting basic standards of required knowledge, skills and values that must be demonstrated, covering the key areas of our practice.

Defining and owning the skills and knowledge that make us irreplaceable

as profession will be a source of ongoing resilience and mutual inspiration. In this current time of restrictions and challenge, it is important as individuals to take time to reflect on our own strengths. At the end of each workday it is all too easy to remember the losses and the frustrations. Building in a time, in supervision and each day, to focus on what we have done well and what positive changes we have made for our clients, will give us the energy and drive to keep working and the strength to improve where we need to.

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References

Garrard,J,Graham,C,McKinnon,P,&Myhill,B.(2015).KeyPerformanceIndicatorsforpalliativecaresocialwork:ApilotstudyinNewSouthWales,Australia.EJPC;22(4)

Stroebe,M,&Schut,H.(2010).Thedualprocessmodelofcopingwithbereavement:Adecadeon.OMEGA,Vol.61(4)273-289

Christ,GH.(2000).Healing children’s grief: Surviving a parent’s death from cancer.NewYork,NY:OxfordUniversityPress

Hughes,S,Firth,P,&Oliviere,D.(2014).CorecompetenciesforpalliativecaresocialworkinEurope:AnEAPCWhitePaper–Part1.EJPC;21:300-305

Gwyther,LP,Altilio,T,Blacker,Set al. (2005).Socialworkcompetenciesinpalliativeandend-of-lifecare.J Soc Work End Life Palliat Care,1:87-120

Bosma,H,Johnston,M,Cadell,S,et al.(2010). Creatingsocialworkcompetenciesforpracticeinhospicepalliativecare.Palliat Med,24:79-87

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Dr Pippa Blackburn

DrPippaBlackburnistheBereavementCoordinatorforIllawarraShoalhavenPalliativeCareService.PippapreviouslyworkedasaFacilitatorwiththePalliativeCareOutcomesCollaboration(PCOC)attheAustralianHealthServicesResearchInstitute(AHSRI),UniversityofWollongong.PippahasworkedextensivelyasaspecialistpalliativecaresocialworkerinarangeofsettingsandherqualificationsincludeaMastersinPalliativeCareandaPhDfocusingonbereavement.PippaistheconvenerofasteeringcommitteecurrentlydevelopingnationalPalliativeandEndofLifeCareSocialWorkPracticeStandards.

ABOUT

THE AUTHOR:MEASURING THE IMPACT OF SOCIAL WORK

INTERVENTIONS ON PATIENT, CARER AND

FAMILY OUTCOMES IN PALLIATIVE CARE

Social workers have a unique skillset to contribute to the interdisciplinary palliative care team. Working within a person-in-environment framework, social workers address multiple social determinants of health that impact on a person’s quality of life, particularly those from vulnerable and disadvantaged populations (Steketee, Ross, & Wachman, 2017). Social workers also support patients and families to navigate systems and structural barriers that impact access to care, support and an individual and family’s quality of life. However, evidence that social work interventions improve patient, carer and family outcomes and experiences is relatively sparse.

Social work as a profession is vulnerable as it “lacks a conceptual framework for defining specifications of the profession’s outcomes in health care….and in outcomes measurement.” (Mullen, 2004, p. 79). When there is a framework and common language for outcomes, along with standardised measurements collected systematically that are retrievable (Proctor, Rosen, & Rhee, 2002; Hansen, Martin, Jones, & Pomeroy, 2015), social workers can evidence positive outcomes that are a direct result of their interventions with patients and families.

There is a paradigm shift in health care, with a move away from volume-based care, measured in terms of social work activity such as occasions of service or patient contacts, to measuring effective care and efficient performance of health services. This new paradigm is “value-based care” and demands that clinicians and services use data to evidence patient

outcomes. Information collected from patient reported outcome measures (PROMs) and patient reported experience measures (PREMs) provide evidence of value-based care. Thus, there is a focus in health care on outcomes. These new directions provide social workers with the means to demonstrate outcomes that are a direct result of social work interventions, in quantifiable terms. In the new era of “big data”, palliative care social workers need to understand how to effectively evidence their care. We will no longer be able to assert how integral we are to the palliative care team and that the work that we do makes a difference, without having the evidence to support it. One way to accurately determine the effectiveness of palliative care social work interventions is to measure changes in patient, carer and family outcomes.

We are fortunate in Australia to have a nationally and internationally

16

recognised system that enables clinicians to measure and benchmark outcomes. The Palliative Care Outcomes Collaboration (PCOC) provides palliative care clinicians with an assessment and clinical response framework. These assessment tools are used in routine practice at the point of care and are developed for the use of the multidisciplinary care team. The PCOC assessment framework enables clinicians to track and respond to changes in patient, carer and family needs and to measure the response to interventions in real time. There is a suite of five tools within the PCOC assessment framework that are all used in conjunction to provide a snapshot picture of patient and family needs.

The PCOC Phase views the patient and family as a unit of care and the phase is determined by their needs. When Phase is used in conjunction with the other tools, it provides a picture of when social work assessment and interventions may be required and whether the clinical response required is urgent, requires review and intervention or monitoring. The Phase enables social workers to triage their workload.

The PCOC Palliative Care Problem Severity Score (PCPSS) is a tool ideally suited to social work. The PCPSS is a clinician-rated tool and includes domains that measure psychological/spiritual and family/carer problems along with pain and other problems. Services use the PCPSS to trigger referrals to social work and social workers can also use the PCPSS to triage their workload.

Examples of using the PCPSS tool for psychological domains is identifying any potential issues with capacity and decision-making of the patient, existential distress or mental health issues and targeting interventions to address these. The family/carer domain of the PCPSS tool can identify when support is required if caregiver burden, family conflict or safeguarding of a vulnerable family member is indicated along with emotional or social support and practical issues around other legal, financial or housing problems.

The Symptom Assessment Sale (SAS) is a patient-reported distress tool and is a patient-reported outcome measure (PROM). Measuring distress rather than the level of severity of the symptom recognises that an individuals’ experience of physical symptoms has subjective, existential and multifactorial aspects. Although nurses predominantly use the SAS, social workers play a role in symptom management. For example, fatigue is reported by palliative care patients as one of the most distressing symptoms (PCOC, 2018). Distress from fatigue is commonly addressed by physiotherapists and occupational therapists through physiological or functional based interventions i.e. energy conservation, scheduling and pacing of activities. Social work has a unique role in alleviating the distress from fatigue. There is an absence in the literature of the “social” in psychosocial interventions for fatigue related distress. Social domains of fatigue include erosion of self-identity, inability to fulfil social roles and the impact of this on the integrity

Social workers can

evidence positive

outcomes that are

a direct result of

their interventions

with patients and

families.

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of the family unit. The concepts of social identity and social roles as contributing factors to fatigue related distress is often an area addressed through social work interventions, however we often do not articulate this directly in our assessment, interventions and documentation. Social workers can play a significant role in improving outcomes for distress related to fatigue and other symptoms such as distress from pain and breathing problems.

PCOC has two tools that measure patient function and performance: the Resource Utilisation Activities of Daily Living (RUG-ADL) and the Australian Modified Karnosky Performance Scale (AKPS). These tools can be used by members of the multidisplinary team to refer to social work when carer burden is increasing, when patient abilities to maintain their independence, continue with work or engage in leisure and other activities is reducing, when family conferences or advance care planning may be indicated and when preparation of family for terminal care, i.e. last days of life, is indicated.

The PCOC assessment tools provide data about patient and family needs and when social work interventions are indicated. Social workers need to become familiar with their data (PCOC assessments) and use critical thinking and knowledge translation skills to make optimal clinical decisions, using real-time information based on evidence. This will enable social workers to identify interventions that are efficacious or best practice models and are evidence based.

At the individual level, the PCOC assessment and clinical response framework provides social workers with the opportunity to directly link assessment, clinical management and outcomes to their interventions. In using patient reported outcome measures such as the SAS tool, social workers can also empower

patients in the management of their own care, prioritising what is important to them. At the service level, evidence of outcomes for patients and families from social work interventions provide services with invaluable information to inform service planning. Services may use their data to identify when social work interventions have prevented hospital presentations or contributed to reduced length of hospital admissions. Services can use this data to support business activities that aim to recruit or increase social work hours. At the systems level, social work data can provide insights on psychosocial outcomes in palliative care and outcomes of vulnerable population. This data can be used to inform planning for adequate ratios for social work workforce to patient populations, funding and policy.

Social work must embrace the opportunities that arise from health system transformation to evidence the contribution we make to patient, carer and family outcomes in palliative care. Measuring client change provides indicators of effective practice (Sheafor, 2011) and PCOC provides the means to do this.

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References

Hansen,A,Martin,E,Jones,B,&Pomeroy,E.(2015).Socialworkassessmentnotes.Acomprehensiveoutcomesbasedhospicedocumentationsystem.Health & Social Work,40(3):191-199.

Mullen,E.(2004).Outcomesmeasurement:Asocialworkframeworkforhealthandmentalhealthpolicyandpractice.Social Work Approaches in Health and Mental Health.US:TheHaworthPressInc.

PalliativeCareOutcomesCollaboration.(2018).Website:www.pcoc.org.au

Proctor,E,Rosen,A,&Rhee,C.(2002).Outcomesinsocialworkpractice.Journal of Social Work Research and Evaluation,3(2):109-125.

Sheafor,B.(2011).Measuringeffectivenessindirectsocialworkpractice.Revista de Asistenta Socialia,anulX,nr.:25-33.

Steketee,G.,Ross,A.,Wachman,M.(2017).Healthoutcomesandcostsofsocialworkservices.Asystematicreview.AJPH,107(53):S256-s266.

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Patricia McKinnon

Patriciagraduatedinmedicalsocialwork,practicedinhospitalsandcommunityhealth,publicandprivatesettings,cityandrural,inAustraliaandLondoninpalliativecareandbereavementsince1989.Shehaslecturedinpsychology,sociology,socialwork,palliativecareandbereavement.ShehasattendedandpresentedatpalliativecareconferencesinAustraliaandoverseas,andcurrentlyworksatSacredHeartPalliativeCare,StVincent’sHospital,Sydney.

ABOUT

THE AUTHOR:PSYCHOSOCIAL ANTECEDENTS IMPACTING ON

“SORRY BUSINESS” FOR INDIGENOUS PATIENTS

IN A PALLIATIVE CARE UNIT

Unresolved grief and loss issues in the histories of Aboriginal or Torres Strait Islander peoples is a recurring pattern in palliative care. Many have been admitted for terminal care, others for successive admissions for symptom control. In the psychosocial assessments which form part of the individualisation, “total care” philosophy and multidisciplinary team approach to care, emotionally and socially overwhelming experiences often appear to remain unaddressed and unresolved.

Early childhood family separations, absence of nurture, relationship complexities and breakdowns, children in care, educational deficits, poverty, addiction issues, history of incarceration, inadequate and insecure housing, youth suicide, deaths in custody and cultural dilution are recurring themes. The proliferation and compound nature of the experiences appears to combine often with chronic illness experiences, with absence of opportunity to resolve the complexities during life. How this build-up of sadness, loss of individual family connection and support combines with illness and impending death is a concern heightened at the end of life. An outcome of resolution of issues eludes the practitioner despite well practiced skills in anticipatory grief work (Rando, 2000).

A preventive approach and longitudinal view with progressive efforts to address unresolved issues as they arise and present themselves in the wider social systems is a major challenge, but raising awareness

of the overwhelming impact of cumulative loss calls for integration of care at an earlier intervention point.

Looking at the literature, there is much focus on access and delivery of palliative care to Indigenous communities. A national Indigenous palliative care study was completed in 2003 and related program implemented. Indigenous inclusion in social work tertiary education curriculums has been devised. Cultural identity and loss are discussed. A smattering is written on grief and sorrow. A community resource booklet by the Social Emotional Well Being team at Central Australian Aboriginal Congress has been produced. However, literature specific to pre-existing issues and the events is sparse.

Alongside this is the need for identification of resources and avenues to assist resolution of issues and respect for the expressed wishes of the patient. The integration of Aboriginal Liaison Officers has been

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a great boost to our understanding and cultural responsiveness at this very important time of life. Advocacy is needed to enable parents to visit or be visited in hospital by their children interstate, in care, in Justice Health with funding for release and travel for compassionate reasons. There needs to be the opportunity for involvement in appropriate rituals. Ritual and funding often do not synchronise. The Lands Council contribution is acknowledged.

A heightened awareness of Indigenous cultural experience is essential for good practice in palliative care. The message is to understand, address and open opportunities to alleviate the final burdens of compound and complicated grief, according to the individualised needs and wishes of Aboriginal and Torres Strait Islander patients and families. How indeed do we “close the gap” of emotional loss and resolution individually, institutionally, generationally?

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References

Rando,T.(2000).Clinical dimensions of anticipatory mourning: Theory and practice in working with the dying, their loved ones, and their caregivers.Champaign,IL:ResearchPress

Swan,P.(1998).Griefandhealth:TheIndigenouslegacy.InGrief Matters, Sept1998

Wanganeen,R.(2001).Spiritualhealingusinglossandgrief.InAboriginal and Islander Health Worker Journal, Vol25,No5,Sept/Oct2001

Wanganeen,R.(2011).Integratingpersonalandprofessionalexperiences–sevenphasestointegratinglossandgrief.InGrief Matters: The Australian Journal of Grief and Bereavement,14(3)78-88.

AgencyforClinicalInnovation(ACI)portalandresources:https://healthinfonet.ecu.edu.au/learn/health-system/palliative-care/

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Dr Jane Mowll

DrJaneMowllholdsaBSWandPhDinsocialworkandisaseniorlecturerintheSchoolofSocialSciencesattheUniversityofNSW,wheresheconvenestheMasterofCounsellingSocialWorkandBachelorofSocialWork(Hons)programs.SheisanAccreditedMentalHealthSocialWorkerandapractisingtherapist.Janehaspublishedanumberofarticlesfromherresearchonviewingthebodyandforensicimagesafteradeath,andhercurrentresearchprojectsalsofocusonexperiencesofgrief,andsupport,forindividualsandfamilies.

ABOUT

THE AUTHOR:SOCIAL WORK SUPPORT IN BEREAVEMENT

AND VIEWING THE BODY

Grief and loss after bereavement are common issues for social workers, yet there is little critical discussion on this topic in social work literature (Allan, 2009). In the broader grief field, theoretical understandings are dominated by a psychological and intrapersonal focus, often with little attention on the influences and impacts of people’s cultural and social contexts (Allan & Harms, 2010, p 73). Further, the concomitant focus on psychological interventions addressing symptoms of grief for individuals does not pay attention to the multiple ways in which bereaved families may need support in the immediate aftermath of the death. One such need is in the choice and support to see or not see the body of their family member or friend after the death.

Most research on viewing is in the field of perinatal death, where controversial findings from studies of 60 women after the still birth of their child cast doubt on the efficacy of seeing and/or holding the body of their dead infant for bereaved mothers (Hughes, Turton, Hopper & Evans, 2002; Turton et al., 2009). A systematic Cochrane review (Koopman et al., 2013), however, notes the methodological limitations of these studies. Subsequent research emphasises the meaning of viewing and holding for many, though not all, parents (Radestad, 2009) and, crucially, the need for sensitively provided choice and support (Koopman et al., 2013). Other than in perinatal death, there is a little research examining the experiences and meanings of viewing the body (Mowll, Lobb, & Wearing, 2016). In end-of-life care contexts, providing a chance to be with the body is seen as an extension of care for the

deceased and the family (Pattison, 2008). Parents in particular may want to have the chance, time and privacy to see and hold their child (Garstang et al., 2014). In palliative care it is also important to provide support to family members in preparing what to expect prior to the death as well as follow up after the death, to assist in understanding what happened and access bereavement support (Harrop et al., 2016).

Studies after traumatic or sudden death suggest that family members find benefit and meaning in seeing the body (Mowll et al., 2016; Drayton, 2013). A study of 64 bereaved family members (Mowll et al., 2016) found that seeing the body held profound meanings for some, allowing a chance to make the death real, to care for, talk to, touch, hug and spend time with the deceased person both with family and alone, and to help finally relinquish the physical body.

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For some, viewing was attributed as one of the most important and transformative acts in the aftermath of the death, helping adjust to grief in the wake of the loss. At the same time, seeing the body was not always important, and for a few carried aspects of regret and difficulties associated with seeing. Conversely, being prevented from seeing was also linked to regret, ruminative thoughts of “if only” and an on-going feeling of unreality about the death (Mowll et al., 2016). In keeping with other studies, an emphasis on providing choice, information to help choose and support emerged as key findings (Mowll et al., 2016).

Social workers play a key role in the provision of choice, information and support to view the body in diverse contexts including palliative care, emergency, perinatal, hospital ward and mortuaries www.palliativecarebridge.com.au/resources/viewing-the-body. Despite this practice experience, there has been limited research focussing on this role (Whelan & Gent, 2013). In addition to the need for choice, Whelan and Gent (2013) employ a single session framework for elucidating the helpful components of support for the family in viewing the body. This includes: managing the immediate situation of the family; explaining the medico-legal system; continuing assessment of, and supportive interaction with, the family; maintaining clear parameters; negotiating in relation to family needs in the system; and providing practical and psycho-social support (Whelan & Gent, 2013). Research

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also suggests concrete steps in providing support through the viewing process (Mowll, 2017). This includes: sensitive discussions with a family focus to discuss possibilities; give permissions; prepare the body prior to seeing; discuss the appearance with care and sensitivity; ascertain and meet the differing needs of family; and give time together, time alone and sufficient time with the body—within the parameters allowed by the system (Mowll 2017). A recent comprehensive review found that formal support, including from social workers, is noted as one of the most helpful activities for caregivers in coping with loss in palliative care (Hotslander et al., 2017). Social workers also have a unique set of skills in being able to provide sensitively worded choice, preparation, and support for families to see and care for the body of their deceased relative.

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References

Allan,J.(2009).Weavingtogetherthepersonalandthepoliticalinlossandgrief.InJAllan,LBriskman,&BPease(Eds.)Critical social work: Theories and practices for a socially just world,(2nded).AllenandUnwin,CrowsNest,NSW,Australia,pp.214-227

Allan,J&Harms,L.(2010).Powerandprejudice:Thinkingdifferentlyaboutgrief.Grief Matters: The Australian Journal of Grief and Bereavement, 13(3),72-75

Drayton,J.(2013).Bodies-in-life/bodies-in-death:Socialwork,coronialautopsiesandthebondsofidentity.British Journal of Social Work, 43(2),264–281

Garstang,Griffiths,&Sidebotham.(2014).Whatdobereavedparentswantfromprofessionalsafterthesuddendeathoftheirchild:Asystematicreviewoftheliterature.BMCPediatrics,14,269http://www.biomedcentral.com/1471-2431/14/269

Harrop,E,Morgan,F,Byrne,A,&Nelson,A.(2016).Itstillhauntsmewhetherwedidtherightthing:Aqualitativeanalysisoffreetextsurveydataonthebereavementexperiencesandsupportneedsoffamilycaregivers.BMCPalliativeCare, 15,92

Hughes,P,Turton,P,Hopper,E&Evans,CDH.(2002).Assessmentofguidelineforgoodpracticeinpsychosocialcareofmothersafterstillbirth:Acohortstudy.The Lancet, 360(13),114-118

Holtslander,L,Baxter,S,Mills,K,Bocking,S,Dadgostan,T,Duggleby,W,Duncan,V,Hudson,P,Ogunkorode,A,&Peacock,S.(2017).Honoringthevoicesofbereavedcaregivers:Ametasummaryofqualitativeresearch.BMCPalliativeCare,16,48

Koopmans,L,Wilson,T,Cacciatore,&J,Flenady,V.(2013).Support for mothers, fathers and families after perinatal death.CochraneDatabaseofSystematicReviews,Issue6.Art.No.:CD000452

Mowll,J,Lobb,E,&Wearing,M.(2016).Thetransformativemeaningsofviewingornotviewingthebodyaftersuddendeath.Death Studies,40,46–53

Mowll,J.(2017).Supportingfamilymemberstoviewthebodyafteraviolentorsuddendeath:Aroleforsocialwork.Journal of Social Work in End-of-Life & Palliative Care, 13(2-3),94-112

Pattison,N.(2008).Careofpatientswhohavedied.Nursing Standard, 22,42–48

Radestad,I,Surkan,PJ,Steineck,G,Cnattingius,S,Onelov,E,&Dickman,PW.(2009).Longtermoutcomesformotherswhohaveorhavenotheldtheirstillbornbaby. Midwifery, 25(4),422–429

Turton,P,Evans,C,&Hughes,P.(2009).Long-termpsychosocialsequelaeofstillbirth:PhaseIIofanestedcase-controlcohortstudy.Archives of Women’s Mental Health 2009, 12(1),35–41

Whelan,J,&Gent,H.(2013).Viewingsofdeceasedpersonsinahospitalmortuary:Criticalreflectionofsocialworkpractice.Australian Social Work, 66(1),130–144

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PALLIATIVE CARE SOCIAL WORKERS

CELEBRATED 20 YEARS AS A PRACTICE GROUP

IN 2016

On 4 May 2016 the founding members of the specialist palliative care social workers interest group gathered with current palliative care social workers to formally acknowledge their collaborative associations and combined achievements since 1996.

There was interest in the day from practitioners from services providing for palliative patients and families in Albury, the Alzheimer’s Association, Canteen, Calvary Healthcare, St Joseph’s Auburn, Concord Palliative Care, HammondCare Braeside and Greenwich, Illawarra, Lady Davidson, Mt Druitt, Prince of Wales Randwick, Sacred Heart, Slater & Gordon and an AASW representative.

The celebration was held at Sacred Heart Palliative Care with Associate Professor Richard Chye as guest speaker, reflecting on changes in palliative care over the last 20 years.

Memorabilia, minutes and publications were made available for perusal. Colourful posters jointly produced and presented at palliative care conferences were on display. Acknowledgments of particularly

24

significant contributions over the years were made.

Afternoon tea on the patio was a very vivacious picture of social interaction and professional exchange, expressing pride and an endorsing sense of collaborative achievement from simple beginnings.

The group was founded 7 May, 1996, with founding members Leith Cooper and Mary Clarke from Neringah, Janet Doube from Mona Vale, Maureen Sellars from Lady Davidson and Trish McKinnon, then employed at Greenwich Hospital, meeting at Macquarie Hospital. The meeting had been prompted by Trish McKinnon and Janet Doube discussing a particularly challenging case, and sharing a hope for a broader-based support for Palliative Care Social Workers in NSW in their daily practice issues, allowing collegiate discussion.

Over the twenty years the group continued to meet three to four times a year, with rotating venues, including Bankstown, Braeside, Bulli, Canterbury, Calvary, Greenwich, Lady Davidson, Lottie Stewart, Manly/Mona Vale, Neringah, Royal Prince Alfred, St Joseph’s Auburn, Sacred Heart, Sydney Adventist Hospital and Wolper Hospital.

Meetings usually included a program of information exchange, a clinical presentation, hospital tour and current issues discussion, aiming to enhance our knowledge and professional development.

Membership of the group broadened to include country practitioners whereby one meeting each year was held at a regional/country venue.

This took the group to Berry, Bulli, Canberra, Camden, Liverpool, Maitland, Newcastle, Port Kembla broadening our perspectives, combining our knowledge and becoming an integrated group.

Our numbers grew from five to over fifty in the first five years. The group now has over one hundred members, and although remaining a New South Wales group, also include social workers from across the country. Quarterly meetings are well supported, always with robust discussion.

Topics focused on over the years have included Bereavement, Brief Therapy, Complementary Therapies, Community Palliative Care, Social Work Competencies (including international liaison with Canadian Wendy Wainwright), Canteen, Cancer Council programs, Children of dying parents, Dementia, Drug and Alcohol patients/carers, Funerals – creative options, HIV/AIDS, Innovation in Palliative Care, International Palliative Care, Jewish Death and Mourning Traditions, Mental Health patients in palliative care, Mesothelioma/Asbestos, Play Therapy for Dying Children, Palliative Care Physicians perspectives, Reflective Practice (Jan Fook), St Christopher’s Hospice (Lois Pollak), NSW Statewide Centre for Improvment of Palliative Care, Agency for Clinical Innovation, Wholistic Care and writing for Publication (Prof. Karen Healy).

The group made a submission to the Senate Enquiry into Palliative Care 2012, coordinated by Jenny Downes of Braeside Hospital.

Education workshops have been held annually since 2002 for social workers working in end of life care. In recent years this has included linking with PEPA, which has allowed expansion NSW-wide, regularly gathered 100 attendees.

Inspired by the group, and also by working parties, members have collectively and individually presented at PCNSW, PCA and international conferences.

The group’s membership has actively contributed to research on topics that including relocation from a palliative care unit to a residential care facility, Key Performance Indicators for Palliative Social Workers (over 5 sites), adolescent spirituality and hope and hopelessness.

Group members have joined forces in publishing, including a chapter in the first Oxford Textbook of Palliative Social Work, along with an article in the European Journal of Palliative Care regarding the group’s collaborative research into Key Performance Indicators.

For over twenty years the group has been a source of inspiration, collaboration, professional development, support and mentoring for social workers in palliative care. The group continues to grow in numbers and strength, and aims to continue to foster the development of palliative care social work.

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