Bereavement: A better experience

Initiatives and experiences in relation to bereavement at St. Luke’s Cheshire Hospice

Kathleen VandenbergheFamily Support and Counselling (FSC)

fsc@stlukes-hospice.co.uk

Topics Overview of Family Support and Counselling

Remit by looking at the service context: Hospice, Health care sector, Society, Clients

Services

Pressures / challenges / questions

FSC 2016: Stop and think – what thoughts and experiences are shaping our service development?

Hospice clients and care

Patients Relatives (pre- and

post bereaveme

nt)

Progressive life-

limiting illness

Family orientated

All ages

All relationships

All cultural and spiritual

background

St. Luke’s Hospice : community orientated

In-house

Care homes

Home visits

Schools

Response to need:

Dementia

Survivorship

Homelessness

Hospice commitment to holistic incl psychological care

100 hours paid counselling + 35

volunteers / avoid waiting list

Need based counselling:

450 new clients/year

duration flexible

Society

Bereavement is badly

supported

Complex and stressful life circum-

stances

Health Care sector

NHS: Long term support? Mental Health

support?

Charities: local and variable funding

CounsellingStudents searching for

placements

Professional volunteering

Response to changing client need - Distress

Work with children

and young people can

mean:

Co-operation with Social

Services

Self-harm

Bullying

- Other illnesses

Alcohol related deaths

Sudden death: heart

attack, stroke

- Young people with cancer

Impact on young families (children and

partners)

Parents surviving adult children

FSC services Loss and Grief support to patients and those close to

them before the death

One to one counselling

Participation in Hospice group support to carers, cancer survivors, ...

Bereavement support

One to one counselling

Monthly Adult Bereavement Support Group

Monthly Children’s Bereavement Support Group -Phoenix

A range of questions / tensions• Motivate families to

contact us earlier?

• Organise children’s pre-bereavement group?

• Offer online support for teenagers and adults?

Service development

• Skilled to support:

• dementia patients?

• mental health problems?

• People suffering abuse?

• Alcohol/drug users?

• Working with translators?

• Couples and family units?

Knowledge and skill

• With increasing referrals, can we sustain

• Home visits?

• No waiting list?

• Room availability?

• Better co-ordination of in-house support

Capacity

• Is it fair not to support bereavement following suicide, murder, accidents?

• What does it entail to support Homeless people?

• When is counselling befriending?

Service boundaries

• What does it mean when clients seem unaware of referral?

• How do we keep up to date with changes in external services?

• When is bereavement mis-used to access support?

Collaboration

• Confidentiality and IT systems?

• Are funds used effectively?

• Is work load unfair?

• Is professional volunteering ethical?

• Unsupported out of area clients?

Ethics

Summarizing the questions

When to offer more?

When to offer less?

Where is or should be our boundary?

Should we change our boundary?

Where to draw the line?

Thoughts in relation to service development1. More is better ... Finding the funding to provide

required services, staffing and training

2. Critical is better ... Question appropriateness of referrals and invest in options to refer-on

3. Protect boundaries ... Not collude with bereavement ‘being used’ to offer more general life support - Not feeling responsible for unattended needs outside our catchment area

4. Curtail ‘giving’ attitude

Offering less home visits may result in clients taking responsibility for their own transport arrangements?

Less sessions may result in more focused working?

Responding less quickly may result in less DNA’s or cancellations?

Underlying principle: SPECIALISED IS BETTER Focused on:

Trained competence

The complexity of problems

Specificity of client groups

Service accessed rather than offered

We are in ‘specialised’ mode both in our strategies to extend and limit our support

Impact and meaning of our specialised outlook: 2 observations

When listening to our team discussion

Shift in mind-set and language

from seeing people to not seeing people

from supporting to service

From being to doing

From listening to assessing

From holding to pushing

Tension ... road to burnout?

Could I say ‘no’ to my present clients?

Sharon who lost her second husband although she is only 40 with 2 young children and a full time job – she is just going into her 3rd year of 2-3 weekly bereavement counselling –the only place and time where somebody witnesses the rawness of her grief.

Karen who I see at her house is often under the influence of alcohol; the grip she had on it seems gone now her mother has died.

Dan lives just outside our catchment area and would like his 8 year old daughter to attend the childrens’ bereavement support group...

Realities ignored...The reality of our clients’ life-world:

so many people don’t fit the practical, efficient, professional boundaries that we conjure up with our ‘specialist’ hat on. Life is messy – bereavement and mourning is potentially long, chaotic, lonely and debilitating.

The reality of health care practitioners’ life-world:

Inspired caring comes from head, hand and heart care (Galvin and Todres 2007) – Specialised care focuses on head and hand and leaves the door open to neglect the heart – We can be ‘specialised’ without being ‘integrated’ or ‘whole’ in our caring.

What does it mean to add an ‘un-specialised’ dimension?Specialised caring Un-specialised caring

Trained competence

Focused on higher level of complexity

Specific client group

Accessed rather than offered

Spontaneous humanity

Valuing attending to our basic needs

Remembering a label does not capture a person

Emerges in a committed relationship

Extra thought to consider in relation to service development

5. Grounding specialised caring in un-specialised caring values the humanity of all involved

Adding an ‘un-specialised’ dimension to our ‘specialised’ caring, what does it mean for how we deal withour question: “where to draw the line?”

Being boundary aware does not mean that we need to be boundary led – we can prioritise ‘being people led’ over ‘being boundary led’.

Applying boundaries in response to individual contexts and needs may be not a weakness or error but a strength and moral decision – a compassionate professional practice.

Consider that boundaries may be at their best when seen as places rather than lines.

In addition to asking the question “where to draw the line”,we must also ask “what type of line do we draw”?

Metaphorically...Applying service boundaries like walking on the edge of

sea and sand...

What does it mean for our work in context Organisation: Compassionate professional practice

needs to be secured with compassionate management that trusts, supports and enables practitioners’ heart-felt decisions.

Health care sector: More verbal communication with neighbouring services and referrers and ‘share’ the care for ‘new’ or ‘less specified’ client groups.

Society: paralleling not contrasting the advocacy for holistic and compassionate community based public health support – fighting fragmentation, offering humanity.

Bibliography Dahlberg, K., Todres, L. and Galvin, K., 2009. Lifeworld-led healthcare

is more than patient-led care: an existential view of well-being. Med Health Care and Philos, 2009 (12), 265-271.

Galvin, K. and Todres, L., 2007. The Creativity of 'Unspecialization': A contemplative Direction for Integrative Scholarly Practice. Phenomenology & Practice, 1 (1), 31-46.

Hanlon, P., Carlisle, S., Hannah, M., Lyon, A. and Reilly, D., 2012. A perspective on the future public health: An integrative and ecological framework. Perspectives in Public Health, 132 (6), 313-319.

Wegleitner, K., Heimerl, K. and Kellehear, A. (Eds.), 2016. Compassionate Communities: Case studies from Britain and Europe. NY: Routledge.