ST/AON

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What Matters to Me

Evaluation Findings

Research carried out by Dr. Trish Walsh and Dr. Sarah Donnelly

Trinity College Dublin

1 living to the end

Methodology

Mixed method approach for research in four sites:

• Review of evaluation sheets

• Survey via postal questionnaire

• Interviews with Director of Nursing/Senior Manager in

each site

• Focus group with participants in each site

Summary of Findings

•Same day evaluation sheets

(153)

• On a four point scale (poor-fair-

good-excellent) 130 of

participants rated it as excellent

22 rated it as good and 1 rated

it as fair

•Questionnaires

3 – 12 months after workshop

•Respondents reported increased

confidence in discussing EoLC

•Respondents reported being

more open to broaching EoL with

residents

•Most respondents said the

current format of the workshop

should not be changed

Summary of Findings

Focus Group discussions

3 – 7 months after workshop

•Workshops reported to have

generated a lot of constructive

discussion about end of life care

afterwards among staff

•Staff self reported changed

attitudes, increased confidence in

engaging with residents and

families, and a sense of

competence embracing this part

of their job

“I’m more open to having the

conversation, it doesn’t

frighten me any more”

Focus group cont’d Changes in practice

• Making time for residents

“You can give them a bit more

time sometimes. I mean just to

make time for them. Maybe she

was frightened and needed

company”

• Increased and more detailed

EoLC planning and

documentation was reported

• Increased use of single/private

rooms

• Increased use of HfH resources

e.g. Spiral symbol

• Emphasis on the ‘whole team

approach’

“it has made everyone appreciate

that everybody has a role to play”

Summary findings Interviews with Managers • Overall feedback very positive

• Positive aspects were that it

was on-site, inclusive of all staff

groups, skills/expertise of

facilitators, external facilitators.

•Increased planning and

documentation with decreased

transfer to acute hospital prior to

death

“in the past there was this fear…

to run to get them to the hospital

but now there is much more

planning and now we know in

advance and it is

documented…before you very

much listened to the family but

now you would listen to the

patient and the patient’s wishes

matter most”

Interviews with managers “We have more of an emphasis

on trying to find a single room for

people whereas before it was

very difficult to keep a room in

particular…now we have more of

an emphasis on trying to think

ahead and if there is someone

who is likely to pass away, we will

try to keep a room. There’s a lot

more thought around it”

• Increased clarity about decision

making responsibility was noted

• Increased confidence in staff re.

communication

• Increased pre-planning at MDT

level and GP putting more

emphasis on pre-discussions

Other changes identified following

training

• Establishment of working group to develop EoL policy

and adapt the resource folder

• Increased awareness of EoL issues

• New annual memorial services

• Attendance at funeral

• Sending of sympathy card

• Use of handover bags

Future training

needs/Recommendations for change

• Staff release and budget constraints will remain an issue

• When the option of on line training was discussed this was not enthusiastically received as the format of the WMTM training was identified as having a major impact

• Ideas for follow up input/modules were

- cross cultural work

- personal development modules

- bringing in ‘real people’ to talk about their

experiences

- access the opinion of residents/older people

themselves

- update or summary of Irish research on death and dying

The Journey Through Death and Dying

Families’ Experiences of End-of-Life Care in Private Nursing Homes

Dr. Mel Duffy and Dr.Eileen Courtney

Dublin City University

When does End-of-Life Care begin?

11 living to the end

People “are approaching the end of life when it is thought that they will die within

the next 12 months, and includes those who may die in a few days or hours”

GMC, UK 2010

EoLC is a continuum of palliative care and usually used to describe the care that

is offered when death is imminent, and when life expectancy is limited to a short

number of days, hours or less

IAPC 2012

• In the context of nursing home care if clinicians try to

identify an exact time at which a resident is dying then

the opportunity for palliation is often missed and

residents and families are not receiving optimal

palliative care (Johnson 2005)

• In the case of residents with dementia residents in the

advanced stages may experience poor end of life care

because they are not perceived to have a terminal

illness (Sampson et al 2011)

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Factors influencing End of Life Care in

Nursing Homes • Culture and Philosophy

• Education and training

• Staffing levels

• Attitudes of staff

• Teamwork

• Collaborative decision making

• Communication (particularly given the unpredictable trajectory)

Avoiding euphemisms – talk of mood and appetite

Avoidance/fear of blame

Lack of preparation

• Support to families

View as co-providers and co-recipients of care (Simonic et al 2012)

Apply principles of ACP (McConville 2011) which allows for discussion of

goals of care

Transition to Nursing Home

• Preceded often by a lengthy and sometimes painful

journey coming to terms with the need for NH care for a relative

• Family may have tried many strategies to maintain their loved one

in their own home

• Some relatives may feel they are breaking a promise they made

• The process of relinquishing care is similar to a crisis process:

beginning with a turning point, followed by a coping phase and

finally the outcome of the process (Graneheim et al 2014)

‘She said to me “I looked after you so much, please don’t leave me

here” and I will never, ever, ever forget that.’

‘I always felt he thought I let him down. Which maybe he did but then

we’d always talk about things before we did them and we didn’t

talk about this’

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Choosing a Nursing Home

Critical factors

Location

Open access visiting policy

A good reputation

Attitudes of staff

Fit between the environment and their loved one

e.g. outdoors person, sociable person.

“You know when you walk in – is it more nursing than it is a home –

and then that ethos runs across everything it does”

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Transition and communication • The difference between admitting that you can no

longer care for your loved one and informing your

loved one of this fact is immense

• Families feel unable to face the conversation and felt it was better not to

inform their relative for fear of upsetting him/her

• The emotional turmoil of the decision for relatives to accept nursing

home care continues long after the decision has been made

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“I told him he was

going to a type of

hospital where

they were going to

sort out his chest”

“I told her she

was going to

a holiday

home”

“I think we said he was

going in for respite but I

think he knew he wasn’t.

He was leaving his home

of sixty years”.

Settling In

• Hyper-vigilance/ Making sure it’s all ok

Feel the need to visit any time

Observe interaction

Notice both the physical care of their loved one

and they way people communicate

Emphasis on the importance of dignity

• Relaxing

Feeling they had found a ‘home from home’

Importance of the ‘warmth’ of the environment, suggestive of comfort and

security.

“all the staff welcomed you, everybody said “hello”, whether it was the chef or the

cleaners, we all knew each other”

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Caring for Families

• While relatives encounters were driven by the needs of their loved

one, many remarked on the personal support they themselves

received

• Experience of inclusivity and encouragement to be involved in

care

• Support where necessary if a visit became difficult

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Planning for the Future

• Even where discussions had taken place some relatives were

unaware of a care plan

“I would have to say I wasn’t conscious of a care plan.

Resuscitation obviously yes you know with the standard you

know “do you want to resus or do you not want to resus etc?”and

we signed forms in that regard quite regularly.”

• Of the 22 families participating, only two reported that end-of-life

care had been discussed with their relative beforehand. (In the

acute hospital much earlier in trajectory)

The remaining families who participated in the study indicated that

they made the decisions on end-of-life care.

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“I was very aware that she had not made a will and that you know,

her expressions of what she wanted is something we should do

and as much as I knew all that I chickened out of the conversation.

And you know I chickened out because having that conversation

when she was able to speak was effectively starting off

conversation by saying well you know you are going to die soon

so get your house in order. And it appeared to me that she never

wanted to have that conversation. I couldn’t bring myself to have

it. Everybody talks about capacity and the difference in talking to

people and all the rest, in the real world it is very, very different to

have to sit down and have that conversation with somebody and

say we both know what we understand by having that

conversation which is you know you are going to die. I just

couldn’t bring myself, partly because I just felt she never wanted to

have that conversation”

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Family may struggle with ‘conversations’

And yet it may be left to family

“well it would have started I suppose in terms of end-of-life discussion

when I brought her into the nursing home originally I had said that if

at all possible I would like her to avoid X hospital because we had a

couple of experiences that in which she got very confused and very

disorientated so if at all possible I asked them if they could care for

her in the nursing home you know. And I also signed something at

that stage about palliative care you know that didn’t want to end to

the extraordinary means. In relation to her care so I signed something

very early on”

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‘Embattled advocacy’

Some relatives described decisions not being followed through on.

H describes her loved one being prescribed antibiotics despite

the fact a care plan was in place which indicated that no

aggressive treatment should be given. When she brought this to

the attention of the nursing staff the antibiotic was stopped

immediately. It was the reaction of staff to her request that lead her

to feel that she was being judged and forced to justify her actions:

“one of the staff came in and said to me oh I believe you are not

having J [her husband’s name] treated anymore? You are not

having him on antibiotics anymore…..”

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H and her husband had spoken about her husband’s illness and had a clear plan of how his life would progress. This had also been discussed and agreed with GP. The plan did not always work when the doctor for the nursing home was away and an alternative doctor made decisions which did not adhere to the care plan exposing poor communication between the nursing home and the on call G.P.

H found it difficult to advocate on her husbands behalf and felt she was viewed as the ‘bad wife’ not caring for her husband, while in reality she was adhering to his wishes even when they were difficult.

What the stories tell us • ACP essential for family

• Clarity about what an EoL care plan actually involves

• Clarity about decision making responsibility v inclusivity and advocacy

• Clarity re. language and terminology and family understanding

• Awareness of family dynamics

• Collaboration in the decision making process

• Family needing to feel heard/part of the process

• The need to prepare and make sure family know what

is happening

“we didn’t realise that he was as bad as he was”

• Enabling family to be present

“I would have to say they were equally concerned

about myself and my sister as they were for my father.

My sister chose because she had been away for so

long to stay with my father each evening. They looked

after her. They fed her. I would have to say the care

was just superb and that ran for three weeks like you

know because he was a stubborn old man you know”

• Family’s wish for peaceful death without pain and

suffering

“Oh they were so good they really were so

unbelievably good down there and you know every one

of us said the same thing… and they explained

everything along every step of the way and then the

time came to give her the morphine and they called us

in and they told us you know this was, this was what

was going to happen. But she had her whole family

around her for 3 weeks. It wouldn’t have happened at

home….. we knew that if we needed someone we just

had to ring the bell and they were there and they

weren’t intrusive. You know. You couldn’t say enough

... as far as we are concerned she died in her own bed

at home. She was relaxed.”

Care after Death • The importance of dignified care after death

“she was brought to the funeral home and then she

was brought back to G and they were so good and that

to the family and so respectful of her when she did die

and that. She was laid out in the special room that they

have there and that and even on the morning that she

was going to the church was absolutely beautiful

because they did a guard of honour and sang. It was

lovely and then some of the staff came to the funeral

and that.”

• The importance of family collecting belongings in a way

that suits them

Living without the nursing home

• Family may feel the loss of the supportive relationships formed with staff

“I found it a huge part of my life had gone because I had gone up there every day. Well probably 6 to 7 days a week for 2 years except for an odd break and I became I knew everybody….It was like a big family that they sort of put their arms around to and suddenly that was gone”

Participants identified how helpful it was to return for a memorial service as a further step in coming to terms with their loss

A Good Death A reflection on Ombudsman Complaints about

End of Life Care in Irish Hospitals

Communication

Patient Autonomy

Specialist

Palliative

Care

Support for Family

and Friends

Returning the

Deceased

Person’s

Belongings

Managing

Complaints

Communication • Misunderstanding diagnosis

• Withholding critical information

“As a family we should have been given the truth that would have allowed us in the last few weeks of her life to support and assist her in coming to terms with her prognosis. Instead we were trying to get her to eat, make her stronger and giving her hope.”

• Respect the persons right to share their diagnosis and prognosis with others.

• Lack of understanding of DNR decisions

- routine terminology (comfort measures only/peaceful

measures only)

- what the decision entails

- decision making responsibility (signing of forms)

- confusion re. decision making rights

Patient Autonomy

• Respecting patients wishes

• Conflict between patient’s rights and family wishes

• Aim for open dialogue and early resolution of any conflicts