Dr Sarah Yeun-Sim Jeong

Master of Nursing (Adv Prac) Program Convenor

School of Nursing & Midwifery

University of Newcastle Australia

+ 61 2 4349 4535

Sarah.Jeong@newcastle.edu.au

Advance Care Planning (ACP) in Residential Aged Care Facilities (RACFs): The experiences of residents, families, and nursing staff

• Newcastle• Central Coast –

Gosford, Wyong and Ourimbah

• Port Macquarie

Overview

•Background•What are Advance Care Planning (ACP) and Advance Care Directives (ACD)?•ACP Program and use of ACDs in RACFs•Aims of the research •Research questions•Research settings •Research methods •Findings

Background

• Natural vs Medicalised death• Prolonging Life or Death• Postcardiac Arrest Syndrome (PCAS)• Quantity vs Quality• http://theladyandthereaper.com/

Advance Care Directives (ACDs)

“Statements made by a mentally competent adult stating how they wish to be treated should they, at some stage in the future, lose mental capacity” (Stewart & Bowker, 1998, p. 151)

Advance Care Planning (ACP)

“the process of preparing for likely scenarios near the end-of-life (EOL) that usually includes assessment of, and dialogue about a person’s understanding of their medical history and condition, values, preferences, and personal and family resources” (NSW Health, 2004, p. 1).

The elements of ACP

• The written ACDs (or Plan of Treatment: POT)

• The appointment of a substitute decision-maker

ACP and ACDs in Australia

• Variations in existing legislation providing for ACD: Tasmania, Vic, ACT, NT, no legislation in NSW, WA (Consent to Medical Treatment Act 2008), (vs Patient Self-Determination Act 1991 in USA): Power of Attorney, Enduring Power of Attorney, Enduring Guardian, Next of Kin, Person Responsible

• Variations in End-of-life decision making process• Terminology (Advance Planning (AP), Advance Medical

Planning (AMP), Advance Care Directives (ACDs), Advance Health Directives (AHDs), Advance Medical Directives (AMDs), Advance Care Planning (ACP) and Advance Directives (ADs)

ACP and ACDs in Australia continues

• Prevalence of ACDs: 0.2% in Residential care (Nair et al.,

2000 ), 0.05% in one general practice (Hawkins & Cartwright,

2000), 1 out of 40 (2.5%) patients in cardiac rehabilitation programs (Mador, 2001)

• ACDs discussion rates (1-29%): significant lack of public awareness (Taylor & Cameron, 2002)

• Myths about ACDs (over/under treatment, DNR, palliative order, euthanasia, etc)

• RPCP in NSW (JHH), QLD (The Townsville), SA (The Queen Elizabeth), Vic (Austin Health)

• Few research

ACP Program and the use of ACDs in RACFs

• A program set up in 2001 for residents aimed at improving their care by educating about dementia, encouraging ACP and the use of ACDs

• The program manager: a Clinical Nurse Consultant (CNC)

Aims of the research

• Investigate how the ACP Program and the use

of ACDs are implemented in RACFs

• Investigate the outcomes and experiences of people involved in ACP and ACDs including residents, families, and nursing staff in RACFs

• To determine the extent of nursing participation and the scope and nature of opportunities for nurses in ACP and the use of ACDs

Research settings

• 3 nursing homes that provide older

people with both high and low residential care services

• Receive ACP Program by the CNC from the AHS• Represent the characteristics of general older

people population

Research methods

• Document analysis re ACP and ACDs and

demographic information pertaining to residents• Participant observation: • -Part 1: observation of the roles and functions of

the CNC• -Part 2: observation of residents, family members,

and RNs in relation to ACP and ACDs • Field notes• Interviews with 3 residents, 11 families, and 13

RNs

Ethical considerations

• Ethics approval from the University of Newcastle and the Area Health Service

Mr T

Case conference with# PR/EG/PG# RNs# GP# DON# CNC# Specialist# Other

Referral to # Neuro-Psycho-Geriatrician# Psychologist

Other services# Counselling # Conflict resolution#

Appoint PR/EG/PG

# Develop ACDs/POT/Care protocol# Complete care plan# Communicate to staff and others# Review currency, competency, specificity, witness # Implement

6/12 regular review or following an ‘event’

# Value Clarification# Define tolerable/Intolerable situation# Family discussion# Consultation with religious person

Initial assessment# MMSE# GDS

Referral from GP, Geriatrician, Specialist, DON, NUM, Nr in ED, Resident

ACP Process Diagram

Figure 1. Conceptual Framework for Implementation of

Advance Care Planning

THROUGHPUTOUTPUT

FEEDBACK

2.2 Documentation

2.4 Discussion

2.5 In-service education2.6 Multidisciplinary Consultation

2.7 Communication2.8 Law and Ethics

2.9 Timing of initiation2.10 Obstacles/Difficulties

3.1 Documentation of ACD/POT

3.2 Autonomy for residents & clear directions for nursing staff

3.3 Person-centred care

3.4 Dying with dignity

3.5 Change of culture & attitudes about dying and death

INPUT

1.1 Organisational policy & manual

1.2 Department of Health Guidelines

1.3 Psychological catalyst

1.4 Medical catalyst

1.5 The CNC

2.1 Guardianship Board

2.3 Case conference

1.5 CNC (expert nurse)

‘She has been like a white light’.‘We need to clone her’.

2.4 Discussion‘Discussion is about giving people choice, full

information, and counselling them’.

‘Discussion should promote conversation and explore possibilities’.

2.5 In-service education‘In-service education about ACP and ACD enlightened older people, families, nursing staff, GPs, ambulance officers, hospital staff and etc’.

2.6 Multidisciplinary consultationGPs, palliative care team, PACS team, other CNCs,

psychologist, psycho-geriatrician, geriatrician, locums, and etc.

‘They would have had to go to hospital if there was no multidisciplinary team’.

3.1 Documentation of ACD/POT

‘No hospitalisation and no CPR because it doesn’t do good, there is no benefit, no dignity’.‘Hospital equivalent care in the facility’‘Palliative care and beyond’‘no tube feeding’ or ‘unable to decide at current’, or ‘open for discussion as necessary’

3.2 Autonomy for residents and clear directions for nursing staff

‘It gave them back the control and gave us clear direction of what to do’.‘It (ACD) is a guide’.

3.3 Person-Centred Care (PCC)

‘What we do is an absolutely person-centred care’.

‘ACP is a process that ensures the person and/or the family have been given the opportunity to express why they want or do not want a treatment, what life could mean to them with/without the treatment and how it could affect them not only at the functional level but also at the psychogical and spiritual levels within the person. The reasons, values, concerns, worries and meanings expressed were then reflected in the ACDs/POT, which are consistent with a person-centred approach’.

‘Exactly what you want is what we will do’.

3.4 Dying with dignity

‘It is a dignified way to go’.‘They retain the dignity and autonomy’.

3.5 Change of culture and attitudes toward discussing dying and death

• Dispel myths/misconception• Having discussion• Impact of past experience with dying and death• Impact of current experience with ACP

‘I started thinking about end-of-life and talked to my family’.

‘We want to discuss our choices’.

‘Discussion, discussion, discussion!!!’

Figure 2. Conceptual framework for experience of Residents,

Family members, and RNs with ACP

JustifyingReasoning outRationalising

ACP

Res

FM RN

TRANSITION

PRE-TRANSITION

•Guilt (Giving up)•Discomfort/ Uncomfortable•Broken heart/SadDifficult/HardAwfulStupidCruelBurdensomeAbusive ConfrontingAngryUnreasonable Resentful

POST-TRANSITION

•AcceptanceConfidentSatisfactionNo regretReliefComfortableSurrenderHappyReassurancePositivePleased

INHIBITING• ResidentsFamily membersRNs

ENHANCING• ResidentsFamily membersRNs

FACTORS

Pre-transition

• It was difficult but I, once again I think it’s the reality of it. For what? ... (thinking and sighing) … a little bit difficult I suppose. The main thing that went through my mind was, I want her at peace and … //… before I made the decision she (the geriatrician) said ‘You have to let go’. I said ‘I know that, I know, I know’ and I do know that … but it’s just difficult (swallowing her tears), extremely difficult to make but in reality you have to make them (ACDs), someone has got to do it ... //… she’s ... it breaks our heart to see her the way she is. … //… You’ve got to take the responsibility and do it. It is not something that you take lightly. It breaks … my heart (crying) … to make them, but in all, all facts, you know, there’s no future (FM 11: Trish).

justification, rationalisation, reasoning out

• Well see, I don’t feel so much like that (guilt) anymore because I’ve rationalised it so…. It is still there, you still have that in the back of your mind but ... I am much more comfortable with it, you know, than I was at first. I was very uncomfortable for some time, you know, very uncomfortable about it ... well for that reason, I thought I had given up. … well as we said before, you know, you feel like you’ve given up and just giving your mum away, you know. That’s not the case really when you, when you go through it, when you rationalise it in your mind. Well just, I think, bloody same thing so like what I was doing was just no good. I just thought well, as I said, I don’t think I would want to live in that situation (FM 16: Ray).

Table 1. Factors influencing on the TransitionEnhancing Factors Inhibiting Factors

Res It’s just me. (Essence of Being)

My right, my responsibility (Autonomy)

I had a good life. Use the resources better (Transcendence)

Religious belief

Why prolong? No point!

Difficult to understand medical aspects of treatment options

Where to draw the line

Fear of my wish not being followed up and not being heard

What family want

FM Mum/Dad had a good life. Use the resources better. (Transcendence)

What is the point? (no QOL, no dignity)

It helps that I can revoke it.

The involvement of hospital care team (PACS and Palliative care) in ACP was good.

Not for me but for mum/dad.

Back-ups from other family members and nurses.

The impact of past experience with dying and death.

I wouldn't like it to myself.

Lack of explanation

No back-ups

Guilt (giving up)

Not PCC

Lack of family involvement in care

Not being followed by family member (family in denial)

RNs It is their sense of who they are.

It’s not euthanasia.

Giving them choices & control (Autonomy)

Promote dignity and comfort

Person centred care (PCC)

Respecting wishes

Back-ups from Family members and other nursing staff

Providing reassurance to the Residents and Family members

The involvement of hospital care team

Helping them to be essence of being

Lack of discussion

Not being followed by Family members (family in demand/conflict)

Culture of ‘do everything’

Culture of ‘don’t go there’

Enhancing factors‘Essence of Being’: Continuity of self entity

(Atchley, 1987; 1989; 2001)

• ‘It’s just me’.• I was always like that kind of a person, it is my nature,

always has been. • So that is me. I think it is self respect myself. • It is their sense of who they are and the meaning of

their life and what would be important to them at the end of their life and maybe after they’ve gone.

• This is the way she is.• Mum/dad/aunt/sister wouldn’t have wanted to live like

that.

Continuity of self entity (Atchley, 1987; 1989; 2001)

• internal structure• external structure• goal setting • maintaining adaptive capacity

Gerotranscendence: Transcendence (Tornstam, 1994; 1997; 2000)

• I’ve had a good life, I am ready. Use the resources better.

• I like to be useful, being useful… means a lot to me.• I am ready to go. I have had a good go. • Dad and mum have had an extraordinary good life. • Mum/dad/aunt had a good life.• What is the point? (surrender)• I can see no point, absolutely no point.

Gerotranscendence: Transcendence (Tornstam, 1994; 1997; 2000)

• reflect and explore (introspected) their mind, feelings, thoughts and views on themselves, significant others, life, and community as a whole (turning inward) during ACP process.

• They believed that they had a good life (life satisfaction) and rendered resources for better use (altruistic, giving life).

• It was natural for them to surrender themselves to others when they did not see any point in prolonging life any longer than they wanted (surrendering ego and going beyond the self ).

Autonomy in social context: ‘My right, my responsibility but we all need back-ups’.

• I should be responsible for making my own decisions, I do have the right but I have the responsibility as well.

• I made it under my own decision • I want to have all controls of my faculties•

• But we all need back-ups. (Older person – Family member – other family member – nurses – GPs)

• This is my decision and dad’s, not just me alone. He’s agreed with me.

Utmost endeavour and ultimate hope

• I can change it. • It doesn’t have to be set in, in rock and concrete, it

can change over time as the needs change. • They can tear it up, they can revoke it. • The hospital hasn’t given up on me.• There was a special team that did that, it wasn’t just

nursing home staff (Palliative care, PACS and other)• The involvement of hospital care teams in ACP was

the utmost endeavour and the ultimate hope was that I can revoke it

Inhibiting factorsWe don’t understand the readings, so talk to

us.

It is still hard to come to grips with. The books I have read haven’t been as descriptive of what I am to expect (FM 19: Laura).

I think there was too much also in there that, the medical terminology and I am not a medical person. Well there wasn’t that much (that I understood), it was about pulmonary this and coronary that… it is all right if you know exactly. I mean I knew it was to do with the heart and everything but I’m not an expert, the specialists are. … //… Some of the experiences with the people probably, I don’t know. I thought ‘Oh we are not in that position’ you know (Res 18: Jill).

I am worried that I won’t be left alone

• A lot of people (families) at the moment may be prolonging the life because of their own issues like guilt or … emotions. Everyone feels I don’t want to let you go you know but that’s what they (families) want. And that is very selfish. That’s what worries me. And … Maltreated ... I am worried that I won’t be left alone. I am worried that there will be people fussing over me and all that sort of thing… but I hope it’s true. I hope it all comes true. (Res 21: Morton).

‘Culture of do everything’

• Well I think a lot of, a lot of the referrals that come to me are because families are so feral. Families are really difficult, they’re seen as a problem, they are demanding. (The staff say) well, I don’t think this resident would want half of what we are doing but their family is just demanding all this stuff. … //… Maybe that’s how that family resolve that the person had a good death, because they can then say at the funeral, you know, ‘Well they did everything they could’ … //… if they are going to funerals I suppose, in hearing, family member saying ‘Well, we did everything we could’ and like ‘oh he’s a good son, he did everything for his mother’. Maybe that’s what they live with, like well you’ve got to do everything you can because that’s your job, that’s what’s expected of you. So it is almost like a community of society, expectation to do everything because if you don’t do everything then you’re just wimpy (RN 25 Hanna).

‘Culture of ‘don’t go there’

• I just think that if, my opinion is they are not discussed early enough, they are not discussed, you know, everyone should have discussion here at the moment because who knows. I just think it is one of those things that aren’t discussed enough, culturally, you know, I don’t know. We just don’t want to go there … they don’t want to know about it, they don’t want to talk about it. Everyone is in denial. (RN 3: Carla).

Lack of family involvement in care

• I find often the people who can’t cope the most are the people who haven’t been involved so much because the guilt thing is huge. People who are very involved, visit regularly, spend long periods of time, they come to accept it more readily than someone who visits once a year (RN 23: Krys).

Post-transition

• I was concerned but in a way I was also relieved that the decision had been made.

• I think there is a sense of relief that a decision has been made and that they have been able to come to a satisfactory conclusion

• I don’t think that any of us have regretted it. I don’t think we have any regrets about our decision.

• I followed all his wishes. I never upset him, not once. I respected him. So no regrets, I have done everything that he wanted me to until the end after he died. It gives (me) great satisfaction knowing that and happiness, you know what I mean.

Implications

• one’s continuity or past patterns (one’s ‘essence of being’), as the personal systems, beliefs, and values offer the highest probability for successful ‘continuation of oneself’: Specificity, currency, time,

• An individual’s autonomy in the social context in which the person developed self-entity, continuity, and adaptive skills for life changes: Back-ups

• Multidisciplinary team efforts: sense of fulfilment of duty of care

• The expert (CNC) & Champions• Timing of discussion: Community setting• not limited to end-of-life care decision-making but

embraces the concept of gerotranscendence

Where to?

• A National Framework for Advance Care Directives• http://www.hwlebsworth.com.au/acdframework/ACD%20

Draft%20Framework%20complete%20document.PDF• The differences in end-of-life care decision making

between older people from culturally and linguistically diverse (CALD) background and Anglo-Saxon Australian

• A stakeholder approach to the development of 'best practice guidelines' for Advance Care Planning (ACP) for older people with early stage Alzheimer's disease (memory loss) and family members in community settings

• More research on ‘Gerotranscendence’ and old people (eg., Japan, Taiwan, Sweden, India)

References• Atchley, R. C. (1987). Aging: Continuity and change. Belmont, California: Wadsworth Publishing Company.• Atchley, R. C. (1989). A continuity theory of normal aging. The Gerontologist, 29, 183-190.• Atchley, R. C. (2001). Continuity theory. In G. L. Maddox (Ed.), The encyclopedia of aging (pp. 246-248).

New York: Springer Publishing Company.• Hawkins, H., & Cartwright, C. (2000). Advance health care planning and the GP. • Australian Family Physician, 29(7), 704-707.• Mador, J. (2001). Advance care planning: Should we be discussing it with our patients? • Australasian Journal on Ageing, 20(2), 89-91.• Nair, B., Kerridge, I., Dobson, A., McPhee, J., & Saul, P. (2000). Advance care planning in • residential care. Australian & New Zealand Journal of Medicine, 30(3), 339-343.• NSW Health. (2004). Using advance care directives. Sydney: NSW Health.• Stewart, K., & Bowker, L. (1998). Advance directives and living wills. Postgraduate Medical • Journal, 74(869), 151-156.• Taylor, D., & Cameron, P. (2002). Advance care planning in Australia: Overdue for • improvement. Internal Medicine Journal, 32(9/10), 475-480.• Tornstam, L. (1994). Gerotranscendence - a theoretical and empirical exploration. In L. E. Thomas., & S. A.

Eisenhandler (Eds.). Aging and religious dimension (pp. 203-225). Westport: Greenwood Publishing Group.• Tornstam, L. (1997). Gerotranscendence: The contemplative dimension of ageing. Journal of Aging

Studies, 11(2), 143-154.• Tornstam, L. (1999/2000). Transcendence in later life. Generations, 23(4), 10-14.• Wadensten, B., & Carlsson, M. (2001). A qualitative study of nursing staff members’ interpretations of signs

of gerotranscendence. Journal of Advance Nursing, 36(5), 635-642.• Wadensten, B., & Carlsson, M. (2003). Theory-driven guidelines for practical care of older people, based on

the theory of gerotranscendence. Journal of Advance Nursing, 41(5), 462-470.• Wadensten, B. (2005). Introducing older people to the theory of gerotranscendence. Journal of Advance

Nursing, 52(4), 381-388.

References

• Jeong, S., Higgins, I., & McMillan, M. (2010). The essential components of quality in end-of-life care for older people. Journal of Clinical Nursing, 19, 389-397.

• Jeong, S., Higgins, I., & McMillan, M. (in press). Experiences with Advance Care Planning (ACP): Part 1. Older people and family members’ perspective. International Journal of Older People Nursing.

• Jeong, S., Higgins, I., & McMillan, M. (in press). Experiences with Advance Care Planning (ACP): Part 2. Nurses’ perspective. International Journal of Older People Nursing.

• Jeong, S., Higgins, I., & McMillan, M. (2007). Advance Care Planning (ACP): The nurse as ‘broker’ in residential aged care facilities. Contemporary Nurse Journal, 26(2), 184-195.

• Acknowledgement

I would like to give special thanks to the older people, their family members, and the nursing staff in the nursing homes where the study was conducted. I gratefully acknowledge the scholarship and Early Career Researcher Grant provided by the University of Newcastle during the data collection and writing period.

QUESTIONS ?

Sarah.Jeong@newcastle.edu.au

+ 61 2 4349 4535