Advance Care Planning in CKD- results of recent research

Josephine Clayton MBBS PhD FRACP FAChPM

Associate Professor of Palliative CarePalliative Medicine Physician

HammondCare Palliative & Supportive Care ServiceUniversity of Sydney

Content

• Overview about ACP and why it is important for people with CKD

• Findings from a recent systematic review on ACP for people with CKD

• Findings from a National survey of renal clinicians from Australia and New Zealand

What is Advance Care Planning?

‘a process of planning for future health and personal care whereby the person’s values, beliefs and preferences are made known so they can guide decision-making at a future time when that person cannot make or communicate his or her decisions’

National Framework for Advance Care Directives, Canberra 2011.

Why is Advance Care Planning important?

Potential benefits of ACP

• Qualitative studies: – Help patients clarify their important goals & priorities

– Enhanced open discussion of dying between patients/families

– Reduced decision-making burden on families

Potential benefits of ACP

• Cohort Studies1,2 & RCT3: – Reduced aggressive medical care near death1,2

– Increased hospice use1,2

– No increase in depression or “worry” in patients1

– Increased likelihood of person being cared for at EOL according to their wishes3

– Improved patient/family satisfaction with care3

– Improved bereavement outcomes in surviving relatives2, 3

1Mack J et al. JCO 2012, 2Wright A et al. JAMA 2008, 3Detering K et al. BMJ 2010

Brinkman-Stoppelenburg A et al. Palliative Medicine 2014

Why is Advance Care Planning important for people with CKD?

• Annual mortality rate of persons on dialysis in Australia 13% - 50%1

• Dialysis patients, more than any other patient group, tend to die in ICU, undergoing costly, burdensome treatments inconsistent with their wishes.2, 3

• CKD is shown to be associated with cognitive deterioration,4, 5

– leaving family members and physicians to make decisions about commencing or withholding treatment.

1. ANZ Dialysis & Transplant Registry;2013..2. Davison, S.N., Clinical Journal of American Society of Nephrology, 2010.3. Wong, S.P., et al. Archives of Internal Medicine, 2012. 4. Khatri, M., et al. JASN, 2009. 5. Murray, A.M., et al. Neurology, 2006

What is the evidence base for ACP for people with CKD?

Methods

• Included any article in peer-reviewed English language journals:– Studies of any design reporting original research

about ACP

– and sampling adults with primary diagnosis of CKD, their families or HP caring for CKD patients

• Search strategy developed by Caresearch:– various databases until 29th April 2013

– handsearching of reference lists of included articles

ResultsRecords identified:

Database search 2,764

Handsearching 13

Records

screened,

after duplicates

removed

(n = 2,383)

7

interventions

(15%)

40

descriptive

studies

(74%)

6

qualitative

studies

(11%)

55 articles reporting on studies with 51 discrete samples

Records excluded

(n = 2,328)

Some of the key findings

• Most studies descriptive (n=40) exploring patient/family attitudes towards ACP or medical interventions at EOL

• Qualitative studies (n=6) emphasised:– the importance of developing patient confidence

that their wishes for future care will be followed

– discussions about stopping dialysis require a distinct conversation separate from general discussions about other life sustaining therapies

Some of the key findings continued

• Only 7 intervention studies:

– each focussed on a single aspect of ACP such as nurse educators, peer facilitators, patient information

– tested limited outcomes such as ACD completion rates or surrogate’s comfort with their role

– nearly all single centre studies with small sample sizes

– one multicentre study demonstrated improved patient well-being and anxiety following ACP sessions with a peer mentor

– not yet possible to draw conclusions about most effective ways to conduct ACP in this CKD

Conclusion of accompanying editorial

"While we await more definitive study of this issue, we can only hope that clinical nephrologists realize the importance of ACP and engage in these conversations with their patients and families.”

Holley & Davison, Am J Kidney Dis, 2014; 63(5):739-740

Since our review

• Bristowe K (senior author Murtagh F) et al. Palliative Medicine 2015:

– Qualitative study of 20 people on haemodialysis at two UK hospitals.

– Participants with ESKD reported:

• lack of opportunity to discuss future care

• considerable unmet needs for ACP throughout their illness

– “There is a need to normalise discussions about preferences, priorities and future care in renal and haemodialysis units, earlier in the disease trajectory”

Since our review

• Song et al. AJKD 2015:– RCT of nurse facilitated ACP intervention in 210

patient/surrogate dyads from 20 dialysis centresfrom one region in USA

– found improvements in dyad preparation for EOL decision making and surrogate bereavement outcomes

– cost effectiveness of the intervention and concordance with EOL care received/patient’s wishes not examined

What do the guidelines say?

“The treatment team should engage in ACP. These discussions should start early in the illness trajectory and should include discussions about health states in which patients would want to withhold or withdraw from dialysis” (KDIGO supportive care in CKD roadmap International Society of Nephrology 2015)

Similar recommendations in other guidelines:• KHA and ANZSN Renal supportive and palliative care position statement.

Nephrology 2013

• PCA and KHA Palliative Care for Chronic and ESKD position statement 2014

• ASN J Am Soc Nephrology 2000

What is the current practice of ACP for people with CKD in Australia/New Zealand?

• Recently completed survey of renal clinicians

• Funded by Kidney Health Australia grant

• Team members:

– Tim Luckett, Lucy Spencer, Rachael Morton, Carol Pollock, Lawrence Lam, William Silvester, Marcus Sellars, Karen Detering, Phyllis Butow, Allison Tong, Josephine Clayton (PI)

Aims of survey

• Describe current ACP practice from systems and renal clinician perspectives

• Identify barriers and facilitators to ACP in CKD setting

• Establish the perceived need for, and desirable content of HP education and CKD specific approaches to ACP

Methods of survey

• Anonymous cross-sectional survey administered online via SurveyMonkey® between 30-5-14 and 21-1-15

• Survey developed by multidisciplinary team, then piloted in 10 renal clinicians prior to wider dissemination

• 43 items including yes/no, verbal rating scales (e.g. strongly agree to strongly disagree) and free text comments

• Respondents eligible if self-identified as a HP caring for adult CKD patients in Australia or NZ

• Recruitments via peak bodies (including RSA, ANZSN, ACI) and professional networks

Results: sample

• 417 respondents, of whom 375 (90%) provided sufficient data (<6% missing on any item)

• Free text comments from all 417 respondents

• Postcode data suggests sample represented at least 157/259 (61%) of renal units in Australia, all Australian States/Territories represented, only 4% of participants from NZ

Characteristics of

respondents (n=375)

n (%)

Clinical role

Nephrologists

Nephrology nurses

Nephrology social worker

Other*

85 (23%)

243 (65%)

15 (4%)

32 (8%)

Age years - mean (SD) 48.7 (8.8)

Sex

Female 299 (80%)

Years of experience in

nephrology

10 + 262 (70%)

When do you think is the best time to begin to discuss ACP with patients who are receiving or considering dialysis?

With all patients when considering treatment options?

With all patients before starting dialysis?

With all patients after starting dialysis?

Only when the patients have poor prognosis or unwell?

Timing varies between patients?

When do you think is the best time to begin to discuss ACP with patients who are receiving or considering dialysis?

With all patients when considering treatment options

208 (59%)

With all patients before starting dialysis

68 (19%)

With all patients after starting dialysis

8 (2%)

Only when the patients have poor prognosis or unwell

20 (6%)

Timing varies between patients 46 (13%)

At your workplace how routinely is ACP discussed with these patient groups?

Proportion of respondents agreeing it was discussed most of the time

CKD patients who are considering their treatment options

31%

Patients on dialysis 32%

ESKD patients on a supportive care pathway

46%

Versus 59%recommended

• 67% respondents indicated that ACP at their workplace was done on ad hoc basis (54%) or hardly ever occurred (13%)

• 61% said ACP was done poorly at their workplace

• 78% said only a minority of ESKD patients in their workplace have a ACP in their medical file

Gap between comfort and skills

Feel skilled/very skilled Feel comfortable/very comfortable

Discuss ACP 66% 84%

Assisting patients to complete ACD

46%

Discuss prognosis 67% 78%

Discuss death and dying 77% 83%

Discuss potential withdrawal of dialysis

78% 86%

Discuss whether or not to attempt CPR

71% 78%

Barriers to ACP at workplace

Lack of clinician time

Patient/family discomfort

Health professional discomfort

Health professional lack of expertise

Difficulty involving families

Discouragement from colleagues or manager

Lack of policy or procedures

Environmental problems (e.g. space)

Cultural or language barriers

Barriers to ACP at workplace

Lack of clinician time 82%

Patient/family discomfort 84%

Health professional discomfort 72%

Health professional lack of expertise 83%

Difficulty involving families 83%

Discouragement from colleagues or manager 19%*

Lack of policy or procedures 59%

Environmental problems (e.g. space) 61%

Cultural or language barriers 65%

*the gate keeping role of nephrologists was a common themewithin free text comments

Facilitators to ACP at workplace

More education about ACP for renal clinicians

Make ACP the role of a specially trained HP

More dialysis – specific ACP programs/patient education materials

Facilitators to ACP at workplace

More education about ACP for renal clinicians 95%

Make ACP the role of a specially trained HP 85%*

More dialysis – specific ACP programs/patient education materials

97%

*comments qualified this by recommending that all renalclinicians should be sufficiently skilled to discuss ACP should opportunities arise

Predictors of personal participation in ACP discussions

• Approximately one third reported personally discussing ACP with a majority of their patients – 38% in ESKD patients on supportive care pathway

– 33% in dialysis patients

– 29% in patients considering their treatment options

• In multivariate analysis, self rated skills in ACP and the respondent considering ACP to be part of their role, were the only factors consistently predictive of participation in ACP across patient groups

Willingness to engage more often in ACP

• Of the 329 (88%) of respondents who were not already regularly discussing ACP with their patients, 289 (88%) said they would be willing to engage more often in ACP

• Only 8% unsure and 4% not willing

Factors associated with clinicians’ willingness to engage more often in ACP

Variables OR (95% CI)*

Clinical role other than nephrologist 4.95 (1.74-14.07)

Age group – 45+ years 0.25 (0.08-0.75)

Agree that it is not their role to

discuss ACP

0.13 (0.05-0.32)

Comfortable discussing ACP 1.29 (1.12-1.48)

Agrees more dialysis-specific ACP

programs/patient education materials

are needed

10.88 (2.38-49.79)

*Respondents who indicated no intention or uncertainty were used as the referent group

What sort of health professional education or training about ACP do you think would be helpful? (tick all the apply)

Online training 62%

Attendance at lecture or workshop 72%

Small group experiential learning 54%

Practice with simulated patient or caregiver with feedback from facilitator

39%*

Practice in role play in small group with colleagues playing the role of a patient or caregiver

29%*

Mentoring from a colleague 52%

Feedback from a supervisor or mentor who observed me talking about ACP with patient and/or family member

29%*

Don’t think training is useful 2%

*interventions most likely to be effective

Suggestions in free text comments for improving ACP

• Public health campaigns about importance of ACP

• Better systems for storage of ACP documents

• ACP to be integrated into routine care in renal units with metrics to drive performance

• However, concern that overly formalising ACP could lead to “tick-box” approach

• Need to allow for tailoring of timing and content to the individual patient

Limitations

• A likely volunteer effect may reduce sample representativeness

• Nonetheless we were primarily interested in views of motivated clinicians likely to drive change

• Geographic spread wide, numbers from each discipline relatively small

Conclusions• ACP in CKD patients needs promotion and support to

improve access and quality

• More ACP education for all renal clinicians and development of CKD specific ACP materials strongly supported

• Further leadership and endorsement of ACP by nephrologists may be needed

• Consider appointing dedicated ACP facilitators to help coordinate the more time consuming aspects of ACP – this approach needs further evaluation of effectiveness and

cost-effectiveness in CKD setting