Sheila Rodger, R5 Geriatric Medicine, U of C Supervised by Dr. D. Hogan

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1 Frequency, Indications and Outcomes of Palliative Care Consultation Among Long-Term Care Residents with Advanced Dementia in Calgary, AB: A Mixed-Methods Exploratory Study Sheila Rodger, R5 Geriatric Medicine, U of C Supervised by Dr. D. Hogan

2 FACULTY/PRESENTER DISCLOSURE Faculty: Sheila Rodger, MD, FRCPC, PGY5 Geriatric Medicine Relationships with financial sponsors: Grants/Research Support: None Speakers Bureau/Honoraria: None Consulting Fees: None Patents: None Other: None

3 DISCLOSURE OF FINANCIAL SUPPORT This research project has not received any financial support. This project will receive in-kind support from Alberta Health Services Calgary Zone Seniors Reporting Analytics in the form of assistance with data extraction from electronic medical records for that component of the project (will not be presented in this talk). Potential for conflict(s) of interest: None

4 MITIGATING POTENTIAL BIAS N/A

5 INTRODUCTION Population with dementia increasing exponentially 1,2 ~1/2 in residential care 3 Increasing proportion of deaths 4-6 CIHI s CCRS AB Residents % dementia dx; 25.9% CPS 5/6; 22.8% residents died 2014/15 4,963 Calgary LTC beds ~1,130 LTC deaths/yr Conservative est. ~675 deaths w/ dementia, incl. ~290 CPS 5/6 1. World Health Organization, Alzheimer Society of Canada, CMAJ 1994; 150: Statistics Canada, UK Office for National Statistics, JAGS 1999;47(7): CIHI CCRS Global News, Oct

6 INTRODUCTION cont d Palliative care: cancer chronic illnesses, incl. dementia 9 Underutilized, end-of-life care in dementia sub-optimal 10,11 Patients with dementia vs. terminal cancer (2004 in US): More likely to have endured uncomfortable interventions at end of life Less likely to have advanced directives limiting invasive care or hospital transfers Access to palliative care in Ontario (pub April 2018) 88% with terminal illness; 44% with organ failure; 32% with dementia Few high-quality studies on end-of-life care for dementia Palliat Med 2014;28: J Gen Intern Med 2004;19: Arch Intern Med 2004;164: BMJ Open 2018;8:e Cochrane Database of Systematic Reviews 2016, Issue 12.

7 RESEARCH QUESTION Which factors prompt the decision to take a palliative approach in Calgary continuing care residents with advanced dementia? How often? Participants involved? Reasons for formal consultation of palliative care services in advanced dementia? How often?

8 METHODS Key Informant Interviews Convenience sample (contacts of research team); snowball-sampling 4 attending physicians/medical directors in LTC 4 other health care providers in LTC Semi-structured interview format, conducted by SR ~30 min, audio-recorded Ethics approval from CHREB at University of Calgary

9 THEMATIC CONTENT ANALYSIS Transcription Coding Categories Themes

10 Theme Category Theme Category Significant role of non-professional staff Embracing palliative care as a strength of LTC Multidisciplinary Input Multidisciplinary team conferences re palliative approach Teamwork and communication LTC competence or lack of competence in palliative care Perceived competence or incompetence Variations in competence among staff and facilities Heterogeneity of dementia; difficulty prognosticating Under-recognized or under-treated pain Dementia-specific concerns Flags for progression of dementia Good death with/from dementia? Logistical barriers Challenge of communication with families Impact of dementia on dying process Influence of families and caregivers Lack of families education re dementia trajectory High volume of deaths from/with dementia in LTC Importance of considering families needs Death in LTC vs hospice Rarity of transfers to hospice Early palliative care / proactive approach Decisions re involving palliative care consult team Inappropriateness of hospice Appreciation of availability Reasons to consult Consult rarely or never needed Consult not helpful or not considered in dementia Timing of palliative approach Reactive palliative care Leaving things too late Transitions in care as triggers Impact of comorbidities LTC as chronic palliative care

11 Category Lack of families education re dementia trajectory Importance of considering families needs Challenge of communication with families Theme: Influence of Families and Caregivers Quotes For people who really don t appreciate the disease, what it means, and what to anticipate, they ll tend to push to keep their family member longer. And if I have the good luck of having met somebody early enough, and having followed them for a while, and they have that trust in the care and trust in the process, then those conversations go easier, than when they ve been somewhere else and then they come into LTC just kind of towards the end. It s harder. I would try and involve as many of the family members as possible [in conversations about moving to a palliative approach], and certainly there s always one person who s designated as the primary contact, but they re often not always the one who s struggling with the decision. what s interesting to me is how families are so different. You could have the same patient, and yet the care plan could look quite different.

12 Category Early palliative care / Proactive approach Theme: Timing of Palliative Approach Quotes For me, I tend to have them very early on [ ] And we re finding that families are actually the ones that are also initiating these conversations as well. Reactive palliative care / Leaving things too late I think we could definitely be more pre-emptive, you know, considering 66-70% of our patients have dementia on admission [ ] I think that we should be thinking in terms of end of life from the very beginning, not waiting until something medical happens before we have to react. So right now, I think it s pretty reactive. Transitions in care as triggers Impact of comorbidities LTC as chronic palliative care

13 DISCUSSION Strengths Practice patterns not previously described Complexity Opportunities to enhance skills of LTC physicians & staff Stated vs. actual conduct Limited # of interviews Risk of bias Generalizability Limitations:

14 FUTURE DIRECTIONS 2nd Component of Project: Calgary Palliative Care database to determine # of consultations from LTC in 2014/2015 and proportion for advanced dementia Comparative chart reviews of palliative care consultations for advanced dementia vs. other concerns Themes for future research, policies and practice

15 WITH THANKS TO: Dr. Aynharan Sinnarajah (Palliative Care) Greta Wiegersma RN and Kathy Rasmussen RN (Palliative Care Consult Team) NavjotVirk RN (Brenda Strafford Foundation) Andrew Fong (AHS Reporting Analytics) Pierre Guenette (AHS Business Intelligence Analyst) And a special thanks to my supervising preceptor, Dr. David Hogan

16 REFERENCES 1. World Health Organization and Alzheimer s Disease International. Dementia: A Public Health Priority. Geneva: World Health Organization, Alzheimer Society of Canada. Prevalence and monetary costs of dementia in Canada. Toronto (ON): Alzheimer Society of Canada; Accessed April 8, Canadian study of health and aging: study methods and prevalence of dementia. Can Med Assoc J 1994; 150: Office for National Statistics, United Kingdom. Statistical Bulletin. Deaths registered in England And Whales (Series DR): United Kingdom, /deaths/bulletins/deathsregisteredinenglandandwalesseriesdr/2015 Accessed Dec 23, Statistics Canada. CANSIM table : Leading causes of death, total population, by age group and sex. Canada, Available at: Table&srchLan=-1&p1=-1&p2=9. Accessed Dec 29, Ganguli M, Rodriguez EG. Reporting of dementia on death certificates: A community study. J Am Geriatr Soc 1999;47(7):842-9.

17 REFERENCES 7. Continuing Care Reporting System, , Canadian Institute for Health Information October 14, van der Steen JT, Radbruch L, Hertogh CM, et al.: White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care. Palliat Med 2014;28: Sachs GA, Shega JW, Cox-Hayley D: Barriers to excellent end-of-life care for patients with dementia. J Gen Intern Med 2004;19: Mitchell SL, Kiely DK et al. Dying With Advanced Dementia in the Nursing Home. Arch Intern Med 2004;164: Seow H, O'Leary E, Perez R, et al. Access to palliative care by disease trajectory: a populationbased cohort of Ontario decedents. BMJ Open 2018;8:e Murphy E, Froggatt K, Connolly S, O Shea E, Sampson EL, Casey D, Devane D. Palliative care interventions in advanced dementia. Cochrane Database of Systematic Reviews 2016, Issue 12. Art. No.: CD

18 Thank You For Your Attention