by Bejoy Thomas1, Eddy Lang2, Rebecca Malhi3, Aynharan Sinnarajah4
1 Coordinator, Department of Psychosocial Resources, CancerControl Alberta, Tom Baker Cancer Centre, Alberta Health Services, and Adjunct Assistant Professor, Department of Oncology, Division of Psychosocial Oncology, University of Calgary
2 Interim Department Head, Associate Professor, University of Calgary, Department of Emergency Medicine, Senior Researcher, Alberta Health Services, Calgary Zone
3 Research Associate, Department of Oncology, Division of Psychosocial Oncology, University of Calgary
4 Physician Consultant, Palliative & End of Life Care, Clinical Informatics, Alberta Health Services – Calgary Zone Clinical Lecturer, Section of Palliative Medicine, Dept of Oncology, University of Calgary
A quick scan of the literature on Emotional Distress: the 6th Vital Sign indicates a substantial proportion of cancer patients (as high as 35-45%) experience high levels of distress from unrelieved and often debilitating symptoms1-13. Despite the recent implementation of the 6th Vital Sign, clinical acumen (in a fragmented way) has attempted to meet the need with extensive services, resources and programs, like the fatigue clinic, psychosocial oncology services, rehabilitation unit, and palliative care services. One of our earlier studies identified that regardless the obvious symptom burden (e.g. very high levels of fatigue) as endorsed by patients, there seems to be an under-utilization of resources designed to mitigate these specific needs – e.g. the skew in the patient profile that accessed the fatigue class14. Also, despite a body of research that highlights the benefits of early access to palliative care, including prolonged survival and an improvement in quality of life15, palliative care seems to be under-utilized for reasons that are important to understand.
Former Canadian senator Carstairs’ report on palliative care in 201016 estimated palliative care availability in Canada, for those in need, to be 16-30% with variation a function of location. Our previous research demonstrated, retrospectively, that 31% of deceased cancer patients (n=<2000) had not accessed palliative care – predictors of lack of use were low income and low education. Of those that did utilize some type of palliative care service, overlapping pathways included palliative home care (69%), inpatient palliative care unit (32%), and hospice (53%). Furthermore, we found that patients with high symptom burden were likely to have lower utilization of palliative care services or other existing supportive care services13. This data provided us with a starting point for the current study. If cancer patients have high levels of symptom-related distress, where are they going? Instead of utilizing existing supportive care services, might they be accessing the emergency department (ED)? We were particularly interested in examining the rate of use of ED and palliative care – in the first year following baseline screening – as well as determining the demographic and psychosocial predictors of each type of service used. This analysis is currently ongoing.
The sample in the cited published abstract17 comprised of the 4,329 patients who agreed to participate in Screening for Distress data collection between July 2007 and March 2010. We found that 1,881 patients (44%) made 4,623 visits to ED. Of these patients, 45% made one visit, with 47% making two to five visits and the remaining 8% made six or more visits – with most visits occurring within 6 months of initiating treatment. This study represented a first step in quantifying the utilization patterns of palliative care and ED services by cancer patients in Calgary, Alberta. Subsequent phases will analyse the linked databases to answer questions like: What are the demographics of patients with high symptom burden yet who under-utilize existing supportive care resources? Does palliative care usage in the first year of diagnosis lead to an impact on use of ED? Specifically, we will identify factors that predict ED and palliative care utilization after cancer diagnosis, and determine predictors of repeat utilization over longer follow-up. Even though research exists that associates reduced ED use in the last 90 days of life with earlier palliative care intervention, an outstanding question is whether this reduction also occurs from the time of diagnosis. Ultimately, we would want to see change in 3 critical areas:
- At the tertiary level, the ability to facilitate resource access and utilization – proactively, thereby reducing symptom burden;
- The development of interventions and resources to increase appropriate referrals to palliative care services earlier in the disease trajectory; and
- Despite all the safety nets in place, patients with poor symptom control but still on active treatment may still present at the ED. In such cases, we would like the emergency medicine physician to consider a palliative care referral and not associate the process to just end-of-life care.
At the tertiary level, interventions could include the use of patient-oriented language (systemic use of health literacy principles), or creating the flexibility to offer targeted services that are adapted (fatigue/ sexuality issues for the younger vs. older cancer patient; or considering patient language and ethnicity/race) and adjusted to patient need (same resource in multiple formats e.g. classes, one-on-one service, podcast, web-based tools, etc). A further intervention would be to integrate palliative care consultants (preferably tumour-based) into the ambulatory oncology clinics as part of the primary care team. This is already occurring in the Brain metastases clinic in Calgary where the palliative care consultant works with the radiation oncologist in seeing most of the patients who come through the clinic for consultation18. Further efforts at expanding into additional clinics are being explored.
Another intervention that could improve care delivery and optimize referrals would be a palliative-focused order set that targets ED users and alerts clinicians to linkages with community palliative care resources. There would also be evidence-based options provided around symptom control in this order set.
The term ‘palliative care’ can mean different things to different people. Many confuse it as being synonymous with ‘end of life’. But by most definitions, palliative care is focused on improving quality of life of those with life-limiting illness, regardless of prognosis. Thus improving access to, and capacity of, palliative care in cancer centres as well as raising the public profile of palliative care is an ongoing concern. On the public front, the Canadian Hospice and Palliative Care Association (www.chpca.net) has been spearheading the ‘Speak Up: Start the Conversation about end-of-life care’ initiative, which focuses on the importance of Advance Care Planning for all.
As is evident in this brief commentary, a lot more work needs to be done. As part of a very large team comprising of clinicians, administrators, health services researchers, we believe that improving the interdisciplinary nature of cancer care benefits not just the patient (and family) in their cancer journey but the health system as a whole in terms of efficiency and efficacy of care delivery.
(1) Bultz, B.D & Carlson, L.E. Editorial: Effects of Screening for Psychological Distress on Patient Outcomes in Cancer: a Systematic Review. Journal of Psychosomatic Research, in press (2013).
(2) Bultz, B.D., Waller, Jones, P., Halland, J., Cullum, J., A., Groff, S., Leckie, C. Shirt, L., Blanchard, S., Lau, H., Easaw, J., Carlson, L.E. Implementing Routine Screening for Distress, the 6th Vital Sign, for Head and Neck and Neurological Cancer Patients. Journal of the National Comprehensive Cancer Network, in press (2013).
(3) Breitbart, W., Bultz, B.D., Dunn,L., Grassi, L., Watson, M. Editorial: 2012 President’s Plenary International Psycho-Oncology Society: future directions in psycho-oncology. Psycho-Oncology. Oncology Exchange 2013 (22): 1439-43; DOI: 10.100/pon
(4) Carlson L.E, Waller, A., Groff SL, Zhong L, Bultz B.D. (2013). Reply: benefits of screening cancer patients for distress still not demonstrated. Br J Cancer. 108(3):738-9. doi: 10.1038/bjc.2013.17. Epub 2013 Jan 31.
(5) Waller, A., Groff, S.L., Hagen, N., Bultz, B.D., Carlson, L.E. Characterizing Distress, the 6th Vital Sign, in an Oncology Pain Clinic. Current Oncology. 2012 Apr;19 (2):e53-9.
(6) Waller A., Garland, S., Bultz, B.D. Using Screening for Distress, the 6th Vital Sign to Advance Patient Care with Assessment and Targeted Interventions. Supportive Care in Cancer, Volume 20, Number 9 (2012), 2241-2246
(7) Carlson, L.E., Waller, A., Groff, S.L., & Bultz, B.D. Screening for Distress, the 6th Vital Sign, in Lung Cancer Patients: Effects on pain, fatigue and common problems – secondary outcomes of a randomized controlled trial. Psycho-Oncology. 2012 Nov 12. doi: 10.1002/pon.3223
(8) Waller, A., Williams, A.D., Groff, S.L., Carlson, L.E. & Bultz, B.D. Screening for Distress, the 6th Vital Sign: Examining self-referral in people with cancer over a one year period. Psycho-oncology 2011; doi: 10.1002/pon.2102
(9) Bultz BD, Groff SL. Screening for Distress, the 6th vital sign in oncology: from theory to practice. Oncology Exchange 2009; 8(1):8.
(10) Thomas BC, Bultz BD. The future in psychosocial oncology: screening for emotional distress–the sixth vital sign. Future Oncol. 2008 Dec; 4(6):779-784.
(11) Bultz BD, Thomas BC, Stewart DA, Carlson LE. Distress – the sixth vital sign in cancer care: Implications for treating older adults undergoing chemotherapy. Geriatrics and Aging 2007; 10(10):647-653.
(12) Holland JC, Bultz BD, National comprehensive Cancer Network (NCCN). The NCCN guideline for distress management: a case for making distress the sixth vital sign. J.Natl.Compr.Canc Netw. 2007 Jan; 5(1):3-7.
(13) Carlson, L.E., Waller, A., Groff, S.L., Zhong, L., & Bultz, B.D. Online screening for distress in newly diagnosed oncology outpatients: Randomised controlled trial of computerised vs. personalized triage. 2012British Journal of Cancer, 107, 617-625.
(14) Alexeeva I, Thomas BC, Pelletier G. Psychosocial characteristics of cancer patients who choose to attend an educational session on cancer related fatigue. Cancer Nursing. 2008 September/October, 31(5):408-414.
(15) Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010 August; 363(8):733-742.
(16) Carstairs, S. Raising the bar: A roadmap for the future of palliative care in Canada. June 2010. Downloaded from www.chpca.net/media/7859/Raising_the_Bar_June_2010.pdf.
(17) Prystajecky M, Lang E, Wang D, Simon J, Sinnarajah A, Martin TLW, Murray A, Hagen N, Waller A, Bultz B.D., Carlson L, Groff S, McRae A, Thomas BC. Emergency Department Utilization by Adult Cancer Patients: A Prospective Cohort Study. CJEM, 2012, 14, S1:5522
(18) Jung H, Sinnarajah A, Enns B, Voroney JP, Murray A, Pelletier G, Wu JS. Managing brain metastases patients with and without radiotherapy: initial lessonsfrom a team-based consult service through a multidisciplinary integrated palliative oncology clinic. Support Care Cancer. 2013 Aug 10. [Epub ahead of print]