Transitioning to palliative care: How early is early palliative care?

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Emory Manning
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1 Transitioning to palliative care: How early is early palliative care?

2 Cancer: a growing problem Cancer is an increasing health care problem It is estimated that by 2020, there will be 20 million new cases of cancer each year around the world 70 % of those cases will occur in developing countries Of patients with cancer approximately 70 % will experience pain that is caused by the cancer or its treatment

3 Rising prevalence of Non communicable disease in Thailand

4 Non Communicable diseases

5 NCD's are currently the leading cause of death in South- East Asia, and are estimated to account for 71% of deaths in Thailand.

6 Modernisation of Medicine Technological advances Prevention and Cure Prolongation of life

7 Changes in last two decades Cure is possible in some cancers Improved survival: breast cancer, lymphoma Improved time to progression/metastatic disease Significant improvement in treatment options for Non-malignant disease Patients are living longer But patients are living with chronic disease and symptom burden

8 Has the pendulum swung too far? CARE MODERN MEDICINE The art of care versus the science of medicine

Dame Cicely Saunders Nurse, social worker physician and writer, and founder of hospice movement 100 th year celebrations 2018 "You matter because

9 Dame Cicely Saunders Nurse, social worker physician and writer, and founder of hospice movement 100 th year celebrations 2018 "You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die." 9

10 Palliative Care: DEFINITION Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with lifethreatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual

11 Palliative Care Affirms life and regards dying as a normal process Intends neither to hasten or postpone death

12 Palliative Care Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

13 Palliative Care and Medicine Prevention is better than cure Important principle of palliative care is the early and precise assessment and diagnosis of symptoms with prompt treatment To prevent late sequelae and psychological trauma that this can cause The sanctity of life with quality of life: neither to hasten or prolong death

14 Patient centred care is very important

15 Better concept: Most patients need both disease-modifying treatments and help to live well with disease death Disease-modifying curative Treatment Symptom management palliative Advanced care planning Family support (incl bereavement) Time Bereavement

16 What did we learn? Understanding the patient Early on, it was expected and good Cancer Care to investigate and treat invasively We improved survival but also quality of life As the disease progresses, the same outcomes may not be achieved Not about prolonging life BUT to improve quality of life with impeccable symptom control and support Diagnose dying Not prolonging dying Shared care helped us to achieve this balance

17 What do patients want?

18 Symptom burden and distress There is a high level of symptoms in patients with advancing disease This impacts on their quality of life Does it have a negative consequence if we don t identify and manage them?

19 Prevalence of Symptoms Vainio et al 1996 Int Collab Study Mod to Sever Pain 51% (all types of pain: 85%) Nausea/vomiting 4-44% Dyspnoea 15-9%7 Constipation 4-65% Insomnia 7-28% Delirium 4-85% Anorexia 6-74% Weight loss 58-77% Fatigue 13-91% Difference in prevalence with patient rated and physician gathered

20 All patients suffered from at least one symptom frequently and almost constantly with an average of 6 symptoms. Oechsle 2014 JPSM

21 Findings: Oechsle 2014 JPSM Perceived sense of dignity was strongly associated with symptom burden The intensity of symptoms (highest) Symptom distress Frequency of symptoms Perceived treatment requirements Symptoms with psychological symptoms especially anxiety and sadness Highest correlations with symptom distress, existential distress, peace of mid and social support Perceived sense of dignity and psychological well being are closely related

22 Our Duty of care To identify these symptoms and the distress it causes our patients To treat or manage these symptoms Some symptoms are easier to control (Pain, breathlessness, nausea, vomiting, bowels) Some are harder (anorexia, tiredness, fatigue, anxiety) Need a combination of pharmacological and nonpharmacological Communication Validation Support

23 Does palliative care make a difference?

24 Original Article Early Palliative Care for Patients with Metastatic Non Small-Cell Lung Cancer Jennifer S. Temel, M.D., Joseph A. Greer, Ph.D., Alona Muzikansky, M.A., Emily R. Gallagher, R.N., Sonal Admane, M.B., B.S., M.P.H., Vicki A. Jackson, M.D., M.P.H., Constance M. Dahlin, A.P.N., Craig D. Blinderman, M.D., Juliet Jacobsen, M.D., William F. Pirl, M.D., M.P.H., J. Andrew Billings, M.D., and Thomas J. Lynch, M.D. N Engl J Med Volume 363(8): August 19, 2010

25 Method Non blinded, randomized, controlled trial of early palliative care integrated with standard oncologic care, as compared with standard oncologic care alone The study was performed at Massachusetts General Hospital in Boston Eligible patients were enrolled within 8 weeks after diagnosis 151 patients enrolled in the study

26 Measures Used Assessment of Cancer Therapy Lung (FACT-L) scale multiple dimensions of the quality of life (physical, functional, emotional, and social well-being) Lung cancer subscale (LCS) of the FACT-L scale seven symptoms specific to lung cancer The primary outcome of the study was the change from baseline to 12 weeks in the score on the Trial Outcome Index (TOI) sum of the scores on the LCS and the physical well-being and functional wellbeing subscales of the FACT-L scale Mood was assessed with the use of both Hospital Anxiety and Depression Scale (HADS) Patient Health Questionnaire 9 (PHQ-9)

27 Mean Change in Quality-of-Life Scores from Baseline to 12 Weeks in the Two Study Groups Temel JS et al. N Engl J Med 2010;363:

28 Twelve-Week Outcomes of Assessments of Mood Temel JS et al. N Engl J Med 2010;363:

29 Kaplan Meier Estimates of Survival According to Study Group Temel JS et al. N Engl J Med 2010;363:

30 Conclusion Early integration of palliative care for patients with metastatic non small-cell lung cancer is a clinically meaningful and feasible care model that has effects on survival and quality of life that are similar to the effects of first-line chemotherapy in such patients Those who were assigned to early palliative care had improved mood more frequent documentation of resuscitation preferences less aggressive end-of-life care

31 Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Camilla Zimmermann, The Lancet, 2014 Outpatient medical oncology Diagnosed with various cancers Received standard cancer care or early palliative care referral 461 patients evaluated Quality of life measures (FACT and QUALE), symptom assessment and satisfaction

32 Primary outcomes Quality of life (Functional Assessment of Chronic Illness Therapy-Spiritual Well Being [FACIT-Sp] Quality of life at the End of Life [QUAL-E] Symptom Severity (Edmonton Symptom Assessment System [ESAS]) Satisfaction with care (FAMCARE-P16) Problems with medical interactions (Cancer Rehabilitation Evaluation System Medical Interaction Subscale [CARES-MIS] Secondary outcomes: changes in above

33 Results At 3 months, there was a non-significant difference in change score for FACIT-SP between intervention and control groups Significant difference in QUAL-E and FAMCARE- P16 But no difference in ESAS At 4 months, there were significant differences in change scores for all outcomes except CARES- MIS. All differences favoured the intervention group Early referral to palliative care

34 Findings: Satisfaction with care (FAMCARE-P16) Satisfaction of patients with their care improved significantly at both endpoints in the early palliative care intervention group, whereas it deteriorated in the control group

35 Conclusion Although the difference in quality of life was non-significant at the primary endpoint, this trial shows promising findings that support early palliative care for patients with advanced cancer

36 Diagnosing Dying Symptom cluster Prognostic tools Allows appropriate conversations with patient/family Withdrawing and withholding inappropriate interventions Including NFR (Not for Resuscitation) Commencing appropriate end of life measures Availability of extra support and communication Dying at home may be possible

37 Caring for patients at the end of life Holistic care plan Physical Psychosocial Spiritual Commencing appropriate end of life measures Medications (prn, route, access to) Mouth/ bowel / pressure / supportive care Conversations around feeding/fluids May require a multidisciplinary team (nurses, social worker, OT, physio, psychologist)

38 How do we practice palliative care? Symptom control Evidence based practice Ethical principles Decision making Communication skills End of life discussions (Do not resuscitate) Access to services including hospice and community palliative care Prognostication and Advance Care Planning Recognition of Dying Terminal Care

39 Early Palliative Care Palliative approach should be applied from the time of diagnosis of an incurable, advancing disease Principles of palliative care is everyone s business Specialist palliative care involvement early improves quality of life for patients

Integration of Palliative Care into Standard Oncology Care. Esther J. Luo MD Silicon Valley ONS June 2, 2018

Integration of Palliative Care into Standard Oncology Care Esther J. Luo MD Silicon Valley ONS June 2, 2018 Objectives Become familiar with the literature illustrating the benefits of palliative care in