Symptom management in (specialized) palliative care: who is responsible for what? Rettke, Horst, PhD, RN

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1 Symptom management in (specialized) palliative care: who is responsible for what? Rettke, Horst, PhD, RN 1

2 Symptom management in (specialized) palliative care Common fallacies Frequent symptoms Resources Symptom management 2

Fallacy I: Palliative care = end-of-life-care Palliative care = approach to improve quality of life of patients and their families facing the problem associated with life-threatening illness through

3 Fallacy I: Palliative care = end-of-life-care Palliative care = approach to improve quality of life of patients and their families facing the problem associated with life-threatening illness through prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological and spiritual World Health Organization (2002). National cancer control programmes: policies and managerial guidelines. 2nd ed. Geneva. 3

4 Shifts in focus over time Yesterday Cut off point: response vs. non-response to curative treatment change in (medical) treatment Today Early onset of palliative care to timely introduce symptom management Alleviating physical symptoms (pain!) responding to physical, emotional and spiritual patient needs Focus on patients and their families, their carers and mourning post-mortem Sepulveda, Marlin, Yoshida & Ulrich (2002). Journal of Pain and Symptom Management. 24(2):

5 Significant advances in the care of heart failure patients + Focus on therapy upon prolongation of life + Less emphasis placed upon provision of palliative care = Large palliative care gap from initial symptom presentation to end-stage care. Howlett (2011). Current Opinion in Cardiology. 2:

6 Trajectory patterns in chronic illness Murray et al. (2007). Journal of Pain and Symptom Management. 34(4):

7 Barriers to palliative care in chronic heart failure patients Unpredictable illness trajectory and prognostic uncertainty (risk of sudden death) Failure to identify dying (*) Public perception of a benign disease as opposed to cancer Compromised patient understanding of poor prognosis Inadequate communication among staff and between staff and patients Interdisciplinary collaboration (**) Dalgaard et al. (2014). Palliative and Supportive Care. Early online. (*) Oishi & Murtagh (2014). Palliative Medicine. Early online. (**) Wotton, Borbasi, Redden (2005). Journal of Cardiovascular Nursing. 20(1):

8 Fallacy II: Palliative care cardiovascular diseases «Palliative care is the promotion of physical and psycho-social health, regardless of diagnosis and prognosis» Howlett (2011). Current Opinions in Cardiology. 26:

9 Symptom Burden Symptom burden in advanced heart disease = symptom burden in advanced cancer disease Pain, fatigue, breathlessness Particularly universal and frequent symptoms Insomnia and anorexia Recurrent symptoms Solano et al. (2014). Journal of Pain and Symptom Management. 31(1):

10 Frequent symptoms in palliative cardiovascular patients Symptom class Physical Social / functional Psychological Examples Dyspnea, (chest) pain, edema, fatigue, persistent cough, sleeping problems, exercise intolerance, gout, pruritus, muscle cramps, anorexia, nausea, constipation Falls, incontinence, trouble walking, limitations in physical activity, loss of independence in performing activities of daily living Anxiety, panic attacks, depression, cognitive impairment Jaarsma et al. (2009). European Journal of Heart Failure. 26: Howlett (2011). Current Opinions in Cardiology. 26:

11 Significant resources in palliative care Interprofessional collaboration Collective action oriented toward a common goal, in a spirit of harmony and trust D Amour et al. (2005). Journal of Interprofessional Care. 19(Suppl1): Interactions between nurse and physician that enable the knowledge and skills of both professions to synergistically influence the patient care Weiss & Davis (1985). Journal of Nursing Research. 34(5): Viewed as a critical factor in achieving positive patient outcomes ( morbidity and mortality, LOS, costs) Nelson et al. (2008). Medsurg Nursing. 17(1):

12 Common concepts in interprofessional collaboration Common concepts Sharing Partnership Interdependency Power Process Shared responsibilities, decision-making, health care philosophy, values, data, planning and intervention Collaborative undertaking, characterized by a collegial-like, authentic and constructive relationship in persuading a set of common goals Mutual dependency vs. autonomy arising from a common desire to address the patient s needs Simultaneous empowerment of each participant whose respective power based on knowledge and experience is recognized by all Dynamic and interactive process D Amour et al. (2005). Journal of Interprofessional Care. 19(Suppl.1):

13 Core contributions to interprofessional collaboration Nurses Active and assertive contribution to the interaction Clarification of mutual expectations regarding shared responsibilities in patient care Physicians Establishing consensus with nurses regarding mutual responsibilities and patient care goals Acknowledgement of the importance of nurses unique contributions to patient care Weiss & Davis (1985). Journal of Nursing Research. 34(5):

14 Key features in interprofessional collaboration Active and assertive contribution of each party Receptivity to and respect for the other party s contribution A negotiating process building upon the contributions of both parties to form a new way to conceptualize the problem Weiss & Davis (1985). Journal of Nursing Research. 34(5):

15 When does palliative care in heart failure patients begin and who has to start it? Principal aim of palliative care: to prevent and relieve suffering and to promote the best quality for patients and their families Jaarsma et al. (2009). European Journal of Heart Failure. 11: Integration of palliative care with conventional heart failure care that emphasizes life-prolonging treatment. Duality of care should be considered a normal approach to heart failure patients Hauptman & Havranek (2005). Archives of Internal Medicine. 165:

16 Assist device as destination therapy Improved survival Technical care (functioning, alarms, infection, prevention) in addition to heart failure self-care Psychological and social issues Point of withdrawal of assist device support Ben Gal & Jaarsma (2013). Current Opinions in Supportive and Palliative Care. 7:

Adequate symptom management in palliative care Collective action Addressing the illness trajectory Duality of conventional and palliative care Based on patients and families needs and priorities

17 Adequate symptom management in palliative care Collective action Addressing the illness trajectory Duality of conventional and palliative care Based on patients and families needs and priorities Adjusting to limitations and future course of disease Alleviation of symptoms Bekelman et al. (2011). Journal of Palliative Medicine. 14(12): Gadoud, Jenkins, Hogg (2013). Palliative Medicine. 27(9):

18 «Difficult discussions now will simplify difficult decisions in the future» Allen et al. (2012). Circulation. 2012;125:

Walking together: Palliative Care and heart failure.

Walking together: Palliative Care and heart failure. St Paul's Hospital Heart Function Supportive Care Clinic Cindy Nordquist MN-NP(F) Objectives Review heart failure. Review palliative care/ palliative