BEING LEADERS, SHAPING CHANGE 13 May 2011

1. Nova Scotia Hospice Palliative Care AssociationAnnual Conference 2011“ROOTS, REALITY & REACHING OUT”

2. Nova Scotia Hospice Palliative Care Association Conference‏Hospice Palliative Care: Roots, Reality and Reaching Out BEING LEADERS, SHAPING CHANGE 13 May 2011

3. MY ASSUMPTION In the second decade of this twenty-first century, we are called to see with new eyes to hear with new ears to dare with new thinking to act with new courage if we are to help create truly strong, secure and responsive hospice palliative care services for Canadians.

4. TEACH THE SEA’S STRONG VOICE Here the tides flow, And here they ebb . . . With a lusty stroke of life Pounding at stubborn gates That they might run Within the sluices of men’s hearts, Leap under throb of pulse and nerve, And teach the sea’s strong voice To learn the harmonies of new floods . . . E. J. Pratt, Newfoundland

5. TEACH THE SEA’S STRONG VOICE TO LEARN THE HARMONIES OF NEW FLOODS

6. OVERVIEW OF REFLECTIONS • The Sea’s Strong Voice: Knowing present reality • New Floods: Hospice palliative care • Harmonies of New Floods: Personal readiness to be leaders Passion: Personal Response

7. THE SEA’S STRONG VOICE

8. CHANGES IN WESTERN SOCIETY • Demographic shifts • Role of women • Changing face of family • Ethnic, cultural and religious diversity • Increasing urbanization • Impact of technology • Culture of consumerism • Reality of violence/abuse • Increasing gap between rich and poor • Health of the environment • Impact of globalization

9. FOUR ADULT GENERATIONS • Elders (pre-1946): Dedication, sacrifice, hard work, conformity, law and order, patience, respect for authority, duty before pleasure, adherence to rules, honour • Boomers (1946-1965): Optimism, teamwork, personal gratification, health and wellness, personal growth, youth, work, involvement • Generation X (1965 – 1980): Diversity, thinking globally, balance, techno-literacy, fun, informality, self-reliance, pragmatism • Millennials(1980 - ): Confidence, civic duty, achievement, sociability, morality, diversity, street smarts

10. PERCENTAGE OF CANADIAN POPULATION COMPRISED OF PERSONS AGED 65 OR OLDER, 1921 TO 2005 AND PROJECTIONS TO 2056SOURCES: STATISTICS CANADA, CENSUSES OF CANADA; POPULATION PROJECTIONS FOR CANADA, PROVINCES AND TERRITORIES.

12. CHANGING FACE OF FAMILY • Common-law couple families increased 20% since 2001, almost 60% of first unions are common law • Lone parent families increasing now nearly 1/5 of families in many large cities • Significant increase in same-sex couples • More census families comprised of couples without children (42.7%) than with children (41.4%). • 43.5% of young adults aged 20 to 29 live at home • Custody of less than half of dependents (47.7%) in divorce proceedings awarded to the mother, down from three-quarters (78.2%) in 1980 • Members of lone-parent families 2X more likely to live in low income neighbourhood

13. CHANGING PROFESSIONS • Advances in science and technology • Growing educational opportunities • Greater understanding of importance of culture in which profession is practiced • Shift from profession-centred to client-centred culture • Move from traditional inward-looking, reactive culture to outward-looking, proactive culture • Focus on evidence-informed practice • Internationalization • Increasing demands for accountability and transparency

14. UNDERSTANDING OF HEALTH Health is a state of complete physical, emotional, social and spiritual well-being; it is a resource for everyday living. Implications: • Value of one’s own experiences • Social, psychological and spiritual factors • Gender as health determinant • Health of person, family, community, population and earth

15. Economist Intelligence Unit’s “Quality of Death Index” (2010) Ranks 40 countries in terms of the quality and availability of end-of-life care “End-of-life care” in this report includes palliative care but also refers to broader social, legal and spiritual elements of care relevant to quality of death Canada’s ranking: • Basic end-of-life healthcare environment (20) • Availability of end-of-life care (9) • Cost of end-of-life care (27) • Quality of end-of-life care (5) • Public awareness of end-of-life care (3) • Overall score (9)

16. EIU INDEX: KEY FACTORS IN QUALITY OF DEATH • Dealing with cultural taboos • Public education in end-of-life care • Sufficient funding • High-level political commitment • Coordinated policy • Laws to allow access to pain-killing drugs • Training of doctors and nurses DYING WELL IS STILL A PRIVILEGE.

17. EIU REPORT FINDINGS • Combating perceptions of death, and cultural taboos, is crucial to improving palliative care. • Public debates about euthanasia and physician-assisted suicide may raise awareness, but relate to only a small minority of deaths. • Drug availability is the most important practical issue. • State funding of end-of-life care is limited and often prioritizes conventional treatment. • More palliative care may mean less health spending. • High-level policy recognition and support is crucial. • Palliative care need not mean institutional care, but more training is needed.

18. NEW FLOODS

19. HOSPICE PALLIATIVE CARE VALUES • Intrinsic value of each person as an autonomous and unique individual • Value of life, natural process of death, both providing opportunities for personal growth and self-actualization • Need to address patients’ and families’ suffering, expectations, needs, hopes and fears • Care only provided when the patient and/or family prepared to accept it • Care guided by quality of life as defined by the individual • Caregivers in therapeutic relationship with patients and families based on dignity and integrity • Unified response to suffering strengthens communities CHPCA: A Model To Guide Hospice Palliative Care

20. HOSPICE PALLIATIVE CARE GUIDING PRINCIPLES • Patient/Family Focused • High Quality • Safe and Effective • Accessible • Adequately Resourced • Collaborative • Knowledge-Based • Advocacy-Based • Research-Based CHPCA: A Model To Guide Hospice Palliative Care

21. HOSPICE PALLIATIVE CARECOMMITMENTS • To relieve suffering and improve the quality of living and dying. • To help patients and families • address physical, psychological, social, spiritual and practical issues, and their associated expectations, needs, hopes and fears • prepare for and manage self-determined life closure and the dying process • cope with loss and grief during the illness and bereavement CHPCA: A Model To Guide Hospice Palliative Care

22. HOSPICE PALLIATIVE CARECOMMITMENTS • To treat all active issues • prevent new issues from occurring • promote opportunities for meaningful and valuable experiences, personal and spiritual growth, and self-actualization • Appropriate for any patient and/or family living with, or at risk of developing, a life-threatening illness due to any diagnosis, with any prognosis, regardless of age, and at any time they have unmet expectations and/or needs, and are prepared to accept care • Complement and enhance disease-modifying therapy or become the total focus of care CHPCA: A Model To Guide Hospice Palliative Care

23. HOSPICE PALLIATIVE CARECOMMITMENTS • Most effectively delivered by an interdisciplinary team of healthcare providers both knowledgeable and skilled in all aspects of the caring process related to their discipline of practice • Typically trained by schools or organizations that are governed by educational standards. • Accountable to standards of professional conduct that are set by licensing bodies and/or professional associations CHPCA: A Model To Guide Hospice Palliative Care

24. CHARACTERISTICS OF PALLIATIVE CARE • Holistic= comprehensive, interdisciplinary, does not end with death – care for bereaved • Respect= vulnerability of patients and loved ones, pain management and treatment of symptoms • Reflection= spirituality and cultural specificities, time • Support= reduce strain for patients and families, emotional assistance as well as social and physical

25. HOSPICE PALLIATIVE CARECHALLENGES • Negative perceptions of death and dying • Failure to have conversations about preparation for death and dying • Geographic discrepancies and cultural variances • Failure to recognize diverse needs, e.g., Aboriginal, rural families, persons with disabilities, homeless persons, prisoners, persons with mental illness • Lack of a cohesive, integrated model • Considerable variability in the quality and availability of hospice palliative care • Many existing programs not comprehensive, unable to address all of the issues faced by patients and families • Access for only a small proportion of Canadians living with a life-threatening illness • Understanding the changing needs of patients and families • Keeping pace with new developments related to therapies • Ensuring common/cohesive understanding of hospice palliative care among professionals, public, policy-makers

26. KEY MESSAGES • Hospice palliative care is important and relevant to everyone and touches us all at some time in some way (90% die of protracted illness, less than 20% receive HPC, 30% advance health directive) • Hospice palliative care provides options that guide Canadians through dying and death (hospices, hospitals, nursing homes, personal care homes, at home;) • Hospice palliative care is holistic, integrated care (range of care = physical, emotional, spiritual, financial; communication skills; specific groups = Aboriginal, rural families, persons with disabilities, homeless persons, prisoners, persons with mental illness)

27. NSHPCA MISSION Our Mission is to achieve comfort and peace for persons living and dying with a life threatening illness throughout Nova Scotia. The Association exists to promote the philosophy and principles of palliative care through networking, public and professional education, advocacy and research.

28. HARMONIES OF NEW FLOODS

29. ROLES OF LEADERS • Visionary • Catalyst • Partner • Decision-maker • Inspirer • Facilitator • Implementer • Evaluator

30. ELEMENTS OF RESPONSE • Vision • Values • Relationships • Ethical Leadership • Value of Tradition • Celebration

31. ELEMENTS OF RESPONSE • Vision = what is your vision for hospice palliative care? • Values = what are the three most important values embedded in your vision? • Relationships = what are your key partnerships? Are they healthy? • Ethical Leadership = when did you most recently show ethical leadership? • Value of Tradition = how do you value your tradition? • Celebration = when and how do you celebrate the milestones on the journey?

32. I’m sittin’ on my stage-head lookin’ out at where Skipper Joe Irwin’s schooner is ridin’ at her moorin’ … thinkin’ about how weak are the things that try to pull people apart – differences in colours, creeds and opinion – weak things like the ripples tuggin’ at the schooner’s chain. And thinkin’ about how strong are the things that hold people together – strong, like Joe’s anchor, and chain, and the good holdin’ ground below. Ted Russell, The Holdin’ Ground

33. PASSION

34. LEADERS FOR TODAY & TOMORROW • Understand implications of diversity • Respond within changing social realities • Be inclusive/value networks • Understand globalization • Accept role in transforming research results into policy and practice • Tell stories • Create environments allowing creativity, questions, risk • Stretch into new ways of thinking

35. LEADERS FOR TODAY & TOMORROW • Be passionate, personal, persistent, and patient. Do not give up. • Be bold. Do not worry about those who think you are crazy. • People will go where value is added. • Hold up the mirror for others to see. • Try different things; small steps, early wins. If you fall, get back up. • To change the culture of the health care system, you must be willing to change yourself.

36. LEADERS FOR TODAY & TOMORROW • Awareness of complexity • Skills development • Strengths of tradition • Emotional preparedness • Reflection • Ceremonies and celebration • Symbols • Confidence/conviction

37. LEADERS ACT WISELY • With Knowledge • At all Levels • Strategically • Tactically • Operationally • Collaboratively • Rooted in tradition but not bound by the past

38. LEADERS ACT COURAGEOUSLY • As catalysts • Knowing vulnerability • Caring for self and others • Daring to be ethical

39. LEADERS ACT PASSIONATELY • Intentionally • Persistently • Relationally • With celebration

40. NEW JOURNEY, NEW PROMISE

41. The Seven Of Pentacles Weave real connections, create real nodes, build real houses.Live a life you can endure: Make love that is loving.Keep tangling and interweaving and taking more in,a thicket and bramble wilderness to the outside but to us interconnected with rabbit runs and burrows and lairs. Live as if you liked yourself, and it may happen:reach out, keep reaching out, keep bringing in.This is how we are going to live for a long time: not always,for every gardener knows that after the digging, after the planting, after the long season of tending and growth, the harvest comes. ~ Marge Piercy ~ (In Praise of Fertile Land, edited by Claudia Mauro)

42. BEANNACHT ("Blessing") May the light of your souls guide you. May the light of your souls bless the work that you do with the secret love and warmth of your hearts. May you see in what you do the beauty of your own souls. May the sacredness of your work bring healing, light and renewal to those who work with you and to those who see and receive your work. May your work never weary you. May it release within you wellsprings of refreshment, inspiration and excitement.

43. May you be present in what you do. May you never become lost in bland absences. May the day never burden. May dawn find you awake and alert, approaching your new day with dreams, possibilities and promises. May evening find you gracious and fulfilled. May you go into the night blessed, sheltered and protected. May your souls calm, console and renew you. Adapted from John O'Donoghue, Anam Cara