Nova Scotia Hospice Nova Scotia Hospice Palliative Care Palliative Care

AssociationAssociation

Annual Conference 2011Annual Conference 2011

“ROOTS, REALITY & “ROOTS, REALITY & REACHING OUT”REACHING OUT”

Nova Scotia Hospice Nova Scotia Hospice Palliative Care Association Palliative Care Association

ConferenceConference

Hospice Palliative Care: Hospice Palliative Care: Roots, Reality and Roots, Reality and

Reaching OutReaching Out

BEING LEADERS, SHAPING CHANGE

13 May 2011

MY ASSUMPTIONMY 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.

TEACH THE SEA’S STRONG TEACH THE SEA’S STRONG VOICEVOICE

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

TEACH THE SEA’S STRONG VOICE TEACH THE SEA’S STRONG VOICE TO LEARN THE HARMONIES TO LEARN THE HARMONIES

OF NEW FLOODS OF NEW FLOODS

OVERVIEW OF REFLECTIONSOVERVIEW OF REFLECTIONS

The Sea’s Strong Voice: Knowing present reality

New Floods: Hospice palliative care

Harmonies of New Floods: Personal readiness to be leadersPassion: Personal Response

THE SEA’S STRONG VOICETHE SEA’S STRONG VOICE

CHANGES IN WESTERN SOCIETYCHANGES 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

FOUR ADULT GENERATIONSFOUR 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

PERCENTAGE OF CANADIAN POPULATION COMPRISED OF PERCENTAGE OF CANADIAN POPULATION COMPRISED OF PERSONS AGED 65 OR OLDER, 1921 TO 2005 PERSONS AGED 65 OR OLDER, 1921 TO 2005

AND PROJECTIONS TO 2056AND PROJECTIONS TO 2056SOURCES: STATISTICS CANADA, CENSUSES OF CANADA; POPULATION PROJECTIONS SOURCES: STATISTICS CANADA, CENSUSES OF CANADA; POPULATION PROJECTIONS

FOR CANADA, PROVINCES AND TERRITORIES.FOR CANADA, PROVINCES AND TERRITORIES.

CHANGING FACE OF FAMILYCHANGING 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

CHANGING PROFESSIONSCHANGING 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

UNDERSTANDING OF HEALTHUNDERSTANDING 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 determinantHealth of person, family, community, population and earth

Economist Intelligence Unit’s Economist Intelligence Unit’s “Quality of Death Index” (2010)“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)

EIU INDEX: KEY FACTORS EIU INDEX: KEY FACTORS

IN QUALITY OF DEATHIN 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.

EIU REPORT FINDINGSEIU REPORT FINDINGSCombating 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.

NEW FLOODSNEW FLOODS

HOSPICE PALLIATIVE CARE HOSPICE PALLIATIVE CARE VALUESVALUES

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

HOSPICE PALLIATIVE CARE HOSPICE PALLIATIVE CARE GUIDING PRINCIPLESGUIDING 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

HOSPICE PALLIATIVE CAREHOSPICE PALLIATIVE CARECOMMITMENTSCOMMITMENTS

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

HOSPICE PALLIATIVE CAREHOSPICE PALLIATIVE CARECOMMITMENTSCOMMITMENTS

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

HOSPICE PALLIATIVE CAREHOSPICE PALLIATIVE CARECOMMITMENTSCOMMITMENTS

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

CHARACTERISTICS OF CHARACTERISTICS OF PALLIATIVE CAREPALLIATIVE 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

HOSPICE PALLIATIVE CAREHOSPICE PALLIATIVE CARECHALLENGESCHALLENGES

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

KEY MESSAGESKEY MESSAGESHospice 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)

NSHPCA MISSIONNSHPCA 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.

HARMONIES OF NEW FLOODSHARMONIES OF NEW FLOODS

ROLES OF LEADERSROLES OF LEADERS

Visionary Catalyst PartnerDecision-maker InspirerFacilitator   Implementer Evaluator

ELEMENTS OF ELEMENTS OF RESPONSERESPONSE

VisionValuesRelationshipsEthical LeadershipValue of TraditionCelebration

ELEMENTS OF ELEMENTS OF RESPONSERESPONSEVision = 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?

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

PASSIONPASSION

LEADERS FOR TODAY LEADERS FOR TODAY & TOMORROW& 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

LEADERS FOR TODAY LEADERS FOR TODAY & TOMORROW& 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.

LEADERS FOR TODAY LEADERS FOR TODAY & TOMORROW& TOMORROW

• Awareness of complexity• Skills development• Strengths of tradition• Emotional preparedness• Reflection• Ceremonies and celebration• Symbols• Confidence/conviction

LEADERS ACT WISELYLEADERS ACT WISELY

With KnowledgeAt all Levels

◦ Strategically◦ Tactically◦ Operationally

CollaborativelyRooted in tradition but

not bound by the past

LEADERS ACT LEADERS ACT COURAGEOUSLY COURAGEOUSLY

• As catalysts• Knowing vulnerability• Caring for self and others• Daring to be ethical

LEADERS ACT LEADERS ACT PASSIONATELYPASSIONATELY

• Intentionally• Persistently• Relationally• With celebration

NEW NEW JOURNEY, NEW PROMISE

The Seven Of PentaclesThe 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)

BEANNACHT BEANNACHT ("Blessing")("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.

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