Transcript Slide 1

Nova Scotia Hospice
Palliative Care Association
Annual Conference 2011
“ROOTS, REALITY &
REACHING OUT”
Nova Scotia Hospice Palliative
Care Association Conference
Hospice Palliative Care: Roots,
Reality and Reaching Out
BEING LEADERS, SHAPING CHANGE
13 May 2011
MY ASSUMPTION
In the second decade of this twentyfirst 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 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
TEACH THE SEA’S STRONG VOICE
TO LEARN THE HARMONIES
OF NEW FLOODS
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
THE SEA’S STRONG VOICE
CHANGES IN WESTERN SOCIETY
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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 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, technoliteracy, fun, informality, self-reliance,
pragmatism
• Millennials (1980 - ): Confidence, civic
duty, achievement, sociability, morality,
diversity, street smarts
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PERCENTAGE OF CANADIAN POPULATION COMPRISED OF
PERSONS AGED 65 OR OLDER, 1921 TO 2005
AND PROJECTIONS TO 2056
SOURCES: STATISTICS CANADA, CENSUSES OF CANADA; POPULATION PROJECTIONS FOR
CANADA, PROVINCES AND TERRITORIES.
CHANGING FACE OF FAMILY
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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 PROFESSIONS
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Advances in science and technology
Growing educational opportunities
Greater understanding of importance of
culture in which profession is practiced
Shift from profession-centred to clientcentred 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 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
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)
EIU INDEX: KEY FACTORS
IN QUALITY OF DEATH
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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 FINDINGS
Combating perceptions of death, and cultural
taboos, is crucial to improving palliative care.
 Public debates about euthanasia and physicianassisted 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.
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NEW FLOODS
HOSPICE PALLIATIVE CARE
VALUES
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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 selfactualization
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
GUIDING PRINCIPLES
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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 CARE
COMMITMENTS
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To relieve suffering and improve the quality of living
and dying.
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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 CARE
COMMITMENTS
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To treat all active issues
• prevent new issues from occurring
• promote opportunities for meaningful and
valuable experiences, personal and spiritual
growth, and self-actualization
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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
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Complement and enhance disease-modifying
therapy or become the total focus of care
CHPCA: A Model To Guide Hospice Palliative Care
HOSPICE PALLIATIVE CARE
COMMITMENTS
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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
PALLIATIVE CARE
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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 CARE
CHALLENGES
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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 MESSAGES
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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)
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.
HARMONIES OF NEW FLOODS
ROLES OF LEADERS
 Visionary
 Catalyst
 Partner
 Decision-maker
 Inspirer
 Facilitator
 Implementer
 Evaluator
ELEMENTS OF RESPONSE
 Vision
 Values
 Relationships
 Ethical
Leadership
 Value of Tradition
 Celebration
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?
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
PASSION
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
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LEADERS FOR TODAY
& TOMORROW
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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
& TOMORROW
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Awareness of complexity
Skills development
Strengths of tradition
Emotional preparedness
Reflection
Ceremonies and celebration
Symbols
Confidence/conviction
LEADERS ACT WISELY
With Knowledge
 At all Levels
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◦ Strategically
◦ Tactically
◦ Operationally
Collaboratively
 Rooted in tradition but not
bound by the past
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LEADERS ACT
COURAGEOUSLY
As catalysts
• Knowing vulnerability
• Caring for self and others
• Daring to be ethical
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LEADERS ACT
PASSIONATELY
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Intentionally
Persistently
Relationally
With celebration
NEW JOURNEY, NEW PROMISE
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)
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.
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