Transcript Palliative Care is Comprehensive…

Nova Scotia Hospice
Palliative Care Association
• Grassroots group of health professionals
and volunteers working to improve
palliative care services in our province
1
Palliative Care…
…is care that aims to relieve suffering and
improve the quality of living and dying for
persons of all ages with advanced illness, and
their families. This extends beyond death to
include bereavement
2
Palliative Care is Comprehensive…
…it draws on the expertise of many health
professionals including doctors, nurses, social
workers, pharmacists, volunteers, spiritual
leaders, etc.
3
Palliative Care is Collaborative…
…patients, families and the team providing
care support each other and make
decisions together
4
“The nurses checked-in regularly and they managed
her pain. Marilyn was very heavily sedated by this
point, but she seemed to relax more on the palliative unit. I
think she would have fought death on the cancer unit, but she
accepted it on the palliative unit. At the end, I was able to lay
with her and hold her in my arms as she slipped away.”
-Tony’s wife of 37 years died in
the QEII Palliative Care Unit
5
The Current Situation…
•
Palliative care is not delivered where people want it and need it
•
There is no single point of access to gain entry into the system
•
No consistent minimum standards of care in Nova Scotia and spotty
quality assurance
•
Not enough appropriately trained and educated palliative care
providers
•
Not enough designated palliative care beds (hospital and community)
6
The Impact…
• 80% of us want to die at home, but 70% of us are forced to die
in hospital
• 80% of Canadians do not have access to formal palliative care
services and many of them are in Nova Scotia where we do
not have a province-wide program
7
The Impact…
• Medications are covered if you die in hospital, but not if you
die at home. This means the last choice people ever make is
often based on their pocket book and not their preference
• Palliative care is only available in certain communities at
certain times of day. Where you live and when you die
determines the level of care you do or don’t receive
• It may be your elderly parent or your child who is impacted
by these inequities
8
The Impact…
• In some parts of Nova Scotia people are dying on palliative
care waiting lists
• If a family can’t provide palliative care in Nova Scotia,
patients are sent into long-term care and the 100 km rule
applies. This means people (including children) are sometimes
forced to die an hour’s drive from their homes and families
9
The Impact…
“I lost her and I lost my faith. The system let Marilyn down. I
wasn’t able to say a proper goodbye because I was too busy
fighting to get her proper care. We never even got to talk about
her dying. We didn’t get to have so many conversations that we
would have, had she been in a proper palliative care environment
from the start. I am left with so many questions.”
-Tony’s wife of 37 years died in the
QEII Palliative Care Unit after spending
much of her illness in the cancer unit because
there was no room for her in the
Palliative Program
10
Conclusions…
• Palliative care is important because everyone deserves to have a
good death. Even though we don’t like to think about it, this
issue matters to every single one of us
• Our system is not fair and it is not working
• The solution is clear. We need a comprehensive province-wide
palliative care program
11
Support for Province-Wide Palliative Care…
• There have been years of studies, projects, committees and
reports on palliative care in Nova Scotia
• The government’s most recent report, the Provincial Hospice
Palliative Care Project Report (October 2005) contains a roadmap
and a framework for a province-wide program that we fully
support
• Government has repeatedly promised to implement their
Report, but nothing has happened
12
Why Hasn’t Change Happened?
“The dead are no longer here to speak, the dying
often cannot speak, and the bereaved are often too
overcome to speak.”
-Dr. Harvey Chochinov
13
How Will We Achieve Change?
• We will advocate and lobby
• We will tell our story to the media and public
• We will leverage grassroots support for change
14
How Will We Achieve Change?
Phase One: Help Them Understand
• Education of partners and public
Phase Two: Make Them Care
• News conferences and public awareness campaigns
Phase Three: Inspire Change
• Aggressive lobbying and persuasive public events
15
What Will Success Look Like?
•
Government creates a comprehensive province-wide palliative care
program
•
Palliative care is available in every community: 24 hours a day, 7
days a week
•
People can choose whether to die at home, in the hospital or in a
nursing home
•
A child can choose to die at home or in the hospital and their family
feels equally supported in each setting
•
Every patient and family feels cared for and supported in life, death
and bereavement
16
What Will Success Look Like?
•
Trained, specialized multi-disciplinary teams of staff work together to
provide excellent palliative care with the proper equipment, resources
and programs to support their work
•
Every person (from children to elderly) with a life-threatening illness is
provided with the support they need to live out their lives to the fullest
•
Government funds and appoints a provincial Director of Palliative
Care within the Department of Health to ensure the success of the new
province-wide program
•
Government funds and appoints a Manager/Director of Palliative
Care in every health district
17
How Can You Support Us?
• Write to the Minister of Health, the Premier and your MLA
• Have your association, group, hospital or district write to the
Minister of Health, the Premier and your MLA
• Meet with your local MLA on this issue
• Write a Letter to the Editor
18
How Can You Support Us?
• Allow us to submit an Open Letter or Feature Story to your
newsletter
• Be our champions in your community
• Sign-up for our advocacy e-mail update list
• Support our upcoming public activities whenever and
wherever you can
19
Palliative Care Matters….
…Because Everyone Deserves a
Good Death
20