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Nova Scotia Hospice Palliative Care Association

• Grassroots group of health professionals and volunteers working to improve palliative care services in our province

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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

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Palliative Care is Comprehensive…

…it draws on the expertise of many healthprofessionals including doctors, nurses,

social workers, pharmacists, volunteers, spiritualleaders, etc.

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Palliative Care is Collaborative…

…patients, families and the team providing care support each other and make decisions together

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“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 laywith her and hold her in my arms as she slipped away.”

-Tony’s wife of 37 years died in the QEII Palliative Care Unit

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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)

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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

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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

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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

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The Impact…

“I lost her and I lost my faith. The system let Marilyn down. Iwasn’t able to say a proper goodbye because I was too busyfighting to get her proper care. We never even got to talk abouther dying. We didn’t get to have so many conversations that wewould have, had she been in a proper palliative care

environmentfrom the start. I am left with so many questions.”

-Tony’s wife of 37 years died in the QEII Palliative Care Unit after spendingmuch of her illness in the cancer unit because there was no room for her in the Palliative Program

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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

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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

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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

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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

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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

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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

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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

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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

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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

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Palliative Care Matters….

…Because Everyone Deserves aGood Death