Home Hospice Association’s approach to helping meet the need of communities who are among the 70 to 84% with no available hospice or palliative care began with an environmental scan that included research utilizing:
And more recently: Canadian Cancer Society - Palliative Care Report
The Case for Hospice Care
No one gets out of life alive. There is little balance within the Canadian Health Care System between a focus on curing illness and supporting those for whom there is no cure. The medical community is trained to save lives and hospitals are set up to save lives, not to comfort the dying and those who love them. The balance between comfort and cure that hospice brings profoundly impacts Canadians; their family and work life as well as the overall health and social fabric of this country. Hospice Care may: help diagnosed individuals to still live a productive existence, provide economic growth for holistic and alternative therapy modalities, lessen how stress impacts the work place resulting in fewer sick days (Stats Canada reports that stress impacts the economy by 4.5 Billion dollars each year), make the Compassionate Care Benefit more effective, ease the burden on the mental health system by caring for those needing grief counselling, and help to solve the challenges of hospital overcrowding.
69% of Canadians are dying in the hospital and when a hospital bed is being used by a dying person someone is waiting for curative care. If a dying person is taking up a hospital bed, someone is in emergency…waiting. 84% of people who die of cancer visited emergency in the last six months of life, 40% visited emergency in the last two weeks.
On Death and Dying in Canada
1,470 Canadians (on average) die of cancer each week, 1,379 Canadians (on average) die of a circulatory system disease each week, 245,000 Canadians (on average) die each year, Canada has the world’s third-highest rate of mortality due to diabetes, A 33% increase in deaths is anticipated by 2020.
Defining a Community
Home Hospice Association serves those who fall within the definition of community:
· A social group of any size whose members reside in a specific locality, share government, and often have a common cultural and historical heritage
· A locality inhabited by such a group
A social, religious, occupational, or other group sharing common characteristics or interests and perceived or perceiving itself as distinct in some respect from the larger society within which it exists.
Home Hospice Association’s research concluded that where someone lives nor the size of their bank account should dictate what hospice care may be available to them. No one should have to leave their home to find compassionate, non-judgemental and dignified hospice care, regardless of
what or where they define as home. Creating a solution that would result in Home Hospice Associations across Canada meant an environment and a philosophy of hospice care will be available in any community.
It continues to be important to define community, not just as geography, but also as a spiritual, social or cultural environment ultimately every Canadian, regardless of where or what they call home, will receive the care they need and deserve.
Hospice is not a place, but a concept for healthcare delivery to those dealing with life-limiting illness. Through a range of medical, nursing, psychosocial, and spiritual care, provided by an interdisciplinary team of experts, hospice seeks to manage symptoms and provide comfort. “Life limiting illness” may include all forms of cancer, Congestive Heart Failure, COPD and neurological illnesses such as Alzheimer’s and ALS. In addition to the diseases children ‘share” with adults, children die from far more “rare” diseases. By hospital definition, hospice is for patients whose medical condition is so complex that they need care by multiple health care disciplines.
Home Hospice Association meets the misconception head on by promoting a “for anyone” philosophy of care. Home Hospice Association Communities support any person diagnosed with a life-limiting illness.
Hospice vs Palliative Care
The words hospice and palliative are often used interchangeably. The Ministry of Health (and Long-Term Care) deems a patient as palliative when they are in their last year of life. Hospice supports a person (and those who love them) from the time of diagnosis. It is less interested in when someone is going to die and more interested in how they are to live with a diagnosis.
Someone may live 30% longer if offered hospice care at the point of diagnosis (as opposed to in their last year of life) for those times when:
treatment, care and endless medical interactions are becoming physically and emotionally draining,
emotions are low and a “vacation from illness” is needed,
when help is needed to return to wellness because treatment has been successful,
curative options have been exhausted and the doctor suggests it is time to put affairs in order,
it appears there may just be days or weeks left,
families decide that the time remaining needs to be spent engaging in quality moments (which requires having others attend to the basic needs of food, shelter and cleanliness),
during those final days and weeks when the mystery of life becomes a topic that may be important to explore,
someone is “actively dying”,
a grieving family member requires emotional and spiritual support
Home Hospice Care can step back in to help families spend time engaging in quality moments, to ensure no one is alone through the dying experience and to support those who are faced with getting back to a living experience.
Hospice is not just for the person who has received a diagnosis, it is also for those who love them.
One terminal diagnosis intimately affects 5 additional Canadians, who are
feeling scared and helpless after hearing the news of a loved one’s diagnosis,
exhausted from being the primary caregiver with no support or respite (76% of Canadians caring for a terminal loved one feel in need of help)
trying to emotionally prepare for an imminent death absent of coping strategies,
putting their own grief aside to help their loved one achieve a peaceful death
experiencing a loss and having trouble getting back to a “living existence”.
26 weeks of Compassionate Care Benefits (based on eligibility) are available but it does not solve all problems. “How do I know when it will be the right time to use these 26 weeks?” is the most common question with regard to how the benefit helps ease the burden of care.
Terminal illness does not discriminate based on age, sex, social or professional status.
Over 3 million Canadians of all ages have a serious respiratory disease; Ontarians 30 to 50 years old use the majority of health care dollars; 23,000 Oncology Clinic visits were reported by Sick Kids in 2009-2010; 2 children (on average) die each week of cancer; 5 / 1000 Children under the age of one die each year.
In addition to the diseases children “share” with adults, children die from far more “rare” diseases. Only 5 hospices exist in Canada that can help a child through their dying experience. In fact most children die in the hospital because their parents are not able to handle the stress of administering pain medication at a rate that keeps their child comfortable. Home Hospice Association is solving this problem by making sure that all programs including In Home Hospice respect the need for a peaceful, comfortable and dignified dying experience regardless of age; including in a situation when a baby will be stillborn. Birth and death happen in the same moment when a mother delivers a baby who is born still. Home Hospice Association allows the family to safely bring the baby into the world and do what is necessary for them to solidify a relationship that will live on only in their memories.
State Of The Union for the Toronto Central Palliative Care Network
- S. Lawrence Librach, MD
Very few of us in Canada will die from an accident. Most will live a long life and near the end of life deal with one or more chronic illnesses. One in five Canadians have three or more chronic diseases. Ninety percent of disability related costs are related to chronic disease. The reality is that as we age as a society more people will die at a greater rate. What will the end of life care be like for us? Unless changes are made end of life care will be chaotic and patients will deal with invasive measures that are unwarranted instead of their pain being dealt with effectively. Improvements are needed in the referral process to palliative care and hospice services and the waiting times need from ER to hospice needs to improve. (Read on...)
Determining Home Hospice Association’s Care Model
Visionary leadership and cutting edge thinking has created programs based on the perspective that:
There is not enough (hospice) care in any community
Everyone has the right to live a meaningful and productive life regardless of diagnosis or prognosis
Emotional and spiritual support must be available from the moment of diagnosis
The more supported family and friends feel the better support they will be for their loved one
Someone leaving hospice care because they are on the road to wellness is a great “win”
No one should have to journey the dying process alone
Size of bank account should not dictate level of care
How Home Hospice Association’s Care Model Works
It takes a village to raise a child. That same village has a moral and ethical responsibility to guide their own in the dying experience. Through the spirit of collaboration, this care model ensures no man, woman or child will have to leave their “home” to find free, quality hospice care. By helping patients, those who love them and supporting members of their community form genuine bonds, this care model builds peace of mind. Everyone knows they are in good hands and that no one will be alone when death occurs.
When the co-founders of Home Hospice Association were asked if this care model is necessary…the answer is “to the point”:
Everyone will die
We all want a peaceful, dignified and comfortable death
Most of us cannot afford the death we desire
The government will never be able to fund the kind of death we desire
The attention paid to curing illness versus supporting those for whom there is no cure is unbalanced. The medical community is trained to save lives and hospitals want to save lives, yet 60% of hospital deaths are from terminal illness.
The Environmental Scan clearly shows Home Hospice Association must get involved in communities where end of life care does not currently exist. The current state of hospice / palliative care can be described as sporadic; at best. Even large metropolitan areas like the city of Toronto have many areas such as Etobicoke and North York that do not meet the needs of the communities. This same challenge is especially prevalent in small and under-serviced areas with challenging demographics.