A local group of concerned citizens is hoping to make end of life care more accessible in St. Albert. The St. Albert Sturgeon Hospice Association is working to develop a local hospice, either a facility all on its own or a dedicated amount of space within another facility.
"We're still in the process of determining what kind of facility and where it's going to be," explained Johanna Buisman, a nurse with the Primary Care Network who also volunteers on the steering committee for SASHA. "We've gotten really far. We're pretty excited about our progress."
Hospice care, according to Alberta Health's websiteMyHealth.Alberta.ca, provides "medical services, emotional support, and spiritual resources for people who have illnesses that do not go away and often get worse over time and for people who are in the last stages of a serious illness, such as cancer or heart failure."
SASHA's mission is to "establish a space for enhanced compassionate end of life care for community members and their loved ones," Buisman said. She added that it is there for people suffering from either acute or chronic illnesses such as COPD or cancer, or those who are elderly or are experiencing increasing frailty.
It also takes into account the needs of family members who are managing the practical and emotional circumstances around the care of their dying loved one.
Buisman said that many people have expressed their interest for more hospice beds in the St. Albert and Sturgeon area, especially since there is only one bed located at Youville Home. If home care is not preferred for whatever reason then a hospice, not a hospital, should be the next best option.
SASHA is working to acquire 10 beds in St. Albert. The greater Edmonton region has only approximately 60 beds in institutions including the Edmonton General Hospital, the Norwood facility or St. Joseph's Hospice. Calgary has many more beds than we do, she said.
Chris Guest is a former palliative home care nurse and current SASHA research committee member. She recently attended a SASHA meeting during which Dr. Robin Fainsinger, Director of the Edmonton Zone Palliative Care Program, stated that there should be 7.7 hospice beds per 100,000 population. That calculation came according to a recommendation by the Alberta Health Services' Palliative and End of Life Care Provincial Framework.
There are currently more than 1.1 million people in the metropolitan area, meaning that there should be 85 beds.
Local residents who require hospice care most often have to access that care either at home or in Edmonton-based facilities. Home care offers a multidisciplinary team of health professionals to assist families and patients to facilitate a home death.
"Even with all these resources available the patient may still require hospice care for a variety of reasons," stated Guest. Travelling to a hospice facility, however, can mean a tough situation made even tougher.
"End of life care sometimes gets very difficult for a family to manage and symptoms are harder to manage. Often people end up in a hospice for only a week or two. All of a sudden, we're bringing these people into the city and families have to travel a distance for that. It becomes an issue. It's a big disruption for people."
Setting the record straight
The Canadian Hospice Palliative Care Association has designated National Hospice Palliative Care Week from May 4 to 10. SASHA is taking the opportunity to dispel myths and make the truth plain about hospice care. Its website at www.chpca.net says that it's a myth that hospice palliative care is only for seniors and can only be obtained in a hospital setting.
In fact, it says that hospice is for people of any age group. It also provides statistics that demonstrate that most people prefer to pass away at home "yet almost 70 per cent of Canadian deaths occur in a hospital."
Receiving hospice care also doesn't mean that you'll die soon, the website continues. It isn't just for the final days and months of life. "It's a holistic approach that includes pain and symptom management, caregiver support, spiritual care, bereavement and much more."
Strength in numbers
SASHA is also using the week to promote and keep the need for enhanced end-of-life care in the public eye, something that should be easier, thanks to some recent strides that it has taken.
The group has been rallying its forces since its inception last fall and has already managed to become incorporated as a society in the province a month ago, which gives it charitable status for fundraising and being able to accept members, something that it is very keen to do.
"You need to be an organization to gather people around you and to get momentum in a community."
Other resources – including details about financial assistance through the Canadian Cancer Society – can be found through the Alberta Hospice Palliative Care Association's website at www.ahpca.ca.
People can contact SASHA via email at [email protected] for more information or to become members.
