For most of us, dying is not something we want to spend a lot of time thinking about. Most of us, given our druthers, would prefer to exit the Earth in our sleep in the middle of a dream.
However, the reality is that for many of us, we're leaving the world as the result of a long-term illness for which there is no answer. We get a terminal diagnosis and our focus becomes comfort, not a cure. We wonder where we will be able to live out our remaining days pain free, surrounded by loved ones.
For those of us facing these weighty questions there is an answer - hospice.
This is a type of care that focuses on physical, emotional and, depending on the person, spiritual well-being of the patient. In a nutshell, it's palliative - a term coined by Canadian Balfour Mount that is an approach that improves the quality of life for people with life-threatening ailments and their families.
On the Sunshine Coast, if you're lucky, one of the two designated hospice beds will be available and you, your family and friends will be able to put your minds at rest.
Between April 1, 2012 and March 31 of this year, 81 people used the beds, and approximately seven clients could not access them - either because another dying person was using the bed or the bed was needed for respite care. While the beds are designated for hospice purposes, they are occasionally used to provide respite care to folks requiring extensive care to allow a much-needed break for the caregiver. If a bed is being used for respite care, the person cannot be removed to allow a palliative person to use the bed.
In light of the age of our population - we're a big part of the silver tsunami in B.C. - Sunshine Coast Hospice Society is rallying for more beds. The members of the board think at least two more beds are needed to service our population. But they want to hear your opinion on this important subject. To that end, the Society is hosting a community forum on Thursday, April 25, at 7 p.m. at the Botanical Gardens' Sparling Pavilion. The panel will consist of local experts including doctors and nurses concerned with end of life care.
Hospice society board members Linda Smith and Mary Anne Darney are two local women passionately advocating for more beds.
For Darney it means changing people's mindsets.
"There is a lack of [hospice] awareness. People don't know what hospice means. They think, 'you're sick, you go to the hospital, you die there,'" she said.
And while it can be that way for patients who require medical services the hospice can't provide, for most of us, hospice is a viable alternative if we're not able to stay in our own homes to the end.
And on the Coast there's a good chance that we may not be able to remain at home unless we have the economic means to hire specialized help. For although in many areas, palliative care is available 24/7, according to Darney, Coast residents have palliative nursing care available for only eight hours each day. Both she and Smith think this is ultimately costly to our medical system.
"What happens if your spouse has cancer and there's a sudden spike in pain? You call an ambulance, an expensive solution. This is easy to fix. Goal number one of the hospice society is to provide funds for 24/7 [nursing] care," Smith said.
The word hospice comes from the Latin word hospes, which referred to both guests and hosts. And while the concept has been around since the Middle Ages, the first modern hospice in Canada was championed by Mount in Montreal in 1975. He used the term palliative care because hospice in France had a negative connotation. There it was a less-than-desirable form of care foisted on the poor.
Per the local hospice website, Sunshine Coast Vancouver Coastal Health Authority (VCH), a part of the provincial health care system, owns and operates Shorncliffe Intermediate Care Facility where the hospice rooms are housed. VCH charges a per diem rate to patients who occupy the palliative care rooms. This money is paid directly from the client to the Health Authority and hospice is not involved in paying, collecting or accounting for any monies towards the daily cost of the rooms. The staff at Shorncliffe provide all patient care and meals. Vancouver Coastal Health Authority is part of the provincial health care system, which is a branch of the provincial Health Ministry.
Hospice, however, does provide almost all the furnishings and amenities for the palliative care and family rooms, including items such as TVs, books, CD players, draperies, microwave ovens, sofas and many other things that ensure a high level of comfort and convenience in the rooms.
As can be expected, these furnishings do not come cheaply. The society relies on donations from the public and each year has a Hike for Hospice. This year it's on May 5. For more details, go to the website www.coasthospice.com, and while you're there, make a donation to this essential service that many of us will use.
Few of us want to die, but when the choice is no longer ours, it's good to know that, unlike Dylan Thomas, we can "go gently into that good night."
