In Part 1 of this two-part series on Prince George Hospice Society, the financing of the palliative care program was examined. The local facility is underfunded, said staff and clients, especially considering that the demand for expert end-of-life healthcare is growing as the baby boom bubble rises to elder status and society comes to increasingly better terms with the concept of dying.
Almost all guests who take a bed at the Prince George Hospice House one day get a candle lit for them in the main hall.
The candle marks the passing for those in that unique community, a group that spends each day guiding guests as comfortably and proudly as possible towards the light.
Today's palliative care guests and their loved ones expect more from a modern hospice house than a comfortable bed, basic hygiene and soft music.
They bill themselves as a team of nurses, care aids and volunteers who have a higher standard of training to focus on the specialties of those in the final days of life. Many guests suffer from the infirmities of advanced age, some have terminal illnesses, some have surrounding families and others are alone.
"When someone is admitted to hospice care, their general practitioner (GP) follows their care and we ask their GP to follow our protocols in relation to the patient's needs," said Prince George Hospice Society's executive director Donalda Carson. "There is a dialogue about the kinds of drugs and amounts of drugs being administered."
There is a particular duty-doctor who gets called upon by hospice house staff if need be, but, said Carson, "we would like to have a dedicated staff doctor or a medical director, but it is not something we can do on our current budget."
Each new staff member gets a three-shift orientation accompanied by an experienced peer.
Each full-time nurse does get a five-day course on palliative nursing, available only in Victoria where hospice care in B.C. was born in 1980 (Prince George, the first stand-alone hospice facility in B.C., opened in 1995). However, local nurses may have to be scheduled for the course long after they have already been hired and on the job, part-time nurses don't get the course, an no other conferences or courses are provided, all due to funding constraints.
"We are unlike any other health-care facility," Carson said. "We aren't about set bedtimes and visiting hours and meal times the way other places are. Our guests are in charge of their lives. In most hospitals or care facilities, nurses are in charge of your care, but here nurses are accountable for care and the guests are the boss. It is a big adjustment for nurses or care aids who come from other institutions."
There is one other massive difference in the hospice model, Carson said, and it flickers on a table in the lounge at the side of the open, stately dining area - that single candle with a first name written on a card beside it. It is the signal that someone, the one named, has died. It is the first place incoming staff and volunteers check when they start their shift.
"We aren't trying to achieve something we can't. We know they are going to die," Carson said. "That candle is for us, the caregivers. We are unrecognized grievers. I found that candle very helpful for me. It helps us to reflect, to not be machines.
"We have had four deaths in a day, sometimes, and four new admissions the next day," she added. "I can't tell you, as we stand here, what effects that has on us, as staff and volunteers. As human beings I know we have to process that and let it go, somehow, to maintain mental health."
HOSPICE PRINCE GEORGE'S MEDICAL CHART
- Ten beds available.
- Each room is 300-plus square feet, electric elevation beds, outfitted for three more overnighters (recliner chair and futon), wireless call system, independently controlled air conditioning and heating, independent bathroom, lift system for movement to bathroom/common areas, television, etc.
- General facility has several lounges, a child's play area, kitchen and dining area, spiritual room, showers for family, staff and volunteer room, even a ventilated smoking room.
- Overall employment pool 'on the floor': three full-time registered nurses (RN); five part-time registered nurses; three full-time care-aids; three to four part-time care-aids (plus some casuals), zero staff doctors or medical directors.
- A typical shift: one RN, two care-aids, various casuals, volunteers.
- In 2010, 266 volunteers completed 6,185 hours of work.
- What volunteers do: work in the offsite resale shop, fundraising tasks, grief support, baking and comfort food preparation, and much more.
HEALING INSIDE THE BROKEN CIRCLE
When Denise Torgerson-Trick told a friend she was looking to spend some of her free time volunteering for a community cause, the friend put the question directly to her: if you could only volunteer for one thing, what would it be?
Torgerson-Trick's immediate answer was "hospice", so that is who she called. That was more than 10 years ago, and she is still active, but always at a supported pace.
Hospice society volunteers can do almost anything within the field of palliative care, short of the medical duties for which professional credentials are needed. Some bake, some clean, some administrate, some are soft hands to hold and willing ears to listen.
Some run support programs. One, the Rainbows Program, helps children (Christian-based and secular-based versions available) through the emotions of grief and loss.
Another trained group of volunteers fans out to homes across the community to give respite to caregivers for those helping a loved one through home-based palliative care.
Another program offers one-on-one support through the grieving process for anyone who has lost someone close to them, be it a friend, co-worker, or relative.
Another similar program, Broken Circle, is for spouses and close family members. That is where Torgerson-Trick focuses her energies. She is one of the facilitators.
"I am in awe of the people I deal with all the time - the courage in facing some of the things they have to face," she said. "They don't need help so much as a place where they can express their grief, and I am honoured I can be a part of that."
Broken Circle is a 10-week program that doesn't typically admit someone until at least four months have gone by from the time of the death, to allow daily routines to settle back in on the survivor and the emotions of the loss start to stand out.
"One of the uncomfortable parts of grief is watching someone cry. That doesn't make me uncomfortable at all," said Torgerson-Trick. "It is so important to cry, so when I see it happening I just thank the gods that someone is getting what they need."
Torgerson-Trick was trained to handle Broken Circle course material, and there are others who back her up and give her time off to prevent burnout.
She said most people, when they come through the door for the first session, have voices in their heads telling themselves that they aren't grieving correctly. Society has ways of telling us to suck it up, to get on with things, "but that is hardly ever realistic," and the program puts the truths of grief into the participant's hands.
"At the end of the 10 weeks they are not finished, but they are provided with some ideas or foundations to carry on through their grief as it is for them," Torgerson-Trick said. "You can't fix grief, you go through grief. It's the same with terminal illness. There is no fixing, there is just allowing."
SELF-DIRECTED DYING in B.C.
The provincial government has been following the lead of the Provincial Framework for End-of-Life Care implemented in 2006.
According to Ministry of Health Services spokesman Ryan Jabs, there is a marked increase in the number of British Columbians seeking out a dedicated palliative care program for their final days of life, and many wish to have that service right in their own home.
Those people are demanding access - whether at home or in a hospice facility - to a range of services including case management, home nursing care, community rehabilitation, home support, respite care and hospice palliative specialties.
"In order to give patients more choice, we've built up our palliative care supports and in 2010, about 53 per cent of people who died of natural causes in B.C. spent their final days at home, residential institutions or hospice compared to about 44 per cent in 2003," said Jabs. "We recognize that as part of care at home, B.C. residents who choose to die at home may receive the same drug coverage they would receive if they were in hospital. More than 50,000 clients have received these benefits since the program started in 2001."
He said that $14.9 million was spent on medications and pharmacy dispensing fees in 2009/10 - up from $3.9 million in 2001/02.
There were 57 dedicated hospice beds receiving government funding in 2001, and now that number stands at 318 across the province.
New legislation comes into force on Sept. 1 deepening the definitions of the rules for advance directives, which will give patients more control over the care they receive.
Also on the provincial horizon is a four-year palliative care study commissioned by the BC Nursing Research Initiative conducted by the University of Victoria in partnership with Fraser Health. It is most of the way through its first year and will, upon completion, help inform future initiatives in B.C.
