Mary Hughes, former nurse manager at Prince Edward Home, has long been waiting for the palliative care unit to move out what she considers to be a "dilapidated'' building and into a new stand alone unit.
The Prince Edward Home in Charlottetown is much like a weathered, beaten body waiting to be peacefully put to rest.
Soon, residents of the nursing home/manor will be moving out of the long-term care facility and into a bright, spanking new location.
The PE Home, though, will still house short-term residents, those with little time left to live.
Mary Hughes, a registered nurse intimately tied to the facility and to palliative care, shudders at the thought of people spending the final weeks and days of their life in an 80-year-old building that truly shows its age. She describes the structure as shabby, dilapidated and decrepit.
The former nurse manager of Prince Edward Home recalls as far back as 2000 dodging large garbage cans that were used to catch rain leaking into the building.
“So the place is old,’’ she says. “It’s served its purpose.’’
Yet the building will continue to remain on life support into the near future, at least in order to house the palliative care unit, as it has since 1992, until a promised new stand-alone unit is built.
That day cannot come soon enough for Hughes. She is surprised and frustrated that day has not already arrived.
“I actually thought it would be up and we would be in there now,’’ she says.
“The talks have been going on for some time. It didn’t just start with this (Prince Edward Home) building moving. It started years before knowing that we are a separate area of health care.’’
Health Minister Doug Currie has assured Hughes that a decision would be coming “shortly’’ on a provincial stand alone palliative care unit.
Currie was willing this week to give The Guardian a somewhat more definitive timeframe. He anticipates, at the very latest, construction starting on the stand-alone unit in early fall with the facility opening in the late summer of 2014. He estimates close to $5 million will be spent on building the unit.
“We are committed,’’ he says. “I have been frustrated as a minister with the length of time that it has taken. I just thought that we would have been a little further along.’’
The heath minister promises to ensure that the old Prince Edward Home building remains “appropriate and safe’’ to carry on as home to the palliative care unit until the new building is ready.
Still, Hughes has concerns over safety with so many doors and ground floor windows providing “umpteen ways’’ to enter the building by people desperate enough to do so to get their hands on the very strong narcotics used on the palliative care patients.
“One of the things that we pride ourselves in here on the unit is that families can come at any time of the day,’’ she says. “Because we know a lot of these people now in their desperation for drugs carry weapons, a staff person could be gravely injured. The commissionaire could be injured.’’
Currie says he has directed his department to address issues around security.
Not only does Hughes and others have to wait longer than expected to see the provincial stand alone palliative care unit go up, the facility will not be the “Cadillac model’ initially sought.
Hughes, who is currently teaching palliative care to students at Eastern College, would have liked the new facility ideally to house a 12-bed palliative care unit. She can, however, live with 10 beds, which according to Currie will be the number.
That is up from the current eight-bed palliative care unit at Prince Edward Home where a waiting list exists “99 per cent of the time.’’ Those on a waiting list often die in hospital.
Currie confirms the site of the new facility will sit between the Queen Elizabeth Hospital and the Hillsborough Hospital. Hughes considers the location, with a peaceful setting near the water and conveniently sitting next door to the hospital, a good site.
Currie says the new facility will also be able to provide all of the needs sought by the Hospice Palliative Care Association of P.E.I., including a day program that will allow a person to stay at the palliative care unit during the day and return home with family overnight.
Both the reality and perception of palliative care has undergone a considerable transformation, notes Hughes.
She says back when palliative care was first introduced in Prince Edward Island in the early 1980s and even in the past five or 10 years, palliative care was viewed simply as end of life.
“This is where they came to die,’’ she says.
Today, the focus is on managing pain and assisting in a compassionate and professional manner the dying patient and his or her loved ones on the patient’s final leg of life.
“We provide quality to your life until your last breath is taken,’’ says Hughes. “You don’t live in pain. We help you achieve the goals that you have left in life.’’
Those major loose ends in need of tidying up, she adds, may include everything from making amends with a family member to saying goodbye to children.
Hughes remains totally amazed by the ability of an extremely ill, dying person to control to some extent when they finally let go, often at the time they feel their loved ones are ready to let go.
Hughes knows first hand using well established guidelines in estimating how long a person has to live is far from an exact science, perhaps because it does not factor in the human will to hang in just a little while longer.
“I wouldn’t want to tell you in 42 years of nursing how many times I have been proven wrong,’’ she says.
Last year, 81 people died in the palliative care unit at the Prince Edward Home. Some are in for only days, others for months, before they die. Some come to the unit, then return home before coming back again one final time.
Hughes says one thing she stresses in the palliative care support worker program is that for every patient at end of stage, a staff person has that many more patients because of loved ones.
“So if I have a patient with five family members, than my staff person actually has six to look after because it is so important to support the family,’’ she says.
“We know with good support, with good education, with good information, that bereavement journey is a lot easier afterwards if they’ve had that good support.’’
