Lingering questions

Susan Wallis and her mother, Bernadette Baran, at Sandbanks beach on a warm Thanksgiving weekend in 2011.

Families remain in the dark about turmoil at Hospice

Even as the storm clouds that have swirled over Hospice Prince Edward these past few weeks begin to clear, there remain many unanswered questions about what led to the sudden departure of its executive director. Since then, the chair, interim executive director and several board members have also quit. Volunteers, donors and the community have been frustrated in their attempts to learn the cause of the turmoil and what it means for the care of their loved ones.

Susan Wallis’s mom, Bernadette Baran, died peacefully at Hospice Prince Edward on June 2. Unbeknownst to Bernadette and her family, the administration and governance of the facility was falling apart. None of it, Susan is quick to add, was reflected in the care and comfort Bernadette and her family received over those difficult days.

“Everyone was wonderful,” insists Susan. “It was a wonderful experience, as good as it could have been under the circumstances when one is losing a parent.”

Yet questions linger. Susan attended the public meeting at the Community Centre in Picton, but left feeling she was no closer to an answer.

WITHOUT WARNING
Bernadette Baran was an active, independent 85-year-old. Her husband had passed 22 years earlier. She was relatively healthy for her age.

But this past April, she received a sudden and devastating blow. Doctors advised her that an aggressive cancer had taken hold. There was nothing they could do. Bernadette had just months to live. It didn’t seem real.

Her family gathered round. Susan offered her home in Cherry Valley, while the family worked on a care plan for Bernadette. After a few days, Bernadette decided she would like to stay. She loved the place Susan and Glen had created on East Lake. But her condition deteriorated quickly—much quicker than even her doctors had predicted.

“If you left her even for short period, you could see that her condition had worsened,” recalls Susan.

Eventually, due to complications Bernadette was admitted to Picton hospital, where she received excellent care according to Wallis. Sadly it was becoming clearer that Bernadette needed more care than could be provided at home. Susan began to look at long-term care facilities, but the speed of the cancer soon made that search irrelevant.

Susan had been an active fundraiser, and had contributed to Hospice Prince Edward. She encouraged others to do so. She felt fortunate that this facility was in her community and was a potential option for her mom.

She was taken aback, however, when hospital staff discouraged her from hospice care. A doctor on rounds at the hospital said it wasn’t a good idea, warning Susan her mother might not get the 24-hour care she needed in her last few days.

Confused, Susan turned to Nancy Parks, then executive director of Hospice Prince Edward.

Parks told her not to worry—giving Susan her personal assurance that Bernadette would get the care she needed.

Wallis left feeling better, but sensing she would have to fight with healthcare bureaucracy to get her mother into Hospice. As far as Susan understood, since March, Hospice had not admitted a single person into their care.

Susan organized a meeting, bringing the hospital’s outpatient coordinator and Community Care Access Centre case worker, along with a member from her mother’s palliative care team to the table. She was bracing for a confrontation.

But it never came.

“Everyone was wonderful and cooperative,” says Wallis. “They were all wonderful people. My mother was given the 24-hour nursing care that was needed, and the emotional support my family so desperately needed.”

Yet leading up to this meeting there was this persistent discussion of hours—how best to use the nursing care time allotted to her mother and how family members, untrained in palliative care, would have to take on the extra hours not covered. It was confusing and a bit vulgar to be asked how to apportion the care for her dying mother.

“I didn’t know how to answer those questions,” says Susan. “It seemed unreasonable”

The discussion of hours added to the anxiety of those difficult days—but she says these calculations weren’t reflected in the exceptional care her mother and family received by everyone involved.

She learned the day after her mom passed that Parks had parted ways with Hospice—igniting the firestorms that has dogged the facility since. She wants to know why no one had received care at Hospice for months before her mother arrived in late May. She wants to know why she was discouraged from receiving care at Hospice and why she had to fight, at such a difficult time, to get her mother into an empty Hospice home. She wants to know, too, why in the eyes of the healthcare bureaucracy, her mom had been reduced to a number of hours to be traded like playing cards between competing agencies.

She is still waiting for answers.

Stephanie MacLaren has stepped in as interim executive director, while Birgit Langwisch works to reassemble the board of directors. MacLaren also heads the County’s Family Health Team.

She says she can’t account for reasons why no patients were admitted to Hospice from March until May.

“I can say that the Residential Hospice has been occupied during my short two-week tenure and was, for a few days at full capacity,” says MacLaren. Hospice is actively working with the CCAC, Bayshore Home Health and the physicians of the Prince Edward Family Health Team to ensure that the highest quality and levels of care are being offered and delivered to our community.”

MacLaren says the breakdown in communication is regrettable, but it is being addressed.

“In collaboration with all partners providing care at HPE, we will be working on a communication strategy to ensure that all service providers across the continuum of care are aware of the services provided at HPE, and, of course, working with those very same providers to improve the system,” says MacLaren.