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Hospice volunteers want answers; transparency

UPDATE: comments from LHIN AND CCAC (below)

Hospice Prince Edward volunteers are publicly expressing disappointment in the organization’s refusal to communicate following the resignation of executive director Nancy Parks.

“We were deeply disappointed by the board’s inability to meet with us,” wrote the four volunteers in an ‘open letter to the board’ sent to local media. The four were appointed at a meeting this week to represent Hospice’s nearly 80 volunteers.

Parks, on May 30, wrote to staff and volunteers informing them she had resigned her post after six years. Her last day June 5 was followed by two weeks authorized leave.

She noted she was leaving “with very conflicting emotions and a heavy heart, but I am no longer able or willing to agree with, or to fulfill the directions taken by the board of directors.”

The volunteers, while concerned, noted in their open letter that they “are on duty as normal, committed to providing respite for caregivers in their homes and bringing comfort to residents and their families in the hospice residence.”

The letter states rumours regarding changes to services are rife in the community.

“This is one of the issues we wished to discuss with you. Your refusal to meet with your volunteer representatives and your general lack of communication indicates that you have little or no respect for those who advocate for people in our community who are in need of Hospice care.”

The letter goes on to ask what new policies are being proposed and how would they affect the volunteers’ duties. It asks for greater transparency and how the board will improve its communications. It also requests annual reports for 2014, including a financial report, as there was no annual general meeting, as usual in the fall, to present the business of the board.

The volunteers are also asking about procedures for selecting new board members and for hiring a new executive director.

At least three board members have resigned  – plus Angela Jodoin, who resigned to take over as  acting executive director and manager of the Hospice residence. She is listed as “administrator” on the hospice website.

Attempts to receive comments from Jodoin and Hospice president Linda Middleton have been unsuccessful.

On Monday, Middleton emailed a letter to staff and volunteers noting previous correspondence sent out from the board did not reach them, causing “confusion and frustration”.  The message, on hospice letterhead, was sent from her business email and she noted she would be hand-delivering to those who didn’t use internet.

She shared the board’s most recent announcement indicating hospice receives funding from the LHIN (Local Health Integration Network), administered through the CCAC (Community Care Access Centre).

“Over the past number of months, there have been ongoing discussions between HPEF, the LHIN and CCAC and the LHIN instructed HPEF in April that in order to continue to receive our funding, we were required to adhere to their conditions and abide by the MOU (Memorandum of Understanding) with CCAC. (which provides case management contracted services, professional services, medical supplies and equipment.)

“Designated members of the board worked diligently with CCAC to implement a pathway forward that would ensure exemplary palliative care service for the residents of Prince Edward County and their families.

“While there was some discussion and some concerns raised about the path forward… the board made the decision to move forward as required so that we could provide care for future residents.

Shortly after round table discussions began, Parks submitted her resignation.

“As an organization, we are grateful to Nancy for her leadership and we now need to move forward under Angela Jodoin’s interim leadership and continue this excellent work that Nancy and HPEF have already accomplished.”

Since 1998, Hospice Prince Edward offers clients and families facing life limiting and end-of-life some comfort and support through a home-visiting program.

The original organization, called Cope, was formed in 1989 by Mark Davis with a group of interested individuals, and incorporated in March 1990. Dr. Graham Burke formed the Prince Edward Palliative Care Association in 1996.  In September of 2000, Cope and the Prince Edward County Palliative Care Association amalgamated to become Hospice Prince Edward.

Paul Huras, CEO of the South East LHIN, confirmed the LHIN is not taking over Hospice Prince Edward – one of the rumours circulating.

He explained the South East LHIN does not have a direct contractual relationship and does not flow any funding directly to the organization.  For the residential hospice, the funding is flowed to the South East CCAC for nursing and PSW services.

“It is important to clarify that the Hospice Prince Edward does not receive any direct funding from the LHIN,” said Huras. “We provided $190,000 to the CCAC (for nursing and PSW services); this amount was pro-rated funding for the first year. It has since annualized.”

Huras added the South East LHIN provides funding to Prince Edward County Community Seniors Association to work in conjunction with Hospice Prince Edward to provide hospice visiting services in the community.

“Although there is no formal contractual relationship with Hospice Prince Edward, they are present at the South East Community Hospice Services Collaborative (Planning Table), are considered a health system partner, and the South East LHIN strives to collaborate with them and other partners in relation to Hospice Palliative Care across the region.”

Huras added the LHIN developed the parameters for residential hospices in the South East and has a monitoring and quality improvement role.

Gary Buffett, Communications Manager with the South East Community Care Access Centre confirmed there have been nine patients at Hospice this year. He noted that although CCAC was not admitting patients to the hospice during the strike by ONA employees, “no referrals were made so the strike did not have any impact on admissions”.

In response to rumour, volunteers, he confirmed, will not be providing care tasked to personal support workers or nurses. Buffett stated there have been no issues with volunteers “other than they may have previously been underutilized in providing support to patients and their families.”

In response to asking what changes are involved with the “critical path forward”, Buffett said:

“Hospice Prince Edward and the CCAC have met.  We agreed to these principles:
•    that a strong and collaborative approach will guide our way forward;
•    to incorporate the role of the hospice volunteer to ensure the maximum amount of support for patients and families;
•    to having joint visits with patients and their families during the application and assessment process where both hospice and CCAC representatives will explain what to expect at the hospice, what services will be available and from whom and answer any questions together as a united team.”

 

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  1. Bill Roberts says:

    Our PEC hospice is a vital component of The County’s overall healthcare offerings.
    In my view, it is a wonderful, compassionate and valued community asset.
    And our hospice should therefore benefit from patient-focused, public oversight… along with governance transparency and community accountability.
    Hopefully the now much reduced hospice Board sees it that way too.
    Bill Roberts
    Councillor, PEC – Sophiasburgh (Ward 10).

  2. JKB says:

    Without 24hr care there will be times when there will be no employee from CCAC or Hospice in the home….how could this be better than the patient being in their own home where they still get the comfort of familiar surroundings and still have home visits form CCAC….I realize there are times when a patient may have no family in the area and this may be a time for Hospice, but why when the majority of the family live right here in the county.

    With so many different offices that people have to reach before being admitted to hospice is this not all explained.

    I can’t imagine many voluteers being comfortable being left in Hospice by themselves with a patient and no nursing care on duty.

    At least in the hospital the voluteer or family have access to immediate qualified health care to help when the patient’s time has come to leave this earth…Hospice, I thought was to enable the patient to die with dignity, not spend their last days in an unfamiliar surroundings and having no one that can change soiled underwear or bed until the next PSW or nurse comes on duty….Lets not forget the support staff does not always live in the county or if they do it still could take them 30 45 minutes to arrive at Hospice…Were is the dignity in this?

    Another blunder by our wonderful government, in building a system with so many levels for one need, Care when Dealing with Death

  3. Marnie says:

    I have had several family members die in hospital Brenda and members of my family were able to experience much of what you describe at Hospice. The professional care was there and there was Mary Catherine Scott room which we used plus a spacious sun room. There was even a pleasant garden area on the front lawn of the hospital where we spent some time. Hospice does good work but so does our hospital. I do not see a huge difference in the level of service.

  4. Brenda says:

    Marnie, you need to spend time at hospice to realize the value it gives no matter how long the length of stay is for the patient. The majority of these people have been ill and cared for at home by family members, usually the spouse for quite some time. The help given at home is never enough. You need to see a wife/husband be able to take a deep breath and relax when they see their loved one is being cared for by trained professionals. They can go back to being a supportive, loving spouse rather than main caregiver. You need to see a large family have the space they need to come together and support each other. And if this is only for a day or two, or, yes, sometimes a few hours, there is huge value in that. With the mandate from the SELIHN and CCAC, and thus the HPE board, now insisting volunteers play a larger role in that support and ultimately caregiving, maybe you would like to help. The amazing volunteers at hospice will tell you there is great value to everyone involved.

  5. Marnie says:

    A Hospice would make sense for a patient with a terminal illness who could require weeks of care not easily provided in the home, but what is its value for those who have only hours, days, or no more than three weeks to live? These people are far too ill to appreciate some of the amenities such as the new deck or the professionally landscaped grounds. It seems Hospice is more for family and friends than the patient.

  6. JKB says:

    My understanding is that CCAC has said that there will be no 24hr care for residents in the home…There will be times when no Hospice staff will be in the home while patients are there, possibly a volunteer may be there…I am afraid what this looks like is that people are using the hospice as a hotel, where they can sleep, shower and eat and be with their loved one in their final moments together. I cannot understand why anyone would want their loved one in a new surrounding without medical care…why not keep them at their home….Nursing homes do not send their patients to Hospice, but let them die in peace in familiar surroundings or trf them to a hospital where full time medical care is provided.

  7. Jill Robinson says:

    Way to go Hospice Prince Edward volunteers! I think the Board Chair, Linda Middleton has forgotten the role of this organization as community funded and locally driven, having taken on lofty airs as a part of a government arm. What’s the mandate for goverment healthcare? Bottom line at all costs.
    Hospice Prince Edward has always been a grass-roots, community driven and supported organization. Have the disillusioned board members forgotten that the Residential Home was bought and paid for by the hard earned and generously donated money of the people of Prince Edward County?!
    Board of Hospice Prince Edward, be on notice that you are accountable to this community and most of all to the volunteers who make it all happen!

  8. kawartha dave says:

    Unfortunately anything connected to LHIN is just a political football and a power/money grab. Individual services in all areas serviced by the LHIN will continue suffer. Hospitals, Hospice, Community Care are all at risk. Who started the LHIN in Ontario?? Why, it was our provincial government who found another way to reward their friends with our money.

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