THE OIREACHTAS HEALTH Committee has said that people who require end-of-life care should automatically receive medical cards.
In addition, the committee has suggested that these cards should not be subject to a renewal process.
Alternatively, it proposes extending the renewal period for discretionary medical cards for those requiring end-of-life care to 12 months.
Those are two of the 37 recommendations in the committee’s ‘End of Life and Palliative Care in Ireland’ report, which was launched at Leinster House today.
The document, which was drawn up after a public consultation process with submissions from several relevant groups, also stressed the need for a national strategy on end-of-life care and death.
It noted that all hospitals should draw up their own strategies for dealing with these issues.
The report acknowledges that there are “many competing demands placed on our health budget” and suggests that the specialist palliative care budget be ring-fenced for a minimum of five years to “prevent an undermining of the services currently available and to protect future investment in the sector”.
Bríd Carroll of the Irish Childhood Bereavement Network said that a national strategy on bereavement is “groundbreaking because we don’t have that in any of the European countries or in the US”.
“The committee has taken on so much on board in terms of the submission that were made to them, it’s about joined-up thinking. The implementation is vital at this stage,” Carroll said.
In terms of medical cards for children, the report states that children who require palliative or end-of-life care should also automatically receive medical cards, without being subject to a renewal process.
It adds: “Alternatively, any renewal could be on the basis of a covering letter from a child’s G.P. or consultant, rather than by a means assessment.
“The Department of Health, in consultation with the Registrar of Births, Deaths and Marriages, and any other interested party, could consider an alternative procedure for the issuing of medical cards to infants who have not been issued with a Personal Public Service Number (PPS Number).”
Caroline Thomas, a liaison nurse with the Jack & Jill Foundation, said that this would make a huge difference for parents as it can take weeks to get a PPS number – a period when families should be enjoying what time they have left with their child.
Sinéad Moran, also a liaison nurse with Jack & Jill, said that the automatic provision of medical cards to children in need of palliative is a vital step.
For them to follow through on that is very important for families. To know when they take their child home that card is given to them and whatever services they need – end-of-life care, palliative care, equipment – they can automatically be sanctioned it without worrying about the financial side of it.
In the report, the committee recommends that State funding should be provided to Jack & Jill to enable the expansion of its end-of-life care service to support children up to the age of 6. It currently supports 0-4 year olds.
The report also suggests providing State funding to the LauraLynn Children’s Hospice.
Carmel Doyle, Jack & Jill’s Communications Director, said that donations to the charity in 2013 were down by about 20% on the previous year.
To see that in black and white they’re saying to increase the funding to Jack & Jill – it’s about time and hear hear and fair play to the committee. We hope now that they’ll back these words up with the money that’s needed to enact this.
When launching the report, committee chair Jerry Buttimer said that he “couldn’t but be impressed” by those who made submissions during the consultation process, which began last October.
Buttimer noted: “Death and dying is something that all of us will encounter,” and stressed the importance of a “holistic approach” to it.
“A significant amount of our health budget is expended caring for our citizens who are dying or facing death and bereavement. Some evidence suggests that this –largely unplanned – expenditure may be as high as €1.3 billion each year.
“It is appropriate, therefore, that we examine how we can best provide a quality service for people who are dying, and those who care for them, while making best use of our finite resources.
Committee member Ciara Conway added:
We should be comfortable to talk about what we want [when we die] … We never know when that day will come.
The committee has also called on the Government to address the regional disparities that exist in the provision and funding of specialist palliative care services and make the opening of the hospice beds in St Francis’ Hospice, Blanchardstown; Marymount Hospice, Cork and Milford Care Centre, Limerick a priority.
At any given time, there are over 600 people in hospital beds in Ireland, waiting for nursing home beds – this costs the State €196 million every year.
In terms of funerals, the report suggests that quality standards should be developed for the funeral services industry in Ireland, adding that “some oversight mechanism should be developed to support these standards and ensure they are met and exceeded”.
When summing up the committee’s work on the report, Buttimer stated:
We recognise that dying, death and bereavement cannot be neatly-packaged and handed over to the palliative care services or the health service generally as their exclusive remit and responsibility. As dying, death and bereavement affect us all without exception, so too are they the responsibility of us all, as individuals and as citizens.
He added that a national strategy on the subject “should form part of an overarching, interdepartmental end-of-life and bereavement framework encompassing wider societal, legal, financial, educational, administrative and cultural aspects”.
“This could help us to weave all of these separate threads of good practice and support into the tapestry of our common humanity for the benefit of all.”
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