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What now for end-of-life care?

Dying, death and bereavement are universal certainties.”

This is the blunt opening line of the 2014 Oireachtas Joint Committee on Health and Children Report on End of Life and Palliative Care in Ireland.

But while these facts are undoubtedly universal, there are some particular challenges in Ireland that concerns those working in palliative care services.

In April 2015, British and Irish researchers in the Journal of Pain and Symptom Management concluded that this country has the fastest-rising need for palliative care in Europe.

The 2014 Oireachtas report states that on average “29,000 people die in Ireland each year, with up to 290,000 people newly bereaved”.

“End-of-life issues will affect  every member  of  the  population  without  exception,  encompassing  both physical and mental health areas,”  writes former Deputy Jerry Buttimer in the report’s introduction.

The Irish Hospice Foundation says that between 2016 and 2021, over 145,000 people will die and over 1.4 million people will be bereaved in Ireland.

Population projections indicate that between 1996 and 2031, the population aged 65 years and over is expected to more than double. The number of people in Ireland with dementia, meanwhile, is projected to increase to 67,000 in 2021.

Currently, it is estimated that over 95 per cent of all patients availing of palliative care services in Ireland have cancer.

Legislation

Recent legislative developments will have a significant impact on the area of palliative and end-of-life care.

At the end of December 2015, the Assisted Decision-Making (Capacity) Act 2015 was enacted into law and an expert in end-of-life care tells this newspaper its introduction heralds a major change in Ireland’s health system.

“There is a new law on the books and it represents a complete shift in Irish healthcare,” Prof D William Molloy, Head of the Centre of Gerontology and Rehabilitation in University College Cork (UCC), tells the Medical Independent (MI).

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Prof D William Molloy, UCC

Prof Molloy is an expert in advance care directives and living wills and is working on a new edition of his book Let Me Decide (see panel overleaf).

Prof Molloy says that up until now, if a person in Ireland became incapacitated because of dementia or other conditions, the person who made the decision about how care should proceed was the doctor.

“And under Irish law the doctor didn’t even have to discuss it with your family, [because of confidentiality],” he adds.

“But all the [medical] colleges said you should discuss it with the family to find out if the person ever said what they wanted.

“What the new law does, it allows you to nominate a proxy. It allows you to nominate another person to make healthcare decisions for you.”

The Irish Hospice Foundation believes that there should be equitable access to comprehensive care at end-of-life, including palliative care, whether this is needed at home, hospital, hospice or in community long-stay settings

Minister for Justice Frances Fitzgerald told the Dáil in January that the new Act would allow Ireland “to ratify the UN Convention on the Rights of Persons with Disabilities”.

“The Act has been specifically devised to safeguard the rights of persons with capacity difficulties, including as regards their bodily integrity,” she said.

“The legislative framework for advance healthcare directives outlined in the Act does not in any way pertain to euthanasia or assisted suicide.”

Irish Hospice Foundation CEO Ms Sharon Foley agrees on the importance of the Act.

In terms of the next government, Ms Foley says it “must take a strategic, cross-departmental approach to issues at end-of-life.”

She names the Assisted Decision-Making (Capacity) Act 2015, as well as the 2014 Oireachtas report, as being among “some of the good work began in this area in the 31st Dáil”.

“This early progress must be built upon. Key strategic priorities for the next government would be adoption and support for the new framework for palliative care — currently with HSE management.”

Ms Foley adds that the Assisted Decision-Making (Capacity) Act 2015 “must be commenced immediately and the Oireachtas should push for the speedy appointment of the new Director for Supported Decision Making, provided for under the Bill (and) this person will drive all other developments.

“The Government should lead a debate encouraging people to acknowledge the need for future planning, to support them in loss and enable them to make important decisions for themselves — to plan ahead, perhaps using the Irish Hospice Foundation’s ‘Think Ahead’ form [www.thinkahead.ie].”

She also stresses the importance of a “commitment to fund nursing for night care to 50 per cent, as sought in the new development framework for palliative care”.

This commitment to fund palliative care is crucial in the context of projections for major increases in the population of older citizens in the coming decade, Ms Foley explained.

Challenges

What does the Foundation see as the most significant challenge facing palliative care in Ireland at the moment?

“The Irish Hospice Foundation believes that there should be equitable access to comprehensive care at end-of-life, including palliative care, whether this is needed at home, hospital, hospice or in community long-stay settings,” she tells MI.

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Ms Sharon Foley, Irish Hospice Foundation CEO

Ms Foley believes that while specialist palliative care (SPC) has developed and is largely embedded in the Irish healthcare system, the biggest challenge is to “protect the SPC budget [less than one per cent of the current healthcare budget] and to ensure equity of access to SPC for both adults and children across the country”.

“[There are] significant geographic and other inequities that remain in the provision of services, with two areas — the midlands and the north east counties having no specialist inpatient unit [level 3] and with no progress in over 15 years in providing this vital hub. 

“This means that patients in these areas have no regional access to day care and outpatient clinics and there is no regional education and training centre. Many SPC services do not have complete multidisciplinary teams.”

In the area of children’s palliative care, she says there “is a need for a second consultant paediatrician with a special interest in palliative care and additional outreach nurses to cover areas insufficiently served by the service. 

“There is also a need to secure sustainable funding to meet the growing demand for the night-nursing service currently provided by the Irish Hospice Foundation and the Irish Cancer Society.”

Awareness

Raising general awareness among health professionals and the public about palliative care is one of the most “significant challenges”, according to the All-Ireland Institute of Hospice and Palliative Care (AIIHPC).

“Research has clearly established that the early integration of palliative care leads to better care outcomes and improved quality of life for people with life-limiting conditions,” head of the AIIHPC Ms Karen Charnley tells MI.

“Palliative care should not be seen as just being about the end of life.  One of the key priority areas for AIIHPC is raising awareness of palliative care through a range of activities, including the Palliative Care Awareness Week and the Palliative Hub.”

So is there any one area that the AIIHPC would like a new government to focus on in this area?

“AIIHPC would welcome the further development of palliative care services across the country to ensure that all people with life-limiting conditions have equitable access to palliative care provided in a range of settings, including their homes, hospitals and hospices,” Ms Charnley tells MI.

For the Alzheimer Society of Ireland, the task facing any new government is significant and it believes Irish health services are not currently prepared for the ageing population trend.

“Our ageing population means that if current trends continue, the number of people living with dementia will increase exponentially in the coming years,” a Society spokesperson tells MI.

“It’s difficult to identify just one challenge.”

The Society says it wants to see the “full implementation of the Irish National Dementia Strategy”.

“Within the Strategy, the focus in relation to palliative care includes regular assessment of palliative care need, appropriate staff training, referral to specialist palliative care services — people with dementia should be cared for in the place of their choice.”

Gauging how doctors feel about palliative care

So with an ageing population and changing legislation, how competent do doctors across the Irish health service feel when providing palliative care?

A study currently being undertaken by the RCPI in this very area should produce results later this year, MI has been told.

The study aims to understand whether doctors feel they have the competencies outlined in the national Palliative Care Competence Framework for Ireland, which was launched in 2014.

The Framework outlines the skills and knowledge all health professionals involved in the delivery of palliative care should have, whether or not they are a specialist in palliative care.

“The study is ongoing, however, we are hopeful that the results should be available later in 2016,” said Dr Lucia Prihodova, Manager of the Research Department in the RCPI.

“The findings of the study will help us identify the training and education needs of doctors involved in the provision of palliative care, and will inform the development of our education and training programmes.”

Book-smart: Breathing life into a living will

Two adult children stand at the hospital bed of their father, who has suffered with severe dementia for some time and who has now contracted pneumonia.

Questions over treatment arise, and the children disagree, unsure as to what their father would have wanted.

“These types of decisions can destroy families,” Prof Molloy tells MI. “The decisions around a parent’s death can be really destructive.”

Prof Molloy believes his book Let Me Decide, which is advertised as the ‘world’s most widely-used living will’,  “helps the parents themselves to get what they want and it also protects children and avoids potential arguments”.

In recent years, much of the political and media focus regarding end-of-life care has centred on the growing need for palliative care and also on more contentious subjects, like euthanasia and assisted suicide.

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However, the area of living wills and advance care directives has witnessed legislative developments both nationally and internationally.

Prof  Molloy returned to Ireland five years ago following a successful medical career in Canada. He has an extensive publication history in the area of dementia and his current research interests include advance directives, clinical trials in dementia and efficient use of acute hospital services for older people.

When in Canada, he began work on a book that eventually became Let Me Decide. The book is an easy-to-follow advance care directive written in plain language. It features clear explanations of treatment options and a completed sample directive. Now, well over 20 editions later, Prof Molloy is currently working on an international edition and the directive is being used in pilot projects in some nursing homes in Ireland.

“People have this terrible fear of being kept alive if they have dementia,” Prof Molloy tells MI.

“That’s where this whole movement for euthanasia is coming from, because people are losing control. But this [Let Me Decide] allows you to keep control and it’s not illegal.

“It doesn’t support physician-assisted suicide, it doesn’t support euthanasia; it is completely legal. All the major churches allow this, this is a completely mainstream, great solution to our problems.”

So where did the idea for Let Me Decide come from?

“I worked in a memory clinic. A lot of the people I saw had early memory loss and over time, they would progress and then would get to the point where they couldn’t make decisions,” says Prof Molloy.

“I remember times when the doctors wanted to send someone to intensive care, but the families were saying, ‘look, he hasn’t recognised us for a year or two; he is severely demented, we don’t think it’s appropriate’. So I developed a tool that people could fill out before they got sick to say what they wanted in the event of [what happens] later.”

And this document has become a huge success, published and sold in places like Canada, Australia, the US, Britain, Japan, Sweden, and there is also a recent Irish edition.

“I developed this and the thing just took off and basically took over my life. I have been working with it ever since.

Let Me Decide is basically what you would call a living will,” he says, “or an advanced care directive. A living will is a document where you give other people instructions to tell others what you want if the time ever comes.

“So, for example, you could say, ‘if I ever enter a vegetative state where there was no recovery or if I was severely demented and could not recognise family, if my heart stopped, I wouldn’t want CPR or I wouldn’t want antibiotics for pneumonia and I wouldn’t want to be tube-fed’.

“‘However, right now I would want everything done, I would want intensive care, I would want CPR’. The document is [thus] called Let Me Decide. It is written in very clear medical terms, it is written for healthcare professionals in healthcare professionals’ language; all the terms are clearly defined. But it is actually written for the general public as well.

“So it allows people to make choices for right now for what you want, so you can define what you consider to be unacceptable. It’s called a ‘personal statement’.”

So what has made it so popular?

“Well, first of all it works. People like it. It allows you to keep control and make decisions about a part of your life that you would normally have lost control of. To that extent, it extends your authority.”

Prof Molloy also believes it is a huge advantage for families.

“It also takes your kids off the hook. If you have two kids and one says they want everything done, and the other says ‘no’, it is insoluble. It can divide families. These are very difficult decisions for children, potentially guilt-laden.

“But it is not only patients and families — doctors like the clarity that a living will like Let Me Decide brings,” asserts Prof Molloy. “They can also be very divisive decisions among healthcare professionals, because we have surveyed healthcare professionals,” he adds, pointing out that research among doctors has been conducted in about 20 countries.

“For example, here is a man who has dementia and is coming into hospital; he is bleeding and he is going to die,” he says.

“Will you, (a) keep him comfortable and give him palliative care; (b) transfuse him; (c) transfuse him and do surgery; or (d), transfuse, surgery and do intensive care?

“What you find is that some healthcare professionals will do intensive care, some will do surgery, some will do transfusion and some will do palliative care.

“So what you have is two people standing at the end of the bed, one saying, ‘I think we should give palliative care’, the other saying ‘we should resuscitate’. There is no right answer.

“So what Let Me Decide does is extend your own autonomy. Gets the family off the hook and health care professionals off the hook.”

Since Prof Molloy returned to Ireland the reach of Let Me Decide has been slowly growing on the island. There was a pilot study in three nursing homes in Munster and a further pilot is now taking place in six more.

The pilot study with three nursing homes has “worked out really well”, he says.

“The patients loved it, the staff loved it and the doctors loved it.

“It reduced hospitalisation and it also reduced death; we reduced the number of people going to hospitals by about 60 per cent from the nursing home. Everyone says if they get sick, they don’t want to go into hospital. If you don’t have the directive, people sort of panic a bit and send them to hospital. But the trouble is, sending them to hospital increases mortality.

“Research shows that the quality [experience] of dying in nursing homes is as good if not better as dying in a hospital or in an emergency department. What we do is put palliative care training into the nursing homes.”

For more information see www.letmedecide.ie/index.php/home.

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