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Enhancing end-of-life care

There has been “considerable progress” made in improving end-of-life care in HSE hospitals, a new report from the Ombudsman has found.

However, the report also notes that challenges remain, particularly in the area of communication between staff and patients.

A Good Death: Progress Report was launched in Dublin last month (20 September). Speaking at the launch,  Ombudsman Mr Peter Tyndall said that there are “still some aspects of services that require attention”.

In the report’s conclusions, there is strong praise for the “growth of the Hospice-Friendly Hospitals (HFH) Programme within most acute hospitals, the increased availability of specialist palliative care services… the increase in the number of end-of-life co-ordinators and committees in hospitals”.

However, the report’s conclusion also cites continuing problems with communication, with some patients stating that sometimes, “staff did not appear to have much time to talk to them.”

The report stresses that conversations about diagnosis, prognosis, or decisions about resuscitation all need to be handled with sensitivity, in a way that patients and families can understand.

In addition to staff not having time to talk to patients, it was also reported that some doctors gave “bad news” in a blunt manner in front of patients, or that patients were told about their diagnosis without the option of family members being present to support them. According to the document, complaints made to the Ombudsman highlight the need for continuous training for hospital staff on communication, and the need for professionals to realise the importance of these conversations at the end-of-life or after a death.

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Pictured L to R at the Ombudsman progress report into end-of-life care: Prof Cillian Twomey, Chair, HSE/Hospice-Friendly Hospitals Oversight Committee; Mr Peter Tyndall, Ombudsman; Ms Sharon Foley, CEO, Irish Hospice Foundation; Mr Liam Woods, HSE National Director, Acute Operations; and Mr Tom Curran, Patient Representative, Voices4Care

The Medical Independent (MI) asked speakers at the launch whether time pressure on staff, as well as the need for more training, could be a contributing factor to communication issues.

“This is a huge subject,” responded Prof Cillian Twomey, Chair of the HSE/HFH Oversight Committee.

“I think first of all, a kind, quick word should be possible at any time. But it maybe requires a more prolonged discussion that may not be possible at that particular time, because it is in the middle of a very busy environment in an emergency department, or an acute ward, or whatever. So I think we, as doctors, have to set aside time specifically earmarked for meeting patients and their relatives.”

Time

“I tried to do that in my own practice,” added Prof Twomey, a retired consultant in geriatrics. He also emphasised the importance of undergraduate training, as well as ongoing training for doctors throughout their careers on end-of-life care matters.

“But the constraint I had working was there was no place in which I could have that discussion, other than in a corridor or in a ward. The family room concept [is positive]; it can be a multi-purpose room. It need not just be a room for end-of-life care — it can be used for all sorts of activities.

“The other thing I will say is, when you talk to someone in a healthcare setting they don’t hear half of what you say the first time you meet them and they don’t understand half of the stuff they did hear. So it needs to be a repetitive process, so it is time-consuming.

“But I would finish by saying, whether we like it or not, we as healthcare professionals must make the time to facilitate that discussion, as difficult as it can be.”

In response to MI’s question, Mr Tyndall echoed Prof Twomey’s comments.

“People are very busy and they are under huge pressure in work; we understand that,” he said. “On the other hand, a well-chosen word doesn’t need to take any more time than a badly-chosen word, even if there is very little time for it — I can appreciate some of the issues with that. It’s a mixture of both [needing time and training]. We know the pressure the health service is under and let’s be honest, it is going to stay under that kind of pressure because of demand, but for all of that, a kind word can make a huge difference at the right moment.”

Survey

Mr Liam Woods, HSE National Director, Acute Operations, also spoke to MI at the report launch.  He argued that the National Patient Experience Survey will help with the Executive’s provision of end-of-life care.

“With the patient experience survey completed by Hospital Groups, and nationally, we can bring that information back to individual units, so we are seeing better processes for people to make their views known,” Mr Woods told MI.

“Not just complaints, to be fair — we get a lot of positive acknowledgement as well. We have seen improvement in that. The survey for the second year, jointly with the Department of Health and HIQA, is underway at the minute. That set a baseline last year, so it will be very interesting for us to assess patient and public attitude based on this year’s experience.

“So we have seen change, better systems in place, and probably better response in most places. We would also acknowledge that we have a lot of learning to do; if you look at a lot of the reports coming out from the HSE, there is also space to learn.”

At the launch, Ombudsman Mr Tyndall said “our health services come under fire on a daily basis. We seldom hear about the good outcomes in our hospitals. I want to attempt to address that imbalance, and give credit where it is due.”

The report also highlights the importance of improved physical facilities for dying patients and their families. It finds that the HSE and the Irish Hospice Foundation (IHF) have worked hard to improve end-of-life facilities across many hospitals, which has made a “tremendous difference” to patients and their families.

Important area

Mr Woods said end-of-life care is a very important area for the Executive.

“Over 11,000 people die in hospital each year and our services and our staff are part of the experience of so many families at this difficult and emotional time. I am very encouraged that the Ombudsman’s second report has shown clear signs of improvement across our hospitals.

“The HSE continues to work very closely with a range of partner organisations to improve how we deal with end-of-life issues and, in particular, I would like to acknowledge the work of the Irish Hospice Foundation in this area.”

The Ombudsman’s report was jointly launched with the IHF and the HSE, which published a new information booklet for the public: When someone you care about is dying in hospital: What to expect.

Prof Twomey said “as the Ombudsman’s Good Death report continues to highlight, poor communication is a feature in almost all the complaints received. We hope this booklet will play a role in reducing the gap between the message professionals intended to give and what is understood.”

The new booklet’s publication is the direct result of one of the key findings of the 2014 A Good Death report, citing poor communication as a feature of each complaint received about end-of-life care.

A joint IHF/HSE initiative, the booklet is described as a “new communication resource to support patients and families at such an emotional and challenging time”. It offers practical advice on aspects like coping with changes in the person who is dying, talking about feelings, what to do if someone dies while you are with them, looking after yourself, etc.

The booklet is the work of the joint HSE/Hospice-Friendly Hospitals Oversight Committee. Formed in 2017, one of their key priorities is to reduce the variations in end-of-life care received across Ireland.

Advancing children’s palliative care

Catherine Reilly

There are 3,840 children living in Ireland with life-limiting conditions and more than 30,000 parents, carers, brothers, sisters, relatives and friends impacted.

Approximately 350 children with a life-limiting condition die each year, mostly within the first year of life.

Over 720 children with a life-limiting condition are in need of specialised hospice care because of their illness, according to LauraLynn Children’s Hospice in Dublin.

LauraLynn is part of a coalition of children’s palliative care service providers and consultants in specialist paediatric palliative care calling on the Government to prioritise development of the Children’s Palliative Care Programme in Budget 2019.

Their priorities for progress in Budget 2019 include: Re-establishing a National Development Committee; employment of the National Programme Manager; extension of the Clinical Nurse Co-ordinators Service for children with life-limiting illnesses; further development of clinical palliative care services in the children’s hospitals; effective integration of the Children’s Palliative Care Programme and service providers, including the funding required for community-based voluntary services; and the need for an agreed road-map for further development of priorities in children’s palliative care and secure funding.

The submission underlines a requirement for three paediatricians with a special interest in paediatric palliative medicine who work exclusively in children’s palliative care. “One whole-time equivalent (WTE) is currently in post in OLCH [Our Lady’s Children’s Hospital] Crumlin and the Irish Hospice Foundation has funded a second post in Childrens University Hospital Temple Street, with a commitment for long-term funding from the Department of Health. One further consultant will be required.”

LauraLynn is the only children’s hospice providing palliative care and support for children with life-limiting conditions and their families in Ireland. Its care can be delivered in the hospice, at hospital, in the community or in the family home, depending on the child and family’s preference and the medical needs of the child. LauraLynn currently provides care to 156 children with life-limiting conditions and support to their families. While Laura Lynn receives some statutory funding, €4.2 million must be generated this year through donations and fund-raising. 

According to Dr Joanne Balfe, Consultant Paediatrician at LauraLynn, one of the significant differences between paediatric and adult palliative care is the very wide range of conditions from which children pass away. “People often think of cancer but actually, very few children, thankfully, die from cancer each year. Children’s cancer care is becoming incredibly successful in children surviving beyond their illness so there is a very, very broad range of [life-limiting] conditions and those conditions can be very, very rare.”

With advances in areas such as neonatal medicine, there are more children with life-limiting conditions and highly complex medical needs. There are increasing numbers of children on non-invasive ventilation at home and on complex medication regimens, for example.

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Dr Joanne Balfe

“We don’t have an enormous range of medications, but we are using newer and more complex medications — parents are the care-givers, so they are administering multiple medications, complex medications, to their child multiple times a day, usually via gastrostomy or increasingly, jejunostomy,” said Dr Balfe, adding that such complexities present challenges to all concerned.

The focus on paediatric palliative care is centred on both the care of the child and the needs of the family. In addition, there are often situations where the child cannot communicate their preferences, which makes decision-making more complicated. 

“So we are working with family members to try and make best-interest decisions without the child being able to tell us what that is,” explained Dr Balfe.

Many conditions affecting children accessing the service are autosomal recessive, therefore some families will have more than one child affected.

LauraLynn’s Senior Clinical Psychologist, Dr Aidan McKiernan, said some families have been through the death of more than one child. Loss is cumulative and the grieving process does not become easier based on prior experience.

“It is not as though if you have one loss, you are going to be better able to manage another…there is a build-up; it is harder to lose more than one person who is close to you and it is certainly harder to lose more than one child.”

Paediatric palliative care can be a very rewarding career for healthcare professionals, but also challenging at times, according to Drs Balfe and McKiernan.

Dr McKiernan said there are numerous supports in place for Laura Lynn staff, as professionals in paediatric palliative care can be susceptible to burnout.

“Our nervous system is only engineered to accommodate a certain amount of grief and when you are next to that and you are being activated by it, it may be that we have a ‘quota’ — a certain amount we can absorb,” he explained. “People find different ways to work effectively in it over time, so myself and [Dr Balfe] teach as well and are really passionate about research. We are now starting to build through a memorandum of understanding with UCD — we are going to start to build a research infrastructure here, so we want to, in a very systematic and careful way, be sure why we are doing what we are doing and be clear about what it is like for families.”

One potential research area being explored is an Irish epidemiological study in respect of children with life-limiting conditions and palliative care needs, as current Irish data is extrapolated from UK figures, added Dr Balfe.

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