Webinar: End of Life Care for People with Intellectual and Developmental Disabilities

 

I recently attended a webinar on end-of-life care for people with intellectual and developmental disabilities. This marked the launch of new book on this topic. This edited volume includes a lot of useful case studies, and covers subjects such as do not resuscitate orders, accessible funerals, suicide, and many others. The book informs people about this sometimes taboo subject in a sensitive manner. I was privileged myself to contribute to one of the chapters, on living and dying well with dementia.

The keynote speaker was Dr Karen Ryan, consultant in palliative medicine. Dr Ryan spoke on the process of dying, drawing on her experience as a researcher as well as a clinician. She highlighted that a "good death" is unique for every individual. There may be common elements to a good death, such as experiencing dignity and respect, but of course concepts such as "respect" might be realised in different ways for different people. End-of-life care is a complex practice; sometimes there can be disagreement within multidisciplinary teams. Indeed, decisions can be ethically complex and distressing for those involved in making decisions, and legal uncertainties can further complicate matters. The recognition that someone is dying is clearly key, but some signs of dying may (by themselves) rather be symptoms of treatable problems. Dr Ryan noted that uncertainty is inherent in the dying process, and sometimes a person may pull through. 

If a care plan is in place, it needs be reviewed when it is recognised that a person appears to be dying, or if there is not currently a care plan, one should be created . Holistic support is important that considers psychosocial, spiritual, religious physical, and medical needs. Communication with anyone involved in care, and particularly with families (as well as peers), is critical. People with intellectual disability may have limited ability to report on their distress, so awareness of any behaviours that may be associated with pain or other distress are important.

Regarding communication, perhaps the most challenging aspect for many people is communicating with people with intellectual disability themselves around death and dying. For the general population, it's usually taken for granted that a person who is dying should be made aware that they are dying (so they can, for example, prepare for death); by the same logic, there should be effort for people with intellectual disability to be made as aware as possible that they are dying, assuming the person is open to this information. Glancing back, planning forward was cited by the organisers as a useful accessible tool for discussing plans for end of life. 

Indeed, for people with intellectual disability, communication will have to be tailored to the individual's level of insight and understanding. For someone with mild intellectual disability, there may be good scope for engaging in more complex conversations around factors such as preparing for funerals, life story work. For people with moderate intellectual disability, their understanding is likely to be more grounded in concrete experience (someone may have better understanding if they have previously experienced a bereavement). Regardless of someone's level of disability, offering closeness and just being there for the dying person is important.

Communication with family, in the context of intellectual disability, has often been affected by the high rate of people with intellectual disability living in residential institutions. However, regardless of the setting in which someone is living, families are likely to be experiencing grief. From my own experience speaking to families caring for someone with intellectual disability and dementia in the family home, their daily lives can become consumed with caring for the person with intellectual disability; it's likely some follow-up support will also be welcome for a family carer in this situation, after a person with dementia has died.  

There was an active panel discussion following Dr Ryan's presentation. Prof Michele Wiese and Prof Philip McCallion, two of the editors of the book, emphasised  how the book was written and edited during some of the hardest days of the COVID-19 pandemic, and various chapters throughout grapple with the added challenges of implementing the end-of-life care during a pandemic. Dr Ryan responded to a question on the difficult topic of assisted dying for people with intellectual disability by raising the point (relevant to the general population) that a lot of the demand for assisted dying may be related to currently unmet need in palliative care. Prof Mary McCarron noted how the book ends with a chapter on the future of end of life care, and on this note, Prof Roger Stancliffe noted that more work needs to be done on autistic people and people with cerebral palsy regarding end of life.

The book is out now - individual chapters are available for purchase for those interested in specific topics: https://link.springer.com/book/10.1007/978-3-030-98697-1      

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Restaurant review: Heaney's

 

For a trip to Cardiff, my wife and I treated ourselves to dinner at Heaney's, Romilly Crescent. It was Saturday evening, with a good atmosphere. (Night drew in over the course of the two hours). The service staff were kept busy more than busy - you could see they were up against it to get the multi course tasting menu in time to all the tables. The staff were never less than friendly, approachable and accommodating (particularly as I don't eat meat, apart from bivalves etc.) We were provided with a stack of cutlery for tasting menu (nice touch).

I had a glass of Mezza corona wine Pinot Grigio (light with a hint of pear, suitably versatile). We started with an oyster, complemented by cucumber and fermentation chilli for an Earth-and-Sea energy.

Next was Cheese & Onion: a little tart with black garlic, parmesan on top and a very rich, gooey, cheese filling. The pastry case was delightfully light.

Next we had Marmite sourdough. I went through a phase of eating Marmite with cheese toasties when I lived in Cardiff - so this really took me back. It was present with a cool wooden knife and marmite butter. The bread had a great crust.

Next was heritage tomato with pumpkin seed, flowers, goat's curd, and courgette spaghetti. This had a nice big hit of tomato. It was also served with a pleasant, herby gazpacho that altogether gave the dish a ratatouille vibe. 

 

A more substantial course of Asian-style celeriac noodles came next in a rich, dark-green sauce, with mini mushrooms. The noodles were thin but robust, and took on the deep umami flavour of the sauce nicely.

A possible favourite of mine was the scallop-this had a caramelized crust, cooked through but not rubbery, served with a lovely, citrusy seaweed beurre Blanc, gorgeous. Peas and grape gave a nice dimension of sweetness.

The next course was courgette, butternut squash, and almond. This was kinda like a victory lap, using a number of components of other courses. (Asparagus had been on the menu, but I presume this was out of season during our hot summer).

The last savoury course was the most substantial. It was a celeriac pithivier, warm and hearty, with a nutty layer atop the celeriac and a beautful pastry crust.

Dessert was chocolate orange. This had a crisp, nobbly exterior, somewhat reminiscent of various chocolate bars one might pick up in the newsagents. The intertio had a choc mousse with a jammy blood orange filling (great.

 

Having finished my glass of wine, I also got a glass of Pedro Ximinez for dessert (there was a choice of two Pedros); this was  syrupy with raisins. (Probably best for those with as strong a sweet tooth as I have).

We finished with an espresso and treats, (fudge, macaroon and strawberry pastille). Pastille had big hit of sweetness that reminded my wife of digging into a jar of jam, ho ho ho.

The menu at Heaney's is not cheap but is good value for what you're getting. The food is absolutely great.

Irish Research Staff Association: Annual Forum

 

The Irish Research Staff Association, an association that represents research staff across the island of Ireland, held its annual forum on Tuesday 21st June. It was great to see a good turnout, including PhD candidates, research scientists in industry and civil servants as well as university research staff.

As Chair of the Association, I opened with a brief speech before introducing Gordon Dalton, Chair of International Consortium of Research Staff Associations, to chair the first session. Gareth O'Neill, Technopolis group, has been representing researchers for many years, including with Eurodoc. He discussed the broader European framework for different categories of research staff. He highlighted challenges of research careers and staying in academia; although surveys generally show high rate endorsing a wish to stay within academia, this is becoming increasingly competitive. There are differences internationally-a good example is whether PhD candidates are treated as staff ((as they are in the Netherlands) or students (as they are in Ireland). If they are staff members, they get a number of entitlements that don't apply to students. 

Slaven Misljencevic, policy officer at Research & Innovation actors and research careers unit in the European Commission, spoke about the European labour market, and how mobility is cornerstone in establishing a European Research Area. He highlighted the work of Euraxess, a European portal with a database of jobs and funding opportunities. They have over 19,000 registered organisations, and an average of over 80,000 job posts(!) (Often used when the employers don't have an internal candidate lined up). Slaven also discussed RESAVER - an international, multi-employer fund that allows international researchers to bring their pension between different universities in different countries (however, not all universities are signed up to it).         

The first session had a lively discussion and Q & A - Tara Hughes (UCD) joined the session. She flagged the lack of exit data in universities in terms of staff who move on from a given university. Máire Brophy (TUS) said that what we lack in Ireland is a clear pathway to independence as a researcher; greater funding is required for this. She said she would like to see a full chart of where to go at what stage in a researcher's career, as there are still some gaps. The possibility of core funding for researchers was raised by Joan Donegan, former secretary of the Irish Federation of University Teachers (IFUT). 

The second session focused on equality, diversity and inclusion, with a particular focus on gender equality Dr Arjumand Younos, who works in industry, was the first speaker. Like many researchers who started off in a university, she segued from academia into industry, though she still teaches in universities. In a talk about how "the rich get richer", she made a point about how, in social networks, people with more connections get more connections, more citations get more citations etc. Dr Younos also spoke from personal experience of family responsibilities, and that other staff may unfairly perceive someone with such responsibilities as less of an asset to the team - indeed, staff can be under pressure to not start a family. The session was somewhat disrupted as it seemed to be hacked, and had to be closed to new guests entering.

Our final speaker, Joseph Twist, spoke about university staff increasingly having to be flexible in response to changing job contexts. He highlighted figures internationally - generally staff are on relatively precarious contracts. Like Dr Younos, he spoke from personal experience as well, in terms of his own difficulties with precarity earlier in his career. He pointed out the issue of two-tier system, where some people are well paid and very secure in their work. Pointed out that trade unions and grassroot networks, like the Irish Precarity Network, Postgraduate Workers Alliance, were a means to advocate for better conditions. There was some discussion about EDI - people may not be able to tick all the boxes if they've had a lot of adversity. Máire Brophy mentioned she had a SALI appointment which was in part created to address some of the imbalances. Joan Donegan suggested maybe we're hitting a turning point where research staff will start to get more organised to advocate for a better future. 

In her closing comments, Joan Donegan mentioned how the work of researchers in developing the COVID vaccine, which built on decades of previous research work, really underscored the importance of researchers. Joan lamented the move towards more of a business model in universities. Although I think there's a lot of good in preparing students for employment, Joan also referenced the ongoing cuts to recurrent funding post-austerity, precipitating funding crisis. There has been a large reduction in core staff numbers with this. Joan also mentioned the increased monitoring of HEI's by government-this contrasts with Irish Universities Act 1997, academic freedom etc. On a related note however, Joan highlighted that the government, particularly the Department for Further and Higher Education, Research, Innovation and Science, aims to reduce precarity. I think these closing comments highlighted the need for research staff to come together to advocate for better working conditions, as well as to collaborate.

Related posts

Future of Higher Education Funding

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Future of Higher Education Funding: Statement to Oireachtas

On Tuesday 8th March, I gave an opening statement on behalf of the Irish Research Staff Association at a Roundtable discussion on the Future Funding of Higher Education at the Oireachtas, at the Irish government building. Here it is:   

Text of Speech  

  

My name is Andrew Allen and I am the Chair of the Irish Research Staff Association, which represents salaried research staff in Higher Education.   

  

Táim bródúil as a bheith anseo inniú chun labhairt ar son daoine atá ag obair i réimse an taighde in Éire.   

  

Research is an investment that consistently makes returns that are greater than what we put in. Studies from the Science Foundation Ireland, Indecon and University College Cork estimate that for every euro invested in research, society reaps a benefit of three to five euro back to the economy. Research staff bring funding into universities, contribute to internationalisation of higher education, help to inform evidence-based policy and, although this is often under-recognised, contribute to teaching as well.  

  

Strategic investment in research is of benefit to various regions across Ireland, and investment in research capacity across our universities, new technological universities, IoTs and other HEIs across all regions will be a great local, regional, and national economic stimulus.  

  

Research careers in HEIs are currently characterised by precarity, with research staff generally being employed on fixed-term contracts tied to specific research grants. The high turnover of research staff within the HEI sector means that experience is often lost from this sector. Research staff can also end up devoting a significant amount of time to chasing research grants where only a small number of candidates will succeed. Given that Ireland has a demonstrable track record for producing long-term research (e.g. the study on which I am employed, The Intellectual Disability Supplement to the  Irish Longitudinal Study on Ageing), we should avoid precarity becoming part of policy.  

  

Coming from a background in psychology, I’m glad to see that mental health is on the agenda. A systematic review and meta-analysis found that job insecurity is associated with higher risk for depression and anxiety (Llosa et al. 2018). Precarity reduces the health and well-being of research staff, and their productivity with it. It harms not only individual researchers, but research groups and programs who have higher brain drain.  

   

In order to inform any policy making decisions regarding research and innovation it is firstly important to develop an accurate method of data collection regarding the numbers of research staff that is universal across all HEIs on the island of Ireland. Data on gender, ethnicity, international/ national status, level of seniority and contract type must be tracked over time and should include career outcomes of the researcher. Where there is aggregated data, it should be made easily available, to the greatest extent permitted by data protection law. Research staff should be able to communicate with large numbers of their peers quickly and easily, in order to maximise the potential for collaboration and avoid duplication of research effort. 

  

In terms of policy, research career frameworks are important for research staff. At the moment, a number of policies have been proposed that take an “up or out” approach, whereby research staff have to progress to a higher level within a relatively short period of time, or exit the system. Why is this problematic? Let’s look at the “up” part of “up or out”: Career progression is a good thing, but there is a lack of funding in place for research staff to progress.  So, they use increasing amounts of labour hours, paid for by the taxpayer, chasing increasingly competitive grants that they’re less likely to get. Research staff who are generally least able to absorb risk, are the ones who take on the bulk of the risk. And what about the “out” in up or out? Some researchers may wish to stay within a particular role at a given level, drawing on years of experience to perform high quality research, but risk being pushed out of the system when we take an “up or out” approach. The Higher Education Research Group has previously proposed a funded research framework in the late noughties; this is a model we should bring back.  

  

A possible solution to enable research staff to continue contributing to academic research is for funding agencies and HEIs to put in place staff scientist positions (and equivalent positions for arts and humanities), thereby creating alternative attractive career progression routes within academia. A report from the National Research Council (2014), for example, recommends raising the salaries of research staff to “appropriately reflect their value and contribution to research”. Unless the career prospects for early career researchers are improved, we risk losing the talent that will be essential for our future progress across all areas of research.  

   

Alternative career paths, where research staff segue into roles more focused on other areas such as teaching or professional services are to be encouraged, but they should not be seen as the necessary goal of all research staff.  

  

I’m here today not simply to advocate for research staff, but for a sensible policy of investment that benefits everyone. Given the return to Irish society evidenced by research, we know that investment in retaining research staff is a win-win. I look forward to participating further in this process.  

  

Táim ag tnúth go mór le páirt a ghlacadh se cómhrá seo. Go raibh maith agaibh.