Who Bears Responsibility for the Post-Acute Older Adult: Patient, Family or State?

The COVID-19 pandemic awakened international consciousness regarding the vulnerability of the world’s elderly and, in particular, the post-acute-care elderly (Gray-Miceli et al, 2020). Internationally, legislative frameworks have been developed or reformed in recent years, to support advance care planning and assisted decision-making in healthcare (Ní Shé et al, 2018; Dowling et al, 2020). However, while different jurisdictions employ a variety of approaches, universal uncertainty remains about how to support healthcare decision-making in older adults across the geographic divides (Donnelly, 2019). International research acknowledges increased care need of the older adult following a hospital stay (Sacks et al, 2015; Lichtman et al, 2020; Vilches-Moraga, 2020; Lee et al, 2022). However, it is largely unknown who exactly provides this care to the older patient (Beard and Bloom, 2015; Kottow, 2018). Claims of ‘informal family carers’ and ‘community supports’ are evident across the literature but are largely unquantified internationally (Beard and Bloom 2015; Kottow, 2018).

Equally, there has been little research internationally on assisted decision-making in regard to older adults at the time of hospital discharge before being sent back to the community. What we do know from recent UK and Irish studies is that community care services for older adults following hospital discharge are fragmented, leading to inefficiencies and adverse patient outcomes (Kennedy et al, 2021; Singh et al, 2022). This exploration of the issues that Advance Healthcare Directives (AHDs) and assisted decision-making raise for older adults and their families, clinical services and policy, is appropriate at this point. The study was carried out in Ireland, where the legislative framework on AHDs is in its infancy. However, given the similarity of Ireland’s fast-growing elderly demographic to many of its neighbours across the developed world, coupled with the universal confusion expressed by healthcare professionals on how to implement assisted decision-making into patients’ healthcare, many valuable lessons are identified for policymakers across the globe.

The legal position

Ireland’s legislation in this area—the Assisted Decision-Making Capacity Act (ADMCA) (Goverment of Ireland, 2015) promotes patient autonomy and seeks to empower patients to express their will and preferences regarding healthcare decisions in advance of a time when they may no longer have the capacity to do so. Ireland’s (2015) legislation legalised Advance Healthcare Directives, which is comparable to the UK’s Mental Health Act (UK Government, 2005). The United Nation’s Convention of Rights of Persons with Disabilities (2006), the European Convention of Human Rights (2003) and the Hague Convention on the International Protection of Adults (2000) have stimulated a legislative move away from the ‘best interest of the patient’ model to the person’s own will and preferences. The Irish legislation was only fully enforced in April 2023 after almost 8 years, due to the professional uncertainty that pervades moving forward in this area (Irish Hospice Foundation, 2016; O’Donnell et al, 2018, Donnelly, 2019). This professional uncertainty is mirrored across the international landscape where the implementation of advance care planning and assisted decision-making is poorly understood or causes conflict (Sumrall et al, 2016; Banja and Sumler, 2019; di Paolo, 2019; Moore et al, 2019; Borasio et al, 2020; Health Service Executive (HSE), 2020; Gray-Miceli et al, 2020). Furthermore, this lack of clarity has been highlighted globally by the COVID-19 pandemic, which moved all countries’ challenges in caring for their older adults firmly into the spotlight (OECD iLibrary, 2021).

Ethical approval

Ethical approval was granted from South-East Technological University’s Research Ethics Committee and the Research Ethics Committee, Health and Safety Executive, South East, Ireland.

Research design

This study uses a qualitative methodology design. A total of five focus group (FG) discussions, with 23 discharge co-ordinator nurse participants, were held across the South-East of Ireland. Of these, four took place in large acute hospitals, while the fifth FG was held in a large rehabilitation unit. The real strength of FGs is not simply in exploring what participants have to say, but in providing insights into the sources of complex behaviours and motivations (Jayasekara, 2012).

Sample group

Discharge co-ordinators were chosen for this study because of their strong links to the patient, the family, and State services alike. The terms ‘discharge co-ordinator’ and ‘discharge planner’ are used interchangeably across the five hospital centres. Day et al (2009) asserted that they have significant communication links to the multi-disciplinary, public health and community teams, along with excellent knowledge of community supports. Non-random purposeful sampling was used to recruit the study sample. Homogenous purposeful sampling is where participants share similar characteristics (Etikan, 2016) and are willing to provide information that they have gained through knowledge or experience (Bernard, 2002). A gatekeeper for each research site was identified early on in keeping with research studies such as McFadyen and Rankin (2016). Each research site was contacted at the outset to link with the lead discharge coordinators, who were utilised throughout the process as gatekeepers. A total of 23 hospital discharge personnel agreed to participate in the study to share their experiences (Table 1). No participant left the study without completing it.

Discharge planning is a complex area of practice in Ireland (Day et al, 2009) and the structure of discharge departments and personnel appears to vary from hospital to hospital. This appears similar to the situation in the UK, where, Hayajneh et al (2020) asserted that a UK discharge planner can be a nurse, a social worker or any other healthcare professional related to the case. In this study, one centre visited had no formal discharge ‘department’; however, they had two discharge planner nurses who worked closely with the hospital social worker and ward staff, to get people home safely. Another centre had recently created a new ‘Patient flow’ department that comprised a clinical nurse manager at its head, in charge of patient flow, with two discharge coordinator nurses, a dedicated social worker and a dedicated occupational therapist to support patient discharges. Another centre had a specialist geriatric emergency medicine (GEMS) multi-disciplinary team, with a home-GEMS team specifically to support frail, older people make the transition from hospital to home, as well as a dedicated discharge planner. In other centres, nurses were the key staff in terms of communication with community supports at the time of discharge—a picture that Donovan et al (2017) insisted is common. Therefore, it is reasonable to conclude that a lack of standardisation exists in Ireland in this area.

Due to the individual nature of the staffing structures of discharge departments in each hospital, it is impossible to estimate the population size of discharge co-ordinators. Moreover, Day et al (2009) and Donovan et al (2017) contended that staff nurses have significant responsibility for patient discharge decisions across most hospitals, making accurate quantification of this group difficult. Speaking to ‘official’ discharge staff on the days of the FGs, formal discharge department size varies from two to seven personnel. However, all attendees accept that a wider number of staff have a role in the discharge process.

Data collection

Each FG lasted between 50–80 minutes and was audio recorded. The timeframe for undertaking these five FGs was from September 2020 to November 2020. The geographic spread involved both a rural and urban caseload and encompasses all of Ireland. All participants were given prior notice of the study via communication from the lead researcher to their lead discharge co-ordinator through information packs, which were sent to all five sites in the geographic area by the lead researcher. The focus groups then took place in a meeting room on the study site in line with the COVID-19 restrictions of the day. A single list of questions, or topic guide, was used to guide discussions across the five sites. These sessions were audio-recorded with the consent of the participants. Anonymity was upheld by giving each attendee a number, which was later used to transcribe the discussion.

Data analysis

The audio recordings were transcribed solely by the lead researcher. The QSR NVivo 12 data management program was used to code the transcribed data. The Braun and Clarke (2006) method of reflexive thematic analysis was chosen to analyse the data in this study. Thematic analysis was identified as the method most appropriate for analysing the data at hand, as it can summarise key features and offer a ‘thick description’ of large chunks of data as well as generate unanticipated insights (Braun and Clarke, 2006). Moreover, it is appropriate for social interpretation and therefore, useful to inform policy development (Braun and Clarke, 2006).

A total of three themes were created from the data:‘burden of care’, ‘locus of control’, and ‘the role of the nurse’. These three themes with their various sub-themes are detailed in Table 2 and are further illustrated using quotes from participants. It is important to note that each theme and sub-theme was strongly supported across all five FG sites.

Results

The FGs reported an extremely low awareness of, and exposure to, assisted decision-making and AHDs across all five research sites. However, all participants in this study report that they think advance care planning and the creation of AHDs is a positive thing:

‘Oh, definitely a good thing. I mean … our conversations are all around ‘Have you thought about the future? Have you made any plans? Have you discussed this with your carers?’ 9 out of 10 have not. So, we start that discussion with families.’ FG 5, Participant 1

Burden of care on families

Participants demonstrated general agreement on the magnitude of the care burden, and the stress that this can cause for today’s modern family:

‘And suddenly, this burden, as they see it, is thrust upon them, to care for this ageing relative when they’re working. Most people work now as well. We all work full time. Have kids. Life is very different to how it might have been 20 years ago, you know? And they expect the HSE …and the call is 20–30 minutes, an hour and a half in a day, Monday to Friday, is the maximum package. There’s 22 or more hours in the rest of the day. People with dementia need to be supervised. You know, there’s no doubt, it’s very difficult.’ FG 1, Participant 1

All participants agreed that a national conversation about future care planning is helpful to bring this care burden into focus, and get people thinking and talking:

‘It is interesting because nobody has had a national conversation about this before. About whether it does come down to State, family or person? I think we can all be magnificent until we have a sick parent, and then realise how tight our time is and how tight our resources are and all the rest of it…’ FG 1, Participant 2

Frail carers: an emerging phenomenon

Participants were keen to identify an emerging care burden phenomenon that involves already frail or elderly individuals providing care for equally or more frail and elderly relatives with substantial care needs:

‘You see these frail old ladies…and they want them (their relatives) back but they couldn’t lift them or anything. I saw a daughter the other day, she was…67 years old and the mother was 94 years old…the carer was nearly as frail as the patient, you know? It’s really tricky when you see those cases. Yeah, there are people in awful situations like this.’ FG1, Participant 3

Families who live away from home

Consensus existed among study participants that the practical realities of the care burden are often not fully appreciated by families living away from the immediate care situation:

‘…a family that might not be living at home or involved in the caring might have different expectations to the family that are involved on a day-to-day basis. …I have one couple telling me ‘If he comes home, my marriage is gone.’ You know? And I think that family living away in Dublin wouldn’t necessarily have the insight into that. FG2, Participant 1

Inadequacy of home care services

Participants were keen to highlight a critical anomaly that exists in this area. The inadequacy of community and home care services was identified by participants at all five sites:

‘The relatives go on and on about the homecare package, asking ‘is it in place?’. Then you break it down for them and they realise that it’s only a half hour here and another half hour later, and that that is ‘the package’. For some people, when you break it down and see the gaps, it’s just not realistic. I think when they break it down, they realise it’s not what they thought it was.’ FG 2, Participant 1

Capacity

Another sub-theme taken from the data under this theme concerned a ‘grey area’ or ‘limbo’ identified by participants, where a patient’s capacity is in question, but no formal diagnosis of Alzheimer’s disease or other dementias has been made. Participants pointed out that this creates huge problems when it comes to abiding by the spirit of the legislation and supporting patients’ choices, noting it as ‘a huge thing now’ (FG 3, Participant 4) and ‘impossible’ (FG 1, Participant 5);

‘…for people who don’t have capacity, how are we going to send somebody home? You know, home alone. With no help…if that’s their wishes? Can you do that? I don’t know.

Is that neglect?’ FG 1, P2.

Locus of control

Locus of control is the degree to which people believe they can control situations and events. This theme was divided further into sub-themes of patient, family, State, and what beliefs each cohort held about (1) who had decision-making power for the older adult and (2) who was responsible for their care. For clarity, the term ‘State’ in this instance includes the Government, the HSE, and all social and health care professionals. An incongruence of beliefs between the three cohorts emerged here that is in direct conflict with the locus of control. This is outlined in Table 3.

Patient beliefs

Who the patient believes has decision-making power

Primarily, participants agreed that patients generally think that they can manage their own care and make their own decisions about their life choices:

‘I think most patients think ‘I can look after myself.’ You know? ‘I can do it.’ They just feel that they’re still able, no matter what age they are. If they were 90 or 100, they’d still feel they’re able. And have control…at home.’ FG 2, Participant 1

Who the patient believes is responsible for their care

Older patients can often show poor insight into their ability to manage in their own home without support. One participant explains below:

‘People sometimes say to me that they don’t want to be a burden, but that’s very easy to say when you are mobile, when you can climb stairs and make your own meals or you can drive your car, but when it comes to a stage when the driving stops…. Or they’re able to potter in the house, and then they’re not able to potter any more, and then it’s carers in, and the family rota…. But I don’t think they see it as being a burden. It’s just another little bit down the road.’ FG 2, Participant 1

Family

Who families believe has decision-making power

Emotions were heightened during all five FG discussions in this area—participants reported feeling frustrated and saddened at how families believe they can make decisions for adult relatives, and demand to do so. Participants were eager to share their stories of how difficult it can be to persuade families that it is the patient’s decision:

‘…families believe—I mean every single person we have coming in here—families believe they can dictate what happens to their loved one. It comes back to when does a patient stop being an adult? And making their own decisions?’ FG 5, Participant 2

Moreover, participants reported a high level of families trying to exclude their elderly relatives from discharge discussions altogether;

‘When families come into a meeting, they don’t necessarily want their parent at the meeting. They want to meet with us and tell us what they want. But they don’t necessarily want their Mam or Dad or aunt or uncle or whoever…[at the meeting].’ FG 2, Participant 1

Who families believe is responsible for care

Here, participants became visibly animated, eager to vent their shared frustration as they described how families believe that care of their relative is not their responsibility, but that of the State:

‘The State, in the sense that it’s the HSE’s job. ‘It’s the State’s job, it’s not mine’.’ FG 5, Participant 2

‘Well, people have huge expectations these days of the state, of you, they just say ‘Well, I can’t do it!’ FG 1, Participant 4

Participants all eagerly nodded assent as the nurses recalled stories of a time when a family refused to participate in the care of their older relative:

‘I think the family expectations are getting greater. That would be my experience of it. Now, obviously, you have some families that are so appreciative of any little bit you can help, but, in general, I suppose you would get families, I think, who feel they have an entitlement to it. Entitled is generally the word that would be used by families about home care; ‘but, we’re entitled’.’ FG 2, Participant 2

When families refuse to take relatives home

Study participants reported that it is common, in reality, for families to simply refuse to take a relative home from hospital, causing severely delayed discharges. One participant explained how this can manifest in real terms;

‘We get a lot, don’t we?, of ‘Now, I can’t take her home’ ‘I no longer can cope’, ‘I can’t take her home’. Basically, we’re told —‘it’s your problem now’, ‘I’m not taking him or her home’. I was told that now on Friday, by a family member.’ FG 1, Participant 6.

State

Who do healthcare professionals believe has decision-making power

There was unanimous agreement across the research sites that healthcare professionals believe the patient is central to their own decisions:

‘We would be very much the patient’s advocate, you know? With what they want. We listen to what they want and try to do our best for them, regardless of what the family might think…the person themselves should have a say in what’s going on with their life…’ FG 4, Participant 2

Who healthcare professionals believe is responsible for care on discharge

Study participants, by and large, believed that family do not bear any formal responsibility for care of the older patient on discharge home. However, participants became animated as discussions progressed on this topic, with some arguing that family have a ‘role’, no matter what.

One participant outlined their thoughts on family responsibility:

‘You have no responsibility to anyone as a person. Only I have a responsibility for my children up to the age of 18. I have no other responsibility for any other adult. So, legally, and that’s the position. Your only responsibility is to your own children or children under your care. You have no responsibility to any other adult. You take it on yourself. But you don’t have the responsibility beyond your children.’ FG 3, Participant 2

One participant explained that family decision-making and responsibility is not straightforward, but a complex issue:

‘So, we meet, and we are involved with, 40% of over-70s in this hospital. Every day. And there would be a percentage of them who do have a cognitive impairment, relying on their family for support to stay at home. So, we appreciate their concerns, their worries, and wanting to be involved in everything. It’s a grey area, isn’t it? It’s a very fine line.’ FG 5, Participant 1

Role of the nurse

Participants were generally in agreement that discussions around advance care planning and end-of-life are ‘sensitive’ (FG 2, Participant 2.), ‘uncomfortable’ (FG 3, Participant 2) and can be ‘difficult to initiate’ (FG 4, Participant 3). Equally, the majority of participants insisted that the acute hospital is not the correct setting in which to commence advance care planning.

Role confusion

Participants appeared evenly divided between those who completely reject it as part of their role and those who were happy to embrace it as part of the nursing role. Conversely, several participants accept that initiating sensitive end-of-life care planning, and discussions around these plans, is very much a part of their nursing role, and they insist that nurses are improving in this regard:

‘I think it’s something, really in the last two years, I’d say that we’ve become very open, we have moved forward in our planning. From about 2 years ago.’ FG 4, Participant 3

Education

When discussing the rollout of Advance Healthcare Directives, participants across all five sites were unanimous in their agreement that more education was needed to increase awareness for all parties—patients, healthcare professionals and the public:

‘…I think education is big, because I think a lot of people, even within the service, might not necessarily know about all this. I do think even education for the clients themselves…would be good.’ FG 2, Participant 2

Finally, while acknowledging the myriad of problems that come with Advance Healthcare Directives, participants were eager to point out that having a plan is markedly better that having none, as one participant summarised:

‘The most complex situations arise when there is no preparation made, in legal terms or medically…. The more a person plans ahead, the more that’s written down, I think it helps everyone.’ FG 3, Participant 2

Discussion

Burden of care

The findings largely supported the existing body of evidence in the literature (Dowling et al, 2020) that the burden of care for families can be overwhelming.

Capacity and professional uncertainty

Participants were extremely eager to note how this burden of care intensified exponentially when capacity became an issue, such as with dementia. Capacity was highlighted repeatedly by all as the indeterminate state that cannot be legislated for. The safety concerns expressed by participants when a person wants to go home but is not safe to be at home are real, and moral distress is palpable among participants during discussions on this topic. The professional uncertainty expressed by participants in this study mirrored that observed in previous Irish and International studies (Irish Hospice Foundation 2016; O’Donnell et al, 2018; Davies et al, 2019).

Frail carers

The emerging trend of elderly and frail carers highlighted by participants in the findings was consistent with the findings of McGarrigle et al (2020), who asserted that 31% of adults over 70 provide help and care for other older adults. This same study also identified significant frailty in this over-70 cohort, meaning that almost one third of Ireland’s carers themselves require some care and support in the community. This is a highly significant finding for policy makers planning future investment in home care services.

Inadequate home care services

This finding was consistent with a previous study by Garavan et al (2001), who noted a marked increase in the older population but a decrease in the number of available carers. A home care package is provided in Ireland by the HSE to allow patients to live optimally and independently at home. This ‘entitlement’ to a home care package is tailored to care need, which is measured during an assessment carried out by a Public Health Nurse or community nurse (HSE, 2022). It may include delivery of meals on wheels, an allocation of hours for personal or home care visits by a nurse or home help. These may be weekly or more regular to a maximum of three 30-minute visits a day, Monday to Friday, and are tailored to care need. This service varies by geographical area. The current shortfall in home care services is due to a lack of both financial and human resources, and a lack of strategic planning (Department of Health, 2018). However, it mirrors the situation across the United Kingdom (NHS Wales, 2020), Australia (Harrington and Jolly, 2021), New Zealand (Houlahan, 2019) and the US (Woodford, 2020).

Locus of control

This study’s findings are the first of their kind in Irish Nursing and are therefore, highly significant in several respects, not least because they identify the Irish family as a barrier to supporting the legislation in real terms.

There are several possible explanations for the incongruence of beliefs and the unrealistic expectations attributed to Irish families in this study. It could be a legacy issue, stemming from a culture that historically has not engaged in advance healthcare planning; from decades of families choosing longterm residential care on behalf of their older relatives, without seeking the patient’s own will and preference.

It is worth noting, in the interest of context, that Ireland’s life expectancy has increased in recent years with female life expectancy (83.4 years) on par with its European counterparts and male life expectancy (79.6 years) exceeding that of the European average by over a year (Department of Health, 2019). As a result, Ireland’s over-65 population has grown exponentially in recent decades to a current estimate of 637567 (Central Statistics Office, 2016). Coupled with this, it is estimated that Ireland currently has 55000 people with dementia (Cahill et al, 2014). To further add to context, we currently have 581 designated centres for the elderly (nursing homes) ranging in bed capacity size from less than 20 to 184, resulting in an estimated bed capacity of 31251 (Health Information and Quality Authority, 2019). These centres currently work at capacity. Moreover, a high number of acute hospital beds in Ireland facilitate older adults and 35% of acute hospital beds facilitate persons with dementia, many of whom die in acute hospitals (de Siún et al, 2014). This is largely representative of a pan-European picture (OECD iLibrary, 2021; Sillitti, 2021). Phelan et al (2018) assert that Ireland’s diverse and overburdened ‘jack of all trades’ community nursing workforce is also working at full capacity. Phelan et al (2018) study further claims that the community nursing workforce similarly struggles to manage its existing workload, without adding another significant task, such as advance care planning to its heaving portfolio. It is not surprising that family members are often compelled to take over decision-making following an older adult’s health crisis. Equally, given the context provided, it is not unexpected that families harbour an expectation of State-provided care for their older relatives. This is further supported by the family’s lack of formal responsibility when the patient is ill.

Role of the nurse

It is interesting to note the dichotomy of views on whether supporting advance care planning is part of the nursing role or not. Previous international studies have identified role confusion as an issue across the disciplines (Robinson et al, 2013; de Vleminck et al, 2014; Chan et al, 2018), but no studies have been conducted yet, that offer an Irish context.

Conclusion

The terrain surrounding care of the older adult in terms of supporting their decision-making is complex and challenging for the community nurse. The voice of the discharge coordinators in this study consolidates the views expressed previously by community nurses on human and financial resource shortages, and the ongoing challenges faced by them daily in trying to support their patients and their will and preferences to remain at home. Policy-makers need to take the issues identified by the discharge coordinator nurses in this study on board to ensure optimal provision of care services in the community going forward.

It is vital that community nurses continue to be personcentred and champion the will and preferences of older adults, to ensure that they are empowered to actively participate in their own healthcare decisions. Community nurses will achieve this through their valuable input in the community, initiating advance healthcare planning discussions with their patients and by encouraging older adults to plan ahead.

Key recommendations from this study include increased government investment in community-based and home health support services for older adults and the empowerment of our community nurses in this challenging area.

Key points

• The high burden of care on families is further complicated by scarce and inadequate community homecare services
• Families mistakenly believe that they have decision-making rights for their older relatives
• The role of the nurse in Advance Healthcare Directives and assisted decision-making requires education

CPD reflective questions

• What does the new legislation change in terms of supporting an older adult to make a healthcare decision?
• Discuss how you would support a family member who wants to make a healthcare decision about their older relative without their relative’s consent
• What are the priorities for nurse education in the area of Advance Healthcare Directives and assisting patients to make healthcare decisions?