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Abstract
Background The importance of the therapeutic relationship in the delivery of palliative care is well recognised. Little has been published on the nature or quality of relationships formed between staff and patients with intellectual disabilities despite case reports suggesting that difficulties exist in providing palliative care to this group.
Aims This study was part of a project that aimed to describe the delivery of palliative care to people with intellectual disabilities in a region of Ireland and to conduct a corporate assessment of palliative care need. We detail findings that explore the nature and importance of the quality of relationship in the delivery of care.
Methods 91 staff from palliative care and intellectual disability services participated in 16 focus groups.
Findings Staff valued their relationships with service users, and felt that the quality of their relationship affected its therapeutic potential. Participants described factors fundamental to the development of quality relationships. Palliative care and intellectual disability staff commented on the importance of trust, of continuity of relationship and of knowing the individual. However, palliative care staff admitted to difficulties in these areas when providing care to people with intellectual disabilities. It appeared that quality of care was affected in situations where staff failed to form authentic relationships.
Conclusions This study adds to our knowledge of the processes of delivery of care to people with intellectual disabilities. The description of difficulties experienced by palliative care staff gives us an opportunity to develop strategies to improve the quality of services provided.
- Palliative Care
- Intellectual Disability
- Learning Disability
- Patient Professional Relationships
- Communication
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- Palliative Care
- Intellectual Disability
- Learning Disability
- Patient Professional Relationships
- Communication
Introduction
There has been a growing focus on the delivery of palliative care in recent years, and as a result, we have improved knowledge of the processes of care for the general population towards the end of life. However, there has been relatively little research carried out on the palliative care needs of people with intellectual disabilities and literature reviews have pointed to the fact that case reports remain the most common method of exploring relevant issues.1 These case reports suggest that people with intellectual disabilities experience significant inequalities in access to, and provision of, palliative care services. The WHO has drawn attention to the need for work to be conducted to address the issue.2 The fact that there has been a serious lack of service planning to meet the future needs of people with intellectual disabilities as they age makes the problem an urgent one.3
Both the general healthcare and palliative care literature recognise the importance of the therapeutic relationship as the basis for practice and the means by which healthcare professionals engage and hope to effect changes with patients.4 ,5 However, it has been noted that staff who do not usually care for people with intellectual disabilities are frequently afraid of providing such care and, as a result, can be reluctant to do so.6 ,7 It has also been observed that intellectual disability staff often lack skills and knowledge in the provision of end-of-life care,8 and that primary care and palliative care staff need to provide significant assistance to enable intellectual disability staff to manage with providing such care.9 It may be hypothesised that the quality of the therapeutic relationship is compromised in such circumstances, but to date little published data are available to help us understand the ways in which this might occur or the means by which we might improve care which is delivered.
This paper aims to contribute to knowledge in the area by reporting findings from a series of focus group interviews in which stakeholders discussed the provision of palliative care to people with intellectual disabilities.
Aims
This study formed part of a project that aimed to describe palliative care delivery to people with intellectual disabilities in a region in Ireland and to assess the population's palliative care needs.10–13 In this paper, we report on findings from focus group discussions which explore the nature and importance of the quality of relationship in the delivery of palliative care to people with intellectual disabilities.
Setting
The sample was recruited from one Health Service Executive area in Ireland. The area is served by one specialist palliative care service and three sizeable intellectual disability organisations. It is a predominantly metropolitan area and has a population of 486 000 people with 2826 people registered as having an intellectual disability
Methods
Local research ethics committee approval was received, and a purposive sample of participants was drawn from the four organisations involved in the study. Participant characteristics were used as the basis for selection in order to cover a range of subgroups within the population. These included occupation, place of work and level of experience in providing palliative care to people with intellectual disabilities.
A total of ninety-one staff participated in 16 focus group discussions. Of these, 27 participants worked in specialist palliative care and 64 worked in intellectual disability services. Seventy-nine participants were female and 12 were male. Participant occupations are listed in table 1. Focus group interviews were carried out in the respondents’ places of work, and a topic guide was used to structure the interviews (box 1). This provided some focus for discussion while allowing participants to raise salient issues. Interviews were of 40–70 min duration.
Participant occupations
Topic guide
Topic 1. Exploring participants’ personal experience of caring for someone with intellectual disability (ID) towards the end of life
Thinking back to the experiences that you have had, caring for a person with ID towards the end of life....
Can you describe what happened? Can you tell me about your experience? What things went well when providing care? What didn't go well or what difficulties did you encounter along the way? What suggestions would you have for doing it better next time?
Probes:
Diagnosis (including stage of illness at which diagnosis made)?
Communication experiences?
Symptom control experiences?
Ethical issues?
Understanding/experience of death and dying? Spiritual experiences?
Family experiences?
Bereavement experiences?
In what ways do you think that the experiences that you had (positive/negative) were similar to caring for a person without ID? Were there differences? If so, what were they? How were they different? In particular, what needs did the person with ID have at that time?
Topic 2. Things that are important in ensuring the goal of a ‘good death’ for people with ID.
It is often said that the goal of palliative care is in achieving a ‘good death’ for the person. What do you think that the concept of a ‘good death’ means in the context of caring for a person with ID? In what ways is this similar to or different from the idea of a ‘good death’ for a person without ID?
Probes:
Autonomy/control/closure
Symptom control
Dignity
Spirituality
Family/significant other involvement
Preferred place of care
What do you think are the important factors that can ensure the goal of a ‘good death’ for a person with ID?
Topic 3. Confidence in provision of care to a person with ID towards the end of life.
When you came into this job, did you think that part of your job would be caring for people with intellectual disability towards the end of life? What do you think of that/how do you feel about that now?
How confident do you feel about your ability to provide care for people with intellectual disability towards the end of life?
What skills or knowledge or strengths do you think you have?
Do you have any concerns or worries about your ability to provide care? If so, what are they? What skills or knowledge do you think you might lack? Is there anything that you could think of that would be useful to you as a way of adressing deficits? Explain/describe.
Topic 4. The role of different service providers in the provision of care towards the end of life.
When you think of the care that is given to people with ID at the end of life, how much of that care do you think is provided directly by the ID service providers?
How does this compare with the care provided by specialist palliative care teams/hospitals/GPs and primary care teams/families?
What role do you think the ID services should play? Why?
What role do you think the specialist palliative care services should play? Why? What has been your experience in terms of people with ID accessing palliative care services?
Topic 5. Effect of deaths on service users and service providers:
Does the illness and death of a client affect you on a personal level? In what way/how does this affect you?
How about the effect of a client's death on other service users? Describe/explain.
The definition of the term ‘family’ has changed a lot in recent years. What does the term mean to you, in the context of a client who has been in residential care for a long period of time?
Probes:
Do you consider staff to be ‘family’? Explain.
Do you consider service users/clients to be ‘family’? Explain.
Do service users/clients consider staff to be ‘family’? Explain.
Do service users/clients consider other service users to be ‘family’? Explain.
Topic 6:
Anything else to say before we finish? Anything that we've left out, or that people feel that they haven't had a chance to say?
Analysis
Interviews were recorded, transcribed, anonymised and then analysed using ‘Framework,’ a method that uses content analysis to study qualitative research data.14
Framework categorises and interprets data in a thematic manner. Every transcript is analysed within a common framework, and the validity and reliability of findings are enhanced by the transparency of the method used.
Findings
The importance of effective therapeutic relationships between staff and service users
All staff placed valued patient-professional relationships highly, and felt that the degree to which the relationship was person-centred impacted on its therapeutic potential. Experienced, familiar people were thought to provide best care because of their in-depth knowledge of the individual, and this was considered to enhance the carer's professional skills across a number of domains that included communication, symptom management, provision of psychosocial support and decision-making. However, palliative care staff were acutely aware of their lack of experience in dealing with people with intellectual disabilities in comparison to their significant experience of caring for the general population. This awareness often appeared to make them hesitant to engage directly with the person, which was in stark contrast to their usual practice. Instead, palliative care staff relied on carers to act as an intermediary:I have very little personal experience in dealing with people with learning disability in this context. I would certainly… family, carers… I would really consult with them in the first instance- before going to the patient even. I think, as you [other participant] were saying, people who have known the person for x number of years, we- as professionals- are new on the scene so it would be very much dependent on what they would have to say.
(Focus group 3; R6: 633–9)
Participants described a number of factors that were fundamental to the development of the relationship between a healthcare professional and the person with intellectual disability. There was striking agreement between intellectual disability and palliative care staff on these factors, and participants spoke of the importance of trust, of continuity of relationship and of ‘knowing’ the individual.
The importance of trust
While trust can be built in a number of ways, intellectual disability staff emphasised the importance of time to this process. They spoke of the fact that relationships with service users had grown over the years and that often service users had needed time to come to trust them, as illustrated by the following excerpt:FP4: It's a long process for the women to trust you.
FP1: Yeah.
FP4: For the women to want to talk to you or to open up to you, or anything like that.
(Focus group 11; FP4 &1: 602–5)
Participants were conscious of the fact that the majority of service users who lived in residential settings had experienced a number of losses over the course of their lives. Historically, older residents had suffered traumatic separations from their families when they had been placed in institutional care in their early childhood. It was clear that the effects of this had been long-lasting, “That has been a huge element for the ladies… the coming in… the fear… knowing nobody. Parents or a sibling leaving them… and them knowing nobody, and being on their own. It's huge” (Focus group 14; R: 284–6). Service users experienced additional losses when friends or family members died and when staff moved workplace.
Intellectual disability staff were aware that such losses often profoundly affected the development of new relationships and they attached great importance to the trust that service users placed in them. A participant descibed the effects of losing the trust of the person with intellectual disability as “...They don't trust you or something, you feel that they're not communicating, that they're going back into themselves or something like that, do you know what I mean?” (Focus group 8; R2:552–7). It was apparent that participants were often deeply moved when caring for service users towards the end of life, and that they experienced feelings of guilt and inadequacy if they felt that they had betrayed the trust of the individual by failing them at this time. Intellectual disability staff spoke of difficulties that they had experienced in symptom management, in decision-making and in ensuring continuity of place or care towards the end of life. The emotional consequences of being unable to optimally meet such responsibilities as this were vividly described by one doctor: “It will never, ever leave my mind... I felt that I really failed this person” (Focus group 16; R5: 205–26).
Palliative care staff also recognised the importance of trust in relationships and were skilled in developing this with members of the general population. They stated that people with intellectual disabilities, however, already had close relationships with formal and informal carers, and they found it much more difficult to develop similar relationships. One nurse described a common experience with the words: “… She had that trust relationship with the family, and we were strangers coming in. She was always very afraid of us, or any change” (Focus group 2; R4: 163–5). Intellectual disability staff agreed that people with intellectual disabilities often reacted to unfamiliar staff with fear or anxiety and expressed concerns about the need to look to outside staff for help: “I suppose the other thing about it is, you know, what you'd worry about is a different nurse coming in. That can be quite frightening to a person with a disability, you know” (Focus group 7: R3: 594–7).
The importance of continuity
The importance of maintaining familiar environments and carers was highlighted by nearly all groups as being a crucial element of quality care for people with intellectual disabilities. Although it was acknowledged that continuity is an important issue for members of the general population, it was thought that people with intellectual disabilities experienced disturbance as particularly stressful. Participants noted that making changes to a person's familiar environment was often associated with deterioration in that person's functional abilities. Staff commented that many people with intellectual disabilities had negative experiences of change in the past, and that this still resonated with them in later life. Palliative care staff described how people with intellectual disabilities required more continuity of care than current working practice allowed: “I find that people with learning disabilities… for a lot of them they take a long time to form a relationship with somebody. I mean, we've different staff going in… They can't identify with different people all the time. They need more familiarity” (Focus group 2; R5: 643–6).
The importance of ‘knowing’ the individual
Both palliative care and intellectual disability staff agreed on the importance of ‘knowing’ the individual service user. This meant that carers knew the service user as a person and understood their typical responses to situations. Intellectual disability staff spoke of the added importance of such knowledge when interacting with people with intellectual disabilities because the presence of communication impairments meant that many service users were unable to communicate easily:R2: Especially because each of us would have a client issued to us, you know what I mean. So you kind of get to know everything, so you do… even their favourite colours… their whole background, and their families.
R1: But we nearly need to have to. Because they don't talk to us, you need to get that bit deeper to really find out what's going on.
R2: So to get them more comfortable. You're not just using your own intuition, you're using theirs as well. Communicating with them.
(Focus group 8: 104–113)
While palliative care staff were usually able to gain an understanding of their patients, they found this more difficult when engaging with people with intellectual disabilities. Frequently, palliative care staff did not engage in direct communication with the person with intellectual disability but rather utilised a three-way communication process involving patient, carer and staff. This meant that they tended to form relationships where it could not be said that they truly ‘knew’ the patient, but rather remained dependent on other carers for knowledge and understanding. In such cases, the relative or carer from the intellectual disability services was always regarded as being the person who had much more insight into the person with intellectual disability.
This practice appeared to be the norm and was only challenged by a few participants who had previous experience working in the area of intellectual disability and who recognised the potential difficulties that could result from an over-reliance on carers. They challenged the assertion that palliative care staff should rely on carers to meet all their communication needs: “I suppose I've learnt in learning disability, so I would go to the patient first, as I would for every patient. I'd read the notes or whatever, but I'd try and establish for myself what I could, or try and communicate” (Focus group 3; R2: 641–4).
Consequences of suboptimal therapeutic relationships
It appeared that the quality of care provided to the patient was affected in situations where palliative care staff failed to form authentic relationships with people with intellectual disabilities. Situations arose where there was a less than ideal assessment and management of symptoms or where the carer acted as a gatekeeper and assumed sole responsibility for information provision and decision-making. These challenges are illustrated in the following excerpt where participants spoke of a situation where they had suspected that the patient with intellectual disability had been experiencing total pain but where the patient's family had not wanted staff to explore the issue:R4: I think sometimes for somebody in a family in the general public, there are more inklings that they have an idea. You get more openings, you know, asking more questions. This lady didn't ask questions, you just had a feeling yourself…
R2: … If say, you have somebody normally, say in the community, and if there is collusion, but if the patient keeps asking questions, then you feel that it's right [to answer the person's questions]. But for this lady, she didn't do any of that, you know.
R4: We don't have the right then, to go in. And she mightn't be able to understand it. And it might be that the family were right, that they knew her better.
(Focus group 2; R2 & R4: 234–6 & 251–6)
It was clear from the discussions that carers felt they were acting in the best interests of the person when they advised palliative care staff that discussion of difficult subjects should be avoided, but palliative care staff admitted to having concern whether carers were always correct in their judgement. However, they did not feel that they knew the patient well enough or had sufficient expertise to challenge those decisions. This dilemma was exemplified by the comment from a nurse that “If you had a bit more of an understanding, you'd be a bit more… you'd know more of what you were talking about, and then be able to advise them a bit more”. She acknowledged that staff often feel that it is appropriate to challenge collusion but that this was less likely to happen when dealing with a person with intellectual disability: “I know we do it with other members of the community, but it's possibly different because you can sit and chat with them, and find out where they are, but... you still don't know [the person with intellectual disability]” (Focus group 2; R5: 684–6).
Discussion
Saunders emphasised the importance of relationship as demonstrated through close engagement with the individual and family.15 ‘You are missing something, as well as the patient missing something,’ Saunders said, ‘unless you come not merely in a professional role but in a role of one human being meeting another.’16 In the Askelepian approach to healing, the caregiver facilitates healing by providing a secure environment grounded in a sense of connectedness.17 The empathic understanding that arises from a strong therapeutic relationship is fundamental to the provision of palliative care and it is essential, therefore, that palliative care professionals have the skills and knowledge to establish such relationships with people with intellectual disabilities.
The nature of the relationship between the nurse and patient has been most commonly studied in the palliative care setting, but it is accepted that a number of factors play an important role in determining the quality of any patient-carer relationship. These include the carer ‘knowing’ the patient, the carer's commitment to the patient's good, and the patient's trust in that commitment.18 ,19 Although all domains are important, particularly high value is placed on ‘knowing’ the patient because knowing a patient allows carers to more genuinely understand a patient and their world as if they were experiencing it. It can be argued that it is only when the carer understands the person's needs that care can be provided that meets the particular needs of the individual patient.
Luker et al20 observed that the ability of a carer to get to know a patient is affected by the success of communications, the time spent with the patient and the degree to which continuity of care is ensured. It became apparent from the focus groups that palliative care staff identified problems in these areas when providing care to people with intellectual disabilities. They found communication to be both difficult and different and described how people with intellectual disabilities required more continuity of care than work practice allowed. The importance of continuity of both place and carers was stressed by staff from both specialist palliative care and intellectual disability services. The participants of the focus groups are not alone in highlighting this issue— both researchers and policymakers have brought the issue of continuity of care to the forefront of the health reform agenda in recent years.
A Service Delivery and Organisation scoping programme demonstrated that patients and staff are more satisfied and experience better outcomes when there is continuity of management and relationship.21 The report highlighted that some patient groups are more vulnerable and need additional professional assistance to experience better continuity. In particular, the authors said that help should be provided to navigate systems and that systems should be flexible, easily accessible and adequately resourced. The authors demonstrated that interventions to improve continuity for such populations positively impact on patient satisfaction, functioning and quality of care. Importantly, they noted that improved outcomes were more likely to be seen in vulnerable patients than in other patient groups. The findings of this study prompt us to consider whether people with intellectual disabilities represent a vulnerable group who are less able or unable to negotiate their own continuity in palliative care and whether they need priority or resources focused on them in order to enable them to do so.
Conclusions
All palliative care is ultimately delivered through the common pathway of the patient professional relationship. Therefore, the success of such care is dependent on the quality of that relationship. Staff from both the intellectual disability and specialist palliative care services valued their relationships with service users highly and they described a number of factors that were prerequisite to the development of high-quality relationships. There was striking agreement between intellectual disability and palliative care staff on these factors, and participants spoke of the importance of trust, of continuity of relationship and of knowing the individual. However, palliative care staff admitted to experiencing difficulties when providing care to people with intellectual disabilities, and it appeared that the quality of care given to the patient was affected in situations where the staff failed to form authentic relationships with people with intellectual disabilities.
This study adds to our understanding of the processes of delivery of care to people with intellectual disabilities, and the description of areas where palliative care staff experience difficulties provides us with valuable opportunities to develop strategies to improve the quality of care that is provided to people with intellectual disabilities. Previous work has shown that palliative care staff lack confidence in their skills and abilities to care for people with intellectual disabilities. There is a need to remedy these deficiencies and to identify ways in which professionals can better build trust and communicate with people with intellectual disabilities. There is also a need to improve continuity of care by strengthening discrete elements in the care pathway (such as the interface between palliative care and intellectual disability services), as well as by supporting aspects that promote authentic patient–professional relationships.
The challenges inherent in the development of practical models and methods to improve the nature of therapeutic relationships between palliative care staff and people with intellectual disabilities reveal the difficult task of evaluating and improving complex interventions in general.22 However, such challenges should not act as obstacles to progress, and recent initiatives such as the MORECare Statement on good practice in end-of-life care intervention studies provide useful guidance to work in this area.23 The urgent need for further dialogue and engagement between the palliative care and intellectual disability sectors is clear so that we can continue to advance understanding and improve the quality of care we provide for this population.
Footnotes
Funding This work was supported by a Research Fellowship from the Health Research Board, Ireland (grant number HSR 2005/09).
Competing interests None.
Ethics approval St Francis Hospice, Dublin and St Michael's House, Dublin.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Ethical approval for the use of the data was obtained only in relation to this study. We do not have permission to share the data more widely.