Self-assessments of palliative care
The results of the self-assessments including the medical file review of non-suddenly deceased people with ID (n = 100) showed that palliative care in the ten ID care services was not being provided entirely according to the standards of the Netherlands Quality Framework for Palliative Care [
25]. The results of the self-assessments for each core element of palliative care are described in more detail below.
Identification
To identify people with ID in need of palliative care, professionals in nine out of the ten participating ID care services used the ‘surprise question’: “Would you be surprised if the patient died within the next year?”. If the answer is no, the patient can be identified as “in need for palliative care”. However, in most ID care services it remained unclear when or by whom the surprise question is answered or how palliative care needs were identified:
“The question: ‘is a patient still doing well, or are they at the terminal stage?’ is asked when a patient feels poorly and when there are concerns. These concerns are shared with colleagues and the patient’s family. If necessary, the GP and the behavioural expert are called in. (…) These actions are being initiated, but no clear transition is made with regard to the palliative phase. Switching is more frequent when the terminal phase presents itself.” – ID care service no. 7.
Shared decision-making
Shared decision-making in all participating ID care services took place in regular multidisciplinary team meetings in which the care plan of the individual with ID is discussed. These meetings were held with the professionals involved, relatives and, if possible, the person with ID. At most of the ID care services, decisions were recorded in the individual care plans. One service used a separate ‘palliative file’ for people with ID who receive palliative care. If necessary, decisions regarding people with ID in the palliative phase were reviewed more frequently and changed if necessary:
“In any case, an evaluation of the care plan takes place once a year with the personal supervisor [daily care professional], a relative and, if possible, the client is also present. Decisions are recorded in the electronic patient file, in the evaluation of the care plan or as separate reports of conversations and agreements. If necessary, there is more frequent contact about decisions, progress, goals and expectations.” – ID care service no. 5.
Advance care planning (ACP)
Eight of the ten services mentioned that ACP conversations with people with ID and/or relatives took place. Some ID care services used a workbook on end-of-life care for people with ID to discuss wishes and needs for future care. ACP discussions with relatives focused on quality of life and medical end-of-life decisions:
“ACP discussions often take place with legal representatives. The main focus is on comfort and quality of life. Decisions are often made about non-resuscitation, whether or not to be sent to hospital or IC, and decisions regarding COVID-19 are also being made at present.”– ID care service no. 1.
Dimensions of palliative care
Multidisciplinary teams including various professionals were involved in providing physical, psychological, social, and spiritual care. At all participating ID care services, a physician specializing in care for people with ID provided physical care. In addition, social workers and behavioural experts were involved in psychological and social care. Eight of ten services employed a spiritual counselor to provide spiritual care for people with ID in the palliative phase:
“Support is given by the spiritual counselor at the request of the team that supports the person. In addition, as part of our care we counsel clients closely and in this way we also try to bring the psychological dimension up for discussion. The behavioural expert also has a role in this phase of life.” – ID care service no. 6.
Expertise
There were limited training opportunities in palliative care for professionals in the participating ID care services: only one service offered standard training in palliative care for all professionals. To disseminate knowledge, nurses specializing in palliative care were employed at six of the ten services as palliative care consultants. Eight of the ten ID care services listed no requirements on the necessary skills and specific expertise in palliative care of ID care professionals:
“Primary care is aimed at the well-being of the patient in various respects. Different care requirements have been established for the various patient groups. To my knowledge, there are no requirements for palliative care.” – ID care service no. 8.
Coordination and continuity
In all but one of the participating ID care services, care for individuals with ID was coordinated by a professional – often a social worker or nurse – involved in the daily care of the individual with ID. This professional also had a central role in the coordination of palliative care:
“Every resident has a coordinating daily care professional who acts as a case manager and in that role is the central figure for the patient, their representatives and for employees. This professional is responsible for implementing the individual care plans of patients in a residential facility and is therefore also the primary contact person.” – ID care service no. 4.
Cooperation with other organisations
All participating ID care services were part of a regional palliative care network, which is a formal and sustainable partnership of independent organisations (e.g. nursing homes, psychiatry, hospitals, hospices and community care) that are involved in palliative care in a specific region. However, collaboration within the palliative care network was often incidental. Only half of the services made agreements or formulated protocols with other organisations in palliative care:
“[Name ID care service] is part of the regional palliative care network. There are no binding agreements with regard to palliative care within the network for collaboration regarding the patient, or transfer and referral procedures.” – ID care service no. 10.
Individual care plan
All participating ID care services had an individual care plan for the last ten patients who died non-suddenly. Individual care plans were regularly reviewed in the multidisciplinary team meetings. It was not always explicitly stated in the care plan that a client was in the palliative phase. The individual care plans did, however, report on medical end-of-life decisions, such as a resuscitation policy or wishes for the admission to the hospital:
“Medical policy agreements are recorded in the care plan; they are sometimes reconsidered in the palliative phase and sometimes again in the palliative terminal phase.” – ID care service no. 6.
Support for professionals
Nine of the ten ID care services had a formal policy on ‘support for professionals’ to enable reflection on their attitude and the impact of providing palliative care, for example by providing intervision sessions for peers and supervisors. At all of the ID care services, moral deliberation sessions were offered to enable professionals to discuss personal or professional dilemmas or issues and to express emotions:
“’Care for the carers’ is offered and encouraged in our organisation. There are also opportunities for intervision and supervision for professionals. A meeting with the spiritual caregiver and/or a confidential advisor is also possible. The intention is that every team has a moral deliberation session at least once a year.” – ID care service no. 4.
Questionnaire on palliative care
The questionnaire was returned by 424 professionals from the ten participating ID care services (response rate 64%), of whom 299 filled in the questionnaire completely. This involved between 14 and 49 professionals at each ID care service. Of the respondents, 58% (n = 223) had supported at least one person with ID in need for palliative care during the past year. Professionals who fully completed the questionnaire reported more often that they were involved in the provision of palliative care for a person with ID during the past year than professionals who did not fully complete the questionnaire (X
2 [
2] = 13.23, p < 0.001).
Background characteristics of participants are listed in Table
2. Most respondents were female (90%), and provided daily care for people with ID (68%). Of the professionals who provided daily care (n = 222), 52% was trained as a social worker and 48% as a nurse. Professionals reported working an average of 26 h per week (minimum 4 h; maximum 40 h). The majority (72%) reported that they had not received previous training in palliative care, and 74% reported a need for training (or more training) in palliative care. Participants who reported receiving previous training indicated that they had attended conferences or workshops on palliative care or had participated in training focusing on ageing people with ID and providing grief support for people with ID.
Table 2
Background characteristics of professionals
Age (n = 298)
| | |
< 30 years | 65 | 22 |
30–49 years | 115 | 38 |
≥ 50 years | 118 | 40 |
Sex (n = 292)
| | |
Female | 264 | 90 |
Male | 25 | 9 |
Prefer not to say | 3 | 1 |
Profession (n = 328)*
| | |
Daily care staff | 222 | 68 |
Social worker (52%) | | |
Nurse (48%) | | |
Nursing staff | 29 | 8 |
Manager | 20 | 6 |
Behavioural expert (e.g. psychologist) | 12 | 4 |
Allied health professional (e.g. physiotherapist, speech therapist, dietician) | 6 | 2 |
Physician | 5 | 2 |
Specialised physician for people with ID (n = 2) | | |
General practitioner (n = 3) | | |
Spiritual counselor (pastor) | 4 | 1 |
Palliative care specialist | 3 | 1 |
Other (e.g. student, assistant, night care worker, trainer, musical therapist) | 27 | 8 |
Work experience in ID care (n = 296)
| | |
< 1 year | 12 | 4 |
1–5 years | 81 | 28 |
5–10 years | 41 | 14 |
10–20 years | 78 | 27 |
> 20 years | 82 | 28 |
Previous training in palliative care (n = 296)
| | |
No | 214 | 72 |
Yes | 82 | 28 |
Need for training (or more training) in palliative care (n = 295)
| | |
No | 77 | 26 |
Yes | 218 | 74 |
Perceived competencies of professionals
Of the participants (n = 302), 9% reported feeling “not competent at all” in providing palliative care, 33% reported feeling “somewhat competent”, 43% reported feeling “reasonably competent” and 15% of professionals reported feeling “largely competent”. The professionals who reported most often that they felt “largely competent” in providing palliative care were palliative care specialists (100%), spiritual counselors (50%), nursing staff (41%), and physicians (40%); none of these professionals reported feeling “not competent at all”. Daily care staff with a background in nursing more often reported feeling “largely competent” (22%) compared to daily care professionals with a background in social work (7%) (p < 0.01).
Table
3 lists specific competencies in palliative care. Participants felt most competent (> 30% “definitely skilled”) in providing physical care, reporting palliative care needs, evaluating provided care, providing care during the last days of life and reflecting on their own attitudes and behaviour. Participants felt least competent (> 15% “probably not skilled”) in proactively discussing wishes and needs for future care with people with ID, discussing moral dilemmas, planning and organising palliative care, and collaborating with other organisations specialised in palliative care.
Table 3
Competencies in palliative care reported by professionals
Identifying palliative care needs | 301 | 11% | 35% | 46% | 8% |
Systematically identifying symptoms, problems and needs | 299 | 13% | 31% | 43% | 13% |
Proactively discussing wishes and needs for future care with people with ID | 299 | 13% | 28% | 43% | 16% |
Proactively discussing wishes and needs for future care with relatives | 302 | 25% | 32% | 33% | 10% |
Involving person with ID and relatives in decisions in palliative care | 300 | 27% | 33% | 34% | 6% |
Discussing moral dilemmas with people with ID and/or relatives | 301 | 17% | 29% | 38% | 16% |
Providing physical care | 301 | 33% | 31% | 28% | 9% |
Dealing with psychological symptoms and problems | 301 | 20% | 42% | 30% | 8% |
Supporting the social wellbeing of people with ID | 300 | 22% | 43% | 29% | 5% |
Supporting the spiritual wellbeing of people with ID | 302 | 12% | 33% | 39% | 15% |
Reporting symptoms, wishes and needs of people with ID | 302 | 38% | 38% | 20% | 4% |
Actively involving relatives in care for people with ID | 299 | 29% | 34% | 28% | 9% |
Collaborating with other professionals in palliative care | 300 | 28% | 37% | 28% | 7% |
Planning and organising palliative care | 303 | 18% | 31% | 33% | 18% |
Collaborating with care organisations specialised in palliative care | 300 | 9% | 28% | 39% | 24% |
Evaluating the provided palliative care | 300 | 32% | 38% | 25% | 5% |
Promoting the importance of palliative care within the organisation | 302 | 23% | 38% | 32% | 7% |
Supporting relatives in their grief | 298 | 17% | 38% | 35% | 10% |
Supporting people with ID in their grief | 301 | 29% | 42% | 24% | 5% |
Supporting professionals who are having a difficult time | 302 | 30% | 37% | 28% | 5% |
Providing care during the last days of life of a person with ID | 302 | 39% | 36% | 20% | 5% |
Reflecting on own attitudes and behaviour | 302 | 33% | 42% | 22% | 3% |
Need for improvement in palliative care
Table
4 shows the needed improvements in palliative care reported by professionals. The top 3 needed improvements were (1) enhancing the expertise of the professionals involved in palliative care, (2) identifying palliative care needs, and (3) improving the quality of palliative care for people with ID and their relatives. These needed improvements were reported by 52%, 42%, and 33% of professionals, respectively. Enhancing the expertise in palliative care was needed according to professionals because team members who provided daily care for the person with ID had limited expertise and experience in this area: “We have a young team, with little experience in palliative care. More knowledge is important to enhance the expertise of the team. Due to this lack of experience, the concept of palliative care is often unclear and the necessity for such care is not properly identified.” - ID care service no. 10.
Table 4
Needed improvements in palliative care reported by professionals (n = 317)
Enhancing the expertise of professionals involved in palliative care | 52% |
Identifying palliative care needs | 42% |
Improving the quality of palliative care for people with ID and their relatives | 33% |
Advance care planning | 21% |
Collaborating with other professionals in palliative care | 21% |
Planning and organising palliative care | 19% |
Collaborating with other care organisations specialised in palliative care | 17% |
Documenting wishes and decisions (and corresponding changes) in the individual care plan | 8% |
Supporting relatives and involving them in palliative care for their loved one | 7% |
Involving people with ID and relatives in decision-making | 5% |
I don’t know | 9% |
Other* | 6% |
None of the above | 4% |
Professionals explained the importance of improving the identification of palliative care needs, including recognizing that the person with ID is in the palliative phase: “This is because timely identification in the organisation does not always happen, but it is important for high-quality palliative care. I think there are many patients who actually receive palliative care, but that concept is not yet used deliberately (nor is it included in the care plan). If the need for such care is identified promptly, we can also involve relatives more effectively and sooner in the process and thus support them better. This also improves the quality of palliative care. At an early stage it is also important to discuss the wishes for future treatments and care with all those involved. That deserves attention.” - ID care service no. 6.
Improving the quality of palliative care for people with ID and their relatives was reported by professionals as needing improvement in relation to the expertise of professionals in palliative care:
“There is still room for improving the quality of care. It would be nice if employees could specialize in this, in teams where the expectation of palliative care is highest, e.g. aging patients. (…) Although I think that every employee should receive training in the basic principles of palliative care.” - ID care service no. 6.