Module 3: Supporting staff

3.3  Hospital, rehabilitation and care staff

Some of the issues for staff working in hospitals or specialist neuro-rehab settings are similar to those facing hospice staff. They will need some of the same support, especially if they are directly involved in providing end-of-life care. However, there are some differences in the challenges they face.

  • Staff who care for severely brain injured patients once they have stabilised but while they are still in hospital may see discharge to a care home or rehab centre as the natural next step. They may not have thought a great deal about what happens after that. Staff in high dependency units, for example, may not be highly trained in relation to PDoC and may be unfamiliar with the need to make best interests decisions at every point of the patient’s pathway.
  • Although familiar with best interests decision-making about ventilation or CPR some staff may be less familiar with making robust decisions about continuing or discontinuing clinically assisted nutrition and hydration and leave that particular treatment out of best interests assessments all together. In ICU, for example, about a third of patients die following decisions to discontinue life-sustaining treatment, but that often involves stopping interventions such as mechanical ventilation.
  • Staff in neuro-rehab settings face a different set of challenges. They are more familiar with the PDoC condition (than most hospital staff) but may be less familiar (than hospice staff) with palliative care and supporting dying patients and their families.
  • In medium to long-term settings staff may also have developed deep attachments to the patient over the months, or years, that they’ve been working with them. They have formed a community around the patient and may even feels like part of ther patient’s family, and can experience residents’ deaths as a personal loss.

Healthcare staff in these settings may also be very focused on keeping hope for recovery alive and less familiar with orientating towards the hope for a ‘good death’. They are orientated to helping patients survive and/or rehabilitate. It can be extremely challenging, therefore, to accept that a particular patient is highly unlikely to make any meaningful progress or adaptation (‘meaningful’ to the patient) given more time (or rehab opportunities).

Allowing a patient to die is also extremely challenging when a carer has been focussed on keeping them comfortable or making sure they live as well as they can: ensuring they are washed, gently moved, chatted too, and dressed well, taken out into the garden, or involved in events such as music or outings.

Some patients may also trigger strong emotions. Healthcare professionals told us how hard is was for them in relation to particular individuals: a young man in PDoC after trying to take his own life may remind someone of their own son, for example, or a staff member may find it almost unbearable to care for a woman severely brain injured after complications in childbirth and who has a new born baby. Staff may share cultural backgrounds or religious faiths with a patient  and the bond and identification with particular families can also generate intense emotions.

In addition, staff may feel more, or less, able to understand a particular patient’s values and beliefs, and how these are being used to inform a best interests decision. It can, for example, be hard to accept that, in a situation of some uncertainty about the future, an individual might not have wanted to risk being kept alive. Being kept alive can become a risk rather than an opportunity to some patients when even the realistic ‘best case’ scenario would not restore a quality of life acceptable to them. (For further discussion about these issues, see our course on Law and Ethics).

Some questions for you

What might be the overlaps or differences between the feelings of rehabilitation and hospital staff and those of hospice staff?

What do you think are the key issues for staff in rehabilitation and long-term care settings?

 We identified five key themes from the interviews we did. Make a note of some of your ideas. How many issues can you think of?

Now listen to the presentation (7 minutes) from Jenny Kitzinger below and hear what our interviewees said. Compare this to what you thought might be an issue.

You can make yourself a cup of tea while listening or at least stretch and move around  for a moment. Alternatively, if you prefer just to see the text of the presentation then click on ‘Show Text’ option underneath.

Show text version

Challenges for staff in rehabilitation settings

Presentation by Prof Jenny Kitzinger, Coma and Disorders of Consciousness Research Centre, Cardiff University

 Read this if you prefer reading to listening to the presentation; it is not word-for-word identical but provides the key points.

This presentation explores the challenges around end-of-life care and decisions about feeding tubes in rehabilitation and long-term care settings, We spoke to a wide range of staff within these settings and here we summarise some of the issues they raised.

[1] Challenge to professional role: For some staff making ‘best interests’ decision, including about the continuation or discontinuation of life-sustaining treatment, completely fits with their professional identity and is core to what they do. For others, however, it can feel novel or very challenging and there can be a stark disconnect between the goals they have for the patient and any decision which allows the patient to die. A decision to withdraw a feeding tube in particular may challenge your own values system and it may be disruptive to your professional identity or sense of your own role in relation to the people in your care. Some staff who are very committed to rehabilitation, for example, find it difficult to ‘give up hope’ for any patient. They may also feel de-skilled, and even rejected and threatened, by the suggestion that all the input they’ve provided has been insufficient to create a quality of life that would be acceptable to the patient themselves. Even, perhaps especially, when staff believe the decision to discontinue treatment is 100% right for this particular patient – and is the correct outcome of the ‘best interests’ discussions – the decision can leave them feeling professionally undermined.

It can lead staff to question their role and may make them demoralised or uncertain about what they are doing in relation to other patients with similar conditions: “The problem is once you ask the questions – ‘is this right?’ for this patient – you start asking the question for them all”. For some patients the answer to that question may be clear – and then staff can be reassured that they are providing the right care (whether that involves continuing or discontinuing). For other patients the way forward may be more uncertain or the right decision may be hard to enact and this can be very hard to deal with.

[2] Distrust of the diagnosis or prognosis: There are particular issues for staff with very little training about Prolonged Disorders of Consciousness – who may distrust the diagnosis and prognosis provided by expert assessments. Such staff are often excluded from in-depth discussion of these issues and may struggle to understand the difference between ‘wakefulness’ and ‘awareness’ or not know how to interpret eye-tracking or movements. They may have become convinced over the years that a patient – even one assessed by experts as being in a vegetative state – responds to, and has a relationship with, them personally. Or they may have lingering doubts about whether a patient is actually ‘locked in’.

A carer, for example, emphasises the lack of training or support, and the doubts she was left with about the person’s diagnosis:

“I worked with her [the patient] an hour or two every day and you get to know somebody, you have a connection, a bond with that person.  If I’ve worked with them every day and you (the expert) see them for perhaps half an hour how can you be right over me, even with all your knowledge? I’m on the front line. Maybe she wasn’t minimally aware, maybe she was locked in, maybe she was actually in there the whole time,…I’m not a professor, I’m not a doctor, I’m not a nurse. I’m ‘just’ a carer , What do I know?… Unless you’ve got a piece of paper nobody listens, you’re the underdog. You’re the ground worker. I had to get out in the end – because you are so unsupported”. 

[3] Feeling implicated in decision to withdraw: Staff may also feel implicated in decisions not to continue or discontinue with life-sustaining treatment – whether as carers whose daily records may be reviewed by an independent expert or as highly trained assessors who conduct tests on the patient’s level of consciousness. One speech and language therapist told us: “I think the feelings of guilt are almost unique in my job…this is new for me as a speech therapist to be part of actually the team that have assessed and that assessment is a major part of why we’re having the discussion about withdrawal. […] I keep telling myself, this isn’t me, this is a whole team approach. But still sometimes there’s that niggling thought of: ‘This is big’, and there’s a sense of responsibility there…

[4] Fear about what the death will be like after CANH-withdrawal: Hospice staff we spoke with were experienced in palliative care – and used to seeing patients die (often over several weeks). Staff working in rehabilitation and long-term care, however, may have little experience of witnessing the dying process – and may be particularly concerned about what a long drawn out death following withdrawal of a feeding tube will be like. They may be very distressed at the thought of physical deterioration, especially when they have worked so hard to try to maintain the patient’s physical well-being. Just like family members they may be troubled by questions such ‘what will the patient look like as they die?’ and ‘how long will it take’?

[5] Grief, loss and anger: Staff are also often intensely attached to the person they have cared for (sometimes over many years) and will have their own sadness and distress when a patient dies. This will be true whether the patient dies in spite of ongoing life-sustaining treatment or after such treatment has been withdrawn. Staff miss patients, grieve for them or even feel anger. One occupational therapist, for example, told us about a young woman she had cared for in a rehabilitation centre: ‘I was her treating occupational therapist and worked with her almost daily, and at the end of the six months she hadn’t emerged [from her vegetative state]. And I subsequently found out that she had passed away. And I was surprised that actually the emotion I felt about that was just anger, because I felt I’d put my heart and soul into treating her and then she’d had the audacity to go and die. So, yes, I was angry’.

Summing up

So staff may feel a complex set of inter-related emotions around end-of-life decisions for patients, and around the patient’s death. Decisions to withhold or withdraw life-sustaining treatment may: (1) challenge people’s sense of their professional role; (2) be distrusted by staff who don’t believe the expert assessments, or have not been part of best interests discussion; (3) staff may feel guilty or responsible for decision to withdraw (4) and often fear what the death will be like and (5) complex feelings around bereavement are also common – including emotions of grief, loss or anger.

Now read on to reflect on what might help staff faced with these challenges, questions and feelings.

Did the issues raised by staff fit with what you expected? What sort of training and support needs do you think are highlighted by the issues identified in the presentation above? Were you surprised by any of the different perspectives from staff in hospices compared to staff in rehabilitation settings? Some of the differences perhaps highlight the importance of staff working in different settings to support one another.

Revisit and reflect on one quotes from a care assistant

Re-visit the comment below from a care assistant (discussed in the powerpoint presentation above):

“I worked with her [the patient] an hour or two every day and you get to know somebody, you have a connection, a bond with that person.  If I’ve worked with them every day and you (the expert) see them for perhaps half an hour how can you be right over me, even with all your knowledge? I’m on the front line. Maybe she wasn’t minimally aware, maybe she was locked in, maybe she was actually in there the whole time,…

I’m not a professor, I’m not a doctor, I’m not a nurse. I’m ‘just’ a carer … Unless you’ve got a piece of paper nobody listens, you’re the underdog. You’re the ground worker. I had to get out in the end – because you are so unsupported” 

What does this comments tell you about the importance of listening to the observations, questions and concerns of everyone involved and the need for training, support and collegiality? Write some reflections in your learning diary.

Note 1: It’s not just health care staff who may be affected by decisions around life-sustaining treatment for the people they work around. The needs of staff employed in rehab or long-term care settings to provide cooking, cleaning, maintenance and administration should be considered too.  Dr Julie Latchem-Hastings’s PhD work highlights how ‘hotel/facilities staff’  can become very involved with patients/residents. A housekeeper, for example, said she felt committed to come into work every day because she had to sing to a particular minimally conscious resident as she cleaned his room. These staff should be offered training to understand what is going on around life-sustaining treatment decisions and their attachment to residents be acknowledged too.

Note 2: Sometimes a decision about treatment may be very finely balanced (or the subject of dispute) and may end up being referred to court. Whatever the judge decides some staff or family members may remain troubled about which decision really was in the patient’s best interests – to continue CAHN, or to stop. Sometimes it can help to read an actual published judgment about the case to see a summary of the evidence considered and the reasoning behind the best interests decision that was reached. You can find published judgments on: https://www.bailii.org.  If you want to watch a court hearing you can find help to do so at: www.OpenJusticeCOP.org.uk

Finally it is worth noting how pleased families could be when staff did feel equipped (clinically and emotionally) to support end-of-life care in the long term placement. Listen to one woman describe how everyone (including pharmacist assistant, porters and nurse) were able to show their support for her dying aunt, and for the family.