End-of-Life Care

UNIT 3 –  SUPPORTING STAFF

LEARNING OUTCOMES

This unit will enable you to:

  • appreciate additional training needs that staff may have around caring for patients in Prolonged Disorders of Consciousness in relation to the withdrawal of Clinically Assisted Nutrition and Hydration
  • reflect on the diverse personal concerns staff may experience
  • plan how to seek out appropriate education and support for yourself or others.

🕒 Time required: 20  mins

Staff training and support needs

Staff working in hospices and in rehabilitation/care settings have some specific training needs around looking after patients in Prolonged Disorders of Consciousness, especially when it comes to  the withdrawal of Clinically Assisted Nutrition and Hydration.

Some of these needs are as simple as knowing that there are special clinical guidelines for this patient group because they can be quite different from other dying patients. Whether the patient’s actual end-of-life care is provided in hospice, hospitals or specialist neuro-rehab settings (or in another setting identified as appropriate in any particular case) it is essential that the Royal College of Physicians guidelines are considered (see ‘Resources’) and that all staff involved are properly prepared and supported.

Other needs include addressing how staff can find they feel in this situation. Challenges for staff can include being distressed by the decision to withdraw life-sustaining treatment,  having questions about the process of the decision or about the patient’s condition, and being disconcerted by how the patients appears (eg if they appear very physically healthy or even ‘awake’).

They may also have concerns about how to support the family, feel uncertain about their competence to provide good care, feel undermined in their professional identity or simply be unprepared for some of their own reactions.

Staff in different settings

This  unit starts by exploring issues primarily raised by hospice staff. It then goes on to explore issues for staff in rehabilitation and longer-term care settings. Staff in each type of setting, however, will benefit from reviewing the issues faced by their colleagues working in the other setting. Understanding the different knowledge-bases, cultures and perspectives of diverse staff  helps ensure good mutual support, skill-sharing, reflective practice and high quality patient hand-overs.

We hope this learning will also be useful for staff who have a lot of experience of caring for such patients but very little formal training (e.g. care assistant), or staff who work in a different setting entirely, such as supporting a patient being cared for in their family home or working in more acute settings with patients earlier on after their injury.

SECTION 1: HOSPICE STAFF 

1(a) Challenges for hospice staff

For most hospice staff, this will be the first time they have cared for a patient in a Prolonged Disorder of Consciousness. This is because PDoC patients are relatively rare (compared to people dying with cancer for example) and because (until recently) many such patients have had ongoing life-sustaining treatment by default. Dr Jo Hayes, consultant in palliative medicine, emphasises the need for preparation and education in hospices.

Show text version

“From the point of view of hospices and end-of-life care, I think most people would see this as part of their role and accept that there may well be increased numbers of patients dying in this sort of way in the future. I guess it’s for those experts who are referring into us not to assume that because we do end-of-life care a lot that we know exactly how to deal with patients like this and to understand that we would have training and education needs and also that it would be helpful for us to talk things through with those who’ve got a bit more experience beforehand.”

The ‘look’ of PDoC patients:  The need for education can be clear from the first moment a PDoC patient enters a hospice – with staff feeling unprepared for what the patient looks like. Take a moment to imagine what it might be like for staff encountering this type of patient for the first time. What might surprise them? Then listen to the audio clips to hear a nurse and a doctor reflecting on their first experiences.

Text version (Nurse)

“It just said ‘PVS’ on the referral form. Even though I’ve been qualified for a long time my experience of that is not there really and I thought people would be comatosed, not responding and just being in the bed basically. And we [the team] were most surprised when our lady came in to the ward, because she came in via wheel chair [but] we’d got the patslide out for her to transfer her from the stretcher over to the bed – which wasn’t needed. So that was a surprise, no one expected that. And then one of the other nurses said she was disturbed by our lady opening her eyes and following her. So that was difficult because we didn’t know what to expect, the eyes following you and it was most strange. When she came into the ward I did think, ‘well maybe we have got the wrong patient, someone’s given us the wrong patient’.”

Text version (Doctor)

“My first experience looking after a patient in a permanent vegetative state was a couple of months ago, as I just started my role as a registrar at the hospice. I’d never looked after and cared for a patient like this before.So it was all very new, and I wasn’t prepared for it. Initially when she came in, she was dressed very well, she was in a motorised wheelchair with her family. And I just remember thinking that was very strange. She was coming in for end-of-life care and for withdrawal of artificial nutrition and hydration, but she’d come in in her wheelchair. And the two things didn’t really fit. And I think as well, talking to colleagues, people think because in hospices we see patients who are terminally unwell and at the end stage of life that that is what we do, that we see dying patients. But I think this was just very, very different.”

People in vegetative or minimally conscious states don’t fit with media stereotypes of a typical ‘coma’ patient. Vegetative patients, for example, have sleep-wake cycles and may move and make sounds. The image below (created using shadow puppetry) shows a far more realistic image than is often displayed in the media. Note, for example, how the patient’s eyes are open and how they have been positioned in the wheelchair.

Image by Karin Andrews Jashapara

 

In addition to looking different than expected, in what way do you think end-of-life care for a PDoC patient can feel very different from caring for other patients? Note down the other issues you think might arise. Then continue working your way through the e-learning and watch the film clips from hospice staff. As you listen reflect on how the different roles staff have, as well as their knowledge of disorders of consciousness, and their own values, might influence what issues they highlight.

Patients’ responses and reflexes: Patients in prolonged disorders of consciousness [PDoC] are either totally unaware, or only have minimal and fragmented awareness for short periods of time. However, they have sleep-wake cycles and they may make movements and sounds. They may turn their heads, for example, or close their fingers over an object or someone else’s hand (For full information see our course on PDoC). Staff with specialist training working in rehabilitation settings are used to making sense of such behaviours and know how to distinguish a genuine response from a reflex. They also know how to conduct detailed tests to interpret patterns of behaviour. Even they, however, can react intuitively to what a patients does; after all, in most of our lives, if a person turns their head and appears to look at us – that is indeed, a conscious action and social connection. For staff without training this can be even more unsettling and anyone unfamiliar with PDoC patients and the tests used to assess where the patient is along the vegetative-minimally conscious continuum may be disturbed by what they witness.  If a patient moves, make sounds or appears to look at staff then this may make them question a diagnosis of ‘vegetative state’. Meg Bluto talks about her concerns about a patient she cared for.

Show text version

“You’re being told that the patient is not feeling pain and the patient is not aware […] We knew the history of it had been a prolonged period for the patient and the family. But it seemed as though the patient was responding. […] it took me off guard, because I’m thinking, ‘I’m not giving food and sustenance to this person’, yet when I speak her eyes would move to where I was. It seemed as though there was response to when her family spoke. So it just, for me, it didn’t seem right. Now saying that, I would not want to be sustained in that manner, so there was mixed emotions for me too. Thinking, ‘I get it, I get where they’re coming from. Because I wouldn’t want to be kept alive just by feeds, if I was in a vegetative state’. But I didn’t like being on the side of being the nurse. It didn’t feel right because I didn’t have enough knowledge. I  had not educated myself well enough to know that those could be – afterward I found out – those could just be the reflexes. So it seemed as though… – it didn’t seem right at the time.”

Difficulty understanding how the decision to withdraw the feeding tube was reached: Hospice staff are often only involved in caring for a PDoC patient after the decision to stop all life-sustaining interventions has already been made. Hospice staff may have little idea about the efforts made to establish what the patient themselves would want in his or her situation and they will not have been involved in efforts to maximise the patient’s chances of recovering to a quality of life that he or she would value. So, the patient’s family, and the staff involved in their long-term care, will have been on a journey of learning about the patient’s likely level of recover and the patient’s wishes and values – a journey which hospice staff are usually not involved in. Hospice staff may also have had little training or experience of decision-making for patients who are not ‘terminally ill’ – patients who could be kept alive indefinitely with a feeding tube. For some staff this can feel quite disturbing – especially if the patient does show some signs of consciousness. Staff who’d like further information about such issues may find it useful to look at the law, ethics and decision-making modules at cdoctraining.org.uk. It will also be useful to consult the professional guidance from the British Medical Association and Royal College of Physicians, endorsed by the General Medical Council. This guidance is available at: www.bma.org.uk/advice/employment/ethics/mental-capacity/clinically-assisted-nutrition-and-hydration/clinically-assisted-nutrition-and-hydration-canh-guidance. The guidance (published in 2018) gives a detailed description of the process followed for ‘decisions to start, re-start, continue, or stop CANH for adults in England and Wales who lack the capacity to make the decision for themselves’.

Note: If you feel that the treatment of a patient isn’t right then seek out further information to check your understanding of the situation. Reflect on your concerns with other members of the multi-disciplinary team or with those responsible for the decision. If you find that treatment is in accordance with law and professional guidelines but still object, you may wish to declare a conscientious objection. (This is explained in our course: “Life-sustaining Treatment Decisions”).

Concerns about pain management: Staff worry about whether the patient is experiencing hunger (e.g. if their stomach rumbles) or is in pain and unable to express this. The National Clinical Guidelines on PDoC have clear suggestions for how to manage such concerns (see unit 1 of this module). But, even if the Guidelines are followed, it can still be difficult for the individual nurse or doctor or other member of staff caring for the patient.

Show text version

“You wanted to assess it, and you wanted to see if she was in pain, […] you want to be sure they’re not in pain, especially in a palliative care setting, when someone’s been without fluids or without food for several days. But it always made me think when I’d see people writing ‘Not in discomfort’ about what that meant and how we could be sure. And just the uncertainty of that. […] With her, there was no communication. She wouldn’t be able to grimace or look in pain. There would be no clear way of knowing. […] I guess checking the pulse and things is a good sign. If their pulse is running faster they can be in pain. So things like that are important. But yeah, it’s just very different. I guess there is an element of guilt as well. […] Guilt in maybe not being sure that she’s not in pain, and hundred percent knowing that she’s not in pain. And then you feel guilty about that. I think as a doctor, no matter what level you are. […].  nurses and other healthcare professional do ask you for sort of reassurance as well. And that’s one thing I did feel with this patient, was they’d ask me about something, ‘Oh, her eyes are opening a bit more, is that normal? What does that mean?’ And I just felt that I wasn’t very equipped to answer those questions. And I felt like I needed to reassure them, but in my heart-of-heart I couldn’t say, with hundred percent, although I could say, ‘It’s probably a reflex,’ or, ‘It’s probably this,’ I didn’t feel confident that I knew, ‘oh, she’s not in pain’.”

Concerns for the family (and links to own experience): In addition to worrying about providing the right care for patients, staff may also be concerned for the families. They may have no history with the family when a PDoC patient comes in for end-of-life care and they are often unfamiliar with the journey these families have been on, or how families might feel or behave at the bedside.

One nurse, Meg Bluto, also expressed concern for how family members might live with the knowledge that they had supported decisions not to continue with life-sustaining treatment. This concern was linked to her own personal experience.

Show text version

“I just maybe thought about it in light of me. If that had been my mother, I would have respected her wishes but I would have always had this niggling [doubt]… And I know I would because I decided [for my own mother] ‘Look […] she’s not coming (back) we need to just take her home and love her through this, and just do it’. But I had those doubts after the fact. Did I not try hard enough? Did I give up, you know? So sometimes, even though you know you’ve made the right decision, it’s not always easy to live with. You can make what you feel 100% is the right decision – it doesn’t mean it’s easy to live with.”

When a patient has been in a prolonged disorder of consciousness for many years, this can pose quite distinctive challenges for families. Some feelings can be very different from those experienced around ‘normal dying’. You can learn more about some of these distinctive issues in the next unit.

Difficulties understanding family reactions. Hospice staff may have no previous experience of working with families of PDoC patients and may find it hard to understand some family reactions. For example, some family members may talk to their relative while they are dying and want to be with them all the time, but others may appear quite detached from the patient and talk to one another next to their relative’s bed as if their relative is not in the room. This dis-engagement from ‘the body in the bed’ can be an active affirmation that their relative is completely unconscious and ‘long gone’ – but can be disconcerting or even shocking for staff who are used to families  being with their dying loved ones in a particular way. Another issue hospice staff can find challenging is how to negotiate with the family members’ expertise in providing physical care or interpreting the behaviours of their relative. Families have often built up years of experience and skills caring for their relative in PDoC and have had to be hyper-vigilant about their day-to-day care. They may know more about PDoC than the hospice staff as well as understanding more about this individual patient (e.g. knowing what triggers sweating or changes in breathing). It’s important to listen to family expertise, but not to make them ‘nurse’ the patient or have to monitor medication, when they want to be able to relinquish that role and be ‘just his wife’ or ‘completely his brother’ as they sit at the deathbed. You will find out more about some of these issues in the next unit and hear from family members describing their feelings and experiences.

1(b) Support strategies for hospice staff

Hospice staff can benefit from detailed pre-admission briefing including:

  • information about the best interests decision-making processes that have been followed (such as is provided in this course) – or about the Advance Decision made by the patient if this was the route to withholding/withdrawing treatment
  • descriptions of how patients in Prolonged Disorders of Consciousness may appear (e.g. with open eyes)
  • detailed guidance about the palliative care plan – especially around pain management (See the Guidelines produced by the Royal College of Physicians referenced in unit 2 of this module)
  • access to resources explaining some of the issues faced by families of these patients. Such information is available in unit 4 of this module. There is also lots of information about family experiences in the healthtalk.org resource for families created by the Coma & Disorders of Consciousness Research Centre and available at: http://healthtalk.org/peoples-experiences/nerves-brain/family-experiences-vegetative-and-minimally-conscious-states/death-and-dying

Follow up support can usefully  include opportunities to reflect on their own family experiences of end-of-life decision-making and bereavement alongside safe spaces in which to reflect on their reactions to patients’ deaths and the withdrawal of life-sustaining treatment (including in clinical supervisions and Schwartz Rounds).

 

SECTION 2: STAFF IN REHABILITATION AND LONG-TERM CARE SETTINGS 

2(a) Challenges for staff in neuro-rehabilitation and assessment settings 

Some of the issues for staff working in 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 in neuro-rehab settings are, for example, more familiar with the condition of the patient and may know the patient’s family well but they may be less familiar (than hospice staff) with palliative care and supporting dying patients and their families.
  • They may have a greater understanding (compared to hospice staff) of the journey that has led to life-sustaining treatment being discontinued, but may have also developed deep attachments to the patient over the period they have been working with them and can experience their death as a personal loss.

Rehabilitation staff may also be very focused on keeping hope for recovery alive and less familiar with orientating towards the hope for a ‘good death’.  When you entire working life is focussed on rehabilitation it can be extremely challenging to believe that a patient either can not make any progress with further rehabilitation or would not have wanted to do so.

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

What do you think are the key issues for staff in rehabilitation settings?

 

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

 Now listen to the 7 minute presentation below and see what our interviewees said, and how this compares to what you thought might be an issue.

You can make yourself a cup of tea while listening. Alternatively, if your 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 – Co-director of Coma and Disorders of Consciousness Research Centre, Cardiff University

Script of powerpoint

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 summarises 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 suggestions 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 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.

Raising questions about whether or not life-sustaining interventions are in a patient’s best interests 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 than involved 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 with a vegetative diagnosis – responds to, and has a relationship with, them personally.

[3] Feeling implicated in decision to withdraw: Staff in long-term care settings may also feel implicated in decisions not to continue 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 treatments 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) can 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.

[End of Power-point script]

Ask yourself how the perspectives outlined in the presentation add to, or give a different perspective on, the issues raised by hospice staff? Did it fit with what you expected? Some of the differences perhaps highlight the importance of long-term rehab and care staff working together with hospice staff to support one another and maximise good care. What sort of training and support needs do you think are highlighted by the issues highlighted in the presentation above?

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 do these comments from a (former) care assistant tell you about the importance of listening to the observations, questions and concerns of everyone involved and the need for training, support and collegiality?

Note: 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 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 decision and their attachment to residents be acknowledged too.

 

2(b) Support strategies for staff in rehabilitation and long-term care setting around decisions to withdraw life-sustaining treatment

In addition to the type of support that may help hospice staff (listed in section 1 above), those working in neuro-rehabilitation settings may benefit from:

  • training for all staff to help them understand how to interpret behaviours, even if this is not obviously a necessary part of their job description. For example, it may help nursing and care assistants to have an explanation of the differences between ‘wakefulness’ and ‘awareness’ or between reflexes and purposive behaviours and to witness how testing is used to systematically interpret patient’s behaviours.
  • training for all staff about  how decisions are made to ensure person-centred care. This could include discussion of best interests decision-making processes (including what sort of things are known about what the patient would have wanted) and discussion of  Advance Decisions to Refuse Treatment (if the patient had one, or if any staff reflect that they might want one). It can also include explicit information about the difference between making a clinical judgment and making a person-centred best interests decision. (This is addressed in detail in another CDoC-training course on ‘Life-sustaining treatment decisions’)
  • reflection with the team about how best interests are being addressed for this particular patient and for other patients in the rehabilitation or care setting with similar conditions. It can be unsettling for everyone when a decision is made to cease providing life-sustaining treatment for a patient. Staff may have questions about why this happens for one individual and not another in their care or be worried that it raises questions for about other patients or might feel very threatening to their families.
  • reflection on staff’s own professional culture and identities, and how their work is organised. This could include discussion of ‘goal setting’ for patients and staff – and how these goals fit with (or conflict with) best interests decision-making about life-sustaining treatment.

The suggestions above all focus on support for staff to navigate decision-making about life-sustaining treatment but it is important to also focus on the simple fact that, whatever the circumstances, when a patient dies staff may be losing someone they feel connected to and have put their heart and soul into caring for.

Research in a specialist Regional Hyper-acute Rehabilitation Unit highlighted how some staff (nurses and health care assistants in this case) could be very shocked to hear about a patient’s death – especially if they had not been prepared for it. Comments included: ‘Most of the staff start getting attached, especially the nurses’ side, and when we get this kind of news that she died – what?! It’s a shock.’ and ‘It actually physically made me feel sick the way I was told, the shock, because you become close to these people.’ These quotes come from a study by Longeswaren et al (2018) in the International Journal of Therapy and Rehabilitation. You can read more from this study at www.magonlinelibrary.com/doi/full/10.12968/ijtr.2018.25.11.602. 

We came across similar comments from a wide range of staff. Many were particularly affected by the manner in which they learnt about the patient’s death. It can be very hard on staff if they only hear ‘on the grapevine’ or simply come in one day to find an empty bed.

Staff may also struggle with the intensity of their feelings around a patient’s death. Staff who discussed these issues with us made comments such as ‘Am I allowed to feel this way?’, ‘It’s not like I am family’, ‘I don’t know what to do with my emotions’. They wanted ‘permission’ to be a human being not just a professional and it was also clear that they gained support from talking to each other, including those who had been through the process before and could reflect on some of the complex feelings involved, and how feelings may change over time.

The suggestions below are informed by knowledge gained from the (limited) research literature on rehabilitation staff’s reactions, suggestions from staff who spoke to us while putting together this e-learning, and the extensive research on staff grieving for residents in long-term (non-specialist) care homes.

2(c) Support strategies for staff in rehabilitation setting around the death of residents

Staff information and support needs around death and dying can include:

  • information about what a death might be like following withdrawal of a feeding tube (see next unit for discussion of how such deaths usually appear to be calm and peaceful, but can be difficult to witness)
  • briefings about the palliative care provided, alongside the opportunity to visit the patient in the hospice as appropriate if possible
  • good communication about when a patient is dying/dies – staff should not just suddenly be faced with an empty bed or hear ‘on the grapevine’ about a patient’s death.
  • acknowledgement of their feelings for the patients they have looked after. They will not grieve in the same way as family members or friends of the patient, but this does not mean they’re not entitled to their feelings.
  • it may be important to have some way of marking a death within the organisations – and if staff are invited to the funeral they should be able to attend as appropriate. (Families sometimes appreciate a representative from the long-term rehab/care unit going along or wish to invite a particular staff member).
  • staff should have opportunities to debrief – formal supervisions might, or might not, be the best place for this,  staff peer-support and mentoring may be useful instead/too. 
  • key workers involved in a series of cases leading to withdrawal of life-sustaining treatment may face particular challenges – with the danger that they end up feeling burnt-out or ‘weighed down’ by the emotional challenges of this journey. Strategies to address this may include careful supervisory support, delegating or skill-sharing with other team members or mentoring others to take on the role.

Before ending this unit listen to two staff members reflecting on the death of a patient and their own role. First, Laura Davies, a nurse in a specialist rehab setting. Laura feels strongly that it is a privilege to care for dying patients and to help aim for the best possible death – she very much would like to provide that care in the rehabilitation setting which has been the patient’s ‘home’ for many months and where staff know the patient and their family well, and can use all their neuro-specialist expertise alongside specialist palliative care input.

Show text version

“If it’s to do with working towards a good death, you’ve only got one chance to be a good nurse really, haven’t you?  In a sense, to really make a difference for the families to look back and think, ‘well, it was a hard time but we were really well supported, and I couldn’t have wanted it to go any differently’.  That’s what you’re aiming for, isn’t it?  So that people have no regrets and they don’t think ‘oh god, it was the right thing to do but it looked so painful and everything”’  I want them to look back and think, ‘we did the right thing. It was the hardest journey of my life but it was what was meant to be’ and then hopefully the family would just reflect on the happier times and the happiest parts of that patient’s life.  But also know that they did have a good death and they got what they wanted. So that’s what I think we all ought to be working towards now, isn’t it?  If that’s the right thing to do, that’s what we should be doing.  We shouldn’t be inflicting painful or life prolonging treatments if it’s not in the patient’s best wishes, you know, […not] what the patient would have wanted”

Listen to Esyllt Glyn Jones, a speech and language therapist, talk about visiting a young man with catastrophic brain injuries who had moved from the rehabilitation centre (where Esyllt worked) to the hospice. Esyllt went along to support the family – but was grateful to be able to witness how this young man was being looked after too.

Show text version

“We offered just to be there with the family, to chat, to  see how they were, but obviously […] in the process of supporting the family, we were witnessing the person, you know, slowly fading away really. And that was hard. That was really hard to see. But I think the good bit about it really was that we knew that the family could be there 24/7, we knew that the nurses looking after him were really caring and making sure that he wasn’t in any discomfort, or showing any signs of discomfort. And I think that felt quite comfortable for us as a team. Whereas I think the other option was for that person to have passed away in the neuro rehab unit, where the environment is not really set up and we don’t have medical cover all the time. Our staff are not trained in palliative care. So there was almost a feeling of ‘the person’s in the right place’, you know.”

Reflection point for staff in all settings (hospices, rehab and long-term care)

  • What might you be able to do to look after yourself or support colleagues when Clinically Assisted Nutrition and Hydration is withdrawn from a patient in a Prolonged Disorder of Consciousness? How can you ensure good communication and be sure the whole team has access to opportunities for training and reflection?
  • If you are a senior manager what can you do? How could you deliver on some of the suggestions listed above in section 1(b) and 2(b)? What challenges might you face? Are the other strategies you can think of to help support staff?
  • Think about different specialties, training and roles:
    • how are goals set for staff and how might this exacerbate tensions or reconcile their professional identities with best interests decision-making about life-sustaining treatment?
    • how might staff feel differently depending on their contact with the patient. For example, are they someone who cleans the patient’s room, or turns them, administers medical treatment, or does physiotherapy with them? How might these different ways of having contact with the patient influence how they feel now?
    • how would you tailor the support to different staff, including those with least training about the issues?

Comments please –

What have you learned from this unit? What would you add? Has it provoked some memories or questions you would like to share?

Please make comments below to share with other people doing this course.

 

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