Module 3: Supporting staff

3.2 Hospice staff

Challenges for hospice staff (or anyone who hasn’t had detailed professional training about PDoC)

This section is particularly written for those who may have had little professional training about the specific condition of Prolonged Disorders of Consciousness [PDoC]. However, some of the points discussed can continue to be an issue regardless of knowledge about PDoC. One allied healthcare professional who has worked with a lot of PDoC patients told us: ‘Some unease just never goes away, however much I know the medical facts intellectually or what to expect’. Whatever your experience, therefore, we recommend that you have a look at this module, even if it is not directly addressing you in your current role.

This unit will apply to many hospice staff because they may only ever have cared for one or two patients in a Prolonged Disorder of Consciousness even after years in the job. 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. Even those as the lowest end of PDoC (‘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

Make some notes and focus your listening

In addition to looking different from 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: PDoC patients 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 “Introducing 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 patient 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 someone 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 woman 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.”

Doubts about, or difficulty understanding, how the decision to discontinue CANH was reached: Many staff are only involved in caring for a PDoC patient after the decision to cease all life-sustaining interventions has already been made (e.g. after they are moved to a hospice) or even in a rehab setting, depending on their role and training, may have little insight into how the decision was reached. They therefore have little idea about the efforts made to establish what the patient themselves would want in his or her situation or be aware of all  efforts made to maximise the person’s chances of recovering to a quality of life that he or she would value. Some staff may may 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 our course on “Law, Ethics and Best Interests”. 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 (See ‘Further Resources, unit 5.1). The BMA/RCP 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 1: Since the landmark Supreme Court case of Re Y in 2018, withdrawal of CANH from patients in a vegetative (or minimally conscious) state no longer requires a court application. There is a rigorous process for clinicians to follow in order to investigate and document such decisions (see RCP guidelines 2020 reference above). A court applications is only needed if there is disagreement about what is in the person’s best interests, or the decision is ‘finely balanced’. 

Note 2: 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 raise them 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: “Law, Ethics and Best Interests”.)

Concerns about pain management: Staff worry about whether the patient is experiencing hunger (e.g. if their stomach rumbles) or is in pain but unable to express this. The National Clinical Guidelines on PDoC produced by the Royal College of Physicians have clear suggestions for how to manage such potential symptoms (see earlier units in this course). Nevertheless, 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.

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“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.

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 is admitted 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: Sometimes staff 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, they may interact with them as if they are fully conscious, celebrate family and cultural events – surround their lovde one with a sense of family and community. This is what hospice staff are used to, but they may find it disconcerting alongside what they are being told about the patient’s level of consciousness or about the decision to discontinue life-sustaining treatment. On the other hand, some families 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.

Read the comments below

Have a look at the comments other learners have added below – from both a healthcare professional and from family perspectives. Also, reflect on the information you have worked your way through so far.

Is there anything that surprised you or particularly resonated from the experiences and perspectives discussed here?