
Module 3: Supporting staff
3.4 Strategies for supporting staff
In discussion with people working in hospices and in hospitals and rehabilitation/long-term care it became clear that they would appreciate specific support around end-of-life care for PDoC patients. This was especially true around the discontinuation of CANH (although many of the points apply to other ceilings of treatment too). Based on the suggestions made by a wide range of health care professionals we have produced the check list below.
Seven Support Strategies for Staff – A Check List
- Do all staff involved have information about the best interests decision-making processes that are followed (such as is provided in this course). Alternatively do they know about the Advance Decision made by the patient if this was the route to forgoing or discontinuing treatment?
- Are they fully aware of the difference between making a clinical judgment and making a person-centred best interests decision?
- Do they understand how patients in Prolonged Disorders of Consciousness may appear (e.g. with open eyes) and understand the differences between reflexes and purposive behaviours?
- Are they informed about how testing is used to systematically interpret patients’ behaviours to assess levels of consciousness and inform prognosis?
- Do they have detailed guidance about the palliative care plan – especially around pain management? (See the Guidelines produced by the Royal College of Physicians referenced in module 2 of this course).
- Do they have access to resources explaining some of the issues faced by families of these patients. Such information is available later on in this course or it can be useful to look at the resource created for families at: https://healthtalk.org/experiences/family-experiences-vegetative-and-minimally-conscious-states/death-and-dying/
- Is there follow up support for staff, including 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 discontinuation of life-sustaining treatment (including in clinical supervisions and Schwartz Rounds).
How many of these questions can you confidently respond to by saying ‘yes’ – and does this apply to everyone in your organisation, or only to some of the staff who come into contact with the person and their family?
If you’d like to print off this check list to use with individual cases, as well as a general guide, you can do so here. Seven Support Strategies for Staff – A Check List
If you’ve had to say ‘no’ to some of the questions on this check list then think about how this might change. Some of support can be done through management, training or mutual support among colleagues. Crucially, we think that hospice staff can support hospital and rehab/care staff and vice versa. It is partly through sharing their expertise that a strong end-of-life care support system can be built and/or sustained.
Some issues also need to be addressed at the level of organisational strategy.
Organisational issues
At an organisational level it is important to have:
- rigorous and transparent decision-making processes (in compliance with the Royal College of Physician 2020 guidance) which ensure appropriate input of diverse staff expertise and consultation with anyone “engaged in caring for the person or interested in his welfare” (s.4(7)(3) Mental Capacity Act 2005)
- recognition of ‘conscientious objection’ and processes in place to ensure respect for diverse views (of staff, patients, and family members) – while ensuring it is the patient’s own values that remain at the centre of decision-making
- 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 healthcare providers – and how these goals fit (or conflict) with best interests decision-making about life-sustaining treatment
- open reflection about how staff navigate the contradictions and tensions that can be involved in caring for people in PDoC – and how a commitment to treating them as if they can understand and are aware of everything, and fully involving them in conversations and activities, has to sit alongside a rigorous assessment of their conscious levels and rigorous assessment of their best interests in relation to life-sustaining treatment
- honest reflection on the management or ‘ethos’ of the organisation and how this supports (or can be an obstacle to) patient-centred decision-making
- consideration of workload allocation and distribution, and the proportion of time spent in different areas of care with different patient populations (to avoid overload and burnout)
- open acknowledgement of emotional challenges, the strength of the feelings that can be generated and the need for support.
Particular challenges in rehabilitation and long-term care settings
- “Why her, and not him? Why now and not then?”: One of the challenges in rehab and long-term care settings is that there is sometimes variability in the application of best interests principles, and a long history where these principles might not have been applied at all. In some rehab and long-term care settings, this means staff are working through a period of transition and change. This can be very unsettling and leave staff with lots of questions. Staff can be left asking about decisions to discontinue treatement: “Why her, and not him? Why now and not then?”. It can be useful to think more widely and reflect with the team about how best interests are being addressed for this particular person and for other patients 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 be worried that it raises questions about other patients or might feel very threatening to their families. Debriefing may also be particularly important to address questions staff may have about what the current course of action means in relation to the previous course of action for a particular patient. Staff may, for example, feel guilty about long-standing life-sustaining interventions when a rigorous assessment has determined that such intervention is not appropriate – and possibly has not been appropriate for a long time. Honest and explicit engagement with such concerns is important.
- “Why them?” Sometimes staff may feel the discontinuation of treatment feels completely random, or, even worse ‘targeted’. If CANH is withdrawn, for example, from two patients over 70, some caring for them may wonder if this is because older patients’ lives are less valued, rather than because of assessment of their best interests (including consideration of each patient’s co-morbidites, current experience and their prior views as individuals). It is important that those providing care understand and can have confidence in a robust, evidence-based and person centred decision making process that is free from agism, racism, disablism, sexism or any other form of discrimination against a category of people. Obviously there should also be avenues for raising concerns if such discrimination is suspected.
- Ulterior motives? Sometimes families in conflict can make accusations about each others’ motivations. A woman’s partner may accuse a daughter of wanting her mother dead so she can inherit. The daughter may counter than the partner only wants to prolong treatment as it enables him to keep living in the house. A son may accuse his mother of persisting in insisting on treatment because she can not tolerate losing control of his sister, the mother may counter that her son just wants his sister dead so he can get on with his life. A patient continuing to live, or dying, will almost inevitably have emotional and financial implications for those around them – that does not mean that this is necessarily influencing how friends and family represent the patient’s views, although it may be important to explore views to tease out what they know aboiut the patient’s own wishes. In any case, it is important that health care providers understand that such allegations about ‘ulterior motives’ are not something they can evaluate – and they should try to remain neutral. Cases involving disputes about the patient’s best interests have to go to court – and the court will assess whether such accusations have any validity or relevance.
- Staff experiences of bereavement: whatever the circumstances, when a patient dies staff may feel grief. They 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 […], 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). 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’ and ‘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.
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.
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 discontinuation of CANH (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 hear by chance 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 and that these might not be intense
- it may be important to have some way of marking a death within the organisations
- 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; handovers and formal supervisions might, or might not, be the (only) 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.
Optional Continuing Professional Development (Unit 3.4). Develop support strategies.
If you’d like to engage more with the issues discussed in this learning unit then do the optional CPD exercise below. Otherwise, scroll down to the invitations to write a comment, and consider adding something to the learner chat forum, Then move on through the course.
CLICK HERE for optional CPD exercise: Develop support strategies
Review the list of support strategies provided in this learning unit and record the following
- Which suggestions do you think are particularly useful (or not) and what suggestions might you add?
- How could you act to help ensure some of these support strategies are in place? Potential actions will depend on your role within the organisation, but try to pick at least: one thing you could do as an individual, one thing you might do as part of a team, and one thing you might discuss with a manager or your organisation. Be as specific as possibly about what action you need to take.
- If you are a team leader or manager then talk with colleagues too and draft an action plan to ensure support is in place (a) to addresses the needs of staff in the context in which you are working and (b) to reach out to colleagues in another organisation or setting.
Post a comment below
What has helped support you in your own organisation? What has worked well, or not so well? Do you have you suggestions to add to the above recommendations?
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I think the strategies around support of staff around death is very important. I am a student and I remember coming in one day to placement to find out a patient who had moved into the ward the previous day had died. Even though I had only seen this patient once it shocked me how it affected me.
There is definitely food for thought in this particular module. Working on a specialist rehab facility we are very fortunate that deaths are not that frequent but when we do see a person dying on the ward it does impact ALL of the care staff and maybe the way news of a death is communicated could be addressed.
I found the checklist above and the other bullet pointed list of support staff for patients who are dying really useful, I have forwarded them onto my line manager so we can ensure that we are working towards having them all covered in our unit
Thanks for letting me know – glad to see the checklist is useful
The support strategy for the staff is good and should be used not only in places where long term care is given but is essential in the intensive care unit too. Here some patients may have been admitted for a long time, been nursed and stabilized after some very critical period and yet may suddenly die due an unexpected complication. In such cases, it comes as a big shock to the nursing staff to come and find the bed empty. However as intensive care is a very busy place sometimes they may not get time to even grieve for a moment as the
work demand in intensive care is usually high. So debriefing, open acknowledgement of the emotional challenges, the strength of the feelings that may have been generated and the need for support is absolutely essential according to me too. This module has given me points which are beneficial and can help me develop a more cohesive workplace where each person supports the other member of the team.
So interesting to hear how some of these issues apply to the intensive care setting too
the checklist is indeed very helpful
This link: http://healthtalk.org/peoples-experiences/nerves-brain/family-experiences-vegetative-and-minimally-conscious-states/death-and-dying
does not appear to be working.
Very interesting discussion around supporting staff. I am not sure how much, if any, the staff in the care home received after my sister was transferred to a hospice.
Very interesting discussion around supporting staff. I am not sure how much, if any, the staff in the care home received after my sister was transferred to a hospice.
Its very interesting topic.
The checklists are really useful, thank you.
very informative