
Module 3: Supporting staff
3.1 Introduction to supporting staff

Congratulations on completing the first two course modules. We’re now going to focus on the needs of staff.
Healthcare professionals may have some specific training needs around looking after PDoC patients, especially when it comes to the discontinuation of Clinically Assisted Nutrition and Hydration. As the previous unit pointed out, it is essential that the Royal College of Physicians guidelines are considered (see ‘Further Resources’, unit 5.1) and that all staff involved are properly prepared and supported.
Our research with healthcare professionals found that challenges can include being distressed by the decision to discontinue life-sustaining treatment, having questions or doubts about the decision-making process or about the patient’s condition, and being disconcerted by how the patient appears (eg if they appear very physically healthy or even ‘awake’).
They may also have concerns about how to support the family and feel uncertain about their competence to provide good care.
Some staff may feel undermined in their professional identity – a decision to discontinue life-sustaining treatment challenges their own sense of what they are doing in their job and the relationship they have to the person they have been caring for. Often people can feel quite unprepared for some of their own reactions.
- First experiences: Staff may find their very first experience of caring for a patient following CANH-withdrawal particularly challenging. Offering training well in advance of this happening can be helpful, as well as providing timely team support.
- Cumulative experience: Staff may also find the cumulative emotional challenges of caring for several patients in this situation difficult, especially if it ends up as a high-proportion of their work load. (See our course “Caring for PDoC Patients” for a discussion of emotional labour and burn out). Staff resilience, however experienced the person is, should never be taken for granted, and ongoing supervision is key.
Care is needed to support all staff, whatever their level of involvement in this area.
Support also needs to be tailored to different staff depending on issues such as their existing expertise and the context in which they are working.
- Hospices: Healthcare professionals working in hospices, for example, may be unfamiliar with PDoC patients, and this raises particular issues for them.
- Hospitals: Staff in settings such as high dependency units, may have different issues (e.g. being more used to having the goal of ‘discharging’ a stable patient to another setting).
- Hyper-acute, rehabilitation and long-term care: Those working in longer term settings may have another set of challenges again. They may be used to being able to offer meaningful rehabilitation and take action to enhance quality of life. They may also have cared for a PDoC patient for many months or years and feel attached to them. For example, we met with one team of healthcare workers who had looked after a woman in a permanent vegetative state for over 30 years. The idea of the patient’s death, perhaps especially following the discontinuation of CANH, may be very disturbing.
This module starts by exploring issues primarily raised by hospice staff. It then goes on to explore issues for staff in hospitals, 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 other contexts. This is for two main reasons.
(a) There are lots of overlaps between the issues facing staff in different settings, and it is worth recognising that some issues may still impact on you even when you don’t expect them to (e.g. because of your level of experience in providing PDoC assessment and care).
(b) Understanding the different knowledge-bases, cultures and perspectives in different settings helps ensure good mutual support, skill-sharing, reflective practice and high quality patient hand-overs.
Note: Throughout this course we use the term ‘staff’ in its broadest sense to refer to anyone working in a setting caring for PDoC patients. All staff can benefit from being included in the conversation. In care homes, for example, we emphasise the importance of including housekeeping and maintenance staff. Something we’ve learned from delivering this course is that volunteers may also benefit from training and support. Look at the observation from Althea, a hospice volunteer, written in the comments section at the bottom of this unit.
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I could relate to the feelings of staff who came in and discovered the patient had died. I am a hospice volunteer and I had a long-term patient and family that I really cared for, loved actually. I know boundaries and all but it was hard not to love the gracious and selfless 18 year-old girl and her sweet family. I found out she had gone into a coma from Facebook instead of hearing about it from one of her nurses or another team member. I was very angry, hurt, and felt they did not think I mattered because I was “just” the volunteer. I immediately flew back from a trip to attend her bedside and her family invited me to stay when they disconnected her life support. I was honored and grateful for this privilege I grieved not only her loss but the way I felt the hospice treated me. They could have done it better and I suggested in the next team meeting that volunteers be included in the phone chain list. They never did it thus confirming that they thought less of the volunteers than the paid staff.
I am so sorry that happened to you, and your comment is such an important insight and pointer for ways of improving and expanding support – thank you for that.
I agree, palliative care is essentially given as a result of good team work where the patient and caregiver are the center surrounded by all the healthcare workers, supporting staff and volunteers putting in their best to help the patient and the care giver. Although to start a palliative care one can start off as single person who takes on many roles, slowly expanding as people join; but a good team leader is someone who appreciates each of his team member along with recognizing each members talent and allowing him/her to use it to the best of his/her ability for qualitatively good patient care. Similarly, it is necessary that the team also support each other at the time of any members need, to continue the bonhomie in the group. Each and everyone should have the feeling of oneness in the team.
it is extremely essential that each member of the team be given equal importance be it the doctor, nurse or volunteer as each one devotes time and energy in contributing to improving the quality of life of the patients
We have recently held informal support sessions for staff on our rehab unit following decision being made to discontinue life sustaining treatment and provide palliative care for a patient. These support sessions were so valuable and lots of the themes you have included above were raised. Particuarly around concerns about caring for family and how family will manage. I think staff not directly involved in assessment and decision making, but who have been heavily involved in patient-care, found it valuable to understand the process. This is something hopefully we can continue to improve on in future.
Staffs requires adequate training to best support and care for these patients as well as understand Palliative pathway.
With the right training I believe it would help answer their questions and relieve concerns and doubts..
I work in the Neuro-Rehab unit I believe that organising support sessions for the staffs who look after PDoC patients especially in end of life is very important.