Over the last five years, allied health professionals at St Christopher’s have been developing gym-based exercise groups with great success – reflected in increased numbers, attendance, and in a formal (published) evaluation of physical and wellbeing based measures and patient feedback. This also prompted the title for two study days for allied health professionals: ‘Rehabilitating the Dying’ and ‘Life, Death and Exercise’. Both were repeated due to sell-out attendance.
However, while physiotherapists and occupational therapists were successfully developing palliative rehabilitation, at St Christopher’s there was little overlap into other disciplines and traditional models of medical care:
- A patient on the ward had been washed in bed in the morning by the nurses, and then came down to the rehab gym where they were able to work on the treadmill and exercise bike, and then afterwards returned to the ward where they ate lunch back in bed, all the while wearing their pyjamas.
- Another patient had been at home able to attend to his own personal care and the next day on admission to the hospice had been washed and dressed by healthcare assistants, in the bed. When asked why he had not got up and asked to get dressed he replied: “I didn’t think I was allowed”.
- Another patient was visited at home in the morning by a clinical nurse specialist and then travelled in as an outpatient to attend the gym in the afternoon.
As this incongruity was explored by members of the multidisciplinary team, there was acknowledgement of the need to move from a traditionally paternalistic attitude towards a more rehabilitative approach and that this was in fact the original vision of palliative care that Dame Cicely Saunders had: helping patients to live until they die.
How does this model work in practice?
We established a Multidisciplinary Rehabilitation Working Group, including staff from different locations (inpatients, community, day services) and disciplines (social work, nursing, complementary therapy, doctors, arts) alongside representation from our senior management team. It was widely agreed that rehabilitation cannot be something that allied health professionals do in isolation in the gym, but a rehabilitative approach needed to be embraced by all the multidisciplinary team.
Over six months the group met four times and began to explore some key questions about practice, care delivery and professional attitudes. In order to affect change, subgroups were also formed for the different locations of service delivery, eg inpatient unit, community, to establish short and long-term goals as well as ‘quick wins’ that could be implemented immediately.
- Encouragement of ward patients to get up, wash in the bathroom, get dressed, self-medicate, eat meals away from the bed area.
- Encouraging self-care and independence on the ward rather than always offering assistance.
- Working with patients to make plans for the day using timetables and diaries if needed.
- Focused multidisciplinary team meetings on goals rather than problems.
- A language change, eg from “what’s the matter with you?” to “what matters to you?”
- Replacing a nursing post with an occupational therapist/physio when a vacancy came up in day services.
- Some healthcare assistant quick rehab training slots with physio working with real patients on mobility.
Looking to the future, our shared goal is to cultivate a multidisciplinary culture of enablement and patient empowerment (as opposed to over caring and institutionalisation), where troublesome and debilitating symptoms are controlled not as an end in itself but as a step towards facilitating achievement of a goal or a wish that maximises the quality of someone’s life right up to death.