Samuel, an 89 year old widower with uncontrolled heart failure, described his struggle to maintain his independence:
“I wouldn’t say it was my symptoms it’s just err well it is tiredness umm the effort that has to be put into it to actually carry it out even a simple thing and ummm you could very easily I feel let yourself go.”
Patients with long-term conditions frequently experience episodes of decline, from which they struggle to reach their previous level of function. Like Samuel, they describe the battle of maintaining independence and not ‘letting themselves go’. Nurses involved in their care must strive, alongside the broader multidisciplinary team, to support patients to make tough decisions about their individual compromises between striving for their previous level of function and activity, and accepting help or making adaptions. By embracing enablement approaches to care provision, nurses can empower patients to maintain independence with ADLs and help them to actively identify where support is needed.
Individual choice is critical and palliative nurses have an important role to play in supporting patients to actively express their choices, preferences and goals around which all palliative care interventions should be based. There is increasing evidence demonstrating the importance of ‘patient activation’ – the knowledge, skills and confidence a person has in managing their own health and healthcare(1) – to improve ability of individuals to make health-related decisions. Consequently, palliative care multidisciplinary teams must cultivate the skills to promote patient activation and develop an evidence base of how approaches such as motivational interviewing, integral to health coaching, and self-management can be adapted to the palliative phase of advanced illness. These represent core elements of Rehabilitative Palliative Care.
Nurses have an essential role to play in Rehabilitative Palliative Care. This requires a change of perception – rehabilitation cannot be restricted to an activity conducted in a gym, led by physiotherapists but instead must be an integrated component of all palliative care activity, to allow all members of the multidisciplinary team to support the ethos of living well until death.
- Hibbard J, Gilburt H. Supporting people to manage their health. Kings Fund; May 2014.