Professional perspectives of rehabilitative palliative care

Individuals from a range of disciplines share their perspectives of rehabilitative palliative care.

Palliative care clinical manager

Diversity in leadership – what difference does it make?

Leadership is important. Ultimately a leader’s clinical background (if they have one) will be irrelevant because good managers and leaders have some awareness of their own lens through which they view the world and are open to seeing through others. But what happens when those other lenses and perspectives are entirely missing?

I am relatively new to hospice care, being in my current middle management role for just over three years and being in a community palliative occupational therapy role on the periphery of a hospice for two years before that. In that time I have observed and learned a lot about the history of palliative and hospice care alongside the current context, but perhaps most importantly, about the culture of hospice care.

I recognised early on that:

  • Rehabilitation and a rehabilitative approach was not as accepted or practiced as in my previous NHS roles.
  • There was a huge disparity in what, indeed if any, AHPs were employed in hospices and that this does not reflect the NICE guidance.
  • Most leadership roles in hospices are only open to nurses.
  • Palliative care education and training has been established to be nurse focused and for AHPs and other professions to take part they may have to adapt the programme.
  • Leadership is recognised as a need for the future of palliative/end of life care but investment is limited to nurses only even as recently as 2014.(1)

These days AHP and other health and social care professional roles are integrated into the NHS to form multidisciplinary teams; however, this is not uniformly the case in hospices… yet.

With my interest piqued by what I had observed, I conducted research on the provision of palliative rehabilitation in adult UK hospices when I completed an MA in Hospice Leadership in 2013. I found some interesting things to go some way to explaining why rehabilitation seemed to sometimes rub against, rather than blend with, hospice care. The main finding: that there is a dominant culture of nurses and ‘caring’ in hospices, and that currently the enabling paradigm that underpins the ethos of AHPs can clash with this. However, a few hospices are joining the two paradigms – and this new paradigm is helping hospices meet the growing and complex needs of their communities in a more sustainable way.(2)

So what? Without AHPs and other health and social care perspectives available and included at leadership and decision-making levels in hospice organisations – hospices have huge blind spots. When considering an ageing population, with multi-morbidities who will live longer with more associated disabilities in a climate of limited resources, AHPs do have alternative ideas on how to support those people sustainably through hospice services. AHPs are problem solvers, with pragmatic and valuable contributions to make – and in my experience are often at the forefront of supporting change to improve services. The AHP workforce is well trained, motivated and current – most have established AHP and/or discipline specific groups affiliated with their professional bodies such as ACPOPC (Association of Chartered Physiotherapists in Oncology and Palliative Care) and HOPC (College of Occupational Therapist Specialist Section in HIV, Oncology and Palliative Care). Why would hospices not want to develop such people into leadership roles and have management and leadership opportunities available and open to them?

The drawback of hospices being almost singularly ‘nurse’ focused at the leadership level is that it will almost certainly remove many alternative possibilities that could contribute to the ‘hospices fit for future’ dialogue that we are currently having. In the same way that AHPs bring a different perspective to the MDT and holistic care of the patient, they bring a different perspective to the solutions needed right now to meet the needs of people living with and affected by life-limiting illness.

So diversity adds values, this is something we already know, but it has yet to be translated into the hospice leadership context. I challenge hospices: look at your management structures, in fact go further, look at your clinical structures too – do you have AHPs? Are they truly part of the multidisciplinary team or do they sit on the sidelines? Are your management and leadership roles open to professions other than nurses? Are the same education opportunities available? And if not, what steps will you take to address this – now – for the future?

References

  1. NHS England. Actions for end of life care 2014 -16. NHS England; 2014.
  2. Wosahlo P. An analysis of the implementation of palliative rehabilitation in five UK hospices using the Stakeholder Salience Model. Progress in Palliative Care. 2014; 22(6):342-346.
Penny Wosahlo, Independent Living Team Manager, Farleigh Hospice

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