Palliative care can be one of the most sensitive areas that an occupational therapist can work in. A common misconception of this speciality is that intervention only comes in the last few days of someone’s care, but that is certainly not the case. It is a role that can help patients rediscover life, relationships and achieve goals, no matter how small.

Jenny Streather is an occupational therapist and the AHP Lead at St Barnabas Hospice in Lincolnshire, where they have a small team of five OTs and four physiotherapists. They cover the county of Lincolnshire based from Lincoln, Grantham, Boston, Louth and two inpatient units in Lincoln. The hospice teams see approximately 9000 people every year, delivering free, high quality, compassionate end of life care and support for patients, their families and carers.

Jenny spoke to The OT Magazine to share more about her role and that of an OT in the speciality of palliative care in a hospice setting.

“Between the team we cover the inpatient units and the community settings. In Lincoln there is an 11-bedded unit – and it’s important to mention what we deliver there is not just end of life care, it’s palliative rehabilitation and symptom management. When patients have problems with managing symptoms that will obviously impact on their function and ability to carry out the activities they wish to do. We have a really great team of OTs and physiotherapists that can help support patients back to the level they were before, or as close to that as possible.

“We also deliver community services – supporting patients in their own homes within our day therapy settings, and the wider community as well. I think one of the most important things that we do, we enable patients who have a life-limiting or terminal diagnosis to live life to the full, we are not just there for patients who are in the last days of life, we will see people in the last years, months as well as those days. I think people have that misconception of hospice that we will only see people in the last days of life – however it’s not about that – palliative could mean years.”

Jenny acknowledges that many associate hospices with a cancer diagnosis, however, she explains that they see patients who are diagnosed with everything from Parkinson’s disease, respiratory and cardiac conditions, degenerative neurological conditions to young people who have lived through childhood conditions, and more recently they have been focusing on supporting patients who are experiencing frailty.

Looking more specifically at the role of an OT within the hospice Jenny speaks passionately about it and highlights the vital difference that an OT can make to someone who is living with a terminal diagnosis.

“I think that one of my favourite ways of summarising our role as OTs within any hospice setting, is our delivery of palliative rehabilitation as – the transformation of the dying into the living. We restore a patient to a person, we are not just focusing on the physical limitations of someone’s diagnosis, it’s the psychological, the environmental, the emotional impact of symptoms. We are very open to a lot of interventions, we certainly think outside the box a lot of the time and I think that’s something that’s a real selling point for OTs within the speciality.”

Emotional resilience

Naturally a role working with patients who have life-limiting or terminal illnesses, can be challenging and emotional, but Jenny talks about her role as rewarding and insists that the hospice is far from a sad place to work.

“I think it’s definitely one of the most physically and emotionally challenging job roles I have worked in, but I think it is the most rewarding job an OT can do.

“I think St Barnabas Hospice and palliative care in general is not a sad place to work, it is one of the most supportive specialities an OT can work in. You have got that really close MDT support around you which is huge in helping build resilience. To have that knowledge that you can empower a patient to regain any element of control and choice over their lives at a time when things become structured by hospital appointments and treatments, I think you can change the focus from the condition and what the person can’t do to what the person can do. I think that really helps with that emotional side because you can turn a negative into a positive.

A family approach

Including the whole family in palliative care is of vital importance and is something that the team at St Barnabas Hospice strive to provide. They recognise that engaging family members in discussions about care, goals and support is extremely beneficial to the family as a whole and it can help open up difficult dialogue around their worries and concerns around end of life care and preferred place of care or death.

“I think as an OT I certainly engage in a lot of discussions with patients and family members around changes in role and relationship. It’s something we see change and evolve throughout a patient’s journey and I think engaging in discussion around this often supports family members and patients in opening up around their worries, concerns and priorities for the patient. I think that is something that is really empowering as an OT in the hospice, being able to talk about those roles and relationships, that is a part of the job I really enjoy.

“Something that I have been able to do is supporting patients and family members in rediscovering their relationships and their roles despite the diagnosis and we don’t see the family members as an addition to that patient’s care.

“They can lose the balance, from daughter, son, father, mother, husband, wife – that all becomes diluted and the role of carer takes over. I think some of our work as OTs is really trying to support family members and patients in rediscovering their roles and relationships with each other.”

St Barnabas Hospice offers an excellent wellbeing service which encompasses family support services and bereavement groups. The internal structure means that they are able to offer that family support when it is needed, whether that be pre bereavement or post bereavement.

“If patients indicate they would like to have that support we can start that early on, we also offer support for after death, where we have one-to-one counselling within all the localities. There are also different levels of group support. We have a phased group approach where there is initially a very supportive structured group and then as time goes on and when people are ready, that group will transition into more of a social group – so it’s a really interesting model of bereavement support.”

Perceptions of death

Jenny’s role in palliative care and at the hospice has given her a new and very open perspective when it comes to talking about death. She even refers to death as an occupation.

“I often refer to death as an occupation, it has meaning and purpose to the person with the diagnosis and also the family.  The memories around that death and the years, months, days leading to the death, will live on with the family members and I think that is how I impact as an OT.

“Death is one of the few certainties that we have in life and I think that the value in the job I do within the speciality is summed up there really. I think the role of OT within St Barnabas will continue to grow and it’s really exciting for us in the profession and the speciality. I think in Lincolnshire OTs and other AHPs are increasingly seen as strong leaders within organisations and I think that will continue to drive the value of the profession as well.”

Jenny and the team at St Barnabas pride themselves on their approach to palliative care. The whole team has an understanding of the vital rehabilitation they can offer and know the difference that rehab can make to a person’s life, no matter what stage they are at in their care.

“One of my quests in life as an OT within palliative care and certainly as the AHP lead for St Barnabas Hospice is to challenge the perception that people with a palliative condition have no ‘rehab potential’. It’s something as a team we continue to see, I think it is another myth. We rehabilitate our patients who might be experiencing emotional or psychological distress as well as any physical limitations. It may not be the traditional view of rehabilitation – getting someone up and walking – but we certainly rehabilitate patients to meet their own individual goals and I think that fundamentally is what rehabilitation is about – it shouldn’t be lost because of the patient’s condition. One of my quests in life is to dispel that myth.” stbarnabashospice.co.uk

Get your copy of The OT Magazine