Physiotherapists are playing an increasing role in caring for people with a year or less to live. Louise Hunt talks to some of them
Palliative care is changing beyond all recognition. The very definition of palliative care has been rewritten: palliative care teams now treat more non-cancer conditions, such as coronary heart disease and neurological disorders. Add to this the fact that more and more patients live longer with incurable cancer. This shift is underpinned by government policy recognising the importance of rehabilitation, as well as the recent End of Life care strategy, published by the Department of Health in July. The strategy encompasses all patient groups with a prognosis of one year or less to live, as well as calling for people to have more choice over where they end their lives. The net result for physiotherapists working in palliative care is twofold. The scope of practise has become much broader, and more and more physios are becoming involved in the field. ‘These are exciting times,’ says Sarah Fisher, chair of the Association of Chartered Physiotherapists in Oncology and Palliative Care. She also points to another change – the blurring of boundaries between palliative care and long-term conditions treatment. ‘Traditional palliative care was end of life, now it is looking at a longer trajectory. It is not easy to define. It is very episodic. People might have physiotherapy for a specific problem and then come back for something different as people’s needs change over time. ‘The end of life care strategy is about the last year of life, but no one’s got a crystal ball. For me it is about people being empowered to pick up the reins of life again.’ EMPOWERING PATIENTS This empowerment philosophy runs through all the palliative care settings where physios work: within acute, community and hospice multidisciplinary teams. Physiotherapy objectives within these settings differ depending on what stage a patient is at. Some may be actively dying, and here physiotherapy input is purely on the lines of positioning and respiratory. Longer-term patients are worked with on an individual basis, maximising quality of life and maintaining mobility and independence. Susan Savage works within an acute specialist palliative care team at Queen’s hospital, Burton. ‘In acute palliative care teams the main focus is on getting people into their preferred place for end of life,’ she says. ‘We do a lot of joint assessments with other specialists, such as occupational therapists and nurses, and have discussions with patients. As physios we will try and increase functionality as much as possible. The goals are set around what is most important to the patient, although we also have to make sure those goals are realistic.’ IN THE COMMUNITY Because there is a long waiting list for palliative care physiotherapy in the community, the acute team also provides an outreach service in people’s homes. Isla Lynn-Smith, a clinical specialist physio within Gateshead Health foundation trust palliative care team, provides a similar service. She works in the hospital, as well as visiting patients in the community. The unit’s remit is people with two years or less to live. ‘There is a bit of a perception that you don’t get rehabilitation in palliative care, but I would say that is the main element of our job,’ she explains. Goals will naturally range widely depending on a patient’s condition. Ms Lynn-Smith says: ‘We look at quality of life. Even if someone is bed-bound, we can look at what they need to live the end stages of their life at home. The emphasis could be on chest care or positioning of the mattress.’ On home visits physios may give guidance on fatigue management, and are increasingly using motivational techniques, such as cognitive behavioural therapy to help patients with breathing difficulties and anxiety. THE HOSPICE ROLE In hospices, physios may treat people with more complex needs. Aileen McCartney, who is the only physiotherapist within a multidisciplinary team at the Wisdom hospice, Kent, says: ‘Patients may have multiple symptoms, such as breathlessness and be highly anxious.’ Knowing how to handle people who may be very emotional is an important skill. Ms McCartney says: ‘There are techniques and treatments that are similar to other areas of physiotherapy, but my approach is more holistic. I spend a lot of time talking with patients about how they feel.’ She says while you do learn this aspect on the job, training in advanced communication skills is invaluable.
A day in the lifeJanice Fiddler works at the Derian House children’s hospice in Chorley, Lancashire and is the only physiotherapist on a multidisciplinary team. She works five days a week on flexible shifts, both in-house and in the children’s homes, based around the needs of the children. She describes her typical day: ‘I usually help to get the hospice children up in the morning and get them bathed and dressed with the carers. I do this so that I can pick up where the children are at. In the hospice, I will do physio treatment in the morning and throughout the day as necessary. A lot of my work is around pain relief. I am supporting them with physiotherapy but also making it fun. We have a snooze room and soft play area where I do massage and aromatherapy and offer acupuncture to the older children. It is a very holistic environment and sometimes you may not set goals in the way you would normally do. I might link a goal with a music or hydrotherapy session . For the hospice-at-home service, I make sure families are comfortable using any equipment, and work closely with paediatric and nursing teams. I help families to get back to as near normality as possible. After working in a senior management role I wanted to go back into hands-on work and I wanted to be able to make a difference and work closely with families. You could say it is a different job from true physiotherapy, it is very varied and you have to dig deep sometimes to resurrect skills you have had in the past. But I do enjoy it, the hospice is a very happy environment to work in.’ LETTING PATIENTS LEAD Ms McCartney points out that palliative care is something all generic therapists can provide. However, there are differences between this and specialist palliative care. With the latter, she says, treatment is much more focused on what patients want. ‘In other areas of physiotherapy what a patient wants may not necessarily be best for them, but in palliative care it probably is. The main difference is we’re getting the goals from patients.’ Being led by patients requires a high level of skill and a broad range of experience, she says, and it is likely most palliative care physios will have held a senior position in a relevant field such as older people’s services or respiratory. ‘Treatment doesn’t always follow black and white guidelines. You sometimes have to take risks and think laterally, so experience in a lot of different areas is essential.’ The drive to provide more non-cancer patients with palliative care is also presenting opportunities and challenges within the different settings. Ms Lynn-Smith is concerned there is still a big gap in getting non-cancer patients referred to her acute service. ‘It’s important to see these patients at a point in time when they get to that end stage. However, we tend not to get the non-cancer patient referrals early enough, they tend to be sent to other services first and don’t automatically know there is a palliative care team.’ She is hoping that by next year the service will be flagged up through the new Choose and Book NHS computer system. Meanwhile, Sarah Fisher, who is joint lead for palliative care at Surrey community health services, is finding that with the shortage of community palliative care physiotherapists, it is necessary to work closer with other specialists. ‘I can’t support every multiple sclerosis patient in my patch, but I can support other generic community physiotherapists. They have brilliant community skills, but do not have the palliative care knowledge base. Having access to specialist support can make all the difference.’ She also sees it as an opportunity to spread awareness of physio practice by developing partnerships with specialists in other fields, such as coronary heart disease nursing teams. ‘It may be that I offer them a consultancy approach, I do a lot of work with breathlessness techniques, or it could be joint visits and care plan assessments,’ she adds. REWARDING WORK Whichever setting they are in, the physios agree that, although the work might be emotionally tough sometimes, it is also deeply satisfying. ‘It is really rewarding to work with patients and their families,’ says Ms McCartney. Ms Savage concurs: ‘Every patient you meet is completely different with complex needs. It is rewarding knowing people value your input and you’re helping them to achieve goals such as spending quality time with their families, and that is really important to them.’
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