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Home , Health professional, Palliative care

Research Allied ’s views on for people with advanced Parkinson’s disease

Mary Waldron, W George Kernohan, Felicity Hasson, Susan Foster, Barbara Cochrane, Cathy Payne Aims: Allied health professionals (AHPs) have a key role in the delivery of palliative care through rehabilitation. However, evidence suggests that rehabilitation remains an area of neglect in palliative care. This study explores the views of allied health professionals in delivering rehabilitation in palliative care to people with Parkinson’s disease. Methods: Twelve allied health professionals, from both generalist and specialist settings, who had experience of working with people with advanced Parkinson’s disease and/or palliative care took part in interviews and/or focus groups. Findings: Participants viewed palliative care as holistic care, however, the rehabilitation care they provided was impeded by a number of personal and organisational barriers, and negative perceptions. Misconceptions as to the value of rehabilitation in the palliative stage and a lack of training resulted in uncertainty as to when and how it could be introduced. While the importance of early referral to AHP rehabilitation services was highlighted, organisational and administrative barriers prevented many people from accessing such care. Mary Waldron is Research Assistant, Conclusions: Many health professionals have a role in palliative rehabilitation, but barriers prevent University of Ulster; early referral and ongoing access to such services. There is a need to educate professionals in the W George Kernohan is Professor of Health principles of palliative rehabilitation, combined with providing targeted resources to promote shared Research, Institute of care and responsibility. Research and School of Nursing, Key words: n allied health professionals n barriers n palliative care n Parkinson’s disease n qualitative interviews University of Ulster; n rehabilitation Felicity Hasson is Senior Lecturer, Submitted 6 June, sent back for revisions 18 June; accepted for publication following double-blind peer review 1 October 2010 Institute of Nursing Research and School of he role and contribution of allied it has been associated with end-of-life care Nursing, University of health professionals (AHPs) in the and ; however, the concept has been Ulster; Susan Foster is palliative stage of a ’s journey extended to include care for both malignant Specialist Practitioner in is increasingly being acknowledged and non-malignant long-term conditions, such Palliative Care, Northern T Ireland , and (AHP Palliative Care Project Team, 2004). as Parkinson’s disease. The goal of palliative Lecturer in Palliative This recognition is reinforced by a statement care is to achieve the best for Care, University of of the UK’s Department of Health (DH): and their families. However, it is argued Ulster; and Barbara ‘Allied health professionals work across all that palliative care services in the UK will need Cochrane is Director of Medical and Care healthcare settings, supporting people of all additional resources to provide a comprehensive Services, Northern ages in their recovery from illness or in cop- service to people with neurodegenerative dis- Ireland Hospice, Belfast; ing with disability. They enable children and eases, to ensure they are given the same priority Cathy Payne is Joint adults to make the most of their skills and abil- as patients with cancer (Clarkson, 2008). Lecturer in Palliative ities, and to develop and maintain healthy life- Many aspects of palliative care are applica- Care for Allied Health Professionals, University styles. They provide specialist diagnostic and ble early in the course of a life-limiting condi- of Ulster and Northern treatment services and are often the critical tion such as Parkinson’s disease (Department Ireland Hospice, Belfast, link in the management of lifelong conditions of Health, and Public Safety, Northern Ireland and rehabilitation support’ (DH, 2008, p 4). 2010). Effective symptom control, and inter- Palliative care has been defined as ‘the active ventions to assist with activities of daily living Correspondence to: Mary Waldron holistic care of patients with advanced progres- are examples of such aspects (Laakso, 2006; E-mail: ma.waldron@ sive illness’ (National Institute for Clinical Department of Health, Social Services and ulster.ac.uk Excellence (NICE), 2004, p 207). Traditionally, Public Safety, 2010).

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Palliative and rehabilitation services have (Kale and Menken, 2004; Giles and Miyasaki much in common. Both involve complex 2009). Greater public and professional under- interventions from a team of health profes- standing of palliative and end-of-life care will sionals, and the success of any intervention ensure that patients, carers, families, com- must usually be judged on a background of munities, and staff will have the right knowl- improvement, stabilization, or continued dete- edge and skills available, at the right time, rioration in the person’s condition (NICE, and in the right place, to deliver compas- 2004). Palliative rehabilitation can maximize sionate, appropriate and effective generalist patients’ function, promote their independ- and specialist palliative and end-of-life care ence, and enable them to adapt to disability. It (Department of Health, Social Services and has been stated that palliative care and reha- Public Safety, 2010, p 6). bilitation should be integrated into treatment All healthcare providers can influence from the moment a life-limiting diagnosis is the quality of a person’s experience of pal- made. (AHP Palliative Care Project Team, liative and end-of-life care, through providing 2004). Indeed, Doyle et al (2004, p 3) describe either generalist or specialist palliative care palliative care rehabilitation, at its best, as (Northern Ireland Cancer Network, 2008). ‘the transformation of the dying into the liv- General palliative care is the care given to ing… the restoration of a patient to a person’. people with advanced disease by profes- The rehabilitative and adaptive services pro- sionals who are not specialists in palliative vided by AHPs, such as physiotherapists, occu- care, but who aim to provide assessments, pational therapists, and speech and language basic levels of symptom control information, therapists; lend themselves to palliative care, psychological, social, spiritual (if appropri- usually focusing on symptomatic relief, rather ate) and practical support, and open com- than treatment of illness. Several key documents munication and signposting to other services highlight this and support the role of AHPs in (NICE, 2004). Specialist palliative care is improving quality of life to patients with pallia- the active of patients whose dis- tive care needs (The End of Life Strategy, (DH) ease is not responsive to curative treatment, 2008; The Cancer Reform Strategy, (DH) 2007; and whose symptoms are complex, requiring Fulfilling Lives, (NCPC, 2000). the services of dedicated palliative care pro- However, evidence suggests that the AHP fessionals. Complexity may relate to difficult role in providing rehabilitation in palliative physical, emotional, or spiritual symptom con- care is often overlooked (AHP Palliative Care trol issues, such as patients needing to address Project Team, 2004; Schleinich et al, 2008), unsettling questions about the ultimate mean- and that gaps may exist between patients’ ing and purpose in their lives (McCain et al, reports of rehabilitation needs and referral 2003), their identity and self-worth, with some rates to AHP rehabilitation services. As just people seeking to re-examine their personal one example, Laakso (2006) highlights that beliefs. It also refers to quality of life issues a chart audit in a major Australian where patients require specialist intervention revealed that despite nearly (NICE, 2004). two thirds (65%) of patients with cancer pre- Literature suggests AHPs play a vital role senting with indications for physiotherapy, from diagnosis to the end-stages of progres- just over a tenth (12.8%) were receiving phys- sive illness, through the provision of rehabili- iotherapy treatment. tative, adaptive and supportive interventions In response to this situation, the authors (Michel, 2001; Santiago-Palma and Payne, decided to explore the views of AHPs, including 2001; AHP Palliative Care Project Team, physiotherapists, speech and language thera- 2004; Kealey and McIntyre, 2005). Indeed, pists, and occupational therapists, on the issues, there is evidence for the efficacy of AHP ther- barriers and options involved in the delivering apy for a range of conditions, including can- of rehabilitative care in the palliative care stage, cer (Cole et al, 2000; Hopkins and Tookman, using Parkinson’s disease as an example. 2000) and Parkinson’s disease (Dean et al, 2002; Nijkrake et al, 2007). Literature Review Parkinson’s disease is a chronic, progres- sive, neurological, degenerative disorder that In the , palliative care is affects cognitive processes, emotion and auto- viewed as a multi-disciplinary approach, nomic function. Common symptoms in peo- involving the co-ordination of primary, sec- ple with Parkinson’s disease include rigidity, ondary, social, and voluntary care services. tremor, gait problems, falls, , autonomic

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disturbance, , , speech Christian, 2005), research suggests a number and swallow problems, and sleep disturbance of barriers exist which restrict access to AHP (Royal College of et al, 2008). The services which could help patients achieve early application of palliative care principles this goal. For example, the provision of AHP is very relevant to Parkinson’s disease because services in the UK has been found to differ it is a progressive non-curative illness, with in amount according to region (NICE, 2006). symptoms that can significantly affect both Unmet palliative care needs have been widely the person with Parkinson’s disease and their reported, with common problems includ- loved ones’ quality of life (NICE, 2006). ing lack of information, ad-hoc delivery of While AHPs play a part in all components of services, and a lack of preparation for the palliative care, they specifically have roles in advanced symptoms of disease (Goy et al, rehabilitation and supportive care. ‘Generalist’ 2008; Giles and Miyasaki 2009). AHPs rarely AHP clinicians provide services to patients specialise in palliative care (Dowell, 2002; with palliative care needs in , health Schleinich et al, 2008), and current compe- centres and community settings, but not in tency levels required for AHPs do not require specialist palliative care sites. These AHPs specialist palliative care education and skills, may still have specialist skills and knowledge only ‘an awareness of palliative care issues in other clinical areas. It has been argued that in keeping with their post’ (NICE, 2004). It ‘generalist staff should have access to edu- has also been argued that multidisciplinary cation and training on palliative and end-of- rehabilitation can improve the experience of life care... They should also have access to living with a long-term neurological condition specialist palliative care advice and services, (Royal College of Physicians et al, 2008). for example, if a patient’s condition exacer- While effective palliative services rely on bates’ (Department of Health, Social Services the correct identification of needs (Lanoix, and Public Safety, 2010, 5.4, p 45). Specialist 2009), it has been argued that for people AHPs provide services in the main, or solely, with neurological diseases, very few pallia- within specialist palliative care settings tive care staff are familiar with the diseases (AHP Palliative Care Project Team, 2004) and symptoms, and as such are reluctant to for the management of unresolved symptoms take over their care (Borasio and Voltz, 2005). and complex psychological end-of-life and Moreover, it is estimated that 90% of cur- bereavement issues, via specialist multi-disci- rent palliative care AHP services are being plinary teams (Department of Health, Social provided by generalist clinicians who do not Services and Public Safety, 2010). work in dedicated or specialist palliative care The benefits of rehabilitative therapy in roles (Allied Health Professional Palliative Parkinson’s disease can be demonstrated at an Care Project Team, 2004). early stage of disability, and should be part of The timing and process of referrals for disease management from the moment of diag- symptomatic management of Parkinson’s nosis (Montgomery 2004; Calgar et al, 2006). disease has also been found to be problem- Occupational therapists and physiotherapists atic. In the UK, referral to AHP therapy serv- use functional and other specific activities to ices normally occurs via generalist medical optimise physical, emotional, psychological, and nursing staff, but many patients are ini- cognitive, perceptual, and functional poten- tially discharged from the tial, encouraging the acceptance of untreat- at a point when no problems are perceived or able limitations, and facilitating adaptation anticipated, only to be referred back to neurol- as necessary (Dean et al, 2002; Montgomery ogy or to another service some time after a 2004; Calgar et al, 2006). Speech and lan- crisis has developed (Ward, 2003; Williams, guage therapists can provide strategies to help 2009). Indeed, Williams (2009) claims there is manage communication and swallowing dif- a general lack of preventative or anticipatory ficulties, which can impact significantly on the interventions by community staff with lim- quality of life of both patients and their car- ited involvement by GPs, community nurses, ers (Eckman and Roe, 2005). Therefore, it is physiotherapy, speech and language therapy important that patients and carers have access and . to information regarding the appropriateness The level of referral is dependent upon the and accessibility of AHP rehabilitation serv- knowledge and attitudes of the generalist prac- ices (Wressle et al, 2007). titioner, yet evidence suggests that AHPs are Although patients report maintenance of widely overlooked in the delivery of palliative independence as highly important (Olson and care (Hopkins and Tookman, 2000; Frost, 2001;

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Taylor and Currow, 2003; Canadian Association Participants of Occupational Therapists, 2005). For exam- A purposive sample of fifteen allied health ple, evidence exploring district nurses’ views of professionals, physiotherapists, occupational AHPs found misconceptions regarding the AHP therapists and speech and language thera- role, and a general reluctance to refer patients to pists, both from the generalist and palliative such services, viewing such services as unnec- care specialist settings, were invited to par- essary (Nelson et al, 2010). Consequently, ticipate in the study from both the National many people with life-limiting conditions such Health Service (NHS), and from the private as Parkinson’s disease have been found to lack and voluntary specialist palliative care sector regular support, review, or access to special- in Northern Ireland. ist AHP services (Parkinson’s Disease Society, AHPs, who had either cared for or had pre- 1994; Consumer’s Association, 2002; Nikjrake viously cared for patients with Parkinson’s et al, 2008; Hirsch and Farley, 2009). This is disease, who had an interest in Parkinson’s despite having relevant problems that are poten- disease and/or palliative care and who gave tially amenable to therapeutic intervention were included. Participants (Nijkrake et al, 2008). Dharmascena and Forbes were assured of confidentiality and anonym- (2001) state the fact that with current provision, ity. Participants were offered the opportunity there are insufficient resources for widespread to express views via focus group or individual extension of palliative care beyond the man- interview, depending on service exigencies. agement of malignant conditions. On the rare This study was completed over a period of occasion when referrals are made, the rationale nine months between 2008 and 2009. has often been poorly specified (Ward, 2003) or arbitrary (Keus et al, 2004), with most AHPs Data collection and analysis working in , without formal collabora- Interviews were audio recorded (with permis- tion or communication with other disciplines sion), transcribed and analysed thematically (Van Der Marck, 2009). using Miles and Huberman (1994) content However, despite some recognition that bar- analysis guidelines (widely recommended riers impede AHP palliative rehabilitation serv- as a standard content analysis framework, ice delivery, little research has been undertaken (van Teijlingen, 2003; Denscombe, 1998)). to explore this topic. Before researchers can Quantitative questionnaire responses were develop and test palliative care interventions input into SPSS (version 17) and analysed to led by AHPs, facilitators and barriers which obtain descriptive statistics. may confront them in their care of patients with All transcripts were anonymized prior long term conditions, such as Parkinson’s dis- to analysis, and were read and analysed by ease, should be identified. Purposeful samples of Table 1. health and social care professionals representing Interview/focus group schedule for allied health professionals community care were invited to participate in the study. Occupational therapists, speech and Palliative care: How would you define palliative care? language therapists and physiotherapists were the Do you think a patient with Parkinson’s Disease has palliative care needs? most prominent AHP disciplines in contact with Perceptions of patients’ and carers’ palliative care needs: people with Parkinson’s disease and their carers. What do you feel are the main palliative care needs of a patient with Parkinson’s? (Prompt: physical, emotional, spiritual) METHODS What do you feel are the main palliative care needs of a carer caring for a patient with Parkinson’s? Following ethical approval from the Office What are the barriers and facilitators to delivering palliative care: for Research Ethics Committees Northern What barriers (if any) exist which hinder your ability to deliver palliative Ireland, a qualitative, inductive and explora- care to people with PD? (probe: personal, relational, organisational) What barriers (if any) exist which hinder your ability to deliver palliative tory research design was used, with one-to- care to carers of patients with PD? (probe: personal, relational, organisational) one interviews and focus group discussions. What factors would help you facilitate the delivery of palliative care? An interview/focus group schedule, based on Experiences of services: the literature discussed previously, was devel- What palliative care services do you think people with PD need? oped, one which explored AHPs views and What palliative care services do you think carers of people with PD need? experience of palliative care, and barriers and What type of service (if any) do you provide? facilitators to delivering such care to people When do you think is the most appropriate time to deliver palliative care to a with advanced Parkinson’s disease, in the patient with PD? How do you think is the best way to deliver palliative care to a patient with PD? community (Table 1). Demographic variables were also recorded using a brief questionnaire. Additional comments:

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two researchers (MW and FH), as outlined them as independent as they can be, by Mays and Pope (1995), thereby enhanc- and the patient’s condition can change ing inter-rater reliability. The coding system quite a lot. When they are in the course was checked for its validity by a team mem- of their illness, their independence can ber who double-coded and checked the tran- change quite a lot, and they have a lot scripts, leading to the further refinement of of losses to come to terms with... and the coding frame. Descriptive statistics were we have to be adaptable, and change used to analyse patients’ demographics. the goals depending on how the person is... that’s part of our role, to move with FINDINGS the patient to improve their quality of life’. ( (OT) 1) A total of 12 AHPs agreed to participate in focus groups (n = 8) and individual interviews ‘To me, palliative care has been a phrase (n = 4); three declined due to pressure of work. used a lot with particularly terminal Participants worked in occupational therapy conditions, such as cancer. But I now (n = 5) physiotherapy (n = 4), speech and know that it is a much broader thing, language therapy (n = 3). Their ages ranged in that it is providing support for carers 30–65 years (modal group 30–39). Seven par- and for patients with Parkinson’s, ticipants worked in the community and hospi- throughout the disease process and tal sector, and their areas of expertise included not just at the very terminal stages – adult and , neurology and elderly support whether it’s from allied /physical disability, neurology and elderly professionals like ourselves, or from the care, progressive neurology, and stroke/adult palliative care team, or the Parkinson’s acquired neurology. All of these participants nurse, or the GP, just the whole’. had a generalist remit in palliative care pro- (Speech and language therapist (SLT) 1) vision. Four participants were based in the voluntary sector providing specialist palliative Many saw the AHP role in terms of physi- care. One participant worked as a generalist in cal needs, function, mobility, and enhanc- the private sector. ing their skills to aid activities of daily Analysis of the data identified four main living. Occupational therapist and physi- themes, including: otherapist participants stressed their involve- n The role of the AHP in palliative care ment in managing to maintain, or optimize n Personal barriers patients’ independence. n Organisational and administrative barriers ‘We will try, either to provide n Perceptual barriers. something or might look at a different Excerpts from the interview transcription which way of doing it, or we avoid the task – exemplify these themes are outlined below. maybe referring it on to other agencies, putting in adaptations or pieces of Role of the AHP in palliative care equipment, [providing] support and Therapists saw their roles as having a holistic advice.’ (OT1) approach and remit, offering practical, psy- chological and physical mobility support and ‘I would consider basic things like information, via a team of multi disciplinary getting sitting to standing, standing health professionals. While some participants and stepping round to the bed, sitting acknowledged the historic association of pal- on the bed to lying on the bed, lying liative care and terminal care for people with on the bed to getting up on the bed – advanced illness, such as cancer, all defined just transferring from one position to palliative care within a broad holistic frame- another, in relation to movement. As work, one based on patients’ and carers’ phys- time progresses and they have problems ical, psychological, spiritual, and emotional with initiation of movement, I give needs. One saw rehabilitation as being ‘differ- them advice on cuing, and tips on how ent’ from palliative care: to get started.’ (Physiotherapist (PT) 1) ‘[Our role is] probably slightly different in palliative care than it would be if Participants felt that carers of patients with you were aiming for rehabilitation. I Parkinson’s disease needed information about suppose it’s more that you’re improving each stage of the illness as it advanced, with the person’s quality of life and making someone to talk to, other than the patient, as

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they could become socially isolated. Carers care. Some felt it should be applied through- also need coping strategies and respite oppor- out the patient’s disease trajectory, and not tunities, as they deal with the increasing just at the final stages. Others saw it as more burden of caring, and later they might need appropriate nearer the end-of-life. Despite access to bereavement support. these differences, all participants agreed that Participants also emphasized the importance their patients’ opinions had to be consid- of AHPs providing continuity of care and ered from the start of their care. The decision building relationships with patients and carers. on whether or when to introduce palliative They felt it would be useful for people in the care to their patients’ care was said to be led palliative stage of life to have an AHP contact, by the patients’ response to their diagnosis, and recognised their role in delivering reha- and depended on the type of palliative care bilitation within palliative care for people with deemed necessary: generalist or specialist. Parkinson’s disease, and their informal carers. Organisational and administrative barriers Personal barriers All participants felt the problems with timing and The delivery of palliative rehabilitation was response rates to referrals impeded service delivery. impeded by a number of personal barriers, The timing of referral of patients to AHP including limited knowledge and experience services was viewed as a barrier to care. of caring for someone with advanced illness Participants felt that, in many cases, they were in the community. A number of participants called in only when there was some sort of felt that they were not specialists in the area impact on patients’ function, such as being bed- of palliative care or an advanced progressive bound, having chest problems, or poor com- illness, such as Parkinson’s disease. This was munication. If patients were referred to AHPs at particularly cited by those AHPs working the early stages of their condition, recommenda- in the voluntary sector palliative care field, tions could be made for their care, ones which who reported having had very few referrals of would be of benefit before the patients’ mobility people with Parkinson’s disease, and conse- and/or speech had deteriorated. quently not having much experience of caring ‘Ideally get [the person with Parkinson’s for their palliative care needs. disease referred] very early on, if you ‘I can’t recall ever seeing a person do get them then, there is quite a lot [person with Parkinson’s disease] you can do to prevent [the person] coming in for that reason and deteriorating quickly... you can give them certainly it, usually, seems to have strategies to... help them to cope with slow progression, so maybe it’s not when their speech starts to deteriorate, considered by some GPs that there and their swallow as well.’ (SLT 1) would be a benefit of... coming to the Day Hospice.’ (OT 2) ‘I think the benefit whenever we see the patients early on is you know you’ve Participants in the NHS sector on the other got a base line there. Whenever you hand spoke of their work as generalist and then review them, as we try to do here, some cited the need for training in the area of it means that you pick up any [little] palliative care. problems, and they can contact us if ‘The thing that we miss as a profession there are any issues developing.’ (SLT 2) is training and having the expertise, because we can be a bit generalist… Indeed, it was suggested that early referral So it would be training both in would also facilitate the establishment of a Parkinson’s and its management, and baseline for the patient’s capacity. Follow-up in the palliative care needs of someone appointments could then clarify and work on with Parkinson’s, because maybe that any deterioration in the patient’s condition. is something we [have] neglected in All participants identified a lack of terms of the way we are carrying out resources and funding as barriers to delivering our assessments, and maybe there is palliative care. Time pressures, having to pro- something we could learn if there was vide staff cover when necessary and to meet structured training out there.’ (OT 3) management targets in the community setting, could lead to long waiting lists. AHPs had Differing perceptions also existed in rela- to prioritize their time and their patient list. tion to when and how to introduce palliative There could also be delays in supplying neces-

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sary equipment and adaptions to the homes. care, viewing it as synonymous with cancer or Community NHS participants felt it was dying. Consequently, some therapists did not important to keep patients on ‘their books.’ If even mention the term ‘palliative care’ to their a patient is taken off their list, and re-referred patients, for fear of upsetting them. Others after a year or two, then they might have to go thought that an alternative term for ‘palliative back on the waiting list again. care’, or even dropping the term altogether, ‘Lack of funding [is a problem]... we have would help to overcome this barrier. a tendency to have secondary waiting lists Although all participants stressed the need in terms of people being assessed, but for input from other health and social care still having to wait on their equipment, or professionals, participants expressed concern their or whatever. Provision about the ad hoc nature of such multi disci- of equipment and adaptations in a timely plinary work, and stressed the need for better manner [is] important, but it’s not always communication links for effective multi disci- possible.’ (OT 3) plinary teamwork. ‘I’m not sure that our care is as ‘Now therapists on the ground are co-ordinated in a multi-disciplinary under such pressure to get through fashion as it could be or should be. them [patients] and move them on. We tend to work in our own isolated It’s really counted on face to face professional pockets. We talk about allocations, how many people are you multi-disciplinary work; it is a term that seeing, how quickly are you seeing is bandied about – but I’m not sure that them and we have moved away from the communication links between the a culture of looking at what are we professions are as good as they could actually doing with these people.’ (0T 4) be, because of [the] way we are set up and structured.’ (OT 5) Adequate resource allocation in terms of staff time was the main organisational/admin- ‘Most of the people with Parkinson’s, I do istrative barrier. see as having palliative care needs... It’s actually a lot of other professions, and Perceptual barriers if you don’t know the system, or how to Participants perceived patients and carers’ contact those people, very often different held negative perceptions of the term palliative people can be doing different things – Figure 1. Lack of referral of patients with Parkinson’s disease to specific allied because we are going into the house at health professional (AHP) palliative rehabilitation services can lead to a ‘cycle’ of different times – and you are relying on negative reinforcement the family, or the individual themselves, to relay the information to you, or using the GP as your key person for having all the information, and sometimes they don’t always have it.’ (SLT 3) Lack of referral of Lack of experience of people with Parkinson’s palliative care health disease by health and and social care social care Lack of genuine inter-professional working professionals of people professionals to with Parkinson’s disease and better understanding of the role and ethos palliative care of palliative care were the main barriers. The personal barriers to delivering palliative care to people with advanced Parkinson’s disease emerged from lack of individual knowledge and experience of caring for a person with advanced illness in the community, inadequate resources, and lack of genuine interprofessional working.

Hesitancy on part General perception that of health and social specialist palliative care DISCUSSION care professionals AHPs only provide care to refer people with for people with Parkinson’s disease to malignancy or at end- Findings from this study support the premise palliative care of-life that AHPs, such as speech and language thera- pists, physiotherapists, and occupational ther- apists, have a role in the delivery of care to people with Parkinson’s disease, from diagno-

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sis to end-of-life care, as outlined in policy and general negative perceptions of palliative care, research (NICE, 2004; DH, 2008). Although fears of losing amongst patients literature suggests that AHPs were widely and carers, and hesitancy on the part of health overlooked in the delivery of Parkinson’s dis- professionals to refer people to specialist pal- ease palliative care (Frost, 2001; Hopkins and liative care AHPs. Tookman, 2001; Taylor and Currow, 2003), Participants’ different views on the timing both generalist and specialist AHPs identified of when and how palliative care is needed are their role as having a holistic remit, offering consistent with findings from Ward (2003) and practical, psychological and physical mobility Williams (2009). Participants in both groups advice and interventions to patients (Santiago– highlighted the benefits of early referral to AHP Palma and Payne, 2001). Participants from the services for patients. Indeed, access to informa- NHS sector provided rehabilitation and adap- tion about rehabilitation resources and services, tation care to patients in a generalist setting, with earlier referral, was thought to result in while those participants from the voluntary greater benefits for patients in terms of quality sector worked with patients in a specialist pal- of life, reflecting the findings of Calgar et al liative care setting (Matcant and Rapin, 1993; (2006) and Wressle et al (2007). While UK pol- Dean et al, 2002). icies (DH, 2005; Royal College of Physicians et Specific personal and organisational barriers, al, 2008) endorse a multi disciplinary approach and negative perceptions were identified by all to the care of those with long term conditions participants as hindering their delivery of qual- and their carers, the findings from this study ity palliative rehabilitative and adaptive care to suggest that communication between AHPs, patients with Parkinson’s disease. A lack of spe- although felt to be good practice, was not for- cialist expertise in palliative care was cited as a malized within the NHS Community sector, and barrier by AHPs who worked as generalists in the had developed on an ad hoc basis. NHS sector (Schleinich et al, 2008). This reflects The lack of resources cited by participants the NICE (2004) guidelines, which require only raises fears of the inability of services to pro- an awareness of palliative care issues, rather vide palliative care to those with non malig- than the possession of specialist palliative care nant conditions, such as Parkinson’s disease education and skills. However, the participants (Dharmasena and Forbes, 2001) and lends also argued that palliative care could be given weight to Clarkson’s (2008) argument for along with usual care; care should ‘not be handed additional resources to provide palliative care over to specialist services.’ This concurs with the to people with neurodegenerative diseases. statement from the Allied Health Professional A perceptual barrier to the delivery of pal- Palliative Care Project Team (2004) that most liative care, evident from this study, is that current palliative care AHP services are provided patients and their families held negative views by generalists. on palliative care. Consequently, some AHPs Participants working in a hospice setting did not even mention the term ‘palliative care’ rarely saw people with Parkinson’s disease. to their patients for fear of upsetting them. This lack of referral has the consequence that hospice practitioners do not build up the Implications for practice expertise and experience in treating patients The data provide insight into the perceptions of with Parkinson’s disease. Indeed, participants AHPs regarding palliative rehabilitation therapy stated that very few patients with non-malig- for patients with long term conditions, and has nant conditions were referred for specialist identified barriers to the delivery of such care. palliative care rehabilitation, which concurs While AHPs play a key role in the provision with Borasio and Voltz’s (2005) position that of palliative rehabilitation, barriers to referral, most hospice staff are not familiar with neu- access, and delivery of such services, exist. The rological conditions. However, this study’s need to educate professionals and consumers in participants from the hospice sector did not the principles of palliative care, combined with indicate a reluctance to take over such care, targeted resources to promote shared care and given the opportunity to do so. Contrary to the responsibility, are required. literature, there were no difficulties with the referral process mentioned by participants. Limitations Figure 1 illustrates how the lack of referral of patients with Parkinson’s disease to spe- Within the UK, the term AHP covers a number cific palliative care rehabilitative services can of different professional groups, regulated by lead to a negative cycle of lack of experience, the Health Professions Council, which provide

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specialist diagnostic and treatment services Effects of home exercises on motor performance in clients with Parkinson’s Disease. Clin Rehabil across all healthcare settings (DH, 2008). The 19(8): 870–870 AHPs who took part in this study were physi- Canadian Association of Occupational Therapists (2001) Occupational therapy and end-of-life care. Position Statement. otherapists, occupational therapists and speech Can J Occup Ther 72(2): 121 and language therapists, and their views may Clarkson CJ (2008) The impact of national policy on palliative care on clients with neurodegenerative disease. British Journal not be reflective of all AHPs. While provi- of Neuroscience Nursing 4(7): 330–4 sion of rehabilitation services is a large part Cole RP, Scialla SJ, Lucien B (2000) Functional recovery in cancer rehabilitation. Archives of Physical and of the role of AHPs within palliative care, it Rehabilitation 81(5): 623–7 is important to recognise that all healthcare Consumer’s Association (2002) MS, Parkinson’s Disease and Physiotherapy. Ther Bull 40(5): 38–40 professionals have a responsibility to provide Dean KHO, Ellis-Hill C, Jones D et al (2002) Systematic Review palliative rehabilitation. of Paramedical for Parkinson’s Disease. Movement Disorders 17(5): 984–91 Denscombe M (1998) The Good Research Guide for Small Scale CONCLUSIONs Social Research Projects. Open University Press, Buckingham Department of Health (2005) The National Service Framework for Long-term Conditions. DH, London This study has identified barriers to AHPs’ Department of Health (2007) The Cancer Reform Strategy 2007. 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COMMENTARies

considered the term ‘palliative reha- It is hoped that recommendations arising from bilitation’ a paradox upon first hear- “ this study, including increased services, referrals I ing it some years ago. Palliative care was associated with maximizing and improvements in professional and consumer the life quality of patients and their families as the patients approached education, are actualised. the end-of-life, and rehabilitation was mendable. They provide rich understand-” neurological unit many years ago. She associated with restoring physical func- ing of barriers involving multiple levels, was anarthic and had barely any facial tion. As ‘palliative care’ broadened to including restricted knowledge of the movement, however, her eyes seemed encompass those with degenerative therapist/participants, inconsistent refer- to shine as she raised one (‘yes’) or two conditions, alongside end-stage malig- ral patterns, funding difficulties, and the (‘no’) fingers when stating her lyrical and nancies, and aimed to transform dying negative association of ‘palliative care’ melodic preferences. into living (Doyle et al, 2004), the inte- with death and cancer. gration of allied health professionals Doyle D, Hanks G, Cherny N, Calman K (eds) (2004) Oxford became imperative. Conclusions textbook of palliative medicine. Oxford University Press, This article highlights how allied health It is hoped that recommendations aris- Oxford professionals enable people to maximize ing from this study, including increased Satoh M, Kuzuhara S (2008) Training in mental singing while functioning, and thereby live to their services, referrals and improvements in walking improves gait disturbance in Parkinson’s disease patients. Eur Neurol 60(5): 237–43 full potential, until they die. There is professional and consumer education, are Scott D (1990) Practice wisdom: The neglected source of scant attention to caring for people liv- actualised, so that people affected by practice research. 35(6): 564–68 ing with Parkinson’s disease in the pal- long-term degenerative conditions receive liative care literature. Given uncertainty whatever support is needed. Alongside Clare O’Callaghan, PhD RMT surrounding the illness progression and the physiotherapists, occupational thera- Music Therapist its multi-systemic effects, the palliative pist and speech and language therapists Peter MacCallum Cancer Centre, and rehabilitation model of generalist and mentioned here, music therapists can also Caritas Christi Hospice, St Vincent’s Hospital; specialist care described here is appropri- be considered, especially in movement Clinical Associate Professor, ate. The authors’ efforts to understand therapies (Satoh and Kuzuhara, 2008) Department of Medicine, and Allied Health Professionals’ perceptions and as an accessible aesthetic life inter- Honorary Fellow, of facilitators and barriers to providing est. I remember a woman with Steele Faculty of VCA & Music this care, through investigating their Richardson’s Syndrome who participated The University of Melbourne, Australia ‘practice wisdom’ (Scott, 1990), is com- in group therapeutic song writing in a [email protected]

International Journal of Therapy and Rehabilitation, January 2011, Vol 18, No 1 57 Research

alliative care is an important Recent years have seen an increase in the inclu- approach to care for people with “ P an eventually fatal condition. The sion of palliative care in the undergraduate curricu- World Health Organization (2002) rec- ognises that the goal of palliative care is lum for health professionals as well as opportuni- to improve the quality of life of patients and their families through the preven- ties for post-graduate training and up-skilling. tion and relief of physical as well as ” psychological, social and spiritual con- than the sum of the individuals involved care for people at the end of life, and cerns. Palliative care may be delivered (Crawford and Price, 2003). who may have other learning priorities. by generalist health professionals for However, while numerous disciplines may However, for many allied health profes- the majority of people whose symptoms be engaged in the care of people with life- sionals, an increasingly ageing popula- and needs are not complex. However, limiting illnesses, it does not necessarily tion will result in a growing demand to when concerns are complex or beyond follow that they will be working cohesively provide aspects of palliative care in their the skill level of the generalist or primary together, or will recognise the need for day to day practice. care provider, specialist palliative care involvement of other health professionals. providers should be accessed. Hence, the imperative that all team mem- Conclusions Although an interdisciplinary approach This article bers have a good understanding of the potential contribution of each health pro- to end of life care is widely recommend- As discussed by Waldron et al, allied fessional and that a collaborative approach ed as best practice, it is not always avail- health professionals (AHPs) potentially is adopted by all members. Knowledge of able, particularly within specialist pal- make a valuable contribution to the care the individual patient’s disease trajectory liative care services. Many specialist pal- of people with an eventually fatal illness, and, importantly, the goals of care, along liative care services are under-resourced such as Parkinson’s disease. With many with co-ordination and care planning, are with regard to AHPs. Given that the goal life-limiting illnesses, particularly neuro- all needed to optimize patient care and of good palliative care is to prevent and degenerative disorders, early and ongo- ensure that appropriate health services relieve symptoms and optimize wellbe- ing support from AHPs to optimize func- are used at the appropriate time. A vital ing, input from AHPs is extremely impor- tion and support adaptive behaviour, contributor to such care is good inter-pro- tant. However, the growing demand in the face of physical and functional fessional communication and the develop- for palliative care means that generalist decline, is of paramount importance. ment of strong collegiate relationships with AHPs will be increasingly expected to AHPs such as physiotherapists and occu- key members of the care team. provide palliative care as a part of their pational therapists, social workers and practice. As a consequence, AHPs must also have an important Education develop and maintain the skills to care role in supporting caregivers to care for Recent years have seen an increase in the for their palliative patients, and become the patient and in maintaining their own inclusion of palliative care in the under- active members of the interdisciplinary health and wellbeing. graduate curriculum for health profession- team as a priority. This article identifies numerous bar- als as well as opportunities for post-grad- riers to the delivery of rehabilitation in uate training and up-skilling. Many coun- palliative care by AHPs that are similar tries have developed programmes target- Crawford GB, Price SD (2003) Team working: palliative care to the barriers for patients accessing as a model of interdisciplinary practice. Med J Aust 179(6 ing medical and nursing undergraduates. Suppl): S32-4 specialist palliative care services (Johnson Australia has developed an innovative Johnson C, Girgis A, Paul C, Currow DC, Adams J, Aranda S et al, 2010). Hence, solutions adopted inter-professional palliative care education (2010) Australian palliative care providers’ perceptions by specialist palliative care services may programme which provides the oppor- and experiences of the barriers and facilitators to pal- liative care provision. Supportive Care in Cancer. Online. be helpful for AHPs. One such solu- tunity for undergraduates to experience http://tinyurl.com/2vk4sdp (accessed 16 December 2010) tion was placing specialist palliative a collaborative approach to care and an World Health Organization (2002) National Cancer Control care services and individual providers insight into the role and practices of other Programmes: Policies and Managerial Guidelines. (2nd ed). World Health Organization, Geneva strategically as part of the interdisci- health professionals – thus strengthening plinary team involved in the care of  a team approach to care. relevant patients. For people who were not exposed to palliative care during their initial training, An interdisciplinary or who wish to update or improve their approach to care skills, numerous opportunities are now As part of an interdisciplinary team, at available. Online training programmes, both a generalist and a specialist pal- post-graduate training and short courses Claire Johnson PhD, RN, CM liative care level, different health profes- are available, and in some countries, Research Assistant Professor sionals broaden the care of people at the clinical secondment opportunities. While Cancer and Palliative Care Research and end of life – especially in identifying and developing and maintaining palliative care Evaluation Unit (CaPCREU) addressing the extensive range of con- skills may be a priority for people whose School of cerns that may be encountered. Indeed, substantive work is in palliative care, The University of Western Australia it has been suggested that a team the challenge is developing appropriate Perth, Australia approach should be able to achieve more skills in generalists who do not regularly [email protected]

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