Chapter 12 Oncology and Palliative Care
Introduction
• Cancer rehabilitation, although a relatively new concept, is now recognised as an essential component in the cancer journey (Rankin et al, 2008).
• Rehabilitation in cancer care ‘aims to improve quality of life irrespective of aetiology or life expectancy’ (Cheville et al 2007).
• Patients can therefore maximise their independence and obtain the best physical, social, psychological, and work-related function during and after their cancer treatment.
• Palliative care rehabilitation is still poorly understood by many professionals, but it is becoming increasingly accepted that patients, regardless of prognosis or diagnosis, can benefit from rehabilitation services at all stages of their disease.
• There are four accepted rehabilitation stages recognised by Dietz (1980) (Box 12.1).
Box 12.1 Cancer rehabilitation stages
• Preventative: reducing the impact of expected disabilities and assistance in learning to cope with any disabilities
• Restorative: returning the patient to pre-illness level without disability
• Supportive: in the presence of persistent disease and the continual need for treatment, the goal is to limit functional loss and provide support
• Palliative: further loss of function, put in place measures which eliminate or reduce complications and to provide support (symptom management)
Underlying principles of management
• Before considering treatment it is vital to have an understanding of the assessment required for this group of patients and the reader is referred to Chapter 12 in Volume 1.
• Physiotherapists working in the field of cancer and palliative care are able to offer comprehensive assessment and treatment regarding the management of different symptoms in the acute, primary and tertiary care settings.
• A physiotherapist’s primary aim in oncology and palliative care is to maximise independence and reduce the effects that cancer or progressive degenerative illnesses have on an individual’s physical, psychosocial and economic functioning.
• Physiotherapeutic objectives will be diverse (Küchler and Wood-Dauphinée 1991), but will be determined by a whole-person approach to assessment (physical, psychological, social and spiritual) followed by appropriate goal setting in partnership with the patient (ACPOPC 1993).
• There are a number of principles which should be applied to cancer and palliative care rehabilitation, the most important of these is co-ordinated care, requiring effective communication with a multidisciplinary team (MDT) working approach (Bliss et al 2000).
• It is particularly important when treating or giving advice to patients to provide written information to reinforce the treatment plan.
• In oncology and palliative care, in many instances the aim is for symptom management and not complete alleviation of the problem.
• This is something that can be challenging for less experienced physiotherapists or those coming from a different environment where the aim is complete resolution of symptoms.
Communication skills in oncology and palliative care
• Communication underpins every aspect of the care provided for patients and their families and is the key to effective team work (Heaven and Maguire 2008).
• Good communication consists of the ability to assess the patient’s communication needs and to tailor communication to these needs, while maintaining realistic hope (Lugton et al 2005).
• Patients in oncology and palliative care will have many worries and concerns that they find difficult to express.
• During interactions, it is important that the patient is given full attention and is not rushed.
• It is essential to be aware of both verbal and nonverbal communication such as facial expression, tone of voice and body language.
• Open questions should be used to encourage the patient to talk, for example ‘How are you feeling today?’ rather than ‘How is your pain?’
• It is essential to establish what the patient knows about their condition, a useful phrase might be ‘Can you tell me about what has been happening to you?’
• Enquire from the patient if they have had any problems since the initial assessment and what the specific nature of the problem is.
• In an outpatient or community setting where the patient has been referred for a specific problem, it is important to give a patient the opportunity to share other problems too.
• As an example the following statements represent the interaction that may occur:
• These questions provide the patient with an opportunity to raise other issues that concern them.
• Following the initial assessment a patient may have had time to reflect on their issues.
• This can happen after specific questions have been asked, which may not always happen as people are often frightened of asking the ‘wrong thing’.
• The patient may decide to change the priorities that they decided on a previous attendance, this is an indication that the patient has engaged with the process and not avoiding confronting the problems that need to be dealt with.
• Sometimes this conversation may bring out information that was previously unknown and indicate the underlying anxieties that a patient may have.
• Throughout the treatment, the patient should be encouraged to express feelings. For example, it may be appropriate to ask ‘is there anything about the treatment that worries you?’. ‘What is it about the treatment that concerns you?’
• The physiotherapist may get a chance to find out about the patient’s anxieties. For example:
• Sometimes patients have concerns about their quality of life. Reflecting a question back to the patient may allow deeper meanings to be aired, for example:
• It may be useful to verify what the patient has just said to avoid any misunderstanding.
• It is not always possible to provide a direct answer to a direct question from a patient particularly in terms of prognosis.
• It is best to be honest and maintain hope during communication and therefore a vague answer to questions initially will allow their response to be gauged.
• More specific details may be given depending on the reaction of the patient or if they request more information.
• It is not always possible to provide answers to the questions asked by patients as in many cases the answer may not be clear.
• Always give the patient enough time to talk in the way that they want to, encourage them to talk but avoid pressurising them. For example:
• The physiotherapist should be aware of the patient’s need to talk and provide opportunities for this to happen, however there may be times when the conversation begins to uncover issues that are beyond the ability of the physiotherapist to manage.
• In these cases it may not be appropriate for a conversation to be continued and the physiotherapist will need to discuss this with the patient and offer alternative options for issues to be discussed.
• In these cases the physiotherapist should be aware of the appropriate professional to refer the patient to.
• The physiotherapist may not always know the answer to a question. It is important to acknowledge this by saying ‘I don’t know’ or ‘I’m not sure about that’.
• Offer to find out the answer to the questions or the most appropriate person to provide the answers.
• It is important to remember that patients may want to know certain things at different times during their illness and the physiotherapist must be sensitive to these changing needs to avoid upsetting the therapist–patient relationship so necessary for achieving treatment outcomes.
Goal setting
• Any additional information disclosed by the patient following the initial assessment may lead to the treatment goals that were set following the initial assessment needing to be re-evaluated and reset.
• The goals will need to be discussed with the patient and jointly agreed as being practical and achievable in the short, medium and long term as necessary.
• The physiotherapist must always try to engender the possibility of the patient achieving success and not allow goals to be unattainable.
Multidisciplinary working
• The key to successful physiotherapy treatment in oncology and palliative care is working closely as part of a MDT.
• This will provide a continuum of care through diagnosis, treatment and survivorship.
• This group of patients can have complex and multifactorial issues that need to be addressed by a team with relevant skills and knowledge.
• The physiotherapist should ensure consideration is given to all aspects of the patient’s problems, and involvement of other members of the team is arranged when necessary.
• NICE have described the domains of care in cancer rehabilitation and each assessment of a patient’s rehabilitation needs should consider:
• If the physiotherapist is unsure if referral to another professional is indicated they should discuss this with a senior colleague or with the other professional directly in order that each individual case is given due consideration.
• Working in a close MDT in oncology or palliative care can be one of the most rewarding aspects of this specialty and is one thing likely to provide maximum benefit to the patient.
• Living with advanced incurable disease can affect all aspects of life, creating psychological, spiritual, and existential challenges as well as demands for symptom control and physical care. It is therefore rarely, if ever, possible for any one professional to meet all the needs of a patient or family (Haugen et al 2009).
‘A single profession, like a single model of care, cannot meet the holistic, fluctuating needs of patients and carers. The knowledge and skill of many professions including medical, nursing, pharmacy, social work, physiotherapy, occupational therapy and chaplaincy bound together by communication and teamwork is vital’ (Mount et al 2006).
Psychological aspects
• It is vital to consider the psychological aspects of being diagnosed with and living with cancer or a life-limiting illness when considering physiotherapy management.
Anxiety and depression
• Fear and anxiety are normal reactions to stressful situations, such as those undergoing treatment for cancer.
• Depression is when a patient’s mood is low most of the time for several weeks or more and the relationship between cancer and depression is complex and multifactorial.
• The physiotherapists should be aware of the issues and be able to identify the patients who may need referral on to a specialist.
• Common presentations can be breathlessness, muscle tension, dizziness, sweating and panic attacks, all of which may be identified by a physiotherapist.
• Depression may also be expressed by a patient with no motivation, or who feels helpless, hopeless or guilty or to blame.
• The most common anxiety and depression assessment scales used in a health setting are the Hospital Anxiety and Depression Scale (HADS) or the Brief Edinburgh Depression Scale (BEDS).
• Both scales are simple and short, providing a pragmatic method of screening for anxiety and depression.
• Mild anxiety and panic attacks may be eased by the physiotherapist teaching simple relaxation techniques or the patient taking part in gentle exercise with support.
• Treatment may consist of active listening and allowing the patient to share their concerns, fears and frustrations.
• If the physiotherapist does not feel able to manage the patient’s problems or feels they need further investigation it is essential to refer on to the relevant member of the team, which may be a social worker, counsellor or psychologist.
Breathlessness
• Twycross (2003) defined breathlessness as ‘the subjective experience of breathing discomfort’. Breathlessness has been noted to be ‘subjective and like pain, it involves both perception of the sensation by the patient and their reaction to the sensation’ (Heyse-Moore et al 1991).
• Therefore, the patient’s emotional state and other symptoms can and will have a direct impact on the symptom of breathlessness.
• The treatment of breathlessness in oncology and palliative care employs similar techniques to those used in respiratory physiotherapy.
• The evidence shows that non-pharmacological management of breathlessness is effective for both malignant and non-malignant disease (Bausewein et al 2010; Bredin et al 1999, Corner et al 1996).
• Before providing specific advice, it is helpful to provide the patient and family some basic education about the anatomy and physiology and the functions of breathing. This should be done at an appropriate level for each individual and once a patient has a good understanding of how the lungs are structured and work, often this will lead to an alleviation of anxiety.
• The following are suggestions that may assist the patient, the technique must feel comfortable for the patient or they may increase anxiety:
• The following are suggestions to manage breathlessness when carrying out daily activities:
Anxiety and relaxation
• Breathlessness will often cause anxiety and can be a very frightening experience.
• Education and reassurance will often ease some of this distress but simple relaxation techniques may also be useful.
• The most commonly used methods include simple diaphragmatic breathing and progressive muscle relaxation.
• Any relaxation method must be tailored to the patient and their preferences.
• Some patients may also find the calming hand tool useful which was designed to help control panic attacks (Burnett and Blagbrough 2007).
• Good control of breathlessness can alleviate both physical and psychological distress to patients and their families and therefore can have a significant impact on quality of life.
• The physiotherapist does not aim to alleviate the breathlessness, but to help teach the patient how to manage the symptom.
• These techniques are appropriate for anyone suffering from breathlessness, due to cancer or any other condition.
• For further information see the breathlessness rehabilitation pathway (NCAT 2009a) available online.
Body image
• The image we have of ourselves is our own impression of our physical appearance and what sort of person we feel we are.
• This image is built up over time from observing ourselves, the reactions of others, and a complex interaction of attitudes, emotions, memories, fantasies and experiences, only some of which we are aware of (Regnard and Kindlen, 2002).
• Our body image is also affected by social interactions and how we relate to others, our feelings of achievement and self worth, our sexual image of attractiveness and our spirituality and morality.
• Cancer and its treatment can produce various temporary and permanent changes which can have a devastating effect on patients’ feelings and their attitude to their own body which can affect their psychological health.
• It is often thought that body image problems should be referred for psychological assessment and treatment but it is the responsibility of all health care professionals to be aware of body image issues in the oncology and palliative care setting.
• The physiotherapist’s ability to actively listen to the concerns of the patient are of paramount importance, and often a simple open discussion and acknowledgement can help to bring down barriers, reduce feelings of isolation and fears of rejection.
• The focus of intervention in the body image services generally covers seven domains and it is important that the physiotherapist has an awareness of these areas of treatment as some of them may sit well with standard physiotherapy interventions and planned outcomes (Box 12.2).
• Work in these domains can improve perception of body image by working on self esteem, anxiety and mood, increase coping efficacy in situations that are challenging, increase social activity and improve relationships with others.
• Whilst awareness of body image treatments is essential the physiotherapist must be aware of their own competencies in communication skills and must not hesitate to liaise with other more experienced members of the MDT.
Box 12.2 Management of body image, the seven domains
The use of clothing to cover or shield an area, such as a scarf, jewellery or make-up
2. Functional adaptation – e.g. use of a stick for proprioception in peripheral neuropathy
3. Enhancing self worth through
4. Supportive expressive therapies – disclosure and counselling
5. Desensitisation programme – gradual exposure formally or informally as in repeated consistent reactions of others
6. Enhancing coping strategies by
7. Compensatory activities with a pleasure focus, i.e. generate positive mood states
Hope
• Hope has been described as ‘a multidimensional dynamic life force characterised by a confident yet uncertain expectation of achieving future good, which, to the hoping person is realistically possible and personally significant’ (Dufault and Martocchio 1985).
• The fostering of hope and the prevention of feelings of abandonment are part of the physiotherapeutic intervention (Doyle et al 2005).
• Hope needs a goal and realistic goal-setting is a core physiotherapy skill.
• Patients need attainable goals to help maintain a sense of control and to reframe a vision for the future.
• Some patients choose to avoid receiving information as a strategy to maintain hope therefore gentle honesty, empathy, optimism and excellent communication skills are required to navigate the patient through the uncertain course ahead.
• Living with incurable progressive disease does not necessarily mean living without hope.
• Kylma et al (2009) conducted a review of 34 articles and identified key factors contributing to and threatening hope in palliative care.
• Some of the key factors that are of particular relevance to physiotherapists are listed in Table 12.1.
• Because hope is inextricably linked with life, health and illness, it has become an essential component of healthcare.
• As well as supporting the patient it is important to give emotional support to the patient’s significant others, as they will be jointly involved in fostering hope in the patient.
• Suggested hope-fostering interventions include:
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