Chapter 12 Oncology and Palliative Care
Introduction
• The primary aim of physiotherapy in oncology and palliative care is to reduce the effects of the disease and to maximize independence with regard to physical, psychosocial and economic function.
• Physiotherapeutic objectives vary, being determined by a holistic approach to assessment (physical, psychological, social and spiritual) and goal setting in partnership with the patient (Wood-Dauphinee and Küchler 1992, ACPOPC 1993).
• A holistic approach in oncology and palliative care is particularly important as patients tend to have a complex mix of symptoms and problems that may not be physical in nature. It is imperative that the physiotherapist considers how each of the patient’s problems link together, e.g. how anxiety may influence breathlessness.
• Goal setting is essential, with goals being reviewed relative to a patient’s changing condition, to maintain hope, increase confidence and to achieve a feeling of success, especially towards the end stages of life.
• Working in an oncology and palliative care environment can be emotionally demanding. The physiotherapist may often face sensitive situations where advanced communication skills are vital.
• If the physiotherapist is unable to answer questions from a patient they must seek advice from a senior member of staff.
Preparation for assessment
• In an inpatient setting medical notes will be a source of information about the history of the patient.
• The physiotherapist will need to explore the current history, previous history, social history, drug history and consider any recent test results e.g. blood results, MRI scans, X-rays, myotome testing and dermatomal testing.
• It is important to know normal values for tests and how results may influence a patient’s condition (Appendix 12.1).
• Before beginning the assessment discuss the case with the multidisciplinary team (MDT), to gain useful information and insight about the patient.
• In an outpatient or community setting, access the patient’s notes, which will contain clinic review reports, test results and plans for treatment.
• Find out how much the patient knows about their diagnosis and how much they want to know.
• Some patients use denial as a coping mechanism and it is important that this is respected.
• In some cases it may be the family who do not want the diagnosis or prognosis disclosed. To avoid colluding with family members the physiotherapist should discuss the situation with the MDT and get a consensus on how this should be managed.
• A physiotherapist should always discuss any concerns that they may have about communicating with the patient or relatives with a senior colleague.
• The physiotherapist should know why the patient has been referred, but allow the patient to express their concerns and problems.
• Discharge planning should start from the day the patient is admitted and should involve the MDT, including the hospital discharge co-ordinator.
• The physiotherapist needs to attend regular team meetings and case conferences, recognizing the needs and expectations of the patient.
Subjective assessment
Observations and values
• In the in-patient setting it may be important to check observations such as heart rate, blood pressure and blood values.
• With many oncology and palliative care patients, these normal values may be at the lower or higher ends and this does not necessarily preclude physiotherapy intervention.
• The physiotherapist should be aware of any relevant local policies or guidelines.
Communication
• Ensure adequate time and privacy have been allocated.
• The physiotherapist should introduce themselves to the patient and explain their role, sitting down if possible to indicate that they have time to listen.
• Open questions should be used to encourage the patient to talk, e.g. ‘How are you 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?’
• In an outpatient/community setting where the patient has been referred for a specific problem, it is important to give the patient the opportunity to share other problems too, e.g. ‘You have been referred by your consultant for… (the specific problem). How are you today?’ or ‘Have you any other difficulties that I may be able to help with?’ these openings provide the patient with the opportunity to raise other concerns.
• Ask the patient to prioritize their problems, if they have several, e.g. ‘What are your three biggest problems at the moment, starting with the one that is the most troublesome for you?’ This gives the patient the opportunity to highlight concerns from their point of view rather than the impersonal way that they can be listed in the medical notes.
• The patient should be encouraged to express their feelings, e.g. it may be appropriate to ask ‘what worries you most about your situation?’ Attending to verbal cues can help the physiotherapist to identify and explore a patient’s anxieties.
• Reflecting the question back to the patient may allow deeper exploration of concerns, which can then be discussed.
• It may be useful to summarize what the patient has just said from time to time and feed back to the patient, to check for accuracy and allow clarification of any misunderstanding.
• One of the most challenging tasks for a physiotherapist in oncology and palliative care is achieving the right balance between professional honesty and maintaining hope during communication.
• It is best to give a more generalized answer to questions initially and then check for the patient’s response, with a more detailed answer being given if the patient requests more information.
• If the patient stops in the middle of a sentence, repeating the last three words back to them may encourage them to continue.
• The physiotherapist should avoid filling silences with conversation. Silence may feel uncomfortable or lengthy to the physiotherapist, but it is likely that the patient will find such pauses a useful opportunity to think.
• The physiotherapist may not always know the answer to a question and it is important to acknowledge this, explaining to the patient that you will ask the most appropriate person to answer the question to come and speak with them.
• A patient’s information needs vary considerably during the course of their illness and it is important to be mindful of this.
• Some patients manage to live parallel realities, having the capacity to acknowledge the serious nature of their illness, yet hope for a cure or remission. Others can appear to have full insight and acceptance one day and be in denial the next, oscillating back and forth throughout the course of their illness. Accept a patient’s insight as it presents on a day-to-day basis.
• Having exchanged the necessary information, the patient and the physiotherapist can agree goals.
• Goals need to be relevant to the individual patient and in some cases they may need to be short term. If a goal seems unattainable, break it down into smaller goals. This is more likely to foster a feeling of success for the patient.
• Let the patient know that the conversation is coming to a close, this provides them with an opportunity to ask any other questions. ‘We have covered a lot of ground, is there anything else you would like to ask?’
Goal setting
• Following subjective assessment, goals need to be set with the patient.
• Goals need to be specific and personal to the individual (Bovend’Eerdt et al 2009).
• SMART goals can be set (Table 12.1), with involvement of the family or carers if the patient consents to this.
• To ensure effective multidisciplinary team-working the MDT need to be aware of the goals.
Specific | The goal should be specific to the individuals needs The goal is discussed with the patient to understand why it is important to them The patient’s diagnosis, prognosis, social background and timing of treatment intervention must be considered when setting the goals |
Measurable | The physiotherapist and the patient must be able to measure success It is essential the physiotherapist uses a repeatable outcome measure to show the efficacy of treatment, to guide clinical decisions and further goal setting |
Attainable | Goals should challenge the patient, but at the same time need to be achievable. Starting with short-term goals will allow the patient to maintain their motivation and then longer-term goals can be set |
Realistic | This is often the most challenging part when setting goals. The physiotherapist may need to negotiate with the patient and family/carers to ensure goals are not unrealistic. If goals are not going to be achieved it will cause frustration and upset for the patient especially |
Timely | The goal should have a clear start date and the physiotherapist should use reflections with the patient to show progression The goals should be set at the most appropriate time of the patient’s condition and reviewed on a regular basis A written diary may be useful to allow the patient to see written evidence of their progression |
Assessment of specific symptoms or problems
Breathlessness
• Twycross (2003) defined ‘breathlessness as the subjective experience of breathing discomfort’.
• Breathlessness is ‘subjective, like pain, it involves both perception of the sensation by the patient and his reaction to the sensation’ (Heyse-Moore et al 1991).
• The patient’s emotional state and other symptoms can have a direct impact on the symptom of breathlessness.
Assessment
• A respiratory assessment is undertaken, considering the diagnosis, treatment and care setting.
• The specifics of the assessment will vary, e.g. in an acute ward setting, a patient diagnosed with cancer may present with a chest infection, therefore it would be appropriate to auscultate the chest, check oxygen saturation levels and to observe the pattern and work of breathing. In a palliative care setting where a patient has advanced lung cancer, it is appropriate to focus on the breathing pattern and technique, considering factors influencing the breathlessness such as anxiety.
• Each patient must be assessed on an individual basis.
• The most commonly used outcome measures for breathlessness are the Modified Borg Scale (Box 12.1) and the Visual Analogue Scale (Figure 13.1, Chapter 13). Both are reasonably simple to use and most patients can understand them (Wilson and Jones 1989).
Box 12.1 Modified Borg Scale
0 | Nothing at all |
0.5 | Very, very slight, just noticeable |
1 | Very slight |
2 | Slight |
3 | Moderate |
4 | Somewhat severe |
5 | Severe |
6 | Severe |
7 | Very severe |
8 | Very severe |
9 | Very, very severe, almost maximal |
10 | Maximal |
Exercise tolerance/deconditioning
• Weakness, fatigue and deconditioning due to lack of exercise are common problems.
• Cancer treatments are toxic to the body and can result in marked loss of physical function.
• Patients in palliative care settings can have significant muscle weakness and mobility issues. The complexity of combined symptoms can be challenging, e.g. cachexia which affects muscle mass and exercise tolerance as a result of derangement in the body’s metabolism, due to a tumour or by the response of the body to a tumour such as cytokine activity (Hawkins 2007).
• Activity has been proven to be beneficial for cancer patients and the assumption that rest will help increase energy levels and exercise tolerance should be challenged (Hawkins 2007).
Assessment of de-conditioning and exercise tolerance
• Cancer patients may receive physiotherapy at any stage of their illness and in various clinical settings.
• Assessment for the level of de-conditioning will include multiple factors (Box 12.2).
• It is generally accepted that platelet levels should be above 20 × 109/L for gentle exercise and 50 × 109/L for increase in physical activity using resistance.
• Neutrophil levels should be greater than 0.5 × 109/L in order to avoid exposure to infection (Rankin et al 2008) (Appendix 12.1).
• Patients undergoing treatment are especially subject to physical and psychological change as they respond to therapeutic regimens (Schneider et al 2003).
• Assessment should include awareness of complications and avoid exacerbating the cytotoxic effects of treatments (Appendix 12.4).
• In palliative care, the assessment should be adjusted according to disease and increasing fragility, caused by exacerbating symptoms such as bony metastases and ascites.
• With a deteriorating condition the aim of treatment will be to maintain function, stamina, mobility and quality of life, in addition to controlling symptoms.
Box 12.2 Considerations when assessing deconditioning and exercise tolerance
• Cancer history, including site and stage of cancer
• Current treatment, drugs and side effects, time of administration
• Previous activity levels and current exercise tolerance, timed walk test
• Cardiovascular assessment, resting heart rate, CV potential
• Pulmonary function and oxygen saturation
• Muscle power 0–5 (Medical Research Council scale)
• Range of movement and flexibility
• Assessment of neurological problems
• Nutritional status and gastrointestinal status
Fatigue
• Cancer-related fatigue (CRF) is a complex multifactorial symptom affecting many patients in all phases of the disease.
• It has been described as a common persistent and subjective sense of tiredness related to cancer or to cancer treatment that interferes with usual functioning.
• 70–100% of cancer patients experience CRF (Lundh et al 2006).
Assessment of CRF
• The subjective sense of tiredness can be difficult to assess to get an accurate picture of how a patient is being affected.
• It is common in oncology and palliative care.
• The NCAT Rehabilitation Pathways (2009a, b) for Fatigue and Energy Management provide a framework for evaluating the effects of CRF. It is based on a Visual Analogue Scale of 0–10, 10 being the worst fatigue, with a score of 4 and above requiring specialist multidisciplinary intervention. Scores below 4 should be informed about coping strategies.
• The International Classification of Diseases has developed criteria to aid CRF diagnosis (Box 12.3).
• Fatigue is also a common symptom of depression and if suspected should be referred for appropriate assessment.
• Fatigue measurement tools are essential to assess both the fatigue itself and outcomes of interventions.
• Effort is required to complete the assessment tasks. In the palliative setting a shorter scale may be more appropriate.
• There are a range of commonly used outcome measures for measuring fatigue (Appendix 12.3).