The role of the Physiotherapist in Palliative Care for people with Lymphoedema
Original Editor - Your name will be added here if you created the original content for this page.
- 1 Introduction and Learning Outcomes
- 2 Overview of Palliative Care
- 3 Overview of Lymphoedema
- 4 Lymphoedema - Treatment and Management
- 5 Physiotherapist Role
- 6 Competency Framework and Current Guidelines
- 7 Conclusion
- 8 References
Introduction and Learning Outcomes
Welcome to this online learning resource focussing on “The role of the Physiotherapist in Palliative Care for people with Lymphoedema”. This has been designed by a group of fourth year Physiotherapy students from Queen Margaret University as part of the “Contemporary and Emerging Issues in Physiotherapy” module.
This learning resource is for individual study (although there are opportunities for group/paired discussion in some sections if you are completing this alongside other people). The resource has been developed for final year Physiotherapy students and new graduates to prepare them for work in the health service. From our own experience and discussing with expert clinicians, the role of a physiotherapist in lymphoedema and palliative care is rarely covered throughout university. Furthermore, only a select few students will gain palliative care experience during their placements. Hence this learning resource is designed to provide students and new graduates with essential information that they can use throughout their clinical practice.
Overall the resource should take 10 hours to complete. The learning resource will cover a range of topics including:
- Overview of palliative care (1.5 hours)
- Overview of lymphoedema (2 hours)
- Lymphoedema - treatment and management (3 hours)
- Physiotherapist's role (2.5 hours)
- Physiotherapy competency and guidelines (1 hour)
Throughout the resource there will be a variety of learning activities, including quizzes, reflections,additional reading and videos. These will be clearly identified and sign-posted so you can't miss them!
The aim of this page is to present a learning resource for final year physiotherapy students and new graduates to develop their knowledge and understanding of:
- The role of a physiotherapist in the management of people with lymphoedema
- The implications for physiotherapy practice when managing people with lymphoedema in a palliative care setting
Learning outcomes are set in relation to Bloom's Taxonomy - as this learning resource is designed for final year students and new graduates, the outcomes are mostly set appropriately at higher levels of the taxonomy.
By the end of this wiki you should be able to:
Activity: see the box below for the first activity of this learning resource.
Once you have completed this reflection (do not worry if you do not know much about the topic, that's what this resource is for), progress onto the next section where the history and service delivery of palliative care will be discussed.
Overview of Palliative Care
Definition and history
This section will discuss the what palliative care means and how this service was developed. Prior to beginning this section, take a moment to think about the following:
The World Health Organisation (WHO) defines palliative care as an "approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual" .
Aims of palliative care:
- To maintain quality of life until death
- Provide relief from pain or other symptoms which may cause distress
- Help patients to live as actively as possible
- Help family members to cope during a patient’s illness and during their own bereavement
- Integrate spiritual and psychological aspects into a patient’s care
- Be applied early and in conjunction with other therapies
As the primary aim of palliative care is to help alleviate pain and suffering, it is important to understand that pain is multidimensional - consisting of physical, emotional, spiritual and social components. Cicely Saunders (the founder of palliative care) referred to this as “total pain”. This concept of pain allows us to have a wider, more holistic approach to care for patients.
The image here outlines the components of pain and how they affect the patient.
The above section has given an overview of the definition and aims of palliative care. It is important to note that pallitive care places a strong emphasis on the 'multidimentional' experience of pain. This multidimentional focus ensures that assessment and treatment targets all needs of both patient and family. The next section will discuss the history of palliative care in more detail.
Hospices in the UK and Ireland have been around since the 1900s, however, they were few in number and run by religious foundations to provide care to the poor. The patients in these hospices received excellent nursing and spiritual care but medical input was minimal as it was believed then that the doctor’s role was to cure.
During the 1950s, there was considerable professional and public interest in cancer but the main focus was on curative treatment. Patients who were considered terminal and were dying from cancer were overlooked and were told to go home, as there was nothing that could be done or were scattered in various hospital wards, abandoned by doctors.
In the post-war years, a shift began to emerge in the published work with new studies showing both the clinical and social aspects of care for patients who were dying from cancer. This work in oncology helped to shape the worldwide development of palliative care.
Cicely Saunders may be recognized as the founder of the palliative care movement around the 1970’s.
Having trained as a nurse and then a social worker, in 1959, Saunders qualified in medicine and began working in St. Thomas’s Hospital in London.
In 1960, Saunders focused her attention on patients who were in the final stages of cancer, especially those patients with complex problems from the point of view of pain and general distress. Her research and writings were built on the individual experiences of her patients and by 1967 she had collected data for 1100 cases, where she described the physical and mental suffering of each patient. Saunders inspired the concept of total pain which includes physical, emotional, social, mental and spiritual components and believed in constant pain management to relieve suffering.
In 1967, Cicely Saunders opened St. Christopher’s Hospice in London which was the world’s first modern hospice. Here, she brought together large numbers of patients with terminal illness and staff to take care of them. The hospice quickly became an inspiration and established itself as a centre of excellence, giving equal importance to clinical care, education and research. Research was conducted surrounding the topics of pain control and administation of strong opiates to relieve pain. These clinical and organisational studies went on to play a major role in the advancement on palliative care.
The success of St. Christopher’s Hospice soon became a catalyst for the development of hospices in the UK. During the 1980s, about 10 new hospices were opened a year, some were funded by the NHS and others were privately or charity funded.
There was also a development among hospitals and in 1976 a terminal care team was established in St. Thomas’s Hospital, London. Between 1982 and 1996 the number of hospitals with a multidisciplinary palliative care team or a specialist nurse increased dramatically from 5 to a staggering 275.
During this time, two well-known UK charities also assisted in influencing change. The first of these charities was the MacMillan organisation which was founded in 1911. During the 1970s the organisation went through a period of phenomenal expansion. The organisation became more involved in palliative care and supporting specialist professional posts, academic positions and service development.
The second charity is the Marie Curie Memorial Foundation, established in 1948. This foundation was involved in creating a domiciliary nursing service for patients with cancer. It created nursing homes and ran a laboratory-based research programme. During the 1980s when new hospices were opening across the UK, the Marie Curie nursing homes evolved into specialist palliative care centres and the charity supported more research and educational activities in palliative care.
By the 1990s there were over 1000 specialist Macmillan nurses and 5000 Marie Curie nurses working across the UK in palliative care.
By 1987, palliative medicine was established as a subspecialty of general medicine and in 1995 the specialty of palliative care was formally approved.
It's time to test your knowledge about the history of palliative care - take 5 minutes to fill in the spaces where the '?' appear in the diagram below.
By undertaking this quiz you are working towards the achievement of the learning outcome related to discussing the "origins of palliative care".
Causes of death
This part of the resource will briefly look into the causes of death and how this relates to current health care practice. Before reading on, take a moment to consider the following:
When looking at who needs palliative care, we need to look at epidemiology and the causes of death across the world. Epidemiology is important when planning health services as it can provide information about disease and symptom occurrence to guide healthcare needs. This may include the need for a heightened focus on palliative care provison.
It is a well known fact that the population of Europe and other developed nations are aging due to the advances in healthcare and lifestyles. This however means that the pattern of diseases is changing and more people are living with chronic conditions.
In 2013, UK life expectancy was estimated at 71 years for males and females, this is an increase of 3 years from the life expectancy in 2000. This is furthermore predicted to rise into the late 80s by the year 2030.
Based on the statistics above, it is clear to see that people are living longer and the health service has to adapt in order to care for these individuals with multiple long-term conditions. These chronic conditions such as heart disease, stroke and chronic obstructive pulmonary disease, each present with their own specific symptoms, provide a wide range of complex problems for healthcare professionals. These conditions may lead to patients requiring palliative care and therefore, the healthcare service must adapt in order to meet this demand and provide adequate care for both patient and family.
The following graph shows the causes of death worldwide.
Think back to the reflection at the beginning of this section - does the graph match what your thoughts were? Do you find any of the causes of death surprising?
This is only a broad reflection of the figures as the causes of dealth vary among countries at different levels of economic development. Future projections, for example the life expectancy predictions which have been discussed may aid the planning of health services and the knowledge and skills clinicians will require in order to meet the needs of future populations.
This section should have provided you with an insight into the causes of death and life expectancies which impact the way that health care is delivered.
This section will discuss in further detail how palliative care is delivered in the current healthcare system. This section again links to the achievement of learning outcome number 1 surrounding how palliative care is delivered.
Since the inception of the modern hospice and palliative care movement led by Cicely Saunders, palliative care has continued to evolve, has developed into a medical specialty and is now integrated into mainstream medicine in many countries.
Historically there was an emphasis on curative treatment with end of life care only being implemented when treatment had failed and there was nothing more to be done. The image below depicts this -
However, as healthcare has evolved a newer concept has emerged, it is now replacing the dated older model. Palliative care should improve the quality of life of people suffering with life-threatening conditions, therefore, a realistic dialogue between patients, family and professionals should be introduced earlier in the disease trajectory
This is illustrated in the image below which shows the new concept of care. Active treatment and palliative care should be a seamless process through a disease trajectory from the point of diagnosis or at any point along the trajectory.
However, this does not always happen, due to differences between countries and societies. There is a strong bias towards a curative approach in modern medicine, especially in high-income countries where curative treatments may have priority ahead of palliative care. Due to the aging population in developed countries, the burden of disease on healthcare will continue to increase, challenging the knowledge and skills of professionals. With the advances in treatments for cancer and other conditions, patients are living with more co-morbidities and palliative care services must be prepared to provide care over longer periods of time throughout the disease trajectory.
Now that you have read the background information about palliative care and how it is delivered, please take the next 15 minutes to watch this TEDx talk by Dr. Timothy Ihrig about palliative care. Some of the facts in this video represent America but the key message is applicable regardless of the country.
When you are watching this, consider what you have learnt so far from this resource and how that relates to his points. Furthermore, take note of what you feel are the main points from the talk. Below the video a short summary of the key messages is provided.
We hope you found this TEDx talk useful to sum up and consolidate some of the facts about palliative care that have been discussed so far. Overall this talk emphasises the need for a shift in the current service provided to a service that is about enhancing the quality of life. In order for this shift to occur, clinicians must engage in conversation with their patients which will allow them to understand what is important to them. This will then alter the care and treatment given.
He states, “this is not about dying, this is about living”. Although palliative care is often associated with death, it is important to remember that patients are still able to fulfill active lives whilst receiving palliative care. Furthermore, palliative care can often be associated with the elderly; this video ensures we understand that this is not always the case; palliative care is a service to provide a better quality of life regardless of age.
Finally, we felt the take home message from this video was about ‘meeting patients where they are at now’ – this involves tailoring assessments, treatments and goals to the current situation of the patient and what their needs are at that time. This is important to remember and will be discussed in further detail at a later on where the palliative assessment and treatment is covered.
Where care is provided?
By now you should have an understanding of the history of pallitive care and the design of its delivery. Now the resource will go on to discuss where this care is provided which will further your knowledge surrounding 'service delivery' - this again links to the achievement of learning outcome number 1.
Prior to starting this section, take a moment to consider the following reflection:
Hospices are probably the most well known setting for palliative care, however palliative care takes place in multiple settings that people often do not think of. Hospices can be a ward or unit within a hospital or can be a stand-alone service. Hospices in the UK are generally stand-alone services with the aim of alleviating disease or therapy-related discomfort and stabilising the status of patient by offering psychological and social support. Cicely Saunders once said that hospices should be a welcoming environment and have a sense cheerfulness and peace.
Hospital palliative support teams – Provide advice to patients, their family, carers and other clinical staff. The team provide education and liaise with other services both in and out of hospital. An aim of the team is to alleviate multiple symptoms patients may have - this may be done by prescribing directly or will provide advise regarding symptom management.
Home care teams – Provide specialist direct care to patients in their home where they also support their families and carers. The team may provide specialist advice to GPs, nurses or other clinicians involved in the patient’s case. There is good evidence to show the benefits of home specialist palliative care compared with usual care.
Outpatient services – This service is available for patients who live at home but are still able to attend clinics. These services may be offered from a hospital or inpatient palliative care unit. This service can help to introduce patients to the palliative care process earlier where advanced care planning can be put in place. Unfortunately there is little to no evidence on the effect of these services.
Day care centres – These are spaces in hospitals, hospices or the community which are specially designed to provide additional support to patients and their families. Usually patients who attend a day centre are already in the care of a home palliative care team. The nature of the service offered may vary depending on the patient’s needs, from medical/health orientated to more recreational or social services where complementary therapies may also be offered.
You should now have a clear understanding of where palliative care services can be delivered and what each location can provide for patients, family or carers.
Who provides care?
Finally in this section, the resource will discuss who is involved in the provision of palliative care.
In order to achieve the aims of palliative care which are to affirm life and help support patients to live as actively as possible until death, all four components (emotional, social, physical and spiritual) of care should be covered. This is achieved by the collaboration of professionals using a multi- and interdisciplinary team (MDT and IDT) approach. The professionals involved in the MDT is likely to include specialist palliative nurses or physicians. However, depending on the service and needs of the indiviual other professionals may be involved such as social workers, physiotherapists, occupational therapists, psychologists, pharmacists and religious officials.
Each member of the MDT should have the necessary knowledge and practical skills of assessing and managing patient’s symptoms, be able to identify changes in the patient’s condition and be involved in the patient’s management plan. Care is offered based on the patients needs, therefore effective team work and co-ordination of support is essential. Care is focused on controlling pain and other symptoms, this is based on the needs of the patient at that time (this correlates to what was discussed in the TEDx video earlier), not on the disease prognosis, hence professionals must be flexible and able to adapt to these changing needs.
This image below shows how the MDT collaborates with the patient and their family. The patient is always at the centre of care, closely connected to their family and friends with the 4 components of care included.
The above section has discussed the history and service delivery of palliative care which links directly to learning outcome number 1. Please see below for a summary of key points to remember from this section.
As palliative care is an area which very few students and new graduates have experience in, we hope that this section has provided you with a detailed insight into this specialty. Moreover, we hope that this new knowledge and better understanding will help you feel more prepared for future practice.
Before progressing onto the next section of this wiki, please ensure you have taken the time to answer all the quizzes and understand the key points.
By now you should have achieved learning outcome number 1 –
“Describe the origins of palliative care and discuss the key features of palliative care provision”
Overview of Lymphoedema
This section of the wiki will aim to provide an overview of:
- The pathophysiology of lymphoedema
- The two types of lymphoedema - primary and secondary
- The four stages of the condition
- Clinical features that may present (physical and psychological)
- Two of the main leading causes related to lymphoedema - cancer and infection
- Epidemiology regarding the condition
By the end of this section you should have achieved learning outcome number 2 -
"Discuss the background of lymphoedema and describe the key presenting symptoms".
There will be quizzes and reflections throughout this section to challenge your thinking and reinforce your learning.
Epidemiology focuses on why diseases or conditions develop in different societies and how common the occurence is. The prevalence is the volume of people who are 'at risk' of having the condition at the same time. Finally, the incidence is the portion of new people that have acquired the condition over a specific period of time.
The epidemiology regarding lymphoedema isn't widely reported because it isn't always a notifiable disease. However, the condition is becoming more common and the cost of healthcare required can put financial strain on the NHS. Therefore, it is important to understand the prevalence to help improve current and future healthcare and disease management. This will assist healthcare professionals cope with the increase strain of this condition on future service delivery.
- A study surveyed 308 centres (2743 people) in Spain and found that 36.8% suffered from primary lymphoedema. Of the 36.8%, 2% had acquired it at birth, 30% during adolescence and 68% were older adults (see pie chart 1).
- Approximately 90% of people with lymphoedema are affected in their lower body, 9% are affected in the upper body and the remaining 1% are affected in the genital region (see pie chart 2).
- Lymphoedema occurs in approximately 240,000 people in the UK, older adults are more susceptible than the younger population.
- Rockson and Rivera mention that 1.15 in 100,000 people under the age of 20 will acquire primary lymphoedema.
- Undergoing surgery as part of breast cancer treatment is one of the most frequent causes of developing secondary lymphoedema. 1 in 5 patients will develop this type of lymphoedema 6 months after receiving the surgery..
- Hampton studied a population of 600,000 people over the age of 65 and concluded 1 in 200 people had chronic lymphoedema. 50% of these people had a reduced quality of life and hospital care cost the NHS £2300.
- Ridner discussed the incidence rates of cancer survivors developing lymphoedema. They reported the findings of a study focused on a population of 287 breast cancer survivors. The study concluded 6 years after receiving treatment 48% of the survivors had upper limb swelling at least once and 34% had clinical symptoms of chronic lymphoedema.
- One third of females with damaged axillary nodes combined with radiation will develop lymphoedema. This is supported by a study that assessed 744 patients who were treated for breast cancer in British Columbia. 5% of those who had axillary surgery developed lymphoedema, when radiotherapy was provided in addition to this the percentage increased to 30%
- Cellulitis is a one of the leading causes in developing lymphoedema. In 2003-2004 there were 45,522 cellulitis admissions reported by the NHS Institue for Innovation and Improvement, this again places a large strain and financial cost on the health service.
From the statistics above it is clear that lymphoedema is a common issue that places a large burden on healthcare, however it is not widely covered during university studies, therefore many new graduates and final year students remain unaware of the scale of the issue.
The lymphatic system is part of the body's immune system that plays a role in fighting harmful cells, for example, bacteria. It consists of lymph fluid, lymph nodes, lymph vessels and lymph tissue.
Lymph tissue insulates and protects the lymphatic system from damaging cells. Lymph fluid is protein rich and contains infection-fighting white blood cells. It circulates throughout the lymphatic system and is formed when interstitial fluid is collected through lymph channels (vessels, ducts and capillaries). Lymph is primarily made up of a white watery substance and flows unidirectionally towards the heart to provide cells with oxygen.
The main lymphatic functions:
1. Helps immune system respond to the body
2. Redistribution of fluid in the body
3. Lymph carries proteins, solids, and liquids away from tissue space
a. Remove waste products from interstitial space (between all body tissue) 
b. Bacteria, toxins and foreign bodies are removed from tissues
4. Controls the flow of large molecules around the body
5. Controls tissue fluid homeostasis to maintain the structure and functional aspects of tissue.
Lymph nodes tend to be found in clusters ingrained within adipose tissue (contains fat cells). Their shape and size varies depending on gender and where the nodes are located in the body. There are approximately 600 to 700 lymph nodes located around the body, specifically under the arm, in the abdomen, groin and neck. Their role involves receiving lymph fluid via afferent vessels and transporting it around the body using specific lymph channels located on left and right sides. The fluid then passes through superficial primary lymph vessels (that drain the skin) and is emptied into deep secondary lymph vessels (which also contains drainage from internal organs). Adequate flow of lymph fluid is dependant on muscle contractions and an efficient respiratory system, for example, exercise.
Take a couple of minutes to watch the video below which gives a good overview of the lymphatic system and should help to visualise the facts mentioned above.
Examples of lymph nodes located in the upper body include: axillary; lateral; subscapular; pectoral; upper and lower; central; infraclavicular; subpectoral and interpectoral nodes. Some of the lymph nodes located in the lower extremities include: inguinal; superficial inguinal and the intercalated nodes. As stated above, there are a number of lymph nodes located in the abdomen and pelvic areas, for example, iliac; lumbar; gastric; pancreaticosplenic; mesenteric; hepatic and rectal lymph nodes.
Lymphoedema occurs when the lymphatic system becomes blocked from localised fluid retention and tissue swelling within the body. This happens when the function of the lymphatic system is compromised in some way. Lymph pathways are unable to exchange nutrients effectively within the interstitial spaces, causing a build up of excess fluid. Upper and lower extremities are affected depending on which area of the body is damaged. The cause of onset determines whether the affected person has either primary or secondary lymphoedema.
Activity - take 10 minutes to undertake the following quiz and ensure you understand the key points from this section. The answers can be found throughout the above text.
Types of lymphoedema
Approximately 1 in 6000 people develop primary lymphoedema. This form of lymphoedema isn’t inherited through family history and wouldn’t be passed onto future generations. However, people can develop primary lymphoedema in relation to other genetic and congenital abnormalities where the lymph nodes or lymph vessels don't develop properly. Currently there is not a large body of evidence regarding the causes of primary lymphoedema. Future research is required to further investigate developmental causes to ensure effective treatments are provided.
Primary lymphoedema can be idiopathic, intrinsic or spontaneous. Idiopathic means there is no know cause, intrinsic results from an abnormal lymphatic system and spontaneous means the condition has developed on its own without any interference.
There are three classifications depending on the onset of symptoms:
Secondary lymphoedema is more common than the primary form. The lymphatic system is damaged due to an external cause compromising the function of the lymph nodes. Consequently, swelling accumulates in the affected part of the body.
Causes of secondary lymphoedema include:
- Malignant tumours - the presence of cancer tumours can block the flow of lymph fluid
- Surgery (cancer and non-cancer related) – increases the risk of disturbing the function of lymphatic pathways
- Radiotherapy - destroys cancerous tissue but can also damage healthy lymph nodes
- Infections – contributes to increased swelling in the affected area
- Inflammation – contributes to excess fluid build up in the affected area
- Obesity – increased the pressure on the lymphatic system that could ultimately damage lymph nodes
- Disease - for example, venous, joint, diabetes
- Trauma - lymphoedema can occur following severe trauma, for example, compound fractures
In more developed countries malignancy and the treatments associated with the condition are the main roots of cause for acquiring secondary lymphoedema. Although the treatments have a number benefits, their outcomes can lead to disruption of the lymphatic system. If a patient receives radiation treatment in addition to cancer surgery, they are at a higher risk of acquiring lymphoedema.
In developing countries the most common cause of secondary lymphoedema is filiariasis, a parasitic infection with filarial worms. It commonly occurs in areas of poverty where there is poor sanitation and diseased water. An infected female mosquito bites the human and a parasite enters the lymph vessel causing lymph vessel paralysis. The condition occurs in approximately 120 million people worldwide. The physical and psychological effects of filiariasis intensify poverty because those affected become socially isolated and unable to carry out daily activities.
Causes of upper limb lymphoedema include:
- Trauma or injury – removal of lymph nodes during breast cancer surgery, upper body radiotherapy, burns, and scarring
- Cancer that has spread to the upper body compromising the function of the lymph nodes
- Following deep vein thrombosis (DVT) or high doses of intravenous (IV) drugs
- Reduced upper limb mobility as a result of an illness, for example, multiple sclerosis or stroke
Activity - take the next 15-20 minutes to undertake the following tasks. These will facilitate the achievement of learning outcome number 2 by consolidating your learning surrounding the types and causes of lymphoedema.
The links below will be used in the reflective activity:
Now you have an understanding of how lymphoedema occurs, this section will move on to discuss how the condition presents.
There are both physical and psychological effects of the chronic condition. Early diagnosis is vital to ensure the correct treatment is chosen.
- In the early stages pitting oedema occurs where the skin is pressed leaving an indent in the swelling. Elevating the arm creates a draining effect to reduce swelling
- Limbs can feel heavy and achy
- There is altered sensation, for example, pins and needles
- Reduced mobility and range of movement of the affected limb/s
- Pain and joint discomfort
- Skin changes, for example redness and increased temperature
- Nail discoloration
- Hyperkeratosis (thickening of the skin) and lymphangiectasia (dilated superficial lymph vessels)
When the condition affects the lower extremities, over time the affected person’s gait pattern is altered, leading to a higher risk of disability.
The pictures below show how lymphodema can appear in the lower limbs.
Figure 3 
Figure 4 
There are psychological effects associated with the condition as a result of changes to body image.
- Swelling and weight gain impact physical appearance that can affect one’s perception of how they look, consequently decreasing their self-confidence 
- People commonly detach themselves from social events with family and friends leading to social isolation
- Disturbed sleeping pattern
- Some people may feel they have a lack of support
- Financial concerns as a consequence of treatment cost and potential job loss/change
- Some cancer survivors that have acquired secondary lymphoedema feel that it can be a constant reminder of previously having cancer
- For those that experience unilateral lymphoedema, commonly different sizes of garmets have to be worn on each side of the body and oversized clothes have to be worn because items such as jeans dont fit the limbs. Psychologically this can largely impact the person because they may not feel comfortable with the way they look and therefore exclude themselves from public situations
Mason et al.conducted a systematic review of literature that looked at the psychosocial aspects related to lymphoedema. It was found that people with the condition experience anger, depression, anxiety and relationship issues. People can feel embarrassed having to wear different clothes due to compression bandaging, swelling and weight gain. Ultimately, there is an overall decrease in quality of life (QoL) from reduced social and leisure activities. The study concluded more research is required that focuses on improving specific psychosocial issues rather targeting QoL to resolve issues such as anger and depression.
Another study looked at the incidence, cost of treatment and complications of lymphoedema following breast cancer treatment. It concluded that 10% of the 1877 participant showed signs of lymphoedema 2 years after breast cancer treatment. A complication of the condition was the high medical costs for treatment. This lead to increased length of stay in hospital and ultimately reduced the patient’s QoL.
It is important for health professionals to recognise and fully understand the psychological and psychosocial implications for each individual patient to ensure person-centred care is provided. Communication and appropriate referrals to other health professionals is important in overall management of the condition, for example social workers and psychologists.
Below is a summary of the key points to remember from this section:
Stages of lymphoedema
This section will introduce the stages of lymphoedema. There are 4 stages which are discussed in the table below. Lymphoedema is a chronic and incurable condition so treatment strategies focus on reducing disease progression through the stages. For example, management may focus of swelling reduction and infection prevention.
The picture below shows how each of the above stages appear in the lower limb.
Finally in this last sub-section you will learn about two of the leading causes of lymphoedema - cancer and infection.
Lymphoedema following breast cancer surgery is the highest overlooked cause of secondary lymphoedema. Harmer states approximately 28% of people will acquire lymphoedema after receiving this treatment. The procedure involves removing one or more lymph nodes located under the arm, leaving fewer lymph nodes to drain all the lymph. Continually working under high pressures eventually causes the remaining lymph nodes to become damaged and lymph leaks into the lymph vessels. Consequently excess fluid builds up in the affected area.
Cancer Research UK discusses the vicious cycle between cancer and the body’s immune system. Cancerous cells are destroyed by the immune system and treatments for cancer. However, the condition can weaken the immune system if lymph nodes are blocked by cancerous tissue and unable to function properly.
A combination of surgery and radiotherapy treatment leads to a higher risk of acquiring secondary lymphoedema. Radiation therapy aims to stop cancer from coming back by using high-radiation energy to destroy cancerous cells. It either occurs before surgery to reduce the size of a tumour, or after surgery to abolish the remainder of the tumour. Lymphoedema can occur as a result of this treatment when the function of the lymphatic system has been comprised and fluid isn’t drained away.
Infection is a key issue commonly related to lymphoedema. It either results from swelling or causes it to develop. Lymph nodes help fight infections but when they are damaged infections can develop quicker. Infection usually develops following a break in the skin, for example a cut. It is important patients receive treatment quickly to prevent the infection becoming acute and spreading within the affected area. A common antibiotic used to treat cellulitis is penicilin. The Lymphoedema Support Network defines cellulitis as “acute spreading inflammation of the skin and subcutaneous tissue”. It causes the skin to become warm, red, swollen and painful with onset either sudden or progressing over a few hours. If the lymph tissue is damaged there is added strain on the lymphatic system. In an infected limb, the inflammatory process attracts fluid which results in an increase in swelling. Consequently, lymphoedema is exacerbated during this period inflammation.
75-90% of cellulitis occurs in the lower body and is caused by bacteria entering inflamed or broken skin. Al-Niaimi and Cox state that cellulitis is responsible for 3% of UK hospital admissions. This common occurrence puts financial strain on the NHS; therefore, infection prevention is a large part of lymphoedema treatment. There is a strong link between leg cellulitis and lymphoedema, where progression of the condition can lead to ulceration and septicaemia. Each cellulitis episode exacerbates secondary lymphoedema, which in turn increases the risk for a further infection episode. A Cochrane review found that a quarter of lymphoedema patients would acquire cellulitis. All of which discussed above emphasises the need for effective treatment and management of lymphoedema to prevent infection and hospital admissions - this will be discussed in more detail later in the resource.
Now it's time to get your thinking hat on...
By now you should have an understanding of the causes of lymphoedema, the presenting symtoms and leadng causes. Use the information provided in this section and in the link below to complete the following activity:
Well done, you have successfully completed this section of the learning resource! Now it's time to test yourself and put your newfound knowledge into practice.
Take approximately 15 minutes to complete the following quiz. The aim of the quiz is to answer all the questions correctly before the time runs out, good luck!
The aim of this section is to provide an overview of lymphoedema. It’s important to understand the background of how lymphoedema develops and the presenting symptoms associated with the condition so that clinicians choose the most appropriate treatment strategy.
By now you should have achieved learning outcome number 2 -
"Discuss the background of lymphoedema and describe the key presenting symptoms"
You should also feel comfortable discussing the following areas:
- Types and Stages of lymphoedema
- Clinical features
- Leading causes
The next section of the learning resource will focus on discussing the physiotherapist’s role in managing lymphoedema and critically analyses a range of available treatments. Hopefully by now you should have a clear understanding of the scale of lymphoedema and why effective treatment and management is so important.
Before progressing onto this section, please ensure you have taken time to complete all the activities above.
Lymphoedema - Treatment and Management
This section will discuss the treatment and management options for people with lymphoedema. By the end of this section you should have achieved learning outcome number 3 -
"Critically evaluate the role of the physiotherapist in the treatment of lymphoedema with reference to current literature"
Throughout the section a number of learning activities including reflections, quizzes and a case studies will be used to help consolidate your learning. Additional reading links will also be provided throughout to expand on what is included in the resource.
The Chartered Society of Physiotherapy (CSP) produced a document outlining the background and treatment of lymphoedema. This document states that patients will undergo 3-4 weeks of intensive therapy, followed by lifelong monitoring, which includes self-management and 6 month reviews. The need for early access to specialist physiotherapy intervention in order to prevent serious complications is also highlighted.
Decongestive lymphatic therapy (DLT) as discussed by the CSP is viewed as the gold standard of care for lymphoedema.This treatment approach is effective and significantly reduces the percentage excess limb volume as well as improving quality of life .
Decongestive lymphatic therapy encompasses four main components;
The treatment of lymphoedema should be specifically tailored based on the site, severity and complexity as well as their psychosocial status. The success of treatment does not solely rest on the therapist; patients and carers must play an active role from an early stage.
Alongside the physical difficulties that people with lymphoedema face - emotional and social implications may also arise. Evidence has suggested that through specific management and targeting of the physical symptoms, these psychosocial issues can be reduced to enhance the individual’s quality of life.
The management of lymphoedema is split into intensive and maintenance stages, both of which have very different approaches. The goals during the intensive stage of therapy are to reduce and control the swelling, maintain skin quality and educate the patient in order for them to reach a stage where they are ready to progress into the maintenance phase of treatment. This is achieved through a number of approaches aiming to reduce the load, decongest the lymphatic system, encourage system function and stimulate drainage through various routes.
Once swelling is bought under control patients will progress to the maintenance stage. During this stage people with lymphoedema are educated to self manage their condition and will be reviewed less frequently by a specialist.
Over the next four sections of this learning resource you will learn about the different components of DLT with reference to the literature which supports their use.
Prior to moving on, take 5 minutes to complete the following quiz (the answers can be found in the text and additional reading above). This quiz will ensure you have the basic knowledge of DLT before each component is discussed in further detail.
This section will discuss the first of the four elements of DLT known as compression therapy.
Compression therapy consists of two main methods – multilayer lymphoedema bandaging (MLLB) and compression garments. Overall, compression therapy increases lymphatic drainage, reduces capillary filtration, promotes fluid movement to less compressed areas of the body and improves the action of the venous pump. Furthermore, bandaging aims to improve the shape of the limb, soften fibrosclerotic tissue, support and improve skin condition.
Once no further benefit is being obtained from compression bandaging during the intensive phase, patients should be managed by compression garments for long-term maintenance. MLLB may also be used as part of long-term management if compression garments are not suitable .
The combined treatment of bandaging followed by compression hosiery has been found to yield better results for reduction of moderate to severe lymphoedema, which was maintained for at least 6 months, compared with hosiery alone . These results came from a relatively large randomised controlled parallel-group trial. Hence the International Consensus recommends this as the optimal course of treatment for people with lymphoedema.
The resource will now go on to discuss the stages of compression therapy in further detail with reference to the available evidence. This will facilitate the achievement of learning outcome number 3 (please see the introduction section to remind yourself of this).
Compression bandaging is considered if the patient presents with any of the following factors:
- Fragile, damaged or ulcerated skin
- Distorted limb shape
- Limb too large for compression garments
- Areas of tissue thickening
- Pronounced skin folds
There are a number of contraindications stated below:
- Severe arterial insufficiency
- Uncontrolled heart failure
- Severe peripheral neuropathy
Once indications and contraindications have been considered, the health professional is required to make a decision regarding the course of treatment. Based on the patient's presenting symptoms, condition and medical history, they may require slightly modified treatment. The following flow chart visualises the decision making process that occurs at this stage:
The bandages used for MLLB are inelastic which result in high and low pressures exerted during movement and rest respectively. Elastic bandages produce less variation of pressure; these may be indicated if patients are immobile, have venous ulceration, lymphatic or venous disease or if the expected time of application is longer than normal.
As with most treatments, MLLB can be adapted to suit the patient needs by either adjusting pressure, frequency of reapplication, bulk of bandage and type of bandage. If pressure is not applied correctly venous and lymphatic flow can be compromised, therefore the proximal movement of fluid is reduced and swelling may present in the extremities. When applied to the lower limb, care must be taken to ensure that the patient is still able to wear shoes during treatment as normal gait pattern is encouraged to maintain an effective calf and foot muscle pump.
Pressure applied is calculated using Lapase's Law:
P = pressure under the bandage (in mmHg),
T = bandage tension (Kgf)
N = number of layers
C = limb circumference (cm)
W = bandage width (cm)
The basic principles of MLLB have been discussed. The following two videos show the application of MLLB to upper and lower limb lymphoedema. By watching these, you should gain a clearer idea of the appearance of MLLB and how it is applied by a specialist physiotherapist or other health care professional.
Bandaging a lymphoedema arm: (approx. 10 mins)
Bandaging a lymphoedema leg: (approx. 10 mins)
MLLB has been discussed, however more recently, a new bandaging system known as Coban 2 has been developed which can be used an alternative to MLLB. MLLB consists of a thick padding layer covered by multiple compression bandage layers, however Coban 2 differs and only consists of a comfort layer and a compression layer that cohesively bond together. Coban 2 bandaging eliminates the need for multiple thick layers, resulting is a much less bulky appearance and allowing the patient more mobility and freedom.
Lamprou and colleagues conducted a prospective randomised controlled trial comparing Coban 2 with traditional bandaging methods in the treatment of lower limb lymphoedema. The results of this study found Coban 2 to be equally as effective in reducing limb volume.
Franks and colleagues studied the use of Coban 2 in arm and leg lymphoedema. Again this study supported the use of Coban 2 in the effective management of lymphoedema with the lower limb showing a greater reduction in swelling.
Although both of the above studies had relatively small sample sizes (40 and 24 participants respectively) resulting in low statistical power, they both showed encouraging results for the use of the new bandaging system.
A multicentre randomised controlled trial with 82 participants investigating the frequency of application of Coban 2. Results found constant therapeutic effect was maintained when bandages were reapplied every four days. Compared with MLLB, which requires reapplication daily at certain stages of treatment, the Coban 2 bandages allow patients to have more freedom and independence.
As discussed the evidence for Coban 2 is encouraging, however to fully evaluate the efficacy of the new system larger high quality studies are required.
This next video shows the application of Coban 2 bandaging and explains some more information about this new system.
Activity - Take 5 minutes after watching this video to note down the differences between the two types of bandaging systems.
Coban 2 bandaging: (approx. 10 mins)
Now that compression bandaging has been considered, this wiki will now move on to discuss the use of compression garments which are used for the long-term management of limb shape and swelling.
Compression garments will be considered when a patient is reaching the end of the intensive phase of treatment once regular limb shape has been restored and the patient’s skin is fully intact and robust enough to tolerate the use of garments. Garments require precise measurement as they are hand-made to measure specifically for the individual patient.
Although garments are important in the management of lymphoedema, patient and clinician must come to an informed decision regarding the appropriateness of this treatment modality.
Doherty et al. explains a number of factors that should be considered when assessing for compression garments (see image below). Once these have been considered and the patient is deemed appropriate for compression garments, meaurements will be taken by a qualified health professional, which may be a physiotherapist.
Additional reading: Take 10 minutes to refer to the Best Practice for the Management of Lymphoedema pages 40-41 where you will find more information about fitting and measuring for lymphoedema compression garments.
Once the progression from bandages to garments has been made, swelling and other symptoms must be monitored. If swelling is not controlled within the first three months of wearing compression garments, clinician and patient should consider further intensive therapy using MLLB in order to bring the swelling under control.
Garments are either constructed as a flat knit or a round knit. Flat knit are knitted as a flat garment then joined at the seams, these are generally thicker and firmer. Round knitted garments are viewed as more aesthetically pleasing, as they are thinner than flat knit and are continuously knitted cylindrically without any seams.
Once measurement and construction of the garment is completed, the health professional will assess the garment for fit and check that the patient or carer is able to apply and remove the garment correctly. Advice regarding the care at home will be provided in person and leaflets may also be given to the patient. If garments are poorly fitted, the swelling may not be contained and damage can occur to the tissues. This could result in discomfort and reduced tolerance leading to patients being unwilling to use compression hosiery as a long-term management option.
As well as limb compression garments, if patients have trunk or breast lymphoedema garments or specialised bras can be provided.
Activity - before progressing to the next section please take 15 minutes to check your knowledge:
By now you should have a clear understanding of the role of compression therapy in the management of lymphoedema and the evidence to support it. The additional reading and YouTube videos should have provided you with more knowledge about modifications of MLLB, application of both bandaging systems and measuring for compression garments.
Ensure you are able to answer the questions in the quiz above (all answers are provided throughout the text and additional reading).
Below is a summary of the key points to remember from this section.
This section will discuss the role of skin care in the treatment and management of lymphoedema.
As a consequence of swelling, large skin folds can appear where infections may develop . Infections can also arise if the skin becomes damaged or broken, therefore adequate skin care to maintain the integrity and manage any problems that occur is fundamental in the care of people with lymphoedema.
At both intensive and maintenance stages, it is important to emphasise the need for a skin care regime to maintain the skin integrity.
During assessment, health professionals must inspect the skin condition using palpation and observation to check for any changes or damage. If changes have occurred these must be monitored and managed correctly.
Following assessment, the skin will be cleansed and emollients applied.
Washing removes dirt and bacteria from the skin, this is essential to prevent infection; however washing can remove the protective lipid layer that prevents water loss and protects the skin from infection. Therefore emollients are applied to re-establish this layer, thus preventing any further water loss and maintaining the protective barrier. Following cleansing of the skin, it is highly important to ensure the skin, in particular the skin folds are dried properly. If not, these areas will provide the perfect environment for infections and bacteria to develop.
Abrasive or scented soaps should be avoided and natural or pH neutral soaps are recommended. This is because normal soaps contain detergents, are often scented and include preservatives, which can all irritate or dry the skin.
As shown in the videos in the above section (Compression Therapy) emollients are applied prior to bandaging. These are available in various forms including, moisturisers, soaps substitutes or bath oils. Moisturisers area also available in different forms including creams, lotions and ointments. The Lymphoedema Framework recommends the use of ointments, which contain little or no water; this hydrates the skin better than creams and lotions.
The body’s natural response to sunburn is to increase blood flow to the affected area. For people with lymphoedema this will increase the load on an already impaired lymphatic system and may increase swelling. Therefore it is advised that people with lymphoedema take extra care to avoid sunburn.
Despite the treatment offered infections may still occur that must be managed by thorough close monitoring, skin hygiene, ensuring skin is dried following washing and an anti-fungal powder or cream applied until the infection disappears.
Although skin care is an integral part of lymphoedema management, some patients experience barriers that prevent adequate skin care and result in infections. James studied the perceived barriers to skin care, which included physical limitations, expense, poor understanding, anxiety and motivational issues. This indicates that health professionals play a large role in educating patients about the importance of skin care to facilitate self-management. Health professionals should be aware of these potential barriers and be able to overcome them through education and support.
The main principles of skin care have been discussed for intact skin, however as discussed a number of skin conditions or infections can arise. Take 10 minutes to undertake this additional reading from 'Intact Skin' on page 24, stopping before 'Cellulitis/Erysipelas' on page 27 of 'Best Practice Management of Lymphoedema'. This reading will provide you with additional information about how different skin conditions are managed in practice. It will also provide you with a description and picture of how the stated condition appears. This is particularly useful as final year and new graduates – you may be involved in the assessment or treatment of this patient group, therefore it is important that you have the knowledge to identify these conditions.
You have now reached the end of this section, at this stage you should understand the main principles of skin care and how these are delivered in practice.
Activity – take 5 minutes to complete the following quiz to test your knowledge before progressing. All answers can be found in the text above or throughout the additional reading.
Below is a summary of the key points to remember from this section:
This section will discuss exercise for people with lymphoedema. Based on new evidence, traditional beliefs about the effects of exercise on lymphoedema have been disproven.
MacMillan Cancer Support state that many individuals experience reduced quality of life following cancer treatment due to secondary complications, which can include lymphoedema. Despite the general well known benefits of exercise including reduced risk of chronic diseases and the positive impact it can have on mental health, studies report that cancer survivors often fail to return to their pre-diagnosis levels of physical activity.
Traditionally strenuous exercise was discouraged in patients with lymphoedema based on the belief that it may exacerbate the condition. However recent studies and systematic reviews contradict this statement.
Cancer Research UK provides an informative section on their website for people with lymphoedema.
Before progressing take 10 minutes to read through this page. By reading this information you will learn about how exercise influences lymphoedema and examples of exercises for different areas of the body. This is a useful resource as it is written in layman language, which is easy to understand by patients. This may also assist you as future clinicians to find ways to explain complex terms to your patients.
Now that you have read more about exercise and lymphoedema, the following table summarises some of the studies that have been conducted surrounding this topic.
|Study Title||Design||Participants||Intervention||Outcome Measures||Results|
|Effect of Upper Extremity Exercise on Secondary Lymphedema in Breast Cancer Patients: A Pilot Study||Pilot study||14 breast cancer survivors with unilateral upper limb lymphoedema||Progressive upper body exercise programme – 8 weeks vs. no intervention|| Arm circumference and volume
Medical Outcomes Trust Short From 36 – survey
| No changes in lymphoedema|
Physical, general and vitality components of QOL improved
|Exercise and Secondary Lymphedema: Safety, Potential Benefits, and Research Issues||RCT||32 breast cancer survivors with lymphoedema||Mixed type exercise programme – 12 weeks vs. no intervention||Bioimpedence spectroscopy and perometry||No changes – did not exacerbate lymphoedema|
|Weight lifting in Women with Breast-Cancer-Related Lymphoedema||RCT||141 breast cancer survivors with stable arm lymphoedema||2x weekly progressive weight lifting vs. no intervention||Severity of lymphoedema, number and Incidence of exacerbations and symptoms and muscle strength||No effect on limb swelling, reduced exacerbations and symptoms, increased muscle strength|
|Systematic Review and Meta-Analysis of the Effects of Exercise for Those With Cancer-Related Lymphoedema||Systematic review and meta-analysis|| Individuals with secondary lymphoedema
25 studies included
|Range of exercises||Lymphoedema and associated symptoms|| No effect on lymphoedema or associated symptoms|
Insufficient evidence for use of compression during exercise
|Exercise in patients with lymphedema: a systematic review of the contemporary literature||Systematic review|| Cancer patients with or at risk of lymphoedema
19 studies included
|Range of exercises||Lymphoedema development and exacerbations||No development or exacerbation of lymphoedema|
|Weight training is not harmful for women with breast cancer-related lymphoedema: a systematic review||Systematic review and meta-analysis|| Women with or at risk of developing breast cancer related lymphoedema
11 studies included
|Progressive weight training exercise||Severity and incidence of arm lymphoedema, upper limb muscle strength, BMI and QOL|| Increased strength without affecting arm volume or incidence of lymphoedema|
No effect on BMI
Potential to improve some elements of QOL
The studies in the table above used a range of different exercise modes, there is little evidence to recommend the optimal mode of exercise for people with lymphoedema; therefore larger scale trials are required to evaluate this. However, the most recent systematic review discussed that by giving people a choice over their exercise method promoted adherence to the programme.
Singh et al. also reviewed the use of compression garments during exercise. Unfortunately due to the range of effects that wearing compression can have during exercise, there was no definitive answer to whether compression garments should be worn or not. The authors suggest that this decision should be made on an individual basis considering factors such as stage, severity, and stability of lymphoedema and patient preference.
Evidence suggests that exercise supervised by a qualified professional i.e. a physiotherapist in the first instance - this will ensure correct technique and reduce injury risk.
It can be concluded from the body of evidence including large randomised controlled trials and recent systematic reviews that strenuous training, as previously thought does not lead to the development or worsening of lymphoedema. Despite showing little effect on lymphoedema, it is important to note the benefits that exercise has on individual’s strength, functioning and quality of life. These benefits outweigh any risks that were previously suggested.
To put this in relation to practice, physiotherapists and other health professionals should be encouraging patients with lymphoedema to undertake exercise programmes. Professionals should make individuals aware of the benefits that exercise can have on physical and mental wellbeing and reassure them that exercise will not worsen their lymphoedema.
Activity - take 15 minutes to think about the following case study. This can be discussed in groups if you would like to.
Mrs. X. is a 34-year-old lady with (R) upper limb lymphoedema who completed her cancer treatment 11 months ago. She independently manages her lymphoedema with skin care; self massage and wears a compression garment. Prior to her diagnosis – Mrs. X. attended a range of gym classes including high intensity training and strength-based classes’ 3x a week, as well as running at weekends. Mrs. X. tells you she would like to return to her previous level of activity but is concerned that exercise may make her lymphoedema worse. She asks you for advice about what exercises are safe for her to do.
- What advice would you give her?
- Can you think of any exercises that she could do?
Have a think about this yourself at first. However, if you are struggling refer to the Cancer Research UK document or this document which provide advice about what and how exercise should be undertaken with lymphoedema.
You have reached the end of this section. By now you should have an understanding of the types and how exercise is used in the treatment of lymphoedema and the evidence which supports this.
Below is a summary of the key points from this section:
Manual and simple lymphatic drainage
This section will discuss the final part of DLT known as manual and simple lymphatic drainage.
Emil Vodder came up with the method of manual lymphatic drainage (MLD) in 1936. He stated that MLD along with other techniques such as deep breathing and improved diet would play a key role in lymphatic conditions . This method of massage uses gentle strokes to enhance lymph drainage through lymphatic pathways. The treatment alone is not sufficient to reduce lymphoedema, however it is recommended that MLD is conducted by trained professionals in conjunction with the other components of DLT, which have been discussed previously.
Below the tables show the indications, contraindications and local contraindications of MLD.
- Slow repetitive movements
- Moves proximally to distally
- Aims to increase lymph drainage without altering capillary function
- Alter interstitial pressures by varying hand movements
- Incorporates breathing techniques (deep diaphragmatic breathing) to encourage drainage from deep abdominal lymph nodes and vessels
- Up to one hour daily
As well as MLD, another form of this treatment is known as Simple Lymphatic Drainage (SLD) - a simplified version of MLD that can be taught to people with lymphoedema or their carers to form part of a self-management programme. MLD can be performed for up to one hour daily, however SLD is performed for 10-20 minutes.
Prior to teaching SLD to individuals, health professionals must consider:
What does the evidence say?
MLD has been found to reduce limb volume, improve quality of life and lymphoedema symptoms in people with cancer related lymphoedema. However, this study had a number of flaws limiting its quality, indicating the need for further research in this area. When comparing MLD to SLD, Sitzia et al. suggests MLD to be more beneficial at reducing limb swelling. However these results were from a small pilot study and did not reach statistical significance.
A more recent systematic review evaluated the effects of MLD in preventing and treating breast cancer related lymphoedema. Overall the findings from this review were unable to support the use of MLD in the prevention or treatment of lymphoedema in this patient group.
Although the evidence discussed was unable to support the use of MLD and SLD to treat lymphoedema, the Lymphoedema Framework still recommend it as one of the cornerstones of decongestive lymphatic therapy. The framework suggests that despite the efficacy not being proven, MLD and SLD both have clear psychological and symptomatic benefits. Pyke discussed that massage can reduce fear and reassure patients that although their skin is painful and may be damaged it can still be touched.
Overall it can be concluded that further evidence is required to fully evaluate the benefits of MLD or SLD in the management of lymphoedema. The benefits may not reach statistical significance but the impact that MLD or SLD could have on an individual’s quality of life are important to consider. Furthermore SLD, although little evidence to support its use, allows the patient some independence as they are able to take some responsibility for the management of their condition.
You have reached the end of this section. You should now be able to discuss the role of MLD and SLD in the treatment of lymphoedema and discuss the evidence supporting this.
Activity - take 5 minutes to complete the following quiz. The answers are provided throughout the text above.
Below is a summary of the key points from this section:
This section has discussed the management options for people with lymphoedema, focussing on the 4 main cornerstones of decongestive lymphatic therapy.
The evidence base has been discussed along with the recommendations provided by the Best Practice for the Management of Lymphoedema Framework . It is important to note that the treatments discussed are not stand-alone therapies. Ideally, the treatment of lymphoedema should contain all components of DLT to manage symptoms and reduce complications.
The treatment of lymphoedema is a specialist skill, which requires additional training. However, based on our discussions with expert clinicians, it is important as students and new graduates to understand the principles of treatment so that they are aware of the reasons why their patients may be receiving certain treatments and are able to explain this to patients or family if required.
Despite relatively sound evidence base supporting the use of DLT as a whole, when looking into the separate components the quality of trials is not as reliable. As discussed there is a need for larger scale trials to fully evaluate the use of specified treatments in the management of lymphoedema.
Before progressing onto the next section of this wiki, please ensure you have taken the time to answer all the quizzes at the end of each sub-section.
By now you should have achieved learning outcome number 3 –
"Summarise and explain the physiotherapy management options for people with lymphoedema"
Physiotherapists help people to maximise their potential and maintain or improve their quality of life. In palliative care, physiotherapists have many roles.
- Symptom management
- Education and communication
- Rehabilitation and function
- Some psychological aspects of care
This section will provide you with the information required to achieve the final learning outcome - "Critically appraise the role of a physiotherapist treating lymphoedema in a palliative care setting compared to a non-palliative setting"
Assessment and Outcome Measures
This section will detail what is involved in an assessment carried out by physiotherapists in a palliative setting and the different types of assessment and outcome measures available.
Palliative and specialised palliative care services offer a multidisciplinary team (MDT) approach which was discussed earlier. Key principles must be applied to the assessment such as considering the patient as a whole person, focusing on quality of life rather than quantity. Management should be decided by the patient and there should be good communication for effective assessment and management. The assessment should involve a patient-centred approach in order to elicit the physical, social and psychological needs of the patient.
The palliative lymphoedema assessment aims to:
- Understand the patient’s main concerns, goals and priorities
- Help the clinician understand the main cause of and the mechanisms behind the swelling
- Understand the underlying condition and how quickly it is progressing
Oedema is a direct result of multiple factors relating to a terminal illness. It can be distressing for patients and a management challenge for health professionals. It is estimated that 5-10% of new referrals to palliative care have oedema but this is also thought to be underestimated. Heavy and swollen limbs can cause proximal pain while patients with active malignancy may experience neuropathic pain due to nerve compression. Up to 67% of patients experience pain as a result of oedema. For patients, lymphoedema may be seen as a constant reminder of their cancer or illness. The swollen limb is heavy and uncomfortable which leads to a reduction in mobility and function. All of which emphasie the importance of a detailed assessment to identify problems and effective management that focusses reducing the patients pain and other associated symptoms.
The assessment includes a full history of the oedema including the following areas:
All areas are combined with a history of the illness and medication to further explore the underlying causes. An examination is then carried out and baseline measurements are taken. This helps to plan the programme of care, assess the response to treatment, identify risks of potential complications and may show signs that confirm the cause of the oedema. Due to the nature of the disease patients priorities often change, therefore the assessment is ongoing and reviews of priorites and goals occur regularly. From the assessment, the priority will be to negotiate a care plan based on the patient’s problems and the best approach to alleviate these issues.
Holistic Needs Assessment
In 2010 the National Cancer Survivorship Initiative identified some key areas to deliver high-quality care for people with cancer in the UK. One of the identified issues was to develop a holistic assessment and personalised care planning. This was a shift away from the traditional thought of ‘one-size-fits-all’ when care planning. From here, the Holistic Needs Assessment (HNA) was developed.
A Holistic Needs Assessment (HNA) is an assessment tool specifically developed for cancer patients and should be used during every cancer patient’s care. It can make a large impact on a patient’s overall care experience and greatly improves outcomes through recognising and resolving any problems quickly.
The assessment is a process of collecting and discussing information with the patient to develop a clear understanding of the patient's individual needs and current self-management strategies. This holistic assessment is patient-centred as it focuses on physical, emotional, spiritual, mental, social and environmental factors. From here, an individual care plan is created specifically tailored to their needs .
It has been shown that having a HNA when patients are nearing the end oftreatment helps to identify areas to be discussed with a healthcare professional. The information from this discussion will then be used to develop a care plan with the patient.
The care plan is there to support the patient during and after their treatment and should include;
• Addressing any physical or everyday concerns
• Direction to local or national support groups
• Information about local Health and Wellbeing Clinics, educational events or self management courses available
• Referral to appropriate healthcare professionals for support
• Lifestyle advise/changes
• Information or referral to an appropriate physical activity programme
• Information or referral for advice on diet and nutrition
• Referral for psychological support
• Support related to work and finance concerns
• Support for spiritual needs
What is the evidence?
It was determined in 2009 that a surprisingly low less than 25% of people with cancer were offered a holistic needs assessment or care plan. Although many institutions and professionals are beginning to implement an assessment approach, there is still a long way to go before this is a national standard way of practice.
This link will direct you to the Holistic Needs Assessment and Care Planning document from Macmillan. Please take 5 minutes to refer to pages 5-8 of this document which outline the evidence on assessment and care planning. This will assist you to critically evaluate the current evidence.
The document concludes that while there is an abundance of evidence focusing on the needs of patients with cancer and the multiple assessment tools used, there is little evidence for the appraisal of the HNA. More research which looks into the experiences of people with cancer who have undergone the HNA process is needed to determine its value in clinical practice.
You should now have an understanding of how the holistic needs assessment was developed and the importance of this. The resource will now go on to discuss what outcome measures can be used in palliative care as these differ to that normally used in non-palliative settings.
An outcome measure is a tool used to measure the quality of delivery of patient care and indicator of whether an intervention has had any positive effect or not.
The use of an outcome measure as a tool can be very valuable during an assessment.
The main benefits are:
• Ensures the focus is on the patients specific needs
• When used effectively, it provides a structured assessment conversation allowing the patient’s worries to be prioritised
• Ensures all areas of assessment are covered
• Patients become familiar with the tool and it can be used by different healthcare professionals involved in their care
There are a range of outcome measures and assessment tools available to physiotherapists.
The most commonly used tools within a palliative setting include:
• Distress Thermometer
• Sheffield Profile for Assessment and Referral for Care (SPARC)
• Palliative Care Problem Severity Score (PCPSS)
• The Pepsi-Cola aide-memoire
Below is a summary of the key points to remember from this section, please ensure you are comfortable discussing these before progressing onto the next stage of this resource:
This section explains the challenges physiotherapist's face when treating and setting goals for palliative patients with lymphoedema.
The main aim of palliative rehabilitation is to set treatment goals that allow a patient to maintain or improve functions and delay disease progression for as long as possible. Losing functional ability can cause a patient to view themselves differently and reduces their independence, consequently this can impact their psychological well-being. Therefore, physiotherapists have an important role in helping patients maintain their independence and achieve other goals they may have.
Working as a physiotherapist within a palliative care setting can be very challenging as it requires not only an understanding of the patient's condition and the common physiotherapeutic treatment methods but also how to modify these treatments in relation to palliative goals. Goals need to be short-term and adaptable due to the ever changing nature of a palliative condition. Sometimes it is necessary to carry out a new assessment each time you see a patient due to this varying nature.
With regards to lymphoedema patients, physiotherapists usually work towards the goal of restoring ‘near normal’ limb shape and size. However, in a palliative setting this goal is often unrealistic, therefore, goal setting must be sensible and specific to the patient's individual needs. Goal setting with the patient should include close interaction with the physiotherapist and other health professionals involved in their care to ensure they are adequately educated in a range of self-management strategies. Acceptable palliative goals include, slowing down the progression of swelling and reducing other symptoms associated with lymphoedema .
Patients may have dramatically reduced physical capacity. If their illness has compromised neurologic structures, they may be plegic or paretic, and therefore unable to self- bandage or perform remedial exercises. Further, they may be significantly limited by symptoms such as fatigue and dyspnoea due to marked deconditioning. The coordination, dexterity and strength requirements for bandaging and donning compression garments can elude even healthy patients; therefore, these potential difficulties should be considered when formulating a management plan for terminally ill patients .
Activity - before moving onto the next section, please take 5 minutes to consider the knowledge gained from this section.
Below is a summary of the key points from this section:
This section will introduce how lymphoedema is managed with decongestive lymphatic therapy (DLT) in a palliative setting and why it must be altered.
Traditionally lymphoedema is managed with DLT and is based on four pillars of care: compression, massage, skin care and exercise. However, routine intensive management using decongestive lymphatic therapy may not be appropriate due to weakness and frailty so this must be modified and adapted. Please refer to the previous section about treatment and management of lymphoedema if you need to refresh your memory of the four components of DLT.
In a palliative setting, physiotherapists need to approach lymphoedema management with an understanding that disease processes are dynamic and may progress rapidly. In order to offer patients long-term relief, the chosen treatment plan must also have the ability to adapt quickly therefore treatment must be feasible and flexible. Therefore, DLT is modified to suit the needs of a palliative patient.
Modified DLT has the capacity to significantly benefit patients with far advanced disease who have lymphoedema or multi-factorial oedema. DLT can enhance patients’ function and comfort while preventing needless complications and enhancing psychological well-being .
Below is a summary of the key points to remember from this section:
Modified Decongestive Lymphatic Therapy
This section will go on to discuss the modifications made to decongestive lymphatic therapy when working in a palliative setting and the evidence behind it.
Patients with mild swelling can be managed in compression garments either ready made or made to measure. Poorly fitted garments can damage the skin and push fluid to areas that have no compression applied, e.g. fingers. Palliative bandaging consists of layers of padding and short-stretch bandaging over a cotton liner and will include bandaging the digits. In palliative patients there is a risk of forcing fluid into adjacent areas, e.g. the genital or breast area. Expertise is required to judge the correct amount of pressure to apply to support the swollen limb but prevent truncal swelling. Therefore any bandaging should be carried out or supervised by a lymphoedema practitioner.
Manual lymphatic drainage
Manual lymph drainage (MLD) is highly effective in the palliative setting. It has pain relieving properties and can significantly clear even tight, malignant oedema. MLD should avoid areas of dermal compromise, cancerous invasion, extensive fibrosis, or skin hypersensitivity. However, if MLD has been found to be effective over such areas, the treatment should be continued as the main aim of palliative care is to better a patient’s comfort and quality of life.
Normal use of the limb can be sufficient to assist lymphatic flow but even normal use may be restricted in palliative patients. Pain, weight of the limb, fatigue or neurological impairment will impact limb mobility. Relatives and carers could assist in some passive exercises if tolerated. Elevation of the limb will help reduce the gravitational component of the swelling, e.g. supporting the arm on a pillow or cushion to prevent pooling at the elbow. Aerobic activities to stimulate lymphatic return should be encouraged within the patients tolerance. Aerobic exercise minimises psychological distress and fatigue among cancer patients, even those with advanced and widely spread disease.
In palliative patients, the skin can become very fragile and the aim is to prevent any damage.
Care should be taken to wash and dry thoroughly, especially between the digits and any skin folds. Apply an unscented moisturiser to prevent drying of the skin. If compression hosiery is being applied care should be taken to prevent damage during application. Any breaks in the skin can result in lymphorrhoea – lymph fluid leaking onto the surface of the skin. The extent of the lymphorrhoea will depend on the size of the tear in the skin and whether the limb is dependent or not. The fluid causes maceration of the skin, soaking of clothing, footwear and bedding and can be very cold and distressing for the patient.
Mild lymphorrhoea can be treated with an absorbent dressing and continuing with compression hosiery. In some cases, however, the management is purely palliative as bandaging may not stop the lymphorrhoea, especially if the patient is sitting in a chair for the majority of the time. Bed rest is occasionally the only cure for lymphorrhoea and this inevitably takes place as the patient gets closer to death.
Activity - take 5 minutes to undertake the following quiz to test your knowledge surrounding the treatment of a palliative patient with lymphoedema. The answers are provided throughout the text above.
Research is limited in the area of modified decongestive lymphatic therapy. Much of the advice and literature available is based on expert opinion only.
Generally it has been found that patients undergoing decongestive lymphatic therapy for the management of lymphoedema have improved outcome measures when participating in a therapist supervised exercise session as part of treatment compared to carrying out a therapist-taught home exercise programme.
Reducing the size of an oedematous extremity may dramatically enhance patients’ functionality. Many patients are significantly deconditioned therefore eliminating burdensome limb volume can maximise mobility thereby reducing their risk of immobility-associated problems. Limb volume reduction may be a key factor in allowing patients to remain independent in activities of daily living.
More literature that details the experience of palliative patients is needed. Randomised trials are difficult to conduct in this population therefore case study based trials would be valuable. Further qualitative studies could include the views of family members who have experienced a relative receiving palliative care. This would provide an additional view point as well as the patients. As previously discussed, palliative care is a wide approach encompassing the needs of the patient and their family. This type of study would assist the health service identify any issues or gaps in the service provided and could lead to future and continual development of care.
Below are some useful documents and guides available that have more details on managing lymphoedema in palliative care and more in-depth recommendations of what modifications can be made to DLT to suit a patient in palliative care. Links to these resources are provided in the references if you would like to undertake further reading:
You have now reached the end of this section, below is a summary of the key points to remember:
This section will give you the opportunity to take all of your knowledge gained from the above section (Physiotherapist Role) and apply it to the case study below. This should take you approx. 20-30 minutes to complete.
Whilst reading the case study, have a think about how you would structure your assessment and what kind of treatments would be suitable.
- Mrs R reports having pain due to the lymphoedema, what kind of treatment may relieve this?
- How could you help Mrs R deal with her stress?
- What advice would you give Mrs R about skin care?
- What assessment tool would be useful when assessing Mrs R?
- Mrs R states that she feels like a burden on her family. From the assessment tool you have chosen, how could this aid you in resolving her concern?
- What is the final modified treatment you could utilise for Mrs R? And what are the risks associated with it?
- Recently Mrs R has been struggling to partake in activities that she enjoys and are a regular part of her day-to-day life. As a physiotherapist you will set a series of small goals for Mrs R to achieve in order to eventually get back to her hobbies. What should you consider when setting these goals?
Answers can be found here
The aim of this section was to provide an understanding of the assessment and treatment strategies used by physiotherapists in a palliative care setting and how this differs from the previously discussed non-palliative management of lymphoedema. This is important to understand for future practice as you could find yourself working with pallitive patients where you may have to alter your usual treatment approach and goal setting to suit the needs of the palliative patient. It was highlighted throughout this section that the emotional, physial, social and spiritual needs of the patient are considered in palliative care using a very MDT approach including both patient and family or carer.
You should feel confident discussing the following areas:
- Holistic needs assessment
- Range of assessment tools e.g. SPARC
- Treatment challenges
- Goal setting
- Modified decongestive lymphatic therapy
By now you should have achieved learning outcome 4 -
"Critically appraise the role of a physiotherapist treating lymphoedema in a palliative care setting compared to a non-palliative setting."
Competency Framework and Current Guidelines
In this section we will look at the Palliative Care Competence Framework for Physiotherapists specifically. This section will further your knowledge in relation to learning outcome 4 as it will discuss the physiotherapists role specifically in a palliative setting.
The framework was designed to standardise education for undergraduates and postgraduates in Europe. It provides a guide for the acquirement of knowledge, skills and attributes needed for clinical practice in health and social care professions. This document provides flexibility and autonomy in order to develop core and discipline specific competences which can be applied to both generalist and specialist palliative care.
As mentioned previously, when caring for people with life-limiting conditions who may have complex care needs, a multidisciplinary approach is preferred.
The core competences outlined in the guide are common to all health professionals and convey the primary level of understanding that is essential to provide palliative care.
There are 6 domains of competency:
1 - Principles of palliative care
2 - Communication
3 - Optimising comfort and quality of life
4 - Care planning and collaborative practice
5 - Loss, grief and bereavement
6 - Professional and ethical practice in the context of palliative care
Each domain is defined with a statement which remains the same regardless of the setting where care is provided.
Each domain has an indicator that outlines the competences required by professionals depending on the context of their roles and the level that palliative care is provided. The indicators are based on advanced knowledge, skills and understanding and clinical expertise. The indicators are named “ALL”, “SOME” and “FEW” and are outlined below -
For the purpose of this wiki, taking into account the target audience – final year students and newly qualified physiotherapists – the “ALL” indicator specifically for physiotherapy will be outlined for each domain.
1. Principles of Palliative Care
The aim of palliative care is to improve the quality of life of people who are suffering with life-limiting conditions. This care does not only include the physical facet of their condition but the social, psychological and spiritual aspects also. Palliative care is applicable for people of all ages and may be introduced at any point in a disease trajectory.
Communication is an essential component to the delivery of palliative care. When caring for people with complex and life-threatening conditions, good communication is important particularly when bad news needs to be relayed or when difficult decisions regarding treatment need to be made. Communication is imperative when circumstances are uncertain or when distress and strong emotions arise.
Communication is a method of:
- Enabling therapeutic relationships with patients and families
- Ensuring that the patient and family are key components in decision making regarding care
- Enabling effective inter-professional or inter-agency teamwork
3. Optimising Comfort and Quality of Life
As mentioned previously, people receiving palliative care are not only affected by the physical symptoms of their condition but also the psychological, spiritual and social aspects. Optimising quality of life for people is a dynamic process that involves acknowledging, anticipating, continuously assessing and responding to a range of complex symptoms and needs. The process must be done in a proactive manner to relieve suffering.
4. Care Planning and Collaborative Practice
In palliative care, care planning involves co-ordinating and integrating person-centred care to promote quality of life. Patients and their families should engage in the process and concerns from families or carers should be considered.
- Assessing need
- Promoting and preserving a person’s choice
- Predicting likely problems
- Planning for the future in the wake of a changing or deteriorating disease trajectory.
Care planning should ensure that multi- disciplines and agencies can be referred to as required.
5. Loss, Grief and Bereavement
Dealing with loss, grief and bereavement is an intrinsic part of palliative care. A minority of people may be at risk of developing difficulties during their grieving. Professionals using a palliative care approach have an essential role to play for all but in particular for those who may require bereavement therapy or counselling by providing support and information.
6. Professional and Ethical Practice in the Context of Palliative Care
There may be a time when specific treatments or interventions are futile or burdensome. Deference in palliative care refers to the importance of respecting the patient’s wishes, needs and values when dealing with a life-limiting condition. Professional and ethical practice concerns the best way to provide continuing care as people’s care needs change during the course of their condition. It guides professionals to reflect on their contribution to a person’s care and the contribution of other professionals.
This large framework may appear quite daunting due to the number of points it includes. However, based on discussions with expert clinicians and placement educators, we felt it was extremely important for students and new graduates to have an understanding of what is required from them when working in a pallitve setting. Although a lot of this learning will come through experience, this framework clearly sets out exactly what is required from physiotherapists working in palliative care and is an extremely useful resource to prepare students and new graduates for this speciality.
Up to now, we have discussed specifically the role of the physiotherapist in palliative care where evidence has been taken from a wide range of resources, some quite recent and others a little older.
While the principles of palliative care have remained relatively the same over the past number of years, the evidence base surrounding interventions and how care should be delivered is constantly evolving.
The NICE guidelines - End of Life Care for Adults is one of the most recent guidelines available. NICE guidelines are classed as high quality evidence and is an excellent resource for not only newly qualified professionals but for anyone working in the field of palliative care.
As an additional activity, if you would like to know more information in greater detail about palliative care as a whole topic and the most up to date evidence in this area, please refer to this guideline. (Please note, this is a large document and is not a requirement of this learning resource, however as discussed it is a great resource with up-to-date evidence to guide your clinical practice.)
This section aimed to take you through the different components included in the Palliative Care Competence Framework for Physiotherapists and point you in the direction of the current guidelines that shape the provision of palliative care services as a whole in the UK.
We hope that this section has given you a clear understanding of what is expected of you as a physiotherapist working in palliative care. It is important to consider the aspects of the framework whenever treating a person with palliative care needs as these needs differ to that of non-palliative patient which was discussed in a previous section.
By now you should feel more prepared to work with and treat palliative patients as a physiotherapist. Although this does not link specifically to a learning outcome, as stated we felt this was an important area to cover in order to prepare students and new graduates for future practice.
You have now reached the end of this learning resource. Well done!!
Although the treatment of lymphoedema is a specialist skill and requires additional training, through communication with expert clinicians we concluded that students and newly qualified professions should be able to identify lymphoedema and understand the treatment that their patients may be receiving.
Furthermore, it has been discussed that lymphoedema and palliative care are both current issues in physiotherapy practice however this is rarely covered throughout university teaching. Due to this, palliative care in particular can often be quite a daunting experience for students or new graduates.
Based on the above points, we hope this learning resource has not only provided you with a background to lymphoedema and palliative care, but also provided you with an understanding of the available treatment and how this can be modified in a palliative setting.
By now you should have achieved the learning outcomes that were introduced at the beginning –
Here are some additional resources that may benefit you as a future clinician. These may be of use when explaining the condition and treatment to patients or family. Furthermore, they are good sources of information to direct patients or family to if they wished for additional information at home.
- NHS Information
- Bupa Cromwell Hospital patient information
- Lymphoedema Support Network
- Cancer Research UK
One final reflection –
Thank you for taking the time to complete this learning resouce, we hope you have found it useful and enjoyable!
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