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Managing lymphoedema in palliative care patients

Article in British Journal of Nursing · April 2009

DOI: 10.12968/bjon.2009.18.8.41809 · Source: PubMed

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 Managing lymphoedema in palliative
care patients
Marie Todd

the lymphatics to function normally is impaired by the

presence of local obstruction. Water, protein and waste
Abstract products accumulate in the tissue spaces distal to the
The development of lymphoedema in advanced disease is blockage. The high protein concentration of the oedema
distressing for patients and their carers and can prove difficult to renders the patient at risk of developing cellulitis
manage for health-care professionals involved in their care. This ■ Venous obstruction by thromboembolism or pressure from
article will provide an overview of co-morbidities that cancer tumour also results in oedema. There is a higher risk of
patients face that will have an impact on the development, development of DVT in patients with advancing disease
progression or management of lymphoedema. The principles of (Lee and Levine, 1999). Obstruction in major vessels, e.g.
assessing and managing lymphoedema in palliative care patients is superior or inferior vena cava, can produce bilateral limb
presented, based on the Scottish government’s action plan Living swelling that may extend into the trunk
and Dying Well. The need for collaboration with other members of ■ Hypoproteinaemia – the reduction in plasma protein
the multi-disciplinary team to provide the seamless, patient-centred levels caused by liver disease or nutritional deficiency
service advocated in this action plan is also presented. in advanced disease reduces the osmotic pressure in the
Key words: Advanced disease n Compression therapy n Lymphoedema capillaries, which affects the absorption of fluid from the
n Palliative care tissues spaces into the lymph circulation

T
■ Many drugs used in the management of cancer or its
he World Health Organization (2004) defines side-effects can cause or compound existing swelling,
palliative care as an approach that improves the e.g. steroids, non-steroidal anti-inflammatory drugs, some
quality of life of those patients who face life- chemotherapy drugs, and gabapentin
threatening illness, and their families, through ■ Reduced mobility and function can be a result of many of
prevention and relief of suffering using early identification, the problems associated with advancing disease, e.g. fatigue,
assessment and treatment of pain and other problems. Many pain, the swelling itself, bone metastases, and neurological
lymphoedema services have their origins in the palliative impairment. Gravity and reduced muscle pump action
care setting and as a result lymphoedema practitioners have impairs the lymphatic and venous return resulting in or
used their skills and knowledge in palliative care to adopt compounding the oedema
a holistic approach in the assessment and management of ■ The management of fungating lesions can affect the
lymphoedema in patients whether they are palliative or management of the swollen limb if the lesion is in close
not. This entails focusing on the person not the condition proximity to the swollen area, e.g. in the axilla or the groin.
and applying a patient-centred approach to eliciting and Access to the lesion may be restricted due to the severity of
meeting the physical, psychological and social needs of the swelling and reduced mobility of the shoulder. Exudate
patients and carers. may be increased if compression is applied to the limb
The presence of lymphoedema can be very distressing for ■ Pain will reduce the movement in the swollen limb and
palliative patients and their families. It can be viewed as a reduce the treatment options, e.g. bandaging the limb may
constant reminder of the cancer and can be very challenging not be possible if movement causes pain.
for practitioners to alleviate. The swelling can present in one
or more of the limbs and can extend to affect the genitalia, Assessment of oedema in palliative patients
the trunk, head or neck. The swollen limb is often heavy and Lymphoedema is known to affect the physical, psychological
uncomfortable, which may lead to severely reduced mobility and social well-being in patients (Tobin et al, 1995). A
and function (Figure 1). holistic approach to assessment is therefore required. A
There are several factors that may contribute to or have an thorough history should be taken to ascertain the correct
impact on the management of the swelling in palliative patients: cause of the swelling. Other medical problems, current
■ Obstruction of lymphatics by tumour – the ability of medication, relevant social circumstances, and lifestyle, should
all be examined to ensure all factors affecting the patient’s
Marie Todd is Clinical Nurse Specialist in Lymphoedema, condition or possible treatment are noted. History of the
Lymphoedema Clinic, Greater Glasgow and Clyde NHS Trust, Glasgow development of the swelling should also be recorded as
Accepted for publication: March 2009 this may help identify the cause of the swelling, e.g. if a
patient with breast cancer successfully treated many years

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 Assessment

Provide care/ Patient/family Identify needs

involve other HCPs

Treatment plan

Figure 2. The ongoing cycle of treatment and assessment.

Treatment options
Managing lymphoedema in palliative patients can be very
challenging for health-care professionals. Practitioners often
have to deal with swelling that is unresponsive to treatment
and unrealistic patient expectations. Planning care for
palliative patients is difficult as many of the strategies used
to palliate the symptom can continue until the patient dies.
This affects forward planning for practitioners who may
have patients booked in for treatment several months in
advance. Outcomes of intervention are improved if treatment
or referral is carried out as early as possible following the
development of swelling. In some cases, patients have been
referred to lymphoedema services when the swelling has
become so extensive that very little can be done. Standard
Figure 1. Lymphoedema in the arms.
treatment strategies include:
■ Care of the skin to prevent infection and maintain
ago suddenly develops arm swelling it would be prudent to integrity
exclude cancer recurrence. ■ Exercise to promote activity of the initial lymphatics
Baseline measurements should be taken to evaluate ■ Compression to reduce the swelling either in the form of
management outcomes and include: limb volumes; function bandaging or hosiery
and movement of the limb; weight; skin changes; vascular ■ Lymphatic massage to direct the fluid to an area of the
status; psychological effects of the swelling; and the patient’s body where lymphatic system is functioning normally.
expectations. From this assessment a programme of care is In palliative patients practitioners use modified treatment
planned. This process can take up to two hours to carry out regimes depending on need and ability to comply.
and many aspects of a standard lymphoedema assessment may
Figure 3. Lymphorrhoea on the legs.
not be appropriate for palliative patients.
Much of the history can be sought from other sources,
including family members, and the baseline measurements
can be modified to suit each individual patient. Measuring
the limb for example is not always necessary, e.g. if the patient
is in too much pain to move the limb for measuring or if the
disease is so advanced that supporting the limb is the main
aim. Communication with any other health-care professionals
involved is vital, e.g. oncologists, palliative care practitioners,
GPs district nurses, to determine involvement, disease status
and treatment options. Assessing the issues that the patient
feels are most important is a priority and identification of
needs outside the remit of the lymphoedema practitioner will
require onward referral to the most appropriate professional.
Any discussion regarding needs, goals, treatment plan and
any onward referral should be considered and family focused.
Good communication skills are required in order to be able
to elicit problems and provide clear and realistic treatment
goals at a pace and level the patient is comfortable with
(Faulkner and Maguire, 1994). The assessment should be
ongoing as disease progression will have an impact on the
patient’s priorities and subsequent treatment plan (Figure 2).

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 The risk of infection especially when there is a break in the
skin is high in lymphoedema patients. A course of antibiotic
therapy such as penicillin V or flucloxacillin over a two-week
period is indicated (details of the consensus document on the
treatment of cellulitis in lymphoedema can be downloaded
from www.thebls.co.uk/consensus).

Exercise
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 on 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. Care should be taken to ensure
the arm is not allowed to hang by the side either when
sitting, in bed, or walking. The arm could be supported in a
sling if necessary. This will also reduce the pulling weight on
the shoulder and neck muscles.

Compression therapy
Patients with mild swelling can be managed in compression
garments either ready made or made to measure. It is
important that measuring for and prescribing compression
hosiery should be carried out by a practitioner who is suitably
qualified in this field. Poorly fitted garments can damage the
skin and push fluid to areas that have no compression applied,
e.g. fingers (Figure 4).
There is a range of donning aids available to assist the
application of hosiery, e.g. the ActiGlide® (Activa Healthcare)
which is available on Drug Tariff. If the swelling is more
severe, the limb is mis-shapen, or there are skin changes or
Figure 4. Poorly fitted compression garments can result in swelling in lymphorrhoea, then modified bandaging techniques are
non-compressed areas, such as the fingers. used. Palliative bandaging consists of layers of padding and
short-stretch bandaging over a cotton liner and will include
Skin care bandaging the digits (Williams, 2004). In palliative patients
In palliative patients, the skin can become very fragile and there is a risk of forcing fluid into adjacent areas, e.g. the
the aim is to prevent any damage. Care should be taken to genital or breast area. Expertise is required to judge the correct
wash and dry thoroughly, especially between the digits and amount of pressure to apply to support the swollen limb but
any skin folds. Apply an unscented moisturiser to prevent prevent truncal swelling. Any bandaging, therefore, should be
drying of the skin. If compression hosiery is being applied carried out or supervised by a lymphoedema practitioner. It
care should be taken to prevent damage during application. may be possible to sufficiently improve the limb swelling or
Any breaks in the skin will cause lymphorrhoea – lymph improve the integrity of the skin by bandaging to allow fitting
fluid leaking onto the surface of the skin (Figure 3). The of hosiery. There are some patients, however, who are too ill
extent of the lymphorrhoea will depend on the size of the or uncomfortable for hosiery or bandaging. In these cases,
tear in the skin and whether the limb is dependent or not. simple measures may be adopted, e.g. elevation, Tubigrip®
The fluid causes maceration of the skin, soaking of clothing, (Mölnlycke), cotton liner or bandaging the fingers only.
footwear and bedding and can be very cold and distressing
for the patient (Maclaren, 2001). Mild lymphorrhoea can Massage
be treated with an absorbent dressing and continuing with Manual lymphatic drainage (MLD) is used by
compression hosiery. If this fails to control the leakage then lymphoedema specialists to direct fluid from swollen areas
more specialized dressings, e.g. Aquacel® (ConvaTec) and to those that have an intact lymphatic network. Patients
light compression bandaging may be required. In some cases, are also taught a modified version of MLD to carry out
however, the management is purely palliative as bandaging at home. While massage may not be clinically effective in
may not stop the lymphorrhoea, especially if the patient palliative patients, they do benefit from the soothing hands-
is sitting in a chair for the majority of the time. Bed rest on effect from gentle massage or simply the application
is occasionally the only cure for lymphorrhoea and this of a mild unscented moisturiser to the swollen area and
inevitably takes place as the patient gets closer to death. surrounding skin.

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 Service delivery Glasgow and provision of lymphoedema care for palliative
In 2004, the World Health Organization recommended patients is currently being audited by the team. Funding was
that planning for end-of-life care should reflect patient recently granted from the West of Scotland Managed Clinical
choice regarding place of care. The Scottish Government Network Palliative Care to employ the fourth clinical
has developed an action plan for palliative and end-of-life nurse specialist. This has helped provide a more structured
care endorsing this principle (Scottish Government, 2008). service for in-patients in the West of Scotland cancer centre
Living and Dying Well promotes a seamless and collaborative in Glasgow. Data collection will include referral activity,
approach to developing and maintaining equitable, high treatment required, and treatment outcomes. It will also
quality and sustainable palliative care focusing on person- identify the needs of ward staff who are involved in the
centred care and based on neither diagnosis nor prognosis care of these patients. This information will help shape the
but on patient and carers’ needs. provision of lymphoedema care and educational package
Delivering care for individuals with advanced disease and required within the hospital setting. There are also plans
lymphoedema that reflects this action plan means patients to audit palliative patients over a longer period of time to
should have access to lymphoedema services at home, in provide data on the weighting of oedema compared to other
hospital/hospice or within a clinic setting.The lymphoedema symptoms, input required in terms of treatment offered, time
service in Glasgow is fortunate to be able to provide delivery involved, involvement from other health-care professionals,
of care for palliative patients in all three of these settings. This and outcomes of input.
entails adopting a collaborative approach with community
nurses, GPs, other specialist nurses, e.g. palliative care or tissue Conclusion
viability, hospital/hospice staff and the palliative care team. Managing lymphoedema in patients with advanced disease
Effective communication and knowledge of team-based is challenging. There are many physical, psychological and
working is pivotal to success in working collaboratively with social factors that can affect the swelling and its
other health-care professionals (Lewis and Morgan, 2008). management. Adopting a holistic approach to patient care
In palliative care, the team can extend beyond the health as used in the palliative setting ensures a patient centred
service, e.g. social work or the voluntary sector. Nurses plan of care is developed. This plan will involve
involved in providing care to palliative patients, either at collaboration among health-care professionals, and all
home or in hospital, should be aware of lymphoedema and nurses involved in delivering care to palliative patients
when and how to refer to a specialist clinic. should be aware of lymphoedema and how and when to
In Glasgow there are four lymphoedema specialist nurses to refer to lymphoedema services. The lymphoedema team
deliver a comprehensive service to a wide range of palliative in Glasgow is keen to improve service provision to all
and non-palliative patients from the whole of Glasgow patients whether this be through education or improving
and some of the surrounding Health Boards. Without service delivery following the process of evaluation.  BJN
collaboration with other health-care professionals it would
be impossible to effectively manage lymphoedema in patients
who are either too ill to come to the clinic or are in hospital. Faulkner A, Maguire P (1994) Talking to Cancer Patients and their Relatives.
These health-care professional are supported through either Oxford Medical Publications, Oxford
Lee Y, Levine MN (1999) The thrombophilic state induced by therapeutic
joint treatment sessions with the patient, teaching sessions agents in the cancer patient. Semin Thromb Haemost 25(2): 137–145
within the clinic setting, or larger group teaching sessions Lewis M, Morgan K (2008) Managing chronic oedema: a collaborative
approach. Br J Com Nurs April: S25–32
either in the community or at hospital/hospice sites. These Maclaren JA (2001) Skin changes in lymphoedema: pathophysiology and
initiatives were developed in collaboration with the palliative management options. Int J Palliat Nurs 7(8): 381–388
Miller S (1995) The CNS: a way forward? J Adv Nurs 22: 494–501
practice development team. Scottish Government (2008) Living and Dying Well. Scottish Government,
Providing health care is a dynamic process and requires Edinburgh
Tobin MB, Lacey HJ, Meyer L, Mortimer PS (1993) The psychological
routine evaluation of service provision. The audit cycle is morbidity of breast cancer-related arm swelling. Cancer 72(11): 3248–3252
important in identifying changes in stakeholder needs and is World Health Organization (2004) Definition of Palliative Care. World Health
Organization, Geneva
an integral component of the clinical nurse specialists’ role Williams AF (2004) Understanding and managing lymphoedema in people
(Miller, 1995). Audit is an on-going aspect of the service in with advanced cancer. J Com Nurs 18(11): 30–40

Key Points
n Lymphoedma is a swelling in the tissue spaces that develops due to an interruption in the lymphatic system. The main cause of
lymphoedema in the Western world is cancer and its treatment, such as surgery to remove the lymph nodes, radiotherapy to nodal areas or
local metastatic disease, or a combination of the above.
n The resultant swelling will depend on which area of the body the lymphatics have been damaged in, e.g. in the treatment of breast cancer the
nodes in the axilla may be removed or be treated by radiotherapy and may subsequently lead to lymphoedema in the arm.
n Similarly, treatment for gynaecological, urological or pelvic cancers may result in lymphoedema of the leg(s).

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