Lymphoedema in advanced disease:

how can care be improved?

Jeanne EVERETT

LYMPHOEDEMA NURSE

ST TERESA’S HOSPICE, DARLINGTON

Aims of session

Remind ourselves of

The goals of treatment in palliative care,

Some causes of oedema in advanced disease,

The general principles of management,

Familiarise ourselves with

Some more specialised treatment options available from Haddenham healthcare.

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Reminder …

• Lymphoedema: tissue swelling that develops due an interruption in the lymphatic system.

• In the Western world the main cause is cancer and its treatment - surgery to remove lymph nodes; radiotherapy to nodes; local metastatic disease.

• Or a combination of the above

Todd (2009)

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Caring for the patient with lymphoedema in advanced disease

Requires specific attitudes, modified treatment approaches, and a redefinition of the goals of care.

(Towers et al, 2019)

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Aims of Management

• RELIEVE symptoms

• REDUCE risks associated with the oedema

• IMPROVE quality of life

• RESPECT the patient’s choices & priorities

• PROVIDE psychological support to patient & family

• ENSURE burden of treatment does not outweigh benefits

• (Honnor, 2008)

(ILF & CANADIAN LYMPHOEDEMA FRAMEWORK, 2010)

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Psycho-social effects of lymphoedema

Significant effect on quality of life

• fear, anxiety & depression.

Physical Problems may include:

• pain & discomfort

• difficulties with clothing

• reduced function & mobility

• social isolation

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..but in palliative care...

• The swollen limb can become a central focus for the whole family

• It provides a constant reminder of the disease

• It can also represent the marker for advancing disease

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Assessment:

WHY DO WE NEED TO ASSESS?

• To determine the differential diagnosis in order totreat the patient appropriately

• To Set realistic goals

• To determine what the patient sees as problem

Causes of oedema - general:

Cardiac failure

Late stage chronic renal failure – nephrotic syndrome

Nutritional deficiency - hypoproteinaemia

- protein-losing enteropathy

- catabolic states

Hepatic disease

Lymphovenous oedema – immobility/dependency

- neurological deficit

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Causes of oedema – local:

• Due to lymphatic obstruction or damage:• surgery or radiotherapy• metastatic tumour in lymph nodes or skin lymphatics• Infection

• Venous obstruction• DVT• SVCO/IVCO• extrinsic tumour compression• thrombophlebitis

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Causes of oedema – Medication:

• Steroids

• Non Steroidal Anti-Inflammatory drugs (NSAIDS)

• Calcium antagonists

• Pregabalin

• Hormones

• Biphosphonates

• ANTI-CANCER MEDICATION - Taxotere

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Consider the following complications:

• Altered sensations.

• Brachial plexus neuropathy – heavy, dependent limb.

• Neuropathic pain – due to radiation fibrosis, infiltrating disease.

• Genital swelling.

• Ascites.

• Facial swelling

• Lymphangiosarcoma.

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Factors Affecting Outcome:

• Advancing, obstructive tumor.

• Venous thrombosis.

• Reduced mobility & function.

• Uncontrolled pain.

• Medication

• Chronic skin problems & tissue changes:

e.g. broken or fragile skin,

lymphorrhoea,

recurrent infection,

fibrosis.

(Williams, 2004)

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Management

4 CORNERSTONES may need to be modified

5th cornerstone - REMEMBER Kinesio Taping,

In addition, consider:PhysioOT drug therapy - diureticsanti-cancer therapy.

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Be Innovative!

Evaluation of treatment outcomes

Measured by improvements in symptoms, skin condition and quality of life, rather than by limb size.

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Remember:

• Usual treatment options may not be possible for this patient group

• Any intervention should be aimed at symptom relief and comfort

• Treatment plan must be discussed with patient, carers and other professionals, in order to agree realistic goals

(Landers & Thomas, 2017)

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SKIN assessment – skin care is always importantSKIN MAY BE - dry, fragile, delicate, damaged.

TISSUES MAY BE – Firm, or soft & pitting

Remember - increased risk of - infection,

fungating wounds,

DVT,

lymphorrhoea,

All the above need prompt, appropriate treatment.

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Exercise & positioning: Consider

• Functional assessment in relation to particular individual tasks,

• Active and passive movements.

• Fine finger movements may help to reduce hand & finger swelling,

• Positioning – support for a heavy limb, to prevent joint & muscle strain, & to aid drainage, especially in dependency oedema

• Care if neurological deficit is present – use of slings

• Tripudio• REMEMBER REFERAL TO PHYSIO & OT

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Lymphatic drainage Massage

• Redirects fluid away from oedematous areas via collateral routes towards healthy lymph nodes.

• Useful in managing pain and other symptoms i.e. dyspnoea.

Can therefore be particularly useful in palliative care.

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Lymphatic drainage massage

SLD

Can be taught to a carer or relative - may help them to feel more “useful”

Treatment is more readily available for the patient.

MLD

Indicated for truncal swelling: breast, genital, head & neck.

Can significantly improve pain & altered sensations caused by skin stretching or limb heaviness.

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Compression & Support

• Older / larger / “slack” garments (lower class)

• M.T.M. for “difficult to treat swelling”

• M.T.O. for better fit

• Palliative bandaging or wraps if:

fragile skin,

pain,

lymphorrhoea.

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Palliative bandaging

Fragile skin, firm, or soft-pitting tissues, pain, lymphorrhoea.

Soft/pitting tissues – beware of using long stretch bandages, which can cut into “boggy” tissues and may cause damage. Always consider short stretch, applied with reduced compression to offer support

Wraps may be used in place of bandages in many cases

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Upper Limb Lymphoedema

Haddenham Venex sleeve

Soft stretchy conforming fabric,

easy to don & doff,

ideal for palliative patients where lighter compression may be required.

HAND SWELLING

Microfine gloves……easy to don and doff, giving gentle compression. Can be cut to size

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Haddenham venex sleeve …….

• extra wide top available, with 5cm grip top - added comfort for larger upper arms - prevents rolling

• large soft elbow insert prevents chaffing & improves comfort in elbow crease

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Comfiwave – new gentle comfortable garment for night time wear or for palliative care

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Case Study 1 - Mary

• 84 year old lady – Breast Cancer 2015; W.L.E. & R.TH

• 2019 – Secondary cancer in lungs, Supra-clavicular nodes, with a soft tissue mass extending from the anterior chest wall to left axilla, & Lymphoedema

• Presented with oedematous left arm hand & fingers, reduced range of movement & poor grip ability.

• 16% LIMB VOLUME DIFFERENCE.

• CT scan confirmed tumour compression of the axillary vein & brachial plexus nerve, causing the reduced range of movement & the soft pitting nature of the oedema.

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Mary’s Management

• Skin care, passive & active movement, positioning

• Soft pitting oedema prevented use of a traditional sleeve

• Comfiwave combined arm garment was selected

• Pertex Light flat knit class 1 glove to soften finger swelling

• Arm sling for use when out, to support dependant limb

• The Comfiwave was fitted easily by Mary with some assistance from her husband

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Outcomes of treatment using Comfiwave.• AFTER 2 WEEKS - marked improvement in Mary’s arm:

• size had reduced to an 8% limb volume difference,

• shape was better,

• slight improvement in her hand function - due to reduction in hand / digit oedema.

“my arm feels safe & it is comforting to wear “.

MARY CONTINUES TO WEAR THE COMFIWAVE AT HOME & AT NIGHT TIME

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Case Study 2: Joan

• Admitted to the hospice for symptom control:-

• grossly swollen left arm and hand resulting in severe neuropathic pain

• Various sleeves, wraps and bandages were tried

• All proved intolerable due to the severe neuropathic element to her pain.

Joan: management

• MLD privately - results were often small and short lived, due to not being able to apply any appropriate compression following treatment.

• Blue-line cotton stockinette - only form of sleeve that Joan could bear, which was comforting, but did not provide compression.

• On receipt of the COMFIWAVE, Joan initially required the assistance of 2 to get the garment on, due to both the size of her limb and the severe pain in her hand and arm.

• Staff were not confident that she would be able to tolerate it for more than a short period…….

Joan: outcomes

• After a few hours - definite change to the softness of Joan’s hand and arm.

• This encouraged her to persevere, despite the discomfort that she was in.

• After a few days of wearing the Comfiwave -

swelling decreased, pain reduced slightly, mobility and function of the limb much improved.

Joan: ongoing…

• Joan has ongoing issues with pain, but the COMFIWAVE has undoubtedly improved her quality of life and she has been discharged home.

• COMFIWAVE continues to be the only garment she is able to tolerate.

Lower Limb Lymphoedema

Consider:

Class 1 to offer light compression for palliative patients:

Haddenham Veni for gentle compression – available next day

Star cotton – extra support

Pertex light – flat knit for distorted limb shape, with Velcro straps for easy donning and doffing

MTO garments for greater choice and options available

Comfiwave Lower Limb

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Swelling of Feet & toes

Haddenham microfine toe caps:

if bandaging is not suitable,

Offers gentle compression & Can be cut to size

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Easywrap

• Available in Easy Wrap “light”, which can be applied at lower compression, allows comfort and gentle support in palliative care, and can be easier to don and doff than traditional garments or bandaging

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MIDLINE OEDEMA: responds well to MLD, taping, compression & support - Eto.

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Key points

• Lymphoedema care in advanced cancer can contribute to improving the patient’s quality of life.

• Oedema may be multifactorial, and aetiology must be understood in order to determine appropriate treatment.

• Importance of working closely with the palliative care team.

(Towers et al, 2010)

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More key points ….

• CDT may need to be modified, using lower compression and avoiding MLD directly over areas of subcutaneous tumor.

• Firm fitting compression garments are often not suitable or well-tolerated in the palliative context because limb size may vary from day to day.

(Towers et al, 2010)

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Management must reflect the principles of palliative care, with a focus on the palliation of physical symptoms and the maintenance of independence for as long as is comfortably possible.

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Thank you for your attention

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References

International Lymphoedema Framework & Canadian Lymphoedema Framework (2010) The Management of Lymphoedema in Advanced Cancer and Oedema at the End of Life. Best Practice Document

Honnor a (2008) The Management of Chronic Oedema in Palliative Care. British Journal of Community Nursing, 13: 54-59

Landers A & Thomas M (2017) Quantitative Study of the subcutaneous needle drainage of lymphoedema in advanced malignancy. Journal of lymphoedema, 12:1, 22-26

Todd M (2009) Mananaging lymphoedema in palliative care patients. British Journal of Nursing, 18:8, 466-72.

Towers A, Hodgson P, Shay C & Keeley V (2010) Care of Palliative Patients with Cancer Related Lymphoedema. Journal of Lymphoedema 5:1, 72-80

Williams A (2004) Understanding and Managing Lymphoedema in People with Advanced Cancer. Journal of community nursing 18:11, 30-40

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