Managing End of Life Lymphedema

Edema at the end of life usually accompanies a terminal illness and can be very distressing to patients, their families, and health care professionals. However, adapted treatment within the palliative setting enables caregivers to provide relief from symptoms and permit the individual to live as actively and independently as possible until death.

Presentation of Edema

In cases of advanced cancer and other end-stage chronic conditions, edema is a common feature. When net capillary filtration exceeds lymphatic drainage, symptoms of edema begin to show, such as swollen limbs, ‘pitting’, thickened skin, and fibrosis. 

However, the symptoms can vary widely since causes of edema are usually multifactorial. Because of this, terms like ‘edema’ and ‘chronic edema’ are preferred to the more common lymphoedema. Even though edema has a lymphatic proponent, drainage is not usually the primary cause, but rather a symptom itself. Previous surgery, immobility, and certain drugs play a large part in edema, but common presentations always involve chronic conditions. Because of this, palliative care is more appropriate than routine ‘intensive’ management. Understanding the varied components of edema cases enables a more complete assessment and management.

Assessment and Goals of Palliative Care

Edema at the end of life is common and can cause various problems for patients. Because these difficult conditions can tremendously vary, holistic assessment involving a multi-disciplinary team ensures that the patient is considered as a whole person. The foremost goal of palliative care is always the quality of life over the quantity. However, the patient and their family should be made aware of caregivers’ assessments and concede to all decisions. With the patients’ main concerns and priorities in mind, the one making the assessment should:

  • Set achievable goals.
  • Understand the history (specific causes, anticipated progression) and impact of this individual case of edema: physical, social, psychological, spiritual.
  • Consider the patient’s current and recent medications. Many drugs can exacerbate or even cause edema.

It is essential for caregivers to communicate with their patients and for those patients to feel like their concerns are understood. During assessment, everyone on the team needs to be made aware of how much information the patient wants, or is able, to receive about their condition. As family support is necessary for the patient’s quality of life, this should be encouraged.

Adapting CDT

Though Complex Decongestive Physiotherapy (CDP) considerably aids those with lymphedema, most patients requiring palliative care are unable to perform, or benefit from, this therapy. With some simple modifications, however, CDP can still bring considerable relief to these patients so long as there is close collaboration with the whole team. And every caregiver involved must understand the cause of the individual patient’s edema. Palliative care employs follow-up visits over self-care, modifies the standard treatments and exercises, and emphasizes compression bandages and elastic garments. It is also essential to possess a vision of the disease location and the impact this has on standard clearance pathways. An adapted CDP allows a lymphoedema therapist to aid in improving the quality of life in their edema patient both physically and psychologically.

Symptom Control

Modified CDT considerably benefits patients in palliative care. When caregivers focus on each patient’s unique condition and needs, it is possible to enhance patient function and comfort without needless complications. Assessment of individual cases is necessary in palliative care cases as patients’ physical disabilities must be considered. Clinical aspects of symptom control include:

  • Pain management
  • Nutritional support 
  • Management of bowel and bladder function
  • Psychological support
  • Wound care

Because these patients are unresponsive to curative treatment, they can rapidly become despondent and focus on the pointlessness of care. Emotional and spiritual care is fundamental to their quality of life and involvement from spiritual and psychological professionals may be helpful.

Wound Care

In palliative care situations involving edema, wound treatment is more focused on easing physical and psychological discomfort than on healing. Fungating lesions commonly occur within the last six months of life and present yet another distressing challenge to both the patient and caregivers. These wounds are a constant reminder to the patient of the process of their disease. Extreme drainage and odor can significantly interfere with the quality of life and lead to isolation from family and social support. Because the nature of these wounds tends to cause severe emotional distress and isolation, use of the pathway of assessment is essential for caregivers to reduce symptoms and ease their patients. Emphasis should always be on the patient’s concerns, but also necessary removal of dead tissue, treating bacterial concerns, and controlling wound drainage. In the case of patients for whom healing is not a priority of care, re-evaluation should occur regularly.

Conclusion

A palliative approach to treating edema in end-of-life patients enables the caregiver to focus on and support the individual and their family. As every case widely varies, assessment and adapted versions of standard treatment will address the symptoms and the associated psychological distress of this condition. This will provide each patient with the best quality of life possible. For more in-depth understanding and management techniques, peruse the complete document from the International Lymphedema Framework.

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