Managing Lymphedema (Lymphoedema) at the End of Life
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 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 end-stage chronic conditions, edema is a common feature. Unfortunately, the symptoms of this condition can vary widely as causes are multifactorial. Because of this, terms like ‘edema’ and ‘chronic edema’ are preferred in end-of-life cases to the more common term ‘lymphedema’. Chronic conditions are always involved and therefore, palliative care is more appropriate than ‘intensive’ management. Understanding the varied components of edema cases enables a more complete assessment and management.
Assessment and Goals of Palliative Care
Edema causes a wide range of problems for patients. Holistic assessment should involve a multi-disciplinary team. This ensures that the patient is considered as a whole person. The foremost goal of palliative care is always quality of life over quantity. However, the patient and/or their family should be made aware of caregivers’ assessments and be involved in all decisions. With the patients’ main concerns and priorities in mind, the one making the assessment should be able to better understand the individual patient and set achievable goals.
Though Complex Decongestive Physiotherapy (CDT) considerably aids those with lymphedema, most patients requiring palliative care are unable to perform, or benefit from, this therapy. With some simple modifications, however, CDT can still bring considerable relief to these patients. Palliative care employs follow-up visits over self-care, modifies the standard treatments and exercises, and emphasizes compression bandages and elastic garments. An adapted CDT allows a lymphedema therapist to aid in improving the quality of life in their edema patient both physically and psychologically.
Symptom Control and Wound Care
When caregivers focus on each patient’s unique condition and needs, it is possible to enhance patient function and comfort without needless complications. Clinical aspects of symptom control include pain management and nutritional and psychological support. 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. Because the nature of these wounds tends to cause severe emotional distress and isolation, it is essential for caregivers to reduce symptoms and ease their patients. Special attention should be paid to bed positioning. Emphasis should always be on the patient’s concerns, but also on the necessary and practical care of these wounds.
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.