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H.R. 4662 - Medicare Lymphedema Treatment Bill Officially Introduced
9th NLN International Conference Sept 22 - 26, 2010
Weight Lifting and LE: Clearing Up Misconceptions
NLN Position Papers: Risk Reduction, Treatment, Exercise, Air Travel, Training
Financial Assistance for Garments:
New Books:
100 Questions and Answers About Lymphedema
Lymphedema Management: A Comprehensive Guide for Practitioners
Updated NLN Online Patient Questionnaire
Q: Should I continue having my lymphedema treated in the advanced stages of cancer?
A: Ultimately this is a question best left to the patient. In late stage cancer, quality of life becomes central to the medical decision making process. Encouragement is given to the patient to continue along the path that is best suited for them with the understanding that they will have the full support of their medical team regardless of their decision to continue or suspend treatment. Reassurance is needed to reinforce that therapeutic intervention, while indicated and known to be helpful in promoting quality of life, will be carried out at the discretion of the patient. Lymphedema treatment can often be rendered at a frequency and duration that is amenable to the wishes of the patient and the family. The therapist should go out of their way to emphasize this point. It is also the responsibility of the therapist to be aware of and convey to the patient the many benefits of continued therapy at any level.
As cancer advances into the late stages, an already edematous extremity may become further engorged with fluid displaying hardened tissue and taut skin. This progression of lymphedema, while quite uncomfortable for the patient, may be controlled and even alleviated somewhat with continued CDT intervention. Controlling this progressive edema will lessen joint restriction and discomfort, and allow for continued functional mobility. Pain symptoms may be more easily controlled while undergoing CDT, as the intervention incorporates massage and deep breathing components, both of which may contribute to effective pain management.
Encouragement should be directed toward the caregiver to learn the basic techniques of MLD massage and bandaging so care may continue to be provided in the home environment should the patient choose.
Deciding to continue CDT intervention will likely be psychologically empowering, not only for the patient but also for the caregiver. While there is little control over the disease process overtaking the body, the ability to be in command of the lymphedema still exists. Maintaining control over as many aspects of life as possible is of the utmost importance. It promotes a greater sense of autonomy and instills confidence as the patient faces the daily challenges associated with the disease process. Great psychological benefit is evident as decision-making stays in the hands of the patient and caregiver(s). In addition, continuation of CDT may provide a forum for patients, caregivers, family members and therapist to bond. This closeness gives a sense of security and comfort that the patient may not be able to capture in other settings, and may ultimately lead to a greater sense of peace among all individuals involved.
The most important aspect of continued lymphedema treatment at this level is the reinforcement that the patient's wishes are, above all, the sole factor driving the treatment intervention. CDT can certainly aid in enhancing function, increasing mobility and decreasing pain, even in the end stages of cancer, but the patient's autonomy is of the utmost importance and is the ultimate driving force.
Q: What if my compression sleeve or stocking is making my pain worse in the advanced stages of cancer?
A: It is likely that as cancer progresses to more advanced stages, there will be changes in the lymphedematous extremity. Typically the extremity becomes engorged with lymphedema, causing changes to the size of the limb as well as to tissue texture and skin integrity. While patients may have advanced to phase II of CDT, where they are using compression garments, exercise, and bandaging to maintain lymphedema, changes in the edematous extremity may negate the typical phase II protocol. It may be prudent to discontinue the use of the compression garment to afford greater comfort. Sacrificing garment use and reverting to bandaging techniques to control edema may contribute to improved pain control and greater sensitivity to compromised skin. While compression garments are less cumbersome, they frequently prove difficult to don and doff and could pose as a source of unnecessary frustration for the patient already dealing with immense daily challenges. In addition, if an edematous extremity progresses in size, the garment may no longer fit appropriately and will adversely affect the limb. An ill fitted garment will be too constricting and is likely to serve as a source of increased pain and further skin breakdown.
Bandaging, while time consuming for the caregiver, can be more effective in managing lymphedema in the late stages of cancer. The use of bandages allows the limb to be wrapped in such a way that painful or irritated areas can be addressed with foam padding and wound care dressings can be applied as a part of the routine bandage wrap. Pressure variance may be achieved with bandaging allowing the extremity to be wrapped to the patients tolerance instead of forcing the pressure of the garment, which maybe more than the patient can tolerate. Management of lymphedema in palliative care is undoubtedly important, however, alterations from the traditional bandaging/garment wear procedure may facilitate greater comfort and mobility as well as contribute to maintenance of skin integrity in these patients.
Q: How can the therapist modify the CDT approach for patients with end stage cancer?
A: While it is certainly appropriate to continue with CDT in the advanced stages of cancer, it is most essential to recognize the need for a modified CDT program. Considering the prognosis of the patient, the goal of CDT changes from one of maximal decongestion, to that of comfort, alleviation of pain, and promotion of optimal function for the patient. Often, patients are faced with significant fatigue-related limitations that greatly impair function. Consideration should be given as to the frequency of therapy sessions as well as the time of day the patient is most likely to be suited for therapy. Attendance in therapy involves tremendous preparation on the part of the patient and caregiver, including dressing and grooming, driving to and from the clinic site and the overall energy demands of mobility. Modifying the traditional recommendation of CDT, 4-5 days weekly may greatly improve the ability of the patient to attend clinic sessions. Scheduling frequency may be more reasonable at 2-3 days weekly or even less at the patient's discretion. In addition, late morning or early afternoon appointment times will likely aid in energy conservation by allowing prolonged preparation time in the morning and adequate rest time at the end of the day.
During the MLD session, special attention should be paid to the positioning of the patient. Often times, as cancer progresses systemically, metastatic sites as well as a severely lymphedematous limbs may be a source of great pain. The patient may encounter difficulty breathing comfortably due to pulmonary complications and generalized weakness. In addition, they may report generalized global joint pain. Allowing the patient to assume a more upright position, propping up on pillows or even doing your MLD session in sitting may afford greater comfort to the patient and allow them to enjoy a greater duration of their session. The treating therapist should also note sensitivity to movement. Perhaps the patient is unable to reposition him or herself into prone lying. Adequate and effective MLD may still be administered, in this population, without accessing the posterior anastamoses. Another option may be to position the patient in a chair, having them lean slightly forward onto the treatment table propped up with pillows. This will enable access to the posterior and lateral anastamoses. Emphasizing deep diaphragmatic breathing may enhance the patient's comfort level during the MLD session. While deep breathing is a necessary component of the MLD treatment sequence, in end stage cancer, it may serve an even greater purpose; that of relaxation and pain control. You may choose to begin and end your session with diaphragmatic breathing to enable the patient to find comfort and relaxation which will be further enhanced by your MLD massage.
Skin integrity compromise may be evident in later stages of cancer, thus further necessitating modification to the CDT protocol. Massage sequences may be modified to accommodate these areas or to avoid painful and engorged lymph node beds. Bandaging techniques will likely be altered to afford greater comfort. Additional padding and decreased tension on the bandages will allow these compromised areas to remain undisturbed. Often compression garment wear is eliminated from the phase II CDT protocol due to the restrictive nature of the garment and difficulty with donning and doffing. While compressive bandages may be more cumbersome, they allow greater latitude with manipulation resulting in improved comfort over compromised areas.
Providing the caregiver with the necessary tools to maximize the CDT intervention at home is essential. Patients with advanced cancer may choose to discontinue formal therapeutic intervention. Under these circumstances it is important that the caregiver be provided as much education as is prudent to assist the patient in maintaining adequate comfort in the home environment. Many times, the primary focus of your entire plan of care may be education of the caregiver for massage techniques, deep breathing exercises, and bandaging skills. Once the caregiver is proficient in these devices, it is necessary for you as the therapist to reinforce your supportive role and availability as a resource indefinitely.
Please address questions to: Editor c/o NLN, 116 New Montgomery Street, Suite 235, San Francisco, CA 94105 or e-mail: nln@lymphnet.org. Deadlines for submissions (for the following issue) are: Feb 15, May 15, Aug 15, Nov 15.
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