Years ago, I had a beautiful, determined Pilates student named Magdalene. She had stage 4 breast cancer. Though exercise helped to improve her mood and preserve her strength, it didn’t alter the diagnosis: terminal. Nothing matches the challenge of helping someone with an incurable illness. Sometimes, the client needs to talk; other times, what’s required is silence. Depending on the person’s disease, condition and treatment, he or she may live for weeks, months or years. It’s a life of uncertainty, and the client may be searching for a way to take charge. Research shows that the desire to be physically active is a priority almost to the end of life (Eyigor & Akdeniz 2014).
I didn’t work with Magdalene for a long time—eventually, she switched from Pilates to yoga—but we did what we could in the time we were together. My job was to listen, to keep her moving and to establish boundaries so that my personal opinions didn’t intrude on her approach to coping with cancer.
The Crucial Role of Physical Activity
Severe illnesses often impose physical disabilities that can lead to depression, poorer quality of life and higher healthcare expenditures. Progressive disability and feelings of dependency can deplete the desire to live.
Then again, research has also found that physical function appears to be a major factor in determining length and quality of life. A 2012 research review determined that physical activity was “a safe and feasible intervention in patients with advanced-stage cancer” and “a potential method to manage functional decline, symptom management, and [health-related quality of life] for this unique group” (Albrecht & Taylor 2012). A systematic review of 3,816 cancer patients found that moderate-intensity exercise significantly reduced fatigue and increased walking endurance (Mudumbi & Tang 2016).
I saw many of the benefits of exercise in my time working with Magdalene. During her struggle, she went through a range of alternative and traditional treatments. After her double mastectomy, the cancer escalated. As a member of her support team, I knew my role was to provide compassion, respect her wishes and stay flexible with our sessions.
If you train a client with a terminal diagnosis, it’s important to prepare your approach carefully.
MAKE SURE THE CLIENT’S PROGRAM IS INDIVIDUALLY TAILORED.
Take into account these variables:
- client’s age
- stage of disease
- disease location
- previous and present treatments
- life expectancy
- pain level
- cognitive/emotional status
(Eyigor & Akdeniz 2014)
BEGIN WITH AN ASSESSMENT. Assess motor deficits, range of motion, gait patterns and fall risk. Ask to contact the client’s doctor to make sure exercising is okay and to learn what recommendations and guidelines you should address (Bowen 2011). Be sure you know whom to contact in case of an emergency and where the client receives treatment.
REVIEW GOALS. Clients who are terminally ill usually want to stave off fatigue, improve feelings of well-being and manage pain. When setting goals, think beyond aerobic capacity, strength, flexibility and body composition. Always focus on enhancing daily function.
CUSTOMIZE YOUR CARE. Find out what your client’s daily life looks like now, what the client wants it to look like, what fears are coming up and what he or she would like to do in your sessions. Build a movement plan that could improve the client’s physical and psychological ability to withstand treatments. Always be thinking about reducing the anxiety associated with the illness.
Learn all you can about the disease—past treatments, current therapies, and the side effects the client is feeling today or may experience in the future. Be sure to ask your client to tell you if anything changes.
KEEP THE PROTOCOL OPEN-ENDED. There is no scientific agreement on the frequency, intensity and duration of exercises for those with a terminal diagnosis. Moreover, science hasn’t settled on which exercises are appropriate for specific disease states or how those movements should be delivered. Research is improving in this area, but much is still unknown and under-investigated (Albrecht & Taylor 2012).
Current research points to beginning with low intensity and gradually increasing intensity as aerobic capacity improves (Mudumbi & Tang 2016). American College of Sports Medicine guidelines recommend that all cancer survivors do at least 150 minutes of moderate aerobic activity or 75 minutes of vigorous aerobic activity each week and engage in resistance exercise for all major muscle groups at moderate to high intensity 2 days per week. In addition, the guidelines recommend flexibility exercises for the eight major muscle groups (Schwartz, de Heer & Bea 2017).
FOCUS ON THE POSITIVE. Movement should bring joy. The most common exercises for people who are terminally ill include aerobic activity, relaxation and breath training (Jensen et al. 2014). Joyful exercises like Pilates, tai chi, yoga, Nordic walking and dance may be useful. Just be sure to carefully adjust the intensity to the abilities of the individual.
A Different Perspective on Progression
With this population, progression might not be measured in heavier loads, extra reps or higher aerobic thresholds. Instead, it may mean withstanding pain, suffering less fatigue, having more independence, being more present and living more fully.
Unfortunately, the disease’s progress may require a client to regress. Indeed, regressions that allow your client to keep active may be the new normal, and that’s fine. Approach a decline in ability with as much positivity and support as you can. Seeing you and starting an exercise session are welcome reprieves from the illness and all that your client associates with it.
People with an incurable illness often need the guidance and direction of a physical activity program. That fact is often ignored by health and fitness professionals, which is too bad, because all of us can participate in exercise and post rehabilitation approaches within palliative care programs. Our efforts can help to alleviate symptoms, improve functional capacities, and increase quality and length of life. Always remember that activity programs for this population must be customized to individual needs, ability and preferences.
Caring All the Way
Some days, Magdalene arrived with good energy, feeling positive. Other times, she had special requests to address something that hurt or something she needed. Eventually, we began to spend more time in meditation and guided relaxation. I got to know her family and to care deeply about them.
Although I moved away a few years ago, I stayed in touch with Magdalene. The last time I saw her, she told me she was dying. Treatment options were exhausted. Nothing else could be done.
She was at peace with this, at peace with herself—and still doing yoga.
REFERENCES AND RESOURCES
Albrecht, T.A., & Taylor, A.G. 2012. Physical activity in patients with advanced-stage cancer: A systematic review of the literature. Clinical Journal of Oncology Nursing, 16 (3), 293–300.
Bowen, M. 2011. How exercise can help those who are terminally ill. HealthWorksCollective.com. Accessed Jan. 4, 2019: healthworkscollective.com/how-exercise-can-help-those-who-are-terminally-ill.
Chan, A. 2011. 4 kinds of exercise that can help cancer patients. LiveScience.com. Accessed Jan. 4, 2019: livescience.com/13837-exercise-helps-cancer-patients.html.
Eyigor, S., & Akdeniz, S. 2014. Is exercise ignored in palliative cancer patients? World Journal of Clinical Oncology, 5 (3), 554–59.
Jensen, W., et al. 2014. Physical exercise and therapy in terminally ill cancer patients: A retrospective feasibility analysis. Supportive Care in Cancer, 22 (5), 1261–68.
Kaelin, C.M., et al. 2006. The Breast Cancer Survivor’s Fitness Plan. NY: McGraw Hill Education.
Mudumbi, S.V.A., & Tang, T. 2016. Exercise effects and fatigue in cancer patients. PM&R KnowledgeNow. Accessed Jan. 4, 2019: aapmr.org/exercise-effects-and-fatigue-in-cancer-patients/.
Palacio, A., et al. 2009. Oncology and physical medicine and rehabilitation. Annals of Physical and Rehabilitation Medicine, 52 (7–8), 568–78.
Schmitz, K. 2014. The benefits of exercise for people with cancer 2014. Cancer Experience Registry Newsletter. Accessed Jan. 4, 2019: cancersupportcommunity.org/sites/default/files/uploads/our-research/CER-Newsletters/exer
Schwartz, A.L., de Heer, H.D., & Bea, J.W. 2017. Initiating exercise interventions to promote wellness in cancer patients and survivors. Accessed Jan. 16, 2018: cancernetwork.com/oncology-journal/initiating-exercise-interventions-promote-wellness-cancer-patients-and-survivors.
Yoshioka, H. 1994 Rehabilitation for the terminal cancer patient. American Journal of Physical Medicine and Rehabilitation, 73 (3), 199–206.