Most cancer rehab clinicians are very aware of how rehab helps patients with cancer. But we’re less familiar with how cancer rehab helps patients with advanced cancer. And these patients probably need rehab EVEN MORE than your patients with early stage cancer.
November is Hospice & Palliative Care Month, so this is the perfect time to talk about a patient population very near & dear to my heart.
To recap what we’ve discussed in other episodes of TheOncoPT Podcast:
While hospice & palliative care often get lumped together, including during Hospice & Palliative Care Month in November, they’re totally not the same thing.
Palliative care improves quality of life & their families facing chronic illness by:
- Preventing & relieving symptoms
- Promoting early identification & assessment of impairments (Kasven-Gonzalez, 2010)
Meanwhile, hospice is very similar, but specifically focuses on care for individuals with advanced, life-limiting illness throughout the last phases of their life.
Per the American Cancer Society:
“The hospice philosophy accepts death as the final stage of life: it affirms life, but does not try to hasten or postpone death. Hospice care treats the person and symptoms of the disease, rather than treating the disease itself. A team of professionals work together to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice care is also family-centered – it includes the patient and the family in making decisions.”
As you can already see, hospice & palliative care have some of the same goals & approaches. Palliative care is included in hospice, but should also be a part of the entire cancer rehab continuum. (For more on this, I highly encourage you to listen to Ep. 266 with Dr. Lori Boright, where we talked all about the role of palliative care within PREHAB, which is such a mindshift from traditional cancer rehab.)
The whole goal of hospice & palliative care is to improve a patient’s quality of life by relieving symptoms & addressing impairments, while ensuring the patient & family unit is supported.
Rehab is NOT Well-Integrated in Advanced Cancer Care
Rehab is not consistently included & accessible for patients with advanced cancers. Heck, rehab is not consistently included & accessible for patients with cancer PERIOD, but I digress.
There are significant barriers to accessing rehab for our patients with advanced cancer including:
- inconsistent referral patterns
- lack of including PT in “core services”
- lack of awareness of benefits & role of rehab for these patients
- PTs themselves may not be aware of their role
- important to communicate goals of plan of care
- important to have established plan for transition to hospice/comfort measures (Wilson et al., 2017)
This ultimately means is that a “Lack of access to physical therapist services may mean more pain, more disability, longer institutionalization, more family burden and stress, and a poorer quality of remaining life” (Wilson et al., 2017)
So how do we actually incorporate this philosophy into everyday cancer rehab practice?
By starting with a true collaborative team approach.
Let’s Collaborate: Multidisciplinary Symptom Management
Patients with advanced cancer often experience a variety & multitude of side effects & impairments. Many patients have already undergone multiple rounds of cancer treatments, potentially over multiple years.
That means a lot of time & treatment exposure to develop pain, weakness, fatigue, dyspnea, anxiety, depression, & so much more (Santiago-Palma, 2001).
Beyond this laundry list of side effects & impairments, decreased physical function is associated with decreased QOL (Kim, 2005).
Now, you know that the best way to address these impairments is via a collaborative multidisciplinary team approach. Easier said than done, am I right?
But here’s where you come in:
One of the best things of being an OncoPT is getting to serve as a connector. As a PT, you spend a lot of intensive time with your patients, which means you see changes as they happen. You talk with your patient, so you know what they’re experiencing, what they’re having difficulty with.
Who better to identify impairments, potential services & professionals who can help with those impairments, & connect them than YOU?
Some examples of this include referring patients to a registered dietitian for nutritional counseling, to a psychologist/counselor for mental health issues, or even to social work.
How to Approach End of Life Care in Your Practice
First & foremost, you need to understand & believe wholeheartedly that OncoPT helps patients with advanced cancer.
I know you know that cancer rehab can benefit all patients, but sometimes we don’t actually believe what we hear. But if you won’t listen to me, take it from the overwhelming evidence:
Patients with advanced cancer often experience disability due to cancer treatments, the cancer itself, bed rest, deconditioning, neurological complications, musculoskeletal complications, & more. PT helps with all of these (Santiago-Palma, 2001; Wilson, 2017).
Rehab is beneficial, even for patients with complicated oncology histories, multiple lines, & terminal diagnoses. But what I really love is just how much we help:
Decreased quality of life is one of the most distressing experiences reported by patients with advanced cancer. Improving your patient’s mobility & function can not only relieve distressing side effects, but also improve their perceived independence, quality of life, & sense of control. Best of all, patients with higher levels of perceived support may be better able to cope with their diagnosis (Kasven-Gonzalez, 2010).
Remember: patients with terminal diagnoses SHOULD:
- have access to rehab &
- be encouraged to maintain as much function & independence as possible (Santiago-Palma, 2001)
So when you’re working with a patient who has advanced cancer, start by asking these three prompts (that I’ve adopted from Aaron LeBauer):
- What brings you in today?
- As a result, I am having difficulty with __.
- If I could snap my fingers & __ would be completely resolved, I would __.
Even if your patient has a ton of impairments, a really complicated medical history, & is nearing the end of their life, you can still help them by starting with these 3 basic prompts.
Let’s dive into some real-life patient examples I’ve seen so far in my practice:
Examples of End of Life Care in Cancer Rehab
Peter was in his mid-70s, living with metastatic prostate cancer (had multiple bony metastases, including in his humerus, lumbar spine, & pelvis). By the time he was referred to rehab, he had undergone cancer treatment for several years, including chemotherapy, immunotherapy, & more.
Peter was pretty deconditioned, weak, & unsteady at initial evaluation, which meant that he had a hard time getting up off the floor. You see, Peter was couch surfing between his adult children’s houses because he was unable to live on his own.
If you’re already a bit overwhelmed, don’t worry because I was too. So we got to work on our rehab plan, which focused on strengthening, aerobic conditioning, & balance training, even with his bony metastases.
By coordinating with social work, we were able to get Peter a MATTRESS to sleep on, rather than a sleeping bag on the floor.
Marla – metastatic breast cancer w/lymphedema
Marla was a patient with metastatic breast cancer with malignant lymphedema. So at the initial eval, her arm was a solid stage II lymphedema with fungating tumors on her affected arm & trunk. (Fungating tumors are when a tumor growing under the skin breaks through the skin & causes a wound).
Marla’s LUE lymphedema was impacting her ability to function in pretty much all areas in her life: getting dressed, preparing meals, doing basically anything for herself, & she relied heavily on her husband’s help. But she didn’t want to do that anymore.
Her oncologist gave us the all-clear, & we pursued complete decongestive therapy to help mitigate her swelling & discomfort. After a few weeks of compression bandaging & manual lymphatic drainage, we actually SIGNIFICANTLY reduced her swelling!
It’s very common for therapists to be concerned or cautious when implementing CDT for a person with metastatic disease. However, these patients can still benefit from CDT – they must just require a little extra attention, consideration, & observation from their team.
CDT, especially manual lymphatic drainage, is very helpful for managing lymphedema for patients with metastatic disease. In fact, MLD can help significantly lower pain intensity & improve breathing capacity by decreasing pressure on the diaphragm.
Furthermore, MLD “should not be withheld from patients with metastases” (Clemens, 2010).
Miguel – metastatic pancreatic cancer
Miguel was one of my very dear patients from a couple years ago – he was diagnosed with metastatic prostate cancer in June & given about 8 months to live. This was actually one of the few patients I’ve seen so far who have had a very clear life expectancy, which actually helped us set really clear goals for our plan of care.
He had two goals: he wanted to dance at his son’s wedding & he wanted to take his wife on a bucket list trip to the Grand Canyon.
I saw him over the summer & into the fall as he began chemotherapy. Some weeks were better than others, but overall, he was able to build & maintain his strength, manage his fatigue, & continue to get down on the ground to play with his baby granddaughter. In November, we discontinued our plan of care because he was going out of town. Before leaving, he told me that he danced his pants off at his son’s wedding & couldn’t wait to spend time with his wife. He died a few weeks after he returned from the Grand Canyon. We made it Miguel.
Is PT even worth it in end-of-life care?
Now there may be a part of you that is thinking, is this even worth it? Is this even something patients want to do?
The answer is a resounding YES!
Patients with terminal diagnoses often rank quality of life as one of their most important concerns. When they’re not able to get out of bed, participate in activities of daily living, be part of family time, that absolutely adversely affects their quality of life (Wilson, 2017).
What may surprise you even further is that many patients desire to participate in physical activity, because they recognize it can help them participate in ADLs, etc.
I’ll be honest: I didn’t really believe PT belonged in end of life care when I first started practicing, mainly because I didn’t SEE IT. Throughout my clinical rotation, I didn’t really encounter many patients with advanced cancer. Most of my patients were early stage, largely done with treatment, & pretty much on their way to long-term survivorship.
But once I started practicing on my own, I quickly encountered lots of patients with advanced cancer, some even in the last months & weeks of their life. It was feeling pretty heavy, & I shared this with the amazing massage therapist I worked alongside at the time. What she said totally transformed my approach to working with this patient population:
“It’s an incredible opportunity to work with somebody who has chosen to spend their precious time with you.”
And she was totally right.
Don’t get me wrong: there is sadness in cancer rehab at times. But there is also immense joy. There is an immense opportunity & privilege to work with a person whose time on this earth is so limited. You can show up in what may be the suckiest time ever for a family, passionately serve with compassion, & help make things a little bit better for the patient & their loved ones.
Incorporating rehab into end-of-life care is an ongoing challenge, but it’s totally worth it.
So now I want to hear from you – how are you implementing end-of-life care into your practice? Message me on Instagram & let me know – I’m always looking for new ways to implement better care into my practice, & I know I have something to learn from you here.
- Kasven-Gonzalez N, Souverain R, Miale S. Improving quality of life through rehabilitation in palliative care: case report. Palliat Support Care. Sep 2010;8(3):359-369.
- Wilson CM, Stiller CH, Doherty DJ, Thompson KA. The Role of Physical Therapists Within Hospice and Palliative Care in the United States and Canada. American Journal of Hospice and Palliative Medicine. 2017; 34(1) 34-41.
- Wilson CM, Mueller K, Briggs R. Physical Therapists’ Contribution to the Hospice and Palliative Care Interdisciplinary Team: A Clinical Summary. J Hospice Palliat Care Nurs. 2017; 19 (6): 588-596.
- Kim PS. Interventional cancer pain therapies. Semin Oncol 2005; 32(2):194-199.
- Santiago-Palma J, Payne R. Palliative care and rehabilitation. Cancer 2001; 92(4 Suppl): 1049-1052.
- Clemens KE, Jaspers B, Klaschik E, Nieland P. Evaluation of the clinical effectiveness of physiotherapeutic management of lymphoedema in palliative care patients. Jpn J Clin Oncol 2010;40(11):1068-72.