This week, I encountered a situation that weighs heavily on me as a nurse but raises an important question in the oncology world. As a clinical trial nurse, we typically only see our patients at research-specific visits. It’s likely that several weeks can go by without any contact, making each visit a critical touchpoint. Imagine seeing a patient one week looking stable and well, only to have them return a few weeks later barely resembling the person you remember.
I recently saw a patient with advanced stage cancer who arrived for treatment in a state that was deeply concerning. He lives in a nursing home, has family, but they rely on the facility to provide his daily care. Due to his disease, he has lost the ability to speak, communicating only through writing or text.
When he arrived, it was immediately clear something was wrong. His clothes were unclean, his overall hygiene neglected. His blood pressure was alarmingly low, his upper extremity was swollen, and he had open sores and a rash on his body. These were all new or worsening findings since his last visit only three weeks prior. As a nurse, his condition raised several serious concerns- Was this a DVT? Was he developing complications from his treatment? Was he simply being neglected?
This situation was already alarming, but there was another layer to his care that made it even more troubling, he is on a clinical trial. That means he is receiving an investigational treatment, one that requires close monitoring for potential side effects. His participation in the trial means he should be under even more careful observation, yet he arrived looking as though no one had been watching at all.
Once stabilized, he was discharged back to the nursing home, back to the place where these concerns had seemingly gone unnoticed.
Are Nursing Homes Prepared for Cancer Patients—Especially Those in Clinical Trials?
As a nurse, this is troubling on multiple levels. This patient is living in a facility that should be monitoring his condition, ensuring he receives proper care, yet his state upon arrival spoke volumes. What’s more alarming is that he passed through multiple levels of care without these issues being flagged as serious concerns before reaching us.
This raises critical questions about the care of cancer patients in nursing homes, especially those enrolled in clinical trials.
- Do these facilities have the expertise to recognize and report issues that could be related to trial medications?
- Do they know what side effects to watch for, or how to differentiate between expected reactions and concerning complications?
- Are trial expectations and potential side effects clearly communicated to the nursing home staff by the research team?
In many cases, the answer is no. Clinical trials require strict monitoring and adherence to protocols, but when a patient is living in a nursing home, who is responsible for ensuring trial-related concerns are identified and reported? The research team? The nursing home staff? The family?
What Can We Do as Doctors and Nurses to Help These Patients?
As healthcare providers, we must take an active role in bridging the gap between cancer care, clinical trials, and nursing home settings. These patients cannot advocate for themselves, so it is our responsibility to equip their families with the knowledge and tools needed to ensure they receive appropriate care. Here are some concrete steps we can take:
Communicate with Family Members
We should make it a point to speak directly with family members at each visit, even if their loved one is living in a facility. Families often assume that nursing home staff are monitoring everything, but we know that’s not always the case. Encouraging them to stay involved and engaged can make a difference in early detection of complications.
Educate Families on Recognizing Side Effects
Many side effects of cancer treatments, such as swelling, rashes, infections, weight loss, dehydration, or cognitive changes, may not seem urgent to an untrained eye but can have serious consequences. We must take the time to teach families what to watch for and emphasize when to seek medical attention. Even a quick educational handout or a five-minute conversation at the end of an appointment could empower them to take action.
Encourage Direct Communication with the Oncologist or Trial Nurse
Families should not rely solely on the nursing home to communicate with their loved one’s oncology team. Instead, we should encourage them to reach out directly to the oncologist or clinical trial nurse if they notice anything concerning. A simple phone call could prevent a minor issue from escalating into a life-threatening complication.
Establish a Clear Monitoring Plan
For patients on clinical trials, we should consider proactively reaching out to nursing homes to discuss expectations for care. Providing a list of trial-specific side effects and guidance on when to contact the research team could improve monitoring and prevent critical issues from being overlooked.
Where Do We Go From Here?
Situations like this make me wonder, should we have oncology-trained staff in nursing homes to monitor cancer patients more closely? Should clinical trial participants receive additional oversight if they reside in long-term care? How can we, as healthcare professionals, work toward bridging these gaps?
At the very least, we need to raise awareness.
- Families must know that their loved ones in nursing homes, especially those battling cancer or participating in clinical trials, need advocacy.
- Nurses and medical teams must recognize the gaps in care that can occur in these settings.
- Research teams must consider how they can better collaborate with nursing home staff to ensure trial patients receive appropriate monitoring.
No cancer patient should ever arrive at a treatment center looking like they’ve been forgotten. We owe them more than that.
Let’s Start the Conversation
If you’ve experienced similar challenges with nursing home care for a loved one, I’d love to hear your thoughts. How do you advocate for family members in these settings? What changes do you think are necessary for cancer patients, especially those on clinical trials, in nursing homes?
Let’s talk about it. Because cancer care doesn’t end at the hospital doors, it continues in every place our patients call home.
About the author
Karin Donaldson is an oncology nurse and clinical research supervisor with expertise in cellular therapy, clinical trials, and patient advocacy. Passionate about innovation, she bridges research and patient care while also sharing insights through medical writing and community service.
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