Guiding people with advanced cancer through COVID-19
Mary van Zyl gives a clinical nurse specialist’s perspective on communicating with people with cancer and their families during the COVID-19 pandemic
At the time of writing we are a few weeks into restriction of movement and full isolation for ‘high risk’ individuals to protect us all from COVID-19.
The consequences of such momentous change is clear. But the wave of change in oncology and oncology nursing practice requires a moment of reflection.
People with cancer face new levels of stress and anxiety. Most have received a letter from the government detailing the need for isolation for 12 weeks.
Stay away from your extended family, they have been told, stay home, and don’t do the things you enjoy or go to the places that make you happy. Sadly, some of these patients are in the last six months of their lives.
And what of those who are in the middle of anti-cancer therapy? Should they isolate but attend hospital, where there are warning signs everywhere and staff are wearing masks? Should they continue with immune-suppressing drugs in the middle of a pandemic or take their chances off-treatment?
Couples on a cancer journey together have been forced apart
This decision is sometimes taken away from patients; at other times they have to confront the incurable nature of their disease, adding a frightening weight of distress.
The usual practice of asking patients to bring a loved one with them for scan results has been replaced by security on hospital entrances blocking the way to any non-patients.
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Some of the most vulnerable patients are now more alone than ever just when they need their loved ones most. Couples who have experienced a cancer journey together have been forced apart.
Attempts have been made to overcome this heartbreaking reality. Patients can call their loved one, using video or speaker phone, to include them in challenging conversations. But the difficulties are then magnified by the question: ‘So, doctor, what next?’
Sadly there are no clinical trials are recruiting at this time and there are uncertainties about whether any standard lines of anti-cancer drugs are left available to patients. Patients and families can be left devastated as a result.
Nurses’ communication skills need to adapt to a new reality
The nature of nursing care is to be up close and personal. For example, there are clinical interactions that require physical touching of patients and verbal interactions. In normal circumstances, these would involve a nurse crouching down next to a patient or sitting close enough that voice levels are almost at a whisper to protect confidentiality. Now, it feels as though all our honed communication skills must adapt to an uncomfortable and awkward new reality.
Conversations take place at an unnatural distance and while wearing a mask, which feels cold and conceals emotion. We must suppress the urge to hug the crying patient because there is no touching, nor even sitting near them.
But self-preservation kicks in and, although we feel ashamed to witness the raw anguish caused by advancing cancer, we’re distracted by trying to calculate if we are distancing enough.
And we can be left feeling guilty and wondering whether we have given effective holistic care. Job satisfaction has been replaced with fear and tension.
So where does this leave the nurse’s role? How can we quickly adapt to ensure that our patients feel listened to, cared for and not forgotten? And how can we adapt our nursing practice to keep us safe and give us pride in our work?
Patients must be allowed to express fears, frustrations and even anger
We need to actively open up dialogue with patients and their families over the phone. With many people being told not to come into hospital, we still need to reach out and discuss their concerns.
We should also seek permission to support family members who may be feeling pushed out and alone.
We must allow patients to express fears, frustrations and even anger at how COVID-19 is affecting their access to cancer treatment. So many are left in limbo, waiting for a safer time to embark on treatment, but what happens in the meantime is fraught with uncertainty.
There have been occasions in the past few weeks where patients have said to me that they feel discarded or have dropped low down the pecking order. Others, by contrast, have felt more resilient. They have accepted that they have no control over the pandemic or their advanced disease and are simply keen to stay out of harm’s way.
Either way, ongoing contact with hospital or community teams via telephone support will be imperative to try to reduce psychological distress.
But there are obvious limitations to telephone communication, which is why much of our practice is not routinely undertaken over the phone.
How to conduct telephone calls to patients and families
Reflecting on calls I have made and received over the last few weeks, and sharing some thoughts on preparing, framing and concluding the call, may help others with the ultimate purpose of supporting patients:
- Preparing. Know your patient. Ensure you have access to medical notes and previous interactions, and that you understand the patient’s social situation, and the multidisciplinary team’s discussions and plan.
- Framing. The patient may not be expecting your call so ensure it is appropriate to continue and find out who is with them at home. What is the patient doing and are they free to speak to you? Explain clearly at the beginning the purpose of your call because the patient is likely to be anxious about receiving any communication from the hospital.
- Concluding. Summarise the call with the patient and address any concerns or questions. Check they understand who to contact should they experience any symptoms related to cancer or COVID-19. Ask if the patient is happy to be contacted again and schedule a call if appropriate.
There have been times when I have found these conversations distressing. Being unable to offer what the patient wants, and having to absorb any anger and disappointment, can lead to a sense of futility and helplessness.
Nurses can listen, care and stay in touch
So it is important to acknowledge the limitations of telephone support. But, as nurses, we learn not to take things personally and although we can offer empathy we must accept that we cannot change the outcome for the patient.
We won’t have all the answers, nor can we reassure patients that it’s all going to be fine. But we can listen, we can care and we can stay in touch.
These unprecedented times require us all to look after each other. Our own fears and concerns for our personal safety are real and we need to talk about them.
We need to ensure we take time to debrief after difficult interactions, talk to colleagues and escalate situations where it is felt a patient is not coping.
The well-being of staff falls under the duty of an employer, but there are useful resources available on the RCN website.
About the author
Mary van Zyl is a clinical nurse specialist supporting cancer patients participating in phase I clinical trials, based in a drug development unit at The Royal Marsden Hospital, London. She is in the final year of a master’s degree in oncology and radiotherapy at Sheffield Hallam University
Thanks to the cancer nursing specialists and teams in the drug development unit at The Royal Marsden Hospital, with special thanks to Breda Cooley, Janet Hanwell, Julia Lai-Kwon and Juanita Lopez