Living with COVID: What We Learned from Patients with Incurable Cancer During Challenging Times

Blog by Hilde M. Buiting, Xiaochang Campmans, Evelien van Alphen, Michel van den Heuvel and Gabe S. Sonke.

Although COVID-19 impacted everyday life and destabilized the healthcare sector across the globe,1 few studies have focused on the experiences of patients with incurable cancer (infected or not). Can such patients serve as examples for understanding other populations, those with underlying illnesses as well as healthy populations? Can they show the medical community how people with underlying health conditions cope with unexpected and impactful crises, such as the COVID pandemic? We believe the answer to our questions is yes. Specifically, patients with incurable cancer have already experienced a limited life before COVID-19, since they live with the uncertainty of their disease trajectory. Therefore, their experiences are an important starting point to explore the elements impacting people’s quality of life during COVID’s uncertainties, including restrictions on movement, the extra precautions being taken to avoid infection, as well as the need for human contact in healthcare.2 This blog post is based on our personal experiences as medical practitioners, on interview data we collected,3 4 as well as on COVID-19 studies in the Netherlands and globally.5-9

 

Our Findings

Restrictions to already restricted cancer lives

Not surprisingly, some of our patients reported experiencing the effects of the first wave of COVID-19 as yet another restriction put on their already restricted lives. Living with incurable cancer during this time sometimes made them more aware of their vulnerability. Unfortunately, less information about how COVID-19 restrictions affected cancer patients’ daily lives is available for non-western, low-income countries.9 However, based on our interview data as well as personal experiences, we speculate that the additional restrictions probably impacted cancer patients in low-income countries too. Moreover, although implementation strategies varied across countries and regions (and therefore could have been less restrictive in some places), the general tendency is that public trust and commitment is higher in low-income countries than in high-income countries.10 This probably explains why low-income countries sometimes reported better results in getting their populations to comply with public health mandates. Cancer patients in these countries probably did not always perceive the COVID-19 regulations as another restriction to their already restricted lives.

My wife always joined during hospital appointments. But then, suddenly, no additional people were allowed to join. Once, while arriving at the hospital, I heard ‘Why did you not take your wife with you?’ I said, ‘Yes, that’s what we read on the paper, that this was not allowed.’ So this insecurity, or how could this be stated appropriately, these clear guidelines are missing.

(Patient 3, male, 70 years old, colon cancer)

 

Too much information, too much caution

Cancer patients’ confusion about public health guidance during the current pandemic can be regarded as another element impacting their quality of life, especially as they search for the right information with respect to their specific situation.11 Aside from the national COVID-19 restrictions and guidelines, studies show that patients living with incurable cancer sometimes take extra precautions regarding their health.12 Their precautions are logical and in line with what everyone else practiced (e.g. increasing handwashing). On the other hand, our data showed they sometimes spiraled into ‘dysfunctional’ safety behavior (e.g. increased hoarding of sanitary products or overly strict self-isolation).12 Some patients even avoided any perceived risky behaviors altogether (e.g. not going to any public spaces), which is in line with other studies.12

Nevertheless, many patients were quick to adapt and maintain a positive outlook on their present life as well as on their future. Interestingly, our patients3 4 diagnosed with incurable cancer during the pandemic often seemed to focus on factors not directly related to their treatment when asked what impacted their quality of life. Despite the fact that treatment was urgently needed to control their disease, they worried mainly about social restrictions and limited access to in-person healthcare.

If we use the phone during consultations, it will be like:

The doctor saying: ‘Do you have any more questions?’ And then I will say ‘No’. But, normally, you still have some questions when the doctors are typing on their computer and feel like ‘I should ask this right now.’

(Patient 7, female, 54 years old, lung cancer)

 

‘Living’ with COVID-19

The most interesting finding from our research was that patients worried about the healthcare system losing its human touch. To a great extent, their concerns centered on the impossibility of having human contact with their healthcare providers. In contrast, newspapers and other media constantly showed how public health professionals worried about controlling the spread of infections locally and globally.13-16 As we all know, this concern resulted in rules and restrictions that continually changed, which decreased many patients’ trust in the healthcare system and consequently their compliance with the very guidelines that were meant to protect their lives.

We have learned that despite the urgency to protect lives in this pandemic, human contact is still vital to healthcare. It is important for severely ill patients, for healthcare professionals as well as for the healthy population in any country and all over the world. Although patients must be protected when it comes to receiving timely and appropriate treatment, the pandemic revealed that we should give more attention to the human and humane elements of appropriate care, including compassion.17 This period has also resulted in a strong consensus that action is needed to bolster the emotional health of clinicians.18 Seeing patients in person is an energizing force for many physicians and is, in fact, what keeps them going – a feeling relevant to any doctor and all over the world.19

Just like the need for face-to-face contact affects healthcare globally and on multiple levels, the approach to controlling COVID-19 should also be viewed with the same expansive outlook. Adequate treatments for COVID-19 (whether vaccines or medications) are a moral obligation, a protection of our own security, health and economy, and a way to improve global health. Therefore, the COVID pandemic can be interpreted as a chance to improve the humane elements of healthcare as well as a chance to put global health on the agenda.

As the global health community looks forward to moving into the next less-restricted phase of the COVID-19 pandemic, we can learn from lessons of the previous phase. For instance, we believe that solutions to the problem of patient compliance with public health mandates can now be introduced and implemented in a relatively short amount of time. Learning from the previous COVID-19 period and using cancer patients’ experiences to improve care and coping skills on a global scale can help us right now for the next challenges ahead.

 

References

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  • Hilde M. Buiting (corresponding author: hbuiting@gmail.com): Antoni van Leeuwenhoek/Netherlands Cancer Institute, Amsterdam, the Netherlands; University Medical Center Utrecht, Utrecht, the Netherlands; University of Amsterdam, Amsterdam, the Netherlands; and O2PZ, Platform of Palliative Care, the Netherlands.
  • Xiaochang Campmans: Amsterdam UMC, VUmc, Amsterdam, the Netherlands
  • Evelien van Alphen: University of Amsterdam, Department of Anthropology, Amsterdam, the Netherlands
  • Michel van den Heuvel: Radboud University Medical Center, Department of Pulmonology, Nijmegen, the Netherlands
  • Gabe S. Sonke: University of Amsterdam, Amsterdam, the Netherlands; Antoni van Leeuwenhoek/Netherlands Cancer Institute, Department of Medical Oncology, Amsterdam, the Netherlands.

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