A NEW POST IN OUR CONTINUING SERIES: COVID-19 AND THE PALLIATIVE CARE RESPONSE
Today, Dr Hilde Buiting explains to what extent relationships impact quality of life during Corona times.
Since March 2020, COVID-19 has impacted globally upon everyday life and work. In the Netherlands, a 1.5 metre restriction hindered close contact for many months. One year on, this has had a tremendous impact on patients’ and close relatives’ wellbeing, particularly in patients with advanced disease. In normal circumstances, these patients would be willing to have close contact and conversations with their loved ones about their approaching death. Relationships, professional as well as private, have changed substantially under lockdown.1
Apart from changes in the organisation of health care,2 the impact of COVID-19 on relationships has influenced patients’ and close relatives’ wellbeing tremendously. It is well known that anyone who can no longer share his or her private feelings is more vulnerable to sickness and death.3 The need to form and maintain contact with at least a minimum of interpersonal relationships, constitutes a basic human need. Previous studies have shown that being connected with other persons improves both psychological, as well as physical wellbeing, and decreases the chance of depression.4 In the rest of the blog post we review the experiences of COVID for people within nursing homes and people living with cancer.
The impact of COVID for nursing home patients
In the Netherlands, it was initially the nursing home setting that was most impacted by the COVID crisis in terms of relationships, with media attention, both here and elsewhere in Europe, focusing on the tremendous impact of social isolation in nursing home patients.5 6
Social isolation does not necessarily lead to the subjective experience of loneliness, but this COVID pandemic, and the elderly population in general, has been shown to be more vulnerable towards loneliness. Being lonely can result in negative experiences of feeling alone or socially isolated from friends or family. Although different types of loneliness can be distinguished (intimate, social and collective), it seems that COVID impacted all elements of relationships and, accordingly, people’s wellbeing.
The multi-morbid nursing home patient appeared to be an easy prey for COVID-19: Within a short time, a substantial number of residents, as well as healthcare professionals, were infected and many residents died in solitude. Discussion continues as to whether loneliness was a sole contributing factor to the high frequency of (COVID-related) deaths. Especially during the first months, articles in the media questioned how the COVID-crisis could be resolved.7 It was suggested that nursing home patients had not received adequate palliative care at the end of life. 8
Anecdotal stories9 have shown how partners of nursing home patients were not allowed to visit them despite the many letters they wrote to the nursing home managers: All requests were refused, even the desire to simply take a little walk outside. They were only allowed to visit their severely ill partner in the terminal phase of life to say goodbye, sometimes after three months of complete isolation. This was probably a traumatic experience for bereaved relatives and will continue to be so.10
The impact of COVID for oncology patients
In oncology, in our on-going interview study showed that patients living longer with incurable cancer were often aware of their vulnerability during the COVID-period.11 12 Being grateful and empathic towards their busy healthcare professionals, patients with incurable cancer were often reluctant to insist on screeningmuur en huis consultations to evaluate tumour growth and further anti-cancer treatment. One year later, it seems that delayed cancer screening appointments and anti-cancer treatment is one of the results,13 14 that may lead to tumour growth, cancer recurrences and increased distress among cancer patients.15 Although the situation has improved due to the vaccination campaign, healthcare professionals still strongly recommend that patients visit a GP or medical specialist.
COVID also showed how patients with incurable cancer, and healthcare professionals, nevertheless stayed remarkably resilient. Although patients acknowledged often being more physically vulnerable to the virus, they did not accept being vulnerable in other ways. On the contrary, it seemed as if they found resilience despite as well as because of cancer. This period, for instance, positively enforced new rituals and routines. Some patients with incurable cancer discovered new hobbies or decided to write up their life story. Possibly, the lack of ‘compulsory’ contact provided space to develop hobbies, which also seemed to strengthen existing relationships.
Having found a new strategy to manage their disease, losses due to COVID-restrictions were often expressed as ‘a shame’ but almost ‘easily’ accepted. Differences across countries in how social support and relationships are established are substantial: Familial interdependence and social connectedness are for instance perceived as more important in Southern European countries, such as Italy and Spain, compared to Northern European countries, such as the Netherlands.17 The higher ranking of individualism in the Netherlands compared to other countries is also a clear sign of these cultural differences.18 Accordingly, different perceptions regarding social connectedness may also impact how the pandemic is experienced and what lessons are learnt.
We hypothesise that in establishing and encouraging good relationships first, e.g. private as well as professional, a broad basis will be laid to guarantee people’s wellbeing, within all specialties. We hope this will eventually lead to a more human situation in the nursing home setting as well as high-quality treatment decision-making throughout the disease course of severely ill cancer patients.
Ms C. Marchesi (Italy) and Mr L. Lopez Gonzalez (Spain) have recently explored this topic further.
- Sanoff HK. Managing Grief, Loss, and Connection in Oncology-What COVID-19 Has Taken. JAMA Oncol2020 doi: 10.1001/jamaoncol.2020.2839.
- Butler SM. After COVID-19: Thinking Differently About Running the Health Care System. Jama2020;323(24):2450-51. doi: 10.1001/jama.2020.8484.
- Wang HH, Wu SZ, Liu YY. Association between social support and health outcomes: a meta-analysis. Kaohsiung J Med Sci2003;19(7):345-51. doi: 10.1016/s1607-551x(09)70436-x.
- Hutcherson C, EM S, JJ G. Loving-kindness meditation increases social connectedness. Emotion2008;8(5):4.
- Ciminelli G, Garcia-Mandicó S. COVID-19 in Italy: An Analysis of Death Registry Data. Journal of public health (Oxford, England)2020;42(4):723-30. doi: 10.1093/pubmed/fdaa165.
- Schols J, Poot E, Nieuwenhuizen E, et al. Dealing with covid-19 in Dutch nursinghomes. The Journal of Nursinghome Research(2020).
- Kompanje, E. Dat hele slachtofferschap zit me dwars: Je kunt geen slachtoffer zijn van een virus-infectie. Volkskrant2020.
- Onwuteaka-Philipsen BD, Pasman HRW, Korfage IJ, et al. Dying in times of the coronavirus: An online survey among healthcare professionals about end-of-life care for patients dying with and without COVID-19 (the CO-LIVE study). Palliat Med2021;35(5):830-42.
- Koole C. Love is seeking for air. In Dutch [De liefde hapt naar lucht]. Volkskrant2021.
- Wijnhoven MN, Terpstra WE, van Rossem R, et al. Bereaved relatives’ experiences during the incurable phase of cancer: a qualitative interview study. BMJ Open2015;5(11):e009009.
- van Alphen E. Living (longer) with incurable cancer during Corona times. Thesis, University of Amsterdam, 2020.
- Campmans X. Changing body image and responsibilities in patients with prolonged incurable cancer in the Netherlands Amsterdam, Thesis Amsterdam UMC-VUmc, 2020.
- IKNL. COVID-19 en kanker. https://iknl.nl/covid-19 (2020).
- Saini KS, de Las Heras B, de Castro J, et al. Effect of the COVID-19 pandemic on cancer treatment and research. Lancet Haematol2020;7(6):e432-e35.
- Garutti M, Cortiula F, Puglisi F. Seven shades of black thoughts: COVID-9 and its psychological consequences on cancer patients. Frontiers in oncology2020;10.
- Ray U, Aziz F, Shankar A, et al. COVID-19: The Impact in Oncology Care. SN Compr Clin Med2020:1-10.
- Rodrigues M, Gierveld J, Buz J. Loneliness and the exchange of social support among older adults in Spain and the Netherlands. Ageing society2014;34, 330–354.
- Hofstede G. Culture’s Consequences, Comparing Values, Behaviors, Institutions, and Organizations Across Nations. California: Sage 2001.
Links and resources
- Contact Dr Hilde Buiting by leaving a comment below.
- Read an earlier post by Hilde on the EAPC blog: Living longer with incurable cancer.
- Coronavirus and the palliative care response: EAPC web page with links to publications and resources
- Read more posts on the EAPC blog about Covid-19 and palliative care.
EXPLORE NEW DIMENSIONS at #EAPC2021. The 17th EAPC World Congress Online offers interactive online sessions from 6 to 8 October 2021, including an entire day dedicated to Paediatric Palliative Care. And you will be able to enjoy lots of on-demand content before and after the congress dates.