By Lukas Radbruch, MD
Chair of the IAHPC Board of Directors
In March 2020 the SARS-COV-2 virus reached Germany. While my wife and I were on holiday in Tanzania, sitting oceanside, I watched my Outlook calendar rapidly clear as all meetings and travel commitments were cancelled. We returned to a country in lockdown and, like many others, I learned video conferencing and digital teaching for med students, physicians, and other health care professionals. At the same time, I was doing crisis management for the palliative care teams I work with.
High-income countries have been able to realign vast health care resources to fight the pandemic, but lower- and middle-income countries (LMICs) have far fewer resources at their disposal; we anticipated a tsunami of suffering in these countries in 2020.1 An increasing number of countries are indeed suffering terribly, such as Brazil, Peru, India, and Mexico, with hundreds of thousands of COVID-related deaths. However, some LMICs seem to be much less affected, such as Tanzania, which has reported only 1,367 cases and 50 deaths related to COVID-19. This may be due to a lack of awareness or availability of testing, however, which highlights the need to treat this pandemic as a global challenge and not something that any one country can solve on its own. The IAHPC’s international online survey during COVID-19 showed that the increased workload and vulnerable position resulted in emotional distress and burnout.2 We need to ensure palliative care integration into response preparedness plans so as not to leave anyone behind.
Even in high-income countries, the pandemic has had a huge impact on hospice and palliative care. In Germany, the PallPan research project (https://pallpan.de) on the impact of the pandemic on palliative care units (PCU) found a broad range of experiences. While a few hospitals expanded their PCUs or even set up a new separate PCU for COVID-19 patients, other units were depleted of staff or even shut to increase the intensive care workforce. All services reported discussions on testing regimens and regulations for visitors, especially for dying patients. The PallPan results clearly describe the palliative care patient population as a very vulnerable group, and recommends that specialist hospice and palliative care services must be maintained even when health care resources are strained.
It appears that we are not going to get rid of COVID-19 soon: no one seems immune to its impact and changes the pandemic has on our personal way of life and society in general. Do you still feel comfortable when somebody tries to shake your hand, or hug you? Are you avoiding crowds, or public transit?
There is also a major impact on society, including long-term effects on informal caregivers and on bereavement. One published PallPan article describes problems that result when people are unable to say farewell because their loved ones are dying alone in isolation in intensive care units or nursing homes during lockdown.3 We do not yet fully understand the middle- and long-term effects of the contact restrictions, especially for bereaved family members and informal caregivers.
In 2020, we thought that strict safety and protection measures in place would break the pandemic wave. Last New Year’s Eve, we thought that vaccinations would be the game changer. With the highly contagious Omicron variant surging in 2022, a variant that responds less well to available vaccinations, there seems to be little light at the end of the tunnel.
And yet, while the pandemic has changed the concept and praxis of hospice and palliative care, this may be the time to develop resilience, confidence, and hope.
For a few years, our research group has been part of a research consortium on resilience and spirituality. The group includes researchers from the fields of psychosomatic medicine, theology, philosophy, and sociology. It has been really interesting, and sometimes challenging as well. We are still trying to understand each other, as the differences between the research concepts and methodologies in these fields are profound. Just trying to agree on a common understanding of, for example, a methodology such as ground theory may take hours of heated discussion.
On the other hand, collaboration between these vastly different research fields is very rewarding, and facilitates thinking outside the box. For example, we discussed whether resilience is a character trait (either you are resilient or you are not), or a process (you can become resilient) or an outcome (resilience is achieved if you are mentally well after a crisis). We agreed that we will treat resilience as a process, and that this process is initiated by a crisis.4 There is no resilience without a crisis. Resilience does not mean bouncing back like a spring, with everything returning to normal after a crisis. Resilience can mean that a person adapts and performs differently after a crisis, but is able to cope somehow. This is probably the norm for patients in palliative care, where progressive diseases make it impossible to go back to “normal.” The process of adaptation often is related to regaining an individual narrative and restoring a sense of coherence. Interestingly, we found a lot of publications in the palliative care literature on resilience in health care professionals (mostly with the idea of resilience preventing burnout), but nothing on resilience in palliative care patients or informal caregivers, which I would have thought to be just as important.
In the summer of 2020, I participated in a major German research project that involved an online survey on the impact of the pandemic on health care workers (HCWs). Moral distress was reported by all nurses at levels that, before the pandemic, were only experienced by nurses in intensive or critical care units.5 A higher sense of coherence (SOC) and perceived social support appeared to be beneficial for mental health of HCWs during the pandemic. Higher SOC was strongly associated with fewer anxiety and depression symptoms.6
We have managed to solicit funding for long-term repetitions of this survey. We thought that the pandemic would be an excellent opportunity to investigate how such a crisis is overcome. However, now it seems to have turned into an investigation of an ongoing and continuous crisis, as virus variants propel us through fourth and fifth waves of the pandemic.
More recently, we had some discussions on hope, confidence, and optimism. These three concepts seem similar, but have differences. Optimism can be defined as faith that all will turn out well; as German philosopher Gottfried Leibniz said, we are living in the best of all possible worlds. The optimist expects a positive outcome, without having to contribute personally. The inherent danger becomes apparent when dire circumstances are ignored, or positive thinking fails to acknowledge burden and suffering.
Hope is most often aimed at a positive outcome, and this always carries a risk of disillusion and disappointment if these hopes are dashed. In contrast, confidence takes the options of a bad outcome into account. Confidence looks at the world—and how it can be managed—with a forward vision, aimed at the future without knowing it or having clear expectations. It tries to balance hopeful visions with realistic worries.
I like to think that confidence (similar to resilience) is a process that can be facilitated by health care professionals, such as allowing patients and families to cope by finding meaning in their lives.
I would hope that thinking about and discussing these concepts will help us to use them sparingly, but at the right time and place, to support patients and families to cope with adverse conditions, no matter the outcome.
Resilience and confidence will also help us as health care professionals, even as the pandemic changes the concept and practice of palliative care. Resilience does not mean that we can go back to our pre-pandemic ways. For example, we should continue with the improvements in telemedicine and digital teaching that the pandemic forced upon us. We will need much less travelling for international meetings as we have become so familiar with video conferences, but hopefully we will be able to meet again and interact socially to foster friendships in our growing international community. I do hope that you share my confidence that we can do this: that we can maintain or continue to develop hospice and palliative care services to all patients in need, and that we can keep palliative care on the universal health care agenda during—or in spite of—the pandemic.
References
1. Radbruch L, Knaul FM, de Lima L, de Joncheere C, Bhadelia A. The Key Role of Palliative Care in Response to the COVID-19 Tsunami of Suffering. Lancet 2020; 395(10235): 1467-1469.
2. Pastrana T, De Lima L, Pettus K, Ramsey A, Napier G, Wenk R, et al. The Impact of COVID-19 on Palliative Care Workers across the World: A qualitative analysis of responses to open-ended questions. Palliat Support Care 2021; 19(2): 187-192.
3. Schloesser K, Simon ST, Pauli B, Voltz R, Jung N, Leisse C, et al. "Saying Goodbye All Alone with No Close Support Was Difficult"—Dying during the COVID-19 pandemic: an online survey among bereaved relatives about end-of-life care for patients with or without SARS-CoV2 infection. BMC Health Serv Res 2021; 21(1): 998.
4. Hiebel N, Rabe M, Maus K, Peusquens F, Radbruch L, Geiser F. Resilience in Adult Health Science Revisited: A narrative review synthesis of process-oriented approaches. Front Psychol 2021; 12: 659395.
5. Schneider JN, Hiebel N, Kriegsmann-Rabe M, Schmuck J, Erim Y, Morawa E, et al. Moral Distress in Hospitals During the First Wave of the COVID-19 Pandemic: A web-based survey among 3,293 healthcare workers within the German Network University Medicine. Front Psychol 2021; 12: 775204.
6. Schmuck J, Hiebel N, Rabe M, Schneider J, Erim Y, Morawa E, et al. Sense of Coherence, Social Support and Religiosity as Resources for Medical Personnel during the COVID-19 Pandemic: A web-based survey among 4324 health care workers within the German Network University Medicine. PLoS One 2021; 16(7): e0255211.
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