We are there when dying patients say goodbye: The emotional exhaustion of the palliative care team during the pandemic

CONTINUING OUR NEW SERIES:  COVID-19 AND THE PALLIATIVE CARE RESPONSE

Today, Dr Wiebke Nehls gives a clinician’s view of working on the frontline, focusing on the emotional challenges of the team. Wiebke is a senior registrar in the specialised lung disease hospital Heckeshorn in Berlin, Germany. She is responsible for the palliative care department in the hospital and a board member of the Deutsche Gesellschaft für Palliativmedizin (the German Association for Palliative Medicine).

Dr Wiebke Nehls.

When is the right time for palliative care?

Before the pandemic, I would have said: When curative treatment of a disease is no longer possible and the remaining lifetime is restricted, for example with chronic lung disease. Today, with Covid-19, we get involved when the range of therapeutic interventions gets narrowed down. For example, if Mr M, aged 84, has confirmed in his advance directive that he does not want to be put on a ventilator or resuscitated. We also treat patients with Covid-19 having severe symptoms such as dyspnoea, anxiety, or psychological distress.

Patients in the hospital are rather isolated. We try to involve the family members as much as possible, but this is not easy. I would say that only about one third of patients can have their family members at their bedside when they die. For the other patients, the deterioration of their health is so rapid that we do not even have the time to get the family in the room. And others are in quarantine or will not come because they are afraid that they might get infected as well.

We have treated couples, where one spouse has survived, and one has died. Or, the whole family may be in quarantine, with the children at home and the parents being treated in the hospital. In these cases, family members cannot visit the patients, and we try to use video-phoning to enable them to bid farewell.

When we organise such videophone calls with the family members, we are listening in. We are so close to the grief, as we never were before. Moreover, we are talking all the time with patients with a very bad prognosis. This is challenging, even with an extensive communication experience.

A case study

I talked to a very old lady on the palliative care ward, who had survived her Covid-19 infection, and had planned to go back home to live with her son. However, unfortunately her son had caught Covid-19 himself, and had died at home. The husband was receiving treatment in another hospital. The granddaughter initially told her that he was improving, but then he died as well. The health condition of the old lady had stabilized, but she did not know that both her husband and son had died. The granddaughter told her on the palliative care ward, with our support.

These distressing situations are so hard to bear.

We are already physically exhausted by the sheer amount of work. There is only very little space for the emotional burden throughout the day. But when I go home, I often have to cry. And this is happening to many of us. There are days when we can manage okay, and there are days when good things happen. For example, I recently collected my own child from the daycare centre and was presented with a bouquet of flowers and a big thank you, “because there are people helping those sick with Covid-19”. This really touched my soul.

Vaccination started recently in Germany. But I do believe that we will be challenged in February even more than now. I am worried that societal solidarity was much stronger in the first wave compared to now. We are missing that kind of resonance – that power.

Some people are not complying with social distancing and other measures put in place to prevent the spread of the virus.  For example, it is frustrating to see staff and customers in crowded supermarkets without masks. Behaviour such as this is upsetting and difficult to ignore and makes me think about the patients I care for.


Links and resources

Read more posts on the EAPC blog about Covid-19 and palliative care. Next week, Andy Bradshaw, Research Fellow in Palliative Care at the Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, UK, shares more findings from the CovPall study on Advance Care Planning during the COVID-19 pandemic.


Do you want to Submit an Abstract for the 17th EAPC World Congress Online ? Or Apply for a 2021 EAPC Researcher Award ? #EAPC 2021 will take place online with interactive live sessions 6 to 8 October 2021. Please join us!

This entry was posted in Coronavirus and palliative care, PATIENT & FAMILY CARE. Bookmark the permalink.

1 Response to We are there when dying patients say goodbye: The emotional exhaustion of the palliative care team during the pandemic

  1. Dr Louis Heyse-Moore says:

    I would like to respond to this blog in the form of a letter:

    Dear Dr Wiebke Nehls,

    I was very moved to read your blog and touched that you were prepared to be open about your feelings relating to the physically exhausting and emotionally demanding work you are doing. Rather than a scientific response, I would like to speak personally and honour your courage and that of your colleagues in providing palliative care for Covid-19 patients, despite the difficulty and intensity of the work. I want to acknowledge your commitment and to thank you.

    In a sense, it seems to me, you are also speaking for the feelings of all palliative care professionals working in similar circumstances in different countries around the world and indeed of all health care workers looking after Covid-19 patients.

    Were I ever to need palliative care in such circumstances, I would be deeply grateful for the support and expertise of people such as yourself.

    I hope that you can continue to find the inner resources to persevere with the important and worthwhile care you provide.

    Sincerely,

    Louis Heyse-Moore

    Dr Louis Heyse-Moore
    Retired consultant physician in palliative medicine
    London, UK

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