A summary of the main points of a fast-moving online roundtable discussion including an audience Q&A.
Families and end of life companions should be allowed into hospitals and nursing homes to be with patients who are dying of Covid-19, according to leading experts in end of life care. The highlighting of this issue formed a key part of the discussion during a virtual roundtable titled Rethinking accompaniment at the end of life.
A panel of experts discussed how accompaniment has changed in light of the coronavirus pandemic and what this might mean for the future of end of life care. The roundtable was hosted by the Centre for the Art of Dying Well at St Mary’s University on 28 September and chaired by Shelagh Fogarty of LBC Radio. Participants were encouraged to send in questions.
Baroness (llora) Finlay, professor of palliative medicine, crossbench peer and member of the All Party Parliamentary Health Group, said separating dying patients from their loved ones violated their human rights and compounded their grief.
Rather than being kept away from hospitals and nursing homes, relatives should be told how to minimise the risk of infection and make their own decisions.
“Some people have been married for 60 years and if their partner is dying, they may want to take the risk of getting Covid too. These are choices we shouldn’t deny people,” she said.
Dr Lynn Bassett, a retired healthcare chaplain, said the desire not to die alone lies deep within the human person and that isolating people when they are dying increases their fears.
Gazala Makda, an end of life doula, made the case for trained companions like herself to accompany the dying person and their family. Doulas, she said, offer “love, kindness and compassion”, support and inform relatives, and unlike healthcare professionals, have endless time to be with the patient.
“When I’m dying all I want to see is a kind person there. We can have that and not just a professional who is there for 10 minutes,” she said.
A question for the panel came from the sister of an intensive care nurse who had spoken by phone to the husband of a woman as she was dying of coronavirus. The questioner pointed out the nurse was not trained for such a role.
Baroness Finlay said she could not be trained for the situation and the most important thing was to be authentic and to show empathy.
Another question concerned the use of technology, such as iPads. Baroness Finlay said technology is merely a tool: “It doesn’t have a soul. You listen with your heart and your undivided attention. No technology can do that.”
Gazala Makda said technology now has a place but agreed that it is no substitute for a person walking alongside the dying person.
The palliative care doctor, Dr Kathryn Mannix, author of the best-selling book, With the End in Mind, explained that the role of an end of life companion is analogous to that of a midwife. The companion can help the dying person plan their care in advance and explain the process of dying to them and their loved ones.
Dr Mannix said: “People worry about the strange breathing and sounds being made by the dying person but we de-catastrophise the deathbed and help people to see what is really happening. They then know that the dying person is not groaning or drowning and they will not take away that horrible interpretation with them as they grieve. Midwifing the deathbed is something we have to do.”
Thank you to everyone who joined in with the event, in the Q&A and on Twitter. Here’s just a little of the positive feedback we’ve since received.
“Great panel and beautifully chaired by Shelagh.”
“It was a moving and insightful discussion. Many thanks. I hope it bears much fruit in the weeks and months ahead.”
“So intelligent and uplifting.”
“The speakers were so calmly inspiring on a subject which, as Kathryn Mannix said in her intro, most people have such difficulty with as dying as become so medicalised and institutionalised.”
“I can think of a number of people who would find it very valuable.”
“I was left feeling informed, energised and with a great sense of confidence that I would know what to do, who to call upon and where I could find information to support any decisions made if I were to be in the position of end of life accompaniment again. What a compassionate and supportive group of people, Shelagh Fogarty chaired very well and made sure everyone got a chance to answer questions.”
If you are interested in reading some of the presentations that were shared at the event please find them below in the section titled Related resources.