Dame Cecily Saunders, founder of the modern hospice movement, said: "How people die remains in the memory of those that live on." Therefore, a good death, however you imagine that to be, can be an immense comfort to those left behind.
There is no comfort in coronavirus; it has separated us in life and continues to drive us apart in death.
Hundreds have died in Ireland from Covid-19. Hundreds more will. Irrespective of their ages or underlying conditions, they all leave behind loved ones, families and friends.
Coronavirus has resulted in families grieving in isolation at a time when large communities would normally wrap their arms around them and mind them in their grief.
Visiting restrictions and strict infection control policies that must be implemented in a Covid-19 death means that the rituals of end-of-life care such as holding a loved one’s hand as they breathe their last are no longer possible, and the harsh reality is that some people will die alone.
New rules on funerals for all those who currently die, not just those taken by Covid-19, limit attendees to just 10 people. Mourners must observe social distancing and refrain from handshaking and hugging. All the age-old Irish rituals synonymous with remembering the dead and supporting the bereaved have been taken from us.
In an effort to help people cope with death, dying and bereavement in these unprecedented times, the Irish Hospice Foundation (IHF) has launched a new Care & Inform online hub. The online resource, available at hospicefoundation.ie, provides reliable and up-to-date information in the areas of end-of-life and bereavement care and planning a funeral in the era of Covid-19.
It includes a guide titled “Acknowledging and coping with grief from a Covid-19 death”. In this, the IHF provides help on dealing with issues such as unexpected death from coronavirus and not being with a loved one when they die.
Dr Paul Gregan is a GP who also works as a consultant in palliative medicine at Blackrock Hospice in Dublin. He explained that of the 20 per cent of people with Covid-19 who end up in hospital (it's important to remember that 80 per cent of people who get the virus will have mild illness and make a full recovery), approximately a quarter (or 5 per cent of those infected) will need more intensive treatment and, of those, about half (or 2.5 to 3 per cent of those infected) will die.
Different strategies
For Dr Gregan and his many colleagues in palliative medicine in Ireland, Covid-19 has meant that they have had to develop different strategies for their patients depending on the place of death: in a hospital setting (in ICU, the emergency department or general ward), in a nursing home or at home.
“The problem with Covid obviously is that people with Covid positivity are infectious. We are not really sure if they are infectious at their death but we have to assume that they are. The studies seem to indicate that they are more infectious earlier in the disease but they could well be infectious to their dying and beyond,” Dr Gregan said.
He said that managing people dying at home with Covid-19 was most challenging because due to infection control, very few healthcare professionals can visit the house.
“Palliative care teams are calling out to see people dying at home... but they are dressed in full PPE and it’s a difficult visit for them and a difficult experience for the person as well.”
The real difficulty is balancing the need to visit versus the need to protect the family member
Dr Gregan explained that in nursing homes there were trained staff that can administer medication and there was guidance available on managing end-of-life care in these settings.
He was keen to stress, however, that not everyone who gets Covid-19 in a nursing home will die and, in fact, in some of the larger outbreaks, he said that the numbers who died were “ a lot smaller” than the overall number who contracted the disease.
Coupled with managing patients with Covid 19, palliative care teams are also providing the usual palliative care to non-Covid patients many of whom are cocooning at home.
In the era of Covid-19, end-of-life care has changed for everyone – patients, family members and palliative care teams alike.
Daily basis
At Blackrock Hospice, where Dr Gregan works, staff are phoning family members on a daily basis to keep them updated on their loved ones who they cannot visit due to restrictions.
The guidelines around who if anyone can stay with their relative who is dying from Covid-19 are different in different settings and indeed it seems across hospitals.
“Staff are hugely upset that people can’t visit because they recognise the need to visit, and the real difficulty is balancing the need to visit versus the need to protect the family member. People are so caring that they forget that their family member is infectious, they have Covid-19, and you are trying to balance the need to be there versus the need not to be there and that is a very, very difficult,” Dr Gregan said.
According to Dr Gregan, while every situation is different, there may be some cases where loved ones can be present in the room for limited periods of time or to say a last goodbye.
Visits are at a safe distance. If you are in a room with someone with Covid-19 for more than 15 minutes you are considered a contact and must go home and self-isolate for 14 days. Dr Gregan explained that while palliative care staff have PPE, they must be judicious in how they use it.
“Staff are trying to manage in a very humane way the needs for relatives to be there versus the needs to protect them,” he said.
The recent photograph of a Dublin man who, due to Covid-19 restrictions, was forced to say his final farewell to his brother standing on a bench outside the window of his hospital room was a perfectly devastating portrait of death, dying and grief in the era of Covid-19.
We are all taking this hit with enormous sorrow but we are all taking it for each other and it is incredibly hard
Dr Gregan said it was “heartbreaking” as a palliative care physician to see that photograph. “You understand his need to be there versus his need to be distant and he was trying to balance it the best he could… I thought that was a very poignant picture.”
While we may not be able to be present at the time of death or in some circumstances to say goodbye, technology can help. A recent call for people to donate iPads and tablets by Dr Eóin Tiernan, a consultant in palliative medicine at St Vincent’s and the Beacon hospitals in Dublin, has resulted in hundreds of generous donations, allowing families to be united in the final hours.
Struggling to understand
Dr Kathryn Mannix, former palliative care physician, author and full-time campaigner for better public understanding of dying, is like the rest of us struggling to understand the reality of death and dying the era of Covid-19.
The author of With the End in Mind: Dying, Death and Wisdom in an Age of Denial, which was shortlisted for the 2018 Wellcome Book Prize, Dr Mannix said the current situation was “absolutely unique”.
People cannot be with their loved ones due to the real threat of infection from Covid-19, and healthcare staff and other members of the family’s extended community also need to be protected. “We are all taking this hit with enormous sorrow but we are all taking it for each other and it is incredibly hard,” she said.
“Its hugely different we can’t be present at the bedside and because we can’t be present at the bedside we don’t know the story, and stories are how we make sense of things.”
In order to help bereaved families comprehend the story of their loved one’s death, Dr Mannix said she was advocating for staff to note whether the dying person was awake or asleep when carrying out their routine observations so they can tell family members the story of their last hours; help them narrate the death.
She also said that for those who have a tradition of gathering at a death and respecting the wake, this would be “an enormous loss”.
Dr Mannix urged people not to be on their own in their grief. “Don’t be on your own with it. Obviously there are times when it is nice to just be quiet and to reflect on your own, but then reach out, call a friend, phone the family, be sad together... and when we are being sad together, stick the kettle on and have a cup of tea because that is what we do.
“We have spent a century pretending the nobody is going to die and not talking about it, and suddenly all that wisdom that we used to have becomes necessary again. So let’s start to talk about it, let’s start to think about it, let’s find a way of having those conversations.”
Read: Supporting grieving bereaved children during this pandemic
