Alison O'Connor: Carers discuss the post-pandemic world they want for patients

When it comes to a global pandemic the understandable temptation, after living through much of one, is to move on and leave the entire mess in the rearview mirror. 

There is no doubt but that there are lessons, including some very valuable ones, to be learned from our experiences of the past 20 months.

Are we the same? This was a question asked at a recent Irish Hospice Foundation conference on dying, death, and bereavement. 

Orla Keegan, IHF head of education and bereavement, described it well as “the landscape of loss we are currently in” after the many tensions and dilemmas — many of them around the deathbed — brought about by Covid.

All “the restrictions and the manner of deaths” during Covid meant that a higher proportion of people who have been bereaved will need professional help, she said. 

In total there have been over 5,300 deaths related to Covid in Ireland.

Indeed the professionals themselves, used to dealing every day with dying, also bear the scars of Covid, Bettina Korn, end-of-life care co-ordinator, Hospice Friendly Hospital programme at St James’s Hospital in Dublin, told the conference.

She will never forget the first patient who died of Covid in the hospital towards the end of March 2020. 

We lived in fear. Many of us had to make very difficult decisions.

They grappled with how to handle end-of-life care in a pandemic. 

She described trying to interact with seriously ill people while wearing a gown, goggles, hairnet, and gloves. 

“It was not a way to relate and deal with patients.” 

Teamwork among healthcare workers had to develop very quickly. Staff came off different wards on to dedicated Covid wards, often not knowing each other and sometimes “put together at the drop of a hat, but it had to work like clockwork”.

“When I think of them, I think of the compassion they brought to their patients — patients were all in single rooms, all isolated. It was compassion beyond anything I’ve ever seen. They really saw themselves as a team, as a community of people.”

For many patients, Ms Korn explained, the healthcare workers were the only human being that they had contact with, so sometimes they struggled with being a proxy family member as well as doing their job. 

“While they really wanted to do it, it can take its toll and it is not the same for a patient as having a family member.”

Showing a photo of a ventilated patient in ICU and staff in full protective gear, she said they “looked like aliens” but still managed to have human connections. 

What might otherwise have taken years to develop happened practically overnight with the establishment of a virtual visiting service. 

Electronic devices were an issue at the start but members of the public dropped tablets at the front door of the hospital.

We quickly learned we had to open visiting on compassionate grounds because people need to be surrounded by their loved ones when they are on their last journey. 

"We also realised very quickly that visiting is not about popping in and saying hello, it is really about family presence and having those people around you that matter the most to you.”

They found different ways to combat isolation — signing up for music stations and online movies. “People came up with the goods and provided the support and the sponsorship,” explained Ms Korn.

Families would send in playlists for their family member. “Sometimes they shared the music and listened together and that really brought an awful lot of joy to people.”

She recalled the hundreds of little knitted hearts that were made and donated — each one with a match in the same colour. 

The idea is that one heart is given to the patient to hold onto and the other stays with the family.

This was a soft, non-clinical, non-medical connection between the people that love each other — particularly patients with Covid who would not have had an open coffin/funeral. That was a great source of solace for relatives that they knew their loved ones was holding this soft heart.

After each Covid death, the hospital’s social work department would make a phone call to the patient’s family, as well as sending a sympathy card and bereavement support information.

Ms Korn added: “I want to say to people listening in today, we remember every single patient. You could ask each of those four nurses there [she said, pointing to a photograph] who died on your ward, and what it was like for them. The deaths have really had an impact on every single staff member and we remember people and patients because it is just so important.”

As far as geriatrician Prof Cillian Twomey is concerned, there are a host of lessons to be taken from the pandemic. A member of the nursing homes expert panel which examined how most coronavirus deaths occurred in nursing homes, he told the conference a revised model of care for older people must be found.

The State made an error 25 years ago moving from predominantly public-funded care to private “warehouses” where it “abrogated its treatment of frail, elderly people to the private sector”, he said.

Our current system of care is “not fit for purpose”, said Prof Twomey, adding: “We don’t need more 150-bed factories [nursing homes]”. 

Rather, why not have people in five to six bedded houses, not in an institution but in their own communities. “We need to change the model and change it quickly.”

IN his contribution, Dr Gordon Caldwell addressed conversations had with elderly patients around ‘do not attempt cardiopulmonary resuscitation’ decisions. 

Looking back, some of his most horrific career memories are of CPR being done on people “that should never have started”.

Dr Caldwell, a consultant physician at Lorn and Islands District General Hospital, part of NHS Highlands, said that in cardiac arrest, the heart suddenly stops first and CPR may work to restore the heart before irreversible damage is done to the brain and organs.

But he spoke of “inappropriate CPR” for people who are simply too frail for it. The patient’s health would only be restored to the condition “existing one beat before the heart stopped”.

He recalled a junior doctor on his team speaking to an elderly patient. The patient was told, “You are not dying, but your body is in frail health. One day your health shall deteriorate badly and we shall know that you are dying. What should we do for you then?”

He said that’s a very different conversation from saying to someone, “When your heart stops we are not going to resuscitate you.”

He said most patients, when asked the first way, would say, “I’ve had a full life doctor, let me go.”

“If we frame it as ‘I want to die a peaceful death, treat me with kindness compassion and dignity’, that might be something that someone might want to wear as a wristband,” he told the conference.

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