IN THE PAST two years, hospices and palliative care teams have been at the forefront of the pandemic, mostly caring for people who are at the greatest risk of dying if they contracted Covid-19.
The meaning of what palliative is and what hospices do has changed: though it first meant caring for people at the very end of their life, it later broadened out to include cancer patients. In more recent years, it has changed to mean caring for people at much earlier stages of their illness.
Among the conditions of people who receive palliative care are Motor Neuron Disease, cardiac disease, end-stage kidney disease, and dementia.
But the pandemic greatly altered how palliative care operates: people felt safer at home, and so less people went into hospices to be cared for. Care teams had to have a very good reason to enter people’s homes. And efforts to comfort people was hampered by PPE and social-distancing measures.
Necessary for at-risk patients, but difficult for families already in touch situations.
During the pandemic, families became fearful because the people being cared for were in the highest risk categories if they contracted Covid-19. Any face-to-face palliative care had to be done only in situations where there was a “very good reason”.
The very things that made these situations easier – a smile, a casual chat, a pat on the shoulder – all stopped during the pandemic to try to keep people safe.
There were also difficult decisions and situations around wearing full PPE and masks in order to keep those who needed to be cared for safe – sometimes because donning the plastic layers was against the wishes of that person’s family.
Dr Stephen Higgins has spent 20 years working in the area of palliative care. He’s now the medical director of Our Lady’s Hospice and Care Services which has two hospices in Dublin and one in Co Wicklow, opened in December 2020.
Dr Higgins also works at the Department of Palliative Medicine at Tallaght Hospital, where he sees a lot of patients with cancer, but half the patients would have lung disease, liver disease, or neurological conditions.
He said of the hospice’s work during the pandemic that “there had to be a very good reason for us to be face to face with the patient. But, on the other hand, there were patients where we absolutely had to go to the house, particularly for patients at the very end of life.”
As part of the hospice’s response to Covid-19, over 9,400 visits were made to people’s homes in Dublin and Wicklow, as well as over 7,000 virtual reviews.
Dr Higgins told The Journal:
It also took a lot from what we do. Palliative care is all about communication. It’s about establishing links. It’s about warmth. It’s about eye contact. It’s about the handshake, all those things that suddenly disappeared. And what we did became a lot colder because of Covid. It has warmed up slowly over the months, but it’s still only lukewarm.
He said that visitations were tricky to manage, and was something “we took for granted” before the pandemic as there weren’t visiting hours before the pandemic.
“I can’t overstate how important for the patients we look after when they’re an in-patient – they need to support their families.
“And suddenly, visitors were greatly restricted: restricted in numbers, restricted when they could come in. And when the visitors came in themselves, they have to be wearing PPE when they came into the room to see people. It was a completely different dynamic and that loss of warmth I think was huge.”
Though visits were never stopped completely, they were for a time reserved only for the most ill patients. He said that deciding what is too risky to do is still the trickiest thing to manage at the moment.
“Clearly, not everybody saw these things the same. So one staff member or one family member or one patient might think was safe or reasonable might be very different from what another staff member or family member or patient thinks.”
He said that it might be a long time before we know the effect of living through Covid-19 has had on us all – particularly those who couldn’t grieve properly because of restrictions, or because supports that were there previously were down to a “tiny fraction”.
He says that he does feel “there is a tiredness and a real weariness” among healthcare staff after two years of the pandemic, which is the result of working “in a more stressful way”.
Families would say ‘ah you don’t have to wear your mask’
Our Lady’s Hospice’s Community Palliative Care Team works with hospitals and GPs to care for people in their homes, which which continued during the pandemic, and demand for which increased 25% as people were afraid of being left alone in hospital.
Tina Crowley has worked for Our Lady’s Hospice since 1998, but has been on the Community Palliative Care Team since 2013.
“The patients we see, they’re not actively dying,” she told The Journal.
For some of these patients, we may be with them when they’re symptomatic and things are going on for them. And then we manage to resolve the symptoms they have or we manage to get them back to a baseline that they’re comfortable again, and we’re able to even discharge them from our service.”
“People may have an illness that’s not curative, but with treatment they’re able to manage their illness and disease at that level for quite a period.”
As part of her daily job, Crowley said she and her palliative care team get a caseload each day, and they assess each patients symptoms – either physical or psychosocial. They support and manage and respond to the needs of each patient, and alleviate any fears and concerns their family have.
“It’s meeting the patient where they are at,” she said.
Managing those needs became much more difficult during the pandemic, however – they decided who needed a home visit and who needed a virtual visit, but home visits were kept down to a minimum for safety reasons.
Masks and PPE were also needed for house visits, which Crowley said she viewed as a barrier to care.
“Yes, it was needed and a lot of families respected that,” she said, “but say, you could go into the house and the family members would say ‘Ah you don’t have to wear your mask in here’.
And we’d say ‘Well, I’m very sorry, but we do and we have to wear PPE and we have to ask you to wear your masks’. And straight away it’s not that same openness that we would have had gone into a house in before the pandemic.
She said that when some of her colleagues who were visiting nursing homes and saw all the staff dressed up in PPE, it was described as “like an out-of-body experience”.
“Looking at all these people going around in this PPE and walking into it, it was like ‘This isn’t for real what’s happening to us’, you know?”
Crowley said that they are trying to be as empathetic and compassionate as you can, but if someone gets distressed, you can’t sit down beside someone or give them a hug.
“All that had to stop and we had to be very careful of what we were doing.”
She said that their time liasing with GPs became more difficult during the pandemic as well, as they became very busy with Covid and the vaccine rollout.
Dr Higgins noted of working during the pandemic: “Life goes on and life has to go on. Maybe that’s what we’re seeing – initially, we thought ‘This is Covid, then we’ll be through Covid and we’ll get back to normal’ but maybe that isn’t the way it is. Maybe it will be living with Covid. You have to keep going, you have to keep moving, but there’s a huge tiredness with that.”
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