Care co-ordinator nurse Claire Glenn believes there is a hidden and terrible impact of the pandemic that could be leading some of her patients to die sooner than they should.
Claire’s problem is not a lack of PPE or ventilators. As in the spring, the services she helps her terminally ill patients access are all available. But fear of infection is stopping the most vulnerable from accessing life-prolonging care, effectively rendering it inaccessible just when it could deliver most benefit.
Normally, Claire explains, she visits people in their own home where it’s easier to have the difficult conversations about “what’s important to them, where they want to have their care, where they want to die.”
She gathers vital information she relies on to do her job well – non-verbal cues picked up face-to-face and other details gleaned from a patient’s living arrangements.
Because of the Coronavirus, all that has changed. “Now, I’m working from the kitchen table and all of my consultations are over the telephone. I’m not doing face-to-face visits with any patients,” explains Claire.
She continues, “People’s homes are so individual. You’ve got to think about how practically it’s going to work. On the telephone, I have to ask all those questions about the environment but also it takes longer to build up that rapport. It wasn’t easy initially to have those conversations over the telephone.”
The most complicated challenge has been working with her most vulnerable ‘shielding’ patients who are extremely anxious about letting anyone into their home, even to deliver care.
She talks about a woman who received a terminal cancer diagnosis just before the first lockdown. “There were no curative options for her, and she knew that, but there would have been some palliative treatments to tackle and manage symptoms.”
After Chemotherapy, her patient returned home where she lived alone, and was told to shield. She avoided all human contact.
“I think if we hadn’t had the COVID situation, she would have been offered a lot more symptom management options,” says Claire.
Claire is quiet a moment, then adds, “The fact that she didn’t have any intervention over 6 months. She deteriorated so quickly that she died far too soon.”
Claire believes fear of allowing people into her house led the patient to go into a care home. “I felt ethically in a very difficult position because I felt I needed to do more for her, but she wouldn’t allow me to because she was so frightened of the physical contact. With the right level of support, she could’ve ended her days in her own surroundings,” she says.
Tragically, this is not an isolated case. Claire’s had four or five very similar scenarios with patients who are, she feels, reaching the end of their lives quicker than they would have done.
Claire and her fellow healthcare workers have needed to adapt quickly to the changed circumstances.
“Even before lockdown, you would never complete an advanced care plan and discussion in one visit,” she explains, “I’ve adapted to the fact that if it takes half a dozen phone calls, and we focus on something different at each call.”
Medical colleagues are supporting each other, but Claire can’t deny the feelings of isolation she has experienced. “It is autonomous, and I’m used to working like that and I like it. However, I felt I’d been left to carry a really big burden,” she says, adding, “you’ve nobody to bounce your ideas off.”
She’s very grateful to a GP colleague who made himself available at the end of a phoneline. “Just being able to speak to a colleague that completely got the difficulties that I was having and the dilemmas I was in, that was really useful. It was a life-saver, really,” says Claire.
People have had to make decisions about care for family members in difficult and distressing circumstances this year.
Claire would advise anyone wanting to be better prepared to have an honest conversation. “Find out what’s important to your loved one. Find out what they want. Find out what they don’t want, more importantly,” she says.
And don’t leave it too late.
“Making decisions about somebody’s deteriorating health is something that needs time. It’s not something we want to do very quickly in a crisis,” she adds.
Although it’s been tough, Claire does think there will be positive lessons learned from this year. For many consultations, the move away from face-to-face is likely to be permanent. “I think what’s amazed everybody is there is so much that can be done and safely. It will have a big part of healthcare in the future. It’s changed the landscape completely,” she says.
But she’s quick to add that there will always be situations where a healthcare professional just can’t be effective without seeing the patient in person. “It’s about getting the balance right,” she says.
For now, in the thick of the second wave, Claire has little time to stop and think about what’s happened. For just a few seconds, she rests back on her sofa and reflects, weariness apparent, “It’s just like we’re in this whirlwind,” she sighs, “We’re caught up in this and we’re getting on with it but at some point, there will be a time where you think I don’t know quite what we’ve been through and how we got here”.