A hospital without loved ones

Stories from patients in hospitals.

Art by Ellie Stephenson.

On the first day of spring, I sit on the front step of Claire York’s house. Claire is next to me, and at first, we chat about her morning. She tells me about her trip  to the beach with her two-year-old daughter, Amelia, who is now sleeping soundly in the front room, grains of sand still coating her sun-soaked skin. A little while later, Amelia waddles out and sits with us as we talk about Claire’s upcoming trip to the hospital.

Claire, a Sydney nurse in her early thirties, is about to give birth to her second child. “You’re lucky you got an interview in,” she jokes.

However, Claire will have to deliver during a state-wide lockdown, with the New South Wales Health system currently under a “red alert.” Visitors to hospitals are barred unless in exceptional circumstances, with patient-visitor contact limited to phone and video calls. All Local Health Districts have a strict no visitor policy, with exemptions available for “women in labour, certain circumstances in the emergency department, special care nursery, paediatrics and palliative care.” Aged care facilities are similarly closed to visitors, except for essential care and end of life circumstances.

For birthing mothers like Claire, only one support person can visit. Claire’s husband, Andrew, will be by her side. “I won’t be able to see my daughter for a number of days, nor will I get the same amount of support [as she did for her first childbirth],” she says. “It’ll be a challenge.”

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Claire’s concerns are by no means isolated. Patients, support persons, and hospital staff across NSW are enduring considerable hardship under lockdown visitation policies.

Telita, a student, was admitted to a local hospital in July 2021. “I couldn’t walk straight, was blind in one eye and had splitting pain in my head.” Though her partner brought her to the emergency department, she had to say goodbye to him at the door, with no way of knowing how long her stay would be.

While she was seen by a “lovely” nurse straight away, Telita waited hours for a doctor who immediately dismissed her pain and symptoms — she adds that a greater conversation is to be had here about chronic pain in women. “I was so uncomfortable, and couldn’t communicate with the doctors or nurses properly. Having another person who understands your condition to advocate for you, when you’re not in the position to do so, is incredibly important.”

A visitor who can advocate for a patient is invaluable. In an article for the Journal of the American Medical Association, internal medicine specialist Elizabeth Cuevas writes about the patient experience of her mother in the United States, who reverted back to her native language of Spanish as a result of severe pain. “With no one at her bedside to advocate for her, her medical team made decisions about her care that implied they did not believe her degree of pain … Rather, they felt she was doing well, improving even, perhaps falsely assuming that she was just an overly dramatic, elderly Hispanic woman who had trouble communicating in general.”

A support person knows the patient best and can contribute to more effective treatment. When loved ones are involved in patient care, lengths of stay are decreased, and improvements ensue in medical treatment and mental health outcomes. When visitors are involved in patient care, benefits abound.

Julian, a 46-year-old doctor, agrees. “It’s been really difficult for patients not to have visitors … When you’re feeling vulnerable and stressed, it’s hard to remember what you need to say, what your GP has advised, and a lot of critical things are going on.” Again, an advocate for a patient can be extremely helpful. “You need someone there who’s on your side,” Julian says. A hospital visit is already a disruption to life, where people are distressed, and Julian laments that for people who already have mental health problems, not being able to have visitors makes life even harder.

For clinical staff, a supportive family member can provide vital assistance. A loved one knows what the patient is normally like, and can articulate their needs to staff. Julian takes this even further. “It actually makes a doctor or nurse take better care of Mum, because they can see her as part of a family like theirs — not just as a patient in a gown.”

Harry Iles-Mann, a health consumer advocate based in Sydney, knows the reality of the patient experience all too well. “Since the beginning of last year, I’ve had two major health events and have spent 25 weeks in hospital … It’s not a particularly fun place to end up,” he says.

Without visitors, a hospital stay can be incredibly isolating. “Going from a normal, sociable life, and entering a hospital where all of that is taken away, is really destabilising,” Harry says. During his most recent admission, Harry was given his own room, completely separated from other patients. Though this extent of isolation prevents transmission of COVID-19, there are inevitably negative outcomes. “There’s less of a desire to get up and be social, and this doesn’t help rehabilitative mobilisation,” Harry says.

Harry emphasises that he is incredibly familiar with all the nursing staff and doctors, facilitating social interaction. However, the situation can be far more isolating for patients who haven’t been in hospital for long, and haven’t developed relationships with staff. In hospitals with particularly well-established departments, prospective patients will travel from long distances. Without any familiar figures on staff, the difficulties of isolated hospital stays are compounded.

Harry knows the benefits of visitation first-hand. He says that for every major operation he’s had since childhood, his mother stayed with him for almost a week. “When I’ve been at my most unwell and unstable, Mum has been there for me … She’s freed up the time that the clinical staff need for more complex situations. My stays have been far longer when I haven’t had visitors.”

Visitation doesn’t have to be prolonged to be effective. While Harry was recovering from septic shock, he found himself in overwhelming pain and discomfort, and brief visits were a welcome reprieve. “Even just a couple of hours a day with Mum and Dad were enough to take my mind away from it,” he says. “Just for a little bit.”

Louise, a Sydney teacher, can relate to the visitor experience. When her partner was recently admitted to the hospital for several weeks, Louise was unable to see her. “I brought her up to the emergency department, and it was thank you, goodbye, from there. She didn’t have her phone, bag, her sleep apnoea machine or even a change of clothes.” The next day, when they moved her partner up to the geriatric ward, Louise brought her belongings to the hospital reception.

However, a week after her partner was admitted, Louise found an inspiring way for them to connect. “We were speaking on the phone, and she told me that she had a fabulous view. I walked up to the rotunda opposite St Vincent’s in Green Park, and started waving. She spotted me, but I couldn’t see her, so she got a sheet of white paper and flapped it in the window. Eventually, I spotted her. We stood there, flapping and waving at each other.”

Louise says that, for her partner, “just seeing someone, seeing me, gave her a bit of hope and motivation to deal with what was happening.” The power of a loved one proved true.

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So, how can we utilise the benefits of visitation while in lockdown?

Coming from a medical perspective, Julian says that allowing visitors at the moment isn’t feasible. “There’s not enough space to socially distance in our departments, we don’t have the time or resources to get every visitor into PPE (personal protective equipment), and the risk of COVID is just too high. We have really vulnerable patients,” he says.

Harry argues that to substitute the help that loved ones provide, hospitals should make use of non-clinical staff. “Ward clerks can move around wards with less time pressure and fewer things to do.” Hospitals should increase the presence of non-clinical workforces, performing actions that don’t require accreditation.

Crucially, we must improve the dynamics of patient care. “COVID presents a unique opportunity to address baseline flaws in the health system,” Harry says. He mentions staffing, a problem that the pandemic has only worsened. Hospital staff simply don’t have the attention and time allocation to do the work that visitors once fulfilled. A mandated nurse to patient ratio is essential, and Harry adds the government must “engage in a dialogue with the nursing and midwife workforce to improve this.” Julian agrees, and mentions the importance of the NSW Nurses and Midwives’ Association’s 1:3 campaign.

Harry raises a challenge. “When we move to a post-COVID state, I am not confident that people who are in marginalised communities, and people with chronic illnesses and disabilities, will be part of the population that moves back to normality.” While we enjoy our elaborate harbourside picnics and a so-called Freedom Day, vulnerable patients will still rely on an overloaded system.

Ultimately, the struggle of hospital stays without visitors should be a catalyst for healthcare reform. We need a path forward, addressing the flaws in our health system, and enacting positive change.

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