Dr Georgia Peters is an advanced trainee currently working in Melbourne. Her commentary discusses the process of palliation during the peak of the Covid-19 epidemic in Melbourne.
“Sorry, what did you say? I can’t hear you very well.”
I reflexively adjust my face-shield and lean closer to the microphone on the hospital-issued tablet computer, on which the teleconference video app is running.
“I said, I’m sorry, but your mum isn’t doing so well today. We are at the limit of the treatment we can provide.”
I can see Caitlin* and her dad on the screen. They take a deep breath and look at each other.
“We know,” they say. “We’ve been expecting this call. Can we come and see her when she goes?”
“I’m very sorry, but cannot allow visitors for patients who still have active COVID-19.”
Caitlin’s voice wavers. “But she’s dying. Surely you can make an exception?”
There’s nothing I can say that will alleviate their pain, but I try anyway. “I can’t imagine how terrible this must be for you… we’ll do everything we can to keep her comfortable.”
“So… we’re supposed to let mum die alone, while we watch on a phone screen?”
We know that patients in the intensive care unit (ICU) are the sickest in the hospital, and that many of them will die. Delivering quality end-of-life care (EOLC) is therefore an essential component of ICU training, and we pride ourselves in being able to provide patients with a good death.
High quality palliative care should provide comfort and closure to the patient and their loved ones at the time of death. The patient needs effective symptom control, attention to spiritual and cultural factors, dignity, emotional wellbeing, and family support (among others) (1, 2). For their loved ones, the most important things are a sense of life-completion, family, and the chance to say goodbye (2, 3).
The social elements of EOLC are incredibly important and honouring them at the time of death undoubtedly helps with healing after loss.
Human connection has been severely affected by the COVID-19 pandemic due to visitor restrictions imposed upon ICUs. The current technological solutions available to us are a poor substitute for in-person contact; it is therefore impossible to provide a satisfactory death as imagined above.
Visitor restrictions seem inhumane from the perspective of patients and their families, and morally distressing for the intensive care team who enforce them. In order to restore patient-centred EOLC, we should revise our guidelines and allow families into ICU to say farewell to their dying relatives.
What were the rules during the pandemic?
Most Australian ICUs have prohibited adult patients with COVID from having visitors during the pandemic. Exemptions are granted only on compassionate grounds for COVID-negative patients in the terminal phase of illness when death is thought to be imminent.
However, when a person with active COVID is dying, they cannot have any visitors.
At best, a limited number of immediate family members in full personal protective equipment (PPE) may be allowed to observe the dying process from outside the glass doors of an isolation room.
More commonly, family watch their loved one’s last moments on a screen via a video conference.
Why is this problematic?
Relatives describe cognitive and emotional overload when they learn that their loved one has been admitted to ICU. During a global pandemic, this response is heightened by inflammatory headlines in the media, and misinformation perpetuated within the community.
It is extraordinarily difficult for the treating team to simultaneously provide adequate information, debunk myths, and reassure stressed families over the phone; holding crucial conversations (goals of care discussions, breaking bad news, transition to EOLC) is even harder.
A large proportion of the challenge is due to the emotional distance technology creates. Telephone and video calls are accompanied by many barriers, ranging from poor connections, low technological literacy, cultural and linguistic diversity (including the complexity of adding interpreters to the call), and loss of non-verbal cues (4); all of this is magnified by the use of PPE and its dehumanising appearance.
In addition to the seemingly distanced communication, families lament the inability to comfort their loved one by physical touch, reading stories, playing music, or simply being present.
Spiritual leaders, previously allowed to perform last rites in person, have also had to transition to an online format. While spoken prayer may offer a degree of comfort regardless of its method of delivery, it still feels unnaturally distanced when performed this way.
Prohibiting face-to-face contact at the end of life affects families deeply and creates problems such as decreased acceptance of terminal illness (potentially leading to prolonged “futile” care), fear that the patient isn’t receiving the same quality of care that the family would provide, and decreased faith in the treating team. At times, the anguish this creates is so great that people cannot control it, and it manifests as abuse of frontline workers (5). Grief and bereavement disorders develop in the longer term, leading to an increased risk of substance misuse, long-term mental illness, and a reduced likelihood of returning to normal life afterwards (6).
What could EOLC visitation look like?
One example of a less restrictive approach is seen in the Netherlands, where ethicists challenged their hospital’s policy on banning visitors for dying COVID-19 patients (7). Instead, they advocated for a return to their standard EOLC practice: they asked families to come to hospital and stay with their relatives (a concept they call ‘rooming-in’).
The benefits of rooming-in are that the patients are less confused or distressed, and have decreased anxiety and loneliness; families find comfort in caring for their loved ones in person, and closure around the time of death.
But this approach isn’t risk-free.
These ethicists identified three key issues to address: risk of infection of the family member, risk of further community spread of the virus by this family member, and the scarcity of PPE.
Yet these weren’t seen as insurmountable barriers.
Firstly, they believed that with adequate information, a relative should be allowed to accept the risk of exposure to COVID-19 that may arise from caring for their loved one (although frail, unvaccinated, or immunocompromised family members were advised against performing this role).
Secondly, visiting relatives were instructed to avoid public transport and crowded environments, and to isolate appropriately for the local recommended quarantine period.
Finally, once PPE supplies were secure, family members were encouraged to wear PPE while in contact with their relative. In the Dutch context, most family members chose to forego wearing masks and gloves altogether, which was permitted.
Although some parts of this approach could be used as a foundation to update the compassionate access guidelines for Victorian hospitals, not all elements described here are possible in the intensive care setting: for example, relatives wouldn’t be able to stay in the ICU bedspace around the clock.
Examining the Ethics
Victorian visitor guidelines were introduced with honourable intent: to reduce the rate of spread of the disease and ‘flatten the curve’ of new cases, thus protect our community from infection, and our healthcare system from failure. While the policy exists at a state-wide level, there is a small degree of flexibility that can be exercised on a case-by-case basis within each ICU, with the responsibility falling to senior clinicians to use it appropriately.
The guidelines were developed according to the ethical principle of distributive justice, as the government wanted to defend scarce resources to ensure that everyone could access the right level of healthcare as they needed it. After witnessing the devastating impact of uncontrolled COVID-19 overseas, it is easy to see why this choice was made.
However, justice occasionally lies in conflict with other pillars of medical ethics, such as beneficence and autonomy (4), and there are likely to be situations in which autonomy and beneficence override it.
Beneficence describes the idea that a particular course of action should be chosen if it results in net good.
Although some would argue that allowing a person to expose themselves to the virus hardly counts as a ‘beneficent’ act, we now have data to support the low rates of transmission from patients (i.e. thousands of negative screening tests performed in asymptomatic workers). This can be attributed to the use of PPE, and the fact that many patients in ICU have controlled airways, and thus generate fewer airborne viral particles.
Furthermore, we now have access to effective vaccines to defend the community. Victoria has now reached a population vaccination rate of >94% (8), which corresponds with a reduced incidence of severe infection requiring hospitalisation or intensive care supports.
Therefore, it is plausible to say that the benefit of providing EOLC is greater than the risk of infection.
Autonomy refers to an individual’s right to make decisions based on the premise that they can do so in a rational way.
The autonomy argument is at risk of becoming a slippery slope: where should the line be drawn between justice and autonomy? If individuals can choose to accept the risk of COVID-19 exposure in the context of visiting their dying loved one in hospital, why aren’t they permitted to determine their own risk of exposure in other circumstances, such as refusing to wear a mask in public or ignoring visitor restrictions in their home?
Part of the difference here is that EOLC is a morally significant situation in which the lowered risk of COVID-19 exposure is outweighed by the benefits for the patient and the family. This is a sufficiently different situation to a person refusing to wear a mask in the community simply because they don’t like it; in this situation, “doesn’t like wearing a mask” is balanced against “uncontrolled spread of a pandemic illness”, which poses markedly higher risk of harm than the former scenario.
Australia is in the privileged position of being able to decide whether we can provide this sort of ‘good death’ for our COVID patients; in many overseas institutions, they die alone in tents and carparks that have been converted to temporary wards in the wake of impossibly high infection numbers.
While we must indeed be grateful that we haven’t yet had this experience, it doesn’t mean that we can’t optimise our current approach in the meantime. I believe visitor policies should be revised either at a unit, hospital, or state government level, because EOLC is a morally distinct situation that should allow flexibility in otherwise (necessarily) strict visitor rules.
The following quote from Bunnik et. al in their paper summarises the situation nicely:
“Video is not a substitute for real human contact, [and] watching someone die on a device is simply cruel and a cause of insurmountable grief. In all probability, we have only one life to live, and one death to die. To be able to die with dignity is one of the most important moral ends that we can strive towards. Family members should not be withheld from making their own calls about the health risks associated with being present to hold their loved ones and support them in dying.” (7)
1. Moore B. Dying during Covid‐19. Hastings Cent Rep. 2020;50(3):13-5.
2. Meier EA, Gallegos JV, Thomas LPM, Depp CA, Irwin SA, Jeste DV. Defining a Good Death (Successful Dying): Literature Review and a Call for Research and Public Dialogue. Am J Geriatr Psychiatry. 2016;24(4):261-71.
3. Radbruch L, Knaul FM, de Lima L, de Joncheere C, Bhadelia A. The key role of palliative care in response to the COVID-19 tsunami of suffering. Lancet. 2020;395(10235):1467-9.
4. Ben-Jacob TK, Peterson L-KN. Drastic changes in the practice of end-of-life care during the COVID-19 pandemic. Journal of Critical Care. 2021.
5. Crabtree R. Mildura nurse and CEO call for compassion as abuse and COVID restrictions take their toll. ABC Mildura-Swan Hill. 2021 13/12/21.
6. Lobb EA, Kristjanson LJ, Aoun SM, Monterosso L, Halkett GKB, Davies A. Predictors of Complicated Grief: A Systematic Review of Empirical Studies. Death Studies. 2010;34(8):673-98.
7. Bunnik EM, Siddiqui S, van Bruchem-Visser RL. Ethics of rooming-in with COVID-19 patients: Mitigating loneliness at the end of life. Journal of Critical Care. 2021.
8. Government V. COVID-19 vaccine rates in Victoria 2022 [updated 9th Jan 2022. Available from: https://www.coronavirus.vic.gov.au/.