What does good care look like in a pandemic? A Statement of Principles for Residential Care Settings

By Michael Dunn, Ann Gallagher and Nipa Chauhan

 

With each day that passes, the COVID-19 pandemic is changing many of the things that we have taken for granted in our daily lives. Nowhere is this more evident than in residential settings – care homes and nursing homes – responsible for supporting, and providing care to older people, people living with intellectual disabilities or chronic illnesses, and other groups.

Attention has turned belatedly to the impact of COVID-19 in social care settings. Only in the last few weeks have politicians acknowledged the profound and catastrophic impact that COVID-19 is having on people living and working in residential care. Only now are have they begun to take the necessary steps to respond to the challenges that those providing and receiving care are facing.

The UK government and many professional organisations have produced new practical guidance to address the impact of the virus in this context. In the UK, this has included guidance from the Department of Health and Social Care, as well as from the Care Quality Commission. Practical management strategies have been put forward by the British Geriatrics Society, and Skills for Care has issued important training materials and practical support on infection management.

In our view, it is crucial that the ethical principles that underpin and motivate these strategic approaches are considered directly in the day-to-day practice of residential care work. Such principles will not address the strategic failures evident in the under-provision of equipment or support. Nor will they deal with the systemic problems that are resulting from the problematic separation of health and social care service responses in the UK at this time. However, by reflecting on and discussing these principles, we think that staff members can be empowered to think constructively about how they can do the right thing for their residents and colleagues. We believe the following ethical principles should undergird residential care practice in the current pandemic: harm reduction; non-abandonment; caring fairly; and maintaining agency and dignity.

 

  1. Reducing the Risk of Harm

An ethical vision of good care usually means focusing on doing good for residents: being supported in ways that enable residents to pursue a life that they value. During a pandemic, this focus needs to be rebalanced away from ‘doing good’ to ‘preventing harm’. It now ought to be a priority to take the steps necessary to safeguard residents from the risks that COVID-19 poses to them.

This may be challenging for care staff who, rightly, aim to promote residents’ quality of life, rather than simply preventing the worst outcomes. At normal times, this is entirely appropriate. But these are not normal times. By orientating care practices towards reducing the risk of harm, the most serious consequences of the virus – death and serious illness – can be minimised as far as is possible.

In practical terms, this means attending to infection control measures such as handwashing and using appropriate personal protective equipment (PPE) where available to reduce physical harm to residents and care staff. Physically isolating residents with COVID-19 symptoms from other residents, regardless of whether the infection is confirmed through testing, will also be justifiable. Harm reduction also includes ensuring that appropriate and necessary referrals to primary and secondary care are made to meet residents’ health needs, whether related to COVID-19 or not.

 

  1. Non-abandonment

The absence of meaningful caring relationships can result in care-recipients experiencing abandonment and feeling sad and alone. A directive from care ethics theory is not to turn away from someone in need who is dependent on you. Care-recipients need to be reassured that they are not alone and that, regardless of treatment decisions, care will not be withdrawn. The principle of non-abandonment guides caregivers to reflect on ways to demonstrate compassionate care, including when wearing PPE, so that residents can experience a continuation of the valuable caring relationships in place before the pandemic. It is important also that caregivers are not abandoned by employers and that, in accord with the value of reciprocity, all steps are taken to ensure they have access to the PPE they need to remain well and capable of delivering good care to residents.

Non-abandonment also requires staff to work to minimise the negative consequences that can arise through harm prevention strategies, such as social isolation and emotional distress.

Families who choose to discharge their loved ones from residential care should also be treated with sensitivity. Creative strategies should be used to minimise confusion among the residents who may not understand either why they are remaining in the home, or why their friend is being discharged. Perhaps the most devastating result of an effort to minimise harm is one where family members are unable to be present at the end of a resident’s life.

Creative strategies to enable residents to feel cared for, need to be developed and shared across the sector, for example, using technology to connect with family and friends. Caregivers need to also be mindful that PPE may prove distressing and confusing for some residents, especially those with cognitive impairments. Compassionate communication will involve frequent introductions by caregivers, reassurances provided, and warm, personalised interactions with residents.

It is critically important to identify residents approaching the end of life and ensure that caregivers are both confident and competent to deliver end of life care. Helpful resources are available to assist staff (https://apmonline.org/wp-content/uploads/2020/03/COVID-19-and-Palliative-End-of-Life-and-Bereavement-Care-22-March-2020.pdf). As family members cannot be present in person, the presence of staff, combined with the use of technology to contact friends and family, are likely to make a significant difference.

 

  1. Caring fairly

Residential care homes are communal living environments. What happens in the home as part of providing care to one person resonates with all those living and working in that setting. The steps taken to minimise the risks associated with the virus will have even greater ripple effects in the home in terms of the allocation of limited resources. This is particularly challenging when staff and material resources are already limited, as is frequently the case in social care settings.

Strategies adopted to minimise the harm that the virus is causing to one resident will impact on the lives of all residents and, perhaps uniquely in the context of a pandemic, on caregivers and their families outside the care setting as well. The fair distribution of risks within the home as a whole will likely justify cohorting residents with and without the virus into separate physical spaces in the home. Those residents who are self-isolating continue to require care, and any reduced interaction between staff and resident needs to ensure that basic needs are met, with implications for how PPE is fairly distributed both to staff members and residents.

The allocation of staff to particular roles, and the scheduling of shift patterns, also needs to be undertaken fairly. We think that a volunteering process is likely to be the fairest way to allocate staff to high-risk caregiving activities, with staff being appropriately acknowledged for the risks they are taking. The transmission risks associated with staff members living outside the home and travelling to work also need to be handled in an equitable way. An arbitrary requirement for staff to move into the home, isolating themselves away from their families, is likely to be unjustified, despite the potential reduction in the risk of transmitting the virus. This is because such a practice is likely to be exploitative of a workforce that is generally underpaid, international in character, and founded on weak contractual protections.

The practical implications of fairness in residential care mean that ethical leadership is critically important if careful decisions are made in ways that are attentive to staff morale. It is acknowledged that predicting the consequences of activities, such as testing, is challenging. Decision-making needs to be open, transparent and independent of commercial interests.

 

  1. Maintaining agency and dignity

Focusing on preventing the worst outcomes for residents at the time of a pandemic does not sit well with an overarching requirement for caregivers to think broadly and imaginatively about what is owed to individual residents. Indeed, there is a real danger that the public health rationales for minimising harms could undermine person-centred care at this time. This may be troubling for staff who are trained to tailor their work to the specific needs, interests, and values of the different residents they care for.

It is important that the unique value and dignity of the person being supported remains at the forefront of all care activities. Individual residents will often retain the ability to agree, or not, to interventions that are being proposed, with important legal implications. Whilst residents might be denied the ability to retain full control over all decisions, on the grounds of the other principles, they must be engaged with respectfully and sensitively in decision-making processes. Most importantly, no decisions should be made arbitrarily for all residents as a single, homogenous group, especially those relating to end of life care. The rationale for measures to minimise the spread of infection and keep people safe also need to be explained carefully.

 

In conclusion, a resolute commitment to compassionate and dignified engagement between staff, residents and family members of both groups is particularly important at this time. Discussing creative responses to the challenging nature of depersonalising and isolating interventions so that relational bonds are maintained and promoted underpin any ethical account of caregiving in a residential setting during a pandemic.

Interpersonal contacts and relationships need to be maintained as this is possible, including through the use of innovative technological solutions. Careful thought needs to be given to how a person can be cared for with serious illness in the home when necessary. Attending to the ethical aspects of proposed interventions will be an important component of ensuring that both staff and residents are supported in the right way.

 

Authors and Affiliations

Michael Dunn, The Ethox Centre and Wellcome Centre for Ethics and Humanities, University of Oxford. Twitter: @ethical_mikey

Ann Gallagher, International Care Ethics Observatory and School of Health Sciences, University of Surrey.

Nipa Chauhan, University of Toronto. Twitter: @NipaChauhan

Acknowledgements

We would like to thank all members of the International Care Ethics Observatory for their contributions to the issues discussed in this blog post. In particular, we would like to acknowledge Ayesha Ahmed, Sally Hope, Jane Leng, Monteverde Settimio, Joan McCarthy, Michael Daley, Anna Cox, Christopher Herbert, David Perry and Olivia Luijnenburg for their helpful comments on the draft.

Competing interests: None

 

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