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Poor end of life care exposed by the pandemic

Covid-19 has had devastating effects on care homes across the UK.  Disproportionate numbers of excess deaths have been recorded amongst care home residents and there are increasing reports of people dying alone.  Discriminatory responses have included transferring older adults from hospitals to care homes, pressure to use do not attempt resuscitation (DNAR) / CPR orders, rationing according to age, and a lack of testing and PPE. This has significant justice and human rights implications, including the right to life, to health, and to non-discrimination.  

Whilst issues of death and dying have undoubtedly been amplified by Covid-19, the need to improve care for people in their final weeks and days has been a priority for some time. Prior to the pandemic, up to 56% of care home residents died within the first year of admission and it is estimated that by 2040, care homes will be the most common place of death in the UK.  

Yet, care home residents often experience poor end of life care as a result of avoidable hospitalisations, unmanaged symptoms, and inadequate communication, interdisciplinary working and advance care planning (ACP). This can be extremely distressing for residents and their relatives and must be urgently addressed.  

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Dignity in life and death

People deserve to be treated with dignity in life and death and this can be promoted through the provision of attentive support that is responsive to resident needs. End of life care should also embody the concept of ‘total pain’ which recognises that pain is more than just physical; it also encompasses mental distress and has social and spiritual dimensions. End of life care must therefore be interdisciplinary in nature and focus on psychosocial and spiritual needs, symptom management, and building relationships and communicating with families.  

Exercising choice and control is also important to residents as they approach end of life. This can be facilitated through high quality personalised ACP, which is consistent with a human rights based approach. The United Nations Convention on the Rights of Persons with Disabilities, for example, promotes the use of advance care planning as a means to support decision-making to enable people to realise their rights, will and preferences on an equal basis with others (Article 12).  For more on human rights for older people, see Donald Macaskill’s blog.

Advance decision-making can be particularly valuable for care home residents, 70 percent of whom are living with dementia. Individuals can set out their wishes on issues such as medical treatment, the location of care, and symptom management. ACP can therefore help to give voice to individuals when they face challenges in making and communicating their decisions. Whilst ACP can help to reduce unnecessary treatment and hospitalisations, evidence shows that this is limited by staff frequently avoiding these important conversations. Staffing issues, however, must be located in the context of a transient social care workforce that has been systematically devalued and underfunded.  

Lessons can be learned from the network of hospices across the UK who have been celebrated for their caring and compassionate approach to end of life care. However, care home residents often have inadequate access to this specialist support. Access issues are also more pronounced for certain groups in the wider community, including people over the age of 85, from a black or minority ethnic background, identify as lesbian, gay, bisexual or transgender, reside in an economically deprived area, or are socially isolated. The fact that groups who are more likely to experience societal oppression are also less likely to get access to hospice support is wrong. We can and must do better.  

Being human: united through vulnerability and interdependence

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This raises wider philosophical questions about fairness and the allocation of care. The pandemic has put into sharp focus the need for a more socially just care system that places the rights and needs of care home residents on an equal basis with others.  

How we treat people at the end of life is symbolic of what is perceived as valuable in society. People approaching end of life are not always treated as full citizens and this can be linked to vulnerability and its position in a society that values economic productivity and independence. Care home residents are often frail and have multiple complex needs and therefore challenge such ideals.  

Disability scholars have played a pivotal role in highlighting oppressive ‘caring’ practices, and the inferiority associated with dependency. However, to require care, especially at the end of life, is not to be ‘other’ or to be in deficit, but to be human and we must value the intrinsic worth of all human life. Indeed, we are all interdependent and require care across the life course, albeit in different degrees and forms. We must therefore challenge discriminatory actions, including disablism and ageism, that flow from negative perceptions of dependency.  

Treating people with dignity and respect, being attentive to their needs and responsive to their views, is therefore not just a marker of good practice, but ought to be done as a matter of fairness and justice. This should be available regardless of people’s backgrounds or characteristics, and is consistent with the values of an ethics of care.