Good End of Life Care relies on the following principles: open and honest communication between the health carers, the patient and their families so that appropriate choices are made about treatment, care and where it is delivered; effective symptom management and pain control; psychological and spiritual support for the patient and their family.
Whilst it is difficult to come to terms with the fact that there is no further treatment for an illness, people generally appreciate that they have choices which they feel give them some dignity and control. Many choose to die at home and palliative care teams do their best to expedite this.
Unfortunately, with COVID-19, patients can deteriorate very rapidly. There is little time for significant conversations; speed is of the essence, patients quickly find themselves in intensive care units, hooked up to ventilators surrounded by health care staff who are gowned and masked. With frightening speed, they find themselves isolated, unable to speak or even reach out and touch those they love.
Symptom management is the main focus with little time for psychological and spiritual care. There is no choice, cross infection must be controlled. Families are kept outside, there is no time or space for the kind gestures that we rely on to soften the blow to come. The pace at which everything happens, the sheer volume of people requiring care results in stress on all sides.
Until recently the focus of attention, and resourcing, has been on acute services, and community services have struggled to meet the need that is left to them to manage.
There is an ageing population that still requires end of life care in the community. Care teams have usually managed their workload knowing that family members contribute, monitor and care for these elderly people. Such are the demographics that many of those relatives caring for the elderly are now themselves identified as ‘at risk’, and told to self-isolate which adds to the pressures on community health care professionals who try to cover the shortfall. When people are used to having control over themselves and the care of others, having this removed can result in anger and frustration.
The essence of ‘good’ end of life care comes down to communication. This is compounded when conducted in an atmosphere of fear and stress. Giving voice to this may help defuse tension. When resources are scarce, it is easy to forget the power of communication to ameliorate the situation.
COVID-19 has led us into unchartered territory. But past crises have resulted in medical advances – e.g. the origins of chemotherapy in accidental exposure to mustard gas in World War 2; treatment of burns following the Falkland War. COVID-19 will teach us more about End of Life Care and help us to manage it better in the future.
Laureen Hemming, certified grief recovery method specialist