The start of a new year is a reminder of the challenges and successes of palliative caring in the previous one. While the NHS has had its fair share of challenges in 2019, from staff shortages to patients not being seen within the prescribed waiting times, when care was given, it was still the best possible. This reflects the dedication and commitment of health professionals providing a positive patient experience. Palliative care in the community seemed to have some successes, with some ambulance students I teach assuring me that they do not always rush patients to hospital each time they are called out to their homes. Thus, different services, such as ambulances, GPs and pharmacies, now provide community-based care, and they seem to appreciate the fundamentals of palliative care. Community nurses' support for patients within the home helps families stay together with the dying patient, and, as a result, ensures that the dying process occurs with dignity and respect—all of which helps with the process of bereavement.
Challenges of dying
Caring for dying patients presents a range of challenges, from symptom control or management and effective communication to managing the patient's psychological concerns, which are, in themselves, difficult to understand. Psychological concerns are expressed through behaviours and verbalisation, and loneliness remains the most taxing issue for both patients and health professionals. The social dimension of dying tends to top the list in the range of challenges experienced by the dying. For example, how and where a patient dies does not only consider the patient's wishes, but is the sum of their social relations. Patients may be compelled to leave a will to share or distribute their estate, while, by the same token, remaining part of the living. This creates a paradox: although the dead may no longer be physically with their family and loved ones, they are, in fact, still present.
Death and its aftermath can challenge health professionals on a number of levels. Many clinicians find it difficult to communicate with a dying patient, as well as the bereaved. How is one to answer some of the difficult questions after a death (e.g. Were they in pain?)? In some cases where staff shortages are common, the question ‘were they alone when they died?’ can be uncomfortable for health professionals to answer.
What next for 2020?
Having learnt from 2019, it is time to reflect on what the nursing community did well and build on that success in 2020, improving on the perceived challenges. First, it needs to be recognised that our way of life as a society focuses on individual lives, prosperity and individual achievements, and, while this is fine for the individual, it may not always translate to a collective approach to caring during ill health and death, as it often encountered in palliative care. Although individuals die, families and communities are often affected for a prolonged period (Nyatanga, 2019). Therefore, it could be argued that, in 2020, palliative care needs to be made a truly collective and community-based approach. As patients are being cared for and dying in the community, health professionals can raise awareness by working closely with the public to explain the principles of palliative care and what makes quality of life and dignified death paramount. In this way, health professionals become catalysts to opening up discussions around death and dying (Nyatanga, 2019), whereby the taboo that still surrounds death can be gradually removed. When the public start talking openly about death and dying, it might make it much easier for health professionals to then discuss the more sensitive and serious aspects of caring for the dying.
Integrated care benefits both patients and health professionals, in that there is no duplication, and patients do not end up with multiple (unnecessary) visits, which often leave them exhausted. Community pharmacist services are making a positive impact by offering support and advice with medication, as well as nutrition, and this service should be enhanced in 2020 by ensuring that each GP surgery is linked to a community pharmacist. Indeed, the introduction of such services may change the dynamics among health professionals, but keeping the patient at the centre of care may inspire them to work effectively together. Patients will benefit from clear explanations of such services and where and how they overlap with others, so that trust is maintained.
In 2020, health services should all work together to offer support to patients and their families, so that, even in death, positive memories can be created.