Achieving a ‘good death’: supporting health professionals to meet this challenge

Bridget Marshall

Death is a certainty and more often than not we try to avoid thinking about it. However if we do think of our own death, most of us hope it will be pain free, without suffering, relatively quick, and not create an undue burden on those we love . The process of dying might also allow enough time to complete certain tasks or to be with certain people. Most of us would like to have achieved the things in life that are important to us and go towards our death with a sense of peace.

There is a growing body of research that attempts to understand the social aspects of death and dying that makes it clear that what people want and need at the end of life can vary considerably. Many of these studies have focused on the concept of a 'good death', which involves taking into account the differing priorities based on the dying person's beliefs, cultural background and individual social circumstances and the circumstances of their disease. Studies asking patients and their families what constitutes a 'good death' reported factors that centered around aspects of self-control and respect as an individual, completion of a life well lived, not being a burden on others, dying in the preferred place, and spiritual and physical comfort (Pinson et al, 2011; Miyashita et al, 2008,) In contrast, studies that centered on health practitioner perspectives found that a 'good death' was more focused on the importance of symptom control, the person being aware they were dying, and family being aware and prepared for the person's impending death (Griggs, 2010).

Therefore, while caring for and supporting those who are dying and their family/whānau can be an enormously rewarding aspect of work for health care professionals, it can also be complex and at times very challenging.

Health professionals, especially those working and caring for the dying, constantly strive to meet the needs and wishes of the patient and their family/whānau. They do this within the constraints of knowledge and evidence (scientific and sociological) and the resources available to them. There is willingness and urgency for us as health professionals to 'get it right' and support the kind of death that could be considered to be a 'good death' for the person we are caring for.

There have been many advances in palliative medicine since the first modern Hospice service was established in the United Kingdom in the 1960s. This includes better understanding of symptom management, use of analgesics in complex pain syndromes, new medications and delivery methods, and acknowledgement of individual choices and family's needs and expectations. Recognition of the need to care for the whole person is seen as one of the fundamental principles of palliative and end of life care. This approach includes the need to provide care that meets not only the physical needs of the person but also their spiritual, cultural, social and emotional needs.

Hospices are recognised as providing the 'gold standard' of care for the dying and their family/whānau. There are 32 Hospices listed on the Hospice NZ website, and these facilities provide a mix of in-patient and community care for the dying person within the region they serve. However only 6% of those who die in New Zealand die in a Hospice, with the majority of New Zealanders dying in hospital (34%), or for those over 65 dying in aged residential care (31%) (PCC, 2011).Therefore, there is an imperative to transfer that best standard of care from Hospices to these other places of care.

One of the more recent tools aimed at supporting the transfer of best practice model of palliative care to non-Hospice settings has been end of life care pathways. Care pathways have been used in health since the 1980s as a way of aiding complex decision making and organising care processes for a specific group of patients over a specified period of time. The end of life pathway available in New Zealand, and endorsed by the Ministry of Health, is the Liverpool Care Pathway for the dying patient (LCP).

As suggested by its name, the LCP was developed in Liverpool, England in the mid-1990s. It was a joint initiative of the Royal Liverpool and Broadgreen University Hospital National Health System Trust and the Marie Curie Palliative Care Institute in Liverpool. In the UK, the LCP is recognised as a model of best practice and is recommended by their Health Ministry in their End of Life Care Strategy (DH, 2008). The LCP is now used in 21 countries around the globe and has been translated into six languages.

Care pathways not only document the treatment that has been given but also prompt clinicians in appropriate goals of care. It is not a prescriptive tool, and as such will not determine what the health professionals prescribe and when. Each instance of the care pathway is specific to the individual patient and is designed to capture the dynamic, changing nature of the person's journey. Individual patient needs are highlighted and thus can be addressed and evaluated individually. But at the same time, by having standardised goals of care, the same level of care can be transferred to all care settings including acute hospitals, aged care facilities, people's own homes, and hospices.

The LCP is designed to be used in the last days or hours of life when all reversible causes of a patient's deteriorating condition have been assessed and managed appropriately. If a person's condition improves (e.g. a positive change in conscious level, functional ability, mobility, or the ability to perform self-care) the carers will stop using the New Zealand LCP to guide care, and reflecting the person's condition, commence an appropriate plan of care.

The recognition and diagnosis of dying is always complex, irrespective of a person's medical diagnosis or history. A multidisciplinary team decision, involving the doctor, nurse, and other health professionals is important in making this clinical judgement. Communication with the patient's family/whānau is pivotal and all decisions leading to changes in care should always be communicated to both the dying person (if possible and appropriate) and their family/whānau.

The LCP is family centred, focusing not only on the physical aspects of care, but also on communication, and the spiritual and cultural care of the person and their family/whānau. The New Zealand LCP document has been altered to include specific goals that New Zealand deem essential when caring for the dying, including the addition of goals relating to cultural care. Currently, there is a Health Research Council of New Zealand funded research project underway entitled 'Culturally Appropriate End of Life Care for Māori', with the New Zealand LCP document being used as a framework for the research.

The New Zealand LCP is now being used in over 300 sites across hospices, hospitals, in people's homes and aged care settings within New Zealand. The LCP supports but does not replace clinical judgement and is not a treatment in itself. The use of the New Zealand LCP must be underpinned by a robust on-going education programme and forms part of the continuous quality improvement programme of an organisation. This ensures that all health professionals who are caring for the dying are constantly learning and reflecting on best practice end of life care.

The use of tools such as the LCP has been consistently demonstrated to benefit the practice of health care professions in caring for those who are dying. In research conducted in New Zealand acute care and aged care settings health professionals were asked whether they felt that their care had changed since using the LCP. They responded that their communication both with families and other health professionals had improved, and in addition, there were also marked improvements in teamwork, documentation, and clinical practice. It was felt that the health professionals using the LCP were better able to address patient symptoms and their confidence in how to offer high quality palliative care had increased, both in regard to the patient, and to the patient's family/whānau. (Clark et al, 2011, Clark et al, 2012)

Usually when a person dies they are not in isolation. In addition to family members, many health professionals are often involved in the process, such as medical staff, nurses, care assistants, chaplains, therapists, pharmacists, social workers and carers. The LCP document provides the scaffold for all of these disciplines to meet and coordinate around the care of the dying person.

Whatever people perceive to be a 'good death', health professionals charged with caring for those nearing the end of their life and their companions have a responsibility to support them. For the person dying a 'good death' will revolve around being pain free, treated with respect and being at peace. For the family/whānau, a good death will involve comfort of the dying person, and having access to that person in the last hours. For health professionals, a 'good death' will involve a balance of the needs of the dying person with access to medication and other resources, and the needs (or limitations) of the organisation or location where the dying person is being cared for. Health professionals need to appropriately utilise the resources available to them: be it palliative care expertise, medications, and clinical pathways. Clinical tools such as the LCP support health professionals facing the challenges of helping people to achieve a 'good death' regardless of what the person is dying from, or where they are dying.

Bridget Marshall RN MN is the Lead for the National LCP Office for NZ.

The Ministry of Health funded National LCP Office was established in 2008 to promote and coordinate the sustainable implementation of the LCP across all District Health Boards in New Zealand.

References


Clark, J, Sheward, K., Marshall, B., Allan, S. (2011) Staff perceptions of end-of-life care following implementation of the Liverpool Care Pathway for the dying patient in acute care setting: a New Zealand perspective. Journal of Palliative Medicine. 15(4); 468-473.

Clarke, J., Marshall, B., Sheward, K., Allan, S. (2012) Staff perceptions of the impact of the Liverpool Care Pathway in aged residential care in New Zealand. International Journal of Palliative Nursing. 18(4), 171-178.

Department of Health (2008) End of Life Care Strategy available on http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086277

Griggs, C. (2010) Community nurses' perceptions of a good death: a qualitative exploratory study. International Journal of Palliative Nursing. 16(3), 139-148)

Miyashita, M., Morita, T., Sato, K., Hirai, K., Shima, Y., Uchitomi, Y. (2208) Good death inventory: a measure fro evaluating good death from the bereaved family member's perspective. Journal of Pain & Symptom Management, 35(5): 486-98.

Palliative Care Council (2011) National Health Needs Assessment for Palliative Care, Phase 1 Report: Assessment of Palliative Care Need Available from: http://www.palliativecarecouncil.govt.nz/pub/national-health-needs-assessment-palliative-care

Pinzon, E., Carlos, L., Matthias, C., Isabel, K., Stephan, L., Sabine, F., Martin, W.(2011) Preference for place of death in Germany. Journal of Palliative Medicine. 14(10); 1097-103.