Helping people to live with dignity until they die

---

Many people spend their lives dreading ill-health and death. As the healthcare system evolves, it is important to prioritise dignity in healthcare at all times, particularly in end-of-life care.

---

The ACN (Australian College of Nursing) is committed to promoting the welfare of nurses and patients in the Australian health care system. Maintaining the dignity of patients is not only beneficial to those patients but also to the nurses and families who care for them. ACN actively advocates for the increased understanding and prioritisation of end-oflife care, in all health settings.
ACN has made submissions to a number of draft reports and consultation papers regarding palliative care in the Australian healthcare system; strongly advocating for the improvement of end-of-life care and an increase in patient-centred focus. To ensure safe, high quality end-of-life care, the delivery of care must be patient and family centred and provided by a well-supported interdisciplinary team.
It is important to recognise that the effectiveness of the essential elements of care within hospital and community-based systems are highly dependent on the role and presence of nurses. Quality nursing, especially during end-of-life care, can profoundly impact a person’s quality of life, comfort and dignity and can have a long-term impact on their families and carers.
Systems to support high quality care must include nursing services with the capability and capacity to effectively deliver patient-centred care. Nurses, and other health care professionals, need to be responsive to the often changing and unexpected needs of patients; furthermore, healthcare professionals need to listen to patients and be receptive to the message they are sending. Care plans should be developed in consultation with the patient and their families and carers, and referred to regularly to make sure the patient’s wishes are being adhered to.
As a passenger in a system you have limited control of, it can often be said that dignity is usually the first casualty. The Australian healthcare system must begin to work towards a system which places the patient and their dignity first. When encountering a patient suffering from a fatal illness, their comfort and self-worth should be a priority.
High quality care places an emphasis on each individual and their unique care needs. However, maintaining the dignity of patients goes further than responding to their physical care needs. Care providers must be able to see the people they provide care to as a person rather than the illness that they have.
“The ethical essence of nursing is the provision of care in response to the vulnerability of a human being in order to maintain, protect and promote his or her dignity as much as possible” (Gastman 2013). While the preservation of patient dignity is an ethical imperative for nurses, care provision and caring about patients are not always synonymous. Chochinov (2013) explains that whilst caring implies the conveying of fundamental qualities of kindness, compassion and respect to patients; all too often patients experience healthcare differently, with a trumping of personhood by patient-hood. In this he refers to the ‘consequences of a medical system organised around care, rather than caring’ and that despite technical competence, caring is often lacking or subordinated. Within this system, it can be difficult for nurses to reconcile this distinction between the provision of care, and caring. Nonetheless, it is clear that technical competence alone is not sufficient and emotional intelligence must be embodied in nursing care.
In their review of the literature, Lin et al. (2012) found that, from the combined nurse and patient perspectives, dignity in care within hospital settings was influenced by a number of factors. These included the physical environment, staff attitude and behaviour, organisational culture, and patient independence. Consideration of these factors is important if nurses, as clinicians and policy makers, are to truly promote dignity in care.
The need for patient dignity is especially important as people approach their end-of-life. In the hospice and palliative care literature, this has been addressed by “dignity-conserving end-of-life care” (Chochinov et al., 2009). In their study, Chochinov and his colleagues mapped “the landscape of distress” experienced by patients with life-limiting illness. The Patient Dignity Inventory (PDI) was developed as a novel way to detect and measure levels of dignity-related distress in palliative care patients (Chochinov et al., 2008). Using the PDI, they identified various factors contributing to end-of-life distress. Prominent amongst these was existential distress. While this may come as no surprise to most nurses providing end-of-life care, it is worth considering the extent to which nurses are trained or prepared to effectively and compassionately deal with these stressors in a therapeutic, rather than avoidant manner. All too often, we may feel uncomfortable talking about death and dying (either our patients’ or our own), and what purpose or meaning this might hold for an individual. Another important consideration is identifying the presence and cause of distress in different patients. Clinical tools, such as the PDI, can serve to support clinicians in providing dignity-conserving end-of-life care.
Another tool that can assist patients deal with terminal illnesses is ‘dignity therapy’. Dignity therapy is a course of psychotherapy that focuses on helping patients with terminal illnesses remember what is most meaningful to them and document their legacy.
Dignity therapy involves asking questions about life and work history and assisting patients to define and refine their legacy and decide what they want to pass down to their family and generations. This therapy encourages patients to say things to loved ones that may be able to achieve closure. Dignity therapy can help relieve sadness and depression in terminally ill patients.
Palliative care practitioners are able to respond adequately to the pain and physical distress experienced by their patients, but require more training to provide an adequate amount of emotional comfort to the patient and their families during the trying times.
Educating nurses in compassion and understanding of the hardship being faced by patients is imperative to enable nurses to treat patients with the care they require. Seeing the patient’s issues through their eyes instead of the eyes of a care provider assists the nurse to see the patient as a person rather than a case, and allows the patient to have increased autonomy when it comes to choosing their treatments.
The introduction of support for clinicians’ development of end-of-life care skills is an essential element of safe and high quality end-of-life care. It is important for health professionals to develop the communications skills required to talk to dying patients and their families. Nurses need to be confident in the care and comfort they provide and be able to deal with a wide range of responses to care by patients, their families and other carers.
Nurse leaders are required to assist in reshaping the culture of comfort and dignity in the healthcare system. By encouraging formal education that fosters a culture of caring in health professionals and by role modelling compassionate care, nurse leaders are able to ensure that patients are being provided with the respect they deserve. Senior staff are needed to support the right culture by role-modelling the delivery of physical and psychosocial care to end-of-life patients and their families. Role-modelling reinforces the importance of holistic care in a credible way. As care of the dying is a core skill in nursing, nurse leaders are considered crucial to the practical implementation of holistic end-of-life care.
It is important to recognise the commitment it takes from healthcare professionals in the acute, aged care, community and palliative settings to end-of-life patients, to ensure the patient is comfortable, respected and shown compassion. The combination of education and training, patient-centred care plans, dignity therapy and compassion will allow Australia to have a health care system where people can pass comfortably and at peace with the world. It is essential that health professionals understand that physical comfort in palliative care is not all that matters.
Personal Reflection
Jason Mills, registered nurse and PhD candidate, has extensive experience both working in palliative care and researching this specialised area of practice. Jason shares his experiences.
If there is one thing that I have learnt through nursing, it is that dying is part of living; and healing is possible even when cure is not. In all of our biomedical clinical focus to navigate a shift from curative to palliative care—where death becomes the tacit focus—we might sometimes forget that the ‘dying’ are still, indeed, living. It is imperative that within our clinical practice we appreciate the primacy of preserving dignity and respect for our patients’ human experience of living with dying.
The late Dame Cicely Saunders, an internationally recognised pioneer of modern palliative care once said: “You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”
To me, this encapsulates eloquently the essence of prioritising dignity in care for the dying. Attention to quality of life is paramount. This should encompass care for psychosocial and spiritual needs as much as it should include clinical assessment for management of physical symptoms.
However, the therapeutic relationship between nurse and patient does not conclude with the last breath. Even after death, respect and dignity are essential. Most commonly it is nurses (often with family members) who provide after-death care for a patient who has died. This involves the washing and preparation of the body to leave the clinical setting. From my experience, this ancient practice represents a profound opportunity for nurses to provide a final act of respectful and dignified care. When performed compassionately and skillfully, it can also afford family members a cathartic window towards healing in their bereavement.
ACN would like to acknowledge and thank Jason Mills for his assistance with this article.

---

References
1. Chochinov, H. M. 2013, ‘Dignity in Care: Time to Take Action’, Journal of Pain and Symptom Management, vol. 46, no. 5, pp. 756-759, doi: http://dx.doi.org/10.1016/j. jpainsymman.2013.08.004
2. Chochinov, H. M., Hassard, T., McClement, S., Hack, T., Kristjanson, L. J., Harlos, M., . . . Murray, A. 2008, ‘The Patient Dignity Inventory: A Novel Way of Measuring Dignity-Related Distress in Palliative Care’, Journal of Pain and Symptom Management, vol. 36, no. 6, pp. 559-57,. doi: 10.1016/j.jpainsymman.2007.12.018
3. Gastmans, C. 2013, ‘Dignity-enhancing nursing care: A foundational ethical framework’, Nursing Ethics, vol. 20, no. 2, pp. 142-149, doi: http://dx.doi.org/10.1177/0969733012473772
4. Lin, Y.-P., Watson, R., & Tsai, Y.-F. 2013, ‘Dignity in care in the clinical setting: A narrative review’, Nursing Ethics, vol. 20, no. 2, pp. 168-177, doi: http://dx.doi.org/10.1177/0969733012458609