ANMJ Featured Story

Living with Dignity: A palliative approach to care at the end of life

Thursday 23rd November, 2017

Dignity is a fundamental concept that defines how we interact and care for every person in our society. Our understanding of dignity and its significance for people at the end of life (EOL) is crucial to informing our day-to-day interactions with these patients.

Dignity is described as a multifaceted social construct, comprising values and feelings experienced by an individual. The Oxford Dictionary defines dignity as ‘the state or quality of being worthy of honour or respect’, (Oxford Dictionaries 2017) whereas the Cambridge Dictionary defines it as ‘the importance and value that a person has, that makes other people respect them or makes them respect themselves’ (Cambridge University 2017). Both definitions capture the objective nature of dignity - that dignity is intrinsic, that every person has the basic right to be treated with dignity (Clark 2010).

These definitions allude to what has been classified as ‘subjective dignity’, (Clark 2010) a concept that involves personal self-respect and self-esteem, or ‘self-regarding dignity’ - how a person feels about him/herself and how they perceive they are treated by others (Clark 2010; Gallagher 2004; Nordenfelt and Edgar 2005). How an individual perceives and treats another person has been labeled ‘other regarding’ dignity (Clark 2010; Gallagher 2004).

We may take dignity for granted, but its violation can be devastating for how we view and value ourselves (Jacobson 2009). Perceptions of dignity vary according to personal values and priorities. Each of us has distinct views of what contributes to our self-worth and the character of interactions which constitute a violation to our self-respect and dignity (Jacobson 2009; Killmister 2010). Due to the multi-dimensionality of dignity, there are many components of any given interaction, which may maintain or damage self-worth and, thus, dignity.

Sociologists theorise that our perception of self is developed and sustained through our interactions with others and that we see ourselves, largely, as others see us (McAdams and Olson 2010; Muller and Carpendale 2014). Self-esteem and self-worth increase if others hold us in high esteem and treat us with dignity (Horberg and Chen 2010; Muller and Carpendale 2014). Therefore, as health professionals, it is imperative we consider how we honour these concepts in our conduct with others - ensuring that our interactions are dignity enriching.

Any examination of quality in health and social services must consider the impact of ill health on individuals’ perceptions of their self-worth and dignity. The risk to dignity at the EOL as health deteriorates is a particular concern. ‘Living with dignity’ reflects having one’s human value acknowledged, irrespective of circumstances. It recognises personhood and self-worth - the individual’s sense of identity, autonomy and self-determination in the face of a body, and often a mind, that is functionally declining. It encompasses being cared for respectfully and empathically, and addresses physical, emotional, social and existential suffering at a time of profound loss (Proulx and Jacelon 2004). Chochinov and others agree that loss of dignity, autonomy and self-determination are important underlying reasons why people request euthanasia or assisted suicide (Wilson et al. 2005; Chochinov 2006; Street and Kissane 2001).

In Chochinov et al.’s (2002) model of dignity, the effect of intense, prolonged symptoms on an individual’s psychological wellbeing and the importance of functional independence and cognition on perceptions of personal dignity at EOL were identified. Psychological distress, in particular uncertainty about one’s health status, and anxiety about death also impinge on feelings of self-worth. This model acknowledges that even when facing serious illness and death, many people maintain their sense of dignity through their own personal perspectives and practices and seek to build resilience in those who are at risk of its loss (Chochinov 2006; Chochinov et al. 2002; McClement et al. 2004).

Research has demonstrated that an individual’s perception of their dignity can be encouraged and developed by the way care is provided (Chochinov 2006;Chochinov et al. 2002; McClement et al. 2004). This has profound implications for how our health services and we, as health professionals, accommodate and support people at the EOL (Clark 2010). Individual preferences must be considered in relation to how we address physical symptoms and needs, promote autonomy, communicate, interact with families, support individual cultural observances, even how we use humour. With each interaction consideration must also be given to how likely it will promote a sense of self-worth and dignity.

It must be acknowledged that in healthcare a shift towards person-centred care, individualised care plans, the use of targeted therapies, and even biomedically, all promote the concept of the uniqueness of each individual.

One of the most notable developments in promotion of dignity specific to the EOL is palliative care. Palliative care emerged from the hospice movement in the middle of the last century, however, it is remarkably misunderstood. Lack of awareness and many misconceptions among consumers, the media and health professionals present major barriers to the provision of, and early access to, palliative care for people who could benefit (Johnson et al. 2011a).

While many nurses have a good understanding of palliative care, it is important to clarify what palliative care is, and is not, and its role in maintaining personal dignity. The World Health Organization (2006) definition of palliative care is used throughout the world as a conceptual basis for EOL care. It describes palliative care as:

“an approach that improves the quality of life of patients and their families who are facing problems associated with a life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.”(World Health Organization, 2017).

Palliative care does not aim to lengthen or shorten life, but adopts a holistic, person-centred approach to relieving distress and suffering, whatever the cause. A palliative approach should be available at any point in the disease process, irrespective of the modality of treatment (World Health Organization 2017)

Palliative care supports the identity and values of the whole person and, while not explicitly articulated, the conservation of dignity is a central principle. It promotes self-determination and autonomy, and is built upon precepts of open, honest, sensitive communication and inclusiveness. Given that quality of life means different things for different people and is shaped by an individual’s historical, social and cultural perspectives, palliative care adopts a holistic approach in its assessments of physical, social, emotional, cultural, and spiritual care needs and other relevant life circumstances.

Palliative care is available throughout Australia - its availability and mode of delivery is dependent on local needs, policies, governance and resources. In using a palliative approach, an individual’s everyday healthcare team applies the principles of palliative care when planning and delivering day to day management (Palliative Care Australia, 2005). General practitioners, community nurses and hospital doctors, nurses and other health professionals can utilise a palliative approach at any point in their treatment. Indeed, I argue that the principles of a palliative approach are the minimum standard upon which all care should be based, irrespective of diagnosis.

Numerous education and support programs aim to improve the care provided for people at the EOL, irrespective of site of care. Free online education packages and regular face-to-face education programs for hospital staff, GPs and community–based health professionals are available (Caresearch 2017). Palliative care advocacy groups and health administrators are working to ensure palliative care is embedded in all health professional training.

Specialist palliative care services and health professionals are available when people present with complex, problematic or persistent problems associated with their illness. Specialist palliative care services are interdisciplinary, with different professions bringing different approaches to addressing a patient’s problems (Palliative Care Australia 2015). Research has demonstrated that, with early referral, the quality of life for both the patient and carer is improved, symptom management is improved, the number and length of hospitalisations are reduced, (Gomes et al. 2014; Haun et al. 2017) and now, a growing body of evidence showing improved survival (Temel et al. 2010).

While the management of pain and other symptoms or the need for support during the dying phase often precipitate referrals to specialist palliative care, the concepts that profoundly contribute to dignity such as complex psychological problems, family dynamics, existential distress, and EOL decision-making and discussions are often not identified or overlooked as triggers (Beernaert et al. 2014).

Many misconceptions about palliative care act as barriers to referral. Failure to open discussions with the dying person about diagnosis, disease trajectory, prognosis and wishes for EOL care results in neither a palliative approach nor referral to specialist palliative care being offered (Hawley 2017). Misunderstandings about appropriate timing for referrals exacerbate the problem. Some health professionals are reluctant to initiate EOL conversations due to concerns about destroying hope, the patient “is not up to that stage yet”, a belief that patients want increased survival irrespective of quality of life, and that patients will initiate these discussions. Yet patients believe their doctor will open these discussions when it is appropriate (Johnson et al. 2011a; Johnson et al. 2011b). Consequently, people working in palliative care or palliative care advocacy continue to still hear, “Why was I not told that I could be referred to a palliative care service; that I could be referred earlier; that palliative care is not just about dying?” from both patients and family members.

Take John*, a 55 year old engineer, diagnosed with advanced glioma as an example. John underwent surgery, radiotherapy, and then several rounds of chemotherapy in his initial treatment. He returned to work after initial treatment but soon realised he could not manage and took extended leave ‘until he improved’. After several months his headaches returned, he started having seizures and episodes of confusion. John was readmitted to hospital to commence another round of chemotherapy. His family (wife Tina and three sons; the youngest was preparing to do higher school exams) were emotionally and physically exhausted. Physically, due to the demands of ‘keeping John safe’ with his erratic behaviour; and emotionally from being constantly positive and up-beat to combat Johns’ anxiety and depression - because John was going to ‘stay positive and beat this thing’.

On readmission, no one discussed the natural course of John’s condition, its likely outcome, the possibility that further treatment may not prolong John’s life or its potential impact on his quality of life. John died five days after re-admission, having not commenced his new round of chemotherapy. He was on anti-epileptic medications, opiates for pain and sedated. The family was extremely distressed and Tina commented, “I didn’t know he was that sick”.

Up until several days before John’s death, the family didn’t know about palliative care or how it could help. A family friend/nurse intervened in the last few days of life to get the palliative care team involved, initially to provide support when John went home. Ultimately, it ensured optimal pain relief and started providing support to the highly distressed family.

This family’s chaotic experience of death will be the foundation upon which other, future, death experiences will be built. But this story could have been so different. It may have been something like this...

After an initial barrage of diagnostic tests, John’s neurologist discussed the case at the multidisciplinary team meeting where it was acknowledged that John’s outcome was likely to be poor. Given his age, family and work situation the team had concerns about how the family would deal with the news. The neurosurgeon was tasked with discussing treatment options with John and family and suggesting that the palliative care team be involved early. The nurse coordinator was asked to follow the family closely, to educate about treatment and to identify specific concerns. John agreed to surgical ablation of the tumour, radiotherapy and chemotherapy. A palliative care social-worker helped John decide to take early retirement and access his superannuation. A palliative care psychologist worked specifically with the son approaching his exams and discussed options for deferment. John and Tina were kept up to date about John’s progress. Prognosis and outcomes were discussed openly but compassionately. This was what John wanted.

The family was encouraged to discuss what was important to them if John’s condition deteriorated. John’s ambition to take the boys hiking resulted in a one-week trip to Yellowstone National Park just after he finished his first round of chemotherapy.

The community palliative care service met John and Tina early. John deteriorated, he started fitting, his headaches returned and he became increasingly confused. The palliative care physician and oncologist discussed more chemotherapy but in view of the limited benefits, John opted for supportive treatment only - steroids, pain relief, anti-epileptics, sedation if absolutely necessary. He wanted to stay at home, so the palliative care service organised support for John and respite for Tina. As John deteriorated further, he needed someone with him at all times. Family and friends rallied so that Tina could rest if John was restless. Inpatient palliative care was offered as an option and his need for high level and consistent care resulted in admission to the service two days before he died, which occurred quietly with family around. Despite their grief, his family and those close agreed he had received the best possible care, given his diagnosis.

But is supported dying like this possible in more isolated areas, outside the reach of specialists? Recent unpublished research has demonstrated how, with a commitment of time, skill and ‘self’ on the part of the GP, a multidisciplinary approach, high levels of interpersonal/professional communication, advance care planning and coordination of care and services, such care is not beyond the resources of rural and regional communities.

In a world where voluntary assisted dying is promoted as ‘dying with dignity’ we MUST get palliative care right. If we are to promote palliative care as an approach that addresses the factors which contribute to requests for assisted death then ‘dignity’ needs to be a more explicit focus of palliative care. Services must be accessible, available when needed and effective in managing patients’ concerns.

Promotion of early access to palliative care presents a number of challenges. Palliative care must be well understood and be adequately funded both as inpatient and community-based services. The palliative approach must be embedded in all health professional training. Comprehensive palliative care systems need to be available to support information sharing and seamless transition between care settings. Population-based modeling could help identify areas of high need. Identification of people with advanced malignant and chronic diseases, combined with open, honest compassionate discussion about the disease trajectory, goals of treatment and preferences for care all contribute to a holistic model for supporting people at the EOL.

Within palliative care services there must be a culture of excellence, where the need for specialist skills and training is recognised. All care must be underpinned by evidence, and a model of open inquiry about how we can do this better - exploring what people want both individually and collectively to continue to live with dignity right up until the EOL. It must be acknowledged that there are people with intractable symptoms and palliative care specialists must work collaboratively with disease specific specialties to investigate new treatments and ways of addressing such concerns.

Attributes of dignity that are important to one person are not necessarily the same for another. And while we promote palliative care as holistic, patient-centred care, we must then continue to ASK each person, “What do I need to know about you as a person to give you the best care possible?” (Chochinov 2002) and where there is an understanding of what is important and there must be a WILL to provide that care, whatever the setting.

*Cases cited are not real people but are based on real events.

An abridged version of the 2017 Vivian Bullwinkel Oration, presented by Professor Claire Johnson at the Nurses Memorial Centre, Melbourne on 24 August 2017.

Professor Claire Johnson is the Vivian Bullwinkel Chair of Palliative Care Nursing, Monash Nursing and Midwifery, Monash University, and the End of Life Care Clinical Lead, Eastern Health, Melbourne, Victoria

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