Speaking of suffering: towards a conversation about death and dying

The PM Glynn Institute has produced a new paper highlighting the need for a public conversation about death and dying in Australia.

Like many people in developed countries, Australians seem reluctant to discuss illness and dying. The discussions we do have about our mortality are often marked by fears of suffering and the loss of dignity and autonomy because of a chronic end-of-life illness. The anxiety that surrounds the prospect of death often leads us to avoid the topic of illness and dying altogether.

A public conversation about death and dying could be beneficial at many levels, including when it comes to considering euthanasia and assisted suicide, which increasingly dominate the discussion in this space. This paper is intended to help prompt such a discussion, based on a survey of some of the research on the experiences of death, dying, suffering and illness.

Types of Suffering

Suffering at the end of life can extend beyond physical pain and can affect the whole person.

Physical suffering encompasses pain, loss of bodily function, fatigue, cognitive impairment, and other symptoms such as vomiting, nausea, shortness of breath, nightmares, and delirium. 

Psychosocial and existential suffering often manifests itself in symptoms including anxiety, fear, anger, grief, depression, feelings of uncertainty, loss of meaning, purpose and hope, decreased spirituality, and a desire for a hastened death. Desire for a hastened death is often prompted by the belief that death will be an escape from the pain, loneliness, and reduced quality of life. These feelings in turn often stem from fear of being a burden, loss of social connections, and feeling let down by medical professionals who do not understand patients’ concerns or communicate with them adequately.

Loss of autonomy and dignity impacts a person’s sense of self powerfully and can be a significant source of distress and suffering. A person’s sense of autonomy is affected by loss of physical function and cognitive impairment, and by a sense of helplessness and loss of control over their immediate circumstances. Increased dependency, feelings of disempowerment and embarrassment about symptoms, and feeling forced into a demeaning situation that eliminates what made life enjoyable, leads many people at the end of their lives to feel like they have lost their dignity as well.

A public conversation about caring for the sick and dying

A public conversation must not avoid the fact that dying can be very difficult for some people and very distressing for families. It is essential to be clear about what can and what cannot be achieved through end-of-life care. The success of a public conversation in fostering deeper reflection and reassurance depends upon dealing with the reality of death in an open and sensitive manner.

Highlighting that effective avenues for treatment at end of life exist is a key starting point for a public discussion. Raising awareness about the existence and benefits of palliative care is essential, especially when so many people are still unaware that pain and suffering can be managed or alleviated to a significant extent. Good palliative care and social support makes it possible to provide physical, psychosocial, and spiritual comfort that helps relieve the symptoms of suffering.

Palliative care is part of end- of- life care but is also much more than this, giving people quality of life even with life-limiting or terminal illnesses. Access to good palliative care can address the symptoms of physical, spiritual, and existential pain, and help to preserve and restore dignity and hope in those who are sick and dying.

Feelings of loneliness, uselessness, fear, and anxiety can be allayed by companionship and being able to care for others, even in small ways, while in a state of heavy dependency. Listening to patients and good communication between healthcare professionals, patients, family, and caregivers also significantly reduces anxiety and psychological distress. Nurturing spirituality can also reduce feelings of anxiety about death, hopelessness and meaningless.

Establishing an integrated approach to treat all aspects of suffering can help to alleviate the fear of dying and of being a burden, replacing the loss of dignity and autonomy that is often felt with a sense that life is stronger than death, even in the midst of sickness and dying. 

Download Speaking of suffering: towards a conversation about death and dying (PDF, 2.7MB)