A life dedicated to dying well
Our citizens will die better in a culture and setting where we can approach, rather than avoid, our mortality.
At the end of life there are four things that matter most. Prof Ira Byock, director of palliative medicine in Dartmouth medical school in the US, a doctor with decades of experience caring for the dying, says these are the conversations with loved ones that include: “Please forgive me,” “I forgive you,” “Thank you,” and “I love you.”
There is growing literature that points to the fact that death is not a discrete event, and that good end-of-life care is not something that happens in the last few days or weeks of a person’s life.
The quality of end-of-life care is the result of a much wider cultural stance on death and dying. Over the course of my career as clinical psychologist with cancer patients at St Vincent’s University Hospital in Dublin, I have worked with several hundred patients who have died – and almost without exception, each one has testified that we die as we live.
There are very few Hollywood moments at the bedside of those who die. Often what happens is the product of the attitudes and values that we as citizens and governors of the State hold.
These, in turn, create a culture of end-of-life care, and unless we can build a culture that can facilitate these kinds of conversations, we are never going to reach the point where our citizens die well.
These cultural attitudes and values underpin how we prioritise and organise our services, how we interact on a personal level and, fundamentally, how our society responds to the issue of death and dying.
The bricks and mortar and the significant gaps that exist in services for end-of-life-care matter hugely; if we do not address the psychological challenges underpinning end of life in Ireland, our attempts to help our citizens to die well are at the very least compromised.
We know that death is inevitable, that one day each one of us will painfully separate from the people we love. We know that each year, 29,000 people die in Ireland.
When asked, most people say their preferred final place of care is at home. Three-quarters of all deaths now take place in hospitals and long-stay facilities and almost half (48 per cent) of deaths occur in acute hospitals, yet our knowledge of the experience of death and dying in these environments is extremely limited.
We do know that there are many significant challenges associated with the provision of care to palliative patients within a general hospital setting. Not least of these is the “cure-oriented” culture that has historically been the mainstay of hospital care.
Within this culture, end-of-life interventions are too often driven by a preoccupation with treatment, routine practice and negative perceptions of palliative care. In addition, issues such as communication and decision making, advance planning, accommodation and the provision of psycho-social support are consistently highlighted by research investigating the provision of palliative care in hospital settings.
Regrettably, the voice of palliative patients themselves is all too often missing from research; and direct-patient contact, particularly in acute hospital settings, is much neglected.
We need to talk about death and dying with the patients in our care; they need to become the participants in our research studies. In fact, the ongoing failure to do so is, I believe, unethical. This is really sensitive and complex research, but that is not an excuse to ignore their views.
The greatest and, I would argue, the most enduring hurt experienced by the dying and their families is most often the psychological: watching a family member becoming withdrawn, agitated and scared in the last weeks of their lives due to undiagnosed and untreated depression or anxiety, or the unintentional emotional insensitivity of a doctor, nurse or other healthcare provider.
Furthermore, we know that minorities, for instance, the lesbian, gay, bisexual and transgender community, are likely to suffer more psychologically at end of life.
Our healthcare systems have been designed around a model of care that has “cure” at its centre.
Death and dying are most often marginalised into subspecialities and external locations, all of which give an implicit message that death is someone else’s business.
From a psychological perspective, this move away from death represents our attempts to deny or avoid the very nature of our own mortality.
Death, be it of ourselves or of a loved one, involves emotional pain. The loss of our loved ones breaks open our hearts. We cannot avoid that pain.
However, our turning away psychologically from death as a part of life is often our attempt to defend against this existential hurt.
While intended to provide a sense of control and coping, pop psychology myths that tell people to “think positive” and to “battle on” often add further suffering to the unavoidable pain of death and dying.
The founder of psycho-oncology, Dr Jimmie Holland, referred to this as the “tyranny of the positive”, noting the profound potential for harm in failing to allow people to respond differently to the challenges they face.
This tyranny causes significant psychological isolation and interrupts the most important moments of our lives, the conversations with our loved ones at the end of life.
From a psychological perspective, “fear of death”, “death denial” and “death avoidance” are all terms that have been coined to represent the core coping mechanisms employed by humans when it comes to dealing with their own mortality.
As the only species with the capacity to reflect on our own mortality, we are faced with the responsibility of how we live with, relate to and engage with the fact that one day we will die.
Reflecting on death
Considering death in this way may appear as a somewhat esoteric reflection on the very tangible reality of death and dying, particularly in the context of health service provision. However, the research tells us our psychological capacity, as individuals and as a collective, to face up to death as part of life impacts hugely on the day-to-day reality of how we care for our dying.
Existential psychology tells us that to live full, happy, meaningful lives, we need to engage with what we most fear.
Psychologically, when we confront what we most fear, death for example, we are more free to live. We need to support society to begin the process of moving towards death.
I suggest that this suffering is made more bearable, that our citizens will die better, in a culture and setting where we can approach, rather than avoid, our mortality, and where the four things that matter most – “Please forgive me,” “I forgive you,” “Thank you,” and “I love you” – can be uttered.
This article was originally published in The Irish Times 10/12/13 and is based on a presentation Dr Paul D’Alton gave to an Oireachtas committee.