Dr. Paul D'Alton:

I thank the Chairman. I am joined by my colleague from St. Vincent's University Hospital, Ms Margaret Boland. I am also accompanied by Ms Olwyn Ryan from the Irish Cancer Society.

I speak today as a psychologist who works on a daily basis with dying patients. The question “What needs to happen to ensure that people die well in Ireland?” cuts straight to the values that underlie our society. Death remains the biggest threat as well as the greatest challenge to humanity. It is the single universal event that affects all of us in more ways than we care to know. There is a growing amount of literature that points to the fact that death is not a discrete event; rather, we die as we live. Over the course of my clinical career I have worked with several hundred patients who have died and almost without exception each one has testified to that maxim. In this way dying well does not simply involve the last days or weeks of life; rather, it is the product of attitudes and values that we hold as citizens and governors of the State.

These 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. While the bricks and mortar and the significant gaps that exist in services for end-of-life care matter hugely, I suggest to the committee today that if we do not address the underlying psychological challenges underpinning end of life in Ireland, our attempts to help our citizens die well are at the very least compromised.

We know that death is unavoidable and that one day each one of us will painfully separate from the people we love. We know that each year around 29,000 people die in Ireland. We know that the majority, about 75%, will die in hospitals and long-stay facilities. The end of life, like its beginning, is profoundly important, and increasingly, hospital is the setting in which these moments in the life cycle take place. However, our knowledge of the psychology of death and dying in these environments is extremely limited. We need to talk about death and dying with the patients in our care who are dying. These patients need to become participants in our research studies. In fact the ongoing failure to include patients who are dying in our research is, I believe, unethical. This is really sensitive and complex research, but that is not an excuse to shy away from it.

The greatest - and, I would argue, the most enduring - hurt experienced by the dying and their families is most often psychological: watching a family member becoming withdrawn, agitated and scared in the last few weeks of his or her life due to undiagnosed and untreated depression or anxiety, or the unintentional emotional insensitivity of a doctor, nurse or other health care provider. We also know that minorities are likely to suffer more psychologically at end of life. The stress of a life-threatening illness is compounded by minority stress - that is, the stress associated with increased social isolation and increased depression, anxiety and substance misuse.

Our health care system has evolved as a model of care that has "cure" at its centre. Death and dying are often marginalised into sub-specialities 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. Research tells us that our psychological capacity as individuals and as a collective whole to face up to death as part of life has a major impact on the day-to-day reality of how we care for our dying. The recent Irish Hospice Foundation, IHF, report into end-of-life care concluded by saying that most of the challenges in quality improvement in end-of-life care are more human than technical.

At a personal level, we often add suffering to the unavoidable pain of death and dying, with popular pseudo-science psychology myths that tell people to "think positive" and to "battle on" with the suggestion that "positivity" or mental attitude will change the course of one’s disease. The founder of psycho-oncology, Dr. Jimmie Holland, referred to this as the "tyranny of the positive". Such a 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.

We know from literature and from multiple studies that relationships matter. Time and time again it has been shown that relationships build resilience, protect against anxiety and depression, and fundamentally make us happier as individuals and as a nation. Relationships matter so much more at the end of life; when we are faced with death they take on paramount importance. Professor Byock, chair of palliative medicine at Dartmouth Medical School, who has decades of experience caring for the dying, recently published a book entitled The Four Things That Matter Most.They are the conversations with loved ones that include these four things: "Please forgive me", "I forgive you", "Thank you" and "I love you". Unless we can build an end-of-life culture that facilitates these kinds of conversation, we are never going to reach the point at which our citizens die well.

My written submission has five concrete recommendations that will help us move towards building a culture in which these conversations can be had. I wish to draw the committee's attention to the first of those recommendations. As the committee will be aware, cancer is among the leading causes of death in our society, and the numbers are increasing. By 2020 one in three of us will be diagnosed with cancer. Centralising cancer services to eight cancer centres has been a very positive development. However, the major shortfall is that only two of the eight cancer centres have a dedicated psycho-oncology service. Approximately 40% of cancer patients will suffer clinical anxiety and depression that will require the intervention of a mental health professional. In six of our cancer centres that service will not be provided. It is no longer acceptable that the quality of a patient’s cancer treatment depends on his or her catchment area. This inequality needs to be addressed as a matter of urgency. A standardised psycho-oncology service should be established in each of the eight cancer centres in line with best international practice.

We know that death is inevitable and that one day all of us here will be separated painfully from the people we love. We know that this separation causes huge emotional suffering. I suggest that this suffering can be made more bearable and that our citizens will die well in a culture in which we can approach rather than avoid our mortality and in which the four things that matter most at the end of life can be uttered - "Please forgive me", "I forgive you", "Thank you", and "I love you".